I have a jpouch and have developed fistulae (3 setons) that won't heal. i've failed all medications/biologics. Pain is constant, bleeding is constant, surgeon and MD are both telling me to get a permanent diversion and remove j-pouch.
When I had my jpouch surgery (in 1999), the temporary ileostomy didn't work well at all. Constant leakage, skin was on fire 24-7. I can't live like that again. So naturally, I've resisted this surgery and I'm terrified.
My biggest fear is constant leakage. I know there are things I can do to thicken it, but what are the odds of incurable leakage problems?
I live alone and so I'll have to take care of myself (I had had help with the temporary one)--how hard is it?
I should also say: I've got a big belly with lots of scar tissue from prior surgery. Any fellow fatties out there have advice?
Finally, should I keep trying to live with the setons? I'm afraid I'm trading one awful experience for an even worse one.
Lots of questions, any feedback is welcome.