Our Message Board

Please use this message board page to post your comments and ask general questions, concerns or share your story.

If you’d like to become a jpouch.net blogger please send an email to Mark Hilton: mdhilton@gmail.com

967 Responses to “Our Message Board”

  1. avatar

    Dee Kramer says:

    September 14th, 2008 at 4:04 pm

    Does anyone know of a connection between drinking alcohol (a glass of Scotch or one glass of wine) and pouchitis.

    Thanks
    Dee

    dkramer@uwaterloo.ca

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    KDelphi Reply:

    I have a decade old j pouch and am having so many problems with arthritis, and, hypothyroidism, hyperparathyroidism, that I am considering reversing to an ileostomy…can someone please tell me if this would help or is it just the loss of my colon? Any links or personal experiencse would be so appreciated…..

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    Merry Lynn Guy Reply:

    I got hashimoto’s disease (form of hypothyroidism) after years of having UC. One autoimmune disease often triggers others is what I was told. So if you had UC for years and although we are considered cured after the surgery. It may be that the other items were present while you had UC but not as badly as now. I know that my Hashimoto’s is something that can not be reversed. That is something that I asked my endocrinologist right away when I found out I had to have this surgery this past year. Nope. I am stuck with it. I would say talk with your specialist before opting for reversal.

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    KDelphi Reply:

    Thanks! The things is, I never had UC or any autoimmune disease. I had my colon removed, due to a botched hemorrhoiectomy which ruined my sphincter muscles (Yes I tried to sue the dr that botched the hemorrhoidectomy)

    But, thanks for replying

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    Anita Reply:

    KDelphi,
    I can imagine that without sphincter muscles, maintaining control has been difficult. I am lucky in that respect; I can at least most of the time make it to the bathroom. I have Hashimoto’s (diagnosed before the “J” pouch was installed) and inflammatory arthritis. I recently had gallbladder surgery and surprisingly some of the arthritis pain decreased. I had developed peritonitis with the diseased gallbladder and found out what I had suspected – that my abdominal cavity had filled in with scar tissue from the colon being removed. I’m almost 10 years out from the colon removal and I hopeful I’ll continue to have only minor bouts of diarrhea. Do talk to your doctor and see if a rheumatologist can help with the arthritis.

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    Joe Reply:

    Could it be your diet?

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    Mindy miles Reply:

    I’ve had a jpouch since I was 22. 15 years. And just recently went through all kinds of information in my legs and feet and ankles and had recently went through all kinds of inflammation in my legs and feet and ankles and hips all different areas of my body I got off the Cimzia now on new drug entyvio. Maybe the problem is whatever kind of inflammatory drug that you are on is no longer working for you every few years I’ve had to change medications because it stopped working or if I went off of it for A time period when I got back on I had all kinds of inflammatory problems so I would check with your G.I. doctor to make sure whatever drugs you’re on it still working and if you’re not online maybe you should consider the fact to start one it makes a world of difference I could start to feel the difference in my hands And other areas right away before if I went to couple weeks past my due time to get my injection good luck

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    Mindy miles Reply:

    I personally can’t drink wine anymore. First red jacked me up so I switch to white wine after little while that started to also now I just stick to Malibu rum and water and it doesn’t affect my pouch at all and if you don’t the gas and the flavored just add a drop of one of those water additives like sedan I coconut pineapple or whatever. I started with the couple drops of the water additive and now I just drink it plain and I never had any problems with it

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  2. avatar

    Megan says:

    September 14th, 2008 at 8:47 pm

    Hi Dee,

    I haven’t heard of a direct connection between alcohol and pouchitis. But just because we haven’t heard of that connection, does not mean it may not exist.

    Here is a link to a post we did about jpouch and alchol. The link will connect you to other forum posts on http://www.jpouch.org site. You should post your concern on jpouch.org and you’ll get some better feedback there.

    http://ucstory.wordpress.com/2008/06/15/j-pouch-and-alcohol/

    Take care,
    megan

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  3. avatar

    sally says:

    September 17th, 2008 at 4:42 am

    hi im 47 female and have had both surgery’s and now have a j pouch. my surgery was about 10 years ago. I had my take down in december and the following october i gave birth to a wonderful and healty baby girl by c section. i have also had four older children that have had the surgery. one of my daughters had both surgerys done in one and thus never had to have the illeostomy. she is doing great.

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    ml Reply:

    So I was told that one needed to wait a year for the body to heal to attempt to have a baby. This just wasnt in our grand plan but obviously someone else has a greater plan. It seems as if you are saying you got pregnant pretty quick after your take down. Did you worry about the healing time? I have so many questions. Please contact me. Thanks.

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    Elizabeth Reply:

    All of your children needed the surgery? Is that really likely when you are thinking about having kids??? Would it be better if I didn’t have kids then?

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    jtaylor393 Reply:

    HEllo, I had my take down 4 years ago. I was told even before the procedures that there was a 92% chance of me not having anymore children. For me this was fine since I already had 4. Again I am on my 4th year and even though me and my husband have unprotected sex all the time, I have not gotten pregnant. Not that it will be the same for you. I don’t know if you have already had the surgery oor not. If not Something to think about.

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    Kanaka Reply:

    I had my takedown 3 years ago and I have been trying for past 2 years now….no luck so far :-(

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    mary says:

    September 28th, 2008 at 12:41 am

    I HAD MY FIRST SON LAST YEAR AND THE ONLY WEIRD THINGS THAT I DEFFINATLY KNOW TO KEEP AN EYE ON WITH MY NEXT PREGNANCY IS THIS – because of my insides being rearanged during my surgery my son had limited room to move and stayed in the same position for monthes and came out with positinal torticallis and positinal plagio that took pt and 2 helmets to fix. hes fine but next time if that babys not moving around cause theres no room they need to do it manually. also i kept telling my obgyn how i had a bump that looked like a hernia near my stoma and they kept telling me it was probably the babys behind or somthing poking out. well they were wrong it was a stomal hernia from the pregnancy but my gi said it didnt need surgery unless it gets biggger or starts hurting me which it dosnt but it messes with positioning the appliance so i have leaks all the time and am going threw a couple of bags a day somtimes so i might just elect to have the surgery anyway because the hernia is soooooooooo anoying!!

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  5. avatar

    Jimmy says:

    December 29th, 2008 at 9:03 pm

    Back to Dee Kramers original question above. The correlation of the scotch and wine to pouchitis is the sugar content. In the j pouch group I am in Michael May has told us since he cut out sugars in his diet is has reduced his possibility of pouchitis greatly. Sorry to not tell you something else that wouldn’t involve you cutting out the Scotch and wine.
    Happy New Year 09

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  6. avatar

    ACash75 says:

    January 1st, 2009 at 8:01 pm

    I’m a 33 year old woman. I just had my take-down surgery two weeks ago today. Initially my surgeon wanted to wait another month because my JPouch surgery had been done only two months before, but I had a skin infection forming around my stoma that was causing me a lot of pain and I couldn’t get my bag to stay so I was having lots of problems with leaks (changing my bag 4-5 times a day). The surgery went really well. I lived with an ostomy bag for a total of 8 months. The first ileostomy I had was easier than the second because my bags stayed put and I didn’t have leaks. It was really difficult for me self-esteem wise. There were so many clothes I couldn’t wear any longer. I didn’t feel like I could do yoga or go running (my bag was ALWAYS filling up) and I missed those things so much. Mentally I just couldn’t get to a place of acceptance with the bag. I was trying, and if I HAD to, I know I would have made it work, but I would have needed a lot more support. I am so happy to be living without a bag. I’ll deal with a sore bum and multiple trips to the bathroom to be bag-free! It’s funny for me to read people who have the opposite opinion. We’re all so different! It’s good to know all sides of the issue.

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    Christie Reply:

    I so hear you on the self esteem issue. As a matter of fact, it has affected my marriage. We are now separating. I had my colectomy surgery on March 3rd…and had the most weird course you could ever hear. Initially the first complication occurred immediately. apparently my intestines were not long enough, and they could not make the tempo0rary ileo they wanted to ..so they closed up and left the jpouch to function on its own. would of been great if it all worked out..no take down surgery. But NO!! I developed a vaginal fistula. Get this, I was Pooping out my vagina.(that was pleasant) NOT!! So it was a second surgery. Just to let you all know, this is EXTREMELY rare…my surgery never had this happen in his whole careeer. But then they cut me totally from top to botton on my abdomen. NOw I have a ileostomy but higher up than most people get it. I’ve had several problems with dehydration. Once yo0u start to get dehydrated, get to the ER, there is NO turning back. (trust me, I tried). anyways, I’m waiting for my fistula to heal, and its not doing it. dammit. I will be undergoing another exam soon to check. But as soon as there is a prob. I will call. you have to be your own advocate, because in reality no one is looking out for you except you. If you feel its not right, let it be known!! I have so much more medical issues but this is just the beginning..hang in there, and plz tell your doctor EVERYTHING!!!

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    Jessica Reply:

    Wow! I am 25 years old, and dealing with almost exactly what you have descibed. I do see that it has been over a year since you posted this, but nevertheless you went through it. I am right now 5 weeks out from my second surgery and having such a bad time with this Loop-end stoma. I have such a bad skin infection already, and the doctor has agreed to move the Take down surgery up by a month. So hopefully only 2-3 more weeks of this miserable pain, and living with the ileostomy! Any tips you can provide??….Jessica

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    Jessica Reply:

    Oh my word! :) haha :) Sorry Abby, I didnt realize this post was from you. The name was diferent, but then I looked and recognixed your dog. I cant sleep tonight, and am just soaking up all the info on here that I can to better prepare me mentally for this next and final stage. Sorry, Thanks for you!!

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    Mindy miles Reply:

    Hi my name is Mindy and 37 years old. I started having problems when I was 19 and pregnant they diagnosed me with UC originally, I live in a small town with not that good of doctors. The doctor here can’t me on really high doses of prednisone for a couple years every time they started to take down my dose I would just start gushing blood again. My mom had UC and had a colostomy bag since I was about two years old. Literally on my 21st birthday I was diagnosed with Pio canker know S literally on my 21st birthday I was diagnosed with Pyogangernosium I know I don’t spell it right but it’s a skin condition basically skin ulcers on the skin. Almost a year later they remove my large intestine and colon three months later when I was 22 they did the takedown. A few years after that I ended up with a couple of fistulas which were not fun problem of living in a small town is basically they play doctor until they go to Littles to do it in the end you of they play doctor until they don’t know what to do. Then I went to the next town and the next and the next and the next and had tons of different drugs and surgeries done almost every 2/3 months for over two years. Every doctor just tried to pull every idea they could to fix the fistulas when I finally found a doctor that said they were going to play guinea pig with me like everyone else had they sent me to mayo clinic in Phoenix Arizona which is about a 4 Hour Drive for me. They finally figured out that I had Crohn’s not UC and started treating accordingly by the time I was done there I had these rubber tubes called C tons going through my rectum and each fistula and then basically twist tied at the bottom which might sound horrible but it give me my life back. Of course this isn’t meant as a permanent solution it was just because I’ve been through so many different doctors and their ideas of how to fix fistulas that even though I had rubber tubes hanging out my bottom I could return to work start today start to feel like I had a life again. Over the years I’ve gotten worse and then better and then worse and then better and each time I had complications even since I was 19 the doctors have always said that I should just put a bag on but for a 19-year-old Who watched her mom go through complication after complication was terrified of that. My dad even left over that. By the time I was 25 I was divorced and a single mom so then they idea of the bag was even more terrifying. The three months that I had the bag on I had ulcerated all the way around my stoma so I could never keep a bag on for more than 24 hours. I had to have my mom come over every day and rip the bag off of ulcerated skin which hurt like hell I would shower then she would reapply it and I would let the glue that stung and again hurt like hell until it was on. Over the years I have dated a lot and either I sabotage and run before I have to explain the whole situation or they get told and run themselves. I had a fiancé that I was often on but was worthless and any of the departments I might need him in whether it be financially emotionally whatever. I spent the majority of my adult life sick and when I do explain it to people I always had to make a funny joke and say it’s a real pain in the ass. Of course you have friends who get it or try to at least then there’s ones that just don’t at all. By the grace of God I just got married February 20, 2016 to a wonderful understanding man who is wonderful to me. My daughter is 18 and sooner or later I know will be on her way out her toast at our wedding was Thanking him for doing what she could not. In September I started having problems with my legs and feet I made it out to Mayo by January 1 because we got our marriage license early since they did not except my insurance. All the drugs and attempted but failed Fistula repair has to be at least over 20 times. I’m sure is taking a toll on me. But this last leg thing at a certain point I didn’t know if I was going to be able to walk down the aisle gradually my legs got better the sores that had lumped up have gone down the swelling that was making me look like the elephant woman is gone. But during the search to make sure this had nothing to do with my Crohn’s when I got scoped they said they couldn’t get the camera through the top of my J pouch because of all the information that the camera wouldn’t fit in that my entire j pouch is covered in ulcers. So of course they send me to the colorectal surgeon at mayo clinic who says he sees a lot of boom he sees a lot of bums and mine is definitely up there of the worst he’s seen in a while and of course tells me that the bag is my only option as always. In 2011 I let this surgeon here in my local smaller town convince me he could fix me make everything great and normal and take out my Fishel’s in the next year he did what to me seemed like fishing line he went in would cut and tie that thing through my rectum and fistula and tie it at the end. Which to me I thought he was doing something similar to yours before with the c-tons but after a year of going back every 30 to 60 days my end result was that he cut through one whole side of my sphincter. So now instead of having to worry about a infected fistula every few years I poop on myself every day it basically leaks itself out and then I go clean myself up and go about my day I wear Kotex pads and fold tp to shove between my cheeks in hopes of having control over what leaks out. Now I’m just at the beginning of having issues again the surgeon says surgery I still of course I am being stubborn Mine wasn’t a cakewalk last time. I feel like I would be just trading one problem for another group problems I live in a tourist town we spend the majority of the year on the lake The surgeons answer to well just wear a one-piece when I’m only 37 I’m just not really prepared for. I only went into work one day this week and spent the majority of the week crying at home I was trying to check out what foods are best for ulcers and all it did was keep bringing me to this site so I took it as a sign and decided to share my story. I know I’m not alone in this fight I know there is some not as bad And some worse. I just finally found this great man who I just finally found this great man who has spent the last six months driving me back-and-forth 4 HR trips they give me pain medication but someone unintentionally at work already made the fact of me being on it and working a big deal which I’m only a nail tech and only doing nails everyone keep saying just take care of yourself and doing the best that I can I guess I just don’t know what else to do for myself to help myself besides taking time off work sleeping more sticking to for myself to help myself besides taking time off work sleeping more the sticking to saltine crackers so I have less to worry about running down my leg and it doesn’t give me stomach cramps. They diagnosed me with some other skin condition on top of it which the medication they gave me made me sicker than a dog that they thought I had C diff so I spent some time in the ER and I’m fine that one weekend 10 pounds less later I kind of feel like it’s just been an uphill battle and I’m not really sure make it back over the hump

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    Mindy miles Reply:

    I published in the wrong area how do I get all that information to where it supposed to go to where I can get feedback

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    Mindy miles Reply:

    I have had mange a patch for 15 years I got it when I was 22 after a surgeon gave me a scope of my pouch two months later 70 there was a tear in the surgery site and I have ended up with probably At least five fishers over the years mine were anal fistula is though so they would go in and clean it out and then I would poop out of multiple holes and have to do sits baths after every bowel movement. And with Crohn’s we all know how much we go. I finally made it to mayo clinic where they ended up putting rubber lines through the three fistulas I had to keep them open so they could stop doing surgeries in cleaning out the lines they would drain on their own So I lived with those for four years before they finally broke and closed up on their own but then a few years later one came back originally they had cut through my butt cheek to clean out the infection is a very hard long road Over the last 15 years I’ll have a few good years and then one bed and then I’ll get through it and if you more good years. I also listen to a doctor that wasn’t a colorectal surgeon specialist who said they would fix me and ended up with a severed rectum so I have learned I should have stock in Kotex pads LOL And packing a few sheets of Charmin toilet paper up close keeps whatever leakage from spreading to fAr. I was sick for the last six months and they’re always pushing me to get the bag back on but I just refuse since I had so many complications with it good luck

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  7. avatar

    Eric says:

    January 2nd, 2009 at 12:33 pm

    Holy cow, 4-5 times a day? I thought I had it bad when my site was irritated and I had to change my bag every other day. Thanks for sharing, it makes going through this a lot easier.

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  8. avatar

    Jeff says:

    January 24th, 2009 at 9:13 am

    Dee,
    I had my reconnect in November and just getting back to enjoying my libations. Only issue I had was with the scar tissue closing up on me and the need for dilation (had to go under this time) a casual bevrage with meals and few sociable drinks with friends have not really been an issue.
    I do have cont issues and nary a day goes by without a remnant in thy shorts. Hoping that as time goes by this will decrease and will move back to a “new normal” scenario. have had a few burning issues (avoid Doritos for a few months) but found a great cream from colo-plast.
    anybody with positive feedback that knows when this gets better is appreciated, my wife has been a saint but she can only take so much!!!
    Thanks
    new to the site
    Jeff

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    Gina Chapman Reply:

    Try soaking in a hot bath with Epsom Salts. Then i use the A&D ointment. When you say dilation are you talking about anal stenosis? I have that problem too. Does your doctor put you under to do that? It is the most painful thing ever! I had natural child birth twice and this is right up there…just doesn’t last as long…but it really hurts.

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    Chris Reply:

    Hi Jeff,
    It definitely gets better! I had my J-pouch 17 years ago, and while the actual operation was tough, I couldn’t be happier about the way everything works now.

    I’ve never had pouchitis, I’ve been known to drink several beers a day after a morning of a pot of coffee and everything was fine.

    So don’t despair it will get better. I used to take Metamucil three times a day and now only do twice. I take three immodiems a day (two in the AM and one before bed).

    I’ll have a little accident now and again at night, but its related to dairy, while i can have a bowl of cereal in the morning, i can’t at night. No ice cream late either, though i’ve had milkshakes at mid day with no problem.

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    Sarah Reply:

    My son has had his hooch for a year now and still gets severe stomach cramp when he is active. This has made it tough to keep a job or even find one that doesn’t require him to be on his feet all day. Is anyone else having cramping and will it ever subside?

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  9. avatar

    Stephanie Hyche says:

    February 18th, 2009 at 1:31 pm

    Just to echo others (and a question to ask…) thank you all so much for coordinating and contributing to this site. I am a 34 year old female diagnosed with UC for 3 years. I am proceeding with j-pouch surgery consultation on March 23rd and am so appreciative of the vast amount of information (both medical and psychological) that I have found here. Speaking to the “women’s issues” and “body image issues” concerns, I can tell you that I was diagnosed about half way through my second pregnancy and my son was born healthy at full term. That was three years ago and I have had only two reasonable periods of remission. I know that for me, these surgical procedures and new lifestyle are going to be a mind game – way more mental than physical. I am a self-professed control freak. I have a request of my own…If anyone can share information on going through this process while being overweight, I would love to talk. Prior to being ill, I decided to get my life together and I lost over 100 pounds through dieting and exercise. Of course, that is what makes this whole thing so crazy… I was the healthiest I had been in my life. While not at my ideal weight, I was happy and healthy at about 165 (I’m 5’9″). Since my diagnosis, I have lost and gained weight though flare ups and steroid use, and, having been back on prednisone most recently for about 6 months now, I am pushing 200 pounds. I wouldn’t really care about this, except that as a result of my earlier major weight loss, and now re-gain, I have lots of belly fat and loose skin. I am very worried about placement of the stoma and healing from incisions, etc. My silver lining is that if I come through this unscathed, I think I can justify getting a tummy tuck in a few years! :) I would love to correspond with anyone who has any insight. Thank you all again for sharing. This site has made it easy for me to compile my ever-growing list of questions for my surgeon! sth@uwa.edu

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    Anita Reply:

    Hi Stephanie,
    I had the tummy tuck a year after my take down surgery. I was told by a wound care nurse that sometimes when you get older you have to revert back to the illeostomy. One of the best things I ever did, self esteem wise and I think if I do have to revert back, I won’t have the significant skin problems I had with the stoma and bag. Weight loss and sagging skin unfortunately causes the ostomy bags to not adhere properly. I had to lose an addtional 50 pounds to promote a successful J pouch surgery. I haven’t had pouchitis in the past 7 years (take down done in 2003 at 49 years old), used 6 immodium up until recently which helped, don’t eat much dairy. I have started taking Methotrexate for enteropathic arthritis. Turns out UC perpetuates arthritis or goes along with other auto-immune conditions (I have Hashimoto’s). It was tough going through the surgeries but somehow you find strength knowing that you will be able to live a somewhat altered “normal” lifestyle with some adjustments in diet. I will say that you have to relinguish some of the “control freak” and realize you can’t sweat the small stuff because most of it isn’t a priority. Good luck.
    Anita

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    Mark Eastabrooks Reply:

    Hello Anita, my name is Mark Eastabrooks and I had a small cancer tumor removed about a year ago and given a temporary bag. I was reversed in June and I am haveing a terible time controling bowel movements. I can’t seem to stop even air leaking out. Do you think it can still get better? I am getting desprate, any information will help.

    Thank you in advance Anita.

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    Terry Reply:

    Mark, I’ll be looking for Anita’s reply but want to add mine as well. I too had a cancerous tumor and had my surgury in 08 with the jpouch up and running May 09. I still have problems with nightly bm’s just oozing out without my feeling it. I have very few daytime accidents and they continue to decrease. I wear Depends for sleeping which really bothers my male pride but that’s better than messing up the bed. I also keep a pad under the sheet with a towel on top of that, so any bed mess is confined to the towel. Pardon the pun, but I’m really anal about that. I take 3 Immodium every 4 or so hours. If I take dairy products I use Beano immediately before to control the gas. I am trying to reduce sugar intake because I understand that may contribute to the problem. Fortunately, my weight doesn’t fluctuate very much since the surgery. To your primary question, Yes, I think your situation will get better, and I think mine will too. My surgeon told told me that fully adjusting to the j-pouch can take two years or so. My biggest issue right now is having bowel blockages due to scar tissue. As a result I am on a soft diet, so I’m not getting the kind of fiber that would normally slow down the bm’s. Hang in there and try to be patient. Our lives have changed so we need to manage them differently but but we can still be productive and happy. Anita’s closiing comments are well-taken. Best wishes to you.

    Terry

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    Anita Reply:

    Mark, Hopefully your BM’s will slow down quicker than some people. I went about 8-12 times a day initially even with taking 6 immodium a day for about 4 years (Terry is right about it taking 2 years to adjust and establish what is good or not good for you). I found that eating sticky rice helps and I’m a cheese queen. I do know that I have scar tissue in the abdominal cavity due to 95% of my large intestine being removed due to the UC and a recent gallbladder removal. You don’t mention this as part of your tumor removal so I assume you had only part of your colon removed. Speculation – Your colon was traumatized and it will take some time for the “reset” of nerves, etc., to take place. Avoid drinking with straws (you swallow air), carbonated beverages, use the Beano, and chew fruit peels well as they can become trapped in narrow places in the colon. Expeling gas is dangerous as you know. If you can eat a very light supper (try eating some rice with the meal), this will help with night time trips to the bathroom. Stay optimistic, it should improve. Anita

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    Anita Reply:

    Hi Mark, if you do a Control plus the F key you can search for your name (or anyone’s name) and find replys quicker. I’ve had a long day hanging out in the bathroom. My mother lives with me and is in a state of rapid decline, so stress has been increasing my use of toilet paper. But then I had tried Agave Nectar for the first time this morning and so who knows what has impacted frequency. You start out feeling incredibly sorry for yourself because life has become so unnatural or it seems so from what you had experienced before. Hard to accept, oh yeah, but the alternative – for me it was almost death because of bad medical treatment, so that kinda put it into perspective for me. Anytime you have major surgery, nerves and blood supply affecting the area are impacted, it’s almost a retraining of bodily function and then the small intestine is assuming a role it’s not accustomed to. Start out eating rice and protein (i.e., chicken, tuna, beef causes gas) and gradually add other foods to see if they cause problems. Boring yes, but necessary for a while. Be determined to find the right diet, hang out with people who laugh at your toots or who cook Chinese, and most of all think of this as a new chapter in your life, one of personal challenge that will make you more stoic and tolerant of yourself and others. It has me.
    Anita

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    sig says:

    February 26th, 2009 at 5:16 am

    Thanks for your entire Blog, seems great. Have not had time to read most of it yet, however may I ask if there is a way to search for, here, or focus in on, those participating (on your blog here or other blogs attached) who have a j-pouch, a reconnection (no longer wear the pouch), and also have had colon/rectal cancer (only those)? For example, having had radiation treatments, and then a lot of chemotherapy, and then the surgeries and j-pouch now also, it may be that some of my aches and pains (to put some of them mildly :-) may be due to those several treatments, not a history of UC as such, and continuing aftereffects of those cancer treatments.

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  11. avatar

    Eric says:

    February 26th, 2009 at 8:34 am

    Hi sig, you can try the search function in the upper right corner of all the pages, and if that isn’t powerful enough, you can search using Google by typing this: [your search term] site:jpouch.net

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  12. avatar

    Lisa says:

    March 10th, 2009 at 1:25 pm

    I am an almost 30 wife and mother who has FAP (Familial Adenomatous Polyposis). I had my large intestine removed and had a temporary ileostomy for three months so everything could heal. I was lucky because I was diagnosed only with FAP, most people at my age already have colon cancer so as I said I was lucky. Both of my kids and nieces have FAP so I’m keeping a close eye on mine. As for women’s issues, I have lots and so does my girlfriend with the same disease. We have Polycystic Ovarian Disease. I was told I could never get pregnant so I was surprised when I found out I was pretty far along. My daughter was easy I knew with her at 3 weeks. After learning about this in 2008 I had my tubes tied so we couldn’t have anymore children. My mom was the “mutant” and my sister died of FAP in 1978 when she was 3 (a rare form of it), my brother was diagnosed with colon cancer in 2006 at 25. I would love to be able to share more my story if possible.

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    Kera Reply:

    Hi Lisa……I am 28 and was diagnosed with FAP when I was 12…my colon was so bad that I had it removed a few months later. I too had the ileostomy for 3 months and then was reconnected. My daughter is 12 and she will be having the same surgery her on the 19th…fortunately for her they can do it laproscopic….did your kids have to have the surgery? How are you doing health wise? My mother was the one who passed it to me (she got it from her father) Her father died at 29 from colon cancer…they didn’t find it fast enough. My mother passed at 39 but from an enlarged heart…. she had a lot of problems from FAP….Gardners syndrom, IBS….do you have this? What about your stomach and your small intestine?

    [Reply]

  13. avatar

    Jessica says:

    March 23rd, 2009 at 4:43 pm

    Your website is fantastic and I wish it was around in 2006 when I had my surgery. I often wished I documented my journey to help others and am so thrilled by how brave you are. I noticed you were interested in stories from a female’s perspective, especially in regards to fertility. My surgeon was very wary on my ability to have children, 6 months into my recovery, my husband and I found that I was pregnant! Kai is 17 months old now and I couldn’t be better than ever!

    [Reply]

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    Kanaka Reply:

    Jessica you are my hope too….I just had my first surgery. although I am having a lot of complications after my surgery (my stoma stops working for no reason and needs muscle relaxant to make it work!), leading to tummy cramps. But am so hoping after my second surgery, I will heal and be healthy and then next year have a healthy pregnancy and a healthy baby.

    ALL: I got Ulcerative colitis and stopped responding to medications last year. Was admitted in hospital on IV steroids.
    Now I am having so much complication with my ostomy!
    1. It stops working on its own and I need muscle relaxant for it to start working. Today, it did not even work fter 2 valiums..and had to take one more.
    2. Skin around the stoma is all peeled off and bad
    They want to do my second surgery on 19th June and I think we have no choice…but a so weak and do not know what to expect from second surgery after all this…
    Not sure if there is hope

    [Reply]

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    Gina Chapman Reply:

    There is always hope. Have you had your second surgery yet? I am 42 and had my jpouch surgery in 2003. I have been through some very trying times like all of us on the site. I too had UC and my body became steroid resistant. I had 9 units of blood the week before my first life or death surgery. After the first surgery my bladder quit working. I came home from the hospital (7 days in) and had to self cath myself everytime i needed to void. So cath to pee, bag to crap…i was a basket case. I cried every day. The stoma I had with my temporary ostomy had a complete separation and the fell into the wound. OUCH! the stool would not empty into the bag correctly so i had to purchase a special band and ostomy supply to push into the stoma to see if that would help. the acid in the waste burned my skin and the skin tore…i wanted to die! I was so scared! Then after the take down i had an obstruction and was in the hospital 7 more days. Thank the good LORD above the obstruction passed, but it was awful. Now years later i only deal with pouchitis and anal stenosis and oh yeah, i had a fistula. THis past October I had surgery to insert a seton to help prepare my body for the fistulotomy which i had in December. Luckily the muscle tissue wasn’t so involved and they only had to cut about a 1/4 of an inch of sphincter tissue. THat is much better now. I do feel that as I cut sugar out of the diet the pouchitis is better. I hope your second surgery was successful and that you are feeling much better. Life is good!

    [Reply]

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    Kanaka Reply:

    Hi Gina,
    I had similar issues with my first surgery, where the stoma would keep reducing and going in.
    I just got my second surgery done and now am recovering. Its not easy as my butt burns and I have too much gas. I am just struggling to manage my diet and the imodium/citrucel intake!
    I like your attitude and thanks so much for the hope. It makes a huge difference.
    Thanks,
    Kanaka

  14. avatar

    Charissa D. says:

    March 28th, 2009 at 7:59 am

    Hey everyone i’m finding this site helpful, i had my j pouch surgery about 2 years ago and im just started to face problems.. i was wondering if i could talk to anyone about them?

    [Reply]

    avatar

    jackie Reply:

    i am having tons of troubles… feel free to chat any time

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  15. avatar

    Lizz says:

    March 28th, 2009 at 8:12 am

    Of course, shoot.

    [Reply]

  16. avatar

    Mark says:

    March 28th, 2009 at 8:22 am

    Hi charissa, Like Liz said “Of course, shoot” if you want to private message any of us, just send me an email at mdhilton@gmail.com and I can either chat with you or get you the emails of other bloggers that might be able to help you depending on your problems. We have women, men, open and closed surgery, all types of complictions, etc…Just let us know. Also, you can try http://www.jpouch.org which has a wonderful support forum for people facing jpouch related problems.

    Mark

    [Reply]

  17. avatar

    Christine Chavez says:

    March 30th, 2009 at 9:46 am

    I wanted to join in, as my husband has just had a full colectomy with j-pouch, due to FAP. I have journaled his journey as well as pics of his recovery from surgery til now. He had his surgery March 17, 2009, and as of today he is fine, besides gas pains have got the best of him, really. Because he didn’t have any signs or symptoms previously, with FAP, you don’t know you have it unless you get a colonoscopy early on, or until you already have cancer and are showing signs of that. So he doesn’t so much feel relieved as some with UC do, but he does feel good about having the surgery because it was a life saver for him. My husband is 30 years old and his father passed away at 42 of colon cancer. Our children will get tested a year from now for FAP and will follow there dad’s footsteps if it turns out they also have FAP.

    I just want to note, I found this website and showed it to my husband and we both enjoyed your story it helped us to prepare before the surgery and helped us to better understand what we can be facing in recovery. My husband found Mark’s story inspiring to journal his own journey because there is not a lot of info regarding this same surgery with patients who have FAP, as with UC. My husband whose name is Ricardo was unsure of getting the stoma, our Dr. had said once they open him up is when she would know for sure if the stoma was needed or not, and it wasn’t needed so he went from getting the colon and rectum removed to just using the J-pouch. We would love to post his story.

    [Reply]

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    Dwayne Reply:

    I was diagnosed with colorectal cancer and a rare myh gene mutation October 2010. They say it is worse than FAP, but similar. I went through radiation and chemo from Oct. to Dec. Cancer free as of Jan. 3, 2011. They removed my colon Jan. 28th and I had a temporary ileostomy until March 16. That is a whole other story. On March 16 I had take down and my jpouch is functioning. I have 20 or so bowel movements still as of today, 4-6-11 and am constantly sick at my stomach. The nausea is unbearable. Everything has a foul smell to me and everybody. I have read several posts with no mention of nausea. I am beginning to wonder if I am the only one. Do you have any suggestions? I am also on a wound vac due to my incision busting open. Hoping there is light at the end of the tunnel.

    [Reply]

  18. avatar

    Christine Chavez says:

    March 30th, 2009 at 10:00 am

    Mark just a question did you have your surgery at UCSF Mount Zion? We were looking at the pics from your story and some of the backgrounds in your pics looked familiar. My husband had his surgery done there and we loved the care there. We are from Sacramento, CA. so not too far from SF, because with FAP it’s genetic, which his father had, we had went to genetic counseling in SF and was referred to a wonderful Doctor that specialized in laporscopic colectomies with J-Pouch and also was very familiar with the FAP disease so for us that made us feel very confident in who we were having do the surgery and to help us better understand what we were facing.

    [Reply]

  19. avatar

    Mark says:

    March 30th, 2009 at 12:55 pm

    Hi Christine, FAP is one heck of a sleeper disease that most people don’t know about but it so incredibly serious. Did you see the post Megan recently on March being cancer awareness month and talking about FAP and sharing links to another FAP’ers story http://www.jpouch.net/2009/03/11/march-is-colon-cancer-awareness-month/

    Yes, those are the infamous UCSF Mt.Zion hallways, I grew up right outside Sac and having such great care in SF was hard to pass up. We were only highly satisfied with the level of care received. The doctors and nurses were outstanding on all regards. We have others on here who are UCSF as well, both Jamie and Brevin are getting UCSF care.

    That is great that you and Ricardo documented your story, the surgery and all. Of course, we would be happy to host your story. We don’t have anyone on the site who has shared their FAP surgery story, and we think that is very important to share since we do have readers with FAP having the surgeries. And I know the issues with having FAP related surgery are different because like you wrote, there isn’t the physical relief of getting rid of the UC, but the mental relief of fighting cancer.

    When you are ready to share just send me a private email at my email mdhilton@gmail.com and we’ll get you all set up to share your story.

    [Reply]

  20. avatar

    J-pouch Life says:

    March 31st, 2009 at 1:01 pm

    […] recently had Christine and Ricardo post some comments. Ricardo on March 17 had 1-step surgery due to FAP. So he bypassed having the […]

  21. avatar

    Deborah Waugh says:

    April 8th, 2009 at 5:51 am

    I am at the childrens hospital in st paul ,mn….im sitting in the childrens family resource center crying my heart out ….my son (14) will be having a J pouch surgery done this afternoon….I am scared to death!!!!! He has been so sick for so long and I know this is the right thing for him….Still my heart is breaking to see him so vulnerable laying in his hospital bed hooked up to IVs and lines….I wonder what the future holds for him and I…..He has missed so much school..>After 18 months of steroids..asacol…vancomyecin…blood transfusions , ferrous sulfate..and everything else under the sun, we got the call monday morning to drive 12 hours from home to have him admitted here…Maybe this isnt the right place for me to cry my heart out but I just felt I needed to get this off my chest so I can be strong today for Jacob….Anyway….its nice to read some of the good outcomes of this extensive procedure….Not too sure how the bag wil go over at school and how well he will hide it…he has so many concerns about the odor…noise…etc….anyway..What doesnt kill us makes us stronger….right????..God bless u all and thanks for letting me cry my heart out….

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    B. Malta Reply:

    How did your son make out with his surgery? My granddaughter has to have surgery and she is only 8 years old? Have you ever heard of anyone this young having it?

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    ml Reply:

    Look on this site under blogs. There is a mom who you could connect with her little sweet girl had the surgery and last I read is doing really well. She is very young. Blog is sweet slice of life.
    ML

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    Diane Reply:

    our son had his total colectomy – in three surgeries- when he was three years old. He is thirteen now and very healthy.

  22. avatar

    Jamie says:

    April 8th, 2009 at 9:23 am

    hi deborah –

    you are in good hands at sp paul children’s hospital. i spent some time there as a kid and they always took wonderful care of me. It sounds like you and your son have been through a lot but it also sounds like he is a fighter and will come through this beautifully. Kids are even more resilient than adults and i hope that he bounces back quickly once he gets his diseased colon removed. Good Luck!

    [Reply]

  23. avatar

    Mark says:

    April 8th, 2009 at 12:51 pm

    This picture is one of my favorites, it is of Mandy (16 years old) with her temp ileo and her friend – they had gotten her all taped up and ready to go water skiing – http://www.jpouch.net/2008/07/14/a-picture-speaks-1001-words/

    Coping with the bag and his body changes is all in how the family and friends normalize the situation. You don’t need to worry about people knowing about it at school, or noise, or smell, all of those things are so minor. There was NO SMELL on mine EVER. And my stoma did gurgle some in the first few weeks, but once it settled down so did the noise, and also, I just stayed away from foods that made me uncomfortable and gassy – noise problem
    solved.

    Be sure to read through all the Surgery Stories and Photos, you’ll find on mine that my life went back to normal so quickly and it was immediate that I didn’t feel UC sick any longer. I’m 18 months out of surgery and living totally normal and healthy with my jpouch. Then look at Gil’s story, she is 16 and doing well. Casey had her surgery at 21 and is back to school and doing well. Carter 22 years old, back to living well.

    My recommendation is to get him home, through him a welcome home with NO COLON party, bring his closest friends, show their parents or them photos on this blog and do things you can to normalize the situation – that is the main way to get through this strange transition you all your lives.

    [Reply]

  24. avatar

    Christine Chavez says:

    April 9th, 2009 at 9:38 pm

    Hello Deborah I wish you and your son all the best, I could imagine I am a mother also of a 13 year old boy and 7 & 8 year old girls, my husband just had the surgery and to see him go through it and seeing him trying his best to recover while being strong, I can’t imagine my kids going through it, however my husband had the surgery for a genetic mutation that has a 50% chance of getting passed down to our children and so in a year or so my two youngest children will get tested for the same genetic mutation and if they test positive they will have to follow in there dads footsteps at an early age to prevent colon cancer. I pray for a speedy and good recovery for your son and it is okay to cry it sometimes makes you feel good afterward, and seeing your son healthier and happier after having this surgery will pay off it will just take time. All the best.

    Ricardo and Christine Chavez

    [Reply]

  25. avatar

    Christine Chavez says:

    April 9th, 2009 at 10:21 pm

    QUESTION: Ricardo came home with his JP drain from the hospital and today we got it removed, the nurse said he had it in long enough and he was starting to feel pain where the JP was, he described his pain of like a pulsing pain, however after calling the nurse this morning regarding the pain that however had started throughout the night , she said to come in right away to make sure it wasn’t infected and to remove it, so we did and of course it stung really bad when she removed it, once he got his color back and started to breath he was fine, but on the way home he started to feel pain in that area and he took ibuprofen so from around 3pm today till now he has felt a lot of pain in that area where the JP drain was and he wants to know if its normal. He has taken the ibuprofen twice and is using the heating pad and the pain just comes and goes but quite often and he still is draining from the area which the nurse said was normal for a couple of days it would be like this but she didn’t mention pain or discomfort. I know a lot of people get there’s taken out before leaving the hospital but for him he had it in since March 17th, and the nurse said it looked good no infection. If anyone can comment that would be great just letting him know this is normal makes him feel better.

    Christine and Ricardo

    [Reply]

  26. avatar

    Megan says:

    April 10th, 2009 at 5:07 am

    Hi Christine, that isn’t one thing we had to deal with. You may also want to copy and past your question into the General Discussion board over at http://www.jpouch.org, there you will get a broader audience and maybe someone will have some experience just like Ricardo.

    Megan

    [Reply]

  27. avatar

    eric says:

    April 10th, 2009 at 9:32 am

    Christine: I had some issues with my drain, the nurse who removed it left the little lead string in, so for a few days I had this piece of what appeared to be dental floss hanging out of my body. I wanted to pull it out, but I was also scared to. We were finally able to get in to the hospital again and have it removed by the technician. My point? Complications happen, so try to get in touch with the highest level person you can.

    [Reply]

  28. avatar

    Chaz & Lori Burton says:

    April 10th, 2009 at 11:55 am

    Christine, My husband, Chaz, had step 1 surgery March 24th. They removed his drain in the hospital & it leaked for at least 2 days (a clear, pink liquid). At first it was like a faucet then slowed way down. Also, before it was removed he would complain of a pain there….almost at times, worse than his incision. After it was removed & we were home he still complained of a pain there especially when he got up & down. He had his staples removed this past Monday & oddly enough that seemed to help the pain a bit. Slowly each day it is better and better. I guess my point is……pain doesn’t necessarily mean something is wrong. We pray for a quick recovery!! Lori

    [Reply]

  29. avatar

    Chaz & Lori Burton says:

    April 10th, 2009 at 11:58 am

    Also, Chaz came home from the hospital with prescription pain medicine, Vicadin. (not sure of spelling) You may want to see about something to take the edge off more than ibuprofen. Just a thought.

    [Reply]

  30. avatar

    Jamie says:

    April 10th, 2009 at 3:48 pm

    i had pain in the area where the jp drain was. I had a ct in the hospital and it turned out the drain had flipped and was now in the wrong place and basically constantly poking at my pelvic tissues which was causing pain. I still had the pain in that are for about a week after they removed the drain – i think it was caused by irritation. Now the pain in that area is completely gone so i think it will just take time. Obviously if your husband develops a fever then call his surgeon ASAP as there may be an infection brewing. Take care!

    [Reply]

  31. avatar

    Christine Chavez says:

    April 10th, 2009 at 6:13 pm

    Thank you all for your responses, it really helps us get through this and hopefully the pain will subside sooner then later. Ricardo did come home with some pain meds aside from Ibuprofen so he did start to take that early this morning which it did help for a while. We are thinking because he had it in so long that his tissue started to heal around the drain and once it got pulled out it might of ripped at his insides a bit. Well I hope everyone all the best, and thanks again.

    Ricardo and Christine

    [Reply]

  32. avatar

    Brevin says:

    April 11th, 2009 at 9:09 pm

    Hi Deborah! How is your son doing?

    [Reply]

  33. avatar

    Brian says:

    April 14th, 2009 at 11:13 am

    I just had the j pouch procedure on March 9th and have been feeling very ill. Its been four weeks now and it has very, very slowly improved. I have some symptoms that I wanted to know if others also experienced. I have the urge to use the bathroom often and when I sit a clear fluid comes out. I know that mucus is normal and it is present, but the frequency and amount of fluid coming out is concerning. I have to sit down to urinate because I can not hold this fluid in.

    I was finally accepted to medical school and start in August. My final surgery is June 8th where the loop will be pulled back in. I am afraid that I will feel as terrible as I do now and will be unable to deal with the stress of medical school. Please let me know if you anyone has these symptoms and if I should begin thinking about another plan for my career.

    [Reply]

  34. avatar

    Brevin says:

    April 14th, 2009 at 8:05 pm

    Hi Brian. I haven’t had surgery yet, so I can’t comment on your initial question. But my two cents: If I ever find a doctor who actually underwent a major procedure, I will hunt that doctor down and book in advance. It’s one thing to talk to a doctor, and it’s another to talk to an actual patient who experienced it first hand. Having a doctor with the patient perspective can only be a blessing. Don’t feel the stress of Medical School; I think you’re destined for great things.

    [Reply]

  35. avatar

    Mark says:

    April 15th, 2009 at 6:54 pm

    Hi Brian, I had a huge amount of mucus/fluid. Everytime I would go to urinate I would also empty the mucus/fluid and I couldn’t hold it in either. I was concerned too and told the surgeons but they all acted like it was fine. And when I posted about it on http://www.jpouch.org others told me that they had tons of mucus too. The surgeon mentioned that being able to feel that pressure on my anus while being able to hold it in without any leaking was a good sign that I wouldn’t have leakage once my jpouch was fully function. I had the mucus pretty much the 3 months before my temp ileo was disconnected but towards the end the mucus did seem to slow down some, I think part of it was my jpouch was adjusting and internal healing had happened.

    [Reply]

  36. avatar

    Mark says:

    April 15th, 2009 at 6:58 pm

    Brian, Also, I know it is hard to say now but the majority of people with their jpouch have minimal complications and we tend to all get our lives back. You need to just stick to your plan for medical school and know that you are going through this surgery to get healthy so you can reach things like medical school. Read our stories on this site and you’ll find we all got back to our lives pretty fast (3-12 months range). And Jenelle, she has had some complications and stuff, but she is in the middle of Ph.D. program and her plans have been modified but it hasn’t stopped her from getting her degree – You may want to read her posts she really talks about small setbacks with her school, etc…but she is moving right along: http://www.jpouch.net/2009/02/19/update-for-surgery-round-2/

    [Reply]

  37. avatar

    Julie Cooper says:

    May 2nd, 2009 at 6:28 am

    Hi Mark and Megan,
    You said to let you know when i’d had my ‘takedown’ surgery. Well i had it done on the 21st April and initaily i was very ill post op with a lot of pain and sickness for about 4 days and stayed in hospital for 8 days, now i’m home and it’s great not having to change a pouch daily although now learning to cope and adapt with the frequent b/m’s. I don’t know if others feel like this but i’m finding this quite tough to deal with but i’ve heard it does get better.
    This has been a very emotional journey for me as i realise it is exactly 3 years ago that i started with a flare up of U/C that never went away and this is the end of that journey.
    Despite feeling delicate at the moment post op, i am so looking forward to spending time with my husband and our two dogs,friends and family without the specter of U/C hanging over us and plans for holidays and activities cancelled often at a moments notice.
    Again, finding this site has been invaluable and a great source of inspiration whilst going through my operations, i only wish i’d have found you sooner.

    Thank you so much.
    Jules.

    [Reply]

  38. avatar

    Megan says:

    May 2nd, 2009 at 9:20 am

    Hey Jules, it is great to hear from you again. So glad to hear you are through the surgery phases and now adjusting. Mark had a hard emotional ride in the first few months getting used to the jpouch BMs, especially right after surgery he was pretty melancholoy. It is true that with time the jpouch settles down and it does get much easier. In Mark’s 9-15 month update you can see how time helped him heal – http://www.jpouch.net/2009/01/04/mark-15-month-jpouch-update/

    Stay in touch, Megan

    [Reply]

  39. avatar

    Tina says:

    May 13th, 2009 at 4:55 pm

    Hi everyone!Sorry if I made some mistakes about my English,it s cause I am coming from Croatia..I am Martina,I am 17 years old and I have Crohn Disease.I have temporary stoma since 2003.After six years I am still hopping that doctors will take down my stoma,and you know how they say,hope die the last.I was looking for some stoma help equipment and I came to this page.When I was looking pictures of this people,and read their stories,I found myself in their stories.I saw on yours faces that you never give up..And my eyes teared up,because I am so happy that some of you have finally take down their stoma..I would be very thankful if we can keep in touch,because I am desperate..and I would be so happy if I could hape myself someway,and so that doctors can take my stoma down..So please,give me some information if you can..
    Yours,Martina!

    [Reply]

  40. avatar

    Jane says:

    May 14th, 2009 at 9:47 am

    Hello All, but especially Brian – After a routine colonoscopy in 2007, I was diagnosed with polyposis disease – simillar to FAP because I had a colon covered in polyps of all sizes, but no one in my famly has it, so the docs don’t think my conditon is genetic. At first the surgeon “simply” removed a portion of my colon, so I had a partial colectomy, but I never recovered any bowel function. It turns out that the remaining colon got all tangled up with adhesions and four (sick) weeks later I had the rest of the colon removed and J-Pouch surgery. I was in and out of the hospital for 5 weeks total across a , was on TPN (IV nutrition) for 7 weeks, continuing even after I got home from the hospital. I was very sick, thought I was going to die from the surgery, not from the disease!

    [Reply]

  41. avatar

    Jane says:

    May 14th, 2009 at 9:54 am

    My message got cut off – here’s the rest of the story.
    I did eventually heal, and now, thankfully my small intestine is taking over for the lost function of my large intestine. I only have to go to the bathroom a few times a day, and once during the night, although I often try to “sleep” through that because I don’t want to get up (it doesn’t work to ignore it though…as I am sure you all well know). Recently I had balloon dilation procedure to open up the anastomosis site, and now I am functioning better. I changed my diet to soft foods – the immersion blender is my friend, and that is also helping my bowel functioning. (What bowel? Maybe I should say my J-pouch functioning!) I want to say to BRIAN – do go to medical school, your strength and bowel functioning will improve n time. Rest now, and try to get familiar with foods that will provide nutrition without irritation. You will get increasintly better – the first year after surgery is kind of difficult, but it gets better. Look up Rachel Naomi Remen, M.D.’s writing – she went to medical school after having a lifetime of issues (since childhood) with Crohn’s disease. She is very compassionate and used her knowledge of suffering to heal others. Many of us would choose a doctor simply because he had a j-pouch and understood our issues. By the way, I live in Seattle and I am 55 years old. I appreciate Christine and Ricardo’s story because there is SO very little about surgery caused by FAP!

    [Reply]

  42. avatar

    Tara says:

    May 14th, 2009 at 9:14 pm

    Hi. My name is Tara and I am 19 years old. I was diagnosed with U.C. in 2007 and had surgery in July 2008. I elected to have surgery to create a pouch because the medicines I had tried did not work and I did not want to endure the risks of Remecade. Also, since I was diagonsed I had to be hospitalized frequently for weeks at a time. I had to take medical leave my second semester of collge. Now, 10 months after surgery I still have pouchitis. In December 2008 I developed uveitis, or inflammation of the eye, and had to go on Imuran. I’m still glad I had the surgery because I do not have pain anymore. But i was wondering if anybody else developed uveitis or other symptoms of U.C. that occur outside the digestive system after the surgery, or if anyone experiences chronic pouchitis and what do you know about this? Also, for those who had a succesful surgery, how many times do you find yourself going a day.
    Thank you for your help and sorry if I posted this in the wrong spot.

    [Reply]

  43. avatar

    Mark says:

    May 15th, 2009 at 9:03 am

    Hey Tara, Sorry the trouble you’ve had especially having to stop school. Unfortunately that does happen and we hear it a lot around. I don’t know uveitis, but it might good for Lizz to chime in here because she has had complications after her surgery but that is largely due to her Crohns diagnosis http://www.jpouch.net/2009/04/18/uc-v-crohns-questions/ Now, I’m defiantely not saying you have crohn’s but just saying she has had some major complications that could help you understand yours. I’ve only had pouchitis once in over a year and the cipro cleared it up. Do you take probiotics for pouchitis? And I know some people live with chronic pouchitis, and you should try posting on jpouch.org in the pouchitis section and get their feedback over there.

    My BMs are holding pretty steady around 8 per day with sometimes more or less depending on diet, stress, metamucil/immodium use, etc…Here is my 9 month update that describes all my after surgery “stats” pretty well http://www.jpouch.net/2008/08/08/mark-9-month-jpouch-update/

    [Reply]

  44. avatar

    Aaron P says:

    May 19th, 2009 at 7:53 am

    First of all thanks for making this site. It has been a great resource for me and my wife.

    Second of all, I have this feeling like I have to go to the bathroom that comes and goes with almost no relation to actual bowel movement. It can be pretty intense and is similar to the chill I used to get with UC. It has only been 6 days since my takedown and everything has been great except that feeling. Is this something that other people have. Does it go away? Do you just learn to ignore it?

    [Reply]

  45. avatar

    Mark says:

    May 19th, 2009 at 9:34 am

    Aaron, Glad the site has been helpful for you both, and congrats on the takedown. You know, those first few weeks after takedown were pretty rough on me both physically and emotionally. It was like I was living in this constant fear that the symptoms I was feeling were like UC therefore my takedown was going to fail. Now, none of that was true but it was hard to get used to the feelings of using my anus and bowel again. I had many UC like feelings for about 4 weeks, I had the chill feeling you mention, the anxiety of when next, I had high BMs early on, my anus and skin hurt, I was exhausted because I was up at night going to the bathroom. Then things started to mellow out and then I got used to the new feelings of having my jpouch and now things are really good. In that long answer to you, yes, I had something similiar and I should expect yours will go away with time once your body and mind accept that you are healthy and no longer plagued by UC.

    [Reply]

    avatar

    Mark Reply:

    Chaz and Lori, read this post from me to Aaron. You may also want to respond to Aaron because it sounds like his feelings are a lot like yours. We need to get Brevin in the mix on this topic to see if he is feeling any pressure, etc…right out of takedown.

    [Reply]

  46. avatar

    Tara says:

    May 19th, 2009 at 7:11 pm

    Thank you Mark. That was really helpful. My doctor actually says I might have been misdiagnosed and I might actually have Crohns.

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  47. avatar

    Aaron P says:

    May 20th, 2009 at 12:40 pm

    Thank you so much Mark. All of that has been exactly what I am feeling. I have had myself all worked up thinking that something was horribly wrong and that maybe I had made a very bad decision. Good to know that I will once again be able to do the things I love. (With any luck year round since it won’t depend on a U.C. schedule)

    On a side note to we have any athletes around here that can talk about any new challenges with the pouch as far as running, mountain biking, etc. ?

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  48. avatar

    Paul says:

    May 21st, 2009 at 4:23 pm

    I’ll keep you posted Aaron. I’m going to have my jpouch surgery next month and looking forward to the time I can get back to running marathons, which I haven’t been able to do for years.

    [Reply]

  49. avatar

    Chaz & Lori Burton says:

    May 26th, 2009 at 1:53 pm

    Hello guys, thanks for reading my question. I had my take down last week, May 21 and was out of the hospital 3 days later. Everything was going along smoothly. I started having my bm regularly and the wonderful Butt Burn began. Nothing out of the ordinary until the other day. Sometimes when I go into the bathroom and go I feel like I empty everything and there is a finality to the whole thing. It may take 30 minutes, but I feel like I am done. I can stand up, apply my cream, wipe the tears from my eyes, and go on. But other times in the day I feel like I have to crap all day. When I go in the bathroom I pass a little stool, and then my butt feels like I am pushing a golf ball out of it. I feel like my whole J-pouch is going to come out. I can try to squeeze my butt together, but that is almost impossible, I can stand up, but that feels like someone shoved a stick up my butt, no fun or I can sit on the toilet and moan and wait for the whole thing to settle down. Has anybody else had this in the early stages of the take down. It is like my J-pouch is spazing out on me. I am freaking out because it is so similar to symptoms I had pre surgery. I know this takes time, but please tell me I am not the only one that feels this way. Thanks
    Chaz

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    Eric Reply:

    Hi Chaz, sorry to hear about your issues. I know things can seem rough at first. For me, I had a lot of “leaks” in the beginning, for the first few days, especially at night. Once and a while I’ve noticed if I eat certain things I feel some of the issues you describe. Have you tried changing your diet? This sounds strange, but for me, when things are all off kilter, I get 2 Little Ceasar’s Pizzas and eat pizza for all three meals for 2 days. I’m not recommending that to you, but if you find something that works for you and you can stomach eating a lot of it (and it’s relatively healthy), you might want to try that to even things out. Additionally, they make these attachments for your toilet that are bidet’s you can install yourself. I’ll write up a post on them. I don’t use creams, but I do use the bidet (and swear by it). Hope you feel better, I know this doesn’t answer your question directly, but it’s important to remember that you’re not alone! We’re all going through these things! Hang in there.

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    Chaz & Lori Burton Reply:

    Thanks Eric, I am looking at my diet. I dramatically cut back on things today to see if I can relieve myself from all the gas I was having. It was a better day as far as my intense pressure that I was feeling. Yesterday I thought I was going to crap my pants every 3 or 4 minutes for about 9 hours. It was going on FOREVER (like the Sandlot’s kid.) Today my butt burn is still at level Red, but the bathroom trips have decreased from yesterday. Now I just need to figure out gives me gas???

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    ml Reply:

    Oh all of this that I am learning that may happen and seems realistic to think that it will as it seems everyone has an issue is really freaking me out. I cant imagine being in the bathroom for more than three minutes. I don’t normally have that much time as it is. Any moms out there that could comment on how they handle being a mommy with all of this. I have two little ones. Three next month and 18 months. I really feel like I am going to moving backwards and away from the “good” life I have been living while in 3+years of remission from active colitis.

    [Reply]

  50. avatar

    Megan says:

    May 26th, 2009 at 3:46 pm

    Hi Everyone! Just wanted to make a quick post: my first surgery is this Friday! I decided to have the surgery after losing 2 years of my life to UC. I’m hoping to chronicle the surgery with pictures and imput from my friends and family (for times that I might not remember in the hospital) along with my own insights. Anyway, this site has been a great resource for me these last few months and I’m hoping to use my experience to help others. I’ve started a blog but haven’t got much going on it yet. But since I’ll have plenty of time once I’m recovering at home, I’ll get it all together and post the link here in case anyone is interested! Thanks!

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    Paul Reply:

    Megan,
    I hope all is going well and I’m looking forward to hearing about your experience.

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  51. avatar

    Kanaka says:

    May 29th, 2009 at 10:41 am

    Hi Mark and Megan,
    This blog is very useful. I decided to get surgery done after having struggled with UC for almost 3 years. I got UC while being pregnant with my son in 2006. I never really responded to any medications fully and stopped responding to medications last year. Was admitted in hospital on IV steroids with no impact.
    I had my surgery on April 17th. and have had complications since then.
    Now I am having so much complication with my ostomy!
    1. It stops working on its own and I need muscle relaxant for it to start working. Today, it did not even work after 2 valiums..and had to take one more.
    2. Skin around the stoma is all peeled off and bad. It keeps burning and I am uncomfortable most of the time.

    They want to do my second surgery on 19th June or sooner and I think we have no choice…but a so weak and do not know what to expect from second surgery after all this. I am really petrified about the second surgery especially after my experience of first surgery. I had severe stomach cramps after the first surgery. Still get them, especially when stoma stops to works. No pain killer has any impact on it.
    What happens after the second surgery? How long is it before one can return to normal life?
    Please give me hope…

    [Reply]

  52. avatar

    Alison says:

    June 20th, 2009 at 9:14 am

    Hi, i’m alison and i’m 13, i got my first surgery around a week or two ago and i had to have emergency surgery only a few days after because the stoma wasn’t stitched properly and air was getting into my stomach cavity. Anyways i wanted to thank you for this website because really helped me understand the surgery before i had it done, i even took photos of everything for future school assignments.
    So to my question -i was wondering what tips people have for hiding the ileostomy bag under their clothing…?
    Thanks so much!

