@egk posted: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.
Make sure to get OSTOMY BELTS too, they help a bunch! And use lots of stoma powder!