Fistula post-proctocolectomy

I was diagnosed with UC in 2011 and had everything removed in 2012. I've been doing really well since then but now I have a fistula going from where my anus used to be to my vagina. I have a seton drain in and I no longer have any pain or drainage from the fistula. My only concern is how this even happened. I'm waiting on results from blood work that was sent to Prometheus to see if I actually have Crohn's. My GI scoped my small intestine yesterday and everything looked great (which I expected since I don't have any symptoms with my GI tract). I wouldn't be surprised if I had Crohn's, but I also don't really think that I do.

Has anyone had a fistula or abscess after a total proctocolectomy? I know it happens with j-pouches but I've never had one!

It's pretty rare, but there are a *few* cases where people have UC but also develop a fistula. My original diagnosis was UC, but I got a RV fistula and the diagnosis was switched to Crohn's (which made a bit more sense with the strictures I develop in my esophagus from reflux causing scarring).

Just wanted to say that it stinks that you have a RV fistula, too. I had my seton in for quite a while. We removed it to try to do a plug surgery, which failed because the skin had healed around the seton similar to a pierced ear. So now I just have the fistula, no seton. I don't even notice it's there most of the time, tbh. Minimal, occasional pain. Drainage only when I'm doing a prep. Passing gas vaginally, but compared to all the surgeries I could do to try to "fix" it that would probably fail anyway, I'm good with it!

beave said...
"from where my anus used to be to my vagina..." Don't you still have your anus? In a proctocolectomy they remove the rectum and colon but not the anus, right?

Do you have a stoma in your abdomen?

A fistula from the anus to the vagina is a sign of perianal crohn's disease and a sign that you don't/didn't have UC.

Maybe that was the wrong term. I don't have an anus. My GI confirmed that last week. He was thinking I might have a little bit left (like sphincters) and that's why the fistula formed, but everything was removed.