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    Brevin Reply:

    Hi Alison! Check this out:

    http://www.youtube.com/watch?v=da0JXlLDBvs&eurl=http%3A%2F%2Fwww.facebook.com%2Finbox%2Freadmessage.php%3Ft%3D1066261979389%26mbox_pos%3D0&feature=player_embedded

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    Alison Reply:

    thanks

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    Brevin Reply:

    Oh, there’s also some extra tips for ladies apparently, so any ladies from this community, please help me out since I’m a dude and all. Erin mentioned this: “About the fancy lady underwear. It’s not specifically for ileo bags. Its so we ladies can smooth out curves and tummies that aren’t exactly in the spots we want. More to make our figures look better, but the nurses suggested them to kind of smooth out the bag. Hosiery is pretty complex to kind of counteract gravity. Tighten up the butt and thighs, flatten belly etc.”
    Someone please help me out here. I’m blushing.

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    Erin Reply:

    Alison, as far as clothing goes I’ve found that dummer dresses do a good job of hiding the ileo bag and tops that flare out from the upper waist down. I found a bunch of cute clothes at Ross and Kohls. That and there are support panties and hosiery that will help flatten it out.

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    Erin Reply:

    I meant *summer dresses hehe

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    Alison Reply:

    thanks so much guys, i did get a pair support panties and they are very helpful :)

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    Erin Reply:

    Good, glad that’s working out for you. :)

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    Erin Reply:

    So, the latest and greatest I found is something called a BeBand. Call me crazy because I happened upon it while walking through the maternity section on my way to the fitting room at Target. I tried it and it flattens the ileo bag out nicely under clothes and is pretty comfortable. The website is on the packaging: http://www.BeByBellaBand.com. I recommend the natural color one.

    [Reply]

  53. avatar

    Erin says:

    June 21st, 2009 at 5:38 pm

    I meant *summer dresses hehe

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  54. avatar

    Erin says:

    June 21st, 2009 at 5:50 pm

    hopefully this works. =) This is my J-Pouch surgery story: http://erinstevermer.blogspot.com/ This website has been insanely helpful for me. I really appreciate everyone’s input.

    [Reply]

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    Eric Reply:

    Hey, glad you have found something useful here. Now that you have your own site, don’t forget to stop in once and a while and let us know how you’re doing! All the best, us Jpouchers.

    [Reply]

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    Brevin Reply:

    This post seems hidden in the message board. Slap this on the front page!

    [Reply]

  55. avatar

    ml says:

    June 24th, 2009 at 3:31 pm

    wondering what a k pouch is compared to a j pouch. Anyone know?

    [Reply]

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    Mark Reply:

    A kock/koch/kpouch is a type of ostomy. The ostomy is inside the body and an open hole is left on the abdomen and then the person sticks a tub in the hole when they need to empty their pouch. They were a small bandage at all times over the kock pouch hole. See site here explain it better: http://ostomy.50megs.com/ostomies.html
    Some people prefer this rather than an external ostomy.

    [Reply]

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    Mark Reply:

    Here is a picture of Becca, you can see her bandage on her belly where her catheder would go when she empties waste:
    http://www.jpouch.net/2008/06/18/a-picture-speaks-a-1000-word/

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  56. avatar

    ML says:

    June 24th, 2009 at 6:09 pm

    thanks for the info. It helped.
    My next questions would be this.
    I have heard a lot about weight loss/gain from surgery.
    What is the norm. It seems some are on steriods and some arent. What is the norm?
    I am not going into surgery with active UC so my weight is stable although a bit high from having back to back baby weight. I am heading into surgery because of high grade dysplasia and length of time with UC (10+years). So really what might I expect.

    [Reply]

  57. avatar

    ML says:

    June 24th, 2009 at 6:10 pm

    meant to say non active colitis.

    [Reply]

  58. avatar

    ML says:

    July 10th, 2009 at 4:54 pm

    so in photos posted while in hospital I see some of you were in gowns and others in normal clothes. Should I pack normal clothes does it depend on how long you will be there? What’s the real scoop?

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    Alison Reply:

    it doesn’t really matter i don’t think, just whatever you’re more comfortable in…i liked wearing my own clothes. i wish i’d brought some nice-ish pajamas for when they make you walk around the hospital, also wearing proper clothes made me feel a lot better
    hope that helps :)

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    Mark Reply:

    Be sure to take a robe so that you can slip that over when you go walking. For me I wanted in my own clothes just so I felt normal and comfortable in and not sick in a hospital gown. But during the first surgery I couldn’t get into my own clothes until the 2nd to last day because I had the cathedar in which meant I couldn’t wear pants easily. During the 2nd takedown surgery I was done with the cathedar on the 2nd day and was in my own clothes. I agree with Alison that it doesn’t matter just what you are comfortable in.

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    Erin Reply:

    I didn’t wear my own clothes because my JP drain was leaking all the time, so I was changing my gown at least 1-2 times per day. I also had these stretchy hospital underwear, so didn’t feel too exposed in the gown. I wasn’t really in the hospital long enough to think about wearing normal clothes. I put some pajamas on 1 time to go to the hospital cafeteria with my mom. I thought the gown was easier because I was hooked up to so many things, I didn’t want to risk getting cords and tubes caught in my clothes. When I was walking around I safety pinned my JP drain to my gown because it felt weird when it moved around. You’ll know what makes you most comfortable when you get there.

    [Reply]

  59. avatar

    ml says:

    July 14th, 2009 at 6:17 pm

    wondering if insurance covers supplies for the stage one portion of what you will need to care for the stoma.

    [Reply]

  60. avatar

    "Harry" says:

    July 16th, 2009 at 10:31 pm

    I have been looking at this site for quite some time now and have decided to finally post something as my GI doc has recommended me to have surgery. My story I might do a short version here and later write the entire thing. Although I have been known to say something like that and then continue on.

    I have had UC 9 years now, coming up to 10 and am 35 years old. As mentioned above, my GI doc has recommended to me that I have surgery to remove my large colon. A bit of history of my UC is when I was diagnosed with it, I was told I had “Acute UC of my entire intestine”. In my now almost 10 years of having it, I can count on one hand (Minus my thumb and pinky) the amount of flare ups I have had. From reading the stories on here and relating it to how bad I was told my colitis is, I feel rather lucky. I have been able to manage mine through diet (Although not always the healthiest) and by taking supplements. But a recent flare up and a food poisoning caused me to do the dreaded hospital trip. Prior to that, my few flare ups were manageable from home. But the recent flare up I had I lost a fair bit of blood, and then some food poisoning about 2 months later which resulted in me needing 9 units of blood was cause for alarm. When I was in the hospital for the 9 units of blood (this was over a 5 day period), I had the “Up Periscope” and “Down Periscope” (colonoscopy and endoscopy) to try and determine the source of bleeding (As this was not the usual flare up, so it was safe to do a colonoscopy). unfortuantely my doc wasn’t able to find the source of the bleeding as at the time of these I had stopped. But there was no tears or anything he could find. I am still pending results from the “Pill Cam” to see if there was something in my small intestine.

    When the doc did the Up Periscope, he found that since my last one, I had developed numerous more polyps. Biopsy’s performed showed that they was no cancerous ones, and showed only minor colitis in my lower bowel. My docs concern from the Up Periscope is that because now of all the polyps that have formed, and due to how long I have had UC, he is worried that he wouldn’t be able to detect any cancer if it were to develop.

    As mentioned, I do not suffer as much from UC as most of the posts on here, mine pales in comparison. But I am wondering if anyone has had the same happen to them and decided to go the J Pouch way due to this? My doc is a fairly respected person in his field and has a very long list of patients and told me I was either the worst or second worst colon he has ever seen.

    What has me a bit freaked out is that I have a beautiful 3 year old daughter and handsome 4 month old son and I want to be around for them and see them grow up, get married, have kids, etc. But being told that there is no guarantee that due to the amount of polyps my doc couldn’t find cancer if it started to grow, that is the part that has me freaked out. Not that I suffer from UC, just that it has lined my colon with so many pseudo-polyps and cancer is almost inevitable. As my doc said; “I am not saying you will get cancer now, but maybe 1 year, 5 years, 10, years. Somewhere down the road you will get it and I may not be able to find it in it’s early stages”.

    So was wondering if anyone has had the j-pouch done for this reason, rather than totally suffering from UC? I appreciate any and all feedback in advance.

    Also, sorry about the novel. Mentioned that I can get carried away. :)

    [Reply]

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    Megan Reply:

    Hi Harry, Sounds like some rough times you’ve been facing. Your Dr. is right that the concern with cancer in UC patients is hard to find because it doesn’t always show up in polyp form, a lot of the time it forms flat on the surface and so if the doctor doesn’t biospy right where there cancer is, they can’t detect it because they can’t see it like a polyp. And if you are forming polyps it is a red flag for cell activity changing in the colon.

    Have you been following ML (Merry Lynn’s) story? She is around your age, and had colitis for 10 years and now has polyps and is having the survery – she didn’t have colitis bad either http://www.jpouch.net/2009/06/19/colitis-to-dysplasia-surgery/

    The good news is that although the surgery process is challenging you can read and see that people do get their life back and go on with a great quaility of life. Which you can have too and all without the worry of colon cancer.

    Stay in touch!

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    "Harry" Reply:

    Megan,
    Thanks for the reply. I had a look at ML and have reached out to her. Really appreciated what you have written.

    Right now, the surgeon is just waiting for my call to go ahead with the procedure, he just wants 4 weeks notice. He is one of the top surgeons for this type of surgery where I am currently living (I am an American living in Adelaide, South Australia). Like ML, guess it’s just getting your head around the fact of having the surgery done even though I don’t suffer from UC.

    Again thanks, and I will definitely stay in touch. Love what this site offers!

    “Harry”

    [Reply]

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    Megan Reply:

    Great to hear from you and glad you reached out to ML. It is great to find others who are in the same situation as yourself. Please stay in touch – we’d like to follow your story if you’d like to share.

    avatar

    Ed Reply:

    Hi Harry,
    I also live in Adelaide and recently had an emergency illeostomy (while overseas), and will be having jpouch later this year (here) and would like to know the name of the “top’ surgeon you saw. I had complications with the first surgery and I want to get the best Doc available.
    Thanks,

    avatar

    ml Reply:

    Harry thanks for coming by my blog. I was wondering if you had one too. I’ve been to Australia and loved it. I was in Sydney for about three weeks and really enjoyed the wine country side.
    Good luck with all you will be going through. My second colonoscopy proved that surgery is needed. Have a great weekend.

    [Reply]

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    Harry Reply:

    ML,
    You are welcome. I think your site is great. I have thought about doing one myself, but that is as far as it has gone as of yet. Sydney is great, prefer there to Adelaide. It reminds me of home (San Diego). Although, Adelaide has lots more wineries.
    Yes I read on your site about your second colonoscopy. I was talking to my GI (Had a follow up appt with him last week) and talked about how it’s just odd that I (and you) have to have a surgery not because we suffer as much as most people with UC, but because of the risk of what a colonoscopy may not find. I am finding that this is my personal battle/struggle with this. I would totally understand if I were in lots of pain, or had to be around a toilet all the time, etc, but to be (For the most part) normal, or feel semi-normal aside from preventative medication, it makes it that much more odd/weird/difficult to come to terms with. Kind of like you are experiencing right now.
    I have a second opinion scheduled, with one of the top GI Professors here. But know that his opinion will be much the same. As I keep being told by family and my doc, and also to myself; although I may or may not ever develop the dreaded big “C” down there, it is probably a better to have it this done as I am young (If you count being 35 young) and have two gorgeous kids that I want to be around for until they are both married and have their own children, and to not have to worry in the future that “Is this the checkup where the find something if they can see it”. Although this is what I am told, it is still kind of hard to comes to terms with.
    If I were able to have the Psuedo-Polyps removed, I would go that route, but since my entire large intestine is covered with them (Been told it looks like the Grand Canyon), it is pretty much the only alternative I have.
    Anyway, I will keep posting on here and look forward to keeping in touch with you and your journey (And mine). My “Second Opinion” is on the 19th of August. So will post what I find out from that one.
    Just like you, got the pics from last colonoscopy also. :) LOL! Sorry for “Dribbling On”. Get carried away when I type. :)

    [Reply]

  61. avatar

    PDXDave says:

    July 24th, 2009 at 3:28 pm

    I had my 2nd of 3 surgeries on June 3 2009, and will have the ileo reversed in September or thereabouts.

    I’m extremely worried about the impact the reversal will have on my ability to work (urgency, accidents etc.). My employer has been patient and gone the extra mile up until now, but I’m frankly worried as hell that this 3rd surgery will be the last straw, an I’ll lose my job if I miss too much work.

    I would appreciate feedback on how the reversal impacted your ability to work, and how long it was before you wre able to return to work.

    [Reply]

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    Mark Reply:

    Hi Dave, It is really common to worry about what will happen with the takedown. My experience was really positive, I had the takedown and had an easy recovery, You can read my recovery here and how long till I was back working, etc… http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/ Also, you should look at Brevin’s post from a few days ago, he was out hiking 10 days after his takedown http://www.jpouch.net/2009/07/23/happy-thoughts-101/ . Takedown gives you the freedom to live healthy and free of disease. Take that worry and make it into excitement (if you can).

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    PDXDave Reply:

    It seems like you had long recovery times. After my first surgery (colectomy), I returned to work 9 days after the surgery. After the second surgery (forming and connecting J-Pouch), It took longer to return to work – 2 weeks.

    If I miss more than 2 days for the final surgery, I can pretty much kiss my job good-bye.

    [Reply]

  62. avatar

    ml says:

    August 1st, 2009 at 5:00 pm

    It’s official…..surgery.

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    Mark Reply:

    Okay, okay, when is it scheduled? How are you doing with this news now that it is decided?

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    ml Reply:

    I am honestly trying to ignore it. I was really hoping that the second colonoscopy would give me a clean bill of help. Maybe I was being a baby about it but I am just not really ready for this. Other than what is going on inside of me you wouldnt think a thing was wrong. No signs or symptoms of UC. They found two different spots that have a greater reading than high grade dysplasia. So it is worse than originally thought. I know have to make an appointment with my surgeon to see what our next step will see. I know he got the report late friday from the GI. I know the surgery has to happen but I am feeling a little deflated because of the hope I had for it to go the other way.

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    B. Malta Reply:

    MARK, I’m not really good with the computer. Did you ever hear of a child having this surgery? My granddaughter is only 8 and is going to have it?
    I wonder if she is going to be able to change that pouch when she will be able to return to school, after all this is over.

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    ml Reply:

    Sept. 23 is my surgery date. The day after my birthday. Boo hoo.

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    ML Reply:

    surgery postponed til november 17th

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  63. avatar

    Alison says:

    September 8th, 2009 at 2:28 pm

    Hey everyone!
    So, i just got my second surgery done on friday and i’m doing alright. Due to some problems in the past and the fact that i now have a loop ileostomy i have a rod. But talking to one of my mom’s friends, found that not all of the rods are the same. His went straight across horizontally and mine is like a big loop vertically. I’m really not liking it i have to admit, it’s kinda painful and makes it hard to conceal. Ok, so to get to my question, i’m supposed to be going back to sick kids on monday …or next monday (haha, i’m not so good with dates) in 10 days anyways. And i thought that to take it out they just had to pull it out like the NG tube, but i just completed my first bag change post op and that doesn’t seem possible. i’m kinda worried now, how do they take out the tube and will i be put under?
    srry for the kind of long winded question, but thanks so much for the help :)

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  64. avatar

    Kanaka says:

    September 23rd, 2009 at 11:15 am

    Hi,
    I had my take down surgery on June 17th. Since then, I am trying to balance my diet & fiber supplements to reduce the number of stools. One thing that I am experiencing, which I did not read anyone else having is
    “itching and burning in anl area”.
    I take benefiber for fiber supplement. If I take it 2 times a day, I have 5-6 stools max (mostly formed). If I take more, like yesterday, I took 4.5 tsps and and my stools were more liquidy.
    And by end of day, my anal itching is unbearable, sometimes it starts to burn. My doc suggested to increase fiber, but am not sure it helps. I do not use toilet paper any more, but use water and then use a hair dryer to dry it up most of the time or a dry tissue to wipe the water. I apply desitin (EPC) after every bowel movement.
    Please let me what you have done to help overcome this.

    thanks so much,
    Kanaka

    [Reply]

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    Mark Reply:

    Hi Kanaka, Sounds like you are doing well overall adn that now you are in the tweaking phase of learning what works best for you. What you are calling “itching and burning in the anal area” is what we all call so blatantly “BUTT BURN.” There are a couple things I could suggest for you to consider (1) Learn more about fiber supplements because i was told in the hospital to use Benefiber ONLY when I had the ostomy and to use Metamucil when ONLY when I had the takedown. Apparently Metamucil will make you too thick when you have the ostomy and works better after you have the takedown. (2) As for the butt burn when you get your fiber regulated, you might also want to try slowing your system down by using something like immodium, that will cut down on some BM’s. and (3) Your bathroom cleaning process seems like a lot of work, you might want to try NOT WIPING but pressing to absorb the waste and then use a wet wipe to clean the waste residue. (4) There are a ton of cream options out there and you might want to try exploring other options, I go inbetween being a fan of Tucks cream or my ultimate favorite cortizone cream. (5) Hang in there, you sound great and now just need to find the right formula that works best for you.

    [Reply]

  65. avatar

    Colin says:

    September 28th, 2009 at 10:00 pm

    I’ve had UC for two years now and I’ve pretty much failed at every medicine. I’m done with two doses of Remicade and haven’t noticed any real improvement.

    So, I called my doctor at the Cleveland Clinic last week and he set me up to talk to a surgeon. I’m scheduled to see him on Wednesday, and I’m trying to lay out a bunch of questions. I’m not really 100% sure what to ask him, but I’ve tried to gather ideas from the site.

    I’m not sure if I’ve been lucky with my UC or not. I’ve never lost any weight or thrown up during the time I’ve had it. I just start every day with 6-7 BMs and then another 3-5 after my first meal. Basically, my biggest problem has been the fear of urgency. I’ve had a few accidents while working (I’m a sports writer, so going in your pants while out covering a game is a nightmare), but I’ve been fortunate to not be *as* bad as some others on the site.

    Would the people here who’ve had the surgery say it’s worth it for someone like me? I’m kind of scared about the surgery as I’m pretty young (24) still. I live alone and only have my family, so I don’t have a relationship partner to fall back on for support.

    I’m kind of worried what I’ll become post-surgery will scare off anyone I try to settle down with in the future, if that makes sense. I can keep up a half-decent lie about being *normal* right now, even if it’s a strain on me physically sometimes.

    Thanks for any help, guys.

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    ML Reply:

    I think your fears are real and the same for someone with a partner. I have been married 6.5 years. And while the first three were plagued w/active colitis we had a reprieve for the last 3.5 with remission and now having to have the surgery because of high grade dysplaisa and age of disease (had it over 10 years.) My fear is that after surgery things “wont” be normal. I will look different etc. How will my husband see me and love me. I think it will all boil down to faith that this two shall pass and for you I think you will need to have faith that you will be healed and love will find its way into your life.
    When you say you have tried all meds does that mean your doctor has recommended the surgery? Most doctors dont dish out sulfasalazine as it is a really old U/C drug (most cant stomach) but it worked for me and no “new” drugs worked for me. You could always ask to give that a try prior to moving along to surgery. Hope you have a good day.

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    Colin Reply:

    Thanks for the help, ML! Well, I failed at Remicade after trying Azathioprine, so my doctors at the Cleveland Clinic told me that surgery was my best option. I met with a surgeon a few weeks ago, but he only performs the procedure via open incision, so I’m going to meet with a second surgeon there who performs laparoscopic operations. I’m hoping that that is the agreed upon course because, at 24, I’m not comfortable being A) single and B) having a gigantic scar that might make people roll their eyes. I know that sounds superficial, but it’s just something that’s worrying me.

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    ML Reply:

    Well just make sure that the surgeons you are interviewing are actually colorectal surgeons as just being a surgeon isnt what you want. I only say that because that info was passed on to me. Also remember that they may have all good intentions of laparoscopically but may have to change the course once they get in there. That is what I was told by all three surgeons that I interviewed before I decided on the one I wanted to be “my guy.” I am 39 and dont want that big nasty scar either so I “get” what you are saying but remember a scar can be reduced far easier than still being sick. But seriously I understand what you are saying. Feel free to hop over to my surgery blog. ML

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    Colin Reply:

    ML,

    The two surgeons I’ve talked to there are colorectal surgeons, os all’s well on that front. Luckally, my cousin is a gastro doctor at the CC as well, so the two surgeons I’ve talked to come highly recommended from her. She told me the same thing about not being able to guarantee a laparo surgery once they get me in. I’d like to take that risk rather than know for a fact that it’s going to be open, you know? Thanks again for the advice.

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  66. avatar

    scott says:

    October 7th, 2009 at 8:48 pm

    I need help. Just had first surgery 1 mo. ago. I can’t do 2 more months. Have great wife, she doesn’t deserve this burden. the despair and hurt is unbarable. I NEED help!!

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    Alvaro Reply:

    scott – hang in there, pal. the months between surgeries were the worst of my life, but you make it through and keep going. keep moving forward. practice meditation – sounds cheesy but close your eyes and think of nothing else except your breathing for 5 mins. bump it up once you have it down. try putting a very hard puzzle together with your wife, and then another, and then another. write a journal. write a story. Anything just keep going forward! you’re almost there!

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  67. avatar

    scott says:

    October 8th, 2009 at 7:24 am

    How do you meditate (Seriously, i can barely sit for dinner). Thx for the reply, it means alot. I’m struggling!

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    ML Reply:

    Scott where is your pain? I have not had surgery yet but will in November.
    As far as meditating think of it this way. meditating and worrying are the same mechanically speaking so if you can worry you can meditate. Just change your thought process. I know easier said than done. My thought is that going through counseling would help. just to be proactive I have done some counseling prior to surgery just to make sure I am thinking clearly about what I am about to undergo and to discuss the burden I insist this will lay on my family. One husband and two babies and a mother who will come to care for me and my family while I am healing.

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    Scott Reply:

    I’ve been able to get yhrough maybe 2 min. of meditation. For me its very difficult.

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  68. avatar

    scott says:

    October 8th, 2009 at 8:24 am

    I guess the “p.c. thing to ‘say is ‘ its going to be a walk in the park’. You want honesty….it sucks….but when alll is said and done….. you probably needed it done. It stilll sucks. The only redeaming quality is…pain medications. I dont want to scare you, but, get ready. You will remember this!!!

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    Mark Reply:

    Hi Scott, I totally understand your physical and emotional pain. However, the only way to heal and get back to living a healthy and happy life is largely our attitude to the situation. There is a saying that when we stop fighting the way we want our life to be then we will lessen the pain because we don’t have expectations. You may want to seek some counseling to talk about ways to work with managing chronic disease the related stresses. I have done therapy, I know my wife experienced some Post Traumatic Stress behaviors from all the stress of living with my disease and the culmination of surgery, related complications, etc…. all I can say is that it can improve and it will improve but you have to be willing to seek help where needed. and we are a wonderful support community – but seeking help from professional counselors in chronic disease coping could probably really benefit you. Hang in there, it always improves.

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  69. avatar

    Colin says:

    October 10th, 2009 at 8:23 am

    Hey Mark,

    I haven’t seen any recent pics from your surgery. How are you laparo scars healing? That’s a route I’m going to talk to a surgeon about soon and as a young person myself (especially one still trying to find that “special someone”, long-term scarring is something I’d be lying if I said I wasn’t concerned about.

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    Mark Reply:

    colin, see reply below.

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  70. avatar

    Mark says:

    October 10th, 2009 at 4:26 pm

    Hi Colin, It is funny you say that – we’ve been planning to do my 2 year. We will do a post soon on my 2 year with some photos. But there really isn’t anything idffernt now than at my 1 year and after posts. My scars are as good as I think they will get which in my opinion looks pretty good. http://www.jpouch.net/2009/01/04/mark-15-month-jpouch-update/ I really think the lapro scars would impair your ability to attract someone, they are minor scars when all is said and done. I think trying to date while having UC would be way harder than trying to date with a few lapro scars.

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    Colin Reply:

    I appreciate the speedy reply, Mark. Yeah, the scars at the 15-month update look pretty darn good. I guess I’m just jumpy sometimes because it’s hard to explain UC to someone you’re still trying to form a relationship with. I don’t expect people who’ve never had it or gone through similar surgeries to understand sometimes.

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    Colin Reply:

    …So if I could “limit the damage” as much as possible, I guess my loopy mind has made it seem like the best option.

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  71. avatar

    Harry says:

    October 11th, 2009 at 6:24 pm

    Hey all, sorry I haven’t posted in a while. Not sure if you remember but I was facing surgery due to cancer prevention vice suffering from UC. Well, I finally have had my consultations, one with the Surgeon and one a second opinion. the final decision for me was not to have the surgery at this time. Although my entire large intestine is affected with UC, it was decided that since I do not suffer (As I have previously mentioned, I have had maybe 4-5 flareups since I was diagnosed in 2000), and I am not having to take steroids, it is best to wait at this time. My doctors have agreed that using NBI yearly with colonoscopy they are confident that this technology will be able to find anything if it pops up. Even though my large intestine looks like the Grand Canyon. :) 

    Also we discussed the tumor prevention capabilities of my maintenance drug I am taking (SaloFalk). Since I am only starting to come up on my 10 year anniversary of UC, all the docs agreed that there really wasn’t too much of a benefit at this time for me to have the procedure done. I hope ML is doing ok out there as I have not heard from her in a while and have lost the link to her website. :( 

    So at this point, I will keep on trucking, and look forward to seeing my GI at least once a year (Be almost like a family reunion. LOL!) and hope non of my biopsies come back other than “Normal”. I would be more than happy to assist anyone that is in the same predicament that I am in (Surgery recommended not for suffering, but for potential cancer risk). I promise to keep in touch and look forward to hearing and reading to everyone’s story on this awesome site (Thanks Mark Megan). Catch ya all soon.

    Harry

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    ML Reply:

    Hey Harry it’s ML
    Click on my name and it will take you to my blog.
    That is great about the option not to operate. I wish I would have gotten that news back in August. As I am not suffering but had those nasty little too close to cancer cells show up with 10++ UC insides. My surgery was pushed back. You can see that on my blog. Stay healthy my friend and stay tuned to what happens over at Thirtysomething. ML

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  72. avatar

    Denise Duhamel says:

    October 13th, 2009 at 11:27 am

    Hi, my name is Denise Duhamel, and I’m from a little town called Lively in Ontario, Canada it’s situated about 4 hours north of Toronto. I’m a 39 yr old female and I had the 1st and 2nd j-pouch surgeries in the last year. My 1st surgery was October 28th of 2008 and only 10 weeks later I had the 2nd surgery and I cannot say enough about how this surgery has changed my life for the best. I was diagnosed with UC over 10 years ago and was always told by my doctors that I would need surgery at some point in my life but I was in full denial and pushed it back as far as I could, I just could not imagine having my colon removed. I would have flare-ups that would last up to a year and with the help of steriods and enamas and many other medications I would always go into remission and then thought, well I made it through again without surgery. Until 2 years ago, I went into a full flare-up and within weeks I was very sick and back on steroids and Immuran and pentasa and enemas, not being able to play with my kids or leave my house. This disease really makes you a prisoner in your home, the pain is sometimes too much to take, I would always say that I felt like I was going through full labor pains every time I went to the bathroom which on somedays about 15 to 20 times a day. I was so scared because this flare-up was not going away and the steroids were’nt working, I started going in for some Remicaid infusions thinking this was my last resort before surgery, my last chance to save my colon, it never worked. One morning after spending a few painful hours going back and forth from the toilet to my bed, I finally decided that I was no good to my family this way, my poor husband was so worried about me and couldn’t concentrate on his work, he had taken on the job of caregiver, the only bread-winner and full-time father and it was taking it’s tole on him. My kids had to be self-sufficent most of the time because I couldn’t do much for them, I was in bed or the bathroom in the morning when they left for school and in the same situation when they got home from school. After being a stay-at-home mom since my kids were born, I couldn’t stand the thought that I couldn’t take care of my family anymore. I still remember that morning, I had gone to the bathroom and had lost alot of blood and I could hardly make it back to my bed, I was so weak, I picked-up the phone and called my husband at work and told him that I couldn’t do this anymore and that I was ready to have the surgery. He told me to call the doctor and that he would be on his way home soon. I called my specialist and he told me to go to the emergency room and that he would meet me there. When we got there, the nurse took me right in and I was seen by an emergency doctor right away, my blood pressure was very low and I kept fainting, I had no energy left. They admitted me right away, but there were no beds available so I spent my first night in the ER. The next day, they started me on TPN which is total intervenus nutriton through a pick line that went through the main artery in my arm. I was also on heavy doses of Steroids and I couldn’t eat or drink anything, because they wanted to give my bowels complete rest. I spent the next 15 days in the hospital, they were trying to put my body in remission so they could send me to Toronto to see a surgeon at Mount Sinai, where they have the best doctors in Canada for this type of surgery. I went into remission and was sent home feeling much better and I got stronger every day. This all happened in late April early May of 2008, by July 2008, I was fully recovered but I knew that the surgery was the only option before I went into a flare-up again. I went to see Dr. Robin Mcleod at Mount Sinai in Toronto, and after meeting with, we both agreed the surgery was my only option. We scheduled it for October 28th 2008. I was lucky because, I was still in remission, so they were able to perform the surgery laproscopicly and everyting went well. I was in the hospital for 14 days following surgery, it took longer then normal because my body was outputting too much, and I was always dehydrated so until it showed signs of slowing down they wouldn’t let me go home. We finally came home on November 12th and I was never so happy to get home to my kids, they had stayed home with my parents and my in-laws . I had not seen my kids for 3 weeks, it was the longest 3 weeks of my life. After I got home, it took me awhile to get used to the iliostomy bag, but with a nurse coming to help once a week I quickly got the hang of it and soon I didn’t think it was so bad. The only thing I could think of was that all the pain was gone and that in itself was a miracle to me. I healed very quickly and was able to have the 2nd surgery in early January 2009 only 10 weeks after the first surgery. Again, I had to go back to Toronto for that, they don’t perform this type of surgery in my town. The second surgery went well but I didn’t realize how hard it would be to go through 2 surgeries in 10 weeks it was the hardest things I’d ever done but I would do it all over again. I took a good 3 to 4 months for my body to get used to the pouch and for the pouch to work well. Now after almost 1 year since my 1st surgery, I feel so lucky and blessed to have had this surgery and I would recommend it to anyone who has UC, or any other colon disease. It’s alot to go through but in the end it’s totally worth it. Sometimes I joke with my husband and say why does anyone need a colon, everyone should get rid of it. I know it’s silly, but for me it was the best thing I could of done. I got my life back, my kids love that now I can play with them, we can travel again, we can do whatever we want, life is good.

    Thanks for lisening, it was great to share my story with all of you,

    Denise

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    Colin Reply:

    Wow, that’s an amazing story, Denise. I know exactly how you feel with regards to just being beaten down everyday. With UC, you lose so much blood and expend so much energy in the morning hours that it takes everything you have to just get out of bed sometimes. I’m so happy to hear that the J-Pouch has worked for you and it’s given your life back. I hope I can experience that feeling as well in the coming months.

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    Denise Duhamel Reply:

    Hi Colin,
    Are you going for surgery soon? If you are, I can only tell you that for me, surgery was a miracle, it was the most frightning thing I’ve ever done, and I pushed it back as far as I could, because I just was too scared, but now that I’m cured, I wished that I had done it earlier. I won’t lie to you and say it was easy and painless, it wasn’t, but look at it this way, short term pain for long term gain. You will have some pretty bad days and you will ask yourself why you did it, but within a few short months you’ll look back and say, it was all worth it. I wish the best and make sure to let us know how you make out. Take care.

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    ML Reply:

    denise, thanks for sharing that story. My question to you is one how old are your kids? two now that you have your j pouch about how many times a day are you in the bathroom? I know that must sound totally personal but on the other had we are posting on a board where personal bodily functions are discussed. With that being said here is why I ask you. I have two children just three and almost two. I have been in remission for over three years now. You wouldnt think I was ever sick with this terrible disease (UC). I have been very thankful for that time as I know it is like a ticking time bomb. So basically I function like a non uc patient with maybe three trips to the bathroom a day. So unlike my active colitis days. I was never sick in the way you explained. You poor thing. I did lose a lot of weight and was weak but than again, I have been so far removed from being sick that maybe I have forgotten. I do know that I was luck in the fact that I never had to have a blood transfusion and I was on steriods twice and winged quickly. I will say that is a wonderful and terrible drug at the same time. I will be having surgery in November to remove my colon not because my disease is active but because of high grade dysplasia showing in such a young person and with having UC for over ten years now. I am struggling with the fact that I will be going backwards as all of the surgeons that I interviewed so nicely said I would. Meaning I have been living almost like I didnt have UC and now I will “mentally” be sick again because my frequency will make my mind believe I am ill again. I hope that made sense. Basically because I hardly go now, I will be in the bathroom more w/j pouch than now. So I will go backwards. They all said how sorry they were. GREAT!
    So already knowing that I will not be able to be completely hands on with my kids for the first six weeks is already killing me but the worst part is not knowing how my body will cope with the j pouch in place after step two is complete. Dont get me wrong. I want the surgery if it will save me from colon cancer and not being around for my kids. But I suppose there is a price to everything. I dont want to lose the quality of life I have now. So from mom to mom please tell me more about the recovery portion with kids once you were home and now how it is going. I would really appreciate it. Also if you click on my name where it says ML reply it will take you to my blog. Feel free to stop by. Thanks.

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    Denise Duhamel Reply:

    Hi ML, My kids are 12 and 14 years old now, and they’ve seen me suffer for the last 10 years. I too would go into remission for 2 to 3 years at a time and feel completely normal during those times, but with every flare-up, things always seem to get worse. I know my girls are older and thank god for that, because had they been younger it would of been pretty hard to function, that’s the big reason why I kept pushing the surgery back with every flare-up I had. Right after the closure, the second surgery, I went to the bathroom alot, I won’t lie to you, it’s overwhelming in the beginning, you wonder why you did this in the first place, but be strong and keep looking ahead, it does get better with time, it took me about 3 to 4 month before it felt normal. I would go about 20 to 30 times a day in the beginning, because the pouch can only hold about a tablespoon at first, but the longer you can hold it in the better because it allows your pouch to stretch. Now 9 months after surgery I go to the bathroom about 6-8 times a day, but it’s fine, because it doesn’t hurt, no cramping and really no urgency, you just feel full and you go. The only pain that I’ve felt was the burning because you go so often and because it’s always pretty liquidy. It also depends on what you eat. I know that watermelon makes me go like crazy, so if eat it, I know what’s going to happen, but again no pain so who cares right? That’s the great thing, you can enjoy the food that you had to give up when you were sick. For a whole year before my surgey, I couldn’t eat any fruits or veggies, no fiber it was pretty aweful, I was drinking alot of ensure just to get my nutrients. Now, I can enjoy whatever I want, when I want and I love it. When I went for surgery, I was in full remission and yes I agree with you that you feel like you’re going backwards, I felt great but I had to keep reminding myself of the pain and suffering I had just gone through before and my family kept reminding me as well, they were really the reason why I did this, because I simply was no help to anyone anymore. My life is my kids and my husband and being sick like I was I couldn’t be the Mom or the wife that I wanted to be. It is a real though thing to go through, but I can’t stress enough how it was all so worth it for me and my family. I’m a bit of a control freak when it comes to my kids and my life, I like to be in control of what’s going on, like the family schedule, driving my kids here and there,I don’t like to send them with other people and when I was sick and recovering, the most important thing for me to realize was to let your friends and family help you with all that. It was really hard, I don’t like to depend on other people, especially when it comes to my girls, but, you really need a good suppport group and I was so lucky to have great friends and family that stepped in when I needed them the most, I will always be greatful to them for that. I wish you the best, and remember short term pain for long time gain, you really are cured after and you will look back and say I would do it all again. Life is good. Hope this helps and if you have any other questions please feel free to ask. Take care.

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  73. avatar

    Denise Duhamel says:

    October 15th, 2009 at 12:45 pm

    Hey Colin,
    I know you’re really worried about the scaring and I totally understand that, as a women that was one of my biggest issue, I didn’t want the scars. I was lucky enough to have the surgery laproscopicly and I had 6 very small incisions that you can’t even see today unless you really look for them and then I had one about 4 inches long that noboby can see except my husband and I and then when I had my take down it left me with a 3 inch scar just to the right of my bellybutton and that one healed nicely but I won’t wear a bikini anymore but who cares right? I’m gonna be 40 in November and could still pull it off if I didn’t have a scar but I can live with that. When I look at the other option which was no surgery, I would still have UC and still be suffering with all that pain and be on all kinds of medicine for the rest of my life and who knows maybe even develop colon cancer. So all in all I made the right choice and I’m so happy I did because now my life in wonderful, I’m not sick anymore, I can eat whatever I want, I don’t take any medications anymore and life is so good. Stay strong it will get better.

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  74. avatar

    Alison says:

    October 15th, 2009 at 7:26 pm

    hey everyone!
    so i had a couple of questions, first, has anyone ever had a catheder inserted into their stoma for xray purposes? i just saw my surgeon today and she told me that that was how they would insert the dye into my jpouch to check for leaks. i’m asking because i was worried if it would hurt…? it sounds like it would, but then again so did getting that rode taken out, but i couldn’t even feel it :]
    my second question was, how difficult have you found it adjusting to your jpouch? i’ve read all the blogs relating to this and i know it’s different for everyone, but i’m getting a little nervous about going back to something that seems a lot like what i had to surgery to get away from.

    lastly, i just wanted to help spread the word. anyone ever heard of jessica grossman? she’s been doing a lot for ostomy awareness in canada right now, she’s started a campaign. it’s very amazing. the website is uncoverostomy.com and the link to the fan page on facebook is http://www.facebook.com/uncoverostomy?ref=ts

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    Mark Reply:

    Hi Alison, The first two weeks after my takedown where a little bumpy both emotionally and physically trying to get used to my jpouch. I think more than anything the hard part was having to deal with using my anus again for BMs. Life with the bag was so easy. but once I got over the adjustment phase in the very beginning of the jpouch, everything has been incredible. Life is good, really good 2 years out with my jpouch. Zero regrets and well worth the couple weeks of readjusting to use of anus for BMs after ostomy. We’ll look into Jessica G., a good advocate is always great to find.

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  75. avatar

    Denise Duhamel says:

    October 16th, 2009 at 4:23 am

    Hi Alison, I never had a catheder inserted into my stoma, when it was time to check my pouch for leaks, the surgeon did a pouchagram which was like a sigmoidoscopie, a small tub inserted through my bum and into the pouch from there, and then they take x-rays that way. It was very painless, I thought that I would never have to do the whole colonoscopy thing ever again but it really wasn’t that bad. I’m sure that going in through the stoma isn’t too bad either. I just had my take down in January of 2009 and the doctors are not lying to you, it does take awhile for your pouch to stretch and hold more then a tablespoon and you do wonder why you did the whole surgery thing in the first place, I had those same feelings, but just remember this is the last step, one last push of patience, try and be strong. Remember to really put alot of cream on your butt because you feel like your on fire all the time, i found that taking a warm epsom salt bath would soothe the bum area when it got too bad. The doctors had told me that it would be about 4 months before the pouch stretched and I was really depressed, I felt like I would never get through this, but after about 3 weeks to a months it started getting better and within a 1 month and a half my husband and I took the kids to Florida for a vacation to visit my parents. I was still going about 8-10 times a day but, it doesn’t hurt, you can control it, it’s really not that bad once you get used to it. it’s been about 9 months now and I still go about 6 times a day, but I know when I eat I will have to go shorthly after, and I know that if I eat too late in the evening I’ll have to go during the night, so I try not to eat after supper. It is totally worth it in the end, you get your life back and you feel normal, like you never had uc in the first place. I hope this helps, if you have any questions, please feel free to ask.

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    Alison Reply:

    Thanks so much! i feel better about all this now

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  76. avatar

    scott says:

    October 18th, 2009 at 6:13 am

    ive read, and what you are about to go through……………is probably bettet then now. I could be wrong, but what we go through sucks……but we have to do that. I’ve had a rreally bad week so me, and my stama, would like to spread SOME joy. I was told i can be negeitive. I hope thats not true Mayby i just suck!

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  77. avatar

    scott says:

    October 20th, 2009 at 6:43 pm

    I just wanted to thank everyone for their comments and inspiration. Especially you Mark ( we had a rough start from my disrespect). No commment now just constant …..dispair. My wife thanks you too.

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    Mark Reply:

    Hey Scott. — Welcome to the community! I’m so glad the site and feedbackc has been helpful for you and your family. These are really tough times right now and you’ll need all the support you can get. What is great about us is we are the people that understand when non-disease people struggle to understand. I can promise you that with time you will feel better, and you will get back to a healthy and happy life. My life the past 2 years with my jpouch has been so greatly improved – I am healthy and happy. I’ve had a few complications, etc..but nothing that compares to 7yrs of UC. If you have time, why don’t you tell us your story on the message board where people share their stories . Maybe your wife can post her journey too – I might help for you guys to write your experiences. WE have lots of actives signifcant others on the site (without Megan, I couldn’t have gotten through this so well)
    http://www.jpouch.net/surgery-photos-your-story/

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  78. avatar

    scott says:

    October 23rd, 2009 at 4:10 pm

    Hey Mark,
    Thanks for the reply. My story huh? I be as breif as I can. On Jan 7, 2003 i began having strong stomach pains one night. i thought I had to go #2. It lasted maybe 2 days, then subsided. i got married, mother died (not because I got married, I think) and in March Ibegan to have the same pains, noise, bloting. Took a laxitive but the pain continued. I couldn’t really “go”. Finally three days later, I couldn’t take it anymore. I told my wife, ‘time to go’! she said where. I said the hospital. She had never heard me say such a thing. Jumped up (her not me) and we went. After hours of poking and proding. They came to the painful conclusion that they didn’t know. Now let me be clear; I was 30 years old and they thought that i was having a appendix attack. They prepped me for surgery, had me drink some horrible stuff and then stopped. Two hours letter a doctor I had not seen before, said I had diverticulitus. ‘What the hell is that’ I said. after a short explaination, they wanted to admit me because I was the youngest person they had ever seen with the disease. My stubborn ass said ‘I’m going home’. As i left the doctors were pleading for me not to leave. As time went on i had a flare here and a flare here; maybe twice a year…..then 2008 rolled around. It went from monthly to bi-mothly to weekly(some episodes being worse than others). The pain was unbarable. Early 2009 my doctor said it was to to see some specialists. I did. Dr. Cowen, Dr. Raju, and finally Dr, Kassenbrock. Through the whole doctor journey; after ct’s xrays, mri’s, colonoscopy and everything else; I was referred to the surgeon Dr. kassenbrock. As we sat there he read all the tests. Looked up and said ‘you are really f***ed up”. That was the first time I actually felt good (wierd huh). We scheduled surgery and then the insurance probems began. No not bore yoe further, in Aug, I began having pain in my pelvis, different from the normal terribal pain on my left side. The infection had spread to my gall bladder, regular bladder and was moving fast. I began pissing blood and poop because I had a fistula between my colon and my bladder. Yeah, I said pissing poop. After going to the ER The doctor said he had never seen what was happening to me. Admitted me immediately. Dr. Kassenbrock came and said he wanted to do the surgery with Dr. Tay to repair the bladder and finnally remove the infected portion of my colon. this was Sept 4, 2009. A colostomy bag, a cathador and 12 inch scar later I am here in great dispair not being able to see the finish line. I’m tired of hurting, tired of the bag, tired of putting my family through something they didn’t sign up for. still fighting with insurance. If i can’t get my insurance straight, I only have anger and hate in my heart. thats sooooo not me! I here though and I see the finishline, but without insurance we will have to sell our house. I’M NOT WORTH IT! I wish my story had a happy ending, now, but ijust try a stay positive and try not to smell to bad (hahahahahah). Thank for your time

    [Reply]

  79. avatar

    ML says:

    October 24th, 2009 at 7:28 pm

    maybe I am just freaking out but maybe not. I am under the impression that I am going to have j pouch surgery in two steps. However today in the mail I got a note from the doctor’s office with the breakdown of the copays and all the insurance stuff. The listing of surgery said “total protecotomy.” So I guess my question is this….Is this just what the first step is called? When I opened the envelope today it was after the office for my doctor was already closed. Let me know what y’all know please.

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    Megan Reply:

    Hi ML,

    Yes, the first step is called a total proctocolectomy – there should be some mention of the IPAA or ileoanal reconstruction part. Even though you are having 2 steps you will have your colon remove first and during that surgery they will form the jpouch. I know with Mark’s paperwork it always said IPAA and then a bunch of jargon we didn’t understand. Sounds like your paperwork is fine, just call on Monday to ease your mind. Oh yeah, insurance only approved step 1 first, then when it was time for takedown they approved that surgery.

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    ML Reply:

    called the doctors office and we are all on the same page for the November surgery.

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  80. avatar

    Katy S. says:

    October 28th, 2009 at 11:03 pm

    I want to thank everyone who is posting stories about their unique experiences with ostomies, surgery, managing their illnesses, and dealing with LIFE! I am studying to be a WOCN (wound, ostomy, continence nurse) right now and I appreciate getting all the different perspectives in a very candid manner. I do not suffer from these illnesses but your stories will undoubtedly help me be more compassionate and understanding of the patients I hope to serve in the near future. Thank you!

    [Reply]

  81. avatar

    Kim B says:

    October 29th, 2009 at 3:36 pm

    I would like to thank all that posted to this site. I had j-pouch surgery in 2005, a few ups and downs, looking for more ways to improve life with j-pouch.

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  82. avatar

    Scott says:

    October 29th, 2009 at 4:12 pm

    Thank you for your concern, diligence, and forethought. Thanks

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  83. avatar

    ML says:

    November 3rd, 2009 at 12:28 pm

    first surgery in 14 days. feel free to follow my surgery journey at my blog.
    ML

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    Danielle Reply:

    Good Luck ML! Heal fast and well. Be sure to stay as positive as possible even when things get challenging.

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  84. avatar

    huskerharry says:

    November 3rd, 2009 at 9:20 pm

    Hey ML! Best of luck. Not sure if you saw my last post saying I didn’t need surgery at this stage. I will definitely be following your journey!

    Again, best of luck!!

    “Harry”

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    ML Reply:

    Hey thanks Harry. I saw that you are following my blog. Glad you arent having to do this. I wish I would have gotten a stay of execution so to speak. less than 48 hours now.

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  85. avatar

    Colin says:

    November 14th, 2009 at 11:25 am

    Well, I’m scheduled for my first surgery on Wednesday, Nov. 18 (five days!!) I’m not going to lie, the surgery itself doesn’t scare me. I’ve never had any major operation before, but I’m confident I can deal with that. What *does* scare me a bit is the idea that this might not be the silver bullet I’ve hoped for. This whole time I’ve had UC, medication after medication has come through me with the promise of making me healthy. In the back of my mind, though, I knew that I always had surgery if the pills didn’t work. Now that I’m looking at surgery, what frightens me is the idea that not even *this* will work. Is it normal to be scared like this? I guess I’m trying to say that, I mean…What do I do if this surgery doesn’t even *fix* me? Where do I turn then? Maybe I’m just so beaten down by UC that I’m thinking crazy, but it’s something that’s keeping me up at night.

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    Mark Reply:

    Hey Colin, Yeah, your concerns about the “what if” this doesn’t work is completely normal and warranted. By the time we get surgery we are so used to medical failure that it doesn’t seem possible this surgery could be the magical cure. BUT…the good news for 95% of most people who have this surgery it IS the magic cure. Just visit our home page (www.jpouch.net) and you’ll find updates from me, Brevin and Lizz. All of us are living normal, happy and healthy life. I can do anything I want physical, no urgency, few complications, and I am no longer sick. I don’t even remember the man that lived sick with UC for 7 years. I have zero regrets other than not having this surgery sooner. Keep us posted on your recovery.

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  86. avatar

    ML says:

    November 15th, 2009 at 7:11 am

    tick tock, tick tock. 48 hours until surgery.

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    Brevin Reply:

    DON’T FREAK OUT! DON’T LOSE YOUR COMPOSURE! KEEP COOL! KEEP $#@&ING COOL! *throws a chair at the wall* SO COOL! ARRGHHH!!
    Seriously though, this is very exciting. It’s just the first step in journey that will course correct your entire life. Amazing stuff.

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    ML Reply:

    Thanks B. Just a little freak out this morning but so far so good today. I am thinking tomorrow might not be so easy as I pack my bag, drink my clear liquids and cleanse. First surgery Tuesday morning! My surgeon better have gone to bed early so he is well rested. Grin. My final meal tonight…..OUTBACK!!!!

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  87. avatar

    ML says:

    November 15th, 2009 at 8:09 pm

    Let’s be realistic. My doctor said most his patients are home on day three after Laproscopic surgery (1st of 2 part jpouch surgery). Let me hear what the truth is from the trenches. Thanks guys! ML

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    Mark Reply:

    I was in the hospital till day 5, but they kept me an extra day b/c I lived 2 hours away and they kept an extra day to be careful. I haven’t known anyone to go home on day 2 but he may have differing standards of when to send you home. By day 3 you will be feeling pretty good. Now, you know the main advice right, WALK, WALK, WALK to help speed up your recovery. Try your best to get out bed and walk. I could only sit on the side of the side of the bed the first night but that next morning I was able to walk (I think the first day was more drug fatigue than actual pain).

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    ML Reply:

    Well, let’s just say that final hours prior to my surgery were spent like many a nights when my colitis was active. In and out of the bathroom. Seems fitting on this early morning of the day I have it all removed. Have a blessed day everyone! ML

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  88. avatar

    Colin says:

    November 21st, 2009 at 11:47 am

    Just had my surgery on Wednesday morning. I’ve been recovering at the Cleveland Clinic eve since. I feel fairly good – my bowels quickly woke up and I’ve been filling the bag quite often. One big thing was I took everyone’s advice and I’ve been walking like a man posessed. I’m hopeful I can get out of here by Monday, but who knows. If there’s any big bummer, it’s that I look horrible and there are a lot of young, cute nurses on my floor.

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    Brevin Reply:

    You should totally take pictures of your “journey” (by “journey” I mean the nurses)

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    Scott Reply:

    i know what u mean brother. there is nothing like having a bunch of hot nurses seeing your junk and not having them do anything with it. hahahahaha

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    Megan Reply:

    Colin, Sounds like you are doing really well, Congrats. Yes, keep up that walkign and who knows maybe on one of those walks a cute nurse will ask to walk with you. The best part of this is that although you’ve had major surgery you are feeling good enough to notice the nurses.

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  89. avatar

    Colin says:

    November 23rd, 2009 at 7:55 pm

    Hey, umm…I have a question. I just got out today (6 days) and I’m still adjusting to this bag and pants/undies. I’m a boxers guy and I’m trying to figure out how to wear the bag with pants. Thankfully, I bought some Adidas pants and sweats before I went in, so I have those to use, but how do you guys deal with the bag and real pants like jeans or khakis? I already hate looking at this stupid thing, so I’m like to avoid making others do the same. Any tips?

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    Eric Reply:

    This is a tough one: it’s different for everybody (and every body). I did a few things to ease in to the pants, mainly because my stoma was right at the waist line or so it seemed. I wore overalls (you can wear a shirt on top of them so it looks like jeans) and that relieved some of the pressure. I cut out a spot of a pair of khakis near the stoma, and I also remember trying suspenders. I couldn’t do what others will recommend – the phoenix belt or taping the bag in a certain position – because I had leak issues. My bag always had to go straigh up & down. Hope this helps! Hang in there, it gets better… much better.

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  90. avatar

    Colin says:

    November 24th, 2009 at 9:49 am

    Thanks for the reply, Eric! I’ll definitely take that advice in as I try to figure things out. I might look into that Phoenix Belt as well.

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  91. avatar

    Lisa says:

    November 26th, 2009 at 7:40 pm

    I will be having my first surgery on Monday, November 30th. If anyone has any thoughts on the surgery or post surgery that they think would be helpful, I would love to hear.

    My story from the beginning of my last flare up to my decision for surgery can be found here http://0016charades.blogspot.com/

    Thanks!

    PS I’m so glad someone pointed me to this site. It’s been very helpful and a great way to network with others who have gone/are going through the same thing.

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    Megan Reply:

    Hi Lisa, Wow – Monday is the big day. You must anxious, scared, excited, ready, not ready all at the same time?! Mark was so excited before his surgery b/c he was ready to no longer be sick! Advice for you – there is so much to give but the best advice I have/we have is to STAY POSITIVE. Although this isn’t how you probably saw your life going, this is an excellent option for regaining your health and your normal life. You should read Brevin’s post from his decision to have surgery through his 6 months after surgery – Brevin shows how important a positive attitude is in all this weirdness and stress and he shows true survivorship. Meets everything with reality, honesty and humor. http://www.jpouch.net/author/brevin/page/2/
    Please know we are here for you with any questions or anything you might have. And you might also find the forum over at http://www.jpouch.org an excellent place to get info and support too. We’d love to share your blog on our homepage, please let us know if that is okay?

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    Lisa Reply:

    Thanks for your reply Megan. I am definitely anxious, scared, excited and NOT ready, all of those things, but I know that I need to stay positive and take things one step at a time. I am very thankful to hear everyone’s stories on here and how strong and positive they have been through their surgeries and complications. It’s helped me and I know they will help others in our situation.

    Please feel free to share my blog on the homepage.

    Cheers,
    Lisa

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    Megan Reply:

    Lisa,

    Would you by any chance have a photo to share? We’ve found to generate more people to your story it REALLY helps to have some photos to personalize the voice behind the writings. But I understand if you aren’t comfy sharing photos yet. If you are, send them to our email at mdhilton@gmail.com and we’ll post them with a link to your blog.

    And of course, I forgot to mention the #1 piece of advice after surgery you must WALK, WALK, WALK. As soon as you can stumble out of that hospital bed you get up and get walking, that will help your body get back to functioning normal after that surgery trauma.
    Megan

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    ML Reply:

    good luck Lisa! I hope it all went well. Just had my first of two surgeries on November 17th. I under the being scared and not ready. You may have it even after the surgery as reality hits. But I keep thinking to myself when things get rough that I could have done nothing and developed cancer w/in the year and not known it. I could have already had cancer had I not gone in for the colonoscopy sooner. I am thankful for the surgery that we have today. I am grateful I did the surgery even at the toughest of hours. ML

  92. avatar

    Thomas says:

    November 27th, 2009 at 11:42 am

    Hi,
    I posted on this site once before, last year. Just wanted to give an update. I have colorectal cancer. I Had UC for 20 years and had learned to control it as of the last 9 years. Then in Oct. 2008 I was diagnosed with Colorectal Cancer and in Dec. 2008 I had a total colectomy and got an ileostomy. The better part of this year I have been going through treatment, both chemotherapy and radiation. My pelvis was radiated last Aug-Sept. I have completed both treatments. My outcome was good. I am in remission now. I am up for Surgery coming up in mid January next year. My surgeon suggests that I remove my rectum, but did NOT rule out putting me back together and doing a J-Pouch. He said it wouldn’t be crazy idea. I’ve had my ileostomy for close to a year now, December 8th will be my one year anniversary. I am wondering if there are people here going through something similar and If they have had a long stretch with there ileostomy before J-Pouch surgery. Should I start Kegel Exercises now? Any advice would be greatly appreciated :-)

    Thanks,
    Thomas

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    Megan Reply:

    Hi Thomas, Glad to hear you are doing well from your surgeries and that CONGRATS that you kicked cancer’s butt :) With Mark they removed most of his rectum except for a small rectal cuff to connect to. But I know with cancer patients they often remove all the rectum and cuff to completely rid you of that cancer. In fact, Mark’s surgeon The Brilliant Dr. Garcia-Aguilar specialized in complex colorectal surgeries with issues around the rectum. I’m not giving you any helpful info, and I apologize, just sharing what I know. BUT yes, start your Kegel’s now!!! You should always do your Kegel’s especially if there is some talk of a jpouch. You want to make sure that you keep those muscles working just in case you need them. Although, you are probably still passing mucous through your anus right? Or is your anus closed shut? Because if you are passing mucous through your anus and holding that mucous in before you go to the bathroom then technically you are doing kegel like excercises. Also Thomas, you may find ML’s blog helpful, she had pre-cancer cells and just had her colon removed – http://road2singledigitjeans.blogspot.com/

    Take care,
    Megan

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    Thomas Reply:

    Hi Megan,
    Yes I am still passing mucus from my anus. I am still open down in the anal region. I forgot to mention that I had a Transanal/Kraske Local Excision were my tumor was in my rectum. I had that surgery on Nov. 2nd and spent 2 days in the hospital. The surgeon basically cut the piece out and stitched me from the inside. I originally passed blood right after surgery put as time passed and healing progressed I got better. But right now, I still have a little mucus that passes my anus. It’s a little difficult because, yes, the surgeon open my rectum up like a flower and cut out the bad part in me and
    stitched me back from the inside. I have control i can hold it, but sometimes when i get up suddenly i can feel it and forget about the muscles. it’s not that bad, a little gets on my underwear. My dad says i’m still healing from it. Tomorrow will be one month after that surgery. I have been practicing the kegels after I read your reply. I have an onogoloist follow-up tomorrow. I still don’t know what would be better…I want the take-down, but my surgeon.

    So Mark has a little bit of his rectum left? Ok, so the cuff you mentioned is some of his rectum plus the sphincter muscles? Btw, I am 36 years old.

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    Thomas Reply:

    …sorry wanted to say that yes I want the take-down surgery but on the other hand taking the rectum out of me will give me a better survival rate? I’ve been humble throughout this healing process. I’ve grown accustom to what is safe and what is not…it’s tough sometimes. I’ve read so many books on how you can survive cancer by simply changing your lifestyle and diet, which I have been doing. i guess one has to find there own medium when deciding things like this. I have also checked out ML’s blog, very brave girl there.

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    Mark Reply:

    Thomas, That is great they caught your cancer since you are so young and have much life to live. Yes, Mark does have a small rectal cuff without the lining. I can’t remember what that procedure is called where they remove the lining (where the Ulcerative Colitis is active) and that allows UC patients to keep enough rectal cuff for jpouch connection without the fear of that rectal cuff getting UC sick. But with colon cancer like your case they have to take whatever is cancer affected which sometimes can leave you without the clean little rectal cuff needed for the jpouch. Although, there are plenty of colon cancer people who can have the jpouch so hopefully your surgeon can really guide you with good advice on what is realistic for what you have left. That is good you are doing kegels, those might help too with the little bit of leaking you sometimes have. I remember Mark’s surgeon saying it was so important he did his kegels b/c his body would forget to instinctively use the sphincter muscles. We hear pretty often on this site jpouchers or ileo’s that have a little leaking and for some people that improves with time and decreases. Keep us posted! Megan

    Under “Our Stories” you can read Rob’s story. He had a jpouch after colon cancer jpouch surgery. He eventually had his jpouch removed b/c his cancer flared again and took more of his rectum. I can send you his email if you’d like to talk with him.

