I have had these fistulas about every 4-6 years, sometimes with an abcess beforehand and then it breaks thru to vagina. Now, full on Crohn's with a stricture in my pouch and bleeding intermittently. NOT a happy camper. This is as bad as the colitis without the cramping. On the toilet or changing pads every 15 min. I've cured the other fistulas/abcesses with 14-21 clear liquid fasts. But now I'm 3 days into a 7-12 day water fast. (Yes, I know what I'm doing). Doc is suggesting Humira or some other TNF alpha receptor blocker which I'm not thrilled about because it suppresses your immune system, and here I have been trying to support it! I'm on an anti-inflammatory diet: No wheat/gluten, sugar, dairy, eggs, soy, nightshades, coffee, alcohol, and STILL this is getting worse. I have been taking good probiotics and now from watching Listentoyourgut.com, I'm adding Oil of Oregeno. Boy, I could sure use some advice, male or female. I know guys can get other fistulas, so I'd like to hear all your advice and experiences. Also, I am going to get the book Reverse Gut Diseases Naturally by Michelle Honda. I am going to see if this water fast can kick start healing and then go on an elemental diet (YouTube: 8 Key Steps for Natural Healing of Crohn's and Colitis.). Stress is a huge factor, and genetics is just 25%. So I'm going for some acupunture and Reiki also. I know I'm starting to be on the right track. Is anyone on Humira with a Crohn's pouch? Help mmmmmmmmmmeeeeeeee! Delene
My advice is to listen to your doctor. Your dietary changes aren’t having enough of an effect for your current situation.
I too morphed into Crohn's, about 15 years into my '92 jpouch. I'm 62 YO. Fistulas, abscesses, etc. I tried a lot of homeopathic supplements, diets (sorta), etc., but nothing made a difference. Had 2 setons, still had pain, accidents - it was a real struggle. My surgeon (Cleveland Clinic) did not recommend fistula surgeries, her experience was that most fistula surgeries fail. I was not interested in biologics, as I did not consider them a long-term solution; indeed, none of my doctors encouraged them.
Finally, had the pouch diverted in 11/17, about a month prior to the planned removal, due to large abscess and wrap-around fistula. A year later, I had the pouch removed and bottom closed up. The thought was that the "Crohn's" was limited to the pouch/cuff. So far, so good, no new fistulas or abscesses, knock on wood. The stoma is working well, and life is definitely better than it was with the fistulas. I'm not pushing removal by any means, but in my case, it was a matter of now or later and as it turned out, I waited too long, but am pleased with my health at this point in time.
I hope you find your answers - please discuss further with your doctors.
I now have Crohn's in my pouch and a stricture, although I've done a clear liquid fast for the last 14 days and that has helped a lot. I also have a very active pouch/vagina fistula that is really bad, as you can imagine. Colo-rectal doc wants to do a SETON procedure. They want to also start me on Humira. I'm really hesitant about both, and I don't like taking any meds. And I don't want the SETON because I've heard of it's low success rate, as N/A. HELP. I think I'd like to start on Humira, but skip the SETON.