I got diagnosed with Ulcerative Colitis in April 2008 ever since that i been on meds i was healing feeling better for while but once my gastro got me off prednisone which is a steriod i felt my symptoms started to come back ever since that i feel like i havent gotten better even with medication im taking im even watching my diet and trying not stress anyways i beginning to think i might need surgery and have my colon remove since my syptoms had gotten worse constanly going to the washroom alot and the cramps and pain at times and not getting enought sleep because i go use the washroom at night I wanted to know if anyone how had UC had their colon remove if so did you have to walk around with pouch bag outside and for long time or forever ? Did the surgery work out find for you ? I need answers and i want to hear other people opinions i want to know if there is hope for me thanks have a wondeful day
I had my colon removed in 1991 (aged 22) following a severe bout of UC. My op's were spread over about 6 months if I remember correctly. The first was to remove the colon and I had a stoma created at that time and had to wear a bag. The second was after 3-4 months when I had the internal pouch created, still with stoma and bag. The last op was to remove bag and activate the internal pouch. So I guess I had the bag for about 6 months although I was very poorly at the time of the first op and took quite a long time to heal/recover for the second one.
This was all a long time ago for me and I know from browsing the above sites that bag technology and aftercare has improved drastically since my op's.
Best wishes for the future.
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I had my colon removed in 1996 after battling UC for 12 years. The surgery included J-pouch reconstruction so I had a bag for a short time. Have been pain free. Depending what I eat, I have frequent bm's but no pain.
I am also a UC sufferer just as you are so I understand what you are going through. UC can be a very pernicious disease. Is prednisone all you have tried?? There are also ASA-5 drugs such as Lialda and Asacol that can be prescribed, as well as a syntheitc steroid called Enticort. If that does not help there is always Imuran and Remicade as well as a few others that I have had little exposure to. As for myself, I have tried almost all of these and have been having mostly good luck with Remicade and have been in remission for at least a year.
I went through a phase of worry about losing my colon, as I am only 41. My doctor told me that if they could keep me healthy and in remision, colon removal would not be necessary until pre-cancerous cells are detected. With a little luck I just may be able to keep it another 20 years or so.
The main thing for you to focus on is getting healthy and maintaining remission. Try all the different drugs at your disposal, and only worry about colon removal after you have depleted the arsenal of medications that are at your Dr.'s disposal.
Best of luck to you in your fight against this terrible disease.