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    Thomas Reply:

    Yes, that would be great. please send his e-mail address. The thing is before the surgery at the beginning of November I had full sphincter control, then the doc openned me up like a flower to excise that part that was bad. I will heal, i know it :-)

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    Megan Reply:

    Sorry about writing that post out of Mark’s account, I was using his laptop when I responding and didn’t change to my account Rob’s Email – Robbyitalguy@aol.com

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  93. avatar

    Jackie says:

    November 30th, 2009 at 7:29 pm

    Hi Everyone, I have sort of a different story. I was diagnosed with UC in May of this year and have been in a flare ever since. I’ve been hospitalized 4 times since then. I can’t take Asacol because it gave me a pericarditis which then resulted in surgery to drain fluid from my heart. I was put on 6MP but it isn’t exactly working and I also have Multiple Sclerosis so I cant take any of the biologics….so that leaves me with hoping the 6MP works…or surgery.

    Here is where you guys come in! My day to day isn’t horrible. Its not great but its not that bad, I still lead a fairly normal life, but this could also be due to the fact that I’ve been on steroids since june. I’m going to start weaning this week. I just went to an app. at cleveland clinic today to meet with a specialist about my options and he pretty much told me to really consider surgery. I have read every story on this site and googled everything that can be done but I just have some questions for those who are living it. Is this surgery worth going through if my day to day isn’t that bad? If my life isn’t horrible, is this surgery a good option? I mean I know that there is no going back once you choose to do this. I worry about the months of the stoma, but more so I worry about the leakage. Is this a common problem?

    Are the risks worth it? And also, I know this is a weird question, but after the take down surgery and everything is working, what are the feelings like when you have to go? Like do the urges feel the same? Or is the sensation and evacuation a totally different sensation?

    Any and all advice…thanks to all!

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    Eric Reply:

    I can’t tell you whether or not to have surgery, Jackie, but I can answer the question about “going” after surgery. I don’t know about you, but when I was having a flare, there was no option, when I had to go, I HAD TO GO! Now, post surgery, with the Jpouch I don’t have to run to a toilet immediately: I can wait until the end of the meeting, I can wait until the next rest stop on the highway, I can wait until the next commercial. These weren’t options with Ulcerative Colitis for me. They are options now. I just got back from skiing today at Breckenridge here in Colorado, and I skied from 9:30-3 without even thinking about using the toilet. Again, not something I could do pre-surgery. If you want to ask me some other questions or go “off the record” I’d be happy to answer more questions. Making the decision is a tough one, and not one to take lightly. It’s good that you are reading as much as you can. All the best

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    Megan Reply:

    Hi Jackie,

    The best thing you can do is to educate, educate, educate yourself to make the right decision for yourself at the right time. There are 2 EXCELLENT webcast available that you should definitely listen to. Below are the links with previous posts explaining what the webcast covers. What is crucial for you to understand is the role of steroids in your remission. Because if you can use steroids to put yourself into long term remission that is great, but if you become steroid dependent (meaning the only time you feel somewhat okay is when on steroids then you are dependent), that is when most people consider surgery after all meds have failed and they are steroid dependent and still rather sick.

    About UC medicines vs. surgery:
    http://www.jpouch.net/2009/01/04/webcast-which-meds-or-surgery-can-help/

    How to make the surgery decision:
    http://www.jpouch.net/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    It took Mark 7 years to decide and he lived with a pretty constant flare for 6 of those 7 years. But he needed time to make sure he had exhausted all his options prior to deciding on surgery. Mark was so sick and UC dominated so much of his life that yes, any risk of possible complications have been worth it for him see his 2 year update after surgery here: http://www.jpouch.net/2009/10/24/2-yr-j-pouch-anniversary-life-update/

    You may also find the UC support board over at http://www.healingwell.com a great place for you right now. Because there people are still living with UC, whereas, here and http://www.jpouch.org the decision to have surgery is made or close to being made. We welcome you here (of course), but also want you to embrace all your options.

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    Megan Reply:

    Jackie, also see Rachel’s post to you right below this.

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  94. avatar

    Rachel says:

    December 1st, 2009 at 5:26 pm

    Jackie,
    I’m going in for my surgery tomorrow morning, and let me tell you, this isn’t a decision that I ever thought i would have to make. It’s not necessarily something you think will happen. Definitely not an easy decision. But – from everything I’ve read and the numerous people I’ve talked to, everyone says that this is not a decision that you will regret.

    I’m not that person who was going 30x a day. But I’ve been on every medication under the sun, and the only one that was keeping me from breaking through was prednisone. As you may know, it’s not exactly the most friendly/fun drug ever. I found it to be almost worse than the disease itself. After 3 1/2 years of off-and-on prednisone, I’ve had enough. I came to the Mayo Clinic, and they recommended surgery for me. So here I am, a month later, rolling in for surgery at the Mayo tomorrow.

    I’m not going to lie – I’m scared and nervous, but I know that I’m having the opportunity to get my life back is huge. It’s not an easy way to get it back, but the reality is that this disease was stealing my joy, and I just don’t want to live like this anymore.

    Good luck in your decision making!

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    Mark Reply:

    Good luck with your surgery Rachel! And like we always say, get out of bed as soon as you can and walk, walk, walk. That will help get your body flowing again and get you home sooner! Keep us posted and let us know how your surgery and recovery goes. Heal well and quickly – Mark

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    Rachel Reply:

    Thanks, Mark! I appreciate it. I’m SO nervous.

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    ML Reply:

    Best of wishes for your surgery Rachel. I just had surgery on the 17th of November. The walking is key. Mine was delayed due to fever but once I got going it made it better. ML

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    Jackie Reply:

    Rachel,
    I’ve been on a few meds now so far too and like I said there are bunch more that I cannot take. So surgery is one of my only options left. The more and more I think about it, the more I’m thinking it may be the best bet. How nice to be CURED! How nice to not have to worry about all of this anymore. Like I said I have it ok right now, I’m not going too many times a day, but I am on lots of steroids and I’m SO Over them. I’d like to be updated on your surgery! Keep us posted.

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  95. avatar

    Lisa says:

    December 1st, 2009 at 5:54 pm

    Rachel,

    I had my surgery on Monday and today I feel absolutely great. I feel better than I have in a very long time.

    Good luck with your surgery. I’m sure afterwards you’ll feel tremendous too!

    Lisa
    lil.lisa.lu@gmail.com

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  96. avatar

    ML says:

    December 1st, 2009 at 6:28 pm

    back. not really feeling like blogging or jpling about it. But when I do I will. I got released on friday and think the detox of all the drugs over the weekend was overwhelming. thanks for all the people that sent well wishes and prayers.

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    Megan Reply:

    Hi ML, great to hear from you. Heal well and remember to WALK, WALK, WALK.

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  97. avatar

    Crystal K says:

    December 1st, 2009 at 9:46 pm

    Hi Everyone,
    This has been a great site with really useful information. I am having surgery in 9 days hoping to do basically a one step J-pouch. I have had an ileostomy for almost 10 years due to complications with Hirschsprungs Disease. I know it is rare for a HD patient to have a J pouch done, however I am wondering if there is anyone out there that has had this done after having an ileostomy for so long? I live in Colorado and scheduled for surgery December 10th. I am hoping to be home in time for Christmas, especially because my hubby and I have two young boys!! The other question I have is how long typically does the leakages last and is it a longer period of time if you have had an ileostomy longer?
    Thanks for all your help and it is great to read how many are doing so well after recent surgeries!!

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    Eric Reply:

    Hey Crystal, I had my surgery done in Denver, where are you having it and who is your surgeon? I don’t know about a one-step surgery, but for my takedown (part 3 of 3 surgeries) I had it done on Tuesday and was having a small dinner party on Saturday. It felt amazing, especially because all my other recoveries took 10x longer than that. Give me a shout if you’re near Denver: eric at eamills dot com

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    Crystal K Reply:

    I sent you a private email as well Eric but I am having surgery at Lutheran Hospital in Lakewood.

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  98. avatar

    Colin says:

    December 3rd, 2009 at 4:38 pm

    Guys, I have a weird question. When all is said and done, am I able to eat fast food? I’m a very healthy person and I lifted weights daily before my first
    surgery, but I have a love of Taco Bell I can’t hide. Are things like Bell, Subway or McDonalds okay after my takedown?

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    ML Reply:

    Funny how you just posted this. I was just having a conversation w/my mom about how my ff days were behind me except for the occassional, dont have another choice source of meal rule. I dont have answer for you. I do know that when my UC was active FF did me in…just couldnt stomach the grease. But three years of remission put the McDonalds meals away more than I should have. I hope I dont have to say goodbye to the occassional cheeseburger but I know I could live better w/o it.
    ML

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    Eric Reply:

    Hey Colin, I can eat Taco Bell and even wash it down with a beer or 2. Hope this makes you feel a little better about the situation. You’ll find everyone has their foods they steer clear of – I think Brevin’s is soup. Mine is popcorn, popcorn does me in. But Taco Bell, Pizza, Burgers. I don’t go to fast food places like McD’s or Burger King, but I love a burger at a pub after a long day of skiing. Hang in there!

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    Erin Reply:

    I’m about 3 months past my takedown and have tried quite a few fast food places. Nothing has caused me any problems. The main big change for me has been backing off on the spicy foods. Other than that I eat whatever sounds good. If something isn’t agreeing, I eat pastas or potatoes.

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  99. avatar

    ML says:

    December 3rd, 2009 at 5:11 pm

    Any one deal with this after step one surgery of two. Where your organs seems to be floating and come up under your ribs. The only way I can explain it is it feels similar to me as when pregnant and a baby would knee or elbow your ribs. Strange sensation and often painful. I am trying to find a way to sleep as I feel this a lot if lying propped on my side for too long. Also if I get kinda worked up or just after a longer than normal.

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    Jason Haas Reply:

    ML: After my first step of two, I couldn’t be on my side at all for the first 4-6 weeks. It felt like they were being tugged or smashed on one side (sorry, a male, so I can’t compare to pregnancy!) I found sleeping on my back, but propped up didn’t pull on my incisions but let my intestines rest. I was a belly sleeper, so this really screwed me up too. I had a wedge at home to help keep me propped up. Hope that’s all you’re dealing with and good luck!

    – J;

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    ML Reply:

    It’s getting a little more more comfortable on my sides. but sitting is uncomfortable too for too long. It feels like the small of my back is being stretched in all sorts of places. But the organs getting up under my ribs just freaks me out. I feel like a tossed salad.

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  100. avatar

    ML says:

    December 6th, 2009 at 7:23 pm

    wondering if y’all had more leak issues after your belly’s shrunk down post surgery. I havent had an issue yet but my home nurse is changing my seal style from the moldable to a precut.
    Just curious if change in style of seals and pouches are normal.
    ML

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    J Haas Reply:

    ML: My stoma shrunk at least a 1/4″ (if not more) within the first month or so. It also changed shape: Moving from an oval to more of a round shape. Also, I started getting more rolls as the swelling in my belly had shrunk. I had to change 3 times before getting it to sit well. I finally settled in using Eakins seals with 2 piece New Image drainable cut-to-fit convex wafer. I had my temp for 7 months, and it wasn’t until the last few months that I could have moved to a pre-cut. I did not, as the cut to fit have a larger convex section compared to the precut. I needed the convex-ness due to the little stoma I had plus the rolls. I’d hate to go against your home nurse, but beware the precut if your still changing: At least the moldable/cut-to-fit you can work with.

    I can say it’s frustrating if you do get leaks, but if you have a good ostomy nurse, don’t be afraid to use them: They specialize in this and know their goods. I know my home nurse wasn’t specialized in ostomy care, so she was unsure about what to do next in the case of leaks. My ostomy nurse hooked me up everytime and finally got me settled to where I didn’t have a leak for the last 5 months of my temp ileo.

    – J;

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    ML Reply:

    Thanks for the heads up. My home nurse is with an ostomy and wound home agency and has been dealing with ostomy’s since the 80’s. I feel comfortable with her telling me ahead of time that we needed to switch. There was no mention in the hospital that anything would change. The nurse there that dealt with my ileostomy just said that most people liked the moldable and that it’s what the hospital used. I do know that mine has a tendancy to curve down so I have to make sure the mold is done right so that it fits correctly. It’s so unnerving thinking and worrying that a leak my happen. I am scared to apply it the first time myself. I would rather they just come and do it twice a week for 9 more weeks. Ugh the pressure.

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    J Haas Reply:

    ML: That’s great news: Having a visting ostomy nurse is a gift! If he/she recommends, then I’d go with their advice. They’ve seen way more than either of us have or will :^) I had my temp for 7 months and got used to it quickly. My father had one a few years back, so I got a glimpse of what to expect (the good and the bad.)
    Don’t do too much worrying about leaks. “Things” happen, but you’ll spend more time worrying about stuff that is unlikely to happen. And for each thing that does happen, you’ll learn how to deal with it for the next time. Laughter for me was always the best medicine. Especially when I tried to change it in the evening, and it wouldn’t cooperate. My wife used to call those “crime scene cleanups.” :^)

  101. avatar

    ML says:

    December 7th, 2009 at 8:03 pm

    Two things. One. At what week after step one surgery were y’all able to drive. I will be three weeks post surgery tomorrow and am going a bit stir crazy. I am down to one pain pill a day and it is usually at night. Two. What can I expect from my first post operative visit. I have mine on Thursday. Thanks.

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    Colin Reply:

    I had my surgery (1st of 3 surgeries) on November 18th and I drove for the first time today. I had to have someone with me (well, I didn’t *want* to, but I’m staying with my folks and my mom refused to let me leave without her), but it was alright. I might have been able to go a little earlier, but I’ve been back twice for blockages since my first surgery, so I’ve spent about an extra week in the hospital.

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  102. avatar

    J Haas says:

    December 8th, 2009 at 7:56 am

    My doctor cleared me around week 6, although I had a few weeks setback due to fluid in my abdomen. I don’t think I drove for another 2-3 weeks, as I had lost so much weight and still had pain when sitting: I wasn’t comfortable that I could react to any sudden issue, should it arise. [I lost so much muscle, that I would be sore after driving, as if I had just worked out!] I wasn’t on pain pills after the first surgery, just antibiotics, but I know after step 2, they said no driving while I was taking them (sorta makes sense there!)

    My first post-op visit (as with most of them) had a hand check of the pouch: With the staples still in there, it was a little uncomfortable (I won’t lie there). I don’t think it was until month 3 that they did a scope to check the whole pouch prior to my gastrogaffin.

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  103. avatar

    Jackie says:

    December 8th, 2009 at 9:43 am

    Hey Guys, Still debating this whole surgery thing. A few questions for those of you who are completed with all stages.

    Do you guys still have any of the symptoms that you had during your UC? Cramping, or abdomen pain? Straining? Not feeling finished?

    The more I think about this, the more I think that I may want the surgery just because of all the BS that comes along with having UC. My day to day isn’t that bad, maybe 1 -2 BMs, but I get some pain, crazy gurggles, and over all just feeling of not being well. I just feel like I haven’t been well since my diagnosis. I guess my main worry is that after surgery, I’ll still feel some of the same stuff that I feel now, even though i’ll be “cured”.

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    Mark Reply:

    Hi Jackie,

    Good questions to be asking. No, I have ZERO symptoms like UC. I am completely cured of UC and its evil symptoms. No cramping, no pain, and the feeling finished is different now. At first with my jpouch I didn’t always feel finished but then I learned how to empty the jpouch to make myself feel finished. That didn’t take very long to work out either. Now my day to day with UC was bad with 10+ BMs a day, urgency, frequent accidents, bleeding, pain, etc……So the temp ileo and then jpouch have been a huge difference for me and cured me for my situation with UC. Also, it took me 3 years to make the surgery decision, but when I did make the decision I was SO ready to be better and it was no longer a difficult decision to make. Once I knew UC was dominating and ruining my life then it was easy for me to make the decision. Although those 3 years pondering surgery were not that easy, so keep asking questions and living with making this decision until you are comfortable with your decision.
    Here is Brevin going through his decision process – http://www.jpouch.net/2009/01/18/1195/ Also, if you click on his name you can see all his posts from decision making to after surgery.

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    ML Reply:

    Hi jackie,
    I just had the step one of two step surgery on November 17th. I went into this surgery not because my UC was active. I had been in remission for about three years. Living life like I had not been sick. I entered this surgery because of High grade dysplasia. My UC had transformed my colon and there was a great great chance that I would develop cancer. Infact the growth of my dysplasia worried my doctors because it had gone from none to High grade in three years. That is not common. What is common is that the longer you have UC the greater the odds of getting colon cancer is. I was sitting at 10+ years of having colitis, including the years I was in remission because although I didnt have active disease it never really goes away it just nibbles away at you with out enough to cause a flare. I went for a second opinion and it was confirmed. So as much as I didnt want to have the surgery the idea of having/getting cancer pushed me over the edge. Of course I cant make the decission for you but I must stress that you have to weigh all the options and then make your choice. But back to your question. I didnt expect to feel like I had to go to the bathroom with the ileostomy but you still do. it is 100% normal though because your j pouch is hooked up down there and the organ is alive and working. I pass some fluid but it is not much and not everytime. I can hold it and it comes out much like when I had to go over the last few years…meaning no urgency and no pain. It is not solid but I never had solid solid for years and years. the only pain I have is the last of the pain from the surgery. My adominal area hurts but it is still a bit swollen and is adjusting to the changes inside. I am nine weeks to the second surgery and am counting down the days to be cured of UC and resume my life w/o the risk of colon cancer or a flare ever again!!! Good luck with your choice.

    [Reply]

  104. avatar

    Crystal K says:

    December 8th, 2009 at 10:23 am

    I am getting very excited for my surgery in a couple of days. I just had my last consultation yesterday with my second surgeon, in addition to the J-pouch I am having several other things done at the same time. It was so nice to tell my supplier of ileostomy bags the other day that not only do I not need supplies now I am hoping to never need them again!! How refreshing after 10 years!! I am in Lakewood CO and am having surgery on December 10, this Thursday!! HOORAY!! What have you all found most effective for the butt burn that comes with the multiple bowel movements per day? My Dr. gave me a list but I am wondering what has worked best for all of you?

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    ML Reply:

    good luck with your take down! keep us posted! Do you have a blog about your journey? I have found it is an excellent way to vent my anxiety and share my journey. If you click on my name it goes there. Best wishes. ML

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  105. avatar

    Colin says:

    December 8th, 2009 at 8:06 pm

    So, I got some amazingly horrible news today. My surgeon’s nurse told me that I’m going to have to have my temp ileo for at least six months. I have to have three surgeries and apparently, because they only removed my colon in this first step, it’s going to be six months (I was told this whole time it would be three months) before they can create the J-Pouch. From there, I have to either wait another three months for a takedown or there’s a small chance he might create the pouch *and* do the takedown at the same time. Either way, this is a pretty crushing blow because I’m 24, single and just lost a ton of muscle mass (I was a pretty heavy bodybuilder in a past life) in a pretty short period. Hearing I have to have this bag for another 3 months is, I’m not going to lie…Pretty depressing.

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    Colin Reply:

    I’m sorry I’m venting, guys. I haven’t had this bag very long (Nov. 18), but I already hate every possible thing in the world you can hate about something. I feel like it’s made me less than a human and being suddenly told I need to live another three months with it is tough. I just really feel like my entire life’s on pause at what should be the best part of my life.

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    Mark Reply:

    Hey Colin, Sorry to hear about your time delay. It is hard to have an expectation busted, it is like being sick all over again – one medicine failure after another, then surgery, then delays. It is very okay you are feeling frustrated but when you can be sure to put it into perspective that the surgery journey is NOT an easy one, but it is leading to a much much better life. Allow yourself time to be disappointed by this delay but you have to trust that your body much have been really sick if they need that much time delay between surgeries. Also, you will definitely be able to maintain a healthy body mass, maybe not to the level before until your all done with surgery/recovery but I was very physically active with my bag as I’m in construction and was back to work around 10 weeks. Please feel free to vent, but whenever you want to vent, always remember the reason you are doing this – to be healthy and normal! I’m 2 years with a jpouch and my life is excellent quality now!

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    Colin Reply:

    Thanks for the kind words, Mark. I guess I’m as confused as anything because, while I had UC, I was extremely fortunate to not have any pre-cancerous signs or some of the other indicators other people with J-Pouches experienced. As a result, I didn’t feel *that* bad, physically. To see people have the two-step surgery and only deal with the bag for a couple months at most makes me a bit jealous, I guess.

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    J Haas Reply:

    Colin,

    Don’t be jealous of the people who have had the bag less than you: It’s very possible they have had it much worse in every other sense. I put off my final takedown an additional 3 months (7 months total) and kept my temp ileo because I was able to do so much more: I was gaining weight, back rock climbing, and back golfing (and lowering my scores.) I refused to allow the surgeries break up my “summer” fun.

    Don’t allow your expectations to get in your way of a healthy attitude: Things won’t always go as expected, but by standing tall, you can not only make personal progress (mentally and physically), but you can be a pillar of strength for those around you and those suffering from something similar.

    Knowing you did bodybuilding before, you know it takes work to get results (unless you were the freakishly strong guy who just put on muscle by thinking about it!) This is no different, just a different path, with a different result, but the mentality is still the same. Try, and you will succeed.

    I’m currently dealing with some unknown issues after my takedown and feel even worse now than I did at any point after the first surgery. Plus, going to the bathroom 14 times a day is significantly more than when I had my temp ileo and is controlling my life. Having the bag was much easier than this recovery.

    Good luck with your recovery and the upcoming surgeries: Don’t focus on the negatives, it will only make the recovery more difficult. Take it by the reigns and live on. “It takes a little more persistence to get up and go the distance.”

    – J;

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    Kanaka Reply:

    Colin,
    I agree with J Haas. I had bag only for 8 weeks, but had so many complications after my surgery, that it was tough. My intestines were blocked, my stoma would stop working, I would be in excruciating pain. and then after few weeks, realised that my stoma was not build correctly and hence there was leakage, skin damaging and burning and etc etc…
    All that worked for me was faith that there was something good in what GOD does./whatever happens, happens for the best.
    GL..It is tough journey, but the end is sweet.

  106. avatar

    Kim says:

    December 9th, 2009 at 12:40 pm

    Hi everyone! I have been reading all the stories on here and this really is a wonderful site! I was just diagnosed with severe chronic Ulcerative Colitis at the end of September after bloody diarrhea for about two weeks beforehand and being admitted to the hospital. I am now scheduled for surgery to remove my colon and eventually the J-pouch on December 14th. I have to admit it is very frightening, especially since this has all happened so suddenly. Any helpful hints to prepare myself? What wil life be like immediately after?

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    Eric Reply:

    Hi Kim, I’m sorry to hear about your situation. Since you’ll be in the hospital, I suggest you search around this site for hospital related posts. You can use the search box at the top of each page. Here is a good list of “feel good” movies http://www.jpouch.net/2009/01/12/movies-that-make-you-smile/ I also suggest getting something like sugar-free jolly ranchers, bringing a notebook. Bring a pillow, and anything else that will comfort you.

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    Mark Reply:

    Hi Kim, hang in there with this process, it is indeed happening quickly for you, but the faster you have surgery the faster you can get back to a healthy and normal life. UC is not a fun disease at all so less time living with UC is good for you. After step 1 of 2 surgeries I had about 2 weeks of real down time where I was actively recovering from the surgery – you can read about it here, http://www.jpouch.net/photos/surgery-1/ . But I felt great pretty fast and was back to life in a few weeks. Then my jpouch surgery or takedown surgery (as we call it) was really easy, fast recovery and felt great afterward.

    Be sure to read all our surgery blogs to see what we needed in the hospital for each step surgery. Definitely bring a light weight robe for your first surgery so you can walk around with the robe draped on your shoulders. And the key to a fast recovery is to get out of bed and WALK, WALK, WALK, as soon as you can to get your body up and running to speed that recovery.

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    Kim Reply:

    Thank you….I have also noticed and am wondering if anyone has had this…..a rash that has appeared on my legs just in the last week? Is that a symptom of UC? What foods will I be able to wait after the first surgery? I am soooo hungry for Mexican or maybe a Margarita? Wishful thinking, I know!

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    Mark Reply:

    There are different skin rashes, tongue issues that go with UC so maybe that could be it. I had bad itching but not a rash, but that was pred. I think mainly. You’ll be able to eat and drink normally, it will take a few weeks after surgery for you to have a normal appetite but afterwards you’ll learn what foods work best for you. I eat healthy and unhealthy (including mexican) and I do fine. I also am fine to have a few drinks.

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    Kim Reply:

    Thanks. It is good to know there is life after UC. I probably had it longer than a few months, but just did not recognize the symptoms of urgency or just brushed off a reddish hue to having too many tomatoes or something. I can’t even imagine having UC as long as some of you! Just with the few months since my diagnosis and the cramps, being up every hour all night long, etc…I have definitely had enough of this diseased colon! I am wondering…..I have no history of this in my family, and from what I understand, at 39 I am out of the age range that is “typical” for getting this. How many of you have a history of this in in your family?

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    Mark Reply:

    My family has a long history of gastro related diseases. I’ve known 2 others over at jpouch.org whose children have shown up with UC. Some doctors will say it is genetic -others say there isn’t enough proof. The disease some seem to show up in teens and young adults, however, it can hit anyone at any age. It is more common to hit women after childbirth or people who quit smoking, those 2 things seems to bring it on in people susceptible to the disease.

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    Chris Reply:

    Hi Kim,

    My Dad had UC for ages, his stories of colonoscopies from the 1960’s are quite interesting and the way he tells them quite funny! LOL I was diagnosed in my 20’s and had the surgery at 30 (I’m now 47)and its been the best thing since! There is not only life after this surgery, but a better life!

    My older brother was diagnosed with colon cancer at 55. I do not think anyone else in our family has had any issues.

    So, yes we’ve had a history in our family, unfortunately for you, no history doesn’t mean no disease! Good luck with your surgery on Tuesday, I’ll raise a beer for you (yes, I drink beer, and a decent amount too…LOL!)

    Chris

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    J Haas Reply:

    Hi Kim,
    I was the first in my family to have UC, but both sides of my family have had history of IBD/IBS for 2+ generations. My father had the worst so far with ischemic colitis. My UC popped up in my late teens, ironically after I had ‘started’ smoking! (Those days are long gone: my teens AND my smoking.)
    Good luck on your surgery next week! Positive thoughts and actions bring positive results!
    -J;

  107. avatar

    Jackie Zimmerman says:

    December 10th, 2009 at 10:50 am

    Hey guys,
    Looking for anyone whos had their surgery done at Cleveland. Who was your surgeon? How do you feel about him/her would you recommend them? I have an app with Dr. Kalady and I think I may get one with Dr. Remzi. Anyone have thoughts about either?

    Thanks!

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    Colin Reply:

    Jackie, I just had my first surgery (of three) done by Dr. Remzi. He is, without a doubt, one of the absolute best in that field in the world…He told me so himself, lol. Seriously, though, my cousin is a gastro doctor who’s worked at the Mayo and Cleveland Clinic and she said he’s the absolute best. He’s the head of the colorectal surgery department there, so you’d be hard-pressed to find someone better than Dr. Remzi. FWIW, he’s also a pretty nice guy. Some doctors are pretty clinical and cold, but he’s always been very nice and friendly to me.

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    Jackie Zimmerman Reply:

    Colin can I pick your brain about him and cleveland? Shoot me an email jackiezimmerman [at] gmail dot com

    [Reply]

  108. avatar

    Alison says:

    December 10th, 2009 at 12:54 pm

    Hey everyone!
    So, i just went to sick kids forwhat was supposed to be my final surgery. But they couldn’t close my stoma because apparently the stapler malfunctioned when they did the second stage and the surgeons didn’t realize until now. So the jpouch and anus are two separate things right now. My question is, has anyone ever heard of this happening before? Because all the people we talked to at Sick Kids said that they have never heard of this happening before. Thanks :)

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    Mark Reply:

    No, I haven’t heard of this exact thing happening with error in the stapler. However, I would imagine this is the type of error surgeons don’t want people to find out about. I’m sorry this happened to you but it does sound like they’ll be able to fix it.

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  109. avatar

    ML says:

    December 11th, 2009 at 9:23 am

    just updated my blog with news…news I wasnt expecting. Hop on over to give it a read. You can click on my name to get there.
    Have a blessed day. ML

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    Kanaka Reply:

    ML:(((hugs)). I hope the cancer is gone and you will not need any further treatment, and your internal pouch will work.
    This is definitely big news, but I hope you get strength to have a good happy normal life.

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    ML Reply:

    Thanks Kanaka, I am trying to focus on the positive. I mean I was walking around with cancer and now I dont have it. I pray that my cuff is not affected. I really want to be a happy j poucher with no cancer! ML

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    Thomas Reply:

    Hi ML,
    I’ve posted here before. Megan told me about you. Long story short: I am a 36 yr old male. I’ve had Colitis for 20 years. Back in October 2008 i was diagnosed with Colorectal Cancer. And in Dec. 2008 I had a Total Colectomy and got a Ileostomy. This whole year (2009) I have undergone Chemo and Radiation treatment. This coming January I am up for surgery. I am facing a most difficult discussion of my life. The surgeon suggested the I remove my rectum, but he did NOT rule out J-Pouch surgery. And I really want the take down surgery! Can I ask you what stage you were in your Cancer?

    Btw, I’ve had my ileostomy for a year now. Dec. 8th was my one year anniversary.

    Any help would be most appreciated

    Thanks :-)
    Thomas

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    ML Reply:

    Hi Thomas.
    I actually had the step one of two surgery for the j pouch on November 17th. The internal pouch was created. I am grateful. Three weeks out it is healing normally or rather right on schedule. I have had UC for over 10 years. I had been in remission for the last three of them. You can find more at my blog. But basically I had the surgery due to high grade dysplasia presenting in the colon.I had no choice to have the colon and rectum removed. No surgeon would let me leave the rectum. However I found out that I actually HAD rectal cancer. From what I understand it was stage 1. It had not gone through the wall of the rectum or into the lymph nodes. Thank God. Now I have to go see an ocologist to make sure the cuff is cancer free.
    So for now I wait. Wait and see and pray all the while living with my ileostomy and trying to get use to life with it.
    I hope that

  110. avatar

    Rachel says:

    December 12th, 2009 at 4:03 pm

    Ok, well, I had my 1st of 2 surgeries up at Mayo on December 2nd. I’m 10 days out, and I can honestly say that I totally hate this stupid bag. I cannot wait to get rid of the darn thing. I feel icky, stinky, and cannot even fathom feeling remotely sexual at this point. I am totally counting the days until takedown and I wish I was the one having it taken down at 8 weeks instead of 12. ::sigh:: This whole surgery recovery thing is TOUGH. Tougher than I anticipated. I feel like I can’t get comfortable sleeping at night, and I’m just cranky all around. I know that 90%+ of people who have the surgeries are thrilled, but when am I going to feel that way?!? I wish I could talk to Future Me to hear how everything turns out b/c right now, I’m not feeling too sure about any of this. ::sigh::

    Thanks for listening to my vent. I’m thankful for this site.

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    ML Reply:

    Rachel, I just want to say…I hear ya sister! I am three weeks post surgery. Tuesday will mark one month and I am biting at the bit to get this over with. I did get some news that blew me away on thursday and I am hoping that it wont set back my take down in less than 9 weeks. Can you tell I am counting. I have to see an oncologist as they discovered cancer in my rectum. I am praying that my cuff is cancer free so my take down will go as planned. I feel so unattractive and gross all the time. I am sure it is a mindset game but you know what I just dont think I can get use to seeing that bag hang off of me. I dont want my husband to see me w/o clothes even though he bathed me in the hospital…I was on serious drugs…so I dont really remember. But I dont even want my children to see it. I have a two and three year old and I am sure mommy would appear like a monster to them with that thing attached. I know I shouldnt be so vain but damn it I lived with this terrible disease for so long that it stripped me of some pride long ago. That this, this is just a breaking point at this time in my life. My name connects to my blog if you want to read my story and if you want to contact me via email you can at mlguy@comcast.net
    By the way I didnt have the surgery due to active UC and the doctors told me I would probably have a harder time with it than a person that was really sick with their colitis…mentally that is because I was living disease free for 3 years and now I would in my mind be “sick.” well sick is right.
    ML

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    ML Reply:

    PS. I am still not comfortable sleeping and last night slept in the recliner. That was better than the bed. I have however been getting longer hours of sleep if I do end up in a comfortable position. Rare but it is happening.

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    Rachel Reply:

    ML, I’ve been sleeping in a recliner too. Somehow I have a hard time getting comfy in the bed.

    My UC was uncontrolled by anything other than prednisone. I had run through every single drug with the exception of Humira, and I just wanted to go ahead and get the surgery over with since it looked like I was heading that way anyway. At my sickest, I remember thinking, “Just take the whole stupid colon out already!” Now that it’s done, I’m trying to remember how sick I felt so I can remind myself that this IS really worth it.

    I have a 2 year old son, and that’s probably one of the harder parts about this. He is SO rambunctious, and thank goodness for my parents helping out or I don’t know how else I’d get through this. He’s just way too busy! I don’t really want him to see the bag either – or my husband, for that matter. I’m feeling intensely private about it all. :-\

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    ML Reply:

    The recliner has been a blessing. Glad you find it comfy too. I too have tried to recall when I was sick what I must have felt like. Being in remission for the last three years I have really forgotten what it is like to have active UC and feel terrible.
    It has been really hard dealing with the babies. I have a two and three year and it has been tough on them. I dont feel like the same mommy right now. Hopefully that will soon change. Thank goodness my mom has come (been here since Nov. 15.) and that her and my dad are so wonderful to give of their time together so that she can be here with us to help through the surgeries.
    Have a great day Rachel.
    ML

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    Megan Reply:

    Hi Rachel, I am Mark’s wife (the voice that documented his surgery, etc… http://www.jpouch.net/photos/surgery-1/ ). I made sure to accept his bag and the stoma “Stumpy”. It was really important as a family that we accept his stoma with him, that in turn made it easier for him to accept. In fact, one of the reasons we documented his surgery so clearly was so that our friends and family had to SEE his stoma and deal with the reality. But what happened with our sharing was people felt way more comfy to offer support. At his return home party, people felt like they could ask to see it, at one point he had 3 of our friends bending over watching his stoma in action. I know that sounds drastic, but for us to cope, we felt normalizing the abnormal situation was best. It worked out well for Mark – he was very happy with stoma, happy to be healthy. We regained our sex life with the stoma b/c he was healthy, I didn’t care about the stoma because he was HEALTHY and he felt good. I understand hesitating to show your 2 year old but your husband needs to be involved in all aspects. He needs to heal too, you may have been sick, but he was hurting watching you be sick. Let him heal with you by helping you cope with the stoma.

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    Kristine Reply:

    HI Rachel, I had step one done August 4th @ the Cleveland Clinic in FL. I am still trying to sike myself up to do step two! I found several products that help me feel better about the appearance of the new stoma & bag. I went over to http://www.ostomates.com, http://www.ostomycovers.com, and just googled ostomy products. I’d still consider myself pretty private about the emptying and changing parts but, he is okay with it…I am the one being reserved. Personally, the most embarrassing part is the smell. Not only when emptying it, but I think it always has an oder. I keep a personal cologne spritzer with me and a small air freshner, lol. There are good days and bad…my worst day was raw skin around my stoma and no skin powder to heal it, second worst day was when the power went out in a public restroom as I was emptying my bag! I have to laugh about it now. Ok, enuf blabbing. We r here, enuf of us have experiences to share and heop we can ease you into the “norm” of the situation. – Take Care

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  111. avatar

    Rachel says:

    December 13th, 2009 at 2:45 pm

    My husband is gearing up for his take down surgery coming up this Thursday at the Cleveland Clinic. Has anyone else here had their surgery in Cleveland? What should we expect with takedown?

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    Colin Reply:

    He didn’t have his first surgery at the Cleveland Clinic? I just had my first of three J-Pouch surgeries at the Clinic and it was a generally pleasant experience. The H wing (I think it’s 50/51 or 51/52), which is the colorectal floor, is the place to be. The rooms and halls are very clean and the nurses and staff are absolutely awesome. Some of the other places, however, are dicey. If you’re offered a choice, push to get on the actual colorectal floor…You’ll thank me for it later.

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    Rachel Reply:

    He actually had the first two steps done at the Clinic as well….I am just reading that with each different facility there seems to be some differences with hospital stay (at least they differ from what we were told). I couldn’t agree more about the H wing….much better than where they had him after the first procedure.

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  112. avatar

    Kristine says:

    December 13th, 2009 at 7:20 pm

    Hello all, After hearing much rave about it I purchsed a phoenix ostomy wrap. Yet, I haven’t used it yet. Maybe I am misguided but how do you attach your bag in a horizontal position and how the heck would you empty your bag comfortably like that. Anyone have experience to share? This Phoenix wrap was on back order so I know its in demand…should’ve came with some better “tips” for use. – Help

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    Mark Reply:

    Hi Kristin, I used the phoenix belt and liked it but after I got used to the bag I stopped with the belt and just hung out there b/c it was easier. Yeah, it was kind of a pain to empty at the side, but I wore a 2 piece unit so I could twist my bag from the horizontal to vertical to empty. Not a huge deal. Not sure how you would handle it if you wore a 1 piece that doesn’t twist, but with a temp ileo I bet you have a 2 piece anyway? Below are pictures of me using my phoenix belt.
    http://www.jpouch.net/photos/surgery-2-inbetween-surgeries/

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  113. avatar

    Kristine says:

    December 13th, 2009 at 7:36 pm

    Ladies this site doesn’t endorse products but I have to share – make your own opinion once you check this out http://www.myheartties.com/coverlet.php?
    I think if I get this (X-mas) I’d be feeling sexy once again!

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    Eric Reply:

    ok I know I’m not a lady, and this site actually DOES recommend useful products to people. This looks AMAZING! I hope someone could write a review of how this works for them for this site, that would be great.

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  114. avatar

    ML says:

    December 13th, 2009 at 9:40 pm

    Weird question but do you think using a heating pad on your back is harmful to the recovery of your j pouch? I know sounds silly but I know diabetics are told to stay away from heating pads. So my mind is wandering and wondering. I feel so good when I am in the car and the heated seats soothe me so just wanted to apply some heat at times when my back is hurting. For some reason I am having lots of pain in my lower back. I think it is because I cant sleep comfortably. ML

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    Emily Reply:

    Hi ML~ I used a heating pad on my back after both the first surgery and my takedown this summer; my back really hurt as well. I don’t think it hurt anything. I also used to take really long warm showers and have my hubby massage my lower back. I am so glad that step one is done for you and I pray that cancer is nowhere in sight. I too had high grade dysplasia, but they found that after my colon was taken out. I am now four months post takedown and doing really well except for some occasional night leakage~I guess that it is a small price to pay for finally feeling good after ten years, being cancer free and being able to be an active mommy to my three year old. Looking back over the past year, I honestly have no idea how I made it and I remember having all of these frustrations that everyone on the site talks about. But the strength of the human spirit is amazing!

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  115. avatar

    Jackie says:

    December 14th, 2009 at 7:25 pm

    So I’m still in the deciding phase, but I wanted to ask you all, regardless of the stage of surgery you’re in…is there anything that you’re disappointing with? Are there any regrets? After its all said and done are you 100% happy with your results? Thanks!

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    Colin Reply:

    For me, after one of three surgeries, the answer is…I guess. Without a colon, I don’t have UC and I don’t have the cramps, blood and exhaustion that comes along with it. On the other hand, I have a bag hanging off of me that collects my waste. I hate that bag. A lot. I just have to tell myself that it’s a temporary thing and that’s how I’m able to get through my days. I don’t want to say any of that to scare you, I just think it’s important to know that the “process” comes with its own set of sacrifices and life-changing moments.

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    ML Reply:

    I would agree with Colin. This journey takes on it’s own life and has it’s own set backs but also amazing changes. I am as of tomorrow one month post surgery for step one of two. I two hate this bag. I am counting down the days/weeks until my take down. Which I am sure will be a whole other adjustment based on what I have read. I can say now that I am very thankful that I had the surgery….I dreaded it and cursed having to have it. However, it may have saved my life. In fact I believe it was a god send. They found stage 1 cancer in my rectum and it was cancer that was classified as extreamly aggressive. I was in shock and spent most of the weekend in a piss pore mood but after seeing the oncologist today I am viewing things in a new light. A pet scan and blood work will tell us if all the cancer was taken out (I have a 1 cm cuff left of rectum in order to have j pouch.) The doctor did tell me that she feels almost 100% that there is no more cancer based on where it was located and that there were no unusual findings on the CAT scan that I had in the hospital due to an abecess of fluid
    So while the deciding phase is a tough one know that which ever way you go you have to be confident in your own personal choice…then you will find peace.
    ML

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    Mark Reply:

    And for me, I celebrated the bag and didn’t mind it all because it meant I wasn’t sick any longer. For me it was either sick with UC or temporary bag. I accepted the bag and didn’t fight it at all because it was the reality and though not my first choice, it was the best choice to being healthy.

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    Mark Reply:

    Jackie, For me this was 1000000% times the right decision and I have zero regrets other than not having the surgery sooner. UC dominated my life and was ruining my ability to function normally and I was sick emotionally and physically due to UC. I had the surgery and immediately felt NO UC symptoms and

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    Mark Reply:

    ….new many almost immediately. Here is my 2 year update and you can see it connects you to my 9 month update that talks about how I was doing at that time – http://www.jpouch.net/2009/10/24/2-yr-j-pouch-anniversary-life-update/. Jackie, did I send you the links to the great webcasts about how to make the surgery decision and what is the right decision for you.

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    J Haas Reply:

    Jackie,
    I think the most important thing to walk into this surgery with is to be prepared for anything. I was effectively in remission with my UC for over a decade and opted to take the surgery for fear of cancer (dysplasia in the colon). Everyone (including my doctors) expected me to do well since I was quite healthy coming in. I ended up having complications after the first step (missing work for 10 weeks) and losing 28 lbs. By the time I was ready for step two, I opted to wait a few months to enjoy being healthy, even with the bag. I had my takedown 6 weeks ago and have been struggling with chronic pouchitis since (again, something that we didn’t expect with my health.)
    I am not complaining, just stating my current results. I would do it over, but you’ve got to have the right mindset: There’s a possibility that this may not work out and I have to have a permanent ostomy. I came to terms with the bag very quickly and didn’t mind having it, as it was better than the alternative (death or cancer.) This has made the transition and living much easier and more full. Surround yourself with people that are understanding and supportive: My wife had no problems with anything we’ve been through which has been a Godsend.
    Don’t let yourself be judged and don’t be embarrassed of your situation. I found the more open I was with people (to the point they can handle), the easier and more comfortable both parties felt.
    Be positive, both in thoughts and actions. Good luck in your decision: It’s one of those permanent ones, so it’s good your taking your time.

    – J;

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  116. avatar

    ML says:

    December 14th, 2009 at 9:28 pm

    head over to my blog for some Praises!!!!

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    Colin Reply:

    Congrats, ML. That’s truly excellent news!

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    Lisa Reply:

    Good to hear the great news ML! Everything happens for a reason and it seems your surgery was a blessing in many disguises.

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  117. avatar

    Rachel says:

    December 15th, 2009 at 8:20 am

    How long was everyone hospitalized after the takedown surgery. We have been told as short as 2 days but I am a bit pessimistic about this.

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    Kanaka Reply:

    Rachel, I was in hospital for 5 days. day 1: surgery. Day 2: no bowel movements. Day 3: Bowel movements and butt burning. Day 4-5: getting used to new life style and removal of staples (as they had screwed my first surgery and they had cut me open to fix my intestines, which had not emptied fully for 8 weeks!).
    its really easy and u feel instantly nice after the surgery. Please make sure u take ur fiber, imodium and use desitin to avoid the butt being on fire! That is the only thing I am struggling with even now.
    I am writing my story, but here are some tips to ensure no butt burning after surgery:
    1. Shower your anus as much as possible.
    2. Initial few weeks, probiotics is recommended
    3. Benefiber worked well for me. less gas and easy digestion.
    4. 1-2 imodiums initially
    5. Fiber in food did not do anything to me, but am not sure
    6. Walk walk and walk.
    Good luck. Everything is going to be fine–just have the faith as thats the biggest thing IMO.
    Kanaka

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    Mark Reply:

    I was in for 4 days with takedown. I felt great right after surgery and could have gone home once my bowels woke up on the 2nd day, but my surgeon kept me an extra 2 days because I lived 2 hours away from his hospital and he wanted me close so he delayed my release. I’m really glad he was cautious even though I was ready to leave by day 3. He was very cautious with the series of food they gave, liquid, soft, soft, more substantial food. Here is the detailed account of my takedown recovery: http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/

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  118. avatar

    ML says:

    December 16th, 2009 at 12:04 pm

    Any one use a bella band to go over the appliance and the belly? I am thinking of getting one because either my jeans are too big….GOOD thing!!! or my skinny jeans, oh how I have longed to wear you again, kept you in my closet for that “when I can day”, pre baby, pre steriod weight gain jeans (fit into, can zip up, they look WONDERFUL!) I cant button because they wont go over the filter part of my lovely appliance. So just wanted to know who wore one of these things and if you liked it. Bella bands are typically worn during when pregnant to keep your jeans up when you cant button them any more. They come in cute colors and peek a boo like a tank would. They give you support. I lent all mine out to pregnant mommies months prior to surgery and cant ask for them back as they are still in use. Darn.

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    Kristine Reply:

    HI ML… I saw you post from my phone while at work today and let out a good chuckle. I wear that bella band everywhere! I have all the pretty colors :) I like it because it cinches the waist and keeps the noise down. I was originally wearing a tank that did the same cinching but it also made me look flat chested! :) So this is SO much better. There is of course no support for the colostomy bag and so I think that your comfort in that area will probably need to be supplemented somehow. I use a high waisted tummy control panty. Hope all those details help you! BTW guys….bella bands could also be beneficial to you. They work especially well if your wearing close hugging shirts. – Best wishes for comfort. The only down side I have to share…if I put it on after a shower the mositure can lag around all day. :(

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    ML Reply:

    picked one up yesterday and it was a sigh of relief. Glad I could make you laugh Kristine.

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  119. avatar

    Kristine says:

    December 16th, 2009 at 8:43 pm

    I have seen 3 or 4 staples pass along with the normal mucus discharge. I have had step 1 surgery only. Has anyone had this experience or been told it was normal? BTW what is a normal discharge from the pouch when your in between surgeries? I was told mucus…but is there a color or consistency norm anyone cares to share? – hope its not just me!

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    ML Reply:

    I havent seen any staples pass through me. But my discharge from bottom was fluid like and had some color right after surgery. Then it was more like mucus with a tinge of color. Now it seems white and fluffy like corn. What a nurse told me when I called to ask if it was normal to feel like I had to go to the bathroom and that stuff would come out. I was told it was totally normal. The stuff that comes out at first is due to surgery than later it is because it is a living organ inside your body. It is doing what it thinks it should be doing and that it a good thing. I guess mother nature lets it discharge something so it works. That’s what I got to offer.

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    Megan Reply:

    Kristine, I hope you called your surgeon and let them know you were passing staples. I haven’t heard of those being passed before so I would contact surgeon asap. As for the mucous, Mark (my husband who had the surgery), he passed lots of mucous when he had his temp ileo. In fact every time he would urinate he would pass mucous that was off-whitish in color. The mucous is great b/c it means you are naturally doing your kegels holding in that mucous till you can expel the mucous. And yes, it is totally normal to pass the mucous like ML said, that jpouch is living and still active even though waste isn’t yet passing through it.

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  120. avatar

    Dan says:

    December 17th, 2009 at 11:33 am

    Hi. Approximately 2 months ago, I had an emergency colectomy and am now scheduled for part 2 (the pouch creation) in January and part 3 (the takedown) a month or so afterwards. I recently found out that a partner of my surgeon does part 2 and 3 combined in 1 surgery on about 80% of his patients. He doesn’t know if he will combine these procedures until he’s in the surgery.

    I am curious if anyone has had part 2 and 3 combined. My initial surgeon indicated that there have been periodic pelvic infections when they combined. And that is why he does 3 procedures. Thoughts appreciated.

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    ML Reply:

    Hi Dan,
    I think the surgery is based on the condition of the patient. Some of us had three step surgery and others like myself will end up with two step surgery or had two step surgery. I had my first part of two done on Nov. 17th. I will have the second in Feb (2 week.). I was lucky to have had a successful laproscopic surgery for part 1. I did end up with a fluid abcess in my lower abdominal cavity but it cleared up quickly. Just had to spend a few more days in the hospital with a few extra pains and aches. It may also depend on surgeon and what their experience and level of comfort is. My surgeon used a robot to help preform the surgery which I thought was pretty cool. He is only one a few doctors nationally that are working with a robot. It is a way to help cut down on nerve damage in the lower region.
    Hope you get the surgery you would like.
    ML

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    Mark Reply:

    Yes, ML is right that is all depends on the patients health and what the surgeon has to work with when they get inside the body. It is hard to not know when you go into surgery, but be prepared and accepting of either outcome. You just have to trust that surgeon will make the best decision based on what your body is telling them. Be flexible and stay positive and good luck!

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    Dan Reply:

    ML and Mark. Thanks for your perspectives. Very much appreciated. Dan

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  121. avatar

    ML says:

    December 18th, 2009 at 10:16 pm

    SO need to vent. My pouches were on back order. You know the velcro close type for the two piece. So they sent me the ones with the clip. I HATE THEM!!!!!
    POUCHES on back order with sterling medical….I am dreaming and waiting for you in TX. Maybe Santa will bring them in his sleigh.

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  122. avatar

    Mark says:

    December 19th, 2009 at 9:29 am

    I never used the velcro type only the clip. I heard the velcro ones are easy though. Santa will bring you some assuming you are on the “good” list.

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  123. avatar

    Kim says:

    December 21st, 2009 at 3:43 pm

    I just had surgery 1 of 2 one week ago. The surgery was supposed to take 4 -5 hours and I was in surgery for 9 hours. Apparently, the surgeon didn’t have a lot to work with when he got in there and had to use a lot of tricks and patching to make the j-pouch. I am recovering as well as possible, I guess. Worse than I thought. I’ve had two c-sections before and this is definitely more as far as recovery. I have to admit, getting use to looking at that pouch on my body is difficult.

    I wonder if others have had this……blood from the rectum. I have heard mention of the mucous, but not so much the blood. Any others have this? The doctor said it is normal and just the j-pouch “waking up.”

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    Kanaka Reply:

    KIM: (((hugs)). Initial few days, I had blood from rectum. My surgery was also 7-9 hours long (laproscopic). Feel free to email me and we can chat. My id is kanakab at hotmail.com

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    ML Reply:

    Kim, I too had two prior c sections and thought this surgery in and around the abdominal area (entering the same area as c-sections) that the recovery time and feeling would be a walk in the park. Ha! Was I wrong. I thought this was much harder. My thought is this. When you have a c section…you have something to look forward too. Your pain is transferred to love and getting a reward….holding a newborn. When you have this surgery all you have is a bag and the hope for step two to come quickly. I remember saying in my drug induced stages of post surgery recovery (day of) and day one after surgery that “this is not like being in the maternity ward.” I am five weeks out now from surgery and although I am getting around MUCH better than at first I still tire very easily. Lots less pain and sleeping is getting a lot easier. I am still very restless when it comes to looking at myself with the bag but it is getting a bit better and easier to work with as far as understanding timing of out put etc. It is all a matter of time for each person. I can say that this has been a real mental thing for me. I found no relief in having to have this surgery in the beginning because I was in a full remission stage and had been for three years. NOW the relief is this….I HAD stage 1 cancer in my rectum and we didnt know this until after the surgery was done. This surgery truly was a blessing though I did not know that until week three post surgery at my first post surgery visit. I am truly thankful so I think now my mental mind set has changed and it has made getting better and dealing a bit easier.
    I had a bit of blood in the first few days but then mostly liquid. I did have some blood after my second diliation and internal j pouch check on Monday… the suctioned a lot of liquid out of me and I’ll tell you it was painful but being awake and having some one poke you in the bottom should probably be painful. The blood they told me was normal after that procedure. My surgery was also over seven hours and my surgeon too had to play with my small intestine to get it to reach. His first thought he told me was that it wasnt going to reach but then magically it did. I and others had been praying for a “long” small intestine on surgery day so that magic must have been god’s hand at work. if you click on my name you will find my blog. Stop by. you can also reach me at mlguy@comcast.net if you’d like.
    ML

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  124. avatar

    ML says:

    December 22nd, 2009 at 9:32 pm

    My beloved pouches arrived today. The back ordered velcro closure type oh how I have missed you! Thank you Santa for the early gift. Now if I wasn’t so scared to take the pouch off and replace it. I know just like tupperware…but call me chicken….Will wait unitl Thursday when the nurse arrives. Good news is I changed my appliance ALL by myself on Monday….HUGE for me…..NOT A NURSE IN SIGHT.
    Have a great night everyone!

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    Colin Reply:

    I had my first surgery right around the same time as you and it took a couple of weeks, but I got the hang of changing the bag now. Actually, my bag got too full of gas a few days ago while I was sleeping and popped open. I managed to change the whole thing at like 4 am while probably 20% awake. It’s all muscle memory now, lol.

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    ML Reply:

    Oh my goodness I didnt think about them popping. The last two mornings I have woken up at 7am with a balloon in my pants. Grin. I have been able to add a few more items to my diet and leaving the all soft foods behind finally so I am wondering what is that is giving me the gas. Hopefully I wont experience the pop.

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    J Haas Reply:

    ML: Are you using two piece or one piece? If it’s a two piece, you’ll get the hang of “burping” it before it pops. With my double barrel, I actually had times where these was so much gas that it actually forced liquids down into my pouch (through the distal opening) rather than popping! That was quite a scare that day… “Hey, this isn’t connected yet! How did you get there!” :^)

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    ML Reply:

    I have a two piece by convetex. I like these but the filters wear so easily. You’ll have to email me the “burping” technique. I have had some drainage so to speak into my distal opening and had to call the on call doctor on Christmas Day about it. It freaked me out because before it was just mucous and such but this was what was in my bag. He told me not to worry unless I had pain, fever and was throwing up. Then I would need to call back. He said it is over load and well I did enjoy my BIGGEST meal since day before surgery on Christmas eve. Have watched my intake and has been fine over the last few days. ML

  125. avatar

    ML says:

    December 24th, 2009 at 6:57 pm

    Merry Christmas Eve!!!

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    Mark Reply:

    Thanks, ML. Happy Holidays, Hanukkah and Kwanzaa. And most importantly, happy New Year.

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  126. avatar

    Daniel says:

    December 27th, 2009 at 5:05 pm

    Hello.
    I am planning on having phase 1 of the surgery early next year. I have read a great deal of material on this site, and am very thankful that there is a community out there. I was wondering how I will know when the bag is full at night? How do you know that it is full and time to empty, or does an alarm go off :)

    Thanks.

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    ML Reply:

    Hi Daniel, First best wishes on your upcoming surgery. I would say that the bag issue is one that you will start working with right away. right after surgery it fills with bile and you will be emptying right away or at least I was. I remember there was a time where a nurse did it once or twice the first day because of the state I was in…just out of recovery and then at night when I was really sedated. When you get home you may feel sore and it might be hard to sleep. So you will get to “know” your night time self. I felt like I was up all night emptying and I was barley eating. I dont say this to have you filled with fear. remember everyone is DIFFERENT. But now (Tuesday is six wks post step one) I sleep from I would say 1130 to 7am w/o wake up. My bag is not filled to the brim…not even 1/2 way but I have noticed it is filled with gas which is different than in first four weeks because over the last two weeks I have been adding more foods back into my diet. I empty my bag every time I go to the bathroom no matter if it is full or not. I just dont like the feeling of a bulge or close to it in my pants….suppose now you can tell that I am female. Grin. I have noticed that if I get really busy or caught off guard that I will feel a pulling on my bag. The weight of the fluid makes a difference. The one thing that I would recommend and I only say this because it has worked for me is this. Wear your belt (connects to the bag if you have a two piece) for the first full day that you change the bag. It really does help, maybe it helps me mentally to think that my seal is secure but even my home nurse and the ostomy nurse in the hospital told me to wear the belt as much as I could. So I hope that gave you some insight. If you want pop by my blog and read my story. If you click on my name it will take you there. Best of luck. ML

    [Reply]

  127. avatar

    ML says:

    December 28th, 2009 at 10:07 pm

    tomorrow is week six post surgery. Wondering when most of you got back to say the gym or working out. I am dying to get back to running and doing jazzercise. Should be a lot easier too as I have lost weight. My silver lining, grin! I walk but I do still get tired easily.
    My doctor said prior to christmas as I wont see him until the 4 of jan. that he might release me to pick up babies after that check up. PRAISES!!!!! I cant wait for that although they then probably wont want me to cart them around. Too bad, mommy trumps all baby wants.

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    Lisa Reply:

    My doc released me to do anything after 2 weeks but I thought he was crazy. It was more like, I can do whatever I feel okay doing. I am 5 weeks post surgery now and ready to start working out because I’m feeling pretty good. I still have an incision around my stoma that’s not fully healed but I just think I need to take it slow. I would suggest the same. As long as you’re feeling good, do a little at a time and add more stuff as you’re feeling better and better.

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  128. avatar

    Brian says:

    December 30th, 2009 at 7:31 am

    hey everyone, im a 42 year old mail, going in for j puoch surgery next friday 1/08/10 my post op is 1/05 at brigham an womens in Boston,, any help or suggestions would be great, actually looking forward to the surgery, I have had uc for more than 20 years on an off, thuis past 2 years have been hell, this sight has been great with info, thanks again

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    Mark Reply:

    Hey Brian, 20 years is a long time to deal with UC. I did it for 7 years and couldn’t wait to get the surgery. I think the best advice I have is to be really knowledgable about what is going to happen. Stay positive is key to healthy healing. Accept the stoma, don’t reject it, don’t fight it, just go with it and enjoy how good you feel with it. And while recovering be sure to get out of that bed as soon as you can and walk walk walk to get your body back to functioning. Also, we are here if you need anything! Also, there is great support over at jpouch.org too.

    [Reply]

  129. avatar

    ML says:

    January 4th, 2010 at 3:41 pm

    Dilation and suction question.

    So I have been going through this process for four weeks now. Each monday for the last four weeks and I can honestly say I hate it to the point of passing out. I know it is “important” to my healing so nothing closes up down below but man on man is it a pain in the well…you know.

