Fistula Advice

Sorry, I don't know about rectovaginal fistula, I had a regular old Fistuala-in-ano. It's what brought me to HealingWell in the first place.

I was advised to post in HealingWell's Crohns forum as many more people there are dealing with complicated fistula. When you get a minute you should go there and post your question and will likely get more replies.

I do believe there are a few people here who have rectovaginal fistula. You might need to bump your post a few times before it gets seen by UC folks with experience with fistula because there are not a lot of us around.

Good Luck

I don't think NCOT has an RV fistula... I think Eva Lou or one of the other UC old timers might have.

What are your symptoms/issues? How is it being treated? How was it identified? Need some more details...

I have a sixth sense for my name being mentioned <_<.

Pluot's right, I don't have an RV fistula, but there are a few on the Crohn's board who have them. I have never had a fistula, despite having severe Crohn's colitis for years - perhaps it's 'cos my rectum was only slightly affected.

If you have UC and you have a fistula, I would also strongly suspect Crohn's. I know there are other causes of fistulas, but Crohn's is the most common one.

yup, here I am, with my recto-vagianl fistula that I've had for about 3 years now...!!!! Lame. It started with an abscess, which developed during a flare. Abscess burst, became a small fistula. I was put on Flagyl & Cipro to prevent infection in the abscess, sat in epsom salt baths 2-3x a day for a week... it healed up nicely, but the fistula is still there. I was on Remicade at the time, which is supposedly good at healing them- did nothing, have since switched to Humira, which has also done nothing to heal it. I have seen 2 surgeons to discuss surgical repair- the success rate is not great, & I'm generally always in some state of inflammation, so they won't even attempt repair with inflammation, as the plug/graft/whatever, won't "take" in inflamed tissue. The first year or so it really bothered me, mentally & physically. Now it only bugs me when I'm having lots of loose bm's, then I do get a lot of drainage. I've had to wear a pantyliner daily since it developed, due to drainage. Mentally.. yeah, it's gross, but I try not to think about it too much! No one could diagnose it at first- no one could see it, not even on a CT scan. Finally my gyn saw it, it's visible to the naked eye with a little poking & prodding. The biggest issue I had was that after seeing surgeons to discuss possible j-pouches, etc- every surgeon told me I'm not a candidate due to the fistula- regardless of how "common" they may be in the general population, in someone with IBD they signify Crohns. Even though my GI thinks I have UC, every biopsy, etc. show UC patterns. That was sort of a bummer to hear, I always thought a j-pouch may be in my future. I guess for "advice" to offer- if you think you have one, you probably do- insist on a diagnosis, it'll probably be found by your gynecologist. Most GI's have no clue re. recto-vaginal fistulas. Ask any questions you like, vent away, I totally understand! It's been the toughest part of my UC, for me, worse than any accident, etc.

I know that- but to a colo-rectal surgeon, the presence of a fistula leaves the UC vs. Crohns diagnosis so sopen, that any reputable colo-rectal sugreon will not do a j-pouch on a woman with a recto-vaginal fistula. I've said this over & over.... No one is telling me I have Crohns, they all stick to a UC diagnosis. But think about it- if you're a surgeon, & you do a j-pouch on someone who is later definitively diagnosed with Crohns... well, that's a big problem. Obviously your particular fistula just happened on it's own, no IBD prompting it. I'm not sure what point you're arguing.

Whether it's Crohn's or not, RV or pouch-vaginal fistulas are one of the absolute worst complications to deal with with a j-pouch, so I think that's reason enough not to do a j-pouch. I was suspicious that I may have had one so I had a CT, a pelvic MRI, and an exam by a gynecologist before I had my second surgery to remove my rectum and create my j-pouch. I absolutely would have elected for a permanent ileostomy if it had turned out to be an RV fistula.

I think we scared the OP away :)

I had a repair done, but it didn't fully work. I had the LIFT procedure, where the surgeon goes into the space between the two sphincter muscles, ligates the fistula tract, and sews the ends. The original (long) fistula tract closed, but the inner opening of the fistula (the one in the anus) was fairly large, and it didn't close. So now I have a very, very short fistula tract that is bascially the incision the surgeon made during the procedure. It's barely outside of my anus and it really doesn't cause me any problems. I just have to wipe with a baby wipe after I have a BM to make sure it's all clean, and I'm good to go.

The surgeon did say that it'd probably be pretty easy to fix with the procedure where they just lay it open, but given that it doesn't bother me, and that there is a risk of incontenience with any procedure like that, I'm probably just going to leave it alone.

I think it's low enough that it would be OK. I mean, the internal opening of it is so low, that poop really shouldn't be in that area unless I'm in the act of having a BM.

And yeah, it's frustrating that there aren't better fixes and it's really sad that some women are shunned for something they really, really can't help.

The reason I had a c-section with my daughter was because of the fistula. Even if it had healed correctly, my CR surgeon said he still would have recommended it, because if I'd torn badly during delivery, there'd be a huge risk that I'd be incontinent.