I have a 23 year old J-Pouch. It was a 2 step process at the time and I had a lot of complications. Over the years I have been somewhat stable. I seem to have issues every few years, then they go away/get fixed, and then something else pops up. I’m sure similar to everyone else’s story. The current issue is a rectovaginal fistula that has taken 1.5 years to properly identify. It took several doctors, a lot of imaging, multiple trips to the OR for exams, and finally a trip to see Dr Remzi. He is suggesting a 3 step re-do of everything. I currently have it scheduled but questioning if I should wait. I am concerned about the possibility of incontinence when the process is complete. I haven’t gotten an answer yet on the odds for that. I also have a 15% chance of a permanent ostomy. No signs of Crohn’s but I do have a son who was recently diagnosed so I am suspicious. The fistula was leaking for quite a while during the identifying process (needed a pad). There was talks of a bartholin cyst. But that turned out to just be the fistula. It has abscessed a few times. I have changed from Entyvio to Stelara. Currently, I only notice a tiny amount of leaking when I really delay using the bathroom (no pad needed). I notice gas more than anything and mostly when I am laying down. My pouch is functioning great otherwise. No abscesses in about a year. My question is would you proceed with the the re-do? Or wait it out more? I have young teenagers and the idea of being down and out for almost a year with busy lives doesn’t thrill me. I also don’t want to trade one problem for another. These surgeries never seem to go smoothly for me. Anyone else living with a RV fistula and letting it go? Any advice is appreciated.
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