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

Mark, 24 Jul 08

422 Responses to “Our Message Board”

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

[Reply]
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

[Reply]
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.

[Reply]
ml Reply:
July 1st, 2009 at 5:37 am
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.

[Reply]
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!!

[Reply]
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

[Reply]
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.

[Reply]
Christie Reply:
July 17th, 2009 at 11:02 pm
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!!!

[Reply]
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.

[Reply]
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

[Reply]
Gina Chapman Reply:
June 30th, 2009 at 8:53 pm
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.

[Reply]
Chris Reply:
October 18th, 2009 at 6:24 pm
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.

[Reply]
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

[Reply]
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.

[Reply]
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

[Reply]
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.

[Reply]
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]
Kanaka Reply:
May 27th, 2009 at 9:37 pm
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]
Gina Chapman Reply:
June 30th, 2009 at 9:05 pm
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]
Kanaka Reply:
July 15th, 2009 at 10:23 am
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
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]
jackie Reply:
December 21st, 2009 at 10:46 pm
i am having tons of troubles… feel free to chat any time

[Reply]
Lizz says:

March 28th, 2009 at 8:12 am

Of course, shoot.

[Reply]
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]
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]
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]
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]
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 [...]
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….

[Reply]
B. Malta Reply:
September 11th, 2009 at 7:12 pm
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?

[Reply]
ml Reply:
September 12th, 2009 at 5:39 am
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

[Reply]
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]
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]
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]
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]
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]
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]
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]
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]
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]
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]
Brevin says:

April 11th, 2009 at 9:09 pm

Hi Deborah! How is your son doing?

[Reply]
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]
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]
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]
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]
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]
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]
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]
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]
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]
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]
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]
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]
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]
Mark Reply:
May 31st, 2009 at 2:03 pm
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]
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.

[Reply]
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. ?

[Reply]
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]
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

[Reply]
Eric Reply:
May 27th, 2009 at 10:05 am
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.

[Reply]
Chaz & Lori Burton Reply:
May 27th, 2009 at 5:36 pm
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???

[Reply]
ml Reply:
July 1st, 2009 at 5:25 am
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]
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!

[Reply]
Paul Reply:
June 2nd, 2009 at 7:04 pm
Megan,
I hope all is going well and I’m looking forward to hearing about your experience.

[Reply]
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]
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!

[Reply]
Brevin Reply:
June 20th, 2009 at 11:42 am
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

[Reply]
Alison Reply:
June 20th, 2009 at 4:24 pm
thanks

[Reply]
Brevin Reply:
June 20th, 2009 at 10:45 pm
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.

Erin Reply:
June 21st, 2009 at 5:38 pm
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.

[Reply]
Erin Reply:
June 21st, 2009 at 5:39 pm
I meant *summer dresses hehe

[Reply]
Alison Reply:
June 21st, 2009 at 6:32 pm
thanks so much guys, i did get a pair support panties and they are very helpful

Erin Reply:
June 21st, 2009 at 9:10 pm
Good, glad that’s working out for you.

[Reply]
Erin Reply:
June 24th, 2009 at 12:11 am
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]
Erin says:

June 21st, 2009 at 5:38 pm

I meant *summer dresses hehe

[Reply]
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]
Eric Reply:
June 21st, 2009 at 8:11 pm
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]
Brevin Reply:
June 22nd, 2009 at 11:37 pm
This post seems hidden in the message board. Slap this on the front page!

[Reply]
ml says:

June 24th, 2009 at 3:31 pm

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

[Reply]
Mark Reply:
June 24th, 2009 at 4:57 pm
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]

[Reply]
Mark Reply:
June 24th, 2009 at 4:59 pm
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/

[Reply]
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]
ML says:

June 24th, 2009 at 6:10 pm

meant to say non active colitis.

[Reply]
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?

[Reply]
Alison Reply:
July 10th, 2009 at 5:30 pm
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

[Reply]
Mark Reply:
July 10th, 2009 at 7:29 pm
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.

