Hi! I have FAP/Gardner's variant and had my colectomy with j-pouch rectum in 1984 when I was 9. I've never had problems with my pouch rectum besides a few bouts of pouchitis years ago. I began having some soreness and pain in my buttock area three months ago and thought it was from riding a stationary bike more while I was recovering from rotator cuff surgery and wasn't allowed to attend my regular interval training exercise classes. I ignored the soreness for a month until it got worse and then I discovered a hard bump deep under my skin next to my rectal area. I went to my GI doc and then on to a colorectal surgeon who had me get an MRI, which showed I had a large peri-rectal abscess with two fistula tracks.
I've never had a fistula or a peri-rectal abscess in the 34 years I've had a pouch rectum and I don't have Crohn's or colitis so I don't have the risks for the inflammatory issues that normally cause fistulas in pouches. I had my yearly screening sigmoidoscopy and endoscopy in March and for the first time since getting my jpouch 34 years ago, I had two polyps on my rectal cuff that the GI doc snipped of. I believe the removal of the polyps may have put a hole or two in my pouch, allowing the stool to leak, the formation of the abscess and the fistulas. To my knowledge, fistulas don't usually happen so late in the life of a j pouch and especially with someone who doesn't have inflammatory bowel disease. I am very perplexed why this has happened.
I am wondering whether anyone else with FAP and j pouch has had a fistula or rectal abscess and if so, how the treatment worked for you, and what treatment you had. I am finally scheduled to not only drain the abscess, but put in a seton (string drain) to allow the fistulas to heal. I'm hoping I only have the seton for a month or two but have read that some people have them much, much longer. I am very worried the fistulas aren't going to heal and that I'll have to end up diverting my bowels temporarily to an ostomy. It wouldn't be a big deal but I worry about the future and life span of my pouch rectum going forward if this happens and the fistulas don't want to heal. This is new territory for me and I have no idea why this happened and why it is now. It seems these fistulas usually for within the first year of the j pouch, not 34 years later. I'm 43 and would love for my j pouch to last me at least another 20 years.
If you have any info, similar story, or advice regarding this situation, I'd greatly appreciate it!