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I have had j pouch surgery (as well as an impromptu hysterectomy in the same operation) in february. I have been released from the hospital in may and am still having problems with sore skin, fistula, leaking pouch. I've gone to the ER twice since I got home. They say it takes a year or two to get through these problems with the surgery. I have an inverted stoma, which can't be seen because of swelling and infection. Really difficult. The doctors told me that they will try to fix the fistula, but that fistulas sometimes reoccur or occur in another area, in which case they would have to make the illeostomy permament. I don't know what to think, it seems a disappointment that I may have the ostomy for the rest of my life if the fistula(s) continue. I hope the irritation and swelling gets better with time, I've had help from the ostomy nurse and she gave me a belt with a hole to keep the wafer in place. I want to start exercising a little, she said not to lift weights or jump yet, so easy aerobic exercise might be o.k. No zumba or body pump yet.
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