Anyone ever recovered from a "recto-vaginal" fistula?

[lizzy]

I have ended up with a recto-vaginal fistula, I was just wondered if anyone has ever successfully got rid of one, recovered, it disapeared or had surgery to fix it and it worked!
I am slightly despairing with it. It was left open by some thoughtful gynacological surgeons and it means I have no real control over what might decided to come through it, wind is particularly bad as my disease activity is severe.
I had a plug put it but it didnt work for whatever reason, apparently it only has a 30% chance of working. I think it would have stood a better chance if I had been on TPN when it was done so there wasnt food stuff going past it, or less at least.
It is causing me a lot of stress as I feel like I can't be with people other than my parents for longer than a few hours because of the unpredictability of the wind passing through.
I don't know how much I should be pushing to get it fixed, can it be operated on or should I just give up? I had infliximab but it never really made any difference.
Are there any answers?
Would love to hear from anyone who has had this. I've also got another one with a seton which is a bloody pain but one of my many hilarious symptoms and fairly low down on the annoying scale compared to this recto-vaignal one.
Thanks for your replies in advance.

 

[Jennifer]

I've never had one but I found a couple of older threads for you on the subject since you haven't gotten any responses yet. I'm gonna tag a couple people too in hopes that they might have more info to share. Sailorluna, kello82 any insight to share?

http://www.crohnsforum.com/showthread.php?t=4588
http://www.crohnsforum.com/showthread.php?t=40275

 

[LisaL]

I can't help you here either, except to say that I hope you find the right answers to your questions soon. I just wanted you to know that I was here and thinking about you.
-Lisa

 

[Sailorluna]

Thanks for the tag Jennifer-

Hi Lizzy,
I am sorry that you are dealing with one of these. I have two fistulas. One is peri-rectal and one is rectovaginal. I believer the vaginal one arrived after the birth of my first child before I knew that I had crohns. The obgyn led me to believe that it was kind of normal.
Anyhow, that was 2003. I have periodically passed gas and stool from there. It could be months in between but never really went away.

In 2010 I went in for seton placement for the other one and while he was in there he discovered the vaginal one and stuck a seton there as well. He only left the vaginal seton in for a couple months then took it out. So... its still there. Sometimes passing nasty stuff through that I can not control. Only keeping the D under control helps.

My surgeon told me that until the rectal disease is under control he will not discuss surgery to fix it. He also said that any surgery to fix it is very high risk. He said that active crohns can prevent it from healing correctly and tear the opening between rectum and vagina making a larger hole. He also basically said that he will not be the one to do that surgery even if that opportunity were to arise. He said that one should find someone who specializes in that kind of surgery and find out how many they have done and the success rate.

There is another user who just had a flap surgery for this and it tore her open and she is now passing solid stool. http://www.crohnsforum.com/showthread.php?t=45415

I am sure that this is not what you wanted to hear and I am sorry about that, but please be careful with any surgical decisions you make. At this point I expect to have mine for life. If you have questions or just want to talk drop me a note. Good luck.

 

[Bryonyboo]

I have a recto vaginal fistula that was only discovered when I had a seton put in my peri anal fistula, I now have a seton in both. Even with the seton in I frequently have bubbles of gas coming up through my vagina and and a smelly discharge, which is very horrible and makes me feel dirty.
I am having surgery to lay open the vaginal fistula to get rid of it. I don't have any active disease at the moment, just the fistulas so that is why the surgery is acceptable. My surgeon expects me to make a full recovery and for the fistula to eventually go, even of it takes another 2 operations, so keep hopeful, there are some success stories out there!