    So the doctor offered me to be put under for hopefully the last three as we are at 7 weeks tomorrow and he is thinking we will see surgery right after the dilation of the 10th week.

    So my big question is……Has anyone had to have dilation AFTER the take down????

    ML

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    Colin Reply:

    I’ve never heard of dialation, ML. I’m only through one step of three, so I don’t have an internal pouch yet, but does everyone have to go through that? My surgeon’s never mentioned it before.

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    ML Reply:

    Colin, Dilation has been explained to me as a way to keep the pouch from closing. We arent using the pouch and so it may have a tendency to close up. You dont want it to close up because than there is problems later. I have heard of people having the dilation done after the take down but my surgeon has been doing it and stresses that it is part of the healing properly routine. Maybe mine just requires it for healing. Not sure. Probably a question you should address with your surgeon.

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  130. avatar

    Jackie says:

    January 11th, 2010 at 9:17 am

    Hi Everyone, I know this isn’t exactly a Jpouch question but I have not found a good forum for people with active colitis. Since I know there are a lot of people here who have or had colitis I figured I could ask away. SoI have recently gotten off my steroid taper. I went down from 40 MG/day for over 6 months. But since then I have been feeling nauseous and dizzy a lot. Any one else experience this? Think its withdrawl? I get nauseous when I’m hungry and often when I’m going to the bathroom.

    I thought since I tapered I wouldn’t have this problem. I pretty much refuse to go back on the ‘roids so I almost hope its something else. ARG. Damn you Colitis!

    [Reply]

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    Emily Reply:

    I would give your body some time to get the steroids out of your system before you consider going back on them. I would get dizzy and have really bad headaches when I tapered off the steroids. As you know, it is a pretty strong drug so drink lots of water and get them out of your system. I hope that they at least helped your flare Jackie!

    [Reply]

  131. avatar

    Joe says:

    January 11th, 2010 at 2:45 pm

    I just got THE call to reconnect. I presently have a temporary loop ileostomy.

    My operation should be in 2 weeks. My first operation was at the end of September.

    How long was the recovery period for the second surgery? Were you able to go see a movie after 10-14 days?

    Your input would be very much appreciated.

    Thanks again

    [Reply]

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    ML Reply:

    Today must be a good day for Take Down surgery news. Congrats.
    My doctor today booked mine for week 12 which is in four weeks. Hopefully the pouch study to make sure there are no leaks secures the surgery date!!!
    I am so excited!!

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    Colin Reply:

    Congrats, guys. I’m pretty jealous…I still have to wait another four months before my *second* surgery, then another three before my third (takedown) surgery. Good luck with everything.

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  132. avatar

    ML says:

    January 13th, 2010 at 7:14 am

    curious how long most of you stayed in the hospital for the take down surgery? My doctor is say one day. I am skeptical on the one day.

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    Mark Reply:

    I was in 4 days, feeling good but dr. making sure everything woke up fine and was functioning good.

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    Emily Reply:

    Oh ML, I pray they keep you longer than a day! It would be truly irresponsible of them to kick you to the curb! I would count on at least 4-5 days like Mark said and then home to your babies! But don’t pick them up yet, I know it is tough but allow yourself to fully heal so you can be super mom even faster! My prayers are with you!

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  133. avatar

    Joe says:

    January 13th, 2010 at 2:34 pm

    Sorry to repost this, but I would like an answer. Just curious on your experience. Thanks

    I just got THE call to reconnect. I presently have a temporary loop ileostomy.

    My operation should be in 2 weeks. My first operation was at the end of September.

    How long was the recovery period for the second surgery? Were you able to go see a movie after 10-14 days?

    Your input would be very much appreciated.

    Thanks again

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    Emily Reply:

    Hi Joe, I had my first surgery June 2009 and takedown at the beginning of August 2009. As you know, first surgery…really rough. Second surgery, still painful but so much easier. I had my takedown on a Monday and was out Saturday morning. It will be sore to walk but DO IT! You will probably feel pressure to go the bathroom a day or two after surgery. Ask for tushy cream and bring your own toilet paper (the good stuff…spare no expense!) I would say that I felt really good and off pain meds about 3 weeks after surgery, so about two weeks out of the hospital. So my answer to your question is “yes,” I think that you would feel well enough to go the movies and sit through a movie without having to run to the bathroom! You just may have some discomfort with your j pouch stretching and learning to work. It is a process and will take practice learning how to hold it and how long you can hold it. Can you imagine…having time to find a bathroom and holding it…good days are coming! Best of luck with your takedown Joe!

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    Joe Reply:

    Hello Emily, thanks for your response. It really eases my concerns. Just curious. How long was your second surgery (ie. 1 hour, 2 hours, etc?). Was your J-Pouch already connected or was that done at the second surgery? Thanks again.

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    Emily Reply:

    Hi Joe, glad I could be of help! My second surgery was just the reversal of my temp. ileostomy; the colectomy and j pouch formation had been done during my first surgery. Surgery #2 was about three hours because my surgeon had to clear away some scar tissue that had formed and some damaged skin that caused me a great deal of pain around my stoma. She also had to take out a small section of small intestine near the loop because of all the irritation. But, from what I hear from others, it can take as little as an hour if no additional work has to be done. Let me know if you have any other questions!

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    Eric Reply:

    Hopefully you’ll find that this surgery is much much easier to recover from. I had 3 step surgery, so after my takedown, I was in the hospital for a few days, I think 4-5 total. I do recall that I was discharged on a Thursday and having a small dinner party at my house on Sat. Your mileage may vary. Good luck!

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  134. avatar

    Lisa says:

    January 14th, 2010 at 9:07 pm

    I went to change my ostomy bag today and noticed that my skin is getting very irritated underneath the bag adhesive and there’s tiny blister-like bumps beginning to appear. This happened pretty quickly over the last few days because it wasn’t like that when I changed the bag 4 days ago. Has anyone dealt with this issue before? What should I use to help the irritation? The powder? I was going to put calamine lotion on it and then put the bag over it but I’m concerned the bag adhesive won’t work as well. Any thoughts or ideas would be helpful.

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    Mark Reply:

    Lisa, The skin irriatitation is a hard thing to handle for sure. Jason, a perm ostomy, had made this great list of advice on how to handle skin and ostomy, you may find it helpful http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/5071010732/p/1

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    Mark Reply:

    Also, see below comment from Janet.

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    ML Reply:

    Lisa, my nurse had talked to me at one point for irritation to have the doctor prescribe Nystatin Powder. NOT the sauve or cream, only the POWDER. It is suppose to be amazing stuff!!!
    I didnt end up needing it but thought to pass it along.

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    J Haas Reply:

    Lisa, I utilized the Nystatin powder as well and it was a god send. I would use it during each change to keep any growth or irritation from forming. I would change my bags every 4-5 days and as long as I used a little powder, it would keep it at bay. Going longer than that for me (around 6-7 days), I would start getting irritation, but the powder would clear it up before the next change. The powder goes a long way as well: One bottle lasted me almost 6 months.

    – J;

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  135. avatar

    Janet says:

    January 16th, 2010 at 5:53 am

    Hi Lisa,
    I had the same problem. The stoma nurse prescribed Cavilon which is a barrier spray. You use it on the skin where the bag sticks after cleaning the stoma and it acts as a barrier between your skin and the bag. Not had any problems since.

    Hope it works for you too.

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  136. avatar

    Colin says:

    January 18th, 2010 at 1:03 am

    Hey guys, quick question…I’m two months out from Step 1 of 3 and I was given the go-ahead to eat “fresh fruits and veggies” by my surgeon’s nurse. Now, I had two return trips to the hospital right after my surgery because of blockages, so I’m pretty nervous about adding new foods. When you guys got that green light, what kinds of foods did you eat? Could I eat lettuce? How about green peppers? Onions? I’m scared out of my mind by the thought of getting that blockage pain and nausea again, but I badly want to diversify my diet beyond pasta and potatoes. Any advice?

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    Mark Reply:

    Colin, I had 3 blockages while I had my stoma. Here is my experience and what I learned. At first, I thought it was the food I was eating, one day I had eating two bowls of raisan bran and had a blockage, I thought maybe it was too much fiber. The other two I was eating normal foods like sub sandwiches with veggies, etc….And I thought again probably the food and my BM was too thick or something. Well, turns out that after surgery for my takedown (went into my takedown with a blockage), my surgeon said I had SCAR TISSUE that was the likely cause of my blockages. I guess I’m just saying, go ahead and try foods and if you get a blockage don’t eat that food again, but you may be like me where it isn’t the food but just scar tissue from the surgery.

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  137. avatar

    Kristine says:

    January 18th, 2010 at 7:15 pm

    Hello Everyone, I wanted to know if anyone has donated their unused ostomy supplies? IS there a forum that talks about ostomy supplies? I purchased so many supplies trying to figure out what would work. I have extra everything. Ideas?

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    Eric Reply:

    Hi there,
    My ostomy nurse was very happy to receive my unused supplies once I had takedown. Try that?

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    Linda Reply:

    FOW-USA will accept supplies and send them on to medical professionals around the world to give to people who cannot afford their own – they just sent a large amount for the people in Haiti. See http://www.fowusa.org/newsite/page.php?page=home . To donate to those in the US without insurance coverage, see http://www.ostogroup.org

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    Beth Reply:

    Medwish International will take your unused supplies, they also are collecting donations for Haiti. But they also give supplies to those who need them.

  138. avatar

    ML says:

    January 25th, 2010 at 11:34 pm

    I just wanted to ask if anyone out there was feeling or had felt strange about intimate relations while living with their ileostomy. I only have a couple more weeks before my reversal but know then that brings on a whole other section of “time” spent healing. man I miss what I have been missing. Trying to keep it clean folks for the little people on this board by the way….
    I just havent felt the drive even though I would really like too. I think it is poor self image related.

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    J Haas Reply:

    ML: Once I felt healthy and no longer having pain (about 2 months), I had the drive. My wife was highly supportive, but it was still uncomfortable for me at first. I wore a two piece, so I could tuck the bag under the belt. After a few times, and thankfully no accidents, you sort of forget about the bag. (Let’s be honest, there’s more important things to be focusing on!)

    On the JPouch.org forums, this has come up many times and focused specifically for women. I’d try surfing around there to maybe get a woman’s view: http://tinyurl.com/yc28d8l

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    Crystal K Reply:

    The self image thing is really hard to get over. I was able to resume intimacies after not being in pain. It gets easier on the self image area, however I had my ileostomy for just shy of 10 years. I did meet my husband after I received my ileostomy. I am not sure how I would have reacted with a short time ileostomy. I just had a one step j-pouch on 12-10-09.

    [Reply]

  139. avatar

    Daniel says:

    January 26th, 2010 at 3:24 am

    I am in my second week recovering from Step #1. Thank you community! I had to return to the ER twice because I did not respond to oral pain medication too well (as in, Oxycodone does about the same for me as Smarties). Other than that, I was a model patient and was able to leave early. My advice, be certain the oral pain medication works prior to discharge (my fault).

    I am starting to get the hang of changing the bag myself, and imagine I’ll be an expert by the time of my takedown in April/May.

    How long until ya’ll were experts in changing?
    When should I cover my small wounds with simple bandaids, instead of steristrips and waterproof tape?

    Thanks.

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    ML Reply:

    I just would say that I have gotten the hang of it but it might be that I was babied a bit. I had a home nurse that came twice a week for the longest time and than we winged me to once a week or every four to five days. This past Monday was my last visit with her. We were both sad. I only have 12 days until the take down and feel very blessed in having insurance that covered a home ostomy nurse for so long. If I need a nurse for wound reasons after take down I am hoping to get the same nurse.
    I’d say that it would have come quicker to me if I wasnt so dependent on Rose. I heart Rose!

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  140. avatar

    ML says:

    January 28th, 2010 at 9:36 am

    Surgery date secured for FEB 9th! I could not be happier to have an upcoming surgery!!!

    [Reply]

  141. avatar

    Michael R says:

    January 31st, 2010 at 4:56 pm

    I just got home from the hospital today. I was in for 2 days getting treatment for C diff, UC flare, and severe dehydration. I’m gonna talk to my GI on Tuesday about scheduling a surgery. I appreciate everyone on this website who has shared their stories, good and bad. I know it’s going to be a rough 6-12 months, but thanks to all you guys I know I have something positive to look forward to on the other end. Keep up all the great work you’re doing!

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    Megan Reply:

    HI Michael, sorry to hear you’ve been so sick. Once you’ve exhausted all your medical options is the best time to talk about surgery, but trust your GI and get a good consult with an excellent surgeon. Here are two excellent webcasts from a very reliable source you should definitely listen to help you understand the surgery decision: http://www.jpouch.net/2008/06/23/discussion-on-to-wait-for-uc-surgery/ and http://www.jpouch.net/2009/01/04/webcast-which-meds-or-surgery-can-help/ and you should read Brevin’s journey into making surgery decision and his full surgery experiences. Read this page from the bottom post up http://www.jpouch.net/author/brevin/page/2/

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    Michael R Reply:

    Thanks Megan. I’ve run the gamut of treatment options and remicade has failed. Steroids are the only thing that work and, well, you know how that goes. I read Brevin’s posts this afternoon as well as all the other stories. I’m trying to wrap my mind around the possibility of surgery and trying to reconcile all the gains with the costs. This is a great site!

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  142. avatar

    Megan says:

    February 1st, 2010 at 8:33 am

    Michael, Sounds like you are right at the impass of surgery where all meds have failed but pred. and we all know that isn’t the solution for long-term. Mark (my husband) was the same as you, he did it all and last chance drug was remicade which worked for 3 wks then nothing. After that the decision was easy to make for surgery for him/us. It sounds like you are right where people go for this process to decide, it is great you are exploring all your options and coping prior to making the decision. Just from our experience Mark has his at 31-32, now 34, he works full-time is healthy with few complicaitons and happy, healthy active life. We also are expecting our first baby this summer. Life does go on after surgery, especially if you are ready to accept the recovery and reality of the surgery. Also, you will find we are a good resource and so is http://www.jpouch.org for getting information and making contacts.

    Finally, the most important thing is that your family/friends are on board and they can support you through this because it is a big deal and you’ll need all the unconditional support you can get. Although, your jpouch community is here and we can help with anything :) Keep us posted, and maybe you’ll want to blog your story on this site?

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    Michael R Reply:

    Megan – I’m scheduled to see a surgeon next monday and I guess I’ll go from there. I’ve been making a notebook since getting out of the hospital last weekend, so I might be willing to share my thoughts later on. Oh, and congrats on your baby!

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  143. avatar

    ML says:

    February 5th, 2010 at 12:42 pm

    It’s official. 1pm Tuesday 2/9 at St. Lukes! Just got the call. Take Down here I come!!!!

    [Reply]

  144. avatar

    Dan says:

    February 7th, 2010 at 6:34 pm

    Hello everyone. It’s been 2 weeks since my combined 2nd and 3rd surgery and I’m now home recuperating. My problem is that I feel like I’m tethered to the bathroom. I’m going constantly. The surgeon gave me a Rx for lomatil and it appears to help a bit when I take 2 doses in an 8 hour period. Once I stop taking, the frequent bowel movements start up to the point that it’s pure liquid. Is this normal? Will it stop? Should I consider taking something else? The Lomatil makes me drowsy. What about fiber? I’ve read a few posting about taking fiber. Thanks everyone.

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    Mark Reply:

    Hi Dan, Yes, my first two or so weeks after takedown felt like I had UC again – here is my takdown photo journal http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/ . Early on I did a mixture of immodium and metamucial. But read this post here first on imodium because it works very specifically and you have to give it time in your body to collect up http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/ (See the response from Jan and she’ll explain how the anti-dia. meds work). We can’t just take them on and off, we need to take them for a long period of time and consistently for them to work. And yes, I used metamucil to thicken up the liquid and it really helped me. Try it out and give it some time because too much may make you gassy, too little won’t work, etc…so you’ll have to find what works for you. Keep us posted on your status! Hang in there because it will get better.

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    Dan Reply:

    Thanks, Mark. Your and Jan’s feedback were really informative. I’ll try taking the 2 together and see what happens.

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  145. avatar

    upsidedownhannah says:

    February 7th, 2010 at 11:40 pm

    Hi everybody, I had the first surgery in October. Pretty much ever since surgery, I’ve had problems with my J pouch spasming and cramping and bleeding. I got diagnosed with pouchitis. I’ve done 6 weeks of cipro with no improvement and I’ve been doing steroid enemas (fun fun), but nothing is helping. They talked about doing the Asacol type drugs, but I’m allergic. Has anyone else experienced pouchitis before takedown? If so, was there anything that helped you? Thanks! This is such a great site and really helped me when I was getting ready for surgery!

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    J Haas Reply:

    Hannah: I had fluid collection around the pouch after step 1 which was causing similar symptoms to pouchitis. I was on a course of Levaquin and Flagyl and noticed improvement within a day or two. By the time I saw my doc, symptoms were gone and nothing in the pouch. Have you tried other antibiotics yet?

    Since takedown, I’ve had a roaring case of pouchitis and cipro helps, but has not “cured” the pouchitis. I’ve also tried Xifaxan, but unfortunately made the symptoms worse.

    – J;

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    upsidedownhannah Reply:

    Thanks for your response. I’m doing Bactrim now. It’s not helping yet, but it’s only been 3 or 4 days. Although I’ve heard that if they’re gonna help, it begins to improve within 48 hours. I’m going to the Dr next week. His PA called yesterday and basically told me that I need to prepare myself, because I’m probably gonna lose the J pouch since it’s not responding to treatments. How long has it been since takedown for you? I’m worried about doing the takedown (and it may not even be an option for me) because if I feel this bad when the pouch isn’t even connected, I’m gonna feel just like I have UC again after takedown.

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    Kanaka Reply:

    I have heard VLS3 (google it) helps with pouchitis. Try it…GL.

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    upsidedownhannah Reply:

    Kanaka: I have heard of VSL#3, and I did the probiotic Align before surgery (clearly didn’t help me, but I know it works for some folks, which is awesome!). But I don’t think probiotics will do my J pouch any good as I’m not “hooked up” down there yet, ya know what I mean? I still have a loop ileostomy, so the bacteria would never get to my J pouch.

    J Haas: how bad is pouchitis after takedown? I’m not even “hooked up” and it’s spasming so much that I have trouble sleeping and have to run to the bathroom like 10x/day with blood and junk – is it just like having UC again? Are you going to keep your J pouch?

    Thanks everyone for the tips! Click my name to see my blog.

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    J Haas Reply:

    Hannah: It’s tough to say “how bad is pouchitis after takedown”, as different people respond differently. Some people never get it, some get it and rid themselves quick, some get it and control it with meds, and some get it and can’t control it. I had limited problems before takedown and a short course of Levaquin took care of them (docs never called it pouchitis). I had the same spasming and pain as well, but eventually the collection and irritation were cleared: I had minor bleeding and frequency, but mostly debilitating pain in the rectum/anus area.
    Am I keeping my JPouch? I’m committed to trying all avenues, even exploratory surgery, at this point to try and keep it: That is the reason for this journey. I am more than mentally prepared to go back to an ileo, as I was quite comfortable with my temp. Again, each one of us is different :^)

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    Mark Reply:

    Hannah, you definitely need to look into the probiotic VSL 3 and talk with your doctor about using it very seriously to get your flora back. I know people that use it all the time to prevent the risk of VSL 3 (there is research to support this claim). I’ve had pouchitis three times with my jpouch and it was handled with cipro. Made me feel instantly like I had UC again and took a lot of out of my body, but I figure it is small small small price to pay for having the jpouch and living such a wonderful normal and healthy life. yes, I am definitely keeping my jpouch.

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    upsidedownhannah Reply:

    Again, thanks everyone for the replies! Y’all are amazing! I read the papers on VSL 3 and it seems like it’s really effective. Maybe this is a dumb question… I am in between surgeries, so how would the probiotics “get” to the pouch since it’s not “connected” yet? Will they do my pouch any good right now? I will definitely look into ordering some (but it’s SOO expensive! I wonder if my insurance would cover them?). I am so desperate for something to help, b/c the pouch just feels awful. It’s to the point where it is uncomfortable to sit and I can’t sleep since I’m on the verge of having an accident every fifteen minutes. Gross, but it’s like having UC without the poop, lol! Just lots of blood and cramps! I had arthritis and rando fevers before surgery, and it’s all coming back now, which I read can be related to pouchitis. I’m just pretty miserable and would love for something to work to help my poor little inflamed J pouch! My surgeon told me it was impossible to get pouchitis before takedown… then he scoped me and was like, “Oh. That looks real bad.” Thanks, everyone – I welcome your support and suggestions!

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    Megan Reply:

    Hannah, I tend to sit on the side of caution but your surgeon’s response seems to be a bit dismissive to your situation. Have you thought of seeing another surgeon/GI for a 2nd opinion? Because you shouldn’t be told it just looks bad and not be told about natural and medical interventions shown to work, plus, you should be given full information regarding your situation. For instance, has your doctor done the steps to rule out Chron’s for you (I’m not saying you have it, but if it isn’t pouchitis – which you can have b/c your pouch is very much alive and function

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    Megan Reply:

    opps I sent before I was done…..All I’m saying is that you need answers and there are answers out there. And if it were me, I would be curious as to why my surgeon or GI never talked with me about VSL 3 when obvsioulsy other jpouchers and research supports the concept. I’m not saying you are getting bad care, but I do think as patients we have the option to seek answers for our health concerns and if one health provider isn’t answering me, there is NO reason I can’t find someone who will answer me.

    Yes, some insurnace covers VSL3 especially if the doctor approves it as part of the treatment.

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    Megan Reply:

    Hannah, One more thing, you may want to also post your situation over at jpouch.org and see if any readers there have had similiar expeirence to you.

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    upsidedownhannah Reply:

    I do feel like my surgeon is being a little dismissive… He is a great guy, but I think that this is maybe outside of his realm, because I was the one who suggested I try the Cipro back when I started having problems – he didn’t suggest it. Makes me a little concerned that he doesn’t really know what he’s doing. I will probably ask him if I can just go back to my GI Dr – do they treat pouchitis? I will also look at Jpouch.org – thanks for the suggestion.
    Last week, I had a CT scan where I drank junk and had dye injected, ’cause I was also having on and off severe stomach pain (yeah… it’s been a bit of a rough ride lately!). It didn’t show any problems or any Crohn’s, thankfully. I think I probably have some scar tissue gumming up the works, so I’m being more careful (no more salad, lol) and the pain is better. I brought up VSL 3 before I had surgery and my surgeon said I could try it if I wanted but didn’t seem overly impressed by it, so I didn’t push it. Obviously now, I wish I had… but I will ask him if he will approve me for it at my appt on Tuesday. I have a bunch of questions written out for him and I’m not leaving til they get answered. Not in a rude way at all, but I just really need some answers and a better plan. I’m 4 months out of surgery and feeling worse than I did two weeks after surgery. Thanks, Megan, for the suggestions. This site is fantastic and was a great resource as I started thinking about surgery.

  146. avatar

    ML says:

    February 8th, 2010 at 8:31 pm

    Less than 24 hours until take down. Be honest with me. What can I expect. Pain, Poop, stay in hospital. ANY and ALL info would be helpful. I go under at 1pm CST.

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    Mark Reply:

    Physically your body with feel stronger than the first surgery and you’ll feel good. You’ll be very anxious for your “bowels to wake up” but that reality will kick in fast that when they wake up it means your using your anus again after it has been on vacation. Your skin will get raw quickly from lack of use and the liquid early BMs. Pat your butt nicely and bring butt creams to help. Also, be sure to bring a couple roles of soft toilet paper so you don’t have to use the hospital rough TP. When you get home you may have some buyer’s remorse because you’ll be BMing a lot and up and down at night. My first few weeks were bumpy. But stay positive and give your jpouch time to settle into being used for BMs, it will settle down. And come get us for support if you get frustrated, it is a hard transition but a transition well worth the early trouble. Hang in there because in a month you’ll be old ML healthy and happy and this will all become part of your past! Most important, you are healthy now to live nice and long for yourself and your family!

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    J Haas Reply:

    This should be saved as an FAQ: Fantastic post Mark!

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    Daniel Reply:

    You can expect our full support! We’ll be thinking of you and your family today.

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    Kanaka Reply:

    ML: Good luck! Agree with Mark on all the things. Here are some things that helped me:
    1. Butt will be on fire starting day one. Vicodin helps a lot and take it. Apply the butt cream (desitin–creamy)–starting first day)
    2. Fiber: I tried all kinds of fiber, but the only one that was light on tummy was benefiber. Take it! It helps.
    3. Shower: Use sitz bath or just use hand shower to wash your butt multiple times a day. It is sooo helpful. I did not like sitz bath as I kept leaking into it, and hence preferred just shower head.
    4.Tums, Imodium are best friends.
    5. Give yourself 1-2 months and trust me, you will be glad you had this surgery.
    GL!

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  147. avatar

    ML says:

    February 11th, 2010 at 6:03 pm

    surgery on tuesday went longer than expected. Apparently the doctor felt the need to rid my insides of some scar tissue build up. So three or four extra lapro scars now and my stoma site is sewed upwith a small opening. LOTS of pain and no bm’s as of yet. No interest in food and water still tastes bad but all in good time. Wish I could fast forward and just get to the good life with my j pouch. Thanks for all the information and well wishes.

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    Mark Reply:

    That is great that they removed the scar tissue now instead of leaving it to cause problems later and possibly future surgeries. My surgeon removed scar tissue too on the takedown and was really thankful because he believed it could cause blockages. Glad you are done, and you’ll be feeling better soon. Hang in there, these will be an interesting few weeks but SO WORTH it!

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  148. avatar

    ML says:

    February 14th, 2010 at 11:19 am

    my take down was tuesday and I am still in the hospital unable to eat. Throwing up horrific bile and finally pooping….liquid. I am in incredible pain but cant stomach anything so meds are out. I am walking each hour and worn out. I dont know why but I thought this would be a walk in the park and it has been so hard. I miss home and my babies but know better from surgery last time that once I get home I am hands off. So thinking this second run at hands off will be a little easier. So that’s where I sit this valentine’s day. I have a date with my IV drip and we hold each other as we stroll down the cooridors of St. Luke’s. Hopefully a good movie will come on and I can drift off to sleep for a few hours as I have been visiting the bathroom every hour. Til next update…have a great day!

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    Lisa Reply:

    Sorry to hear things aren’t going as well as you’d hoped. Keep your head up, things will get better!

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  149. avatar

    ML says:

    February 16th, 2010 at 8:40 am

    Hopefully getting released today. Wondering a few things. 1. bloat…when the heck does this go away. 2. knowing the difference…between a toot and going number 2? 3. What kind of foods did y’all start with. I have no appaitate as of now but am able to eat some bread and applesauce…bird bites. Water still has no refreshing taste.

    Thanks. ML

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    J Haas Reply:

    Great news ML! My bloating took a few weeks to go away, pretty much the time it took for my stoma site to heal. As far as toots, I avoided what I termed “russian roullete” for a few weeks, as it seemed I always guessed wrong! After the movements became more stiff, then it was easier to tell. When the movements were looser, it was almost impossible for me to separate air from water: Now, it’s possible and I’m thankful and more comfortable for it. I’m still not 100% (maybe 99%), but I’m faster on the draw. Many people suggest a BRAT diet to start, but others have had luck adding more items quicker. I’d take it slow and add items slowly, paying attention to how they affect you. Raw fruits and veggies may be tough at first. I’d also avoid items that may have bothered you before to start. And stay hydrated: Water may not taste good, but it does a body good! Remember, all of us have similar plumbing, but we all respond to food and meds differently, so what may work for one may not work for you.
    -J;

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  150. avatar

    ML says:

    February 16th, 2010 at 5:26 pm

    Home!!!! besides being grateful to be with my family again. I am so happy to use my own bathrooms and my own toilet tissue…I ran out this morning of the good stuff I brought for my stay. Now if I can just figure out how not to be tied to the bathroom. Seems like I am going more now that I walked in the door. Must be a comfort level.

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  151. avatar

    upsidedownhannah says:

    February 16th, 2010 at 5:28 pm

    Thanks, everyone, for the suggestions and support about my pouchitis. I saw my surgeon today and he’s concerned and actually talked to my GI Dr on the phone while I was there. He’s passing me off to him, thankfully, and they decided to keep up with the steroid enemas. Adding in Flagyl to treat pouchitis, Tramadol for pain. They are concerned that my whole immune system is goin nuts b/c I’m also having fevers, lost like 8 lbs in two weeks, and my joints are all stiff and swollen up. So running lab for that stuff. Also, they think my adrenal glands are shut down (so now I get to see an endocrine Dr. Thank you, prednisone). So a lot of stuff to work on, but I feel like I have some workable possible treatments. My Dr seemed to think probiotics won’t do much for me but I’m gonna try anyways. What do I have to lose, right? If the antibiotics don’t work, they are talking about sticking me on immunosuppressants or something, but hopefully that won’t have to happen!! Thanks again for all the suggestions and support. Hope everyone’s having a good day.

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  152. avatar

    Michael R says:

    February 16th, 2010 at 7:45 pm

    Going to see the GI Surgeon tomorrow. Looked up my doc on the internet and shows he’s highly rated. I’m a little nervous with the whole situation and am trying to come up with a list of relevant questions to ask, even though some have been answered on this site. Wish me luck!

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    Colin Reply:

    Good luck, Michael! I know you’ll find the answers you’re looking for and if we can be any help to you, don’t hesitate to ask *anything*.

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  153. avatar

    Tim R says:

    February 17th, 2010 at 8:06 am

    Hi,
    I am Tim a 35 yo male. I have had UC for 14 years and at last had had to have a transfusion of 3 units and had no choice but surgery. I am going through a 3 part j pouch surgery. The first part was successful and with the exception of a fever of 102.3 and a quick trip to the ER last week, due to a non-descript ‘bug’ my recovery has been relatively uneventful. I got a lot out of your website in both preparing myself and as a tool to share what I am experiencing with others. The ileostomy bag takes some getting used to obviously. At first I was very self-conscious of it smelling or making noise etc.. Also since everything I read said it was an odorless system and if I smelled anything then it was likely because of a leak, I was super-attentive to odors. This is fine in the hospital. When I got home after a bit of time I smelled something awful. So I checked, no leaks. Then later on I smelled the odor again again, still no leaks. I changed it when it was time and there were no signs of leaks. Then I noticed there was that smell again, then I noticed my dog leave the room….

    Moral of the story, dog farts do not necessitate changing the bag.:-)

    Thanks for the site and to everyone for their contributions!
    -Tim

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    ML Reply:

    I just lmao!!!! Thanks

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    Tim R Reply:

    I drove 2.5 hours to somewhat rural Maine to visit my parents. When I got there I realized the pouch seal broke. I did not have any extras with me, but luckily, I was able to reinforce the seal with some tape. I ended up taking a ride with them for an hour or so…. smelled something awful…. I am thinking ‘oh no another leak!’….wrong again, we were driving through a goat pasture! yet another example, when you smell something awful while driving through pasture lands it may not be necessary to change the bag.

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    Mark Reply:

    Tim, your humor is welcome anytime on the site. We gotta keep it light considering this stuff isn’t very light much of the time.

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  154. avatar

    MBD says:

    February 17th, 2010 at 10:44 am

    Hi everyone. My boyfriend had his takedown j-pouch surgery on 1/28/10. (Step one was on 2/6/09 and step 2 was on 10/29/09). It’s only been a little over 2 weeks since he left the hospital, but he is suffering terribly from the butt burn. He has tried baths with epsom salt, desitin, prep h cooling gel, boudreaux butt paste, and A&D. Nothing seems to be helping except the sitz baths. I have heard some people talk about Ilex and Calmoseptine, but he is at his wits end and frustrated. He thought this part of the surgery would be the easiest (After Step one he was in the hopsital for about 3 months with an infection, blood clots in both legs/lung, and bleeding ulcers). Step 2 wasn’t too bad, just an adjustment to the way the stoma was protruding, some irritation around the stoma and keeping the wafers on. He eats very little (a little scrambled egg maybe and some ham on white toast), but does keep hydrated with water and gatorade. He takes immodium and was taking lomitol. He thinks the immodium may be causing some constipation which he doesn’t need on top of the butt burn pain. I guess you can’t win. If it isn’t having a problem going to the bathroom, you’re going to the bathroom too much. Anyway, it’s very hard to see someone in so much pain. I know everyone’s recovery is different and I told him not to put a time-frame on his recovery. He has no energy and has been house-bound since he left the hospital. I try my best by trying to find remedies to help with his pain and be there for him when he needs me. Anyway, this is his experiences in a nutshell. If anyone has any additional advice/suggestions for him it would be greatly appreciated. Thanks and have a great day! :)

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    Mark Reply:

    Hi, Sorry to hear the BB is so bad for your boyfriend right now. After takedown that can be an issue. My advice is a couple things: (1) Not to wipe but to pat with super soft TP, and to use wet wipes (with no alcohol in them while the BB is really bad – some of the baby wipes are alcohol free.) (2) I prefer to use Cortaid cream that is my chosen cream, but it doesn’t provide a protective layer, so if he needs to give his skin a break from any moisture hitting it, he needs to buy something strong like Ilex (order from pharmacist) and he can use that as a “protective barrier” so no liquid can touch his skin, but if he using Ilex make sure he puts some vaseline over the top of it or his butt cheeks will stick together and annoying him. (3) With the permission of his surgeon he may want to start taking immodium to slow down the BMs and use Fiber to thicken up the movements so they aren’t so liquidy. Those two things were really helpful for me early in the takedown to help slow down BMs and make them thicker so my skin could rest. (4) And of course he needs to make sure that the area is always always always SUPER CLEAN with pat methods, etc….Let him know this is a common problem for many of us and that it will definitely get better as his jpouch settles in and gets more regular and not so spastic.

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    Kanaka Reply:

    MBD: I had very similar experience and it took my 3-4 mos to figure out what works best for me. Here are the things that worked for me:
    1.Fiber supplement (benefiber powder) thru the day (I take 4-5 tsps spread out in the day)–this is the most imp part!
    2. Imodium as and when needed
    3. Water: At least 8 glasses
    4. Desitin or any cream with zinc oxide after a bowel movement
    5. Wash the butt with water and patt it dry, before applying desitin.
    6. If the itching/burning is too much, my surgeon prescribed me clotrimazole and bethamethasone dipropionate cream….that imm helps!
    Hope he feels better.
    GL,
    Kanaka

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  155. avatar

    Brevin says:

    February 17th, 2010 at 12:56 pm

    Interesting read about a guy who sued a drug company because he had to get colorectal surgery:
    http://www.huffingtonpost.com/2010/02/17/accutane-lawsuit-andrew-m_n_465598.html

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  156. avatar

    Michael R says:

    February 18th, 2010 at 6:31 am

    I scheduled my first surgery for Mar 12th. It’s a very exciting and liberating feeling to know I will soon be rid of this disease and the good-for-nothing colon. I started making a mental list of all the foods I want to eat when the surgery is done. I can taste it now! For now I’m enjoying revelling in the positive aspects of the big upcoming change and not thinking about any of the hard work/complications/etc that may occur. It’s all I can do to keep myself from getting a greasy plate of mexican food and washing it down with a bottle of tequila then calling in sick to work. :)

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    Cynthia C. Reply:

    Michael,

    I wish you luck on your first surgery and a speedy recovery. I also made a mental note of all the foods I want(ed) to eat and mexican is at the top of the list! I haven’t hit that goal yet, as i’m still on a low residual diet, but it won’t be long before i can eat some carnitas and beer! Good luck!
    Cindy

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  157. avatar

    Dan says:

    February 18th, 2010 at 10:26 am

    Folks, does anyone have perspective on the differences between metamucil vs. benefiber vs. other; powder vs. pills? I’ve been taking metamucil for a week now (1x in AM and 1x before sleep) and really not sure if it’s doing much. Has anyone found one to be better than the other? Or is simply personal preferences? Thanks. Dan

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    J Haas Reply:

    Dan,
    I use Konsyl when I’m home or able to mix a powder on the spot (only a little water so somewhat thick). I find this works best for me. When out for dinner, I’ll use either the metamucil pills or wafers, whatever I have at the time. I think the wafers work best for me. I tried Benefiber tablets, but they didn’t seem to do much. I take it after every meal.
    -J;

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    Mark Reply:

    Dan, I was told to use Benefiber with my temp ileo because it is a fiber to help thicken but it isn’t a binding agent as much as metamucil. I was instructed to use metamucil after takedown b/c it is more of a binding agent. Benefiber is gentler which works better for the ileo. And here is a great post by Jenelle on Fiber Supplements http://www.jpouch.net/2009/06/14/fibre-supplements/

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    Tina Reply:

    Dan, Konsyl has a comparison chart you can use to compare the top brands. https://www.konsyl.com/t-ComparisonGuide.aspx

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  158. avatar

    Cynthia C. says:

    February 23rd, 2010 at 11:52 am

    Hello Everyone,

    My name is Cindy and I was diagnosed with Ulcerative Colitis in October of 2009. I first started having symptoms in February of 2008 while I was about 7 months pregnant with my son. I thought the mucus in my stool was a result of being pregnant with a very large baby. I felt fine, and had no other symptoms so I really didn’t have any clue I was developing Colitis. I’ve been healthy my whole life, active in sports and exercise, and at the time I had been a vegetarian for the last 12 years. I started eating meat again around the time I first noticed mucus in my stool. After I had my son, I noticed the mucus came back about three months later. But still no other symptoms. That went away, but in the fall of 2009 the Colitis came back and it was no joke this time.

    First it started with mucus. Then I began to notice I started losing weight and finally, I began to get really tired. I was starting to get worried, because trips to the bathroom were becoming more frequent and hard to hold. The next and scariest thing that started happening was the blood. I began to bleed little at first but by September of 2009 I was bleeding a lot. I began the process of “freaking out” with the idea that I had colon cancer. I can’t even tell you how scary it is to ponder the cancer cloud hanging over your shoulder. I would just look at my family, my new son and become so utterly depressed. My husband began insisting that we make an appointment with a doctor to really find out what was wrong so I could stop this fantasizing of the worst. I knew I was secretly avoiding this because I was so scared to find out what I had. Finally though, I scheduled an appointment and had my first colonoscopy done.

    I was so scared to go through with the colonoscopy! It turned out not to be so bad, but man, I’m sure a lot of you already know how disgusting the laxative is to drink. It’s the worst part. I never finished it and it turned out to be fine. We were told the results of the colonoscopy right after the procedure and that’s when I found out I had colitis. No cancer!

    It’ didn’t hit me right away and I really don’t know if it still has, even though I’ve been through the pain and suffering of having Colitis. My GI doc prescribed Asacol and Prednisone. After three weeks of suffering on Asacol, we discovered I was having a serious bad reaction to it. I became so incredibly sick. The colitis got worse, I could barely walk, I began seeing these intense spots through my eyes, my teeth looked like they were becoming transparent, I was losing weight, and then my liver became inflamed. Finally my GI realized it was the Asacol and I was then put on 6-MP.
    What a disaster 6-MP was. It had the same effect the Asacol had on me. Suddenly my life was at a standstill.

    Now its Christmas time and at this point I had been extremely ill for three months. My husband had almost used up all his vacation at work, and my daughter and son were feeling the effects of my illness. The whole family literally became depressed. We were all just so scared and i know I was definitely suffering from depression. I couldn’t spend any time with my 1 ½ year old son and he wanted me so badly. I’m a stay home mom, so he had been used to being with me every day. I know that Prednisone was having an effect on my moods and ignited the depression in me. I got to the point that I couldn’t even laugh anymore. It was like there was a block on laughter in me.
    Finally, my GI took me off the 6-MP because again my liver was inflamed. I now weighed 114 lbs (I started off at 138) and it’s now January of 2010. The prednisone I was on was horrible. I couldn’t sleep at night and I was so shaky all the time. To top it off, it wasn’t even holding the colitis at bay.

    By mid January things were getting bad. My husband and I began discussing surgery. I decided I didn’t want to be on meds anymore. This was extremely important to me. I don’t want to take medicine my whole life and then find out 1) they don’t work anymore or 2) I’ve developed some other disease from them, and 3)I wasn’t about to take Remecaid after reading up on all the side effects. So, we scheduled an appointment with the surgeon and set a date to proceed. I couldn’t believe I was about to do this. But if it meant no more colitis, then it’s worth it. I’ll do anything to take this feeling away!!

    My surgery was scheduled about a month away. At this time I was so sick, it was almost impossible to get out of bed. I was now 100 lbs. I looked like a skeleton and I had dark circles under my eyes. My surgeon decided to bump up my surgery ASAP so now I was scheduled for it to take place in one week! We went over different options and decided on a permanent illiostomy, which gave me the option of getting the j-pouch surgery when I was back to normal weight and my body was healthy again. I decided to just give the “bag” a chance. It was a great relief to know I could go back and get the j-pouch surgery at any point in my life.
    The week before my surgery I was so scared and nervous. I could not fathom that this was happening to me. I was very excited to get the surgery done, but that emotion was mixed with an intense fear. I’ve never been in the hospital before except to have my two children, so I was really frightened. I was also feeling this strange loss of the fact that I would no longer have a colon! My colon, the thing I was born with, was just going to be taken out and incinerated! Weird.
    Anyways, the surgery was not as bad as I imagined. The pain was intense at times, but nothing like having a baby! I just upped my epidural dose or took more pain pills and voila! The pain was gone. Being in the hospital for a week was probably the worst part. Even though I had some really awesome nurses, (and one HORRIBLE one) it was so awful being stuck in the bed and not able to move around. And then there was the BAG. I just kept reminding myself that the colitis was gone. My colon was gone too. Dealing with a bag of poop was okay compared to not having a life with my family. I was lucky too. A woman next to me was dealing with cancer. And people in Haiti were suffering big time.
    Now it’s been three weeks and I feel pretty good. I’m still sore, but I can go places, clean the house, take care of my toddler Finn, and laugh again! My family is back on track, no more sadness in the house, and I can drink coffee again! My husband was an unbelievable support. He not only held down the fort, but took care of our toddler, my 17 year old daughter, worked two jobs, and continued working on an MFA, AND took care of me the whole time. I wish I could give him a vacation to Mexico with unlimited fish tacos and beer. I’m on a low residual diet for a while and can hardly wait until I can eat regular foods and have some wine! The most wonderful feeling is not feeling the colitis in my body. It’s incredible. And the best part, is it will never come back! I’ll be off steroids in one day. I didn’t find that changing the bag was all that difficult. I can hardly wait to find a bag that feels comfortable and suits my needs. Clothing though is becoming a huge problem. My pants close right over the stoma. I need advice what to do about this! I’m not about to wear jeans that go up to my waist! Do they even make those anymore? Plus, I’ve lost so much weight nothing fits and I don’t want to buy anything until I gain my weight back.
    So thanks to anyone who took the time to read my story. I’ve left out so much believe it or not!

    I have so many questions to ask all of you- I’m hungry for advice! I appreciate any responses.. Thanks again!

    1)Anyone have advice on some sort of “cover” for my bag to not only hold it in place but to conceal it a little better. It’s so annoying how the plastic clasp can hang between my legs. I’m looking for just some sort of band.

    2)Advice on clothes!
    3)What type of bag works best for you?
    4)When can I expect to feel normal, with no more pain from surgery?
    5)Did any of you have back pain after surgery? My back is killing me!
    6)Should I expect a weird feeling after I stop taking steroids? My Doc said I may feel strange, even though I’ve weaned them off.

    Okay, I’ll leave it at that for now. Sorry this is so long! Thanks!

    Best,
    Cindy

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    Mark Reply:

    Cynthia, We put your post on the front page of the site you check here to see for comments: http://www.jpouch.net/2010/02/25/commenter-with-questions/

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    Cynthia C. Reply:

    wow, thanks so much! i really appreciate it!

    best, cindy

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    Rachel Reply:

    Hey! Ok, here’s my answers:
    1)Advice for covers/etc.:
    You might try and get a Bella Band in maternity shops like Pea in the Pod or Motherhood Maternity. I also wore a lot of leggings. Other than that, I don’t know how to keep the stupid bag from hanging there in between your legs. I hated that too.

    2)Clothes:
    Again, I wore a LOT of leggings and long tunics. Anything with ruffles or something to kinda conceal, yet still be somewhat body conscious. I didn’t want to feel like I was wearing maternity clothes again. Dresses were awesome too. Jeans are great as long as they don’t run too tight on the waistband, and smoosh the stoma site.

    3)Bag:
    Hollister, w/ the roll ‘n lock. Nude color. I HATED the see-through kind. They just grossed me out. I didn’t want to look at that poo all the time.

    4)When can I expect to feel normal, with no more pain from surgery?
    It took me probably a solid 4-5 weeks before I felt back to normal after my first surgery. The pain, etc. was just hard, much harder than I had expected.

    5)Did any of you have back pain after surgery? My back is killing me!
    No, not really. Sorry. :( Although, I did find relief by sleeping in a recliner for the first couple of weeks. I just couldn’t get comfy lying flat in a bed.

    6)Should I expect a weird feeling after I stop taking steroids? My Doc said I may feel strange, even though I’ve weaned them off.
    Mmmm, maybe. It can take awhile to get them out of your system. I can’t say I felt any specific thing. BUt it definitely took me awhile before I could stop eating everything in sight. :) Pre-surgery, tho – I was weaned off of them before I had surgery.

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    Cynthia C. Reply:

    hi rachel,
    your ideas are fantastic! of course i should try maternity pants! i didn’t even think of it.. thank you so much!! i also have to sleep propped up and once and while get away with my side..

    thanks again, cindy

    [Reply]

  159. avatar

    Cynthia C. says:

    February 23rd, 2010 at 11:59 am

    Does anyone know how to post pictures on the message board? How do post my profile pic?

    thanks,
    cindy

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    Megan Reply:

    Cynthia, If you want to sign up for a profile picture you just need to open a free wordpress account, takes like 2 seconds. Then you can upload a custom “avatar” photo. If you want to be able to upload photos on this website, you should write us at mdhilton@gmail.com and we’ll talk to you about blogging. We can’t upload photos on comments but we can if we are writing blog posts.

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  160. avatar

    Rachel says:

    February 27th, 2010 at 6:42 pm

    Hey guys! I’m going in for takedown next Thursday. I’m supposed to get a barium xray on Wednesday. Can anybody prep me for what to expect on that? Also, how is the pain level compared to the 1st surgery? Are you able to get up and around easier and faster than with the first one?

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    ML Reply:

    The x ray was kinda uncomfortable but not painful. This is how mine went. They took off my pouch but not the plate. They inserted a tube into the distal opening of the stoma and inserted and inflated a balloon. Now this felt like someone was pumping you up with gas. A little uncomfortable. The kept talking with me and kept asking me how I was doing. at first I said it feels fine as he was telling me that I may feel like I was having gas pains. Then all of a sudden I said “oh, now I feel the gas, stop.” he deflated the balloon a bit and it was much better. He than told me that he was going to start the fluid. That I could watch and he showed me where to look. Now that was pretty exciting to me because I could actually see the pouch. I’d be able to see how my body was working. The doctor told me that I would feel like I might have to go potty because the pouch was filling up and well that organ had not been working. The sensation happened slowly but it’s interesting how when you see it filling up you feel full. Well as I laid there I saw what I had been praying for….no leaks. Because if there were leaks that would mean a delay and no surgery when it was scheduled for. It was a little medical miracle and made the science behind the j pouch creation so real and so exciting! Well I had no leaks so that was GREAT!!! Than I did what i hadnt done in months….went potty in the potty chair. Granted it was just the fluid but it was officially making me one step closer to being healed.

    Pain level after the second. Well I woke up in a lot of pain. They took out a lot of scar tissue that had built up between surgeries. Than over the week that I ended up in the hospital, it was slow for my bowels to wake. The worst part was the trapped gas and bloat. Things were so trapped that I ended up throwing up on Thursday night, off and on friday (surgery on Tuesday) and on Saturday. This was probably the worst part of it. It was jet fuel! Bile from hell. The doctor said that since I had so much gas trapped that my body had to let it out were ever it could. By end of Saturday I felt a bit better and the gas bloat was decreasing. I wasnt taken off my IV until Monday. I was started on foods (bland and soft) on Thursday and than due to getting sick Thursday night they took me off all food until Sunday evening. I walked and walked to move all that gas and still had issues. So it is a case by case basis. I must say that Wednesday was a good day mentally. I was happy and alert. Such a change from first surgery where I was out of it for like the first three days. I personally think the second surgery was a lot easier mentally than the first even the coming home to little people. I cried and cried for weeks before,during and after the first. The second I cried due to all the gas/bloat/throw up issues. I cried after the first call with my children when it was clear that I wasnt coming home on Friday. We had told our three year old it would just be a few days. It took a week. But all in all it was much better. Now, now I am still sore but I am able to do more at week 2.5 than I did for the first. Still no lifting of kids for eight weeks and well that just SUCKS but like I said it is not as emotionally draining as it was the first time when it came to mothering post surgery. The butt burn sucks but it does get better quick. I am taking it really easy with foods and just letting my pouch learn how to do it’s new thing. ML

    [Reply]

  161. avatar

    James says:

    February 28th, 2010 at 7:39 pm

    Hey everybody,

    I’ve had UC for 5 years now and I’m considering surgery in the next 2 months. My surgeon wants to do a 1 step takedown. What do you all recommend. I’m in Hawaii where UC is not common. My surgeon is board certified, has one the connelly award for 2009 and sounds extremely confident in doing the surgery though he says he only gets 2-3 surgeries a year. He has been a surgeon for 29 years. So I’m really debating on this. Should I do a 1 step or opt for a 2 step surgery? I would appreciate the advice.

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    Michael R Reply:

    Everything I’ve read, and from what I was told by my surgeon when I went in for consult, says that the risk of complications increases significantly if you do it as a one step surgery. Maybe someone else can back me up with actual figures. I thought about doing the 1 step because I’m impatient and didn’t want to deal with 2 surgeries, but my surgeon convinced me it was best.

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    ML Reply:

    I interviewed three surgeons and I too wanted it done quick. NONE of them would do it in one step. They said that it was too risky especially for failure of the pouch. It should also depend on your health status at the time. I was in remission for over three years and had to have the surgery due to pre cancer NOT UC. So my body was not combating UC which can make recovery time or surgery difficult. I would by all means get a second opinion just for your own piece of mind 2-3 surgeries per year would make me question a bit personally. Hope that helps. ML

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    J Haas Reply:

    I was diagnosed with dysplasia and opted to have the surgery. I was having limited to no issues with my UC and was only taking Asacol for medications. The surgeons I met were saying I was one of the healthiest subjects to elect to have the surgery, but they still would not recommend or do a one step. I still had complications after both surgeries (even being a “healthy subject”) and am thankful I had two, as I think it would have been even worse if I had a one step. I also didn’t mind having the temporary ileo and adjusted quickly. Getting a 2nd opinion I also think is a must. Maybe ask why he prefers doing 1 step instead of 2 as well.

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    Mark Reply:

    The first thing is that your instinct is putting up red flags and you are asking a very good question. In my situation I saw 3 GI’s and 2 surgeons before picking mine. I wasn’t able to find someone I trusted in my state, so I ended up going to another state for my surgery to get the best colorectal surgeon I could find on the west coast. This was 8 hours from my home, but I wanted the best because I had been told the surgeon’s skill can make or break your health after this journey. Now, things I would consider if I was in your shoes (1) Only go to an experienced colorectal surgeon, DO NOT use a general surgeon. (2) Most UC people get the 2 or 3 step because they are too sick to handle the one step, or years of steriod use has made their body slower at healing, hence needing two or three steps. (3) Can the surgeon do it laproscopically? Because lapro heals much faster and easier than open, most UC don’t need open because even though we are sick we are not so sick. (4) I was told by GI’s to pick a colorectal surgeon that routinely did the jpouch surgery and had a couple hundred under their belt. (5) Please post your question over at http://www.jpouch.org discussion board so you can get feedback there too, I think it is imperative you really consider this before agreeing to using this surgeon. This is your future and you deserve the best. Remember, at the end of the day surgeons are just people, but you want the person MOST well versed and experienced in this major surgery – this is your future health. If you do go with this surgeon you must talk with patients of his that had the surgery, ask for happy and unhappy patients so you can really weigh this.

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    Jacyln Reply:

    I would come to the mainland and have a 2 or 3 step with a surgeon who does this procedure all the time. My surgeon does 100s a year… Good luck with your choice. It is most important to do your homework!

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    Rachel Reply:

    I agree – it’s a red flag to me that (1) he would let you do it one step and (2) that he’s only done this surgery a handful of times per year. You NEED to get someone who is a rock star at doing this surgery and does it often. I went out of state to Mayo Clinic in Minnesota to have mine done, and I’m leaving tomorrow to go back there for my takedown this week. It’s such a serious surgery; shop around on this one because your health really is in your hands more than we tend to think. For the record, if you choose to go to Mayo, it doesn’t have to be crazy expensive. My insurance covered all but $300 of it. So for a $30K surgery, we paid $300. Not too bad.

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  162. avatar

    Jackie Z. says:

    March 1st, 2010 at 2:16 pm

    Rachel you’re really lucky! There are a lot of us who don’t have insurance quite that good!

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    Rachel Reply:

    Agreed – but to be fair, we’re paying out the nose for our insurance since my husband is self-employed.

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    ML Reply:

    I just think it is amazing that you were able to be covered by private insurance. I remember trying to get a policy over 8 years ago and was told it would never happen. When I met and married my husband it was understood that he would always need to have excellent insurance. I am so happy that this has all worked out for you! Blessings on your surgery and recovery. I’ll be praying for you.

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    Rachel Reply:

    We got our insurance before I was dx with UC, and I’m grateful that was the case.

    Thanks, ML, for your encouragement and prayers! :)

  163. avatar

    Rachel says:

    March 1st, 2010 at 6:03 pm

    My husband had no choice in whether or not to have surgery…..he was so ill and having such a horrible flare up that he could not reverse that we had to take drastic measures quickly. His surgeon, one of the men who had a hand in pioneering the procedure, felt very strongly about doing a 2 or 3 step process instead of 1. He felt like the overall recovery was better if you give the j-pouch time to heal between creating it and using it. Lucky for us we live just an hour south of the Cleveland Clinic and were able to take ful advantage of the incredible surgeons who do only colorectal surgeries like this every day.

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  164. avatar

    Teri says:

    March 3rd, 2010 at 9:02 am

    My daughter (19) had her takedown surgery done at the Mayo clinic just 2 months ago. Mostly she’s doing well, but she’s very frustrated by the leaking at night and the inconsistency of her bowel movements. Some are very liquid which are harder to control. We’d like to know if others experienced these problems and had improvement over time or will she likely have these issues forever? The doctors give a very standard reply of “everyone’s different”. She has tried metamucil and immodium which helps some but have not really stopped the night time leaking. Did anyone else experience this at the beginning and improve over time? Thanks for any replies.

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    Terry Reply:

    Teri, at 10 months since take down, I have those same problems but it is improving. No accident last night. But often 1 – 2 nightly. I cringe at wearing Depends but they keep the bed clean so I do that. I take Loperamide from Costco which is the same as Immodium but much cheaper. At my surgeon’s suggestion, I exceed the package recommended dosage – 2 every 4 hours and 3 before bedtime and 3 again 4 – 5 hours later. I keep a tally sheet in the bathroom and the BM’s per 24 hours are declining to about 6 to 8. I’m 63, so take that into account…I imagine it takes me longer to heal than for a 19-year old. But as her docs said, we’re all different. Mine say the same thing. Good luck to your daughter – I’m sure she will see improvement over time. Other than the bowel fuss, I feel great. Terry

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    Emily Reply:

    Teri, thank you for bringing up the topic of night leakage. I had my takedown 7 months ago and was very surprised when it happened to me (I am 30). I knew it was a possibility but I wasn’t quite ready for it to actually happen. I find now that night problems happen rarely now as time has passed. Things that worked for me were staying away from greasy foods, not too much dairy throughout the day and eating a lighter dinner earlier inthe evening. Benefiber seems to work best for me during the day and I also take lomotial before bed. I find that sometimes the night issues happen when I am really tired and sleep deeper than usual; preventing me from getting up to go. I think that things will get better as the pouch gets adjusted and our bodies recover from the shock of this whole surgery. See if any of these things help your daughter; I’ll be thinking positive thoughts!

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  165. avatar

    ML says:

    March 4th, 2010 at 8:22 pm

    blockage. Anyone have one after take down? I am in the worst pain right now in my stomach and where the bump still is up near my past stoma site. The doctor said it would take time for the bump to go down. I am in the recliner with a heating pad on my tummy and well I am worried I have a blockage but I have been going. Almost more than normal, but what is normal really in the early weeks post take down.

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    Megan Reply:

    ML – Yes, Mark has had Jpouch blockages. His begin with a stomach ache, thinks he ate something bad (not realizing it is blockage yet), he then notices he hasn’t BM in 5 hours or so, then he starts to feel sick like the flu, body aches, he gets weaker, he starts to vomit then either the blockages breaks by itself or he needs hospital. He always drinks hot water, no food, lots of hot shower/baths, he moves around his hips on all fours. But if you are going BM then it may not be a blockage it may just be your pouch adjusting.

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    Emily Reply:

    ML- I too had a lot of discomfort around the stoma area post takedown. It was tender to the touch and had a slight bump for a good two months after takedown. I thought I was working on a hernia or something because I picked up my 3 year old too soon (you understand that!) but the doctors told me it was probably scar tissue since I wasn’t having any other symptoms. Hope you are feeling better…so glad this whole journey is over for you!

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    Jacyln says:

    March 5th, 2010 at 8:22 am

    I have had this hot bath and massaging the area helps

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    Joe says:

    March 5th, 2010 at 6:26 pm

    My take down surgery was January 26th. I am eating normally, but I am not gaining weight. What is your experience on weight gain after take down. Thanks for your input.

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    Mark Reply:

    Joe, I’m a slight guy so my weight gain wasn’t very much but over about a year and half after takedown, I had gained about 10 pounds. http://www.jpouch.net/photos/surgery-1/ If you follow some of my photos from pre-surgery through my 9-month after takedown update you can see I was gaining some weight. But it took time to gain the weight and I didn’t do anything special other than I had more of an appetite now that I didn’t have UC, but I did have to get used to eating more and feeling good eating more. I think you should just give your body time to adjust and you will likely see weight gain in the next couple months as your body adjusts to all the changes.

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    Joe says:

    March 6th, 2010 at 2:10 pm

    Thanks for your input. I find I am eating well but I also have that urge to empty my pouch. It seems it is always loose stool. Does this continue for awhile. I was hoping it would be better that UC, but right now it feels like UC.

