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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Rectovaginal fistula struggling to cope



04-28-2017, 05:13 AM   #1
chesterirene22
 
Join Date: Apr 2017
Rectovaginal fistula struggling to cope

I'm really struggling with my rectovaginal fistula. I have had it a long time but it wasn't officially diagnosed until last year. (It literally took the doctors so long to work out it was a fistula even though I told them symptoms) I've been having pain with it for so long and haven't been working for three years. It feels like it has just got worse over time. I'm 27 and feel like I'm 60. I get aches and headaches all the time and pain constantly from infections. I was referred to a colorectal surgeon who put a seton in but that only made my symptoms worse. He said it was complex fistula as it is near the syphincter muscles. He also tried fibrin glue on the fistula which actually worked for about 6 days and then opened up again I felt so deflated as it felt so good to feel well again. So I made an appointment to see the surgeon and I ended up seeing his registrar and I explained that it worked for a while then it has opened up again. She said she would speak to my surgeon about maybe doing the fibrin glue again or possibly a flap. Then I get a phone call saying the surgeon wants to put the seton in again after I already said it didn't work before . I feel like this fistula will never heal I just want my life back I have a degree and want to get back to work but I feel so ill everyday 😥. Has anyone else had these problems?
04-28-2017, 11:58 AM   #2
Lisa
Adminstrator
 
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Join Date: Apr 2010
Location: New York

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What types of medication are you on? I had an RV fistula and others, and was put on Remicade vs. having any surgery etc...the Remicade took care of them for me without having to go through other procedures.
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
04-28-2017, 04:24 PM   #3
Sorebutt26
Senior Member
 
Join Date: Apr 2017
Location: United Kingdom
I'm really struggling with my rectovaginal fistula. I have had it a long time but it wasn't officially diagnosed until last year. (It literally took the doctors so long to work out it was a fistula even though I told them symptoms) I've been having pain with it for so long and haven't been working for three years. It feels like it has just got worse over time. I'm 27 and feel like I'm 60. I get aches and headaches all the time and pain constantly from infections. I was referred to a colorectal surgeon who put a seton in but that only made my symptoms worse. He said it was complex fistula as it is near the syphincter muscles. He also tried fibrin glue on the fistula which actually worked for about 6 days and then opened up again I felt so deflated as it felt so good to feel well again. So I made an appointment to see the surgeon and I ended up seeing his registrar and I explained that it worked for a while then it has opened up again. She said she would speak to my surgeon about maybe doing the fibrin glue again or possibly a flap. Then I get a phone call saying the surgeon wants to put the seton in again after I already said it didn't work before . I feel like this fistula will never heal I just want my life back I have a degree and want to get back to work but I feel so ill everyday 😥. Has anyone else had these problems?
chesterirene22 I feel you
I'm in a similar position, but mine's not a RVF. But is a very complex fistula that runs through my sphincter. It's horseshoe shape and has tracks and collections of tracks coming off it!
I just had my seton replaced yesterday!

This won't be the end of it though.

I've not yet been diagnosed with Crohn's or anything either so I'm not on any medication. XxX

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