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

149 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]
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.

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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

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scott says:

October 18th, 2009 at 6:13 am

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

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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.

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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.

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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]
Colin says:

November 14th, 2009 at 11:25 am

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

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