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    ML Reply:

    I feel your pain. I had my take down on 2/9/10 and although I was no dealing with UC prior to surgery the doctors were right I would feel like I was sick with my UC all over again by constantly being in the bathroom. It has been upsetting but I BELIEVE it will get better. The urge is strong at later parts of the day for me. It’s like a double witching hour in my home because my kids are at their worst…dinner/bedtime hour…ugh and then my bowel say’s “hey look what I can do!” It’s no fun right now. best wishes.

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    Joe Reply:

    Hello ML, I see you had your surgery 1 week after my take down surgery. I am presently having 12-15 BMs per day. I also have a sense of urgency. I am just curious, what is your experience so far? Are you feeling better? Are you taking imodium and/or metamuci? I would appreciate your feedback>

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    Mark Reply:

    Joe, Oh yeah, the first few weeks definitely felt like having UC all over again. In fact, I wrote just that in my photo journal from that time that it felt like UC http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/ . All I can say is that now 2 years out I have NO memory of UC, I love my jpouch, my life is totally normal. I have about 6-8 BMs a day with no urgency. So I do go a lot but it isn’t bad at all, I have no pain and I have complete control. Hang in there Joe, it will settle down with healing. Feel free to contact me if you need anything mdhilton@gmail.com

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    Joe Reply:

    Hello Mark,

    Thanks for your response. I can’t tell yuo how much your input means to me. When I feel there is no hope, this board gives me hope to look forward. Thanks again.

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  169. avatar

    Rachel says:

    March 7th, 2010 at 8:19 am

    Hey gang! Got discharged last night from the hospital for my takedown surgery. I CANNOT believe how drastically different an experience this was this time around, compared to the first surgery. So far, things are ok. Calmoseptine is my new bestie, and I’m thinking that my jpouch is kinda like a new baby – sleeping all day long, and awake all night. I got a little frustrated last night during my 3rd (out of 4) trip to the bathroom, and it did feel very reminiscent of UC, but man, is it good to be rid of that bag!

    I am having some leakage issues, and that’s no fun. Is it bad that I’m actually considering getting a box of Depends??? :)

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    Terry Reply:

    Rachel, I use Depends and they help keep the bedding clean. I wear underpants over them to make me feel more normal in front of my wife. She could care but it bothers me to be seen with the Depends on. If your problem continues, you might ask your surgeon about Cholestyramine powder. It was initially developed to deal with cholesterol, hence the name. I have had just two doses (started yesterday) so I can’t speak to its effectiveness but the pharmacist was glad to see the prescription, saying it seems to work. Good luck to you.

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  170. avatar

    Michael R says:

    March 7th, 2010 at 6:05 pm

    I’m set to go in Thursday morning for my first surgery. Does anyone have any tips on what to pack? I’m sure I’ll be in a hospital gown for a few days, so I’m not sure what clothes to pack and how much. Any tips or suggestions of things people wish they’d brought would be appreciated.

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    ML Reply:

    For the first surgery I would say take some comfy clothes to get into after the gown stage because let’s face it those gowns are just so lovely you wont want to mess it up. Ha. Also I would say some long sleeves because I found the hospital to be cold when taking my walks. I took a robe and it was useful for after showers because I was so tired after just taking a shower that just toweling off and getting into my nice fluffy robe meant rest and comfort. I would say slippers, chap stick and a few pillows from home. Hospital pillows just aren’t the greatest so a few from home are nice. If you are blogging or tweeting your story than take your laptop or phone. Granted someone else will be doing that for you the first few days but I was happy to have my “connection” to the outside world because I was in the big house for 10, yes 10 days from my first surgery. NOW that is not the norm so I dont say that to scare you but pack a book or the item you might need to distract you for the longer stay should you need it. That’s all I got. Best wishes for a successful surgery and a great recovery. ML

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    Megan Reply:

    Yeah, the main things are a soft thin robe you can easily slide on and off for walks down the hall – don’t take a bulky robe, a thin robe is key. Slippers for your walks. You can see Mark here http://www.jpouch.net/photos/surgery-1/ You won’t be in clothes until your catherder is gone and that could in 3-5 days depending so don’t get too excited about which clothes to take, but do buy some low slung thin pants to wear once you are catheder free. Mark travelled light and anything he needed I could easily bring to him.

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    Cynthia C. Reply:

    Hi Michael,

    I just had my surgery done in late January 2010. I suggest slippers, because even though they give you socks, it’s kinda gross to get back in bed after you’ve been walking around in them. An ipod is also something you may want bring. I also suggest magazines. I was so drugged on pain meds i couldn’t even read, so magazines at least provided pictures to look at. I also recommend asking for movies. It makes the time go by so much faster. I agree with not bringing too many clothes. You really only need the clothes you came in, since you really arent in them for that long at all. you will most likely be bed ridden for a few days, so there’s really no need for clothes, except maybe underware. wear sweat pants. you won’t be able to wear anything else because of soreness.
    I wish you the best of luck in your surgery. It wasn’t as bad as I imagined! I hope your recovery is swift!!

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    Terry Reply:

    Michael, these folks nailed it right on. Travel light…the rooms aren’t that big in any hospital. I brought my Blackberry instead of laptop and was able to communcate with my friends that way, as well as keep up with the news, sports scores etc.

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  171. avatar

    Colin says:

    March 11th, 2010 at 11:00 am

    Hey guys, had a rough morning today. I woke up with my bag totally inflated and hard as a rock from gas/poo (as usual…that’s nothing new), but today the poo actually managed to break the seal on the bag and come out all over. It was kind cruddy for awhile to clean everything up, but I’m over all that. Really, it’s been 4 months and this is the first time this has happened, so it’s not the end of the world. What I’m trying to figure out, however, is how to make sure that never happens again. People who’ve been through the bag waiting period, did you ever have this problem and what did you do to guard against it?

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    Mark Reply:

    Sorry, sounds not fun. I had a couple temp ileo bag issues, but I just dealt with them and waited till jpouch. Yours just sounds like you slept too hard (a blessing though if you think about the fact you were sleeping enough to fill your bag), and the bag got too full. I think I’d take the blowout any day if I meant a good nights sleep. All those years of UC and not good sleep.

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  172. avatar

    Terry says:

    March 11th, 2010 at 12:56 pm

    Colin, that happened to me as well. Do you have a stoma nurse? Mine was covered by my insurance. The nurse provided me very good coaching and advice on different products. Her mantra was “You don’t want poo in your shoe!” Do you “bleed” off excess gas when you see it in your bag? Also, there are bags available that have gas removal strips. I think I got mine from Coloplast. That company is also good with advice and sent me samples to experiment with. I also set my alarm for a 2-hour wake up, and I would check the bag and empty it if needed. For me, sleep deprivation was better than accidents. I still set the clock for 4-hour wake up with the j-pouch because I’ve had accidents while sleeping. Good luck to you, and “this too shall pass.” (I mean the bag, not the poo…” Terry

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  173. avatar

    Taylor says:

    March 14th, 2010 at 6:37 pm

    Hey guys! I am 6 weeks post surgery #1 and suppose to get back to work tomorrow. But all the sudden this weekend my bags won’t stick at all. I have gone through at least 14 and my skin has had it. I was thinking about using a non-adhesive bag till it heals. Any suggestions or feedback on them? I can’t find any online. Thanks for your help!

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    Tim R Reply:

    Taylor,

    Nu-hope makes one.
    http://www.nu-hope.com/

    I have not tried it, so I cannot vouch for its effectiveness.

    Good Luck
    -Tim

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    Daniel Reply:

    I use Nu-hope, and they absolutely saved me!!!

    I tried Hollister and Convatec, but they chapped my skin. Nu-hope are the only bags I tried that feel like I am not wearing anything.

    The struggle with Nu-hope is that they are a small company, so ordering supplies can be tricky (slow). Order some samples, or ask your ostomy nurse.

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    Tim R Reply:

    forgot…
    I had a period when the bags were not sticking well and here is what worked for me. 1) Shower with the bag off and gently wash the peristomal skin. 2) Use adhesive remover and a barrier wipe. I called all three manufacturers convatec, holister and coloplast and asked for free samples. All three sent them. You can ask for specific items that you want to try out. I asked for different style bags and convatec sent out the adhesive remover and barrier wipe without asking. The barrier wipe is like a moist-towellette only it has glue on it. If you call within 90 days of your stoma surgery 2 of them have welcome kits that they send out that include a bag to carry your supplies in case of emergencies (leave in your glove box or whatever).

    Of course now you are on their mailing/calling list but the stuff is free.

    I totally agree with Terry. Find a wound ostomy nurse. I saw one at the hospital post surgery and she ROCKS. She knows how to fix anything about the stupid stoma and she is kind of funny too. For the life of me I cannot figure out why she does what she does, but I am certainly happy to have her.

    story…. So in an earlier post I said that I was in the ER for a night with a high temp. While I was there they were doing all kinds of tests to be sure that my fever was not due to an infection related to the surgery (abscess), contrast ct scan among them. When you have one of those you have to drink a liter or more of fluid. It was the middle of the night, I was scared, anxious, nervous and tired. Still, don’t ask me how, I would occasionally doze off… not a great idea with an ostomy pouch and a liter of liquid. I wake up in a puddle (not yet the whole liter) and have to get my nurses attention (no one told me there was a call button).
    ‘Hi Miss, I have a slight problem…’
    ‘ok what do you need?’
    ‘a basin and some supplies’
    ‘ok be right back.’

    She came back with a 2 piece ileostomy bag. Good enough so far….wait a minute this is an open ended bag not the velcro closure I am used to and there was no clip.
    ‘Sorry that was all there was in the supply closet. We don’t usually deal with ostomy patients, hang on…’
    She returned with a rubber band and 4 paperclips (are you kidding me!!!! already seeing myself puncture the bag with the paperclip)
    DIY time.
    I had emailed the Wound Ostomy Nurse earlier in the week. So I had here email address on my blackberry and I emailed here from the ER asking here to bring the appropriate supplies for me. No Lie she was there in 15 minutes. Laughing hysterically that I emailed her from the blackberry in the ER about this. Anyway she is one of my favorite caregivers in this whole experience and has been a tremendous help.
    -Tim

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    Taylor Reply:

    Thanks guys! I found an amazing ostomy nurse who told me to shut up and listen! she was great and it really helped. I think I needed to come to grips with my bag and that it is part of my life at least 3 months and then I could move forward. I keep calling it my come to Jesus moment where he slapped me on the head and I got over it. It was weird once I was okay with the bag it stuck. 

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  174. avatar

    Terry says:

    March 15th, 2010 at 7:18 am

    What kind of adhesive paste are you using? Also, there is a bag that goes with a belt which won’t guarantee anything but it helps…along with adhesive paste. It really helped me. I wonder if the shape of your stoma has changed and you need to be cutting a different hole size. My best suggesttion is to find a stoma nurse (I think the correct term is “wound ostomy nurse” for some expert guidance. Good luck!! Terry

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    Taylor Reply:

    Thanks! 

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  175. avatar

    Michael W says:

    March 15th, 2010 at 2:51 pm

    Hi all, I suffered from UC for about four years. I was diagnosed at 16 and am now 19… so I suffered enough, I know many of you have gone through a lot more than I have. I was hospitalized for a few times, tried numerous medications. Breakfast, lunch and dinner could have only consisted of pills… I barely ate anything because anything and everything would upset my colon. I tried a few biologic meds as well, Remicade and Cimzia… neither did the trick for me, I played tennis in high school and got a scholarship to play in college. So I played my first semester last fall however, I just could not seem to get better throughout the three/four years. I was on prednisone that whole time as well and that was good and bad as you all know. So two weeks ago after reading on here a lot and talking to my doctors I decided to go the j pouch route. It was supposed to be a two step surgery, however because of being on prednisone for numerous years it is going to take three surgeries instead :/ which is good and bad I guess??? I took off this semester, and am really worried how behind I am going to be with school. So getting used to having a stoma is a bit weird for now, I was only in the hospital for 4 days. I am excited to be able to eat again and not worry about looking for a bathroom wherever I go. The stoma is not too bad really, I thought it was going to be way worse. The only thing I am scared about is going out in public, I have not been out once yet. I am just really nervous. I am also scared about having the take down part of the surgeries… I don’t know if I want to go back to all the UC nonsense again… I know it will work out in the end but that just seems like a rough way to get better… I had such a bad experience with UC, I don’t know if I can do that again…

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  176. avatar

    Cynthia C. says:

    March 15th, 2010 at 3:18 pm

    hey michael,
    thanks for sharing your story with everyone. it’s funny how all our stories have so many parts that are so familiar. i understand how you feel worried about going out in public. my first event was to go see Avatar. i had to go empty my bag of course half way through a three hour movie. my hands were shaking! i was so nervous and i can’t even explain why. i couldn’t believe i was in this new situation, i guess. i felt like crying. one thing i can tell you though, is not to worry too much about your bag exploding or leaking ect. if you empty it out often, and check the seal, you should be fine. and no one even knows your wearing it. make sure you bring extra supplies, just in case though. don’t leave home without it. i feel like you do about the j pouch experience. i’m not sure if i want to go through a colitis “feeling” again. i chose a permanent illiostomy, with a choice to go back later for the jpouch surgery. at first the bag was so strange, but now i’m pretty used to it and SOOOO happy i don’t have colitis anymore. right now i can’t even imagine having another surgery and going though a recovery process. but who knows after summer is over with i may wish this bag away!! i wish you the best of luck and be brave! Don’t worry about going out in public, just be prepared and go for it!!
    Best, cindy

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  177. avatar

    Michael W says:

    March 16th, 2010 at 4:25 pm

    Haha I know, I left out quite a bit… but I gave enough to have a lot of things in common with quite a few people on here. Thanks for replying though, I really need to see that movie, everyone I have talked to said it was amazing. You must have had your surgery pretty recently then, when did you have yours? I’m ready to go out, I think I am going to tomorrow to watch my old high school team practice tennis… So that should be nice. All I can say is that I am ready to play tennis again, it has only been two weeks but I feel fine for the most part. I know I won’t be playing too soon, but I wonder when I would be able to. How often do you have to empty your bag out daily? On the surgery aspect… I am going to have the bag for probably around 4-6 months or so I guess. I am getting used to it already, and like you said, it was so weird at first. But it is starting to feel like a part of me now. I don’t think I would like it long term but I feel like I would almost rather have it than have to still go to the bathroom around 6-10 times a day whenever I would recover from my third surgery. I know I have some time to think, but I don’t know what I should do. Taking barely no meds no feels amazing, and so does being off of prednisone. What made you have the surgery?
    Talk to ya soon, Michael

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  178. avatar

    Cynthia C. says:

    March 17th, 2010 at 9:45 am

    hi michael,
    i had my surgery on january 26th, so not too long ago. this is the first week i really, really feel good. i have my energy back and can even sleep on my sides! i was starting to feel good about a month after surgery, but then i got an infection around the stoma, they think from the stiches. wow, was that painful!! i went on an antibiotic, but only for a week. i know what you mean about being off all meds. it’s so awesome! but the best is being off prednisone. that stuff is the devil! my hair is still falling out from it. luckily my hair is thick! i think i may have caused the infection i got because i tried to do too much after surgery. i think the hole around my stoma from the bag was rubbing against the area where the stitches were. so, just be careful playing tennis too early. maybe cut the hole a little bigger so it doesn’t rub when you move. i’m hoping to start playing volleyball pick up again, but i think it may be a while. i lost so much weight and strength, i probably should go to the gym before i start playing! i definitely recommend Avatar! it’s really amazing! to answer your question, i have to empty my bag around five to six times a day. and i also have to wake up once in the night. from what i have read on this site, it seems like in the beginning after the second surgery, recovery is pretty long. recovery meaning how often you have to go to the bathroom. a lot of people say in the beginning it’s like having colitis again! but i guess after it’s pretty awesome to go like a normal person. i don’t mind the bag yet, but maybe in time i will. it’s good you have time to recover and think about everything. i had my surgery because of ulcerative colitis. i was diagnosed in october 2009 and my health just plummeted from there. none of the meds worked for me, in fact they made me extremely ill. i think it was a blessing in disguise though, because now i feel so GREAT and i’m med free! i’m so glad i don’t have to take medicine for the rest of my life. i wrote my story somewhere on this message board.
    well good luck on your first day out! and remember to bring extra supplies!
    cindy

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  179. avatar

    Kristine says:

    March 17th, 2010 at 7:58 pm

    Hello Everyone,
    I’m actively taking notes from all the info here to prepare for my step 2 (of 2) surgery on the 24th. I’ve been anticipating this surgery will take away the bag and I’ll be able to wear pants w/o an expandable waistband very soon! I wish my partner shared my positive thinking. He has taken a stance to remind me I shouldn’t hex the bag yet, because it is not gone and the step 2 isn’t over. I agree I’m not homefree. But I have not heard any stories of a j-pouchers going in for the step 2 and beign told it couldn’t be done. Anyone care to share a horror story to knock me back down? :) I’m laughing inside (really) I have only 2 ostomy bags left & I don;t want to re order “just in case.” But, if I’m looking at this wrong, please someone step up to be real with me. THANKS!- Kristine

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    Daniel Reply:

    Kristine,

    The only thing to worry about that I am aware of is the pouch-o-gram. That could push the surgery out a few more months. I haven’t read of too many failures, so you have little to worry about.

    I have mine scheduled next month (can’t wait). I still have no idea where they will inject for the imaging…any thoughts board.

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    ML Reply:

    When mine was done they inserted a balloon into the distal portion of the stoma (the portion that is at rest now) then once the balloon was in they start a filling up your pouch with a dye. If there are no leaks than surgery goes on as planned. It is kinda uncomfortable as you haven’t had anything down there in a while but not painful. When they insert the dye you will feel kinda like you have gas. Then the fluid comes out like if you had to poop. It was very cool to watch it all on the monitor.

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    ML Reply:

    Kristine, If it has been planned that you will have only two steps and it was clear after surgery that there would only be two steps than the only thing holding you back is if the pouch isnt ready. You’ll know that prior to surgery. Some people have to have a three step surgery but knowing what surgeries you are going to have or what happened after step one should be very clear either prior to or after the first one. At least that was my experience from my surgeon. He was very clear with what was happening and why. He set my expectations very well of what would happen when and stood firm even when I tried to talk him into doing my second surgery prior to week 12 because I felt so great at post surgery one week 10. I would say if you are a week out and have two bags than you should be fine minus any leaks etc that might come up. My pouch test was done at 10.5 weeks post surgery so I knew just how many bags I needed to have on hand for the remainder of time. I was also lucky that I didnt have any bag mishaps. Best wishes, ML

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    Kristine Reply:

    ML or anyone – did you fast before the procedure for the pouch-o-gram? I understand they take off your bag? So it sounds possible that we’d be having some output during the procedure & no bag to catch it in. I’m going to assume it’s like changing the bag – you’d use a guaze or something to cover the top opening. But I am curious -how did that work for others? I know I’m having a two step surgery & I’ve had 8 months for the pouch inside to heal so I’m pretty positive we’ve got this pouch sewn up right. :)

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    ML Reply:

    I dont remember them telling me to fast but I know mine was around 10am. I choose not to eat and just took in a little bit of water. They do take off the pouch but my seal was not broken. I had a two part system. It is normal to feel like “what if I….” but they have seen it all before. They were very kind to me. But I didn’t have any issues. You do get into a gown so I didn’t worry about getting my clothes all gross. Also I would just make sure like always to bring a change of supplies just in case. I would for sure make sure you had a clean pouch on that day as well. My bag change just happened to be the morning of so It was as clean as a whistle. It goes by so quick too.

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    Rachel Reply:

    Kristine, mine was a little bit different from ML’s. I laid on a seemingly-regular Xray table, on my left side, in the fetal position. They left my bag on, and then inserted an enema and taped it in place. Then the xray tech/doctor came in and had me move in various positions, all while running the barium enema. It was slightly uncomfortable. You can definitely feel the amount of liquid in your pouch. I didn’t really feel anything pass into the bag until it was all over and I stood up and whoah. It was full! So then they had me run into the bathroom and empty the bag and go to the bathroom to empty out any of the solution. All in all, it took maybe 10 minutes?

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    Kristine Reply:

    Rachel, my pouch o gram was alot like yours. Surprised me how quick and painless it was!

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    Megan Reply:

    Kristine, in our 3 years of being online jpouch related we haven’t encountered anyone who went in for step 2 and came out with the bag still due to unexpected complications. The surgeons just tell everyone that to cover themselves in case something unexpected were to occur. But in reality they would know long before step 2 if you weren’t a jpouch candidate. This is not something you should worry about.

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    Kristine Reply:

    HI everyone-
    I have no bag! Step 2 of 2 completed as scheduled. I am extremely tired, can’t eat, and dehydration is creeping up on me. So I will browse the site and see what you others have done. I’ve taken tiny bites of all different comfort foods, but, nothing substantial. My pain meds are soaking in my stomach acids and I really hopo to find some advice on starter foods here. Or I fear throwing up will return soon.

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    Terry Reply:

    Kristine, congrats on ditching the bag! I found that very small portions of starchy foods (rice, noodles, potatoes, toast, crackers) worked well for me. After my surgery, I didn’t like water but it’s criticial to keep taking in fluids. My wife put a tiny bit of lemon juice in with my water and I liked it better. I’m now fine without the lemon juice & drink a lot of water. You may find that once day soon, something will just snap and you’ll be feeling a LOT better. After surgery 1, it took me 6 weeks, something less after the next surgery and with my 3rd one, I felt so good, I got out of the hospital in 2 days. We’re all different, so be patient with yourself. Terry

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    Terry says:

    March 17th, 2010 at 8:16 pm

    Kristine, not a horror story but I’d hoped for a 2-step but the surgeon decided to go to a 3 step, so while I had hoped to be rid of the bag in January 09, I had step 2, then waited until May 09 to have the bag removed. I was disappointed but it wasn’t the end of the world either. I take life as it comes, so I roll with the punches. I mention this in case you have to go to a third step. But good luck to you on the 24th. Sounds like you and your husband have good attitudes…that really helps! Terry

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  181. avatar

    Colin says:

    March 18th, 2010 at 10:35 am

    Quick question. This is only a problem that’s popped up in the last few days, but has anyone with a bag ever woke up to a crazy gas smell in the morning? I use the bags with a filter on them and I really don’t encounter this problem at any other time in the day. But recently, I’ve been woken up to a just nutso gas smell. I’ve checked all around the bag and seals seem super-tight, so I’m wondering if there’s just so much gas in there from the night that it overwhelms the filter. Has anyone else encountered this problem?

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    Terry Reply:

    Colin, that happened to me occasionally and I figured it had to do with I’d eaten. I have my j-pouch now but I recall that when I ate less meat, garlic, etc, there was less odor. That’s still the case with my output via the j-pouch. But it is less than before the surgery. I guess the food not sitting there as long reduces the odor. I think your analysis is correct—about the bag being overwhelmed at night. If I had to get up in the night to pee, I’d also open up the bag just a bit to bleed off any excess gas. Terry

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  182. avatar

    Michael R says:

    March 18th, 2010 at 7:30 pm

    Thanks for the tips on what to bring. I’m back from the hospital and am not amused by how tired i get doing the simplest tasks.

    Does anyone have any recommendations for a brand of bags that is more solid or holds its shape better? I find my bag sagging all over the place and bulging out from under my shirt. Is there a way to get it to hold it’s form better?

    Also, does anybody else have one bag very loose/liquid and the next rather solid? Seems like my ostomy empties alternate between the two and I’m not sure if it’s diet related. I need to work on the eating smaller meals more often. Doctor has me on diatropine to slow my bowels.

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    Megan Reply:

    Yeah, the surgery is a shock to the body so fatigue goes with the recovery process for sure. Just respect what your body is asking for, if body says it is tired after making a sandwich then let it rest. Mark used Convetex and those worked fine for him for the 3 months he had his temp ileo. I think he was so happy to be free of UC that he never put much thought into the maintenance of the bag. But his bags fit under his clothes fine. Have you looking into a phoenix belt? Mark got one but he didn’t use it much b/c he didn’t feel he needed to trap his bag in http://www.jpouch.net/photos/surgery-2-inbetween-surgeries/ And yes, his BMs with the temp ileo and the jpouch constantly fluctuate between more liquid to semi-solid. It all depends on if he takes maintenance meds like immodium and fiber, and of course what he eats.

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    Michael R Reply:

    I saw the part about the phoenix belt. I can’t find a place locally that has it in store, you have to order. I’m a weird waist size and wary of ordering items that need to fit over the internet or sight unseen. I guess I’ll have to do something, as my bag hangs rather loosely due to the position on my body.

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    Mark Reply:

    Yeah, you have to buy it online. I bought mine based on the size chart, then had to have it pulled in a few inches.

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    Michael R Reply:

    Perhaps you can help me on sizing then. I wear a 32″ waist pants. Should I order the small size belt 24-31in or medium 32-41? I’m right on the borderline, size wise, but don’t want to get something too small/large. Which size did you get?

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    Tim R Reply:

    Michael, I have a 30 inch waist (wear 30 pants), ordered the small and it barely fits. I would suggest with anything more than 30 that you order a medium. I think their sizing has changed recently also they are using snap closures now rather than velcro. I guess the snaps perform better over time. Overall I am pleased with it. It makes being in public a little easier (more confidence) and also allows the bag to function better as the waist band on most of my pants prevents the material from dropping to the bottom of the bag which then caused the bag to bulge at the top.
    -Tim
    -Tim

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    Michael R Reply:

    Thanks a lot Tim, that helps a ton.

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    Rachel Reply:

    Yeah, I had varying consistencies, even up to the end, right before my takedown. It may have something to do w/ what you’ve eaten. Don’t worry about the fatigue. It will pass, but I remember how frustrated I was with how exhausted I felt all the time. That recovery was rough; it probably took me 5-6 weeks to feel semi-normal. As far as what kind of bag to use, Hollister was my favorite.

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    Taylor Reply:

    I agree with Rachel it takes about 6 weeks to feel somewhat normal. Much longer then I thought and I finally found success with Hollister two piece. I learned that I like the smaller opening one it is easier to move around with. And I discovered just the regular little belt does help with some of the bag movement.

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  183. avatar

    Taylor says:

    March 28th, 2010 at 5:47 pm

    So I had surgery one on Feb.1st. I am the opposite of most UC patients and I gained tons of weight with UC no thanks to the large amounts of Prednisone I was on. Now that I am bagging it I have lost 30 pounds and seem to be loosing about 2-3 pounds a week. Is this normal? I mean I was glad to loose the 1st 25 but now I am worried. I swear I can’t keep hydrated either. I drink and drink and drink water and it shoots through. Anybody else  have these issues or good ideas. I struggled with UC for 8 years tried every drug ending with Remicaid. What a battle. I am happy with no colon. 

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    Michael R Reply:

    I’d ask my doctor about the weight loss if I were you. Sometimes I feel like I’m getting all the water I’m drinking and sometimes it seems like it runs right through to the bag. I found it helped to use metamucil along with the immodium to slow my digestive tract. My doctor never mentioned the fiber, it’s something I got from here, but it really helps.

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  184. avatar

    Tim R says:

    March 29th, 2010 at 10:54 am

    Taylor,
    My surgeon told me that now that I had the j-pouch ( I am currently at step 2/3 the next is take down) that I was much more prone to dehydration and that in order to keep properly hydrated I had to slow down and thicken the pouch output. To do this I should to take metamucil at breakfast and dinner and take 2 tabs of immodium 2 to 4 times per day. This is way beyond the recommended dosage but we are all ‘special’ now, nonetheless I would suggest you run it by your doctor. She also said to drink at least 64 oz of fluid and for much of that to be electrolyte such as gatorade or smartwater.

    Some foods thicken the output as well: mashed potatoes (no skins-they can cause blockages), soft cheeses, yogurt, bagels, rice, pretzels, bananas, tapioca pudding, pasta peanut butter. You might try some of these.

    You can get gatorade, propel, sobe lifewater and other electrolytes by the case at BJs or Costco(but don’t lift them yourself) and at Costco you can get the Kirkland brand of immodium (loprimide) (you can lift that ;-)) for super cheap. I think Mark or Megan mentioned that in another post. There are also places online that you can order bulk single serving envelopes of powdered electrolyte. These are mostly supplement stores. I haven’t settled on one yet myself.
    I hope that helps!
    -Tim

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    Kanaka Reply:

    Tim,
    In step 2, you still have the bag right? if yes, then thickening the stool will back fire IMO. You need to start slowing the process, after the take down and not before.

    Email me at kanakab at hotmail.com if you have any questions.

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    Kanaka Reply:

    Oh, another thing. I was told, after the take down, not to drink Gatorade or any form of electrolyte there is no colon to absorb the electrolytes. Not sure why/what, but that’s what my surgeon told me. Just drink lots of water!

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    Taylor Reply:

    Thank you so much Tim!

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    Tim R Reply:

    As Kanaka suggests everyones situation is different, but here is a link to a set of dietary guidelines written be a dietitian

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  185. avatar

    Tim R says:

    March 29th, 2010 at 6:38 pm

    http://www.j-pouch.org/diet.html#anchor1925465

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    George Abu Jarur Reply:

    The most important is to have your fluids separate from the meals. Drink as much as you can from water between meals, before the meal by 30 minutes stop drinking any fluid, and after the meal by one hour drink as much water. That works with me very well, since my first operation in 1987 and second in 1989. Concerning Alcohol, the problem with alcohol, it is absorbed very quickly from the stomach and affecting the B12 and so affecting the nerves. After the first and second operation, I used to drink, but causing going to the bathroom so often, and sometimes would block the stoma if I drink when I was thirsty and tired. Now, I stopped drinking to maintain health. Something you need to be aware is the loss of sodium. Potassium is not the only concern from too much drainage, Sodium is important as well.
    Eat your meals dry without any fluids, and take the fluids between meals. That is the magic rule that help my children patients to have a solid stool and avoid malnutrition/
    You need to discover by yourself what is better for you.
    After the first operation< boiled and baked potatoes worked very well with me with the apples. Now I am eating, all vegetables, even fresh garlic and onion and cabbages. Cabbages is working very well with me. The only fruits that irritates my bowl is the citrus fruits. I depends more on dried fruits, dates, figs, raisins and apricots.
    For Arab World, this is something you can't talk about, but I am starting to write my story in Arabic. I am still in the beginning, but I am trying to educate the others about healthy lifestyle and nutrition.
    I found your blog by accidents, I wish you luck.
    Thanks

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    Terry McCall Reply:

    George, your posting is very interesting. Ten months after my j-pouch being installed, I still have problems with night-time accidents. I will try the fluid regiment you suggest. I also find that citrus fruits don’t work well but I am amazed that you can handle cabbages and onions. I eat a peeled apple and a banana nearly every day. Also, I usually have 1-3 glasses of wine or 1-2 martinis near bed time. I hate to give that up but will give it a try as well. Good luck to you on your book. I imagine there are many who read only Arabic and who have had the operation(s) who would really be helped by such a book.
    Thank you. Terry

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    George Abu Jarur Reply:

    Terry, You don’t believe if I say my GI loves cabbages, and I eat it every day, either cooked or picked. I am lacto-ovo-vegetarian and I am happy with the diet I am eating. By the way, I have a Gurdner’s Syndrome, and I have polyps in my stomach. I refused to cut my stomach. They did experiment on me by taking high dose of Celebrex for six months and the polyps in my stomach almost vanished. But, I stopped Celebrex completely now and trying to control the polyps and any complications through a vegetarian diet that includes fresh garlic and onion. I almost eating garlic and onion every meal.
    Usually, with the Guardners syndrom, you start to have polyps in the rectum and the GI since 15 years old, but I discovered when I was 40 years and my colon was full of adenoma polyps.
    I saw many cases with diverticulosis and diverticulitis in Aramco hospital and I succeeded to manage their problem by diet only, and it can be managed easily by strict diet.
    Thank you

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    Taylor Reply:

    Thank you so much. I will try the drinking tricks!

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  186. avatar

    Jackie Z. says:

    March 31st, 2010 at 2:00 pm

    Hey All,
    Had my first of 3 surgeries on Thursday. Getting used to this stupid bag. Its a really long bag and I empty it at 1/3 full but it still seems to get really heavy and its so long that its really hard to conceal under my clothes.

    Has anyone used those smaller bags? Any draw back? Thanks.

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    Taylor Reply:

    I just use a binder clip and roll the bottom of my bag up to a better size. Plus it makes me not paranoid it will come open. 

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    Cynthia C. Reply:

    i had a few accidents with a smaller bag. you have to remember to empty it way more often and it seems like sitting down makes it have a tendency to break open from the side. but i was sampling a bag by the company Hollister, and everytime i used this company, something went wrong. good luck! i’m sure there are small bags that work great, you just have to find them!

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    Emily Reply:

    Hope the bag situation is working itself out! I, too, could not stand the long bags that would get heavy, I am on the shorter side and they would hit me in the leg. I went through Convatec and asked for the smallest 2 piece bag they had (next to the pediatric bag) with the “lock and roll” velcro bottom. I would wear the smaller ones out and keep the bigger ones for night. I never had a problem. They also had disposable two pieces where all you had to do was peel the bag off and click on a new one on the base (kind of like tupperware)! Those were handy too when out and about so you don’t have to worry about cleaning!

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  187. avatar

    tasha says:

    April 6th, 2010 at 8:09 am

    First time poster here – hello! I have severe constipation throughout my entire large intestine (3 wrong diagnoses, 2 colonoscopies, 2 CAT scans, anorectal manometry, Sitz marker test, Smart Pill, countless blood work, gluten-free diet, Amitiza, Miralax, laxatives, enemas, suppositories, probiotics, fiber pills, etc. etc.). I’m meeting with the colorectal surgeon tomorrow. I’ve read where people that are overweight have had not been able to get surgery laproscopically and so they cut you open with a large incision. Any opinions on this? Anyone with the constipation part interested in talking via email or AIM? Thanks!

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    James Reply:

    I will start with…though I’m not an expert to answer the surgery portion you may have a mid line incision, what they will do is make a cut either below or above the belly button down about 6 inches. From their they’ll be able to access your bowels. My sister has had this surgery before but she was diagnosed with u.c. over 10 years ago. I too have u.c. and will get the mid line incision come May. Sorry to hear of all your trials and tribulations. It sounds like some of things that I did like the gluten free diet, and probiotics, those things didn’t work as well but the best advice in my situation was guess and test. Definitely stay away from spicy foods, lactose, and alcohol. I looked into eating low density foods but in your case fiber might be a necessity. Goodluck and take care

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    tasha Reply:

    thanks for the response James!

    fiber – when in the form of pills causes so much discomfort that I have to take Promethazine.

    going in for a defacography, electromyogram, and pudental nerve study next.

    thanks again!

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  188. avatar

    Cynthia C. says:

    April 12th, 2010 at 2:37 pm

    Okay, my hair is falling out in clumps!!! HELP! i’ve been off prednisone for three months now, so i’m not sure if its some sort of after effect of that, or it’s from the stress of surgery as my ostomy nurse suggested. any one know what to do?? or why this is happening?
    thanks, cindy

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    Jackie Z. Reply:

    My hair fell out like crazy. It was terrifying. I could see it thinning visibly and i was afraid to brush and wash it. It was horrible. BUT it did eventually stop. I took biotin ( I dont know if it helped) and I also used a hair stimulator to try to stimulate regrowth. The hair dresser told me to wash it regularly and brush it, because that will get the dead hair out. The hair thats gonna fall is already out so you should remove it from your head to help new hair grow. It stopped for me after a few months, right when i was about to go to a wig store, but I didn’t have to. Hopefully you wont either!

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    Elizabeth Reply:

    I had this problem as well! My doctor said this is very common with all of the stress and that you should not worry..you will not go bald! I’m now 3 months from my surgery and my hair is not falling out as dramatically..I hardly notice it anymore.

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    Cynthia C. Reply:

    thanks for the comments! it’s reassuring to know that i’m not the only one, although i’m sad that it happened to you two as well. i’m just about ready to cut my hair really short! i can see the new hairs growing in, but will it get so bad that there will be patches?

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    Colleen Reply:

    I had most of my hair fall out too. I did end up cutting it really short because it was looking bad! Six months later I’m happy with the length and have a style I like and would otherwise never have tried. It’s not soo bad.

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    Elizabeth Reply:

    I didn’t have patches. Noone could really tell except me..every time I put my hand to my hair I’d pull out a big clump. My brush would fill with hair every time I brushed it. Yet I still had hair on my head! It is already thickening up again (almost 4 months now). It feels a lot worse to you then it really is.

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    Lisa Adam Reply:

    My hair has been falling out too! I don’t feel like I’m going to be bald or have clumps missing but I can tell it’s A LOT more than usual. I’m pretty sure this is due to all the surgery stress and should subside after all the surgeries are done and if not, I guess I’ll be worrying about it when I do start missing clumps! Haha!

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    Cynthia C. Reply:

    well i finally decided to cut my hair. my stylist didn’t want to go as short as i wanted because she was afraid of my scalp showing through. but, i can’t stand the cut! my hair is still falling out. luckily it’s not in clumps. it’s crazy how our bodies react to stress.. GOOD LUCK TO EVERYONE WITH MISSING HAIR!

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  189. avatar

    Taylor says:

    April 13th, 2010 at 9:29 am

    Okay I know I have seen it on here but I am having trouble finding it. Can anyone tell me what the prep is like for takedown surgery? I am having 2 surgeries and 1 is done and 2 is tentatively set for May 18th and I am debating a weekend trip before but have no idea what the prep is and won’t until May 6th. Thanks!

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    Emily Reply:

    Hi Taylor, Prep for the second surgery was simply nothing to eat or drink the night before (for a morning surgery) and I would assume 8-10 hours before an afternoon surgery. Piece of cake compared to the first, and you will be so excited to get rid of that bag! Best of luck for a speedy recovery and a new healthy life! Emily

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    Emily Reply:

    Now that I think of it, I think I also did liquids that day before too (jello, broth, etc.). But no icky prep…thank God!

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    Daniel Reply:

    I have takedown in a few hours. Nothing to eat/drink after midnight. No additional prep. The pouch-o-gram is not as bad as it sounds. For me, the mental hurdle was the bad experiences from the prior exams which led to the surgery. This exam is a few days before takedown. No prep for this as well.

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    Lisa says:

    April 14th, 2010 at 4:38 pm

    I’m having my final surgery of 3 on Tuesday and wanted to know if anyone had additional advice on what to bring or get for after surgery. So far I have soft toilet paper and some butt cream on my list. I was also thinking about wearing some Depends at night since I’ve heard some people had leaking issues while they slept. I would feel really weird and old going to the store to buy some but if they’ll be a good investment, why the hell not? I’ve already been through the ringer and why not feel like an old lady a little longer, right? Any thoughts on this or other things I should add to my list?

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  191. avatar

    Terry says:

    April 14th, 2010 at 5:06 pm

    Lisa, congratulations on yoru final surgery! I also had a 3-step and yes, Depends help. It was quite a blow to my male pride but I got over that. It sure saves the bedding! Waht to bring? I recommend a bottle of chilled champagne to celebrate with your friends or family. You may only get a sip or two but it will be worth it, and you deserve it! Bring a camera too to commemorate the fun. This assumes that you will feel good and I hope you do. I felt so good that I was home on the 3rd day. My surgeon expected 5 to 7, based on my prior stays. My first anniverary of step three and my 64th BD are in a few weeks and I feel terrific. Best to you for the same. Terry

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  192. avatar

    Daniel says:

    April 23rd, 2010 at 11:49 am

    I am a week out from my takedown surgery (4/16). The first day-and-half were pretty difficult, but once my muscles started firing everything improved each hour. I was slow to urinate, so I requested a cath (ugghh), but my first bm was a pleasant surprise. I was able to recognize it, and retreat to the bathroom. Fortunately, I have not had any accidents, even at night. I do everything I can to eat dinner earlier in the day, which I think gives me more time to sleep. My body adjusted quickly, and wakes up when I need to bm. BTW, thank you to this blog, as I was able to institute preventive care, bringing soft tp, ad cream, etc. I was allowed to leave the hospital after a couple days (4/18), but I decided it would be best to stay an extra day. I made a few return trips due to pain management after the first surgery, so I did not want a repeat. Everything was fine, so I checked out. My only issue now is the H-Roid that I developed (ugghh). Fortunately, I have time off to take care of this, but a word of advice…do not use aenemas to treat these! No troubles for me, but the doc was none to pleased. Topical creams and hot baths will have to work.

    Any other advice out there???

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    Mark Reply:

    Hi Daniel, Yep the hemmi’s are an issue, but a small price to pay for no longer being sick. Just keep the area clean is my biggest word of advice and find the creams that works best for you, I tried tons of creams and my favorite is simply the Cortizone cream like Cortaid.

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  193. avatar

    Colin says:

    April 28th, 2010 at 1:54 pm

    Howdy guys. Getting ready to go in for surgery #2 on May 11th (can’t believe it’ll have been six months already…gwarsh!) and I was just looking for any suggestions for what to expect. My first surgery was just the removal of the colon, so they’re building the Jpouch this time. Dr. Remzi’s nurse suggested the slight possibility that this and my third surgery could be combined, but I’ve never been lucky enough in any other part of my life to think that’d actually happen. So I guess my question to “Surgery Hat Trick” folk is will this one be as physically taxing as the colon removal was? Anything I should plan for that will be different than last time?

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    Terry Reply:

    Colin, my 3rd surgery was infinitely easier than the first 2. I was in for 8 days each but out and feeling great on the 3rd day for my last surgery. I’d think that combining them would be very tolerable – not just because of my experience but also from what my surgeon told me about others. He would have combined my 2nd & 3rd but I had enough complications with the first that he wanted to be conservative. I almost had everything done at Mayo and they expected it would be a 2-step, so there seems to quite a bit of acceptance that it’s a good approach. I imagine it depends on your overall health, age, etc. Congrats to you on your upcoming bagless freedom! Terry

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    Tim R Reply:

    Hi,
    I just got home from the hospital from my take down. Mine was a three part surgery. Part 1 was hard because I was recovering from my first major surgery in my life (the only other surgical experience was wisdom teeth) and getting used to the bag and all that associated fun. Part two was probably the worst/longest recovery (needed pain meds for longer). So far recovery from part three is much better than the previous two. I already feel pretty good and am beyond ecstatic not to have the bag anymore. Taking a shower without the bag was awesome, although the staples are weird. I was so sick at the beginning that the surgeon decided that the 3 steps were necessary to give me time to recover once the colon was removed. This was affirmed after step one when everything was in plain view and she was able to see how bad the colon was. Thanks to all who offered advice on how to prepare for takedown. Bringing my own toilet paper and barrier cream helped immensely. Fingers crossed that the rest goes as well.
    -Tim

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    Colin Reply:

    Tim, was your surgery done through an open incision? Where on your body did the staples come into play?

  194. avatar

    Tim R says:

    April 29th, 2010 at 1:21 pm

    Colin,
    My surgery was laproscopic (not open). The staples were used as the closure for the skin in place of steri-strips or sutures to close the stoma. The surgeon also used them to reclose the incision under my naval which partially opened due to a seroma (not very serious blister type condition). The surgeon said she would take them out in the clinic during my follow-up a week from tomorrow.
    -Tim

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    Colin Reply:

    I see. That’s interesting about the staples. I had my first surgery done laparoscopically as well, but they closed me up with what I guess was glue and steri-strips. Kinda hoping they do that again, but from what you said, that probably won’t be the case.

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  195. avatar

    Kim says:

    May 6th, 2010 at 8:32 am

    I am scheduled to have my takedown surgery on May 11th. I am suddenly becoming very nervous about this. At my last doctor’s appointment, he told me that I would never be completely normal again. Something about hearing those words made me very depressed. He said that I may need to where something in case of accidents. There is also a chance of blockages and such and that I may even need to have the ostomy back again.

    Are there any supplies that you all can suggest for me to have on hand at home for after the surgery? How did you feel after the takedown?

    Thanks!

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    Lisa Reply:

    Hi Kim, Is there a specific reason the doctor said you wouldn’t be totally normal again? Have the ostomy bag again? Have you had complicatons? I had my last of 3 surgeries in April and literally after a week, I felt great! I was told that I might be going to the bathroom anywhere between 10-15 times a day after takedown but the most I’ve gone so far is about 6. I still haven’t experienced any butt burn but I’ve also used butt cream since day one, even if I didn’t need it. I’m just about 2 weeks post-op and I feel like I’m ready to do all those things I couldn’t do before but my doctor said I need to take it easy for a while, not lift over 10lbs, no working out, etc. for a while. Remember that everyone’s recovery is different but I would stay positive about it. A few things I had ready after the surgery were, really soft toilet paper, baby wipes, butt cream (my doctor recommended Boudroux’s Butt Paste-I had to order this from the pharmacy but it works great), and Depends (to wear just at night in case of accidents). I hope this helps! -Lisa

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    Kim Reply:

    I am very fearful of accidents in the day……is this common. I am going to school right now for court reporting, and I am thinking when I am done with school will I be able to work for say five hours at a time without accidents?

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    Lisa Reply:

    I haven’t had any accidents during the day. I’ve only had two, both at night and I was in a heavy sleep when it happened. Like I said before, everyone is different so you’ll just have to wait and see how your body reacts after surgery. It’s just been a few weeks since takedown and I already stopped wearing Depends at night. Good Luck with your surgery, I hope everything goes well and recovery is even better!

  196. avatar

    Terry says:

    May 6th, 2010 at 9:01 am

    Kim – Wow, I wonder why he said that? My takedown was one year ago yesterday. My surgeon said I’d be fine, and I am! :) I do have small accidents but I wear pads in my underwear and I still wear Depends at night but needing them less and less. Hard on my male pride but it beats messes. Many folks do even better than that. I keep supplies with me in a small, discrete kit when I’m away. A somewhat pessimistic surgeon friend of mine told me that having the takedown would mean I would be going to the bathroom 20+ times daily. Ha! My average is 6 and declining :) Are we ever really normal afterward? No, but not in a way that has to keep us from enjoying life. I golf, travel & speak at conferences without any worries. You’ll be fine – block out the naysayers and live life. Terry

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    Kim Reply:

    Do you have accidents during the day? I’m worried once I am working I will have an accident and not be able to just get up and take care of it. Also, do you have a lot of uncontrollable gas? I used to run…..will there be any problems with being able to do that again? I just want to be close to normal. :)

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    Terry Reply:

    Yes, some small ones during the day. I work mainly at home unless meeting at a client’s office so it’s a bit easier for me. I use pads to line my underwear and have never had a leakage issue (beyond the underwear). I’ve noticed less odor than when I had a complete system – must be because food doesn’t lay around as long as before. (Wife agrees) Then during a break, I can discretely change the pad if need be. Some gas, yes but Beano helps, and avoiding gassy foods. But they are not loud explosions. I feel very normal. Golfed 18 holes yesterday with NO accidents! :) Most people I see don’t have a clue about my condition. And those who do, really understand.

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  197. avatar

    Jessica says:

    May 6th, 2010 at 10:08 am

    I am 8 1/2 weeks out from second surgery and have had very bad problems with my loop-end stoma! My stoma is completely inverted in because it has shrunk so much and pulling the sides of my skin in with it which causes the seal to break. I am having to change my bag at least 2x a day if not more. If you can only imagine my skin right now….it is so irritated and infected I am living in constant pain because of it. My doctor told me about 6 weeks out that he was willing to move the last surgery up a month for me because of all the problems. He then scheduled me for May 24th which was only about a week early from 12 weeks. SInce then I’ve been calling my doctors office almost every day trying to get a sooner date. They just called me yesturday because somebody canceled a surgery, and they can get me in this next Wed on May 12th! In one way I just can’t wait to have it and get rid of this ostomy, and in the other sence I am starting to realize the affects of the last surgery and I am very nervous! Just wondering if I can get any encouragement or instruction for this last surgery. Biggest question I have is what can I expect my diet to be for the first few weeks after? Thanks!

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    Kanaka Reply:

    Jessica,
    I went thru something similar. My stoma had shrunk, but I had issues with it stopped working from time to time and had to be hospitalised!
    I had my surgery 8 weeks after my first surgery and I thank GOD for it.
    Am assuming its your takedown surgery on May12th and ur pouch will be up and functioning.
    Few things that I recommend (I have written it for someone else too)
    1. Shower your anus as much as possible/sitz bath if u can do it. I could not as I would start pooping in it!
    2. Initial few weeks, probiotics is recommended
    3. Benefiber worked well for me. less gas and easy digestion.
    4. 1-2 imodiums initially
    5. Fiber in food did not do anything to me, but am not sure
    6. Walk walk and walk.
    Good luck. Everything is going to be fine–just have the faith as thats the biggest thing IMO.
    And if itching/burning increases then:
    1.increase Fiber supplement (benefiber powder) thru the day (I take 4-5 tsps spread out in the day)–this is the most imp part!
    2. Imodium as and when needed
    3. Water: At least 8 glasses
    4. Desitin or any cream with zinc oxide after a bowel movement
    5. Wash the butt with water and patt it dry, before applying desitin.
    6. If the itching/burning is too much, my surgeon prescribed me clotrimazole and bethamethasone dipropionate cream….that imm helps!

    Good luck. if you want to talk or have specific questions, email me at kanakab at hotmail.com

    Kanaka

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  198. avatar

    Kim says:

    May 6th, 2010 at 4:40 pm

    How soon after the takedown surgery have most of you felt good enough and able enough to go running or some intense workout? I feel so out of shape since having this ostomy bag!

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    Mark Reply:

    For me it took about 3-4 weeks before I felt comfy using my body in full force. I was a little hesitant to tear something but that was more in my head than physical. After 2 wks I felt really fit and good. I think you find that within a month you’ll be in full working form again.

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  199. avatar

    Colin says:

    May 9th, 2010 at 11:01 pm

    Surgery #2 (of 3) is scheduled for tomorrow, May 11th. Any good vibes would definitely be appreciated guys. I’ve been in such good physical shape the last 6 months that going in to let them cut me open and drug me up again is gunna be a bit of a mental hurdle (heh). Hopefully it’s all for better future, ya know?

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    Lisa Reply:

    Colin, I had three surgeries as well and my 2nd and 3rd recoveries were so much easier than the first. I think most of us went into the first surgery being really sick so now that you’re healthy, the recovery will be faster and easier. The incision after my second surgery was a little bigger, to create the Jpouch, so there was a little more pain involved but I was up and ready to go places after 2-3 weeks, nothing strenuous obviously. After my third surgery, it just took me a couple days. So definitely keep your head up and just remember that the end is near and you’ll be back to healthy again soon! Good Luck with your surgery and recovery!

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    Tim R Reply:

    Colin, I agree with what Lisa said. I started feeling a lot better after the first one. The second one took some more time because of the larger incision. Bring earplugs, slippers, and maybe an eye mask to the hospital. Earplugs were what allowed me to sleep at all while in the hospital (aside from drugs). Good Luck!

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    Jackie Z. Reply:

    Jeez Colin stop whining. If I have to hear you complain one more time about your baby incisions..I will drive to CC tomorrow and disconnect your dilauded. take that. I’ll also tell a certain nurse how you’ve already named your future children. BAM! Good luck friend. I’ll be thinking about you tomorrow.

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  200. avatar

    Colin says:

    May 12th, 2010 at 5:54 pm

    Hey JPouch friends…I bring awesome news. Dr. Remzi not only performed my step two surgery yesterday, but he COMBINED it with the third one. YAH!!!! So, I woke up without a bag and I guess I kept asking the nurses and doctors in the recovery room if they were “s****** me” about being able to combine both surgeries. I’m still completely floored about this news — it really feels like Dr. Remzi and the Cleveland Clinic gave me three months of my life back because I can finally take the next steps in it and not worry about another surgery! I’m just so happy because I *never* get lucky like this. There’s a reason I refuse to go to Vegas, haha.

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  201. avatar

    Terry says:

    May 12th, 2010 at 6:44 pm

    Colin,

    OK, I’m just a bit jealous since it toook me 3 steps…but huge CONGRATULATIONS to you! Terry

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  202. avatar

    Taylor says:

    May 12th, 2010 at 7:06 pm

    Colin,
    Congrats! That is an exciting way to wake up from surgery! I get to have 2 of 2 on Tuesday the 18th. It is a nice thought to be bag free. I hope you are feeling great or least they have given you amazing pain killers!
    Taylor

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  203. avatar

    Kim says:

    May 13th, 2010 at 5:55 am

    I just had my takedown on Tuesday and my doctor said I can go home this afternoon. So excited to be getting out this fast after all the time spent in the hospital in the past.

    It is amazing to me that all my “parts” are actually working again. I am starting to have the sore butt now, though. I have a really great cream that a friend who also had this surgery recommended and that works really good. Every time I urinate, I also have a bowel movement, a gassy bowel movement, to say the least! I think my butt wouldn’t be having these issues if I weren’t having a bowel movement every time I go. The doctor didn’t mention taking anything to slow it down. Would you recommend taking something for that?

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  204. avatar

    Terry says:

    May 13th, 2010 at 8:25 am

    Kim, congrats on being put back together! I suggest Imodium or its less expensive generic, Loperamide Hydrochloride Tablets, which we get at Costco for about $10 (400 caplets) My surgeon said its OK to exceed the recommended dosage. I take 2 over 4 or so hours, then increase that to 3 per 4 hours at bedtime. They really help. I also use Calmoseptine which is an over the counter cream although I have to ask for it at the pharmacy counter at Fred Meyer, Walgreens or Safeway. It’s $7 or $8 per tube or jar ( find it’s easier to get it all out from the jar than the tube. After slightly over one yeat since my take dwon, I think I’ve used only 3 or 4 jars, so it DOES get better! I very seldom need to use it any more. I have also seen some of our Jpouch friends refer to Butt Cream, so it must be good too. Good luck! Terry

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  205. avatar

    Alison says:

    May 16th, 2010 at 7:22 pm

    Heyy guys! I just had my ostomy reversed on April 30th and i’m still getting used to my new plumbing. I started imodium 3 days ago, i was reading the bottle and it says that you have to take it on an empty stomach, so my question is, do you actually have to do that? Before i read that, i was taking it with food and didn’t notice any problems. Also, does anyone have any tips for adjusting to everything? i was doing okay, but now i’m going to bathroom roughly 20 times a day. Oh, and the dietician told me to avoid fibre for the first little while, but that doesn’t seem to be helping, and i remember reading on here that you guys were starting fibre supplements pretty early after their surgery.
    Thanks so much in advance!!!

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    Terry Reply:

    Alison, I take the generic form of Imodium (Loperamide). We get it at Costco for about $10 for 200caplets, a lot less than Imdoium. I pay not attention to wyther I take them at mealtime or not, and they help. My surgeon said it’s OK to exceed the amount of pills I take. I take 2 every 4 hours or so and 3 at bedtime and 3 again 4 hours or so after that. The 20+ bm rate should decrease substanitally. After 1 year, I’m at about 6-7 bms in a 24 hour period. You might want to keep a chart in your bathroom, so you can see your monthly progress. (pretty anal of me, I know, but the chart is encouraging because the numbers keep going down, and it’s something I can tell my surgeon because he likes data.) I don’t get along very well with the fiber supplements, so I get it with regular foods. Good luck, and congrats on your new freedom! Terry

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    Jennifer Reply:

    Hi Terry – please see the comments I listed for Colin. I’ve started getting fiber in the form of Metamucil. In my opinion, it has done wonders (in conjunction with taking imodium) to reduce the number of bowel movements I have. Just one and a half months post surgery, I’m only going about 5-6 times a day during a 24 hour period. On a really good day, it can be as low as 2-3. It does get better!

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    Terry Reply:

    Jennifer, thank you for sending this. I did try Metamucil earlier but not with limited liquids. So I’ll give it a try that way. I read somewhere that Citrucel causes less gas, although I don’t know what the composition of it is. Thanks again. I appreciate it!

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    Alison Reply:

    Thanks Jennifer and Terry! I talked to my GI today, and he seemed to think that taking fibre supplements would cause a problem because it was mainly insoluble fibre. I’ll talk to my surgeon at the end of the month when i see him. Can i also ask if you guys do/did any exercises to try to strengthen the pelvic wall? I was told they would be helpful, i haven’t noticed much of a difference though. Oh, and roughly how long did it take you guys to become comfortably adjusted?

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    Jennifer Reply:

    Hi Alison: I’m still on leave right now from the surgery (mine was completed in a single stage) – it will be my 2 month anniversary in June. At this time, I have to say I’m already feeling pretty comfortable. The first 2-3 weeks following the surgery were the worst. The movements were frequent and unpredictable. Sometimes I’d feel like I had to go as soon as I started eating. To try and gain some control early on, I decided to stick to a specific/limited routine of when and what to eat. Now, I’m more lax, but I’m still doing alright. I can go for hours without having a movement. I’m even eating slightly spicy/acidic foods! The butt burn and itchy sensations have pretty much disappeared as well. As I mentioned earlier, the change in wind occurred when I introduced Metamucil and Imodium to my routine. However, I have a j-pouch because of FAP so I’m sure my specifics are going to differ from those who have a pouch because of UC or Chrohn’s. As far as exercising, I’m still easing into that arena.

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    Terry Reply:

    Allison, I exercise quite a bit although nothing special for the pelvic wall…not sure what that would be. (???) I became comfortably adjusted to not having the bag pretty quickly. The first month I was sore…burning from the food…but that settled down pretty quickly after that month. Good idea to wait on the supplements til you see your surgeon. I just returned from a business meeting about 90 minutes away, was out for about 6 hours and didn’t have to use the bathroom at all during that time :) Whoever thought in the past that would be a reason to smile?!

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  206. avatar

    Colin says:

    May 16th, 2010 at 7:47 pm

    Hey guys. I’m home from my takedown surgery (they actually combined my last two b/c I was in good shape) but my big problem is that I have numbness around parts of the incision area. Is that normal for people and does the feeling come back with time? It’s really worrying me because some of it is near my “man” area. It’s a bit unnerving, literally.

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    Lisa Reply:

    Hey Colin, I had the same numbness in the same area after my 2nd surgery. It’s been a couple months and some of the nerves have come back but are still recovering. It shouldn’t be permanent, give it some time. :)

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  207. avatar

    Kim says:

    May 17th, 2010 at 12:04 am

    I had my takedown surgery last Tuesday, and already I feel wonderful! Big difference and I am glad not to have the ostomy bag anymore. One thing that I have noticed, and I’m not sure if I have seen it mentioned on here is right above where my stoma was and they sewed me up, there is a raised, hard, tender spot. Does anyone know if this is common and what it is and will it go away???

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  208. avatar

    Jackie says:

    May 17th, 2010 at 1:17 pm

    Hey! I’ve got #2 of #3 coming up in a few months, and i was wondering how long most people were out on the second of a 3 part. i was out 6 weeks for the first one but honestly could have gone back after 3 weeks. Thanks!

