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Brief history-diagnosed UC and had J pouch for 18 years with some minor bumps along the way. About 4 years ago, I started having lots of problems and my diagnosis was changed to Crohn's. I still have my J pouch but have been on Remicade, Humira, and now Cimzia. I went to my colon/rectal surgeon's office on Monday because I was having pain and seemed to have a lump on one side of my rectum.  He took me to the OR and told me he found a fistula tract, put a seton in, and incised and drained the abscess. I thought I would be on my way to recovery but then I started having pain again on Thursday night. By Friday morning, I had a lump on the other side of my rectum/vagina. My colon/rectal surgeon was leaving for vacation so I went to the hospital to see someone in the same office. He took me to the OR on Friday night, found a pea sized abscess, drained it, and put another seton in. What the heck is going on? Has anyone had repeated abscesses/fistulas in such a short period of time or the same abscess/fistula give them multiple problems? I am totally freaking out because how is a person supposed to live like this? I am so worried about another painful "lump" popping up again.  I am ready to give up the pouch and am wondering if all this fistula stuff has to be resolved prior to getting an ileostomy. Will an ileostomy help with the fistulas? Can they do a permanent ileo or would it have to be temporary until the fistulas heal? Do I still need to be on meds with an ileostomy b/c of the Crohn's? Remicade was awesome for me but I developed the lupus like antibodies/reaction. Humira and now the Cimzia do not seem to be helping me and I am just tired of my butt being so sore. I think it would be a blessing at this point to have an ileostomy and never have to use my butt again.  All my frustration has been going on for months before this whole fistula fiasco started. I know I need to talk to my doctor but any personal experiences or advice would be greatly appreciated!!

Crohn's disease can vary a lot, so no one can predict how yours will go. J-pouch removal doesn't cure Crohn's, of course, but it does remove one target that can be particularly troublesome when Crohn's acts up. Others can talk about their personal experiences, but remember that YMMV (your mileage may vary). I hope things settle down for you!

Scott F

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