[Reply]
Erin Reply:
July 10th, 2009 at 10:28 pm
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]
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]
"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]
Megan Reply:
July 17th, 2009 at 6:02 am
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!

[Reply]
"Harry" Reply:
July 18th, 2009 at 10:40 pm
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]
Megan Reply:
July 22nd, 2009 at 2:37 am
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.

ml Reply:
August 1st, 2009 at 5:21 pm
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]
Harry Reply:
August 3rd, 2009 at 12:08 am
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]
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]
Mark Reply:
July 25th, 2009 at 12:18 pm
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).

[Reply]
PDXDave Reply:
August 3rd, 2009 at 4:09 pm
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]
ml says:

August 1st, 2009 at 5:00 pm

It’s official…..surgery.

[Reply]
Mark Reply:
August 1st, 2009 at 7:42 pm
Okay, okay, when is it scheduled? How are you doing with this news now that it is decided?

[Reply]
ml Reply:
August 1st, 2009 at 8:53 pm
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.

[Reply]
B. Malta Reply:
September 11th, 2009 at 7:22 pm
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.

ml Reply:
September 12th, 2009 at 5:45 am
Sept. 23 is my surgery date. The day after my birthday. Boo hoo.

ML Reply:
September 22nd, 2009 at 7:22 pm
surgery postponed til november 17th

[Reply]
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

[Reply]
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]
Mark Reply:
September 25th, 2009 at 12:20 pm
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]
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.

[Reply]
ML Reply:
October 8th, 2009 at 5:59 am
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.

[Reply]
Colin Reply:
October 8th, 2009 at 12:41 pm
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.

[Reply]
ML Reply:
October 8th, 2009 at 5:56 pm
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

Colin Reply:
October 9th, 2009 at 12:06 am
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.

[Reply]
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!!

[Reply]
Alvaro Reply:
October 8th, 2009 at 6:25 am
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!

[Reply]
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!

[Reply]
ML Reply:
October 8th, 2009 at 7:30 am
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.

[Reply]
Scott Reply:
October 29th, 2009 at 4:17 pm
I’ve been able to get yhrough maybe 2 min. of meditation. For me its very difficult.

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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!!!

[Reply]
Mark Reply:
October 8th, 2009 at 9:11 am
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.

[Reply]
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.

[Reply]
Mark Reply:
October 10th, 2009 at 4:26 pm
colin, see reply below.

[Reply]
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.

[Reply]
Colin Reply:
October 10th, 2009 at 11:14 pm
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.

[Reply]
Colin Reply:
October 10th, 2009 at 11:15 pm
…So if I could “limit the damage” as much as possible, I guess my loopy mind has made it seem like the best option.

[Reply]
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

[Reply]
ML Reply:
October 11th, 2009 at 6:48 pm
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

[Reply]
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

[Reply]
Colin Reply:
October 14th, 2009 at 10:54 am
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.

[Reply]
Denise Duhamel Reply:
October 15th, 2009 at 8:52 am
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.

[Reply]
ML Reply:
October 14th, 2009 at 11:39 am
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.

[Reply]
Denise Duhamel Reply:
October 15th, 2009 at 9:32 am
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.

[Reply]
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.

[Reply]
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

[Reply]
Mark Reply:
October 16th, 2009 at 8:20 am
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.

[Reply]
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.

[Reply]
Alison Reply:
October 16th, 2009 at 5:20 am
Thanks so much! i feel better about all this now

[Reply]
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!

[Reply]
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.

[Reply]
Mark Reply:
October 21st, 2009 at 8:50 am
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/

[Reply]
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]
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.

[Reply]
Megan Reply:
October 24th, 2009 at 9:35 pm
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.

[Reply]
ML Reply:
October 28th, 2009 at 7:58 pm
called the doctors office and we are all on the same page for the November surgery.

[Reply]
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]
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.