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    Terry Reply:

    Jackie, it took me 6 weeks for #1, and 3 weeks for # 2 but just a few days for # 3. Good luck!

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  209. avatar

    Taylor says:

    May 19th, 2010 at 4:02 pm

    Hooray! I too had my take down surgery yesterday! Feeling good. Still not a lot of bowel movement but enough to get real food. Does anyone know if it is still a restricted diet? I keep patting my bag…but it isn’t there. CRAZY! Any other tips or advice. This site had been amazing for me. Thanks to all of you!

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  210. avatar

    Colin says:

    May 20th, 2010 at 11:40 am

    Can we talk a little about night leakage, guys? I had my surgery on May 11 (It’s May 20th now) and I fully admit it hasn’t been very long. That said, I’ve had to wear an adult diaper every night since I’ve been home and doing that as a 25-year-old man is about the worst thing I can possibly think of. I don’t have much problem with leakage during the day, which I guess is a hopeful sign, but I need to know that this isn’t going to be an issue in the future. For the Jpouchers here, what has your night leakage experiences been? Has it gone away? What have you done to help make it a non-issue?

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    Lisa Reply:

    Colin, I had night leakage for the first few weeks but now at almost 6 weeks post-op, no leaks at night or during day. It will get better!

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  211. avatar

    Jennifer says:

    May 21st, 2010 at 7:36 am

    Hi Colin –
    I’m sorry to hear about your leakage issues. I admit, I had a few instances when I was in the hospital. One time, I getting ready to take a walk post-surgery and all of the sudden I had a leakage problem and there was a puddle around my feet. Luckily I was still in my room – it was embarrassing nonetheless. After that incident, I too started wearing an adult diaper. I also had a few leakage incidents in while lying in bed at the hospital. However, I quit having problems before I was discharged from the hospital. I was in the hospital a total of 5 days. One of the things I noticed helped me to control leakage was dealing with the issue of passing gas. I noticed that I was more likely to have leakage if I “pushed” to pass gas. That being said, I try to let any gas I have exit my body on its own. If I must “push” or aid in the process, I always go to the bathroom to avoid creating a mess. Trying to reduce/eliminate gas causing foods from your diet may help as well. About a week after being out of the hospital, I started also adding fiber in the form of Metamucil to my diet (based on a suggestion from my doctor). Metamucil has psyllium husk which helps to thicken stool. I try to get a dose of Metamucil about 2-3 times a day. I imagine that having thicker stool will aid with the leakage problem. Contrary to the Metamucil instructions, however, for those with a j-pouch the powder should not be taken with large quantities of water (as that would actually keep the stool loose). Instead my doctor suggested that I add the powder to food (my choice is applesauce since the powder is kind of gritty). Metamucil also has wafers that can be eaten before/after meals as well.

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  212. avatar

    Anita says:

    June 5th, 2010 at 11:03 am

    Hi Everyone, I had a J-pouch installed in 2003 after a first time diagnosis of UC (SURPRISE) in 2002. Having my colon removed saved my life, the following months were a roller coaster ride with a right hip replacement and recuperation, not to mention preparing for the J-pouch surgery. I’ve done well since but the past couple of years have brought escalation of recently diagnosed enteropathic arthritis. Seems I probably had it way back before the UC and it basically caused my hip deteriation. I just stopped taking sulfazalzine due to diarrhea and now I’m trying methotrexate with folic acid also at least initially with diarrhea. Does anyone have any suggestions to help with side effects or experience with arthritis or these drugs. I’m hopeful that the mex will work and I won’t have to go back to try another remedy.

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  213. avatar

    Alexandra says:

    June 8th, 2010 at 5:06 pm

    Thank you so much for this site. It’s been so helpful. It’s nice to know I’m not alone. I’m trying to decide if I should have jpouch surgery. I haven’t totally convinced myself that it’s the right thing to do. I guess it just seems so surreal. Never in a million years did I ever think it would come to this.
    Quick background on me, first diagnosed with proctitis in June 2008. My GI doc at the time kept me on a steady dose of proctofoam and canasa for almost an entire year. I never really got ‘my issues’ under control but my doctor at the time didn’t seem too concerned about it. In June of 2009 I became so sick I lost 15 pounds in two weeks and was rushed to the emergency room with a 105 degree fever. Was in the hospital for about 5 days. When i had my 2nd colonoscopy after being discharged from hospital the Dr. thought he’d have to remove my colon. And this is the doctor who kept me on canasa and proctofoam for an entire year. Needless to say, he is not my GI doc anymore. So technically I really didn’t get diagnosed with UC until September, 2009. Now the real fun begins! I’ve been on Asacol, 6MP and Prednisone since September. The 6mp was supposed to get me off the prednisone but as soon as I got down to about 10mgs a day I started having a flare up. I’ve also been getting blood work done every week and my liver enzymes keep increasing. At first my Dr’s thought it was from the 6MP so I stopped taking it May, 2010. Unfortunately liver enzymes are still high even after stopping the 6mp. My last blood test on June 3rd my ALT was 157 (normal is 9-52). I’m having a liver biopsy done next week because my Dr. thinks I may have something called PSC (Primary Sclerosing Cholangitis). Has anyone ever heard of this?? I’m also one of the patients who most likely will not respond to Remicade or Humira because I have elevated ANCA levels. One of my doctors did suggest Methotrexate but after researching I just find it so scary as far as long term side effects go. And now if I end up having this liver disease as well I just don’t know how much more I can take. It just seems as if everything that could go wrong has. This is probably why I’m hesitating on having the surgery. But now that I seem to be prednisone dependent I guess I don’t really have a choice, right?
    I’m just looking for some advice from any of you guys out there. What would you do? Try the methotrexate or surgery? I know the final decision ultimately will be mine but it’s nice to get other people’s opinions.
    I would love, love, love to have a normal life again. It seems like my life has been on hold since all this started. And its so lonely. My family is great but its hard explaining it to your friends. I look totally normal and healthy so they don’t understand why I have to do something so drastic.
    Sorry that took so long. I wasn’t as quick as I thought I would be. Thanks for listening. And any advice would be greatly appreciated!

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    Cynthia C. Reply:

    Hi Alexandra,
    I sincerely believe the best route is surgery. it enables you to be cured completely of UC and thus gain a normal life back. i was diagnosed with uc back in sept. of 2009 and went through all the same meds/steroids as you and they all had a detrimental effect on my health. they made me more sick and my liver became inflamed. i never thought i would go through with surgery, but after i became so sick and weak, and could’nt interact with my family or have any kind of life at all, i knew it was the right thing to do. plus i didn’t want my body to have to take any more of the toxic drugs they were giving me. also, a lot of these hardcore drugs end up having bad lifelong effects later on or sometimes they stop working.
    so i went through with it. by the time i went in, i weighed 100 lbs. i opted for a permanent ostomy, with the option of having a j-pouch later if i want. the ostomy is emotionally hard to deal with at first, but it is NOTHING compared to having UC. this little bag has saved my life, and i’m med free!! prednisone is the worst!!! i highly recommend getting surgery. you can do anything you want after, eat whatever you want, and never feel sick again with UC. all your energy comes back! i came out of surgery thinking, i wish doctors would recommened surgery, instead of all these drugs. surgery is the only cure, the drugs will never cure it. i hope this helps. please let me know if you want any more info or have any more questions. or if you would like to talk over the phone. Good Luck in whatever you decide!
    CIndy

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    Alexandra Reply:

    Hi Cindy,
    Thank you so much for taking the time to respond! I was so excited to see I had a reply this morning : )
    It eases my mind to hear someone else (besides a doctor) advise on having the surgery. I think the main reason why Im hesitating is because I honestly don’t feel that sick. I’m assuming its the 20 mgs of prednisone I’ve been on that’s keeping me in remission. I read all these stories of other people going thru hell with this disease. I guess I’m still kind of in denial that its come to this. I just thought surgery sounded like the last resort for people who have tried absolutely everything and are still sick. I think I just have to accept the fact that I can’t stay on prednisone for the rest of my life. I get anxiety just thinking of weaning myself off of it.
    Its emotionally very difficult too. I’m still single with no kids and I so want to have a family one day but I feel like who the hell is going to want to date me now! But that’s a whole other issue so I won’t even go there ; )
    I’ll keep you posted on my progress. And I’m sure that I will end up having the surgery. I just needed a little positive re-enforcement from other UC sufferers out there.
    Thanks again for writing me back!
    Alexandra

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    Cynthia C. Reply:

    Hi Alexandra,
    I’m glad I could give you a little comfort. I know what you mean about not being sure of surgery when you’re feeling okay. There are a lot of people out there who do perfectly fine with the all the meds, and it seems to put the UC in remission. I did notice with prednisone though, that it seemed to work for a while, but then it just stopped! My GI doc increased the amount, but i only became sicker.
    I totally understand how you could feel like no one would ever want to date you knowing you have UC or an ostomy, but although it may sound cliche, you will eventually meet your soul mate and they won’t care how your poop comes out! They’re going to love you for you! Getting pregnant is a scary thought. I have read a few stories of women still having healthy deliveries with UC. I think the scariest thought of being pregnant with UC is being on all the meds at the same time. See, another great reason for surgery!!
    I was in denial for a very long time. I was counting so much for the medicine to “just work” and didn’t really ever look into the fine details of this disease. i also think i just couldn’t believe this happened to me. i think i still am in somewhat of a denial, at least a little. Once i got sick everything happened so fast. three months later, i had lost 30 lbs, was anemic, and couldn’t hold any nutrients in my body. i hope you never get to this point. I learned that the best time to have surgery is when you feel okay, not when you are totally sick. if i can find this web interview i will send it to you. it’s a really great discussion about whether or not surgery is good for you and when you should do it.
    take care,
    cindy

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    Jackie Z. Reply:

    Alexandra,
    Oh man. I was SOOOOOOO there. Honestly. I can’t explain how much I was against this and went back and forth about it. I have to tell you, the idea of being 25 and having this bag freaked me out. I was on this board like a nut job. BUT i met some great people who were really helpful. Also, I am honestly happier than I have been in over a year. I have had the bag for almost 2 months now, and Im seriously..happy. I’m even debating not having the next 2 surgeries. CRAZY.

    This is not a ploy for my own website, but I seriously went through it all, and was right there with you. Check out my blog and read some of the comments people have listed, it was really helpful. I’m blogging before surgery and after all of them so check out the before ones and hopefully you can find some good info. I’m telling you, this was the BEST thing I have done for myself in a long time….

    bloodpooptears.wordpress.com

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    Alexandra Reply:

    Hi Jackie….I obviously haven’t mastered this website yet. I’m also technically challenged! ; ) I just posted one instead of replying to your message. Thanks so much for your response and I’ll definitely check out your website

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    Emily Reply:

    Alexandra, I suffered with UC for 10 years before I was basically left with surgery as my only option. I was the eternal optimist, thinking that the next medication would work, and then the next, until there was nothing left. My body just finally gave up, I was anemic, had osteoporosis because of all the prednisone, and I couldn’t absorb any nutrients. I finally had the Jpouch surgery last year and wish I would have done it nine years ago. It was the hardest and scariest decision I have ever had to make but in hindsight it was a life-saving decision both physically and mentally.
    I have PSC as well. I was diagnosed about the same time as the UC and I am sure you know that it is an extraintestinal manifestation (aka side effect) of the UC; sad to say probably the worst, since it leads to liver transplantation. It is certainly a crushing blow to learn that you have UC and all the horrible symptoms that come with it and then to add the PSC is more than overwhelming. Right now, I am so happy to be “healthy” again and now to face a liver transplant in a few years on top of it all is more than one can handle. I pray that your liver tests turn out positive and that you do not have PSC but if you have any questions I would love to help you with them. I can give you my email if you want. Take care, Emily

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    Alexandra Reply:

    Cyntihia, Jackie and Emily…….thank you for sharing your stories with me! And I’m so glad you’re all happy with the decision you made. 3 out 3 positive responses for having the surgery ain’t bad ; )
    I’m so sorry Emily in regards to the PSC. It is unfortunately something that I’m not even prepared to deal with right now as just coming to terms with having the surgery is enough on my plate for now and I don’t want to stress myself out too much, especially because the Dr. isn’t sure whats causing the elevated liver tests yet. My ALT went down this week to 75 so at least its going down a little. Now the Dr wants me to get an MRI and Barium test next week instead of the biopsy so I’m just saying my prayers right now and hoping God will throw me a bone and I won’t have PSC.
    One more question for you girls. Do you all have insurance? I’m not insured which is another total stress factor with all of this. I was lucky enough (sarcasm of course) to get sick with the UC RIGHT after I got laid off from my job and I couldn’t afford Cobra at the time. I don’t have coverage at the company I’m at now and of course no insurance company will touch me now with a 10 foot pole now. So I was just wondering if you had any tips what so ever in regards to any programs I could apply for. I am fortunate enough to have family who has already offered to pay but I feel so guilty dragging others into this. It’s a lot to ask of them.
    Hope you’re all doing well and thank you so much again for all the support : )

    [Reply]

  214. avatar

    Alexandra says:

    June 12th, 2010 at 5:24 pm

    Cyntihia, Jackie and Emily…….thank you for sharing your stories with me! And I’m so glad you’re all happy with the decision you made. 3 out 3 positive responses for having the surgery ain’t bad ; )
    I’m so sorry Emily in regards to the PSC. It is unfortunately something that I’m not even prepared to deal with right now as just coming to terms with having the surgery is enough on my plate for now and I don’t want to stress myself out too much, especially because the Dr. isn’t sure whats causing the elevated liver tests yet. My ALT went down this week to 75 so at least its going down a little. Now the Dr wants me to get an MRI and Barium test next week instead of the biopsy so I’m just saying my prayers right now and hoping God will throw me a bone and I won’t have PSC.
    One more question for you girls. Do you all have insurance? I’m not insured which is another total stress factor with all of this. I was lucky enough (sarcasm of course) to get sick with the UC RIGHT after I got laid off from my job and I couldn’t afford Cobra at the time. I don’t have coverage at the company I’m at now and of course no insurance company will touch me now with a 10 foot pole now. So I was just wondering if you had any tips what so ever in regards to any programs I could apply for. I am fortunate enough to have family who has already offered to pay but I feel so guilty dragging others into this. It’s a lot to ask of them.
    Hope you’re all doing well and thank you so much again for all the support : )

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    Kanaka Sriram Reply:

    Alexandra,

    Without insurance is surely tough!
    I have lots of bags and supplies for the stoma that I do not need any more. Please let me know your address and I can mail them to you.
    Please email me at kanakab at hotmail.com if you are interested.

    thanks,
    Kanaka

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  215. avatar

    Cynthia C. says:

    June 13th, 2010 at 10:32 am

    Hi Alexandra,

    Oh man, that sucks. I’m sorry to hear about your recent layoff. My husband also just got laid off. It’s pretty scary right now as far as the job market goes. I live in Vermont, and am SOOOO lucky to be here. I’m originally from California, and if this sickness had struck me while living there, i would have been screwed! Luckily VT has this amazing program if you don’t have insurance through your place of employment and in some cases you can still get it even if your work does provide it. I haven’t had to pay one penny for my illness. We have such good health coverage here, provided by the state. Our of all my jobs i’ve had none compares to this insurance i have now. I would look into what your state provides. This whole medical insurance debacle is so frustrating!! I wish we had government health care!! At least then people could get the help they need. i wish you the best of luck. i think about this all the time and really feel for those who are in this situation.
    cindy

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  216. avatar

    Michael R says:

    June 17th, 2010 at 5:35 pm

    I was wondering how long everyone’s bags were lasting on average. I can’t seem to get mine to last past 2 days. I think 3 is the longest I’ve had one on. I live in a hot, humid city and am pretty active exercise wise, so I wonder if that’s why. Or am I just normal and don’t know it?

    Good news is I have my barium xray tomorrow and get to see if I can schedule my final surgery. I want to go swimming! It’s HOT!

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    Terry Reply:

    Michael, when I had my bag, I would get up to 5 days with it. Part of the time was during a hot but not humid summer. You may want to use a different adhesive than whatever you’re now using. If you have a wound-ostomoy nurse available, he or she should be able to advise you better. Mine was terrific at solving problems. Good luck with this and the xray! Terry

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    Cynthia C. Reply:

    Hi Michael,
    My bag was leaking when i used too much adhesive paste. if i happened to apply it just a little too thickly, then it would leak in that exact spot about two days later. I don’t know if you are leaking or just feel it needs to be replaced, but i just thought this information may help. if i apply the adhesive with the correct amount, i can go at least five days.
    best of luck on your x ray!!
    cheers,
    Cindy

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    Colleen Reply:

    I could go 7 days with no problems at all, I stopped using the paste and that made a big difference for me, and I also wore the belt.

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  217. avatar

    Michael R says:

    July 17th, 2010 at 10:20 am

    Was wondering if anyone else had complications with blockages caused by adhesions after their first surgery? I had my takedown Tuesday and had been in the hospital with a blockage, but they couldn’t find any scar tissue. The surgeon said they would have to do exploratory surgery and remove any adhesions while performing the takedown. I woke up feeling like someone had taken a blender to my intestines.

    On the bright side, my pouch seems to be working well. I’ve experienced pretty serious abdominal swelling, so I’m not sure about how well I’m doing emptying out yet, but I can hold my output, which is already a step up from UC.

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    Anita Reply:

    Hello Michael. I had the reconstructive surgery back in 2003 at 49 and have done fairly well, very little pouchitis. Based on overall observation, I asked the colon/rectal surgeon if I more than likely had adhesions knitting my small intestine to my abdominal cavity – yes, most likely according to the doctor. At times I will feel pain pings in and around the area where the illeostomy was especially which I think are areas which become irritated. Once I made the mistake of eating an apple with peel and the peel blocked my faux tract somewhere and put me in the hospital for 3 days until it resolved itself. The doctors will be hesitate about doing anything short of an emergency due to more scar tissue being formed. What I do know is that I’m thankful I have done as well as I have and hope that everything continues. I suspect you don’t have have any scar tissue yet but just swelling/irritation in your small intestine, it should get better. It will take some time to find what works for you. Try eating sticky rice to slow down the digestive process. Good Luck.

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  218. avatar

    Colleen says:

    July 18th, 2010 at 8:44 am

    I had my takedown surgery on Tuesday, and I can’t take this anymore! I am in the washroom every hour or so. My surgeon told me to wait 4 to 6 weeks for fibre and immodium, but has anyone used it sooner without any problems?
    Also, when I had colitis my butt never burned like this……..why is it now?

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    Michael R Reply:

    I had mine Tuesday morning too! We’re takedown buddies!

    Butt burn is caused by the digestive juices that break down the food not being re-absorbed because the digestive tract is shorter. I used to get butt burn with UC when i was having a severe flare and food was moving through me very quickly. I was told to wait at least 2 wks before starting fiber/immodium. Hang in there, I’m sure it will get better!

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    Colleen Reply:

    Thanks for the reply Michael, hope everything is going well with your takedown. Are you going to the washroom often?

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    Michael R Reply:

    I was going 8-10 times a day in the hospital after the surgery. I’m down to 6-8 or so now. I’m trying to get used to eating small constant meals instead of three big meals a day. I felt awful after the surgery, though, and things really turned around pretty quickly for me. Maybe you are just about to turn the corner too. Stressing too much won’t help. Just try to be careful about what you are eating and I think you’ll be fine. Maybe someone else can chime in with when to start the immodium/fiber. I’d be careful, but I think the concern is stopping your intestines before they get going and damaging the intestines before they have a chance to fully heal.

  219. avatar

    Kanaka Sriram says:

    July 18th, 2010 at 10:03 pm

    Colleen, Although my surgeon initially said 2 weeks for fiber, he asked me start taking it after 3 days. I highly recommend benefiber as its easy to take and has no side effects.
    also immodium (I just get the costco brand as thats so much cheaper).

    GL

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  220. avatar

    Michael R says:

    July 21st, 2010 at 4:45 pm

    Does anyone know if there is a charity that collects and distributes ostomy supplies to people that may not have insurance or may have trouble paying for them because of unemployment etc? I’d hate for the leftover stuff I have to go to waste, especially since bags are so expensive.

    If there isn’t a charity or group that serves that function, is there anyone on the site who may be needy and would like some free supplies?

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    Kanaka Sriram Reply:

    Hi Michael, if you find one, can you also please let me know. I also have lots of supplies that I would like to give it away to someone who will use it.

    thanks,
    Kanaka
    kanakab at hotmail.com

    [Reply]

  221. avatar

    Jackie Z. says:

    July 27th, 2010 at 3:31 pm

    Hey everyone,
    I’ve been feeling some joint paint in my fingers, and I know that it can go hand in hand with colitis. Theres some info out there but nothing really on treatment. Anyone have this issue? Do you take just regular arthritis treatment stuff, like asprin (even though its bad for the gut) or do you take something else?

    I can’t take the biologics, so any other thoughts? Thanks.

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    Russ Reply:

    I’ve had joint pains off and on for years due to UC. It’s called enteropathic arthritis. (Isn’t that a nice name? Sounds so wholesome….) During my first major arthritis flare my knees and ankles were so swollen I couldn’t walk for a week. Tylenol helped a lot. Your doctor may have other (better) remedies. Good luck!

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    Nick Reply:

    I didnt know joint pain was hand in hand with colitis..I do have joint pain off and on but I take Glucosamine & Chondroitin from Trader Joes…It really helps me

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  222. avatar

    Ezo says:

    August 5th, 2010 at 5:58 pm

    Hello. Here is my story, the short version. Im 34 spent the better part of the last 20 years dealing with UC. Life was good when it was good and bad when it was bad. Then my doctor tells me I have multifocal dysplasia of low and high grades. The cancer potential led me to J pouch surgery 1 in April 2010. I was 19 days in the hospital with complications from the surgery. Right now Im preparing to begin the necessary rounds of testing in order schedule the take down surgery. The bag isnt so bad compared to UC but it does have its challanges. Tomorrow is the first test day so lets pray all goes well. All in all im happy with the choice ive made to have surgery. I feel better now than I ever did and no more pills by the dozen. Each day is the first day of the rest of your life, so go out and live it.

    [Reply]

  223. avatar

    Kanaka Sriram says:

    August 6th, 2010 at 9:39 am

    Hi,

    Please help me. I had my takedown more than a year ago and have been good so far. Now for past week and half, by evening, I am a mess with wanting to poop, but not really emptying. And then the butt starts burning.
    I am finding it diff to find the exact fiber/imodium to talk to achieve the balance. I am drinking lots of water too and exercising, but not sure what’s causing it?

    Please help
    thanks,
    Kanaka

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    Merry Lynn Guy Reply:

    have you gone in for your year check up? Maybe your pouch needs to be adjusted with an exam. Calmoseptine helps with my burn when it acts up. have you tried using a probiotic over the fiber. Maybe you just need some good flora these days. I don’t use fiber/imodium.

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    Kanaka Sriram Reply:

    Merry,
    Thanks for the response. I will start eating probiotics again. I am surprised that you do not eat fiber/imodium. Then how do u slow down your bowels? I am assuming you had your colon removed right?
    I do not have a colon, only jpouch.

    thanks,
    Kanaka

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    Nick Reply:

    I never liked imodiume.It gave me nothing but headaches. I buy walmucil..its walgreens version of metamucil…I like it better than metamucil…before breakfast or a couple bites in..Take 2 spoonfulls in your mouth, then get a little water in your mouth to make it wet and not to sandy..”Just wet enough to go down without choking”..repeat again, and maybe a third time…6 spoonfulls total…do this before your afternoon snack, and again with dinner..this will make yer poop solid and not so liquid. You need to drink a lot of water,,,but not with your food, if you drink alot with your food, you’ll make your food watery, and thats when your butt will burn..and get calmaceptine! I make my Walgreens order for me!! Its manthall is so helpful..and finger it in a bit..cuz the itching and burning of the butt burn is on the inside too..this soo helps..

    [Reply]

  224. avatar

    Terry says:

    August 6th, 2010 at 2:26 pm

    I’m still having problems 15 months after takedown with waking up to find I had a bowel movement – often 1-2 time nightly…maybe 10% of the time zero. No daytime problems. I am switching my probiotics to VSL #3 to see if that will help. But I also take Immodium. My GI doc says I can take more than the recommended dosage. So I have just started taking 4-5 nightly about every 4 hours. I don’t know if this will help Kanaka. Seems like I’m always searching for ideas, so if you have comments, I’m open to ideas.

    Terry

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    Kanaka Reply:

    Hi Terry,
    Thanks so much. So far, for past 1 year, I have been fine with some bad days of itching and burning. But last week has been just horrible. I take benefiber (5-6 tsps) thru the day. I rarely take imodium, except when itching does not stop with fiber. I will restart vsl#3 again and see if it helps.
    GL to you too. See if benefiber helps u. Is your stool semi solid (soft) or liquid?

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    Daniel Reply:

    I have had similar issues with the burning/itching. I too use Calmoseptine, which can be purchased over the counter. In addition, my Dr. prescribed Tetracaine (2%), which is the numbing agent they use when they perform rectal exams on us. I will not be on this forever, but it can get you through some rough times for sure. Generally, our pain is caused by skin breakdown, although it may feel like our stool has turned acidic.

    My best advice would be to use a squeeze bottle and take regular baths (sitz 2-3x/day). The bottle can take some getting used to at first. You have to fill up the bottle before using the restroom, which can be awkward. I just think of it as being European, like having a bidet. No one has ever said a thing.

    Also, I have stopped drinking with my meals. I wait 30 mins before and after, then I drink again. It’s an experiment at this time. I have been eating Activia yogurt (dr. recommended), Benefiber and Immodium. I always try to have a BM before bed and try not to eat before bed (3 hours if I can). I also try to stay away from dairy, chocolate, caffeine, soda, alcohol, fatty foods, etc…you know, the fun stuff. The only one I struggle with is chocolate.

    I am now 4 months post take down, and this has helped out tremendously. I have my bad days, but the last 2 weeks have been by far my best in a long time. My goal is to run Hood 2 Coast again, like I did in ’06 and ’07, and I would like to run a marathon. My Dr. and I agreed, I’ll have to run fast for the Marathon…which I intend to do.

    [Reply]

  225. avatar

    Terry says:

    August 7th, 2010 at 4:48 pm

    Kanaka & Daniel,
    both of you gave me good info…THANKS! I seldom have burning issues but use Calmoseptine when I do. I take hot baths morning & night and sure read a lot of books in so doing! I had forgotten about waiting to drink before or after but not during meals! So much to keep track of. I will add Benefiber to see if it works for me. Just started VSL #3 today. My stools have been semi-soft although occasionally liquid. I think I need to pay more attention to what NOT to eat and drink…and when. I’m used to wine or 1 or 2 cocktails with or before meals but may have to change that regimen. drat. I read on one of the posts that just minimizing sugar helps. And alcohol does have sugar so maybe that’s the nexus. Daniel, good luck on the HTC and a marathon. My daughter works for HTC….a busy season for her. When you complete a HTC event, please let me know…she will be thrilled. HTC loves stories like that. Good luck to you both . It’s quite a life experience – but I don’t let it slow me down and it looks you don’t settle for that either. :)

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  226. avatar

    Heidi says:

    August 11th, 2010 at 10:08 am

    I have a lot of extra ostomy supplies I have been looking to donate, but I can’t find anyplace?

    [Reply]

  227. avatar

    john says:

    August 11th, 2010 at 9:18 pm

    In relation to your over supply of ostomy products might I suggest you log onto
    http://www.ostomy.evansville.net/ and I am sure larry will find you a needy recipient.

    [Reply]

  228. avatar

    Michael R says:

    August 16th, 2010 at 2:12 pm

    Does anyone have recommendations on what to drink other than water? I’ve tried every kind of juice and prepackaged teas and my new plumbing does not seem to appreciate them, no matter how nice they taste in my mouth. Even vitamin water seems to set me off (not sure if it’s too acidic or if the sugars are bothering me). I’d like to know if anyone has found a good drink, other than water of course, that is easily tolerated.

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    Terry Reply:

    Michael, what phase are you in, ie. 1st, 2nd or 3rd surgery and how many days since then? I ask because I couldn’t tolerate water for about the 1st six weeks after my colectomy, then my wife started putting a wee amount of fresh lemon juice in it and I could handle that just fine. I also drank rice milk drinks (chocolate & strawberry) and I handled them well, and they tasted fine. I drink Tazo Zen green tea every morning. But my favorite is an oz of bourbon or Scotch at night. :) I prefer wine but don’t tolerate it as well. I had my take down 14 months ago. I wish I could offer more help but that’s all I can think of. Good luck!

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    Michael R Reply:

    I’m finished with all surgeries. Had my takedown on July 13th. I do well with hot tea but everything else causes my intestines to speed up and butt burn.

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    Colleen Reply:

    What about Gatorade? I have been able to drink 1 a day if I think of it.

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  229. avatar

    Terry says:

    August 16th, 2010 at 4:08 pm

    Michael, I checked my post-op info fro my hospital and found chicken soup, bouillon and Pedialite on the suggested list. Pedialite is a good source of potassium and sodium and we need that. I get tired of the broths but I did drink some regularly in the earlier days. I also drank Ensure for protein. My doc said I could take more Immodium than recommended on the package. Also, I take Pepto Bismal in the evenings to firm up the stool. It mught help you during the day as well with settling down your intestines. Something doesn’t seem right with your case. You might try contacting Mayo Clinic thru its website…or a clinical dietician. The surgeons tend to not know much about the food and drink side of things but they often know of experts who could help. Also, my wound ostomy nurse was a great food and drink advisor when I had the bag. Good luck on this! Terry

    [Reply]

  230. avatar

    Colin says:

    August 24th, 2010 at 10:50 am

    Hey guys, just wanted to let everyone know that Jackie Z. is going in for the second step of her three-step J-Pouch surgery today at the Cleveland Clinic. She’s scheduled to go in at 2:00 and it’s 1:49 currently, so if there’s ever a time for good wishes…It’s right now!

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    Taylor Reply:

    Any word on how she is doing?

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    Colin Reply:

    Jackie talked to me a little bit today on Google chat, but she was really in and out from the medication. She mentioned something about a four-step (she was execting three steps) procedure now, but I don’t know what that means. I’ve never heard of it being done in that many steps. I hope everything’s okay.

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  231. avatar

    Sammie says:

    September 10th, 2010 at 1:35 pm

    Hey l’m sammie. 3 weeks ago l had my large intestines removed because of living with 6 years of uc. l was on plenty on medications, but none seemed to work and l was getting sicker and sicker. The operation is suppose to take 2 hours..mine was 6 because my large intestines were so bad. Now l’m on the bag, and hate it. l’m some what use to it now…but have alot of problems with leaking. Any suggestions to help? Also after my surgury l had very bad depression- l was on a high amount of prednisone and they weaned me off very fast. lt’s been almost 3 weeks sense the wean, and thought l would feel better by now. But there are days where l feel just..empty numb and sad. Has anyone else had this problem and does it get better? l am having the reversal surgury in 28 days and can’t wait. l want my normal bagfree life back. l was very happy to find a website where their are people who have gone through what l am now :)

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    Sandra Reply:

    Hi Sammie,
    You’ll also want to check out jpouch.org, if you haven’t already.
    Both of these places are the best for venting, seeking advice, and helping others like you.
    Be well.

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    Kanaka Sriram Reply:

    Hi Sammie..congratulations on a life free of UC. You will love it. This is a big step. I had a horrible 8 weeks between my first and second surgery. But remember, this too shall pass. Have faith..thats the most important.
    Life after Jpouch is soo much better. First few months, till u get used to it will be tough. GL!

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    Cynthia C. Reply:

    Whoops! I posted a response to you Sammie, but i think it ended up in the regular postings- not this reply section. I hope you can find it!

    Cindy

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    Sammie Reply:

    Thanks everybody. The advice and encouragement help :) l really just can’t wait to be back to normal. l hope it goes by fast.

    [Reply]

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    Sammie Reply:

    Also one other concern…after the final surgury “reversal surgury”, how long does it normally take to get back to normal? l mean l’ve read some about people having a hard time with bowel movement control. l’m not to to worried about it, but just read about the unpleasant butt burn and constant bathroom trips.

    avatar

    Kanaka Reply:

    Sammie,
    It takes a few weeks to few months to regulate your bowel moments with fiber, imodium and calmoseptine. But remember, u will have the control!!

    avatar

    Daniel Reply:

    Keep your head up. You are not alone, as we have all been in your shoes and are willing to share our happy post-surgery stories. Just remember, the bag is temporary and anyone can bare anything for a short time. What we have adjusted to is a less-painful and sustainable life. This blog could have very easily been about colon cancer, but medicine has given us a chance to talk about something much more positive.

    [Reply]

  232. avatar

    Cynthia C. says:

    September 12th, 2010 at 7:17 am

    Hi Sammie, Congrats on getting healthy and getting that troublesome colon out of your body! I want to say, I know how you’re feeling right now. I went through surgery in January of 2010, and decided on a permanent bag for now. I was so sick, my surgeon recommended me to wait for the j-pouch until I get healthy again.
    I became very depressed as well after the surgery. I had to wean off prednesone too. My hair fell out because of the stress of surgery and my facial skin broke out because, I assume, all the drugs I was on. I had to boost my immune system as well. BUT- the more I thought about how I was feeling, the more I began to realize that this little bag saved my life. It gave me back my life- I could play with my kids again, love my husband and dance! It changed my life! In the beginning it was hard, no doubt. I had to change my whole wardrobe and it seemed like my whole life was surrounded by my BAG! My first leak was devestating. I’ve gotton used to it, finally. I try to think positive about it, because it really did give me my life back. A friend said I need to try and appreciate everything my body is doing for me on a daily basis. This advice has helped me. Try, try, try to be a positive as you can. When you’re dealing with your bag, send good thoughts to your whole body and the bag.
    As far as advice on leaking, i still get leaks sometimes. it’s usually when i put too much paste on or mostly when i wear the wrong type of pants. Good luck. Try to begin to enjoy your life free of UC. You will feel better.
    Cindy

    [Reply]

  233. avatar

    Kanaka Sriram says:

    September 13th, 2010 at 6:34 pm

    Hi,

    I had my surgery last year and have been doing generally good. Today evening, I had blood in my stool. No other symptoms other than that. I have had really formed stools for past few weeks, without any aid of fiber.
    I am petrified…and do not know what to expect. Please help!!

    [Reply]

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    Taylor Reply:

    Have you been doing any extra physical activities? Doing exercise can cause light bleeding and it is okay. I read a whole bunch about it when I started running after surgery!

    [Reply]

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    Kanaka Sriram Reply:

    Hi Taylor,

    Thanks so much. I have been doing excercises for past 3-4 mos now. I have had lots of blood in my last 3 stools. Am not sure whats happening. Another thing is that I also have pain above my tail bone.

    [Reply]

  234. avatar

    Terry says:

    September 14th, 2010 at 1:01 pm

    If you’re up for a laugh, I was concerned about this too a few weeks ago when my wife reminded me that I’d eaten a beet salad the previous night. That was a relief :) Terry

    [Reply]

  235. avatar

    patti says:

    September 19th, 2010 at 11:41 am

    can you still get ibs or crohns even though you have no colon but you have a j pouch

    [Reply]

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    Merry Lynn Guy Reply:

    There is a small chance that UC can come back as there is a small portion of your rectum left in order to make the cusp for the jpouch. UC is a disease that starts at the bottom and moves up the intestine…EVEN if it had never showed signs there. This is what I was told by my GI and two surgeons when they were explaining the disease and why a reversal to ostomy might take place if disease returned. However this surgery is often considered the cure for UC because the only way to rid yourself is to have it taken out. IBS….I don’t think you’d have this surgery if you had IBS as that is a syndrome….crohn’s…yes because crohn’s is a disease of the entire digestive track. From Mouth to Bottom. Hope that helps.

    [Reply]

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    Eric Reply:

    The above is correct: you can have a mini-flare with a jpouch, depending on the construction, as you have a bit of your large intestine left (just a skosh). And, yes, you can have a jpouch and have Crohn’s as you still have your small intestine and the rest of your digestive tract.You might want to find some of Lizz’s stories for this one.

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  236. avatar

    Sammie says:

    September 21st, 2010 at 5:42 am

    Heyy, my last surgury is in 17 days! l can’t wait to get everything back to normal and be bagfree by halloween and spend it with my family. l have a question of how long has it generally taken to recover from the final surgury? One nurse l talked to said l would be back to normal within a week & a half, then another said 2-3 weeks. My mom and l discussed that everyone’s body is different and takes a different amount of time but l would like to hear from people who have actually had it done. Thankss!

    Sammie <3

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    Colleen Reply:

    Hi Sammie, it took me about 3 weeks. I don’t want to scare you but those first 3 weeks were horrid (burning and non stop washroom breaks) but now 2 months later things are AWESOME! It is different for everyone, but if it starts out bad for you just remember it gets better and better.

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    Carin Reply:

    Hi Sammie, I was in the hospital for 7 days after my take-down surgery (Jan. 27, 2010), but the recovery took a little bit longer. Colleen is right – the burning butt is HORRIBLE, but…if you ask the doctor to order calmoseptine from the hospital pharmacy (and then you can buy it from the drugstore once you run out), and apply it liberally and religiously right from the start, you will save yourself a LOT of pain and frustration. I keep a baggie full of glove fingers (I cut the fingers off of the gloves so I get 5 uses out of a single glove) with me at all times, along with the calmo. It really does get better and better each day. Just be on the lookout for pouchitis (increased trips to the bathroom and seepage/leakage at night). Best of luck to you – I remember how excited I was!!!

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    Martin Reply:

    Hi Sammie, I hope by now that things are settling down for you. I had my pouch done in 2000 and have had 10 years of reasonable wear out of it so far. I remember the surgeon telling me that the most important thing to remember is that the pouch has to learn to take up its new function. I was told, back in the day, that although the pouch will function quite well after a week or two, the optimal pouch function could take 6 to 18 months to achieve. This doesn’t mean you have to be uncomfortable for that amount of time, it simply means that the pouch can grow and adapt to its function over that length of time. So if you find that it’s working now but now as good as you had hoped for, then just remember that it is only the begining and that given time it can and will probably improve. Before my surgery I had never been able to go for long walks or do anything to strenuous, within the first four years of my J-pouch, I had climbed 4 of Scotland’s highest peaks (ok – so they are not very high by world standards but the fact is they were a challenge). Burning butt is a fact of pouch use and can be affected by diet but there were and I guess there still are, effective barrier creams that can be used. I have used normal washrooms for years now and simply carry my own supply of soft tissue and wet wipes. Pouchitis is an issue that many people face and I am grateful that in 10 years I have had only three serious bouts, the last and worst being this year. The other two attacks were dealt with using standard antibiotic treatment and cleared up within a couple of weeks. I have waffled a bit but I think what I’m trying to say is that each person is different and each person’s J-pouch will be individual to that person but it’s worth remembering we’re in it for the long haul. Short term discomfort is murder at the time but usually it will settle down and life can be lived pretty close to normal. Good Luck.

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  237. avatar

    Sammie says:

    October 9th, 2010 at 6:12 am

    l had my reversale surgury yesterday! Sooo glad to be free of the bag. And l pooped for the first time! hahaha l am very open. l can’t wait to have something to eat and drink. l can’t wait to get life started.

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    Michael R Reply:

    Congratulations Sammie! Keep in mind that how your plumbing operates in week one or two will not be how it ends up. Your body will adapt over a month or two so things will get even better with time.

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  238. avatar

    Alison says:

    October 23rd, 2010 at 8:06 am

    Heyy guys!
    I had my ostomy reversed about 6 months ago. I’m having some problems (pouchitis and just still a really high number of times a day, about 15) and i’m thinking about going back to my ostomy. I didn’t mind it, to be honest i kind of liked it and i’m tired of still feeling sick even though i’m supposed to be better and there’s nothing the doctors can do for me. I’m having a sigmod oscopy soon to look for inflammation. So my question is, has anyone decided to go back to there ostomy and if so, how did you make that decision? I know i haven’t given it very long and i’m going to try to live with it for at least a year but i’m getting tired.
    Thanks so much for your help!

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    J Haas Reply:

    Alison,

    I had my jpouch for about 8 months and had trouble from the first week. We struggled keeping the inflammation under control and a pre-sacral abscess that wasn’t helping the situation. I had developed a fistula that required surgery and instead of having another temp ileo, rebuild the pouch, and another takedown, I decided to just go to a permanent ileo. I felt if I had to get opened again, I’d rather only do it once (although, it’s likely I may need an ostomy revision next year.)

    I didn’t mind having an ostomy previously (temp between step 1 and 2), so deciding to have it permanent wasn’t that large of a step. I had UC for almost two decades and had dealt with the situation of moving to a permanent many years ago: The J-Pouch was something to try before committing to a pouch. I gave it a wing and it didn’t work out (My CWOCN says I’m the biggest problem she’s even seen!)

    I would never tell someone to give up on it, but I wouldn’t tell someone to struggle forever as well. Know what you’re comfortable with, how you’ll manage in the future, and what your limits are. Those answers will tell you what decisions you need to make in the near future and onward.

    Good luck on whatever you choose… It’s your life, so don’t be pressured to go either way! Only you know you! If you have a significant other, be sure to work with them as well: My wife was highly supportive throughout all of this and was more than happy to see me get my ostomy (and my life) back.

    -J

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  239. avatar

    John S says:

    October 27th, 2010 at 10:41 pm

    I hear you J, I have just returned to another j pouch after 2 1/2 years of an ileostomy. The ileostomy was life of some sorts but for me it also had problems, like 5 pints of fecal output per day as well as a length of bowel protruding into the bag on 2 occasions after doing something physical. The first one was a violent sneeeze, I felt the guts sliding out and held on to it and pushed it back and then went to see the stoma nurse.
    I am 5 weeks after take down, I already have a strictured anastomosis which makes the pouch very easy to block up. So I am not safe just yet, I would not be surprised if sooner or later I have to revert to the ileostomy again, you can only take so much and then decisions have to be made. I have been told if I have another ileostomy I will have the sphincter removed as well so I cannot go back once again, sounds like a threat to me, I must be wearing out my welcome at the hospital. I just wanted to let another X poucher know that you are far from alone with this, take care now, with regards from John S

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  240. avatar

    Team Roster says:

    October 30th, 2010 at 2:12 am

    Maybe you should change the blog name title Jpouch Life: Stories of Colitis, Crohn’s, IBD, Ostomy, Ileostomy & J-Pouch Surgery from around the world to something more suited for your content you write. I liked the blog post even sononetheless.

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  241. avatar

    alissa says:

    November 15th, 2010 at 11:42 pm

    Hi,
    i am new to the idea of the possibility of having surgury. i am allergic to all the medications on the market and have tried every holistic approach i come across. i have one last medicine to try, Remicade, so am looking into surgury if this doesn’t work. i’m 43 and have had it for almost 10 years. i have 2 young children and am sick of worrying everyday all day and living on the edge of my seat. i have not really had any reprieve in the past 9 years and am currently going about 15 times a day. i am really active and would love to go on long runs or walks.
    would love to hear any feedback anyone has.
    thank you!

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    Tim R Reply:

    Alissa,
    I had tried all the available meds and some trial drugs and nothing worked. I had my last part of 3 surgeries for j-pouch on April 26 of this year. I am doing pretty well. I am still going more than pre-diagnosis normal, probably 6-8 times per day, but it is more predictable and a LOT less urgent. Previously I had as little as 30-60 seconds notice. Now I can wait for as long as I need to. I run 2 miles twice per week (only limited by my own physical condition- working on more), lift weights 3x per week and play soccer on Sundays. I waited for surgery until I felt I had exhausted all other possibilities and I was certain that I had to have it. I don’t regret that waiting for that reason but I certainly would have enjoyed this quality of life instead of the last 3 years of colitis. I was diagnosed at 21, was severe for 5-6 years, drug induced remission for 5 years, then severe (worse than the first time) again for 3 years. It is a big relief and now I look forward to doing the things I enjoyed doing without worry. -Tim

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    Cynthia C. Reply:

    Hi Alissa, I understand what you are going through. I highly recommend surgery. It will get you your life back. You will feel completely normal. It’s almost too good to be true. I had a similar experience of being allergic to all meds and then the next drug they wanted to give me was remicade. My husband and I decided that the side effects and possible chronic illnesses associated with this drug were way too costly. It was alomost a blessing in disquise that I became allergic to everything because it forced me to get surgery (and i was terrified of this) and it was the best choice I think I’ve ever made in my life. I chose to have a permanent ostomy with the option to choose a j-pouch if i want too any time in my life. I am happy with the ostomy. It was hard at first but nothing, absoultely nothing, compares to having colitis on a daily basis. You will get your complete life back with the choice of having surgery. I have two kids as well, and I’m so happy to be healthy again. I can do everything. I chose the permanent ostomy because I really didn’t want to go back to the hostpital for a jpouch surgery and I didn’t want any complication with a jpouch like pouchitis ect. The “bag” gives me NO problems whatsoever and I’ve learned to except it. I can wear anything I want including bathing suits and tight fitting dresses. I agree with my GI Doc, “if it works don’t fix it” and my body is working fine now!!
    Good Luck,
    Cindy

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  242. avatar

    Cynthia C. says:

    November 16th, 2010 at 7:25 am

    Hi Everyone,

    I just wanted to let everyone know who’s been on Predisone that it definitely weakens your bone structure. I was on it for six months at 60mgs a day while diagnosed with Colitis. I am Colitis free now, and have been for 9 months, but I just broke my leg while playing volleyball. My ACL, instead of just freeing itself from the tibia, actually torn a chunk of bone out with it. A very large piece too. My orthopedic surgeon said my bones are soft because of Predisone. I now have four screws in my bone. My surgeon said he had to put more in than usual because the screws wouldn’t hold due to poor bones. I am only 37! He said he’s never seen this happen to someone my age! SO- make sure you all take plenty of calcium and Vit. D! Now I have to get an MRI to find out exactly how bad my bones are and do weight lifting! It makes me angry because all my GI docs said I would have to be on Predisone for years in order to have your bone stucture compromised. Well, that is not true!! I was so excited to join this volleyball league too! Now i’m out until February..
    Best, Cindy

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    Russ Reply:

    Hi Cynthia,
    Sorry to hear about your broken leg; I hope it doesn’t put too much of a crimp in your holiday season. :( Unfortunately, prednisone-induced osteoporosis/osteopenia is all too common a problem with IBD sufferers (or anyone on long-term prednisone). I’ve had osteoporosis for three years and can’t seem to improve my bone density due to continued use of prednisone. So, those of you on the big P for more than a few weeks: talk to your doctor about how much calcium and vitamin D you need and have your doctor give you a bone scan! FYI, there’s a great deal of info about osteoporosis at nof.org.
    Good luck!
    Russ

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  243. avatar

    Anita says:

    November 16th, 2010 at 8:28 am

    Hi, This is my second post. I had the “j” pouch put in in 2003 after a first time diagnosis of UC that went from bad to critical. I’ve done well, no chronic cases of pouchitis, been able to at least sample most food with a few dishes that send me to the bathroom (fatty foods, chocolate), find that sticky rice with sushi goes through slowly. What I have recently learned is that inflammatory arthritis goes hand in hand along with the auto-immune diseases (I have Hashimoto’s thyroiditis) and having UC. I’ve been taking methotrexate (along with celebrex and extra folic acid) for enteropathic arthritis and would like to know if anyone is on this regimen? I have been having skin problems around the rectum for several weeks and using calmoseptine for treatment of the area and have to wonder if this is a reaction to the meds.

    Anita

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  244. avatar

    Ezo says:

    November 18th, 2010 at 2:59 pm

    Hi, I posted here a few months ago. Went in on Nov 5th for the take-down surgery to turn on the j pouch. I lived for 7 months with an ostomy due to complications from the first surgery. All in all im doing well but going to the bathroom 20 to 30 times every 24 hours. I never get more than 2 hours without making a trip. Im wondering if this is possibly due to not using any of my muscles and what not down there for such a long time. Any body else had similar experience? I know that im only 2 weeks post op and i do get some semi formed movements without any fiber supplements. The burn is controllable with ointment but what about itching? Im thinking of trying a powder to stop the itch. This is still better than the 20 years of UC. :)

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    Terry Reply:

    Ezo, I’m sure your bathroom trips will decrease substanitially. Be patient but keep doing those Kegals. My BM’s average 5 – 6 times per day, and I think that is close to the average of most people. I believe my doc confirmed that some time ago. I have night-time trouble because I don’t wake up with “the urge” and when I do wake up, I often find that I had an accident. I hate using Depends at night but I’d hate messing up the bed even worse. But I very, very seldom have any daytime accidents. I like your attitude about even this being better than 20 years of UC. Good luck to you. Terry

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  245. avatar

    Jenn says:

    November 27th, 2010 at 7:56 pm

    I am SO glad that I found this site!

    I am hoping to find other women who have gone through pregnancy or are young moms with a j-pouch. My blog is here: http://jennhearn.wordpress.com/

    Aside from my pregnancy, I haven’t posted much about my pouch, but I am considering adding it to my blog. It is a huge part of my life, so why not, you know?

    [Reply]

  246. avatar

    Nathane says:

    December 3rd, 2010 at 8:31 am

    To whom will Please Listen, I know it’s kind of long but please read!

    Take a Deep Breath and imagine this story is about the person you love the most.
    I am writing this in a desperate plea to save a man who deserves it. My Dad Larry VanHoose. A man who’s goal in life has always to been to live healthy, help people who need it , take excellent care of his family and go the extra mile to do what’s right in life. I could go on and on, but I am trying to keep this short and to the point so someone will read it and get us one step closer to the top notch help we need.
    Quick History of my Dad: D.O.B. -Jan -1943
    He has always been in great shape healthy and no bad habits to hinder his health until six years ago when this emotional nightmare started. After going to the emergency room for a flare up of colitis that was severe.

    Surgery List: All in same large incision down abdomen

    #1-2004 – Colon removed with temporary illieostomy and j pouch construction. With and overdose of dilated because of machine programming error.(it was bad). Also was contracted with MRSA on the Liver from the surgery. There was a cyst on liver biopsies and was MRSA.

    #2- 2005 – Illieostomy reversal and j pouch hook up.

    #3- 2005 – 5 days after reversal, Surgeon had to go back in and fix adhesions from previous surgery (left incision wide open to heal( it was bad too)

    #4 -2006 – He developed a large hernia down the incision sight that was causing his guts to exit the muscle wall. So the surgeon used the kugel patch to repair. Repair did not last and was badly infected and painful.

    #5 – 2006 – Surgeon removed Kugel patch and cleaned then tried to repair with permical(Pigskin) Patch. In hopes that body would except and heal more natural patch.

    #6 – 2008 – Pigskin Patch Failed and seemed to be eaten up by the body. Large hernia was back. Feeling out of options I researched and pleaded much like I am doing now. We eventually found Doctor Rosen from the Cleveland University Hospital that had a new way to fix this type of life threatening hernia. Large Ventral Hernia Repair with laparoscopic component separation. Finally a success.

    That
    brings me too now. 12/1-10
    Beside adjusting to the new way of life with the jpouch things were good and manageable. Until recently dad started eating some bulk forming fiber. He might have over did it. Said one day he strained a little bit to go and said it felt like an inch or two of the small intestine came out? He pushed back in and let it heal for a few days by not eating. When we resume his diet he was not going as normal. Said it felt like something was closing shut. He was getting distended from no bowel movement. Milk of mag helped him to go a little bit for relief. He went from his normal of having 8-12 Bowell movements a day to barley going once with help of milk of mag. After a few days of waiting it out and him dropping 12 lbs to 129lbs. We went to the surgeon that hooked up the jpouch. He did a rectal exam with short scope and vac. Said all looked normal and well. As we told him all was not normal and well. He/we scheduled an Upper Gi with Barium contrast to see if anything shown .The next day we had the test and waited for six hours for it to enter the pouch never did. X rays shown it was getting to the top of the jpouch but then not entering correctly. It seems to cut down to a thread like section wich is probably why he is still able to go a small amount everyday .This was thanksgiving weekend and said we should follow up next week or go to ER if gets worse. I’m not sure if he is capable of finding out the problem and suggested surgery that would destroy the well earned hernia repair plus the chance for more adhesions. So he Scheduled a colonoscopy to look at the top of the pouch a month away! Geez. PLEASE HELP US!!!!!!!

    Anyone who knows the problems I’m talking about knows that this is a critical situation that will take a top notch jpouch doc to fix this up. If not its just a matter of time before something bad gives.
    My great father is the biggest fighter I’ve ever seen , most people would have gave up many issues ago. But he wants to Live. Me and my Mother have been by his side thru the entire nightmare. We have documented EVERTHING that has gone on, in notebooks. I have the CD from the Barium contrast test with all images from last week. We’ve tried all simple remedies that I am aware of.

    Please Please Please someone help. My Dad is the anchor for all of us. I understand we all live and die but the amount of suffering I’ve watched my dad go thru is unimaginable. We need the Best or directed to the best with a swift/Quick appointment. We can not just go in to the ER for more surgery that isn’t defining the problem and destroying work that was so hard to get right. Any info is greatly appreciated.

    I did just secure an appointment with Dr.Bo Shen on dec 15th. I hope its not too late.

    Does anyone know anything about pouch prolapse?

    Or any helpful emails would be greatly appreciated.

    Please contact me with any Advice.

    Thank you so much for reading I know its long but its been a long six years for us.
    Positive Thoughts
    Nathaniel Freedom VanHoose
    Nathanerx7@aol.com
    614-332-4060
    Columbus , Ohio

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    Daniel Reply:

    My thoughts and prayers are with you and your family during this difficult time.

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    Terry Reply:

    Nathaniel, every father should be so lucky to have a son as caring as you. Have you considered taking him to, or at least discussing the prolapse with, Mayo Clinic in Rochester, Minn? (NOT one of the other Mayo locations) I was there for my diagnosis and they have seen so many really complex cases they they may be your best bet. (I say that knowing of the excellent reputation at Cleveland Clinic.) My insurance covers second opinions – perhaps his does also? I will join Daniel and others in remembering your father, you and your family. Terry

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    Nathane Reply:

    Thanks you guys.
    Means alot not to feel so alone.

    I have got everything set up at the clevlend clinic for dec 15th. Dr shen is supposed to be a pouch god? they are trying to get everything set up for one day to completely diagnose problem. Its some hope.
    Dads making it on a liquid diet right now and actually gaining some wieght back. probably from absorbing more in the small bowell as its dumping in the pouch so slowly.
    I will use the Mayo as my back up??

    Hey im all ears.
    Thanks for the thought and prayers. Same to ya.
    Nathane

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    Terry Reply:

    Nathane, I’m glad to hear your father is set for December 15th. Please let us know how he is getting along after the appointment and what Dr Shen advises. It’s good to hear that he is gaining some weight back now!

    Take care.

    Terry

  247. avatar

    Merry Lynn Guy says:

    December 27th, 2010 at 9:20 am

    So pregnancy and scar tissue. It seems as if I may have quite a bit of scar tissue built up where my ostomy use to be. I’d really like to try for baby number three (2 prior to last years wonderful surgeries) but wondering if people have had issues with pregnancies due to scar tissue. Also wondering about hydration and nutrients for both mommy and baby. Seems as if it is easy for us j pouchers to get dyhydrated I am curious how the body does or what others did during pregnancy. Thanks. ML

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    Lisa Reply:

    ML–I’ve been wondering the same thing since I would eventually like to have a baby or two. From speaking with my surgeon, he mentioned that he’s never had any patients who had trouble having babies after the surgeries but, because of the scar tissue, they had to have a c-section. He didn’t mention anything about hydration or nutrient issues which I would also be concerned about and I would also like to hear if anyone has heard anything about these issues and preganancy.

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    Merry Lynn Guy Reply:

    Similar to what my surgeon said. He said some people may need help after the surgery getting pregnant but that many women both with j pouch and ileostomy go one to have babies. I know when they did my step one he noted that they spent the first hour or so just getting through the scar tissue from two prior c-sections. And yes having a third would be via c section. No biggie.
    I just know that I have already gone to the hospital several times for dehydration and so if there is a little person in me growing just how much more likely is it that I will need more hydration than what I need now.

    Any j pouch preggers out there please connect with us.

    Thanks.
    PS. I know everyone is different but sure would be nice to understand.

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    Lisa Reply:

    Sorry ML, I hadn’t heard you were having such bad dehydration problems. I know I’m deyhdrated pretty much 24/7 but I haven’t had to go to ER for it, at least not yet. Have you tried talking to a nutritionist or anything about the nutrients and dehydration? I have been meaning to go but haven’t set up an appointment yet. If anyone else has info on this as well, please respond. Thanks.

  248. avatar

    Linda says:

    January 5th, 2011 at 3:20 pm

    Hi all, just when I thought I was all alone I found all of you. I am a 55 yr old female with rectal cancer, it happened so fast It is all a blur. The one thing I thought I could handle was the bag. I think if I was helping someone else it would be easier. For some odd reason I am not emotionally prepared to keep emptying this bag, nor prepared for how time consuming it is. My bag fills up completely in about 45 mins. I find I stay so close to home and sometimes just dont leave. I am wondering if anyone had the same thoughts as I did. Cancer is a hard one to take, let alone this bag. I know I should be more positive, but I am experiencing rectal spasms, even thought 85% of my rectum was removed, and I feel weak. It has been a month, shouldnt I be feeling much better by now? Thanks for any suggestions and good luck to each and every one of you. \

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    Michael R Reply:

    Hi Linda – I had my entire colon removed, and I’m assuming you had the same along with the rectum? I know it took me a long while to recover, since pulling out a major organ is a pretty traumatic adjustment for your body. I think the important thing is to ask yourself if you feel better than last week and not focus on how you feel overall. If you are still improving, then I would preach patience. As for your busy bag, are you taking any anti-diarrheal medications or fiber to slow the progress of food through your digestive system?

