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Rv fistula

Hi I’m new to the forum and I was wondering if anyone could tell me if they’ve had any sort of fistula associated with their UC or crohns? I am in such panic that I have a Rectovaginal fistula because gas came out of my front today. I know that’s the telltale symptom of an rv fistula. Can anyone shed any light on this scary possible diagnosis?
 
Hi I’m new to the forum and I was wondering if anyone could tell me if they’ve had any sort of fistula associated with their UC or crohns? I am in such panic that I have a Rectovaginal fistula because gas came out of my front today. I know that’s the telltale symptom of an rv fistula. Can anyone shed any light on this scary possible diagnosis?


Hi there and welcome to the forum! I have a rectovaginal fistula and have had it for quite some time. I first noticed it because I started having an abnormal vaginal discharge, which turned out to be stool. I also passed gas in that area as well, but it is mostly the leaking. I know it is gross and uncomfortable but don’t worry, if that is what you have you are most definitely not alone. What medication are you on?
 

Lisa

Adminstrator
Staff member
Location
New York, USA
The development of fistulas is more common with Crohn's Disease vs. UC. It is a sign of disease being active.

Some people do require intervention with their fistulae, others (like myself) had no other intervention aside from routine visits to a colorectal surgeon to keep an eye on things until I was put on Remicade, which healed the fistulas with no surgical intervention.

I've been on Remicade for over 12 years now with no issues from the fistulas I had..... They closed up with the remicade.
 
I’m currently on Apriso and prednisone which have put me in remission. The only symptom I’m having is occasional vaginal gas which seems odorless to me. I’m hoping I can just go on Remicade or humira to try and heal it before surgery because it’s really not causing me any problems. I’m just a nervous wreck
 
Remicade is what I was on when mine closed, so hopefully that will work for you! I got of Remicade after a few years because I was having other issues and now I’m on Cimzia but unfortunately the fistula is back. I am hoping to get approved for Stelara very soon. I’ve met other people who had rectovaginal fistulas and Remicade closed theirs too. Try not to be nervous even though I know it is hard. There is always hope!
 
Thank you for your kind words. I’m a big worrier. I just don’t want it to turn into anything life threatening, otherwise I can handle it.
 
I completely understand because I’m a worrier at times too. I’ve had my RV fistula for about 3 years this time and it hasn’t caused any issues other than discomfort because of the leakage, it’s pretty gross! Lol. I was actually diagnosed 14 years ago because I started having bloody stools and also developed hemorrhoids. It was easily controlled with Pentasa but about six years ago it spiraled out of control so I had to start biologics.
 
I completely understand because I’m a worrier at times too. I’ve had my RV fistula for about 3 years this time and it hasn’t caused any issues other than discomfort because of the leakage, it’s pretty gross! Lol. I was actually diagnosed 14 years ago because I started having bloody stools and also developed hemorrhoids. It was easily controlled with Pentasa but about six years ago it spiraled out of control so I had to start biologics.


I was diagnosed by a colonoscopy and blood tests.
 
Sorry I should have been clearer, how was your fistula diagnosed? I see the doctor in 3 days and they were already thinking of putting me on Humira so I’m hoping they stick with that decision and this heals. Fortunately there’s no stool leaking from me so I don’t deal with the gross aspect
 
Hi I’m new to the forum and I was wondering if anyone could tell me if they’ve had any sort of fistula associated with their UC or crohns? I am in such panic that I have a Rectovaginal fistula because gas came out of my front today. I know that’s the telltale symptom of an rv fistula. Can anyone shed any light on this scary possible diagnosis?
I have an active fistula. It went out by my belly button, as it was one of the points of my Laparotomy. In fact it isn't so bad... I was in pain before started draining.
 
My rv fistula was diagnosed by the leakage and I saw a colorectal surgeon who performed an exam and was able to see it. My OB/GYN was able to see it as well when I had a pelvic exam.
 
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