[Reply]
Scott says:

October 29th, 2009 at 4:12 pm

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

[Reply]
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

[Reply]
Danielle Reply:
November 4th, 2009 at 8:32 am
Good Luck ML! Heal fast and well. Be sure to stay as positive as possible even when things get challenging.

[Reply]
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”

[Reply]
ML Reply:
November 15th, 2009 at 6:29 pm
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.

[Reply]
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.

[Reply]
Mark Reply:
November 15th, 2009 at 7:12 pm
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.

[Reply]
ML says:

November 15th, 2009 at 7:11 am

tick tock, tick tock. 48 hours until surgery.

[Reply]
Brevin Reply:
November 15th, 2009 at 9:07 am
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.

[Reply]
ML Reply:
November 15th, 2009 at 6:28 pm
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!!!!

[Reply]
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

[Reply]
Mark Reply:
November 15th, 2009 at 9:04 pm
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).

[Reply]
ML Reply:
November 17th, 2009 at 3:32 am
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

[Reply]
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.

[Reply]
Brevin Reply:
November 21st, 2009 at 1:11 pm
You should totally take pictures of your “journey” (by “journey” I mean the nurses)

[Reply]
Scott Reply:
November 21st, 2009 at 3:26 pm
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

[Reply]
Megan Reply:
November 21st, 2009 at 8:16 pm
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.

[Reply]
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?

[Reply]
Eric Reply:
November 24th, 2009 at 12:28 am
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.

[Reply]
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.

[Reply]
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.

[Reply]
Megan Reply:
November 28th, 2009 at 11:01 am
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?

[Reply]
Lisa Reply:
November 28th, 2009 at 1:25 pm
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

[Reply]
Megan Reply:
November 28th, 2009 at 5:36 pm
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

ML Reply:
December 1st, 2009 at 8:57 pm
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
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

[Reply]
Megan Reply:
November 28th, 2009 at 10:17 am
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

[Reply]
Thomas Reply:
December 1st, 2009 at 9:27 pm
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.

[Reply]
Thomas Reply:
December 1st, 2009 at 9:39 pm
…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.

Mark Reply:
December 1st, 2009 at 9:47 pm
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.

Thomas Reply:
December 1st, 2009 at 9:56 pm
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

Megan Reply:
December 1st, 2009 at 10:00 pm
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

[Reply]
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!

[Reply]
Eric Reply:
November 30th, 2009 at 10:01 pm
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

[Reply]
Megan Reply:
December 1st, 2009 at 7:16 pm
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.

[Reply]
Megan Reply:
December 1st, 2009 at 7:18 pm
Jackie, also see Rachel’s post to you right below this.

[Reply]
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!

[Reply]
Mark Reply:
December 1st, 2009 at 7:24 pm
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

[Reply]
Rachel Reply:
December 1st, 2009 at 8:45 pm
Thanks, Mark! I appreciate it. I’m SO nervous.

[Reply]
ML Reply:
December 1st, 2009 at 9:02 pm
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

[Reply]
Jackie Reply:
December 2nd, 2009 at 10:22 am
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.

[Reply]
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

[Reply]
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.

[Reply]
Megan Reply:
December 1st, 2009 at 7:04 pm
Hi ML, great to hear from you. Heal well and remember to WALK, WALK, WALK.

[Reply]
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!!

[Reply]
Eric Reply:
December 2nd, 2009 at 10:03 am
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

[Reply]
Crystal K Reply:
December 2nd, 2009 at 10:11 am
I sent you a private email as well Eric but I am having surgery at Lutheran Hospital in Lakewood.

[Reply]
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?

[Reply]
ML Reply:
December 3rd, 2009 at 5:07 pm
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

[Reply]
Eric Reply:
December 3rd, 2009 at 9:44 pm
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!

[Reply]
Erin Reply:
December 12th, 2009 at 7:22 pm
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.

[Reply]
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.

[Reply]
Jason Haas Reply:
December 3rd, 2009 at 8:08 pm
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;

[Reply]
ML Reply:
December 3rd, 2009 at 8:51 pm
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.

