I'm completely continent, with hardly a nighttime trip to the bathroom and zero seepage, so I accept his viewpoint. I live with a seton. He said we could periodically remove it for a break, if I want.
I know RV fistulas are different, and their repair likely doesn't affect the sphincters like a perianal one, but it's surely a question you might want to ask about.
Have they considered a biologic for you? If an IBD related fistula, Remicade and Humira have had success in fistula closure. It's not 100%, but worth asking. Tried Humira here, and while "better," it's not closed mine.
I have an RV fistula and go to the CC (Dr. Hull). She told me - with absolutely no doubt - that my fistula will not heal on its own. Something to do with being extremely angled... She offered up several options, of which she honestly told me had very little chance of success, such as the LIFT, and the other usual fistula surgeries.
She made it sound as though the only way to rid myself of the fistula - and this wasn't even a 100% sure thing - was to have a pouch redo (or removal). Since I will not go through a redo, I am living with the fistula and seton and have been for 3+ years.
I am disappointed you're not getting more info from CC, and that they are not "insisting" on a seton in the meanwhile. You may want to think about trying another seton which could lessen your pain and prevent any abscessing. They are supposed to help with the healing process, as well. Is it possible that the first seton used was not of the most comfortable material? Mine is "rubber" looking (yellow), and there are 2 there for redundancy. I had it changed last year, and the new placement was uncomfortable for the first month or so, as I believe it was tied a bit tighter, but I've adapted to it and no longer feel it.
If you haven't seen Dr. Hull yet, I highly recommend her. She is VERY informative, very thorough, will not sugar coat anything, and will talk with you for as long as it takes to help you understand every option.
So sorry you're going through this.
There ARE different kinds and sizes of setons out there, ranging from surgical thread to larger plastic.
You may almost have to turn it, now and again, to keep it from getting "stuck" in its tract. Eventually the tract should scar with the seton in, if you ever get another one.
I've never been to CC. I just know for me, 2 surgeons from 2 different hospitals (one my original surgeon) said that for me, surgery wouldn't be a great option because of the sphincter thing. So I deal and live with a seton, too.
I also have an RV fistula. It's been 8 years now, and my pouch is 19 years old. The only thing different about me is that I don't have, and never have had a seton. I'm not even sure why my surgeon never recommended one. In any case, me and my fistula get along as well as we can. It's not fun, or anything like that, but it only really bothers me when I have inflammation from cuffitis.
Like n/a, my surgeon believes most attempts at a repair are unsuccessful, and because my pouch is otherwise perfect I am choosing to live with this Rv fistula for now. In my 9 years I've never had it close up and form (or re-form) an abscess, so I guess that's why the seton conversation never came up.
Hope you get some answers and relief soon.
How do you find a doc who will prescribe biologics to heal a fistulae possibly caused by inflammation at the pouch (when you have a UC diagnosis, not Crohns)