Hi Lixxie - thanks for the update. 5 years! I'm sure you have your list of questions ready to go. Are they still going to continue looking for a fistula? Is the surgeon going to go in, look, and if he can see it, repair it? What procedure would he perform if he found the fistula? Chances of success, etc. Are you still having symptoms?
I'm still living w/my fistula, have had the seton 5 years now. I'm 60 now and simply am not feeling an urgent need to go through surgeries in an attempt to fix it. If I were in my 30's, I'd probably have different thoughts, though, idk. The symptoms of my fistula are about the same, waxing and waning.
BTW, my last EUA a year ago resulted in a positive diagnosis for Crohn's, based on the biopsies. However, I don't feel as though I have any Crohn's symptoms (knock on wood), except for the fistula. Like you, cuffitis as well, and as always, some inflammation in pouch, but nothing that warrants antibiotics.
Keep us updated, and good luck!