[Reply]
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

[Reply]
J Haas Reply:
December 6th, 2009 at 8:16 pm
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;

[Reply]
ML Reply:
December 6th, 2009 at 8:50 pm
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.

[Reply]
J Haas Reply:
December 7th, 2009 at 3:43 pm
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.” :^)
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.

[Reply]
Colin Reply:
December 7th, 2009 at 10:10 pm
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.

[Reply]
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.

[Reply]
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”.

[Reply]
Mark Reply:
December 8th, 2009 at 4:21 pm
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.

[Reply]
ML Reply:
December 8th, 2009 at 7:23 pm
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]
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?

[Reply]
ML Reply:
December 8th, 2009 at 7:25 pm
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

[Reply]
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.

[Reply]
Colin Reply:
December 8th, 2009 at 8:07 pm
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.

[Reply]
Mark Reply:
December 8th, 2009 at 8:42 pm
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!

[Reply]
Colin Reply:
December 9th, 2009 at 7:34 am
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.

J Haas Reply:
December 9th, 2009 at 8:05 am
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;

[Reply]
Kanaka Reply:
December 11th, 2009 at 11:06 am
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.
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?

[Reply]
Eric Reply:
December 10th, 2009 at 7:44 am
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.

[Reply]
Mark Reply:
December 10th, 2009 at 9:49 am
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.

[Reply]
Kim Reply:
December 10th, 2009 at 12:02 pm
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!

[Reply]
Mark Reply:
December 10th, 2009 at 6:50 pm
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.

Kim Reply:
December 10th, 2009 at 8:29 pm
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?

[Reply]
Mark Reply:
December 11th, 2009 at 7:54 am
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.

Chris Reply:
December 11th, 2009 at 8:11 am
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

J Haas Reply:
December 11th, 2009 at 8:42 am
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;
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!

[Reply]
Colin Reply:
December 10th, 2009 at 11:00 am
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.

[Reply]
Jackie Zimmerman Reply:
December 10th, 2009 at 11:03 am
Colin can I pick your brain about him and cleveland? Shoot me an email jackiezimmerman [at] gmail dot com

[Reply]
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

[Reply]
Mark Reply:
December 10th, 2009 at 6:53 pm
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.

[Reply]
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

[Reply]
Kanaka Reply:
December 11th, 2009 at 11:03 am
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.

[Reply]
ML Reply:
December 11th, 2009 at 2:07 pm
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

[Reply]
Thomas Reply:
December 11th, 2009 at 2:22 pm
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

ML Reply:
December 11th, 2009 at 3:15 pm
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
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.

[Reply]
ML Reply:
December 12th, 2009 at 5:50 pm
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

[Reply]
ML Reply:
December 12th, 2009 at 5:51 pm
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.

[Reply]
Rachel Reply:
December 13th, 2009 at 10:34 am
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. :-\

[Reply]
ML Reply:
December 13th, 2009 at 11:03 am
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

Megan Reply:
December 13th, 2009 at 12:15 pm
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.

Kristine Reply:
December 13th, 2009 at 7:16 pm
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

[Reply]
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?

[Reply]
Colin Reply:
December 13th, 2009 at 3:04 pm
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.

[Reply]
Rachel Reply:
December 14th, 2009 at 7:50 am
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.

[Reply]
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

[Reply]
Mark Reply:
December 13th, 2009 at 8:26 pm
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/

[Reply]
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!

[Reply]
Eric Reply:
December 13th, 2009 at 8:19 pm
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.

[Reply]
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

[Reply]
Emily Reply:
December 13th, 2009 at 11:07 pm
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!

[Reply]
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!

[Reply]
Colin Reply:
December 14th, 2009 at 8:21 pm
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.

[Reply]
ML Reply:
December 14th, 2009 at 8:33 pm
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

[Reply]
Mark Reply:
December 15th, 2009 at 7:23 am
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.

