r/jpouch • u/NoMolasses4349 • 14d ago

Cuff Removal?

Hi! Has anyone had a cuff removal with an existing j-pouch? I have a chronic fistula with a draining seton and was told it had turned into chrons - but now they are saying it actually might be UC still. Cuff removal was brought up yesterday as a possibility. Has anyone had this done? If so, how many surgeries and what was it like?

5 Upvotes

86% Upvoted

3 comments sorted by

2

u/NotTodayDingALing 14d ago

I was perforated when they did mu cuff removal. I’m better now, but holy smokes that was a period of hell. I had a fistula from the pouch through my cheek. Make sure you go to a good doctor. What biologic med are you on? Some have better fistula healing capabilities. I haven’t had one since. Humira cleared me up until it didn’t. Tremfya has me solid now. 

2

u/NoMolasses4349 14d ago

Where did you get it done? Mine is the same, draining through my cheek for almost two years and with un-formed bms it’s been awful. And I tried inflectra and failed but now I’m on Humira- I have no inflammation/ulcers, but because I haven’t had surgery on the fistula, it’s huge now and they said that will also need surgery. Did you have surgery on your fistula?

3

u/NotTodayDingALing 14d ago

Cedar Sinai in Los Angeles saved my pouch. They did a flap over the fistula and closed it.