Posted 7/11/2018 7:43 PM (GMT 0)
I've had a RV fistula for six years now. Originally I started out with a seton in it. Took it out to try Remicade to heal it, but I got c. diff. Put the seton back in for a couple years, then took it out to try a plug surgery, which failed because the skin healed around the seton like an earring in a pierced ear.
I have seen three different colorectal surgeons in three different states, and between the three there are four options, ALL of them viable.
1) leave the seton in forever. This is actually the easiest option. I know it causes discomfort and embarrassment about intimacy, but surgery can be hard on your body.
2) take out the seton, start Remicade or a similar biologic and hope it heals (this applies to if you have Crohn's). The problem with this is that if it closes on one side, then it will create an abscess and burst through again, re-creating the fistula. (Which you've done)
3) plug surgery. This is just how it sounds: tissue is taken from another part of the body, stuffed into the fistula, and they hope that it absorbs and heals it into the fistula (if that makes sense). If this doesn't work and it just falls out before attaching and the fistula recurs, you can always put the seton back in (or start biologics and hope it heals evenly and not just on one side). This is the one that I am trying next month.
4) flap surgery. This is where they take a flap of skin from somewhere and actually cover the fistula (either on one or both sides), like a patch over it. This is the most risky and I am really hesitant to do it, personally. If it doesn't work, you can't really put the seton back in because there is still the flap there. It's rare that this heals and works on its own; you usually have to do a temporary ileostomy (and have a bag) for about six weeks, then they can reattach it. But if there is ANY inflammation at all, they aren't allowed to reattach. So if you flare, even the tiniest bit, no reattachment for a while. The tricky part with this is that having the ileostomy itself will cause inflammation because it's not natural, and obviously they can't tell the difference between Crohn's inflammation or just natural inflammation, so they just won't reattach. You run the risk of having a bag for a long time. All three surgeons said the odds are 50/50.