Hello, I've posted before about my perianal fistula, I developed an abcess that turned into a fistula and my surgeon is suspicious that I have Crohn's disease, so he says he would rather not do a surgery unless absolutely necessary!
My question is has anyone on this site, or anyone you know PERSONALLY, healed a fistula without surgery or medications (humira or remicade)? I've heard stories about fistulas healing from Paleo or SCD diets and/or oregano oil, etc, but have never heard from anyone personally. Just wondering since seems like I can always find the "success stories" online, but would like to hear a personal story Smiler
Original Post
I've had a fistula for 2 years now. I've read a lot about them. It's pretty darn rare for spontaneous healing, from what I've read.

Reason being is your body doesn't recognize the tract as NEEDING to be healed. It is mucosa and your body just sees it as part of the bowel.

My surgeon will not cut me to do a fistulectomy, etc., because he says we (J pouchers) have already taken a sphincter hit, and the risk of incontinence after surgery is high. I don't wish to be an incontinent 40 something, so I currently live with a seton (I've had 3), and we are trying Humira to see if my other IBD issues chill out and *maybe* the fistula will heal, too.

My newest seton was placed yesterday. For two weeks after the last one was pulled, things were normal feeling, and it was wonderful. It never got as bad as it did in the beginning, but it started hurting, so he replaced the drain with a smaller one. I have no pain today at all.
Rachel-
I have an Rv fistula and seton for about 8 months. My doctors decided to try a biologic to help calm down inflamation-- I recently had cuffitis. I think my surgeon may think I have crohn's but I haven't been given an official diagnosis of cd.i think I'm on a somewhat similar path as you treatment wise. I started taking Cimzia and I'm not sure if it's helping inflamation but it certainly makes me feel like crap in terms of nausea and fatigue. I'm curious how your responding to humira since I think you aren't officialy dx crohn's either. Also what exactly made the doctors place another seton after you removed them? Thanks so much, I appreciate your info.
For two weeks after it was removed, things were wonderful. Then, I started getting some pain at the exit site, not as bad as when things started, but some discomfort (though twice during the times after removal, I had two bad days of pain).

The skin just wants to close faster than the inside of the tract, and just traps the mucus. My drainage now is WAAAY less than when I got the seton in in 2013, but it was enough to get trapped when the skin finally started to heal shut.

So I returned to the seton. The new seton is smaller, like it first was, and it's not bugging me.

I was devastated when this all started, and is till have my days when I get depressed, but I feel better equipped to deal 2 years in.

Also, my CRS said if and when I want to try to remove the seton again, he's willing to try. Whatever I want. He still recommends periodic dilations, 3x a year or so, since I've had issues with that in the past, but I self dilate a few times a week, and things seem ok recently (knock wood).

I see GI in February, to see how the Humira is keeping me. Will have to wait til then to see if we keep on it or not.

Good luck.

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×