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    Linda Reply:

    Thanks so much for your response Michael, it really does put things in prespective the way you are looking at your progress. Yes you are right, I am better than I was a week ago……It is funny, I never stopped to even think about it in those terms. I can remember how awful it was after surgery, and having an ng tube shoved down my nose. Yes I am truly much better. No, at this time I am not taking anything for the bag filling problem, but I see my surgeon on Friday and will definately bring it up. Thank you again for your letter, it really helped me and I see that I do have support in this forum. Take care, Linda

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    Daniel Reply:

    Linda, I read your message and felt compelled to respond. You are so strong. I agree with Michael R and wonder why you are not on “real” pain medication??? These can slow your digestion as well and relieve pain. I am not a fan of these meds, but I am no Hero either, God made them for a reason. As for the bags, I always recommend contacting all suppliers and ask for a free sample. I struggled with a good seal and Nu-Hope was my saving grace. Best wishes to you and your family.

    avatar

    Terry Reply:

    Linda, I am a 64 year old male and had my colon and most of the rectum removed due to colon cancer two years ago and I am getting along pretty darned well. But the first 6 weeks were just the pits. Hang in there – it DOES get better. I still get spasms occasionally, and they do hurt but they go away. When people ask how I am am, I remark that I’m fine and still above ground. I hope they think that’s a good thing! :) Really though, it doesn’t matter how I feel – I just convince myself that this is better than it could be. Terry

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    Linda Reply:

    Thank you so much Terry, and yes I suppose at this time after my surgery it is difficult. They all keep telling me I had “major” surgery, and yes I know that but I have had surgeries before, and serious ones, but this one I cant seem to bounce back from…….or I am not allowing myself the time to. I think I feel a bit useless right now and emotionally a bit in shock with the cancer etc. I am trying not to throw myself a pity party, I just am very thankful that I am here and I should be able to deal with everything considering the alternative.
    Thank you again and I wish you all the very best. Linda

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    Cynthia C. Reply:

    Hi Linda,
    I wanted to write you about my experience with the bag. i chose to have a permanent ostomy because i didn’t want to deal with surgery again and i didn’t want to go through the process of my digestive system getting used to a jpouch. Plus, i was worried about complications and pouchitis. Anyways, i’m not going to lie- it was VERY emotionally hard the first maybe two, three months dealing with it. When i first had to change it, i was totally disgusted and terrified at the same time. My hands would shake like crazy! I couldn’t believe this is where my life had taken me. Everything happend extremely fast. But finally after a while, i had to make a decision to change the way i thought about the bag. I finally realized that this little bag saved my life. it also resulted in me not having colitis anymore and gave me my family time back! All i wanted was to play with my toddler again and be with my family. I still sometimes look at the bag while naked in front of the mirror and can’t believe it’s there! it’s just like this sudden attachment to my body i never even knew would be a part of my life. My husband was a great help too, in changing the way i feel about the bag because he finds me just as attractive as before. I empty mine out everytime i can. I don’t like anything in there. Are you emptying it every 45min while sleeping as well? I hope this helps a least a little in getting your mind used to this new idea. I know it sucks, but in the end it is saving your life! Best of luck with everything you are going through. It takes a strong person to get through all of this and it sounds like you’re one strong woman.
    take care,
    cindy

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    Linda Reply:

    Hi Cindy,
    First let me take this tme to thank you so very much for taking the time to write me. I can’tthank you enough because I totally relate to everything you wrote. Yes I suppose I can say I am thoroughly disgusted and suprisingly not able to handle this emotionally. One thing you have to know about me, I have worked in the medical field for years, and I thought I’ve done and seen everything. When it came to myself……I couldnt get up the strength to empty the bag(I was even seeing my rx meds whole in the bag) I am still not good with this. My transit(time it takes to digest, is to fast and therefore everything I ingest goes directly into the bag, in most of it’s original form) When it comes to changing the bag, well…………I shake also, I get so worked up that after I am done, I have to sit and try to get back to myself….by the time that occurs, it’s off to the bathroom to empty again. I’m up all night, it’s so annoying. As you stated, I think I am trying to change my mindset and be grateful that I am alive. My husband was also very, very supportive, but I just can’t let him help me or see me at this point with the bag. He was present in the hospital when the ostomy nurses were showing me how to do things, and he shocked me. I know things will change, it has been a month and they are all telling me that I am too hard on myself, but I am telling myself “why can’t I get through this particular surgery and obstacles….I have always bounced right back from many surgeries, but this one is so much more mentally challenging I suppose. Again, thank you so very much for your words of support and I wish you all the very, very best and you enjoy that toddler of yours, they grow up way too fast, take it from me…My toddler is now 27, lol.
    Linda

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  249. avatar

    Terry says:

    January 6th, 2011 at 9:47 am

    Linda, I felt useless too for the first 6 weeks, so I think I understand. Then I really bounced back, and started to exercise more, which accelerated my physical progress. Getting off the pain meds made a world of difference for me. The bag thoroughly grossed me out at first but I finally got used to it. I’ve had a j-pouch for about 20 months and am still adjusting to it with fewer and fewer accidents. As to the cancer itself, are you still dealing with it? (i.e chemo, radiation?) Good luck to you as you get through this. Terry

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    Linda Reply:

    Hello Terry, useless isnt the word! I can’t wait until I can feel like a productive person again. Believe it or not, i only took pain meds in the hospital(pump) and havent had to except for maybe Ibuprofen. The biggest part of this all is the “bag” I literally can’t face emptying it, and today I changed it and got very anxious. As for the cancer, well I have an appointment with a good , well known oncologist today at 2pm, I am taking a few pair of extra ears so I wont miss a thing. I am hoping for the best but in the back of my mind, I still have trouble thinking about did it go through the walls, if they did get it, what is the reoccurance rate? Should I go through treatment even though they say the treatment is worse than the cancer it’self? Alot to think of. How are you doing Terry? Are you cancerfree? Have you gone through Chemo, radiation etc. We are close in age and yes I have all the aches and pains of a person my age, but I will tell you, I will never, ever complain about that again, not after this. Thank you so much for writing again. I will let you know what my oncologist proposes and if I am totally confused afterward.
    Take care Terry!!! Linda

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    Linda Reply:

    Hi Terry, well I did see my Oncologist and it was quite an experience. He was awesome in my eyes and of course I have nobody in his field to compare him to, I felt extremely comforted by him. He assured me that because my cancer is a T2, and he went over the path report in front of me with the pathologist and my surgeon, that no treatment at this time is warranted. I was elated to say the least. I will have to go every 4 months for a CEA and cbc, he also said that at anytime I may ask for a PET scan and he will write a script for me. Of course I will always wonder about reccurrance and if or when, but for now I have still alot to deal with. I am praying for an uneventful and speedy recovery from the reversal. I am seeing my surgeon today to talk to him about this bag filling up so very fast and to see when he may schedule my reversal. I want to thank you so very much for your constant support and caring. It meant more to me than I can say. Also I would like to point out that the words Chrons and colitis were very prominent in the path report and operative reports. Did you experience this as well? Linda

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    Daniel Reply:

    Chrone’s and Ulcerative Colitis, though treated the same medicinally in most aspects, are very different diseases. I was diagnosed first with Chrone’s due to a familial diagnosis, but was only tested for a true diagnosis pre- and post-operation (easier to validate when the infected colon is out of the body on a table). Praise God, my diagnosis was Ulcerative Colitis. Alas, the difference, Chrone’s impacts the entire GI Tract, starting with the mouth and down to the anus (scary). They tend to not perform J-Pouch procedures for people with Chrone’s due to the potential for recurrence. Ulcerative Colitis is commonly focused within the colon or first wall of the large intestine. The JPouch removes both the colon and large intestine (they become just the colon at this point) and uses the small intestine because of the rarity of UC in the small intestine. With that said, I don’t know if it would be beneficial for you to know your true diagnosis. These two diseases present on a wide scale and you were treated for cancer. Best wishes.

  250. avatar

    Terry says:

    January 6th, 2011 at 10:38 am

    Linda,
    Good idea to take those extra ears! I did that too. I hope your oncologist gives you good news today. Please post what he says because this group really does care. I was very fortunate in that the colon removal took all the cancer with it. An oncologist confirmed it, so no further treatment was necessary. But I was nervous about seeing him until he gave me the good news. Enough about me; we’re all thinking good thoughts for YOU! Terry

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    Linda Reply:

    Awww, Thank you so very much Terry and everyone on this wonderful site. I truly am so very thankful that I found you all, you are all so wonderful and yet dealing with your own problems. I pray for all of you, and I thank you Terry for your kind and compassionate way about you. You seem like a very special person indeed. I am nervous, very nervous,, wont lie, but I will think positivly and just know that what ever the outcome, I will deal with it, especially with all the support from this group. Take care al, thanks again Terry and I’ll let you know on he flip-side, lol. Linda

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    Terry Reply:

    Linda, For some reason, this reply is out of sequence but I saw your last note about the oncologist visit and the extremely good news about your not needing further treatment. Congratulations! Don’t worry about the blood tests; I get them every 6 moths or so as well and they keep coming out just fine. The docs are just being very cautious which is to their credit. Yes, in addition to the tumor, I had ulcerative colitis but no symptoms for years. The only post-op difficulty I’ve had are two very painful bouts of blockage, caused by scar tissue. That makes me very cautious about what I eat but I’ve had no problems since November, so seem to managing it OK. I don’t want to spend any more time in a hospital bed! One other outcome (for me anyway) is that my weight is pretty easy to control after the surgery. I weigh 4 pounds more than when I left the Army in the 60’s…although I may have to put the old uniform on upside down, thanks to gravity. Again, congratulations on the excellent news! I hope you can relax now and get out and enjoy life!
    Terry

    Terry

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    Linda Reply:

    Thank you so very much for your good wishes Terry, most of all thank you for being there to listen and lend your point of view as you know first hand. I am heading back soon for the reversal and not sure about the recovery time for that. It can’t be as bad as the resection. Hey Mr. USA, first of all thank you for your service to our country, and I bet you were and are a fine looking veteran.
    Thank you for everything and I will still be in this forum for some time to come. The colitis issue for now is in the back of my mind. I feel like I received a new lease on life and I am going to try to make up for 58 years of making a big deal out of the small stuff. Take care my friend and feel good. Linda

  251. avatar

    Mark Eastabrooks says:

    January 6th, 2011 at 11:02 am

    Hi everyone, I hope the Holidays were good for all as you all were in my prayers. It has been seven months sense my reversal and I am still having trouble controlling a BM. I really appreciated the kind and reassuring words from my last posts but I am getting a little scared. Some say that can take up to two years for the neo-rectum to mature and start functioning correctly, has anyone herd the same thing? Anyway, does anyone think that I could still recover from this point and maybe get back to running and other activities again? Thanks again for any input.

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  252. avatar

    Terry says:

    January 6th, 2011 at 12:01 pm

    Hi Mark,
    Good to hear from you again although with regrets about the BM control. My experience was somewhat similar, although the control continues to improve some 20 months after getting the j-pouch up and running. (so to speak!) Keep doing those kegels to strengthen the muscles. How frequently are you having uncontrolled BMs? To your question, and only based on what I’ve experienced and read, I’d think that you will improve by quite a bit and be able to be more active. One thing you might consider in the interim is to wear Depends when you go out for a run. They are not as comfortable as just underwear and may chafe a bit but may enable you to be out for longer periods. I wear them when I fly because when I fall asleep, the muscles tend to relax. I wear normal underwear over them so if I do get caught with my pants down, they’re not so obvious. This last part is just psychological but I do not like my wife seeing me in those things, thus the underwear as a cover. One other thing: you might consider seeing a naturopath versus a GP for ideas. I haven’t done that myself but I imagine they might have some other ideas that could help you. Good luck to you and let us know again how you’re getting along.

    Terry

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    Mark Eastabrooks Reply:

    Hi Terry, thanks for the prompt reply. My BM’s are not that frequent, about the same as they have always been my whole life. Maybe once or twice a day but the thing is, I can’t stop it when I need to have a BM. I can tell that it is coming but I can’t stop it, and sometimes I keep going for as much as two hours or more until I am finished. I feel great and I want to run and go to the gym but I am afraid to as I would probably have an accident. I do wear depends all the time and I still tend to stick around the house. I know my surgeon did a great job as my anastomosis is right at the end and I am in no pain and very little discomfort. I am only 50 and still feel that I have a lot of life left in me and I want to get on with it. It is a weird feeling Terry, I can’t even control passing gas, when it wants to come out it just comes out no matter how hard I squeeze. I do my kegel constantly and I know the mussels are strong down there but it does not seem to help. Not sure what is going on.

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    Terry Reply:

    Mark, it sounds like you are doing the rights things. I take Beano when I consumer things that are gas-producing such as dairy products, alcohol, sugar, broccoli, etc. It helps quite a bit. The problem for us pouchers is that gas often pushes out bm as well. I forgot how long you’ve had your j-pouch. My surgeon told me it can take 2+ years to get really adjusted. That reminds, me, are you in Portland? I might be thinking of someone else but thought I’d ask. I had mine done there at Providence by Roy Breen. Great guy.

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    Mark Eastabrooks Reply:

    Hi Terry, no I live in Harleysville Pa. About 35 miles north west of Philadelphia. My surgeon said that I don’t have a J-pouch, he called it a neo-rectum. I thought it was the same thing be he said that is different. Not sure what the difference is though. I am very thankful that the good Lord let me live through this and I really shouldn’t complain but this condition really effects my live and my marriage. My doctor was Dr. Marks at Lankenau hospital in Philadelphia. They say is the best there is at removing these low rectal cancers while preserving sphincter function.

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    Mark Eastabrooks Reply:

    Hi Terry, it has been awhile sense we have talked. I hope the holidays were good for you and your family. I was able to talk to my surgeon a couple weeks ago and I learned some new things. I have a straight anastomosis and not a J-pouch, he said that the end result is the same without the possibility of infection in the adjustment period (I hope he is right). Anyway, I have had a bad week or so and I don’t really believe that I have any more mechanical control than I had six months ago. This is discouraging to me and I am very scared right now. I live in Depends day and night. He said that I am just in the beginning stages of “potty training” and that it could take more time. What do you think Terry; I know I am being a bit redundant, I guess I am looking for some encouragement. I want to get better so bad; I need to go back to work full-time, and right now that is just not possible. Thanks for your input Terry

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    Mark Eastabrooks Reply:

    Hello Terry, it is Mark Eastabrooks again. I am still struggling a bit with control. I was able to talk to the surgeon and he said that he removed my entire rectum but he made me a “neo-rectum” and that it would take time to adapt. I had a temporary ileostomy and I was reversed about ten months ago now. I know we have spoken before but I really need some help. My surgeon says that he preserved my sphincter muscles but I still can’t stop a bowel movement. He says that it is probably nerve damage and that the inner sphincter should start to work in time.

    Please, can you give me any information about this condition and do I have any hope of every becoming continent again? I do my kegel exercises every day for over a year and no matter how hard I squeeze I just can’t stop even air from coming out. Any words of encouragement or information would be greatly appreciated.

    Very respectfully,

    Mark Eastabrooks (USN, ret)

  253. avatar

    Terry says:

    January 6th, 2011 at 8:14 pm

    Well, that’s nearly as far from Portland as one can get in the US. Anyway, I really hope things turn for the better for you. I like your good attitude about being thankful. That always helps. But I’m sure it is not easy for you. I’ve done pretty well and I still have “those days” and certain limitations, so I can only imagine how it must be for you.

    When did you have the neo-rectal surgery?

    Take care, Mark, and keep us posted, please. People do care.

    Terry

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    Mark Eastabrooks Reply:

    My surgery was December 7 2009 and my reversal was mid June of 2010 so it has only been seven months sense the reversal. I think I am doing alright considering how low the cancer tumor was. It was only 3cm in from the anal verge. I was very lucky and it turned out to only be a stage I tumor and the path report said that is was very low grade and did not involve any of the lymph nodes and was contained pretty well. Not sure what all that means but I am told that is very good and should result in a very low re-occurrence rate.

    Mark

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    Terry Reply:

    Hi Mark. Good to hear from you! I tried to pull up your note to reply to it but it doesn’t show up, so I’ll reply to an old note but will address your current (Feb 9) question. The types of surgeries and our new internal equipment alway boggle the mind. But you and I do have a similar problem regarding incontinence although yours is regrettably more severe. Don’t hate me for telling you that I just returned from a 100 mile non-stop drive without any problems. Even went for a swim after dinner. On other hand, I went through 3 Depends at the hotel last night. I mentioned before that my days are fine but nights are not. But my 3 docs (surgeon, GI specialist and primary care doc) all tell me that it will get better – that the body is adjusting and “learning”. So you and I are getting the same advice. That’s good. What’s unsettling is how $%^# long it will take! I’m at about 18 months since my take-down.) I am going to schdule a visit with my GI specialist to see if he has any diet or excercise Failing that, I have an account at Mayo Clininc and they offer on-line consultations for a fee, so I may try that service or go out to their Rochester, Minn clinic for a face-to-face (or face-to-rearend?) consultation. I wish I could tell you more, and I really feel for you. But that’s all I know. Oh, one thing my surgeon suggested I might try (and have not) is a prescription of Tincture of Opium. Apparently it isn’t as scary as a that may look. I hate prescriptions, take nothing now for anything except for the over the counter Immodium. So the idea of anything with the opium word scares me. (If he prescribed martinis, I’d be all over it!) Let’s continue to stay in touch and share ideas. And perhaps other readers can chime in. I always value the input and the genuine helpfulness that the group provides.

    Hang in there Mark. Terry

    p.s. Just remembered to tell you that I was in hotel sauna a few weeks ago and I guy pointed at my gut, then at his and we had the same surgery. There are a lot of us! His English wasn’t so good but I gathered that he still has problems at night but it’s getting better after three years. That’s encouraging.

    [Reply]

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    Terry Reply:

    Mark, I didn’t find a reply button on your note of a few days ago, so I hope you find this. Apologies for the delay in responding. I had some computer problems but it’s working OK now. My take-down was 24 months ago, and I continue to have nighttime accidents although they are not quite as frequent, nor quite as messy. I sense that improvement is happening – just very slowly. My doc said the same thing about nerve damage – that it takes time for it to heal. Part of our slower recovery may be a function of age. I turned 65 yesterday, and was 63 when I had the takedown. It seems natural that the body heals more slowly as we get older. I wish I could offer you something more encouraging than this but I really think our situations will improve over time and they we have to wait it out. I have very few daytime accidents although I continue to wear some protection (pads) in my briefs. I plan to ride my bike again soon and I will likely put on some Depends until I know that I can ride without making a mess. How are you handling the diet in term of the kinds of foods you eat? I am pretty careful but I still indulge occasionally, although I try to restrict sweets, gassy producing foods (fatty food, beef among them) carbonated drinks and caffeine. It helps me maintain my weight better too. One thing that may cause your daytime accidents could be gas which is quite a propellant! Control the gas, and you may control when and where you have bowel movements. Beano helps me and I chew 2 of them immediately before I eat anything that might cause gas. Do you maintain a daily log of bowel movements? I stopped but I kept one for quite awhile so I could track progress. It helped me see the frequency was reducing over time and encourage me that there really was some good change. My surgeon was really pleased when I showed him the data. It helped him with his evaluation and it put me in a better mood to know that things were gradually getting better. I’ll be traveling for the next 2 days so if you reply, it may take me until Thursday to get back to you. But we need to continue the dialogue. Best to you, Mark!OK:

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    Mark Eastabrooks Reply:

    Hi Terry, I hope things are going good for you. I am leaving for about six weeks on the 10th of June to go home to Spokane to do some fishing with a couple of my old high school buddies. I am doing OK but I still cannot stop an unwanted BM. It will be one year since my reversal on the second of June. Terry, do you think that my nerves that control what is left of my inner sphincter will begin to work again someday? If they do, I think I have a shot at better control in the future. My surgeon said that his patients report that they continue to improve for three or four years after the reversal. I hope to start running again this fall and begin putting my life back together. I am only 50 and I think that I have a few good years left in me. If you would like to respond to me directly, here is my email address: autumneagle@verizon.net. Good to talk with you again.

  254. avatar

    Terry says:

    January 6th, 2011 at 8:51 pm

    Ah, that might explain your situation, although I am not familiar with neo-rectal surgery. I did some look up a few minutes ago but the articles were written as formal papers by physicians and are complex. But I’ll read them later. Gee, it seems to me that you are making pretty good progress considering that your reversal was done fairly recently. Mine was about 20 months ago and each month I make subtle improvements. I still have some night-time accidents but the frequency and volume continue to diminish. You might ask your surgeon or primary care doc to confirm this but I think you may need to exercise more patience. Something that helped me has been to keep a log of bms (separating days from nights). Each month, I calculate the average number of bms and accidents and run an average on them. What I found to my great pleasure was an encouraging declining trend line. My wife laughed at my doing this and said it was just like me to do that. (She suspects that I keep an Excel spreadsheet on our sex life as well.) But it helped me to see the improvement which is so incremental that I wouldn’t notice it without keeping the chart. Best to you, and as my very kind primary care doctor says, “Be strong”. …and in your case, stay in touch.

    Terry

    [Reply]

  255. avatar

    Linda says:

    January 7th, 2011 at 3:27 am

    Daniel, thank you so very much for your letter . I’m not as strong as I used to think I was, but this is no time to be a martyr either, is it? I was on some pain meds when I first came home, about 10 days post-op, believe it or not they only believe in vicodin for something as major as the surgery we had. I chose not to take it for many reasons and did ask for something else, even Loratab, but no dice. I think I failed to say that at the same time they had to repair a ventral hernia, at any rate I thank you for the info on the meds slowing digestive system, I am seeing my surgeon today and will insist on something be done about having to change a full bag every 45mins to an hour. The fact of the bag right now is more emotonally draining to me than the pain. Thanks again. Linda

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  256. avatar

    Linda says:

    January 7th, 2011 at 3:33 am

    Daniel, I almost forgot about telling you the facts of my seal. I use all Hollister products, echoseal, coloplast wafers, convex bag etc. They failed me so miserably a couple times, then we found out that the flat (where the stoma comes throught) was not good for my type body, very embarrassing and mentally challanging. Now if this darn bag wouldnt fill up the way it does, I am sure that is the biggest problem for a secure , no worry seal.
    Thank you again for your good wishes. Linda

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  257. avatar

    Linda says:

    January 7th, 2011 at 6:23 am

    Daniel, my true diagnosis is still invasive adenocarcinoma of the rectum. My diagnosis was lways cancer. I’m just saying they put so much into the path report, you get to thinking too much. I’m not going to get upset because those two diseases were mentioned. I believe it is the “potential” of getting those in the future. Right now I will deal with the present and do the very best that I can.
    Thank you. Linda

    [Reply]

  258. avatar

    Kera says:

    January 7th, 2011 at 8:40 pm

    I was diagnosed with FAP when I was 12…had my colon removed a few months after diagnosis. I had the temp. ileostomy and had take down 3 months later. I’m now 28, my daughter is 12 and is getting ready to have her colon removed on the 19th of this month. Does anyone know if there is a support group or individuals in the Portland Oregon location? I would like to have her talk to someone that has gone thru it more recently than I have….and I myself would like to connect with someone with simular issue as I have questions about things I’m going thru now and would like to compare notes.

    [Reply]

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    Linda Reply:

    Our situations seem to be almost identical. When I had my first surgery only the permanent ileostomy was the choice. My son will be having surgery leading to
    the j pouch before the end of 2012.

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  259. avatar

    Amy says:

    January 7th, 2011 at 10:42 pm

    Hi everyone. I’m really glad I found this site. It’s like finding “others like me” so to speak. I know no one who has been through what I have, nothing like it. Many years ago I started having bouts of diarrhea and severe stomach pains. A colonoscopy revealed a burrowing ulcer so I was put on meds and told to have follow up colonoscopies yearly. The ulcer was healed but the two following years polyps were found. I also suffered re-occurring diverticulitis. Three and half years ago at the age of 37 I suffered a mini stroke that, thankfully, left no visible after effects……we thought. Suddenly I went from someone who has chronic diarrhea to someone who was constipated!! My GI doctor started prescribing laxatives..ran no test. This went on for 3 months and to the point my stomach started getting severly distented and my family and co-workers started getting concerned. Finally my primary doctor said enough and sent me to a surgeon and after tests we learned it was Ischemic bowel (my colon was dead). Her only explanation was it was paralyzed by the stroke!! My colon was removed immediately but she she connected my small bowel directly to my rectum (new procedure she said). I had a great recovery..adjusted to life as best I could. Back in September (4 months ago) I started having trouble having bowel movements..having to push to go. Well, anyone without a colon knows that means life with constant diarrhea. That went on for about a week and a half then the pain started and I ended up in the hospital with a blockage. My connection at the rectum had narrowed off and caused damage. This time I was insistant about the doctor who was going to do the surgery so a Colo/Rectal Surgeon (Dr. Dobson, he’s so wonderful !!) ended up having to remove part of my small bowel, 3/4 of my rectum and I NOW have a JPouch. Three years and one month after my first surgery. My recovery from this surgery was NOT as easy as the first and now 3 months later I still have pain. My diet is a LOT more restricted now than it was before. My family, friends and co-workers are very supportive..but as I’ve read from many on here, it’s not the same as support from others going through the same.

    [Reply]

  260. avatar

    Linda says:

    January 8th, 2011 at 5:54 am

    Amy, hi, you couldnt have found a more supportive, compassionate group to air your frustrations, concerns or just to vent. We have all been through something that isnt pleasant at all, some may be worse than others, but to each and every one of us because it is our bodies, it is the worst!!!! I feel for you because you are so very young and I hope that a solution will come your way soon. There is nothing worse than constant pain, and nobody knows what you are feeling except you. Please take care and visit us frequently.
    Linda

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  261. avatar

    Merry Lynn Guy says:

    January 11th, 2011 at 7:36 pm

    Anybody else get this? Pain of what feels like a pulled muscle in the area of your backside (and please excuse me for the lack of knowledge here but we’ve heard worse) right above the top/start of your plumber’s crack. Oh can’t believe I just said that.

    Ok so the reason I ask is because I get it quite often and I always think oh my is my j pouch being ripped from my backside.

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    Kanaka Reply:

    You mean above your tail bone? Yes..I get that pain off and on. I googled and saw some stretches which have helped me, provided I do them everyday. They are cat stretch in yoga, the snake position and I do not know what the name of the excercise is, but in this you contract your vaginal muscles as if u r holding your peepee.
    Hope this helps.

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    Chris TW Reply:

    I get that too! I had my colon and large intestine remover in Jan ’10 and my reversal in Aug ’10 and have been on antibiotics since Oct ’10, I would be on them for 10 days then off for ten then I get that pain there and soon after get sick sick sick. We thought it was pouchitis, but I had a Upper GI and lower bowel (barium beverage) just today and the technititan said it looked as if there was a diverticulum off my jpouch! To me it looked like my pouch had sprouted an arm, very weird. My images are going to the surgeon to look at and I’ll get back to you when I know more. 

    [Reply]

  262. avatar

    Michael R says:

    January 19th, 2011 at 8:13 pm

    Hi all- I’ve experienced my first bout with pouchitis. I went to see the doctor and he put me on some antibiotics. While it’s slowed my output from my pouch significantly, what does come out is still very soft and covered in what looks to be mucus. I’ve been on the antibiotics for a week and a half now and am still having this happen. The movements are also small, not full size or very narrow like I had when I was suffering from UC. Has anyone experienced anything like this before? I was curious if anyone had stories about how long it took them to get over their pouchitis the first time and if this was normal. I’m nowhere close to where I was before and I’m kind of confused about it. I’m not sure if the antibiotics could be the source of any of the problems, since I’m on a pretty high does (1000mg of cipro a day). Thoughts and experience would be appreciated!

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  263. avatar

    Emily says:

    January 19th, 2011 at 9:48 pm

    Hi Michael, I have had about three episodes of pouchitis since my takedown in August of 2009. It took me a good two weeks on Cipro to get it under control. To regulate output and prevent future pouchitis have you tried double strength VSL#3 probiotic? It supposedly is the best thing for us j pouchers with a tendency to develop inflammation. When I am good about taking it…it really helps me. Hope you feel better soon!

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    Michael R Reply:

    Thanks Emily. I’ve never heard of VSL before, but I’ll try it out. I am getting better, I just didn’t think it would take this long on the antibiotics to recover.

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    Christman Reply:

    VSL worked really well for me and I have not had pouchitis for quite a while now (knock on wood).  The only draw back is that it can be pretty expensive, I have started eating an Activia yogurt everyday instead and it seems to help a lot.

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    Terry McCall Reply:

    Michael, if you have Costco in your area, you can order VSL through them at a lower price than through the VSL website. I used some this Summer and paid Costco $63.60 for 30 powder packets versus $86 plus shipping on the VSL site. I also paid $38.80 for 60 capules (for travel) versus $52 plus shipping. I took the printed VSL website info to Costco and they used it to order and had it for me the next day. As Christman said, it’s expensive and even with the Costco price it’s pricey but if you’re going to try it, I hope this helps. Terry

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    Michael R Reply:

    I don’t have a costco near me, but I’ll look into that. Do either of you have a recommendation about whether the packets or pills seem to be more effective?

  264. avatar

    Terry says:

    January 20th, 2011 at 12:06 pm

    Michael, there may be other “big-box” stores than can do the same for you. I imagine the packets and capsules are equally effective but I can’t say for sure. I took them not because of pouchitis but to see if they would help regulate my bm’s. That didn’t work so I stopped taking them. My surgeon recommends VSL, though, for pouchitis. Good luck to you with getting through it.

    Terry

    [Reply]

  265. avatar

    aj says:

    January 20th, 2011 at 11:16 pm

    Hi i just happened to stumble across this website and find it very helpful! I have had my jpouch for several years and still have to use the washroom at the very least 5 times a day. This gets hard on road trips, at work ect. My doctor has had me on lomotil for 3years I find it makes me very drowzy. My question is if anyone has any other medication I could use. I’ve heard people mention immodium does it work, and if so how much should I take. Im a small girl weighing 115 lbs. I know that there are certain foods that do cause you to have more frequent bms but I find I cant always be on a limited diet.

    [Reply]

  266. avatar

    Terry says:

    January 21st, 2011 at 9:13 am

    AJ, I’m glad you found this site; it’s helped me a lot too. I had been taking Lomotil but at my pimary physician’s suggestion, I stopped and it had no detrimental efffect. Now I am reducing my intake of Immodium, am down to 4 (2 at bedtime and 2 more about 4 hours later),and again no adverse effect. My goal is to get off it completely soon. When I refer to no detrimental or adverse effect, I mean that my nightly accidents have not increased as a result of taking fewer meds. I still have about 1 to 2 accidents most nights which is very frustrating. But the meds don’t seem to be the answer. My docs feel that 4 to 6 bms daily are about normal for us “pouchers.” I do very well by day if I eat something starchy, like sticky rice at breakfast, drink only a cup or 2 of coffee (no more), take Beano before eating gas-producing foods like milk, brocolli, etc. I’ve had some very painful blockages so I eat conservatively in terms of types of foods. I travel around the US for work quite a bit but can usually find something to eat that works. Back to the Beano, it helps. I am reluctant to bring out the package in front of others, so I keep some in little zip-bags that my wife gets at a craft store. If I pop a couple of those before eating with others, they probably just assume it’s medicine. I hope someone small like you replies to your note as well because their perspective may be closer to yours. I’m a tall male at 224 lbs. Good luck to you. Terry

    [Reply]

  267. avatar

    Niro says:

    January 24th, 2011 at 1:14 pm

    Hello everyone
    I’m considering going for a pouch and have lots of questions. So pleased I’ve just found this fabulous site. It’s really helpful! I would be really grateful if you could take a few mins to answer the questions below if you now have a pouch after a period of time with a previous ileostomy (loop or end) 
    Did you have liquid output with the ileostomy? If rarely or never, I’d like to know this too
    How frequent was this (once a week, once a month etc)?
    Did you experience this quickly after eating?
    Did this change after your J pouch was up and running? If so, how? If not, how does it effect your pouch now?

    Sorry for all the questions. I’m just wondering what the difference would be between output going into a pouch and a bag
    I’m sending lots of thanks in advance to those of you who take the time to answer these questions

    Niro

    [Reply]

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    Terry Reply:

    Niro, that’s a big decision and one I hope will work for you as well as it did for me. I had a loop ileostomy in July 08, with 2 more procedures to follow, resulting in the takedown to a j-pouch in May 09. Yes, I had quite a bit of liquid output with the ileo, a few times daily but it was very manageable. I don’t recall it happening quickly after eating. My j-pouch works well, sometimes with a liquid stool but often more the consistency of mashed potatoes. That’s a diet issue. I hope this helps. Sorry for the short reply but I’m getting ready for an early morning flight and need to get back to preparations. I’ll be back in the office on Friday to follow up if you have additional questions. Good luck to you! Terry

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    Michael R Reply:

    Hi Niro,
    I had a lot of liquid output from my ileo. It mainly happened when I drank sugary drinks (tea, soda, etc) or ate spicy, greasy foods. I kind of took advantage of the situation and indulged in a lot of food I didn’t get to eat with colitis. I haven’t had very much in the way of liquid BMs from my pouch at all. You don’t realize that you have extra intestine left after where your ileo comes out that will thicken things up, as well as the pouch and pills you can take to slow down your digestive tract. My output is thicker, almost like a regular BM.

    [Reply]

  268. avatar

    Niro says:

    January 25th, 2011 at 1:43 pm

    Hello Michael and Terry,

    Many, many thanks for taking the time to reply to me. I really appreciate your help! It seems like output can be watery with a loop ileostomy but great to hear that things firm up with a J pouch, depending what you eat. Your experiences both sound very positive, which is wonderful to hear. 

    My concerned is that I had watery output with an end ileostomy previously (before having an ileorectal anastomosis, which hasn’t worked out due to inflammation in rectum). I’ve convinced myself that the sometime watery output means that if I go for a J-pouch and remove the offending rectum :) that the pouch will be problematic. To be honest I’ve had a rough time with urgency and frequency so rather afraid of having a poor pouch that fails (and the poor QoL that goes with this). As you say it is a really big decision to make.

    Any thought would be most welcome

    Thanks again

    Niro

    [Reply]

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    Terry Reply:

    Greetings Niro,

    Apologies for taking some time to reply. I’ve been traveling in the midwest and slogging through some snow to get to my clients…and waiting for runways to clear so we could either take off or land. I wish I could help you on your question but that is way beyond my knowledge area. I can only suggest that you continue to form your decision with as much good information as you can get. And that is exactly what you’ve being trying to do. If you have good insurance, second opinions are usually covered, although travel expense is not. I went to Mayo in Rochester MN for my second opinion about the colon cancer diagnosis and the best way to treat it. I gave me tremendous peace of mind when I decided to go for the surgeries and ultimately the j-pouch. You may want to pursue your question in a similar fashion if you can. Please stay in touch and let us know what you decide and how it is working for you. Terry

    [Reply]

  269. avatar

    Kera says:

    January 29th, 2011 at 1:40 am

    Can anyone help me? My daughter has FAP (Familial Adenomatous Polyposis) she is 12 yrs old and just came home today from having her colon removed. We went in thinking we were going to do the J-Pouch but 12 hrs later found out that our daughters polyups went all the way down thru her anus and that in order to remove all the cancer causing polyups our daughter would either A) have a perminant ileostomy or B) have no feeling as to when she has to go to the bathroom. Has anyone out there had to deal with this? Do you know of a possible procedure that can be done that maybe her surgeon is unaware of? Any help would be greatly appreciated.

    [Reply]

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    Merry Lynn Guy Reply:

    Kera, did you use a colorectal surgeon or a general surgeon? I will pray for your daughters recovery. ML

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    Kera Reply:

    Merry, we used a colorectal surgeon. Thank you for the prayers :)

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  270. avatar

    Nick says:

    February 6th, 2011 at 4:45 pm

    I’m new to this site. Someone was nice enough to tell me about it. I had my first surgery in November and my final surgery a few weeks ago.Things have been going good except for the “but burn”..I am going really frequentley hoping it will slow down like doc says. I’m really worried though, Ive noticed bits of blood when I go to the bathroom. I had colitis and used to loose so much blood, I’m scared it will happen all over ago. Is this common after final jpouche surgery? Its just that theres been no blood for weeks and now all of a sudden I notice a little every time i go for the past few days

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    Merry Lynn Guy Reply:

    Nick, I had passed blood after the takedown. it was weeks after and it concerned me. My surgeon mentioned that it is often dried blood from surgery being passed. Of course when it passes it looks very similar to what we may have seen with UC and can scare us. I was checked out and all was well. I would mention it to the doctor and get looked at. It’s work the call. Hope you continue to do well. The body adjusts to the burn. ML

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    Michael R Reply:

    Hi Nick – I had the same situation. If the blood is bright red, it may be hemmorhoid irritation due to the butt burn. I was also told that taking anti-inflammatory drugs could cause bleeding too, including over the counter NSAIDs. If it’s large quantities of blood, I would definitely see my surgeon. If it’s just little trace amounts when you wipe, I would keep an eye on it but not get too worried. My doc also mentioned what ML said about the dried blood, so if the blood is of a darker color that could be the cause. Any blood in larger quantities should be checked out by your doctor.

    [Reply]

  271. avatar

    Terry says:

    February 6th, 2011 at 5:57 pm

    Nick, I have no experience with that but I think you should call your surgeon.

    Terry

    [Reply]

  272. avatar

    Nick says:

    February 7th, 2011 at 1:04 pm

    Thanx guys, I called surgeon and his assistant called me back to say that its probably hemeroid related and not to worry.it is bright red so I am a little worried, i dont see doc again ’til march.thank you guys

    [Reply]

  273. avatar

    Terry says:

    February 7th, 2011 at 1:19 pm

    Glaad to know that. Good luck to you.

    Terry

    [Reply]

  274. avatar

    Casey says:

    February 9th, 2011 at 5:18 pm

    HI EVERYONE!! I was wondering if you guys could share any experiences with Remicade if any. My mom is sick and trying to avoid surgery and will be starting remicade soon. Any advice or evperiences woul dbe greatly appreciated. THANKS
    Casey

    [Reply]

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    Nick Reply:

    Hi Casey, I had tried Remicade over a year ago and it didn’t do anything for me,but my doctor spoke very highly of it and said that it works for a lot of people.I hope it works good for your mom

    [Reply]

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    Michael R Reply:

    Casey, I tried remicade at one point too and it didn’t work for me. It did make me get sick easily though. My GI doc said the success rate was only 25% or something in that area and I was one of the unlucky few who it didn’t work on.

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    Marianne Reply:

    Remicade was my last resort before surgery and it didn’t work for me. My mom gets Remicade for her RA and it works great for her. Hopefully it will work for your mom. Best wishes to her

    [Reply]

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    Lisa Reply:

     Hi Casey.  I was on Remicade from June, 2006 until 4 weeks ago.  At first, it worked very well;although, I was never in remission from uc.  After a few years, my body figured out how to work around it.  As a result, my infusions became more and more frequent.  Most recently, I have been going every 4 weeks, and it is not working very well.  I recently decided to have surgery.  I feel like I only delayed the inevitable.  My surgery is scheduled for March 22nd. I feel relieved that I will be free of uc.
    I hope it works better and for longer for your mom!

    [Reply]

  275. avatar

    Merry Lynn Guy says:

    February 10th, 2011 at 9:12 pm

    One year ago yesterday I had my take down. Man time flies when you are not occupied with the worries/concerns of pending surgeries. Life does go on. Click on my blog to see how I reflected. Share my site with someone you that may be walking in the shoes I did last year.
    ML

    [Reply]

  276. avatar

    Anita says:

    February 11th, 2011 at 8:39 pm

    Is there a website or list of experienced “j Pouch” surgeons for the United States? Or doesn anyone know a CR surgeon or gastro doc with experience in the Hobbs, New Mexico or Midland, Texas, area?

    Anita

    [Reply]

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    Terry Reply:

    Anita, I’m not aware of a list but I recommend that you pursue this through major cities, where j-pouch surgery is performed as a routine. As I recall, there is a good center in Houston, and I’d think Dallas would be fine too. I strongly believe that you do not want to go to a surgeon who does this kind of surgery occasioanally. Good luck!

    Terry

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    Anita Reply:

    Terry, I’ve already had the “j pouch” installed back in 2003 but know if I move I will need access to someone who has experience with pouches to supervise any type of abdominal surgery (i.e., hysterectomy) on me if necessary. Thanks for the location recommendations, it’d just be nice if an experienced CR doctor was a little closer. Anita

    [Reply]

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    Terry Reply:

    Anita, I agree that it would be nice to have someone closer than Houston! There may well be someone closer that has the right experience but often the specialists are in the big hospitals which are usually in the big cities. Isn’t it something that we have to think about these things! I really want to do so more of as my wife calls them, Indiana Jones trips. I’m used to exploring jungles and ruins and I want to do some in South America but that may not work because of the what-ifs. So I may restrict myself to places that are at least a chopper flight away from good medical care. My wife thinks a luxury cruise might be in order while I’d rather take a small raft down the Amazon. She may win. Good luck to you on your search and your potential move.

    Terry

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    Mark Eastabrooks Reply:

    Hi Anita, I am still getting used to how to use this blog so I apologize in advance if I have posted in the wrong place. Anita, it has been nine months sense my reversal and I still have little control over BM’s. I saw my surgeon a few weeks ago and he said that I have a straight anastomosis and not a J-pouch because he says the outcome regarding control is about the same at the two year mark and there is fewer complications associated with the J-pouch. I hope he is right because this control thing is really getting me down. I like to drive home to Spokane a couple times a year and that is about 2800 miles and I live ever mile of it, but it might be challenging if things don’t improve my late May. Anyway, the surgeon thinks it is a nerve thing that will resolve over time. I have no rectum except the “neo-rectum” he made me, do you think there is a chance that it will eventually begin to act as an area of low pressure like my old rectum was? I am really stressed right now, thank you in advance for the help and input.
    Here is my normal email: autumneagle@verizon.net.

  277. avatar

    Nick says:

    February 12th, 2011 at 5:10 pm

    Hi guys, Thanx again, The bleeding decreasded a lot…Let me ask..I had my takedownJan. 3rd so its been more than a month, I feel like I have to go so often. Theres always rumbling or feeling like I have to go. Hemeroid sensations because I feel like its always “right there” wanting to come out.Does this all get better? Or are usual nightly accidents and constantly feeling like I have to go day and night for life? Its just so depressing having this lifestyle all the time.

    [Reply]

  278. avatar

    Taylor says:

    February 12th, 2011 at 5:32 pm

    Nick, 
    It gets much better. It just takes sometime. What you eats make a big difference as your pouch grows and begins to work. My takedown was in May and on a good day I am at about 5 a day. The only time I have night problems is when I drink wine to close to bed time. Also I tried not to eat after 630 in the beginning and that help a ton.  My surgeon told me it could take  year before it was more normal. Good luck! 
    Taylor

    [Reply]

  279. avatar

    Nick says:

    February 13th, 2011 at 6:56 pm

    Thank you Taylor. I am eating less.I want so much to put the weight I lost back on. I’m listening to friends tell me I brought this on myself with all the overeating, protein shakes and binging to put on weight”muscle” over the years.Im eating healthy, no alcohol or junk. 5 times a day sounds amazing. Im glad your doing so good.I know it could be worse too. I’ll still not understand why they dont do colon transplants.

    [Reply]

  280. avatar

    Gianna says:

    February 26th, 2011 at 6:31 am

    Need some help….I had my colectomy back in December and am having my takedown in April and wondering if it would be crazy to plan a vacation to Disney 3 months after this. Will I be able to control my BMs all the time or will there be times where I will not be able to leave the hotel room??? Thansk so much!

    [Reply]

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    Michael R Reply:

    Gianna – everyone’s body reacts differently, so it’s hard to tell how quickly you will adapt. For instance, some people mention control issues, but I’ve had total control from day one. After three months, my body had adapted well enough where I could’ve made the trip. If you could, you should think about pushing it back a little longer just to see how your your body is adapting to the changes.

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    Terry Reply:

    Gianna, I agree with Michael’s comments. My surgeon told me of a patient (a physician) who flew from Portland to Jordan about 2 weeks after his take down. That was gutsy but he did fine. Mine took longer. If you go, take supplies including some Depends. I used those for bike rides for awhile after my take down as a “just-in-case”….never needed them but I didn’t want to have an embarassing accident on the trails. Good luck!

    Terry

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    Kanaka Reply:

    Gianna,
    yes, you will have control starting day 1 (butt burning is another issue). I used benefiber, lots of water and calmoseptine to help me with the butt burn.
    You should be able to go on vacation, my only issue will be that will you have enough strength to walk there so soon after the vacation.

    Good luck!

    [Reply]

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    Gianaa Reply:

    Wow …thanks for the advice…I welcome more!! I dont know if I have much choice to put off the vacation…its all or nothing. I am happy though to hear you guys all did well with the control issues…I didnt even think of the energy I would need to walk..there is a lot of walking in Disney. The last time I was there I was petrified because my UC at the time was awful and I barely ate because I was travelling everywhere by bus. I am excited to go when I am healthy and free of the UC but maybe should wait.
    Another question I have is do you all think I am crazy to think I can go back to work 2 weeks post takedown? I am a teacher and have a bathroom right outside my room ( how convenient, I know)??

    [Reply]

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    Marianne Reply:

    I was fine 2 weeks after takedown. I was eating cheeseburgers and milkshakes trying to gain some weight back! I am 4 months post takedown and if I had a vacation planned right now I would be able to do it no problem. I still don’t quite have my energy level back yet but it’s getting there. You may have to use the restroom more often but there is no urgency (or atleast there shouldn’t be) and that’s the main thing. The nice thing about Disney is there is a bathroom every 3 feet and they keep them pretty clean. Good Luck!

    [Reply]

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    Michael R Reply:

    Gianaa – I think it depends on your job. I was off for 2 weeks following surgery and did half days for a week before returning to a full work schedule. I was exhausted the first month after surgery. Healing takes a lot more out of your body than you might realize. I have a desk job and the most strenuous part of my day is walking the two blocks from the parking garage into my building. I went home on my half days and ate lunch, then slept for three hours. I woke up, ate dinner, puttered around for a couple hours, then went to sleep for a full night’s rest. Your energy level will definitely not be at 100% after just two weeks, so thats something you will want to take into account.

    [Reply]

  281. avatar

    Terry says:

    February 26th, 2011 at 3:49 pm

    Gianna, 2 weeks seems awfully quick but I can appreciate that you want to get back at it to finish out the school year with your students. Good for you. I suggest you discuss this with your principal and ask that your return be open-ended. Could you try just half-days for a start? Having the bathroom so near is a real plus, though! I was out of the hospital 2 days after my take-down but I stayed close to the bathroom for a few weeks. Fortunately for me, I work at home and have a bathroom just around the corner from my office. I don’t need it so frequently now but I sure did then! Now I can drive or fly for several hours without needing a bathroom. You have my curiosity up, so please keep us posted as to your decison and how the take-down goes, Disney, back-to-work, etc. Best to you!

    Terry

    [Reply]

  282. avatar

    Nick says:

    February 27th, 2011 at 6:16 pm

    Not sure, how does one know if they have “poucheitis”?…If I go so often anyway since the takedown

    [Reply]

  283. avatar

    Kevin says:

    March 22nd, 2011 at 3:27 am

    Hi all! Im new to the site so wanted to briefly share my story and ask some questions. Im 22 and have suffered with UC for the last 3 years. i had my first surgery this last december and my 2nd take down surgery just 2 weeks ago. So far, living with the j-pouch hasnt given me any major complications but i sure do have a lot of worries. Going back to UC symptoms is soo scary…i know everyone says it gets better but i cant help but think it wont. Im just starting to get out and about now and during the day isnt too bad for me. I go to the bathroom every hour or so without any major urgency. At night is my problem though, im back and forth to the toilet non stop for a few hours and then i cant ever fall asleep. also butt burn and pain from trying to go is an issue. my mind races all night with my worries and fears from different stories ive heard about on here. I just want some reassurance i guess, or some tips on how to handle my new lifestyle now with the j-pouch. This all hit me so fast and i never imagined id be going through this…its given me a new outlook on life thats for sure. Well any help would be great or just someone to talk to. thanks so much!

    -Kevin

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    Marianne Reply:

    Hi Kevin, Everything you are experiencing is pefectly normal for being fresh from takedown. It will get better over time. Try to gage your progress in weeks not days. Also, don’t dwell on the negative stories you read about. The majority of people go on with their lives with no problems at all. I am 5 months post takedown and I use the bathroom about 4 or 5x a day. Usually I have to get up once at night. In the beginning it was a little crazy but after about a month everything started to calm down. My sister had this surgery 18 years ago and is doing great and she never had any issues with her pouch either. As far as the buttburn, get yourself an ointment called Calmoseptine. You can order it from Amazon.com or sometimes a Walgreens or CVS may carry it. It’s wonderful…very soothing. I love that stuff. My butt burn was way worse right after takedown…now it’s not so bad but I still like to keep the Calmoseptine handy. Good luck with everything…remember it does get better…just give it time. Surgery was the best thing I ever could have done. It’s so nice not to be sick anymore!

    [Reply]

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    Terry Reply:

    Kevin, I completely agree with Marianne. Don’t worry – be happy! I had my takedown in May 10 and still have a few minor problems but I do just fine…and I used Calmospetine this morning. Something I ate yesterday (perhaps some cinnamon which I didn’t know was in the pastry) burned me and I used the ointment. I’ve purchased it at Walgreens and the Safeway pharmacy. It’s fairly inexpensive ($7 or $8). If you can get it in the plastic jar versus the tube, I think you can get more out of it. Good luck to you. Check back in later and let us know of your progress.

    Terry

    [Reply]

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    Kevin Reply:

    Thanks all for the kind words! Its great to know theres so many others out there in the same boat as me. I will definitely have to track down some Calmoseptine and give it a try. Marianne said her sister had this surgery 18 years ago, thats another big worry of mine…how long will this last and will things fail in there over time. I know the surgery hasnt been around for too long, if anyone knows more about this that would be great! Kevin

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    Marianne Reply:

    Kevin, I really believe our pouches will out-live us! Hopeful thinking maybe? I have a follow up appt. today with my surgeon…I’m going to ask him that question since I never asked that before.

    avatar

    Daniel Reply:

    Kevin,

    It’s only natural to have worries. You have gone through a complete life change at a young age. You have to trust that you are on the road to recovery. You will start to see glimpses of progress here and there which should provide hope. Following my surgery, I would keep a log of food, medication and bowel movements. Soon, I began noticing patterns towards improvement, and you will too.

    I always recommend people request a Tetracain prescription from their Doctor. This is a numbing gel that helps with the butt burn early. Incorporating this with a staple like Calmoseptine and Immodium should help. Focus on diet early. You will be able to expand your food choices eventually, but give your body foods that are easy to digest, especially coming out. You are probably doing all of this, but reminders are always welcome.

    Your outlook is paramount to your successful recovery. Venting concerns on this site is helpful, so please continue. Lean on your community. Place your concerns with us, and remind yourself constantly that you are healing and healing is a slow process. Focus less on today and more on tomorrow and the days ahead. Your body is healing, even if you may not notice it as often as you would like sometimes. I think you are doing great.

    Respectfully in my prayers.

    [Reply]

  284. avatar

    Tim R says:

    March 22nd, 2011 at 8:57 am

    Regarding Calmoseptine: I got the 1/8 oz foil packets which are convenient to put in my pocket for use when I am not at home.
    I agree with the above. It does get better. I am at 11 months from take-down and doing pretty well. If I go more than 4-6 times/day or 0-1 times per night, I can usually attribute to something I ate.

    [Reply]

  285. avatar

    Terry says:

    March 22nd, 2011 at 9:25 am

    Tim, where did you buy the packets? I want to get some. Thanks!

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  286. avatar

    Tim R says:

    March 22nd, 2011 at 9:40 am

    I got mine from a sales rep I know, but you according to the website you can order it thru a pharmacy.

    the website is
    http://www.calmoseptineointment.com/
    under purchasing info click on “where to Purchase”

    Text from the site :
    “Most other pharmacies can special order Calmoseptine® Ointment through their supplier (wholesaler) and have it for you in 1 to 2 working days.Pharmacies may charge for special orders. Prices may vary from Suggested Retail Price.

    The chart below will explain to the pharmacy how to order Calmoseptine Ointment.”

    I did not include the chart but for $86 you can get 144 foil packs.

    The pricing may not be cost effective considering the amount of product, but the convenience is worth it.

    [Reply]

  287. avatar

    Nick says:

    March 22nd, 2011 at 6:28 pm

    I use Desitin extra strength for the butt burn.I get it at Walgreens. its AMAZING! ..Does anybody else have guarenteed nightly accidents when there on Ciprofloxacin?? I didnt have accidents at night for the the first month, and then it started once every few days, but since getting on Cipro to slow things down, it has slowed things a little, but multiple nightly accidents are a bit much

    [Reply]

  288. avatar

    Terry says:

    March 22nd, 2011 at 7:11 pm

    Nick, I don’t take Cipro or any prescriptions but I have 1 – 4 nightly accidents – my only problem since my takedown 10 months ago. I feel fine and am active but I wake up to find I’ve had an accident. I just don’t feel it happening. I try to have my dinner fairly early and that helps a bit. If you think Cipro helps, I’ll discuss it with my GI doctor. Aside from the overall mess and incovenience, I feel like less of man for having to wear Depends to bed. For the most part I just tough it out but I have to admit that bedtime is not something I look forward to. Your advice or that from others will be most welcome!

    [Reply]

  289. avatar

    Nick says:

    March 23rd, 2011 at 6:05 pm

    Hi Terri, Yeah, I was hoping that it would go away. I think the nightly accidents increased with Cipro. 10 months ago is a long time.I hope it stops for us both..

    [Reply]

  290. avatar

    Dawn McCurdy says:

    April 1st, 2011 at 10:26 am

    I will be going thru the reversal surgery on May 5th at the Mayo Clinic in Jacksonville. I have had an ileostomy since March of 2010 when I had my entire colon and rectum removed as well as 49 lymph nodes. At the time of surgery, the j-pouch was constructed. I am a little apprehensive about the surgery. Any insights or suggestions???

    [Reply]

  291. avatar

    Terry says:

    April 1st, 2011 at 11:02 am

    Dawn, we had similar surgeries although I have a small amount of rectum left and no lymph nodes were removed. My experience has been good, although I have accidents – mostly at night. I wear pads in my underwear by day and use Depends at night. I also put a sinitary bed pad on the sheet with a towel over it, then use another towel to wrap around my rear end. So if I have accidents, I toss the Depends, and perhaps have to wash the towel but I keep the bed clean. We use Folex carpet spray to squirt the soiled towels before washing them and they come clean. So much for hygiene. You will likely have “butt-burn” at first, and then occasionally, depending on what you eat and how your body reacts to it. Calmoseptine is my favorite and is commonly mentioned on this board. We buy it at Walgreens and Safeway and it is fairly inexpensive. Also see Tim’s March 22 comments (above) about foil packs for travel. You’ve probably been advised to eat small quantities and to have your last meal fairly early. I try to eat dinner by 5:00 although that is very difficult for me to do because of my business and social life. Beyond that, I have stayed active and happy, and I hope that will be your experience as well. Good luck to you on the next phase. Please stay in touch and let us know how you are doing.

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    Dawn McCurdy Reply:

    Thank you for your response and advice. I have ordered a bidet toilet seat as I understand those help tremendously with “butt burn”.

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    Nick says:

    April 6th, 2011 at 7:08 am

    I was just told that I have to stay on cipro regularly because I have chronic pouchitis, because Going the bathroom picked up so much right after I stopped cipro. Any other reccomendations from anybody with chronic pouchitis. I dont want to be on antiobiotics forever, and I started acidopilous a week ago and nothing

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    Jeff Reply:

    I have chronic Pouchitis for several years now. When it flares I take metronidazole (Flagyl) for 1-2 weeks that knocks it out. Then I able to go some time (weeks to months) before it flares again. I think that is better then taking it every day (which I did for about a year). I also make my own Kefir drink (you can also by it) that puts more of the good bacteria into my gut that the antibiotic kills. I do think that this helps since I can go serveral months without a flareup. I was able to use a suppository steriod that helped for awhile (since the doctor said the pouchitis was mostly in my rectum area). But it didn’t help the last time so I went on the meds again. The funny thing is I feel a difference within a day of taking them.

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    Nick Reply:

    Wow, Thank you Jeff..I’ll ask about the Flagyl, I still have it in my cabinet and its not expired,I’ll ask doc. I used to do the kefir milk. It tastes unbareable but hopefully the pomegranite flavored kefir milk from Trader Joes will be the same, i hope..lol. thank you again.

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    Shawn Reply:

    I just happened upon this site tonight. I had my reversal 21/2 years ago.1 year ago I developed pouchitis. I take VSL #3 double strength every morning. It is a powder I mix and shake with some cranberry juice and love it. Billions of the good bacteria the gut needs. Pricey but my insurance actually pays for it because of my diagnosis. The surgeon wrote. Rx for it. I am finally back to where I was prior to developing pouchitis so it has been a long haul but I won’t give it up. Look into it.

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    Kevin says:

    April 6th, 2011 at 10:58 am

    Hi all. Just wanted to explain msykes problems to get any information possible. I’m about 4 weeks post take down surgery now and was doing pretty good. The last 3-4 days though have progressively gotten worse. My bathroom trips have increased to 4-5 times an hour at certain times in the day, stomach seems to be constantly moving and rumbling and the butt burn has been bad. It’s like my UC symptoms all over except no medicine and I have a little more control. Just wondering if this is normal at this stage or should I be worried about things like pouchitis and such? Anything would help, thanks! 

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    Marianne Reply:

    If this has been going on for several days, I would put a call in to your dr. It sounds like it could be pouchitis. If it is…not to worry…antibiotics will take care of it. Or it could be something you ate that’s not agreeing with you but that shouldn’t last for 3-4 days. Feel better…

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    Jeff Reply:

    One thing that has also helped with the butt burn is CHOLESTYRAMINE POWDER that you mix with water and kinda taste like Tang. It is usually used to lower blood cholesterol levels but a side effect of it is to bind with the liver enzymes. A lot of the burning has to do with the body not absorbing an enzyme that the liver produces, which is very alkaline (thus the burning). The powder binds with the enzyme and prevents the “burn”. When I start to burn I now take this and the burn goes away. Also taking something like Imodium can help slow down the bowel and help with the frequencies of the BMs. Also it can take quite a while for you to adjust and somethings- like coffee still causes massive Diarrhea in me. I found that one of the metamucil cookies before my coffee can help to asorb some of the water.

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    Martin says:

    April 7th, 2011 at 12:42 am

    Hi Nick,

    I am in a similar position, having had pouch for over 10 years now and little or no problems with pouchitis, it suddenly went crazy last year and I spent 9 months fighting repeated doses of inflamation and pain.  The result was surgery for a fistula, which thankfully is now repaired.  Long term; however, the doctors are saying I may have to be on Cipro for life.  They also told me at last visit that they used to have a protocol which involved Cipro for 3 months then Metronidazole for a while (Flagyl) and then possibly VSL probiotics.  What they found was that use of the two different types of antibiotics had a tendency to increase the occurrence of resistant strains of bacteria.  They now suggest that I stay with Cipro or Flagyl and use VSL to balance out in the gaps between treatments.  Except that I find I can’t tolerate VSL so …. its Cipro for life !! On it for 6 months now at 500 mg twice daily – only noticeable side effect is a metallic taste in the mouth and a tendency to mild skin rash from time to time – which is far less trouble than the pouchitis.

