Hi I am 22 and was diagnosed with ulcerative colitis aged 13. For the last 9 years I have struggled to control the regular flare ups. I have tried every mediation available and the only one that now slightly helps is high does prednisone. For the last year I have been considering surgery colitis has had such a negative effect on my life an I am now finally ready for the horrible disease to be gone. I have 2 young children and would love nothing more than to feel comfortable taking them out rather than being stuck in house panicking about the toilet. I am due to meet with the surgeon to discuss surgery but I am looking for support from others who have had the surgery and their experiences with either the bag or j- pouch. Thanks Amy.
Thompamy Thompamy
3 Responses Jan 17, 2013

you are so young to get the surgery with the bag or pouch. I was diagnosed when I was 19 and now at 27 I am a mother of a three year old but I felt the same why as you. I was nervous to go on long car rides alone with my daughter when she was in a carseat cause I thought or the heck am I going to get her out if I have to run to the bathroom. So many times I wouldn't eat before I would go anywhere and that would miss with me having low blood sugar. I would love for you to check out other options. I starting drinking shakeology and I have no symptoms at all and I am able to do whatever and go wherever I want with my daughter and no longer have the anxiety. check out my website at or email me personally at I would LOVE to help you be more active with your children!

I was diagnosed with UC at 13 as well but my mom opted for the surgery right away. At 14 I had a total colectomy and then at 16 the ostomy reversal J-Pouch surgery. After that I was alright for a few years then started to get pouchitis which is basically a bacterial infection in the J-Pouch. I take antibiotics for 4-6 weeks to overcome the pouchitis. Now after 11 years from my last surgery I have developed horseshoe fistulas which are very painful and swell when infected, I am on a maintenance dose of two antibiotics. I've learned that 10-15 years after the J-Pouch surgery there may be complications. In my case the surgeons had to leave in a part of my rectum (the size of a foot print in a football field) that now is causing the fistulas to surface.
My doctors have put me through various tests, and every test shows I have UC not Crohn's disease, as fistulas are common with Crohn's patients. At this point I don't want to go back on immunosuppressants, which I haven't taken since I was 13 before the surgery. And I don't want setons placed in me, which could complicate things even more. I do want this adipose-derived stem cell ointment which is in clinical trails and none of my doctors want to touch it because of how new the treatment is! I have been emailing, and researching any clinical trails but with no luck yet.
Always stay positive, you were able to have children something I can't do because how afraid I am of more complications, and worried of passing on this horrible autoimmune disorder to future generations.
Keep on keeping on, Kim.

Wow, your story is so similar to mine. Except that I am afraid of the surgery, i think i may need lots of physocological support if i went through with that. i just started the i.v. infusions. I am also taking 4 lialda's a day and pentasa enema's ....Good Luck Stay Strong I feel your pain!