It seems without oral steroids, I eventually end up with difficulty passing stool. I've had my fistula for almost 3 years now; my current seton is 8 months old. This has progressively increased in frequency for me.
My new surgeon does not think it's functional. He's certain it's inflammation. Especially since I can pass the Hegar dilator, and he had no issue passing a scope or finger. I believe the inflammation issue is similar to someone with an airway issue due to say asthma or an allergic reaction: they can't breathe/move air, but we can put an endotracheal tube in them and establish an airway, because there's no structural issue, just swelling of soft tissue.
Sometimes when I can't pass stool, it feels like my sphincters fail me, too. It's a terrible feeling, but it seems once I get on steroids, it eventually goes away, so I doubt that's it. I think it's just swelling issues.
I had a miserable early ish to mid November. I am now tapering a fast oral steroid dose, but GI decided to stop Canasa and give me a run with some Anucort suppositories.
They seem to be helping, however, I also have started taking Miralax 2X a day to keep things as loose as possible. I know that sounds bizarre to those who want thicker stools or less stools, but I'm continent even at liquid stool level, and prefer that.
I haven't gotten a true full on cuffitis dx, because while there seems to be inflammation, I do not have classic cuffitis symptoms, overall.
Anyone with any experience with Anucort or any of these symptoms? Anyone with a fistula who responds to steroids?