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hello, I am 44, I had a total colectomy in 2003, after living with colitis for 5 years. Its was pretty bad and in the end I had no choice but to have the thing removed. I had the 2 part surgery , had a stomas for just 3 months and then the pouch. I was told by my surgeon that everything would be much better once i had the pouch. 12 years on and i have nothing but pain. I am constnatly battling pouchitis, I dont sleep at nights as it regularly gets me up 4 or 5 times. I can nver seem to empty it and the anastomosis, the exit, is always, always very sore. Sometimes so sore i cant walk. I have had more creams and potions than you can shake a stick at. My backside feels like a very ragged rag indeed. Now I am starting to wonder if its time to give up and go back to having a stoma, I am not sure if it is even possible. When i look back i seem to remember having the stoma as not being a very big deal I could manage cleaning and changing it quite well. And I actually felt well for the first time in years. I remember the stoma itself didnt hurt but i was recovering from surgery so maybe that was a distraction. My husband thinks I am looking at it with rose coloured spectacles, is he right, I dont know. I work I have kids I am very tired, basically what I am asking, has anyone gone back to a stoma. Is it the solution to sleepless nights and daily pain. I should say i had a serious problem with pain killer addiction so changing pain killers isnt really an option for me anymore, I dont trust my self to take anything stronger than paracetamol these days. Whats the reality of living with a stoma, I need some real life experience please, i just cant carry onlike this much longer.
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