Hey everyone I am new to this forum. I was hoping to get some feedback and opinons about my condition.
I was diagnosed with Ulcerative Colitis in 7th grade. I am now 16 years old and a Junior in Highschool. I had a full colectomy last year because of how ulcerated my entire large intestine was. Since I was diagnosed with ulcerative colitis, I have never gone into remission. I tried remicaid, high dose steroids, lialda, canasa, and other related medications with no luck whatsoever.
In November last year I had a colectomy and an end ostomy was made. While I was waiting to have the next surgery, I developed pancreatitis and experienced some rectal bleeding. In January I had a J-pouch made out of small intestine that was pulled down and had a loop ostomy put in. I also experienced severe rectal bleeding then and they determined that I had disuse interitis and that the best thing was to allow the waste to go through so they undid the loop in February of this year. Since then, I have had continued bleeding and pain in that small small portion of the colon that was left to ensure me control. It does not respond to any of the medications I have taken. I guess my main question is this: Have others with Ulcerative Colitis experienced this? And if so, how was it fixed?
There has been some question about whether or not what I had was ulcerative colitis or chrons, because, durring scopes, my ulcers appeared as ulcerative colitis but my symptoms were mostly associated with Chrons.
Another question I have: How do you deal with all of the pain that is involved with Ulcerative Colitis? I find it very hard not to just let myself depend on strong painkillers.
Thanks for any feedback. I'm glad theres a place where one can ask such questions without being self-conscience.