[Reply]
Mark Reply:
December 15th, 2009 at 7:18 am
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

[Reply]
Mark Reply:
December 15th, 2009 at 7:21 am
….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.

[Reply]
J Haas Reply:
December 15th, 2009 at 7:40 am
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;

[Reply]
ML says:

December 14th, 2009 at 9:28 pm

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

[Reply]
Colin Reply:
December 14th, 2009 at 9:59 pm
Congrats, ML. That’s truly excellent news!

[Reply]
Lisa Reply:
December 16th, 2009 at 4:45 pm
Good to hear the great news ML! Everything happens for a reason and it seems your surgery was a blessing in many disguises.

[Reply]
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.

[Reply]
Kanaka Reply:
December 15th, 2009 at 11:31 am
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

[Reply]
Mark Reply:
December 15th, 2009 at 5:14 pm
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/

[Reply]
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.

[Reply]
Kristine Reply:
December 16th, 2009 at 8:21 pm
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.

[Reply]
ML Reply:
December 17th, 2009 at 11:45 am
picked one up yesterday and it was a sigh of relief. Glad I could make you laugh Kristine.

[Reply]
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!

[Reply]
ML Reply:
December 16th, 2009 at 9:35 pm
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.

[Reply]
Megan Reply:
December 19th, 2009 at 9:39 am
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.

[Reply]
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.

[Reply]
ML Reply:
December 17th, 2009 at 11:50 am
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

[Reply]
Mark Reply:
December 19th, 2009 at 9:32 am
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!

[Reply]
Dan Reply:
December 20th, 2009 at 5:27 pm
ML and Mark. Thanks for your perspectives. Very much appreciated. Dan

[Reply]
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.

[Reply]
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.

[Reply]
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.”

[Reply]
Kanaka Reply:
December 22nd, 2009 at 9:07 am
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

[Reply]
ML Reply:
December 23rd, 2009 at 5:13 am
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

[Reply]
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!

[Reply]
Colin Reply:
December 23rd, 2009 at 1:19 pm
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.

[Reply]
ML Reply:
December 23rd, 2009 at 3:32 pm
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.

[Reply]
J Haas Reply:
December 24th, 2009 at 12:35 pm
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!” :^)

ML Reply:
December 27th, 2009 at 5:59 pm
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
ML says:

December 24th, 2009 at 6:57 pm

Merry Christmas Eve!!!

[Reply]
Mark Reply:
December 24th, 2009 at 7:42 pm
Thanks, ML. Happy Holidays, Hanukkah and Kwanzaa. And most importantly, happy New Year.

[Reply]
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.

[Reply]
ML Reply:
December 27th, 2009 at 5:55 pm
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]
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.

[Reply]
Lisa Reply:
January 12th, 2010 at 2:07 pm
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.

[Reply]
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

[Reply]
Mark Reply:
December 31st, 2009 at 2:55 pm
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]
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

[Reply]
Colin Reply:
January 6th, 2010 at 12:32 am
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.

[Reply]
ML Reply:
January 12th, 2010 at 12:05 am
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.

[Reply]
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]
Emily Reply:
January 13th, 2010 at 4:13 pm
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]
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]
ML Reply:
January 11th, 2010 at 2:50 pm
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!!

[Reply]
Colin Reply:
January 11th, 2010 at 9:11 pm
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.

[Reply]
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:
January 13th, 2010 at 9:46 am
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:
January 13th, 2010 at 4:07 pm
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!

[Reply]
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

[Reply]
Emily Reply:
January 13th, 2010 at 4:02 pm
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!

[Reply]
Joe Reply:
January 13th, 2010 at 4:39 pm
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.

[Reply]
Emily Reply:
January 13th, 2010 at 10:37 pm
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!

Eric Reply:
January 14th, 2010 at 11:41 am
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!

[Reply]
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.

[Reply]
Mark Reply:
January 17th, 2010 at 7:45 am
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

[Reply]
Mark Reply:
January 17th, 2010 at 7:45 am
Also, see below comment from Janet.