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    Nick Reply:

    Thank you Martin, I tried VSL long before surgery but never noticed a difference.The last thing I want is resistent bacteria that wont quit. I wonder if anybodys found that they can do without cipro when on VSL

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    rebecca says:

    May 6th, 2011 at 10:06 am

    Hi Everyone. I had my Jpouch operation for FAP in 2008 with takedown 10 months later in 2009. During the 10 months i had the bag, i struggled more with my confident than with the bag itself. After my takedown, i have found no problems at all really, just get the occassional butt burn and wind but nothing. I am married now and trying for a baby. i was just wondering if this operation affects female fertility? I know if you suffer with UC it does but at time of seeing my surgeon regarding my operation back in 2008, he never really mention anything. I have been trying now for 6 months and due to see my new consultant soon as old one has now retired. If anyone could help or give any advice i would be most grateful. x

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    Taylor Reply:

    I had my 1st surgery in Feburary 2010 and the second one in May 2010. The doctor told me we could start trying in 6 weeks after the 2nd surgery. We tried and tried and tried and I gave up…then I got pregnant. It took almost 9 moths for it to happen. I remember being discouraged and crying and thinking it would never happed. Just keep trying. I will be praying for you!

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    rebecca Reply:

    thank you very much. When i spoke to my nurse that i am still in contact with she said she would book me into see my consultant, as he would be able to talk it through with me. i be 26 years old in July and me and my husband would love a baby soon. great to hear a postive outcome for yourself. i have been very lucky so far, not to have any problems from the operation. I feel the same as i do before operation apart from a scar down my stomach and my old stoma scar. After my takedown i struggled to get over what had happened but now am back to myself and stronger than i was before the operation. Just hope a baby comes for me too now. x

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    Marianne says:

    May 6th, 2011 at 11:04 am

    Hi!
    Your surgeon at the time should have gone over this with you before your surgery. I believe that it is a bit harder to concieve because of scar tissue. Was your surgery done laparoscopically or was it open surgery? If it was done laparoscopically, then you may have less scar tissue inside so it would be more favorable to concieve. I know just from reading that many women have babies with a Jpouch so it is happening. Just may take you a little longer. The first thing my surgeon asked me when I inteviewed him was do I have kids. Luckily I had my boys before I even go sick with UC. Wishing you the best and I hope it all works out!

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    Kanaka says:

    May 7th, 2011 at 11:16 pm

    Hi Taylor: Thanks so much for the hope.
    I had my surgery in 2009. I also had a HSG to confirm absence of any scar tissues and I was given green signal to try having a baby. We have now been actively trying 7 months now! I have a son and before I had my son, my issue was keeping the pregnancy. Getting pregnant was easy.
    Rebecca: We went through the surgery mainly because I wanted another kid and hence did not want to get on any remicaid or mp6 kind of meds. All our doctors told us that if surgery is done laproscopically and by a good surgeon, it should not be an issue. It might take time to conceive, but getting pregnant is not impossible. Gl! One thing that I do believe is that this surgery was sooo worth it! Good luck to you.

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    rebecca Reply:

    Thank you. i had my first operation done as open surgery not Laproscopically and with meds i dont need any has i got FAP and the operation was a preventable. i live in Wales UK and had the operation in Cardiff. At the time this was my best option to limit the risk to my health. the second operation (takedown) was done without opening me up. Whats the chances of problems with infertility after the Pouch operation?

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    Taylor says:

    May 27th, 2011 at 4:18 pm

    Help! Ihave had my jpouch for a year post take down. Suddenly this week I am having cramping ,some blood and the feeling of never quite being empty could it be the dreaded pouchitis? The otheruissie is that I am 17 weeks pregnant. Any suggestions? Thanks.

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    Emily Reply:

    Hi Taylor, It sounds like it could be pouchitis or maybe just your body adjusting to pregnancy. I would talk to your GI and OBGYN. I don’t think Cipro (which they usually give for pouchitis) is advised during pregnancy. I would try probiotics (VSL#3 is the best for preventing the dreaded pouchitis, as my drs. have told me plus it is safe for pregnancy). I hope you feel better and big congrats on your pregnancy! Take Care!

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    Nick says:

    May 30th, 2011 at 3:57 pm

    I love this site!..I wish I knew about it before surgery….Hopefully I can get advice..My takedown was 4 months ago. I go to the bathroom at least 15 times a day maybe 3 times a night..This sux…Its when I was on Cipro it was a little less, I liked Cipro and some of you might because there was no gas or bloating, and I think I went less because the j-pouche is kinda numbed on cipro, which is good during the day but means night time accidents…Off Cipro no night accidents but I go sooo much during the day, no decrease. …..I do and you guys might wanna try, At Whole Foods the sell flavored probiotic kefir milk drinks that taste great. Also the sell Kevva probiotic drinks that are kinda good. …So I’m all over probiotics, Im gonna order the vs-5 or whatever it is…but, What do u guys think? I’m stareing at the bottle of Cipro. I dont wanna take it. Ive been on it 2 months and off for a couple weeks, My stomachs bad when I’m off it, but I gotta get used to being off eventually right?? I cant stay on it forever

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    Daniel Reply:

    Nick, things will get better. I kept a record of my BM count each day for near a year. You’ll start to see that number go down eventually. For me, I would have days where my count would drop. As time passed, these days happened more often.
    I never used Cipro, but have been using Immodium regularly for over a year. I take more than the prescribed amount, but the Dr. says that it is okay.
    Please, somebody tell me where to buy VS-5? I have gone to all of the health stores, and they have no idea what I am talking about.

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    Nick Reply:

    Thank you..I went to vsl3.com a few minutes ago. $52 I think, and 2 day shipping was free..

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    Emily Reply:

    Hi Nick and Daniel, If you have a Costco nearby, they also have VSL#3 in their pharmacy and most of the time it is less expensive to buy it in bulk if it begins to work for you. I have also seen it on Amazon.com but I am not sure how the price relates. Good luck to both of you…I have had my takedown for a year and a half and the VSL really helps me, when I remember to take it! I do ok during the day, my problem is at night! Take care!

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    Katie says:

    June 1st, 2011 at 5:21 pm

    Just had my takedown surgery 7 days ago. My abdomen used to be somewhat flat, but it is now swollen. It looks like I am 4 months pregnant. How long will this take to subside? I only had swelling for a couple of days after my surgery, which was a much more serious operation….None of my clothes fit, and I am finding myself extremely depressed. Can anyone share their experiences? Thank you!!

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    rebecca Reply:

    hi Katie,
    please dont be depressed, this is normal. you are now using bowel that you havent used before or for a while. it all got to adjust and settle down. i was completely the same and it last for a few weeks but it will gradually start to go down if it hasnt already started too. i called my nurse a few days after i got home all upset and she explained that you will still have some wind and bloatedness for a while. if you are really worried than call your nurse/doctor and speak to them about it but i am positive all will settle down and return to normal.
    please let me know though how you get on though.

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    Nick says:

    June 3rd, 2011 at 7:59 pm

    Thanx Emily, I’m gonna have to try Costco, because Ive had a very noticeable difference in the past couple days. I only woke up once last night appose to the 5 times the other night..I’ll keep you guys posted..Anybody try the Kevita probiotic drinks from Whole Foods?..There great

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    Dennis says:

    June 13th, 2011 at 4:18 pm

    Hey Nick congrats on survival. I am a year and 4 months past takedown. VSL#3 is very good stuff. My questions to you are. 1.) still have a lot of liquid movements yet? 2.) how is your salt intake? 3.)high acid ouput stll? on and on…. There are a few key things I can suggest right off the bat. Soup and a whole tube of crackers. Baked potatoes. Carbohydrates slow down your system and allow your small intestine to learn to absorb. Limit the volume fluid you drink to 5-6 oz. but drink when you are thirsty. Not by a set schedule. whatch your salt and sugar input too both can go low very fast. Stop thinking about what you are eating and just eat. keeping in mind cause and effect. Everybodies system is different and day to day will be difeerent for each person. my suggestions i hope will teach you an experienced way to look at things. for you to learn ask me questions. hope top hear from you or anybody else. the first six months there are many ups an downs. A different perspective often will help.

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    Nick Reply:

    Thank you Dennis, I just saw my doctor a couple days ago and he was shocked that I’m going so much( 15 times a day or so, takedown wasJanuary).. Its down to 15ish because of the VSL I think. He gave me Opium Tincture to help too..Its more liquidy if I’m late taking the Medamucel and I dont take in to much salt. I’ll up the carbs big time, thank you. In the afternoon and night I’ll go every half hour or so.Does this sound right? My doctor said all his other patients are going much much less after 5 months. Thank you again Dennis and everybody

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    Dennis says:

    June 14th, 2011 at 3:30 pm

    Hey Nick, I have a question for you. Are you currentley taking multi vitamins? For me pills irritated my pouch and I started to take gummy vitamins instead. Try to get your carbs through food. Your diet will always be a dance. You will always be your best doctor living with your condition. What does your diet consist of anyway. I go about 8 times a day and that changes with the amount I eat to also what I eat. When I started out I was at least 12 times a day for a month and a half. How much fluid do you drink at a time? What type of liquids are you drinking? Does your stool still burn?

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    Kanaka Reply:

    Nick,
    Have you tried benefiber or any of the fiber supplements. They helped me immensely the first 6 months. Now I rarely need the fiber as the pouch adjusts, so u go only 6-8 times a day. Also, carbs defn help, along with lots of water.

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    Nick says:

    June 15th, 2011 at 4:40 pm

    I do the metamucill. All it does is help harden the conistency. it doesnt help me go less. I dont take multi vitamins at all. I’m getting chicken, steak and most everything from Whole Foods. I eat bagels, corn flakes from Whole Foods and waffles and organic chicken sausages for breakfasts. I eat salmon and other fish is fresh. I eat pretty healthy. I eat every few hours but Im not stuffing myself. I eat maybe 4 or 5 times a day, small meals. I dont want to wither away. But even on days when I eat less I still go so frequently.

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    Nick Reply:

    Oh…and I drink water, Whole Foods natural ginger ale that i open before I drink so there wont be any carbonation left…between meals I’ll drink probiotic juice but not every day by any means

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    Dennis Reply:

    Hey Nick, with my system I learned how my food digested because my illeostomy pouch was clear. Yes it looked terrible but it was the best teaching aid for my diet that I could ask for. I foud out that when I ate any meats that it turned to liquid. Raw vegetales barely digest at all. Cooked vegetable are much better. Fat like any other animal protien like milk also will liquify. I first started out eating chicken noodle soup and chunky soup with a bunch of crackers (one full tube!). Things started to slow down. By thetime my bag was going away, I had to actually squeeze the stool out of it. The biggest learning experience I had was when I had to go into the hospital the day after Christmas. I had dehydration even though I drank a gallon of water every day. Liquid in meant liquid out. It dawned on me laying in bed that my water intake was wrong. I started drinking water when I emptied my stool and to this day when I pass my stool. I do not drink alot, maybe 5-7 ozs. of water at a time. That seemed to change my system overnight. What also helped was that my salt intaked was higher so that helped my absorbtion of water. About six weeks after takedown my stool started to thicken again. I had tought myself a trick of how to eat. I eat my carbohydrate first, be it potato or bread. Carbohydrates tend to swell and don’t break down to fast in the digestive track. They also move slower. With that being in my system first, I can eat other things after and control the rated of food through my system by eating the carbs first. In general, food stays in my system for about six hours now. Before I figured out the carb trick it was more like 2 hours. By reducing my water volume intake, it forced my system to absorb it better. I have had great luck with pizza. AWSOME! Pop is out of my diet along with other highly sweetened drinks. When you drink them the stomach valve opens up to let the sugar right on by while the food stays inthe stomach.

    You should also try taking some multivitamins and calcium supplement…..gummy style! The organ you had to absorb minerals is gone. You will need to comphensate. Have you gone to your local doctor to get blood screens to see what some of your levels are? Your colon used to regulate much of you digestion speed. Try eating different foods on your own and see what they do. Learn cause and effect with your diet. Learning what to eat is as importent as how to eat food. Chew food well, sip your drink and plug the system up with carbs first to slow things down. Your body will adapt Sorry for flow of thought, just giving my exprience.

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    Nick Reply:

    I’ll up the carbs in a big way.Maybe a bagel before every meal. I’ll look into blood testing. Thank you Dennis. And I do love pizza..lol. I’ll also kick up the salt.

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    Terry Reply:

    Dennis & Nick,

    I’ve been following your notes and want to wish Nick the best of everything during this huge transition. Dennis, your suggestions are very helpful. I do fine by day but have 0-3 accidents at night, generally around 1 – 2, and it’s getting better. My takedown was in May 09, so 2 years. My primary doctor encouraged me to get off the Immodium complaetely, albeit gradually. I am now Immodoium-free and with no increase in frequency of nightly accidents. He thinks that Immodium causes the sphincter to be “lazy” and to not constrict. I don’t know if he’s right but I’m giving it a shot because I have a lot of respect for his overall approach to health. I push carbs but not in the same order you mentioned and I may be drinking too much water, so I’ll work on those two ideas. I maintain a low salt diet, but my blood pressure is good, so I will also raise the salt levels to see how that works. I’m amazed that you can handle pizza. Tomato sauces give me butt-burn. Big thanks for your ideas. One thing that people tell me often is that they are amazed at how healthy I look, and I feel healthy too. I stay very active and travel quite a bit for my business and I get along just fine. So Nick, hang in there, keep in touch with people who can help and keep that positive can-do view on life! Terry

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    Dennis Reply:

    My accidents at night are more sleep related. Too tired to wake up and go to the bathroom. Mine are more of just leaks. I deal with high acid in the morning and Prilosec helps a little bit. It more or less takes the edge off. This surgery is by all means a perfect fix, but it ias better fromliving with UC by far.

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    Nick Reply:

    Hi Dennis thank you for reaching out. I think back up alarms for “through the night” are a good call. Keep the morning alarm far away so you dont turn that one off by accident..lol.. My doctor had said the burning consistency was because my system was to alkalein or alcaline…I vaguely remember what he said exactly, but I bought oranges the next day. I dont eat them a lot but ask yer doctor. I wish my docs words were still fresh in my head.So ask yer doc or maybe somebody else on here knows what i mean. maybe the acid in citrus made my stomach less alcaline, I’m not sure..I cant with the immodium myself, it gives me headaches and doesnt work for me….When I was having the bulk of accidents at night I bought rubber surf shorts that I wore at night. There easy to clean and ya wont have to worry about the sheets or anything.

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    Terry says:

    June 17th, 2011 at 7:40 am

    My doc gave me some Prilosec recently and it helped. I’m off it now but will use if necessary. My symptoms did not feel like an acid problem…just took an antacid occasionally. But I had a lot of abdominal paid to the extent I saw the doc about it. The Prilosec and a limited diet really helped. He told me to avoid dairy products (I don’t use much anyway) and raw fruits and vegetables, eat small quantities 5-6 times per day.

    I think I will start using an alarm clock so I’ll go to the bathroom in the night. I tend to sleep right through. The clocks are a pain (especially for resetting when I’m drowsy)but we have a few ktichen timers than can be set for 3-4 hours and are easily re-set.

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    Dennis Reply:

    I often eat large quantities of oatmeal to flush my system when it is screwed up. Oatmeal seems to be very gentle and non reactive. I also do not take prilosec every day, but i will do a burst if I can not get my acid under control. My system is deffinately not perfect, but I think I have become predictable by learning how my body reacts and when,to what I eat. Diet control seems to be the best, It is imperitive to learn your system. You can only do that by eating and learning

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    Terry says:

    June 17th, 2011 at 3:04 pm

    Dennis, my doc says that the body continues to change and adapt to our digestive system, and the hearrtburn is a byproduct of that change. It should go away. But it’s sure nice to have an antidote when it crops up.

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    Dennis Reply:

    I have noticed myself that prilosec in short bursts tends to keep my acid down for a couple of weeks. I don’t get heartburn, I get butt burn. Acid can go out both ends and it seems prilosec works for both. Your body will constantly change and because of your condition you must learn the flags that will pop up, what causes them and the remedy. Soon as it seems you have figured something out, it will work for two to three week and change. Hopefully you will get a rythem figured out for your body. We are wonderfully complex and simple creatures. Often a difficult problem will onky take a simple fix. Watch and learn your body.

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    Dennis says:

    June 18th, 2011 at 3:29 pm

    Hey Nick oranges might cause you problems HIGH ACID. That will tend to irritate your pouch and make you go more. An irritated pouch can lead to pouchitis. I have found melon of all types works well because of it’s water content and it take less acid from the body to digest. My favorite drink was orange juice, now it just seems like pain to me now. High acid is a problem. Your small intestine was always meant to move acid along the track to the larg intestine to be absorbed. Not so for you anymore . The pouch and the latter part of your small intestine must learn to adapt and absorb the acid and food in a way the large intestine did. It will never equal the ability to adapt. Train your brain to learn your system. Like I have said, cause and effect. Things will change faster than you can see your doctor.

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    Hi folks says:

    September 4th, 2011 at 6:33 pm

    I am 50 yrs old and have had a j pouche for 18 yrs. My colon was removed due to a weight lifting injury. I felt a pop and stool took a long time to pass . after six years it turned into ulcerative colitis bleeding transfusions.. rebuild was three step because of i was tooo weak for anything else. No cancer during surgeries.
    Within the past yr my CEA’s have jumped to 40.. Ceas is a sign of imflamation or cancer. they have look biopsiied, PET, there is a golf ball size mass behind the rectum. biopsies negative, pet negative (although imflamation is there).
    will imflamation cause CEAs, to go that high. Other then the CEA, which my ocenoligist does not even use, I am fine excercise etc!!!!

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    Phoebe says:

    September 10th, 2011 at 5:59 pm

    Hi!
    I’m 3 weeks post-colectomy for UC, and am hoping anyone who’s had a colectomy (as part of a 3 step jpouch op — i still have a rectum currently), and anyone with the jpouch in general could help me out with a couple of concerns?
    Firstly, I’m finding that the UC inflammation and ulcerations still left in my rectum are giving me the frequent feeling of an urge to have a bowel movement, which I AM able to ignore pretty much all the time, and when I do pass anything it’s just mucus and occasionally blood. I asked my IBD nurse and she suggested mesalazine suppositories, but given how little these helped me with the UC pre-colectomy (hence the colectomy…), I am worried that this irritating problem is going to persist – does anyone have any experience with this that could shed some light here/ reassure me?!
    Secondly, I got the colectomy with the understanding that it would be the first step of a 3-step pouch formation, but am starting to wonder if I even want the pouch surgery at all. Despite the rectum issue I am already noticing the massive improvement in my quality of life, and further imagining how much better it can get once I have recovered fully from surgery. Also, I’m frankly scared sh*tless of getting the pouch surgery and reverting to a life dominated by my bowel’s demands! How long does it take to return to a vaguely normal amount of bowel movements? (I am aware that by ‘vaguely normal’, I’m talking about 4-8 times a day… a significant improvement on the 20-25 I was having pre-surgery). And importantly for me, once your body has fully adapted to the pouch, how long can you hold a bowel movement in for with the pouch? Does the need to go to the loo come on gradually or is it a sudden urge that you can simply hold for 15 minutes as opposed to not hold at all? All these concerns are seriously putting me off jpouch surgery. On the other hand, the stomabag has its inconveniences and given that I am still young (I turned 20 a week after the surgery), I worry that I’d be foolish not to try the pouch as I have decades and decades (touch wood) ahead of me to recover from surgery and reap the benefits, if they’re that great?
    Maybe half of this post was rambling… please forgive me if this is the case… still getting my head around the realisation that UC wasn’t the harmless, insignificant, totally manageable disease I’d convinced myself it was (yes, I was convincing myself of this even when I was having 10-15 bowel movements a day… it took vomiting during my bowel movements and sleeping on the bathroom floor before I finally relented and went to hospital). Either way, I have trouble discussing this stuff with my friends – bowel movements not the glamourous topic I’d hope 😛
    Would really appreciate any advice or help given!!

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    Michael Reply:

    Hi Phoebe,

    I just had my 2nd surgery (it was a 2 part) about a year ago. I remember thinking some of the same things you mentioned. I wondered if it might be better to just keep the bag, since it had made my life measurably better. Obviously, I ended up getting the surgery. After 3 months, I was ready to be rid of the bag. I was tired of changing it, worrying about leaks, and dealing with some of it’s physical limitations. While I felt a lot better, it was difficult to go jogging with the ostomy bag and I always worried that someone would notice or it would leak when I was out in public. I had a couple issues when I had my 2nd surgery, though not as bad as some others had. Even while I had the ostomy, I was still having leakage and bleeding from my rectum. After the takedown, I was worried about colitis affecting the part of my rectum that was left. I had a little bleeding and some urgency, but the ability to hold it. My body healed up in a couple months and I have very few, if any, problems today. (Other than butt burn and the same things everyone deals with) I’m happy that I can wear tighter clothing without worrying about someone making a comment, don’t have to worry about leaking, can exercise and twist and turn however I want, and don’t have to worry about explaining to a girlfriend what the bag is and why I have it. Now I just have to explain the scars. I can’t tell you whats best for you, but I had some of the same concerns, went through with the surgery, and came out happier on the other side. It wasn’t immediate, but when my body got used to the pouch, my life has been much easier.

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    Joy Reply:

    Michael,

    Any suggestions to help the butt burn.  My takedown was August 2011. I have an average of 8 bowel movements daily and have tried Vaseline, Calmospetine and Desitin. I put something on my bottom every time I go to the bathroom.  Also I spend alot of time soaking in the tub. There are days I had rather not eat because of having to go to the bathroom.  I think if I can get the butt burn under control I will  feel better.

    Joy

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    Kanaka Reply:

    Hi Joy,
    Saw your comment and was wondering if you have tried benefiber? I was like what you are going through, but benefiber helped me a lot. It prevent the butt burn.
    I now have raspberries, nuts etc for fiber, along with calmoseptin and VSL at time.
    Hope u feel better.
    Kanaka

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    Joy Reply:

    Thanks for your suggestions!!  This is a great site. When you live with the issue we know more than anyone about what helps.

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    Dennis Reply:

    Joy, First off lets deal with the initial burn. For me, Kanndoo wet wipes worked good because they are fairly wet. First I wiped with regular tp then I use a wet wipe. When was raw I then patted dry with a towel and used baby powder on my butt. Applied the powder on the tp then patted my butt. The burning is chemical AND moisture burn. DO NOT use a medicated powder!!! The medication made my sphincter relax and it caused a mess. The wipes remove the acid and the powder dries the butt. I use A&D ointment very rarely now. I can help you with diet knowledge on what causes high acid an tricks to teach your body to absorb more of it. Kanndoo wipes are at Target. I can tell you some diet tricks to help. First I used Prilosec for a month to help. Respond if you would like more help.
    My 20/20 hind sight might help you.

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    Joy Reply:

    Dennis, any suggestions you have will be greatly appreciated. What are your diet tricks?  Do you now do the same ritual  after each bowel movement?  I am doing something of the same except have never used powder or Kandoo wipes.  I do the ritual of first wet TP and then a wipe with aloe, then damp baby wash cloth to clean off the wipe wet blotting with all of these.  Then I use Vaseline or Desitin. If it is not horribly bad I will use Calmoseptine.  Please feel free to share any info.  Thanks. Joy

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    Dennis Reply:

    Joy, First of all I have two young children at home, that is why I use Kandoo wipes. I had tried pretty much all the other types but these seem to work the best and they are flushible. Buy the non-scented variety. They are PH balanced and work very well to kill the acid when using. They also seem to be the wettest wipes to buy. This is the first step, remove any acid from the area. Pat your butt dry with a towel and then apply baby powder. This step helps get rid of moisture. Moisture is just as much to blame for the burn. For tissue to heal, it wants to be dry. Just like dealing with a babie’s diaper rash. Since we are adults, we tend to forget how to deal with our own trouble. From my experience, do this every time until things get better. Around 4-5 days. This has to be your ritual until it gets better. Avoid the topicals for a little while. They help only when tissue is a little bit raw. Prilosec helped me get my acid level down until I started to figure out my diet. Sugars and fats tend to cause more burn. High acid foods will to. Any type of melon is awsome to eat and easy to digest. Another trick of mine is to eat alot of carbs. Chunky soup and crackers worked will with me as does hamburger helper with lots of bread and also tombstone pizza(pizzaria type tends to burn, too much sauce). Just eat and learn and figure out cause an effect with your body. Drink plenty of water, about 6oz. very often, but only drink when thirsty. This tends to force your new system to absorb mor fluid in you pouch. It took my body 9 months before things stablized with absorption. and another 9 to get my diet dialed in. Keep your salt and sugar levels up, that will help you feel better. Natural sugars from things like friut and honey are the easiest for your body.

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    Terry Reply:

    Phoebe, The reponse that Michael sent is very thoughtful and I hope it encourages your to proceed with the pouch. I very much appreciate that you don’t want to discuss this among your ferinds. Most of my friends don’t know that I still have problems, albeit small ones. A lot of how you do depends on your own physiology. And I think age has something to do with it as well, plus how much of the rectum you have left. I am a male and was 62 when I had my first surgery (due to mild colitus and cancer). I was not having any problems and had not since I was in my late 40’s. But the cancer forced the issue. So step 1 (colectomy with bag) was in 7-08, with step 2 (reconstruciton) in 1-09 and step 3, the j-pouch hook-up in 5-09. I do well by day but have some leakage but seldom any rush trips to the loo. I wear protective pads in my underwear. Embarassing for a male but necessary. My larger problems are at night. I tend to have an avaerge of about 2 bm’s in my sleep and don’t feeel it happening, so I wear Depends at night. Frustrating for sure but I keep improving. I travel around the country a lot as a consultant and have not had any embarassing moments. I hope none of this discourages you but I want you to have my facts. I keep getting better, am very happy (and lucky!) and would not want to go back to the bag. My surgeon said that some people revert to the bag later, so that is an option if you later find your situation to be untenable. Good luck to you! Terry

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    Tim R Reply:

    Hi Phoebe,

    Your story sounds so similiar in many ways to mine. I sometimes I wish I had the surgery sooner, but ultimately am still ok with my decision to wait until it was the last option. I too was so bad that at times that I opted to sleep on the bathroom floor and also did not talk about it with friends. By the time I went for the surgery my wife convinced me that I really needed to tell my friends. Most of the them were surprised that and did not know that I had it it or that it was that bad in part because when it was bad I became anti-social.
    I had the three part surgery, colectomy in Jan 11, 2010, j-pouch Late February, and take-down on April 26 (wife’s birthday :-( ). I am a 37yo male was diagnosed at 21 and had surgery at 35. The initial 5 years I was in a flare then 5 years off then back on again. Mine was severe enough that I could have opted for surgery during the first 5 years.
    To your first question: I too had some bleeding and mucus after my first surgery. That went away within a couple of weeks.

    To your second: I thought about keeping the pouch but ultimately decided to go on with the rest of the surgeries. As far as quality of life after, It is an astronomical improvement! I may be a rare case or not I am not sure either way I am very thankful that I have excellent control and don’t have issues with incontinence (much improved from the incontinence problem I had on the second day of a new job before I had surgery). Currently, I manage with immodium and metamucil and keep in mind which foods do what (i.e produce loose stool or gas). I can often adjust the immodium to compensate for the foods that I know cause loose stool. I am in the 4-8 times per day category depending on what I eat. I do deal with buttburn if it gets too loose. As far as time between movements: I went saltwater fishing on a boat this summer and did not have to go to the bathroom or have any control issues at all. I went to the bathroom before i left at 5:30 am and again when I got home at noon (I really had to go, but I made it). I went kayaking this summer with my wife and kids. I find that it’s about timing what you eat. For example, don’t have a bowl of mushroom and pepper soup, unless you know you have a bathroom handy for the next several hours. I sometimes have to go to the bathroom at night depending on when I have last eaten before I go to bed. I have no leakage issues at night. As far as the urge to go, I find that it comes in waves. They are certainly uncomfortable depending on the volume of gas or stool, but nothing like that pain I had with UC. Usually I can endure these waves and go to the bathroom when I am ready certainly 15 min to a couple of hours later.
    After the takedown surgery there is a time when you will have to get used to your new plumbing and that will remind you a lot of your UC days. Stay positive, it will get better. It goes away gradually as the j-pouch stretches out to its full capacity over the course of about 2 months if I remember right (Can anyone corroborate that?) . Then it’s all about adjusting to your new normal which is will be sooooo much better then the normal that include 20-25 times/day. As Terry points our everyone’s physiology is different and therefore responses will be unique, but at 20 years old you certainly have age on your side.

    As far as your time with the ostomy whether you choose to keep it long term or not, I’d recommend getting a belt (sometimes called a gunbelt) that helps beg the appliance in place and concealed. I used it after my surgeries and it did help.

    Rambling is fine. It means that you are thinking about this. Keep thinking. It is not an easy decision.

    The responses to your comment here are so insightful. Each one of us has their own preferences and tolerance for repeated surgeries, recoveries, hospitals, doctors, hospital-food, room-mates etc., so do make your own decision.

    If you want to laugh about ostomy appliances look up my previous comment on this page by searching for the word ‘dog’.
    -Tim

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  310. avatar

    cindy says:

    September 11th, 2011 at 6:28 pm

    Hi Phoebe,

    I had surgery for colitis back in January of 2010. I opted for a permanent ostomy with the option of a jpouch surgery at any point in my future life. I was so sick and on so many meds, I just couldn’t think of going back in to the hospital for more surgeries. My GI doc said if it’s not broken, don’t fix it! I also asked him how will I deal with a bag when I’m an old woman and he gave me the advice that it’s actually easier to handle it in comparison to “holding” your bowels with a jpouch. I am 100% happy with my decision to stay with the bag. I can eat whatever I want, do any sporting activity I want (i’m a big volleyball player, swimmer, and runner), wear whatever I want (bathing suits, sexy dresses) and never have to take meds again for this illness. The Jpouch surgery worried me for many reasons. I didn’t want to go through a long recovery process, I didn’t want to worry about avoiding certain foods, I didn’t want to have to take meds when a bout of pouchitis hits, and I especially didn’t want to be back in the hospital. I just wanted to start my life again. And that’s exactly what happened as soon as I made the decision to keep the bag. The emotional side of having a bag was difficult. But maintaining a bag has been no problem. As you probably already know, your body gets used to the ostomy right away. Once you get the hang of changing it (and it doesn’t take long) it becomes second nature. My husband is fine with it as well. Everyone who knows me doesn’t care either. I think a lot of people can’t face the idea of “the Bag”, but for me, I felt as though it was the best and quickest way to have a normal, healthy life. Whatever you decide, I wish you the best. If you decide to keep it, i’ve got a few tricks up my sleeve as far as clothing is concerned! Isn’t it wonderful to not feel sick anymore!!! Yeah! Good luck, cindy

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    Terry Reply:

    Cindy, that’s a very refreshing reply. If it works for you, that’s great.

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  311. avatar

    cindy says:

    September 11th, 2011 at 6:36 pm

    Hi Phoebe,

    I forgot to mention that the mucus and light blood is coming from the few inches of rectom you have left. It is totally normal. It will always expel itself, unless you decide to remove all of the rectum, but it will get lighter for the most part with maybe only a few heavier moments like when you feel you have to go. It has never caused me any embarrassing moments.

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  312. avatar

    Phoebe says:

    September 12th, 2011 at 8:43 am

    Thanks so much to all of you for your comments, these have been so helpful! Reading about people’s experiences immediately after the surgery (when it feels like they’ve reverted to UC) was really putting me off, as well as meeting a woman in hospital who was going back to a stoma after 7 years with the pouch. It seems though that most who’ve had the pouch and are a year or two down the line with it are ultimately happy with their decision, despite the few problems. I guess I have been focussing on what I’d lose if I got rid of the bag, rather than what I’d gain (I’ve been looking at a photo I took of my lovely clear abdomen pre-surgery, it’s bumming me out).
    Thanks for your comment, Cindy – I feel right now that odds are I’ll go for the surgery in the end, but it’s really reassuring to know that you made the decision to live with yours permanently and are really happy with it. It’s really amazing for me to see how much happier people who’ve lived with IBD are after surgery, whether or not they choose to live permanently with the stoma… I wish I’d read all this stuff before my surgery! (when I was terrified). Would still be very grateful for those clothing tips nonetheless! Still trying to figure out how I’m going to manage going clubbing what with the outfits and the alcohol…!
    With regard to the mucus/bleeding issue, as far as I’m aware I still have about a foot of rectum left inside me (they didn’t want to do anything too invasive in the first surgery what with the steroids/ infliximab infusion and with the severity of the disease at the time). A foot of rectum… does that sound about right?! I’ll keep up with the mesalazine for a while and hope that a combination of the medication and time will ease the problem.
    And hell yeah it’s great to feel healthy again! I sat through an entire film in the cinema and wasn’t scared. In fact, I’m going to the cinema again on wednesday… I think I’ll try not sitting in the aisle seat 😛
    So glad I’ve found this website :) Thanks so much for your comments!

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  313. avatar

    Terry says:

    September 12th, 2011 at 8:57 am

    Phoebe, if you get this twice, my apologies but I had a computer glitch when sending it. I never thought I’d refer to a foot of rectum as a luxury but it is! That should work very well for you. Keep up that positive spirit. I have a strong feeling that you are going to really thrive. Please let us all know how you’re doing.

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  314. avatar

    pam says:

    September 13th, 2011 at 11:50 am

    My dad just had his colon removed is it normal to swell up??

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  315. avatar

    Mark J says:

    September 16th, 2011 at 5:00 pm

    Hey all. I am 37, diagnosed with UC at 29. only had 2 flares in my life, but this last one has been a doosey!!. drugs taken: prednisone, asacol, endocort – all no real affect. currently taking 200mg Imuran and double dose of Remicade every 6 weeks – still no positive effect. so after long thought and research, I have opted for surgery October 13th at UNC Chapel Hill (Dr. Krouda).
    I thank you all for this site and all of the stories but to be honest I am still freaking out a bit inside. the site has answered so much, but still so much going through my head. What if I just wussed out and opted for surgery too soon? I am going 10+ times a day, but some of the story of post surgery still has trips to the bathroom of 6-8.. it that really that much better? I kind of wanted to die with all my original parts… I am sure I am going to whine and complain for a while during this ordeal. Am I going to give this horrible disease to my 2 year old daughter?

    I really do not have a question for you all, just glad to know there are people out there

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    Kanaka Reply:

    Hi Mark,
    These are valid concerns and all i can say is that I went through the same ordeal. I had a 2 year old too when I went thru this surgery.
    Now I am just sooo glad to have this surgery done. You will not miss your colon at all. The first few months after surgery will be challenging while your body adjusts, but in the end it will be worth it. I will be more than glad to talk to u if u like. Email me at kanakab at hotmail.com.
    Good luck
    PS: Do not worry about passing anything to ur daughter. IMO, life is too short to worry about what u have no control over. She will have a healthy life..just have the faith :-)

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  316. avatar

    Phoebe says:

    September 16th, 2011 at 7:53 pm

    Hi everyone – I’m just wondering if anyone here currently has or has had in the past a stoma that points upwards. If so, any chance someone can help me with my ileostomy problem… leaks? I’m fairly sure I’ve identified the issue as the fact that my stoma’s opening points upwards, so much so that when the bag is attached, the stools come out basically right next to the skin. I’ve got the bag fitting as well as I could possibly make it and am also using powder (to dry my skin out before attaching the bag) as well as one of those donutty seal things, and have even tried changing the brand of bag from dansac to coloplast. Nothing is working! My bag still lasts less than 24 hours. Has anyone every had this problem and found a solution??! x

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    Heidi Reply:

    Phoebe, what company are you using? Hollister? Are you using any additional adhesive? And are you heating it up before attaching to the skin? I used to use a hair dryer to heat up the glue, it saved me. Once I learned a proper seal I could wear a bag for up to a week and a half. I contacted the ostomy company and went to a private consultation. They were really helpful.

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    Phoebe Reply:

    I am currently using dansac/ coloplast bags – I think that’s what you’re referring to? I get all my ostomy advice and consultations with the NHS (am English). I do heat it up between my thighs before applying, but I haven’t tried additional adhesive – anything you can suggest?

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    Dennis Reply:

    What is you diet? If you are going high acid it will eat up the adhesion. Let me know some of your general diet and I can give you some general tips that might help.

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    Daniel Reply:

    I had these problems. I requested trial bags from every manufacturer and worked with my wife and stoma nurse to get more comfortable. I used Nu-Hope bags, but they only lasted a few days. The skin around the stoma is very very very important for the take down surgery. Sorry do not want to worry you, but my dr did not tell me this until I was confirming the next surgery. I had a lot of help and was very vocal about how uncomfortable I was. Keep up the good work.

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    Daniel Reply:

    Also, my stoma did this because my ab muscles were tight, per my dr. The muscles pulled and restricted proper function. Make sure you are cutting the bag properly too. Good luck.

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  317. avatar

    Lauren says:

    September 29th, 2011 at 11:38 am

    Recently decided to get a Jpouch, surgery coming soon…I’m blogging because all the blogs were so helpful in my decision and knowing more what to expect. Check it out, feedback would be great as I go through the process.

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  318. avatar

    Nurse says:

    October 3rd, 2011 at 2:07 am

    I am a LPN of 18 years and working a private duty case. A 25 year old female that has had almost 30 surgeries and currently has a perm ileostomy.She has had Crohn’s disease for years and an unhealing fistula for months. She is also a pain pill addict. Dilaudid, Fentanyl,  Oxycontin, Oxycodone, you name it. My question is this: Several times, in the wee hours, she has awakened me to do a total bed/bag change. There is copious amounts of liquid stool all over…clothes, bedding, carpet, etc. Is it possible that she NOT know that she is sleeping in her own stool or is it plainly just the pain medication keeping her so sedated that she’s unaware of her bag coming off and leaking all over? I am frustrated and do not want to sound insensitive or embarrass her, but I’m not sure how much more of this I can take. The total linen changes and room sterilizations (due to MRSA) are killing me and I find myself getting angry at her for seemingly being lazy. She is in total denial of the addiction and I am unable to convince her family that she should be in rehab. She is unable to be a mother to her 5 year old daughter and is blatantly disrespectful and rude to everyone that gives her care. She acts entitled and spoiled. It’s hard to get past the behavior to see the real problems and narrow down what is treatable and what just has to be accepted.  Please help me before I quit my job and leave her with less hope.

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    Dennis Reply:

    Yes the drugs will make here not aware of the bag leaking. At the age of twenty five, she should be learning to change the bag herself. My insurance covered for about six weeks of bag changes until I got on my feet from the surgery. Watch the diet, high sugars and high acid foods will cause the gastric acids to be stronger and eat away at the adhesion. Based on different stomas, each application will be just a little bit different. A clear bag really helped me watch and learn, and see problems before I leaked. It is her body, she must learn to take care of it. You are only a temp nurse assigned to help for a little while.

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    Mark Eastabrooks Reply:

    Hello, my name is Mark, I am 50 years old and I had a bag for seven months. I do understand what the 25 year old female is going through but there is little excuse for the total disrespect she is showing toward you. I would have loved to have someone to help me during my time with the bag – I took care of everything myself. I think that you have been more than patient with the lady and by continuing to put yourself through this I believe you should seek others to care for. You are not responsible for “her” hope. Her family could also help, and what about the others you have to forsake in order to care for this person who is taking very few steps to help herself. I have met many people of all ages that are very grateful to have the bag after many years of suffering with terrible gastrointestinal diseases. You are a very special person and there are so many folks out there that would appreciate your care and expertise. You don’t have to waste your time on someone who would rather do drugs than to help themselves. They should be thankful for what they have. Sorry if I sound cold, just my opinion. If you would like to correspond with me via normal email, here is my address: autumneagle@verizon.net. Good luck.

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  319. avatar

    Terry says:

    October 3rd, 2011 at 11:51 am

    Mark and Dennis said it very well. Being a patient is not always easy but neither is being a caregiver. I have a hunch this patient is the type would be difficult in most situations. You can’t win them all, so write her off as a bad experience. Having said that, I recall a very difficult patient in the room next to mine when I had my second surgery. He was obnoxious, demanding, profane and lewd to the nurses. I was amazed at their tolerance. Nursing is a very special profession … somewhere close to sainthood to me. But there ARE limits and I think this patient has exceeded hers.

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  320. avatar

    Steve says:

    October 7th, 2011 at 12:31 pm

    I was diagnosed with UC and went a year with medication treatment.  I then opted for surgery and my entire colon was removed.  It has been approx. 1 year since my surgery and I have had daily pain and bowel movements 10 times or more a day and they wake me up at night 3-6 times every night.  Until recently no one not even my surgeon could figure out what was causing these issues, but a GI i recently saw told me that i have a piece of colon still in my body left at my rectum so the dr. could hand stitch my small intestine back to my rectum rather than using staples.  Unfortunately due to the surgeon leaving this piece of colon in my body i was “RE-DIAGNOSED” with UC after i had surgery to remove my entire colon due to UC and how bad it was.  I am wondering if anyone else out there has experienced this or if i am alone as i have felt for the last year. Oh, and my GI dr. told me that my surgeon is highly skilled and likes to leave a part of the colon in the body so he can hand stitch it because it takes a lot of skill and technique to do this and he is known to do this in this hospital.  So i end up with UC because he decides he wants to hand stitch my rectum instead of staples.  Please someone tell me i am not alone, or if someone has any advise or if i can get surgery again to reconnect me the right way to get rid of the part of colon that is still infected with UC.  I have searched all over the internet for anything relating to my issue and i am unable to find any blogs or reviews or anything on this. 

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    Heidi Reply:

    Hi Steve,
    Just a little confused about what the doctors are telling you. I too went through that, do I or don’t I have UC after my colectomy. Here’s the actually story, as I’ve been told and makes sense, if you don’t have an ostomy, so J-pouch, s-pouch, etc., you do still “technically” have part of your colon and consequently UC. Your sphincter is part of your colon, so to be blunt, if poop comes out your butt, you have a sphincter and thus a really tiny part of your colon, about 2cm. Now with that said, don’t ever say you have a colon, because to most doctors you don’t, you have a sphincter. And yes that really tiny bit of colon has UC, but again most doctors, even GIs will say you can’t have UC because you have no colon. You with me? Now when you have a flare up with this tiny little colon it can be treated with antibiotics (really high dose). There is a name for this flare-up, but I can’t remember what, it usually happens a couple of times in the first two years after surgery.
    Now so you don’t feel alone. I had multiple surgeries too. My UC lead to a toxic megacolon and due to the advance stage of decay my staples fell out and the toxins spread into my whole body and put me into emergency surgery. (And I was never told the hand stitching was special) I’m coming up on 2 years since my last reconstruction surgery and I’ve had a rough go, I’ve since been diagnosed with Crohn’s too. But support groups are great and you’ll find the more you talk about IBD the more people you meet.
    Just remember, you are never alone.
    Heidi
    email me if you want to talk more
    heidiclarsen@gmail.com

    [Reply]

  321. avatar

    Shawn says:

    October 7th, 2011 at 12:45 pm

    Wow. I am dealing with going to the bathroom 18 times a day. Am in the process of trying to get into Mayo myself. Would love to chat. Email me at sabt@comcast.net. Maybe this s my problem. Who discovered this? 

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  322. avatar

    steve says:

    October 12th, 2011 at 6:24 am

    Heidi,

    I do understand what you are saying because they explained all that too me before surgery, but my new GI told me that this dr. likes to leave a small piece of my colon, more than the sphincter portion, so he can hand sew it together because without this piece staples would have to be used which is standard procedure. I was hoping to find someone else who had this same experience or something similar, or has heard of this before because I even saw my surgen for 7 months and for those 7 months he not once checked that piece of colon to see if it was upset/flared. My new GI took one Flex Sig to know exactly what was going on and that this surgeon is known to leave a small piece of colon in the body so he can hand stitch it instead of staples. So you see my dilema, why didnt my surgeon notice this? He should have been the first one to look at that area especially because he knew he left it there, second, now i have to have a second surgery to have the small piece of colon removed so all i have is my sphincter and small intestine/JPouch. I have had 1 year and a month of daily pain and pills on top of pills and diff. medications to try and treat this when they couldnt figure out what was going on and now that they do they are taking a whole diff. route. It’s like your 1 yard from the goal line and you get kicked in the face and punched in the balls to find out that this didnt all have to be this way, just because a surgeon wanted to leave a part of colon in my body to do it HIS way instead of the correct way meaning getting rid of all of UC that he can and still get me stapled back together. Thanks all for responses.

    steve

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  323. avatar

    cindy says:

    October 12th, 2011 at 7:04 am

    Hi Phoebe,

    Sorry it’s taken me so long to respond!  As far as clothing advice,  I’m not sure you will want to spend the money on my suggestions since you will opt for jpouch surgery.  But, in case you do, I went out and bought some really hip/in style jeans at Gap maternity.  I can’t button regular pants because the waist goes right over my ostomy and since pants are designed these days on the hip, I have to get maternity pants or get regular pants and go to a tailor to turn them into maternity.  I usually get the ones that have a stretchy material that goes right over my ostomy.  Gap has lots of skinny jeans and other cool styles.  As far tighter dresses go, I get underwear that goes all the way over my abdomen.  So no more sexy underwear for me!  But that’s okay as long as i can wear a cool dress!  I have  no problem wearing bathing suits except of course I can’t wear two pieces.  I don’t mind that either, since I’ve had two kids and probably don’t need to wear bikini’s!   hope this helps a little at least.  How are you doing by the way?
    Best, 
    Cindy

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  324. avatar

    Rob says:

    October 14th, 2011 at 10:15 pm

    How can i start but say I’m up at 1AM reading these boards because I’m so worried about my wife. We have been married for 8 years and she has Crohns of the large intestines. They thought she had colitis all these years but she recently had a fistula so they determined it was crohns not colitis. She’s been on every single drug (it would take me 3 days to write her medical history) out there the last two being 6MP and then remicade. She started out on 5mg of remicade every 8weeks and is now up to 15mg every 4 weeks and it doesnt seem to be working. We are scheduled to see the surgeon next week to discuss removal of her colon/rectum. When i tell you i have seen my wife suffering more in these past few years than anyone should have to endure. Accidents in the car, the sound of horrible pain while in the bathroom, canceling trips and plans because of the constant fevers (up to 104 degrees). the ONLY silver lining in this whole thing is our beautiful 9 month old daughter who snuck in while my wife still fighting this disease. We didnt plan for this and were very nervous because of all the drugs she was on. For anyone on meds and in this situation just know that she is 100% healthy and adorable.  I am sharing my story because we have to make a big decision here. Her GI said there are still a few other drugs out there she could try (but not many and with major possible side effects) or she can plan to get it taken out (no J-pouch). My wife says she can’t take the suffering anymore and in her words “want this fckn thing out”. On the other hand she knows this is a permanent decision and there is know going back. we were also hoping for one more miracle baby. She’s 37 going on 38 and the time is a tickin. ANyone have any experiences having a baby after the colon/rectum removal surgery? or anyone who had to actually make this choice to get their colon removed for quality of life and fear how these meds could harm them? any thoughts or comments will be appreciated for we have to soon make the decision of our lives. Thanks!

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    cindy says:

    October 16th, 2011 at 7:05 pm

    Hi Rob,

    You are describing everything I’ve gone through except the diagnosis that it’s Crohn’s, although my doc said it could be Crohns instead of Colitis- only time will tell. He told me they can never give 100% diganosis that it’s colitis.. I had my son in 2008 and had my colon removed in 2010. It has been the BEST choice I have ever made in my life. Having this disease is so life stopping- when you get the surgery, you instantly get your life back. When the recovery process is over (about a month and a week or so) you feel wonderful! Yes, you have a bag, but this little bag has given you a life. No more meds, no more pain, no more sickness. I am more than willing to talk with your wife about the whole shabang. Get her off the meds- it’s no way to live. Enjoy your beautiful child. The surgery feels scary inside, I know- but it is nothing, nothing, like having this disease. My email address is cindycagle08@gmail.com if you or she would like to contact me and my husband (who went through a lot as well, taking care of me and seeing me in such pain). One more thing- I was scared to death about taking all the meds. The more research we did on them the scarier they sounded. They did so many things to my body and brain. Once you get your colon removed and opt for the bag, no more meds, ever! plus you can eat what you want, wear many of the same clothes, play sports (i’m an avid volleyball player and runner), go to the gym, run, get on the floor and roll around with your kid, whatever! You lead a normal, healthy, satisfying life. Again contact me if you like. It makes me so sad to hear people are still suffereing with this disease and not opting for surgery.
    good luck, cindy

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    Beth says:

    December 6th, 2011 at 1:32 am

    I had my J-Pouch surgery 7 years ago and have not had sex since then. I have very loose stools and have to use the bathroom 5-6 times a day. I’ve recently started looking at online dating sites to see if I can meet a man. I worry that if I were to have sex, that I might have an accident. I will sometimes have small ones (normally larger than a “skid mark” if I cough, sneeze, laugh or stand up when I have to go to the bathroom) and if I fall or sit down hard on something I’ve been known to completely evacuate my pouch and soil myself. I’m talking poo down the legs. A few times I’ve even woke up to discover I had soiled myself in my sleep. My worry is that act of having sex will cause me to have an accident. From the pounding and thrusting. Has anyone had this problem? Any ideas on how to avoid it from happening other than going to the bathroom right before? I’ve thought about taking something that might make my stools more solid or even an anal plug or something like it so I don’t poo during sex. Has anyone had this problem and what did they do? Any suggestions, solutions, etc would be greatly appreciated.

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    Mark Eastabrooks Reply:

    Beth, I do not have a J-pouch, the surgeon gave me a straight anastomosis. I know what you are going through; I have not had sex in over two years. I am married and my wife has just about had enough of this sexless live. I too am very nervous and worried that I might have an “accident” during sex. Have you ever considered going back to a bag? I assume you had a temporary bag while you were healing up from the operation. How do you manage going out to dinner or even going to work every day without the fear of having accidents? Here is my suggestion for what it is worth. If you were to meet a man and wanted to have sex with him, hopefully you two would be close enough emotionally to have a conversation about you situation. Would you consider suggesting to him about having sex without all of that “pounding and thrusting”? What about a tender loving approach that might include oral sex and other forms of stimulation. These methods can also elevate both of you to orgasm and might avoid an embarrassing accident. If this man really cares for you, he will understand and be supportive even if you do have an accident. Best of luck to you Beth, be happy and healthy, stay in touch..

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    Heather Reply:

    Hi Mark, I know a guy who had the same op as you, aged 9, now 30, has lots of different girl friends, no issues in that department, the only drawback for him is he won’t eat at work, otherwise he’s fine. Hope this helps, Heather

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    April Reply:

    I have had my J-Pouch for the past 16yrs and I found that in the sex department there are things that help with to control those “embarrassing moments”. I know most people do not like to “plan” to have sex but sometimes you do what you have to do. I will watch what I eat and I always make sure to go to the bathroom first before having sex to help offset the chances of having an accident. I have been with my husband 18yrs so he knows the issues that I have and what can occur. I am sure if I was single and ready to mingle that I would be very caucious and definitely not have random sex with someone who didn’t understand my situation.

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    Sara Reply:

    Hi Beth… I am in kind of the same world, except I have had my pouch for 7 years and over the last 12 months developed a recto-vaginal fistula. So the leaking is now coming from 2 places, not just 1. I have been married for 6 years and been with my husband for 8, so he is very aware of everything involved. But I have come to a point where I don’t even want to have sex in the fear of what would happen. I know he’s frustrated, but I am more scared than anything. To top it all off… all of the leaking doesn’t make a woman feel very sexy or attractive.

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    Michael R says:

    December 9th, 2011 at 11:10 pm

    So I was recently diagnosed with ankylosing spondylitis, which is a fun arthritic-like inflammatory disease. I was prescribed celebrex for the pain/inflammation, but haven’t taken it yet. The info says it’s an NSAID, which makes me worry about it causing pouchitis or other complications. Does anyone have any experience with celebrex? Has it given anyone else trouble? The rhumetologist I was sent to doesn’t seem to understand that I have no colitis since I have no colon. He keeps listing other drugs I could take and mentioning that they’ll help with my colitis as well… may be time to switch doctors.

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    Heather Reply:

    I’ve had celebrex lots of times, but its like getting blood out of a stone cos my doc always tut tuts bout UC, I’ve said loads of times that I’m meant to be UC free due to a j pouch but it falls on deaf ears, the times I have had it I’ve tolerated it really well, no problems at all. I’ve also just been told I have arthritis, I asked the doc if its UC related but apparently they didn’t do a rhumelogy count, so its to be repeated in a month, just made my day!!!
    Anyways back to the celebrex, they were absolutely great, good luck with it, Heather

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    Steve says:

    December 10th, 2011 at 1:18 am

    Has anyone had their surgen tell them that they didn’t have enough small intestine to stretch to their sphincter so they had to leave a piece of the colon in to make it reach, thus causing you to still have UC in that small piece if colon left? Just wondering of anyone else knows of this or had lived through it.

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    merry lynn Reply:

    Steve, when I was going through the process I was told that a J pouch is ony possible if your small intestine was long enough. It’s all in what was given to us to begin with. So it’s a gamble. What I know from my surgery as well is that often a portion of your rectum is left in tack in order to make the cuff for the j pouch. I also know that colitis can be in your rectum as well so there is always a small chance that the disease would still linger.
    I happen to have a j pouch and the cuff made from my rectum. My biggest worry was that my small intestine was not long enough but in the end it has worked out fine. I had surgery with no active colitis but cancer. My colitis had been in remission for just over two years. I was feeling great living large. Went in for a colonoscopy just to get the “clearing” to proceed with our plan to have baby #3. Bad news was high grade dysplasia present. Post surgery good news was that the surgery probably saved my life as there was full cancer in my upper rectum (small organ) that was found to be an aggressive form during pathology. I hope your travel through this process is blessed and as peaceful as it can be. It is a very trying time or at least was for me.

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    Jackie Reply:

    Hi Steven I too had this problem. I had to lose about 40lbs before they would try the surgery again. The surgery where they were supposed to create the pouch was a failure. I lost the weight and it reached fine. I have never heard of leavIng part of the colon but I would get a second opinion FOR SURE on that

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    Sandra D. says:

    December 11th, 2011 at 6:07 pm

    Hi Everyone, I thought I posted my article I wrote but can’t seem to find it in the message board so I am re posting. I was diagnosed with UC in 1998 and struggled for 11 years. I finally decided to have the jpouch surgery in 2009. It was only a one step. I did have some minor complications and had to stay in the hospital for about 3.5 weeks but now I am very glad I did it. I have my life back. I do deal with jpouch issues but would rather have them vs. UC. Although most recently I have been having some strange pains in my lower right abdomen for which I’ll be checked out for tomorrow in a CT Scan. That story is a To be Continued.
    For those that are athletes with their pouch or ostomy, I wanted to share my article about some errors I made with dehydration (although minor), and lessons learned so those of you who are getting back into the swing of things can consider. I hope you find it helpful which is why I wrote the article in the first place. jpouch.org and .net are the best sites for sharing and learning. These sites have helped me get through the rough patches so I’d also like to give back. :)
    Enjoy http://hikeitlikeit.com/2011/colon-free-and-loving-it/

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    Merry Lynn Guy says:

    January 22nd, 2012 at 7:14 pm

    So coming up on two years mark for the take down of my jpouch. feeling great but last week (one day) and this evening I have noticed blood on tissue after using the bathroom. Yes this sent chills down my spine. I just got off a 2 hour flight so maybe the sitting for so long did it but doubt that would be the cause. Just kinda scared. Not blood in bowl but on tissue. Enough to think…yikes. Anyone have this issue from time to time or could calm my nerves???

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    Mark Eastabrooks Reply:

    Hi Merry, I am 18 months out from my reversal. I notice some bright red blood on the toilet paper at least once or twice a week after one of my extended bathroom sessions. This has been happening since the beginning. I talked to my surgeon about it and he was not the least bit concerned. He said that it is from the anastomosis or connection point where he made the connection to my sphincter mussels. I know it is alarming but it does not sound unusual to me. I would speak to your surgeon about it just to be on the safe side. Incidentally, how low was your cancer in the rectum? Take care and I will keep you in my prayers.

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    Nick Reply:

    I didnt see blood for a while, then every once in a while or for a few days in a row there would be a liitle blood just on the tissue or a little in toilet. my doc said dont worry, its periodic…I love wet wipes!! I have for years. there gentle, and leave ya squeaky clean…Be gentle when ya wipe too..my dentist used to tell me I brushed my teeth to hard, I can imagine what Ive been doing to my butt all these years..lol..I also notice a little blood if I hold it for to long. I was told to try and hold it so that my pouche would expand and I wouldnt go as much throughout day but Dont hold it to to long! My rule is only use plane bathroom once if I can help it. I still get butt burn here and there, but I love my Desitin butt paste.Calmoseptine that was thankfully recommended on here is great to. its got a menthol to it.

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    Pat O'Brien Reply:

    I mix calmoseptine with lidocane jelly. Valuable compound for me. 

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    Michael Reply:

    Hi Merry,I’m 18 months since my surgery and have seen blood a couple times. Most recently was after I was on a flight to Las Vegas. I had the same thing on the way back, so it may have something to do with the pressure changes. Either that or it was being squeezed into a middle seat that did it.

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  331. avatar

    K Carlsen says:

    January 26th, 2012 at 9:25 am

    My name is Kim. I am 42 years old. I was diagnosed with UC Ulcerative Colitis in 1997, a month after having my first child. It was not hard in the early years of my disease to keep it under control. In the last three years I have had several really bad flair ups of UC, leading up to needing surgery in July 2011. It is now January 2012 and I am basically starting all over again with reconstructive surgery. My surgion could not figure out what was wrong, and referred me to the Cleveland Clinic. They determined that my JPouch was not working and it was determined there was a leak that needed to be addressed ASAP. I needed to get a Seton incerted on 1/18/12 to drain the infection. I was devastated. I then had surgery 1/20/12 to create another temporary ileostomy to allow the JPouch time to heal. I will need to have this along with the seton for at least the next 6 months. At the 6 month mark, I will have another major surgery to fix the JPouch (reconstruct) and remove the Seton. Right now it sounds awful knowing I need to recovery now and I’ll be doing this all over again in 6 months. After the next surgery, if all goes well, I will have another take down surgery 3 months later. I will need to go through the process of getting reconnected all over again. I know I have no choice and need to just take one day at a time. It’s hard to have come so far, only to have to do it all over again. I have lost over 30 lbs, so I look at the next several months as a time to heal, and a time to reconnect with my family. I remain optimistic that things will work out for me and I will get better. I always could be worse. Please respond if you have a similar situation or have questions. You can follow my blog at http://mystorykcarlsen.blogspot.com/

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