So I've battled this perianal fistula for a time. Over time, next to it, I developed a granuloma. Not surprising to anyone involved, it seems. That thing hurts, especially lately, a LOT.
Steroid tapers in the past have generally made it less painful. At one point, it nearly disappeared! I was ecstatic. But post steroids, it gets sore again.
New surgeon suggested silver nitrate to burn it away. Tried one today and oh my GOD the pain. I don't think I can stand another one. Granted, it has been way more painful than normal, lately, and this past week, I've felt "bad" in that "can't explain it, weird IBD" way (tired, bloated, just icky belly way). Hard for me to say, but might be a flare kind of way (flares with UC were unmistakable; whatever these are without a colon/new IBD things are way more vague and make me unsure of things). New surgeon also seems to think I need to remove the seton for a break. I have an appt Thursday to discuss it further. Pretty certain it's not pouchitis: bowel habits overall, apart from bloating, are unchanged.
Going harder core FODMAP again to see if it helps. I *did* eat some nectarine today! and they're in my no-no list, so that might be a little of the issue today.
GI called me in a prednisone taper, but I HATE steroids, though they've worked in the past to settle that area down. But I've gained 5 lbs I can't shake because of them, even watching and going to the gym. I truly don't think the Humira is doing much, but he wants me on it til October when I have my scope. Think I'll break down and go back on the steroids. Ugh.
Not sure anyone will have ideas or answers, but thought I'd throw it out there to see. I feel pretty icky today, and have felt poorly/off since last Sunday.