[Reply]
ML Reply:
January 18th, 2010 at 7:54 am
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.

[Reply]
J Haas Reply:
January 25th, 2010 at 8:08 am
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;

[Reply]
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.

[Reply]
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?

[Reply]
Mark Reply:
January 18th, 2010 at 10:45 am
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.

[Reply]
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?

[Reply]
Eric Reply:
January 19th, 2010 at 3:48 pm
Hi there,
My ostomy nurse was very happy to receive my unused supplies once I had takedown. Try that?

[Reply]
Linda Reply:
January 19th, 2010 at 9:05 pm
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

[Reply]
Beth Reply:
January 28th, 2010 at 10:44 am
Medwish International will take your unused supplies, they also are collecting donations for Haiti. But they also give supplies to those who need them.
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.

[Reply]
J Haas Reply:
January 26th, 2010 at 6:59 am
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

[Reply]
Crystal K Reply:
January 29th, 2010 at 11:24 am
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]
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.

[Reply]
ML Reply:
January 28th, 2010 at 9:39 am
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!

[Reply]
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]
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!

[Reply]
Megan Reply:
January 31st, 2010 at 9:23 pm
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/

[Reply]
Michael R Reply:
January 31st, 2010 at 10:35 pm
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!

[Reply]
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?

[Reply]
Michael R Reply:
February 3rd, 2010 at 5:41 am
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!

[Reply]
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]
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.

[Reply]
Mark Reply:
February 8th, 2010 at 7:33 am
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.

[Reply]
Dan Reply:
February 9th, 2010 at 4:19 am
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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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!

[Reply]
J Haas Reply:
February 8th, 2010 at 6:59 am
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;

[Reply]
upsidedownhannah Reply:
February 11th, 2010 at 12:35 pm
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.

[Reply]
Kanaka Reply:
February 12th, 2010 at 12:37 pm
I have heard VLS3 (google it) helps with pouchitis. Try it…GL.

upsidedownhannah Reply:
February 12th, 2010 at 4:25 pm
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.

J Haas Reply:
February 13th, 2010 at 5:36 am
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 :^)

Mark Reply:
February 13th, 2010 at 8:22 am
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.

[Reply]
upsidedownhannah Reply:
February 13th, 2010 at 10:04 am
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!

[Reply]
Megan Reply:
February 13th, 2010 at 11:12 am
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

Megan Reply:
February 13th, 2010 at 11:17 am
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.

Megan Reply:
February 13th, 2010 at 11:20 am
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.

upsidedownhannah Reply:
February 13th, 2010 at 6:22 pm
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.
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.

[Reply]
Mark Reply:
February 8th, 2010 at 9:21 pm
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!

[Reply]
J Haas Reply:
February 8th, 2010 at 9:46 pm
This should be saved as an FAQ: Fantastic post Mark!

[Reply]
Daniel Reply:
February 9th, 2010 at 4:49 am
You can expect our full support! We’ll be thinking of you and your family today.

[Reply]
Kanaka Reply:
February 9th, 2010 at 11:47 am
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!

[Reply]
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.

[Reply]
Mark Reply:
February 12th, 2010 at 8:11 am
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!

[Reply]
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!

[Reply]
Lisa Reply:
February 14th, 2010 at 4:34 pm
Sorry to hear things aren’t going as well as you’d hoped. Keep your head up, things will get better!

[Reply]
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

[Reply]
J Haas Reply:
February 16th, 2010 at 8:12 pm
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;

[Reply]
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.

[Reply]
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.

[Reply]
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!

[Reply]
Colin Reply:
February 17th, 2010 at 12:53 am
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*.

[Reply]
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

[Reply]
ML Reply:
February 17th, 2010 at 8:27 am
I just lmao!!!! Thanks

[Reply]
Mark Reply:
February 17th, 2010 at 12:44 pm
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.

[Reply]
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!

