Desperate for help. PB4 - or anyone with recto-vag fistula!!

I should probably post on CD board but you guys know me better.

I can't believe things keep getting worse for me. Had IVIG, bowel settling, I thought I could focus on getting stronger for my trip in 2 weeks.....down 17lbs, but was feeling optimistic until.....Thurs I started passing gas through my vag. I thought this was a just a joke; didn't realize it was another insanely cruel part of this disease. I couldn't believe what I was reading. My general surgery who tended my perianal abscesses is sending me to a colo-rectal surgeon; who knows how long that will take.

In the mean time, it happened again in the middle of the night and I instantly ran to vomit in disgust; fear; shame.

I don't know what this means? does it mean Illl only pass gas or will I start pooping from there too? What does this mean for intimacy? Since last night my vag is slightly burning. But all day yesterday I was checking up there every 5 minutes to see if I was pooping so it could be a bit raw from that.

I'm in shock, I'm tired and weak and devastated to the point of physical illness.


I'm seeing my family doc today and going to ask her to examine me.

See GI on Monday----but I'm in a panic. Is this something I go to emerg for? Is there surgery?

If someone wouldn't even mind sending me a private email to help me out that would be great. I don't know what to do or expect now.....

Will I be able to go away? Without D, absecess and now this???

Thank you. I'm obviously scared.

You poor thing, I can't help as I know nada about it, in fact Ive never heard of it.. I hope you get some help, let us know how you get on.

I hope the gas turns out to be from something other than a fistula.

good luck

Quincy: I cannot tell you how grateful I am that you would reach out on my behalf.

My blood is boiling.....

I haven't passed gas today so I don't know what's happening but yesterday when I sneezed there were air bubbles coming out. I woke again today with the abscess....

I'm also pretty positive any form of enema is leaking out through my vag:( I think it's causing a yeast infection or it could just be getting burned from the gas/enema.

My bm's have slowed and are forming so that's good....but I can't help but feel so humiliated and petrified that the fistula will get bigger while I'm waiting on a colorectal surgeon. Trying to remind myself what my family doc said but it's hard when things don't feel "right" down there.

Hey U B Tough, sorry I just saw this topic you started...

My experience (yes definitely terrifying, with all the same worries you're having)


I only passed Gas and nothing else but did have a very strong ammonia-type smell from there which was noticeable after wiping with TP from going just pee. It was embarrassing and horrifying to smell that odor and feel gas passing through the V and not be able to control/stop it from passing all on it's own with no warnings and usually with gas sounds accompanying it. Way worse than farting out the right hole. I'm cringing for you cuz I'll never forget it as long as I live.

I could not nor would I even attempt intimacy as I was in such unbearable pain in my crotch area and had enough trouble moving my feet normally in front of one another like a normally walk, I had to take baby steps literally due to the groin and crotch pain I had.....I was also suffering with severe constipation and was terrified of stool ripping through my V.


I finally started smoking weed which helped with the pain for all day and for sleeping at night until (and still after) I could see my GI, he sent me for an MRI to confirm my RV fistula (one fistula with a few branches off of it) He got me on Humira and that quickly (along with smoking weed) got my fistula and Crohn's-Colitis into remission....then we were able to confirm my GI's suspicion he had about 1 yrs into having IBD that I had also developed my IBS which is nothing compared to having a fistula.

He never suggested a surgeon right off the bat, he said we'd do the MRI and the Humira first and see how that goes, luckily Humira cleared it up (I think the weed may have also played a positive roll as well, and my GI says he wouldn't doubt it, he's all for trying/doing anything under the sun so long as I find relief, that's all my GI cares about is my relief more so than what is causing relief so he's very open that way which is exactly the kind of GI everyone should have.

I'm not sure what else to suggest because I can only go on my experience that I had...he did tell me that once a tract forms, it's basically there for life but just closes up due to meds (in my case) or surgery if necessary and sometimes neither will necessarily help so it's important to get the MRI to show exactly where the fistula(s) is/are and what degree they are at and to decide which route to start with (either meds or surgery) is the way to go depending on MRI results...that seems to be how he deals with his patients with IBD and associated issues. He also said that if I was to flare again, depending on how severe my flare was would likely depend on if the fistula was to re-open or not and only time would tell.

Sending you lots of extra BIG (((((((((((((((((HUGS)))))))))))))))) TO YOU and sending lots of good vibes and good luck your way to find quick healing.

I had a RV fistula that at the beginning seemed very small only gas passed and no pain. I went on Humira and it closed. The entire time I was on Humira it seemed to stay closed as I never noticed it again even when I flared on Humira. Then Humira stopped working and while I was on Simponi and MTX I had a horrific flare with the worst rectal inflammation I ever had. Then I started passing gas and bloody mucus through my vagina, never poo. Then I got what I thought was a yeast infection and was in horrible pain. My gynecologist said it wasn't yeast it was the Crohn's disease , most likely from the RV fistula. I was similar to PB4 in that I couldn't even walk normal it hurt so much.

I already had a colorectal surgeon from my previous surgeries and when I told him what was going on he ordered a CT and it confirmed what we knew. I was already at the end of my rope with meds and requested to have a total proctocolectomy and he agreed. In that sense I was lucky because even without the RVF I wanted the surgery and it was easier to repair since they were taking my rectum out. He surgically repaired my vagina and closed the fistula. It's 6 months since my surgery and seen my gyn dr twice and it is still closed. I'm told it's unlikely to reopen since I no longer have a rectum.

There are a few folks on the Crohns bored with them and they manage them. When not flaring and they want to be intimate they still have intercourse. It is my understanding that sex will not make it bigger. People approach it different ways. Some have them repaired, some just manage life with it.

It doesn't surprise me that the general surgeon doesn't want to deal with it. I have even heard some colorectal surgeons not wanting not to do it and referring back to a gyno to handle. When I saw my Gyn after surgery she was actually surprised my surgeon did the repair.

Vaginal births cause more RV fistulas than Crohns or UC. So try not to feel too distraught and disgusting, I remember how awful it made me feel but they do happen and are more common than we know just no one talks about it.

In my experience trying to self treat is not a good idea in this situation. Once you have a fistula they can be hard to close and the longer there is rectal inflammation the more chance of it getting worse. The only medications I am aware of that have closed fistulas are Remicade and Humira. Other option is surgery. But again if you have a surgical repair you need to continue to manage your disease and Inflammation to keep it from opening again.