So have been living without a seton for my fistula for almost two months, since my last one untied and broke.
While I was on steroids, after it came out, things were awesome... but one can't live on steroids forever. Too bad.
It still is too *fluctuating* for me. Last week was not comfortable. This week is much better, but not "awesome" like the steroids make it. It's definitely way better than it was at the start, and nearly liveable without the seton, but there are just times when the skin on the outside wants to close in some drainage (again, WAY less drainage than before, but still.) That's when it hurts, then it opens up again, and things get better. So there's still a cycle, a much less angry one, but it's definitely still there.
So, I've decided to go back and get another seton. My CRS said I could get it back in, then try it out again in some months... he said we could do that indefinitely.
My GI wishes to keep me on Humira (because my other issues have abated, no more low grade fevers and general ickiness, and the fistula "overall" is better). He's planning to re-scope me in October, and see how the "whole picture" looks then.
While I don't LOVE the seton, I do like that it keeps things at bay. My fistula is mature, if only the stupid outlet where the skin is would stay open and cooperate, I'd not need a seton again!!