01-31-2018, 05:47 PM   #1
manderr0402
 
Join Date: Jan 2018
Rv fistula

Hi Iím new to the forum and I was wondering if anyone could tell me if theyíve 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 thatís the telltale symptom of an rv fistula. Can anyone shed any light on this scary possible diagnosis?
01-31-2018, 06:39 PM   #2
Sharkgirl
 
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Hi Iím new to the forum and I was wondering if anyone could tell me if theyíve 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 thatís 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 donít worry, if that is what you have you are most definitely not alone. What medication are you on?


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01-31-2018, 07:06 PM   #3
Lisa
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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.
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01-31-2018, 07:34 PM   #4
manderr0402
 
Join Date: Jan 2018
Iím currently on Apriso and prednisone which have put me in remission. The only symptom Iím having is occasional vaginal gas which seems odorless to me. Iím hoping I can just go on Remicade or humira to try and heal it before surgery because itís really not causing me any problems. Iím just a nervous wreck
01-31-2018, 08:04 PM   #5
Sharkgirl
 
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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 Iím on Cimzia but unfortunately the fistula is back. I am hoping to get approved for Stelara very soon. Iíve 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!


01-31-2018, 08:50 PM   #6
manderr0402
 
Join Date: Jan 2018
Thank you for your kind words. Iím a big worrier. I just donít want it to turn into anything life threatening, otherwise I can handle it.
01-31-2018, 08:55 PM   #7
manderr0402
 
Join Date: Jan 2018
Also how did they diagnose you?
02-01-2018, 04:31 PM   #8
Sharkgirl
 
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I completely understand because Iím a worrier at times too. Iíve had my RV fistula for about 3 years this time and it hasnít caused any issues other than discomfort because of the leakage, itís 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.


02-01-2018, 04:31 PM   #9
Sharkgirl
 
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I completely understand because Iím a worrier at times too. Iíve had my RV fistula for about 3 years this time and it hasnít caused any issues other than discomfort because of the leakage, itís 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.


02-01-2018, 05:33 PM   #10
manderr0402
 
Join Date: Jan 2018
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 Iím hoping they stick with that decision and this heals. Fortunately thereís no stool leaking from me so I donít deal with the gross aspect
02-02-2018, 06:18 AM   #11
ivan.fiedoruk
 
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Hi Iím new to the forum and I was wondering if anyone could tell me if theyíve 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 thatís 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.
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03-03-2018, 10:31 AM   #12
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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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