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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I may be misreading your post, but it sounds like you currently have very little trouble from the fistula. Have I got that right? You've (appropriately!) identified the risks and major nuisance from re-do surgery, but what benefits are you reasonably hoping for? The expected benefits have to more than offset the risks and nuisance.
You are correct. I was more eager to fix things when it was abscessing often and I had to wear a pad all the time. Now that things have calmed down, I am not sure I want to go through with a complete re-do. I guess the question is what am I risking if I hold off? Risk of abscess I assume. Anything else I am missing?
If I thought the improved situation were due to effective treatment (with Stelara) then I’d strongly consider waiting until I had evidence that the treatment wasn’t working. Is the timing of the improvement consistent with initiation or change of the biologic medication?
Things were already starting to slow down a little when the switch to Stelara was made. I had an abscess that was cleaned out. So I’m sure some of it was the healing of the abscess. I’m not sure how much the change to Stelara helped. Regardless it has been 9 months of Stelara. Symptoms are still present but mild. The problem is definitely weird. Just not sure the benefits outweigh the risks as you’ve stated.