[Reply]
Mark Reply:
February 17th, 2010 at 11:23 am
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.

[Reply]
Kanaka Reply:
February 17th, 2010 at 12:52 pm
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

[Reply]
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

[Reply]
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.

[Reply]
Cynthia C. Reply:
February 23rd, 2010 at 11:56 am
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

[Reply]
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

[Reply]
J Haas Reply:
February 18th, 2010 at 10:44 am
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;

[Reply]
Mark Reply:
February 18th, 2010 at 1:10 pm
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/

[Reply]
Tina Reply:
February 23rd, 2010 at 3:24 pm
Dan, Konsyl has a comparison chart you can use to compare the top brands. https://www.konsyl.com/t-ComparisonGuide.aspx

[Reply]
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

[Reply]
Mark Reply:
February 25th, 2010 at 7:19 pm
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/

[Reply]
Cynthia C. Reply:
February 26th, 2010 at 10:46 am
wow, thanks so much! i really appreciate it!

best, cindy

[Reply]
Rachel Reply:
February 27th, 2010 at 6:48 pm
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.

[Reply]
Cynthia C. Reply:
March 2nd, 2010 at 12:23 pm
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]
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

[Reply]
Megan Reply:
February 24th, 2010 at 6:04 am
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.

[Reply]
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?

[Reply]
ML Reply:
February 27th, 2010 at 7:34 pm
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]
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.

[Reply]
Michael R Reply:
February 28th, 2010 at 7:42 pm
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.

[Reply]
ML Reply:
February 28th, 2010 at 7:59 pm
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

[Reply]
J Haas Reply:
February 28th, 2010 at 9:23 pm
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.

[Reply]
Mark Reply:
February 28th, 2010 at 9:24 pm
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.

[Reply]
Jacyln Reply:
March 1st, 2010 at 6:15 am
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!

[Reply]
Rachel Reply:
March 1st, 2010 at 2:15 pm
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.

[Reply]
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!

[Reply]
Rachel Reply:
March 2nd, 2010 at 8:17 pm
Agreed – but to be fair, we’re paying out the nose for our insurance since my husband is self-employed.

[Reply]
ML Reply:
March 2nd, 2010 at 9:09 pm
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.

[Reply]
Rachel Reply:
March 3rd, 2010 at 12:50 pm
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!
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.

[Reply]
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.

[Reply]
Terry Reply:
March 5th, 2010 at 6:40 pm
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

[Reply]
Emily Reply:
March 8th, 2010 at 5:33 pm
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!

[Reply]
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.

[Reply]
Megan Reply:
March 5th, 2010 at 8:25 am
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.

[Reply]
Emily Reply:
March 8th, 2010 at 5:38 pm
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!

[Reply]
Jacyln says:

March 5th, 2010 at 8:22 am

I have had this hot bath and massaging the area helps

[Reply]
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.

[Reply]
Mark Reply:
March 6th, 2010 at 9:57 am
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.

[Reply]
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.

[Reply]
ML Reply:
March 6th, 2010 at 2:21 pm
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.

[Reply]
Joe Reply:
March 11th, 2010 at 8:59 pm
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>

[Reply]
Mark Reply:
March 6th, 2010 at 7:36 pm
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

[Reply]
Joe Reply:
March 7th, 2010 at 4:18 pm
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.

[Reply]
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???

[Reply]
Terry Reply:
March 11th, 2010 at 1:21 pm
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.

[Reply]
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.

[Reply]
ML Reply:
March 7th, 2010 at 6:36 pm
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

[Reply]
Megan Reply:
March 7th, 2010 at 8:45 pm
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.

[Reply]
Cynthia C. Reply:
March 8th, 2010 at 11:19 am
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!!

[Reply]
Terry Reply:
March 11th, 2010 at 1:01 pm
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.

[Reply]
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?

[Reply]
Mark Reply:
March 11th, 2010 at 3:25 pm
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.

[Reply]
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

[Reply]
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!

[Reply]

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