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I have an appointment with my surgeon tomorrow to schedule surgery to remove the huge overgrowth of my jpouch that reaches up one side and across under my ribs. Has anyone here had to have this surgery? I did in 2011 and was told it wouldn’t grow back. It did. Not the doctors fault. It’s rare to begin with. I searched the site for info and only found one person who didn’t know much. I would like to go in with good questions. It’s been a long time since surgery and I am scared and don’t really want to do it.

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You don’t say how many good years you got from the 2011 surgery, but that’s important. You also don’t say how bad things are now, but a pouch that big can’t be functioning properly. You can ask the surgeon if there’s any reason to expect a better result this time. You could also ask if you’re at risk of short bowel syndrome if you have another pouch constructed. It might not be his fault, but his prognosis was incorrect in 2011. Your decision might be whether a similar result is worth the surgery, vs. (perhaps) an end ileostomy, factoring in any risk of a worse outcome, since more small bowel will be sacrificed.

Good luck!

Scott- I probably got nine good years before the size of it made symptoms become obvious. Thank you for the advice about the small bowel question. I don’t think it will use much, but I don’t know.

Sara-  I think it’s like when they expand your skin to put an implant in. This thing grew a little bit at a time. The original j-pouch is still down in the pelvis, but the top of it has grown up to about the size of a two or three-year-old’s arm. And then at the top of that it attaches to the small intestine.

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