Hello all! I'm going to be meeting with a surgeon in a few weeks for a fistula. I have discussed it with my GI and he believes its definitely a rectovaginal fistula and wants a surgeon to check it out. I've never had one and don't know what to expect with this visit. I usually have no anxiety when it comes to Dr appointments, but I'm actually quiet nervous for this. I have no clue what I'm going into. And, since I live so far from the offices I expect them to do as much testing as they can while I'm there. So, my question is what kind of tests will they do? I've heard about the dye test and scans but don't know what the entail. Any info would be greatly appreciated and would help ease my mind. Thanks again!

i've been trying to figure out if i have a rv fistula for the last couple months. my doc has done many tests, including inserting dye in my pouch to see if it comes out of the vagnina, scopes of my pouch and vagina, several catscans to check for abscess (which i have). are you having drainage vaginally? none of the tests have hurt so don't worry about pain or anything. i meet with my surgeon tomorrow and i think he's going to tell me that i have to get an ileo to let this abscess/ fistula heal, which i'm pretty bummed about. hope you don't have to go that route. keep us posted...

Hi!
The top opening of my r/v fistula, I think, can be seen with a scope of the pouch (it's right where the pouch is sewn to the rectum). The outside opening is obviously and draining, usually. Mine shows up in the labia so it's very easy for the doctor to see in an office.

As for most tests, all mine were done in the OR (dye test, putting in a seton, trying to glue it shut). They are very quick procedures.

Now I'm on Remicade to try to close the fistula tracts because all the surgery hasn't worked for longer than a few months. Before that, I was trying lots of sitz baths and Flagyl to keep the infection under control.

Be brave! My guess is the surgeon will look as best he can and then may schedule you for a CAT scan or dye test after that. Fistulas are so tricky and I just wish mine would go away!

Laura

Hey everyone, I've now met 3 times with the surgeon.
First time he did a rectal and vaginal exam and confirmed that I did have a fistula. He gave me a prescription for cipro, and cortifoam, and told me to try metamucil 3x a day. Second appointment was for a scope (to check and see how my pouch was doing, it had been 4 years without a visit) and found that things were still slightly inflammed and the fistula looked the same.
This past visit he told me to try nytroglycerin ointment three times and day, conitnue the cirpo and metamucil (which has been really helpful in bulking up my stool)
Not to get to much into it, but he is the number one rectal surgeon in my area and seems to be very knowledgeable in this area. But, he is lacking the compassion and comfort I'm used to with my GI. He told me there was nothing I can do to repair it. My only option is to have a permanent ileostomy..Without any mention of treatment. He told me remicade won't work (since I took it for my UC years ago, he said it doesn't work the second time around) and told me surgeries would be useless.
I understand the difficulty in repairing fistulas but don't you think I should try something before giving up on my pouch, which has been terrific these past 4 years?
I'm really at a loss at what to do. I'm only 23 and feel like getting a permanent ileostomy when my jpouch is fine is kind of drastic. I'm meeting with him again in 6 weeks to do another scope. Should I mention that I want to try some other treatments before giving up?

Thank you guys. Anything you can tell me about your own experiences will make me want to take a bit of a stand and get this damn fistula repaired! Thanks again.

Oh, I'm sad to hear what the doctor said. I refuse to give up my pouch. One surgeon said that to me, but two others said no way. How bad is your fistula? It's just something I deal with. Yes, I'm on Remicade, but I think it still drains out pouch contents. Lovely, right? I think the reality is that they don't go away, but can you live with it? I'm dealing just fine most days of the year and I'm happy to NOT have that ileostomy. I'll deal with the fistulas. I was about 20 when my first one showed up (19 was my pouch surgery) and now I'm 32. I have a seton to keep the track open a little to keep it from getting infected and that's been in over a year. The Remicade should be trying to close it, but it's not really doing that because of the seton, in my opinion. I've tried all the surgical options and they held for a few months, but I always ended up back to square one. I've seen 3 surgeons for them (based on moving around). It's interesting how one said take out the pouch, one did glue and setons, another recommended Remicade. Maybe get another opinion? I wouldn't give up your pouch yet, but I don't know how bad you're suffering. Thankfully, my pouch works great. It's just this blasted 2" area!!

Hang in there
Laura

The surgeon didn't really tell me how bad the fistula is. And I really can't live like this. All the UTIs and infections are really taking a toll on me mentally and physically. I haven't felt comfortable to do anything sexually in over a year. But, my terrificly awesome boyfriend of 6 years is great about it. But there is no way I can live like this knowing I didn't try something. I'm thinking about heading to Boston for my second opinion since I live only 45 minutes away. I admire all these tough women who can live with these damn fistulas.

Doctor Ronald Bleday is extremely knowledgeable in fistula repair and graciloplasty surgery (for fistula repair). He is an excellent colorectal surgeon at Brigham and Women's Hospital.

Caty

Ladies, I feel for all of you. I'm almost a year into my fistula journey. Still not sure if it's R-V, R-Labial, or R-something else. The CR Surgeon who made my jpouch didn't order any tests, just suggested I should have the pouch removed. It certainly wouldn't be the end of the world, but I would at least like to hear if there are viable options.

I'm going to Cleveland this week to have more tests done and hopefully find a tract and get a plan of action (they couldn't find the tract back in Feb.) Unfortunately, from what I've read on fistulas, I don't have a lot of hope for an easy answer; particularly when there are options I am certain I will say "no" to. I'll report back any information that is worth sharing.

PLEASE tell your doctors to look into the mesh repair being done at AZM in Maastricht, NL!!! It is a new-ish technique, I was among the first 10 women it was tried on. MUCH higher success rate so far and MUCH less invasive!

Gin

Gin,
Love Holland, lived there for 5 years, in The Hague. I visit Holland at least once a year. My husband has a conference there in May and I'd like to make an appointment with your surgeon... You don't mention what your results have been? I have a recto-vaginal-bartholin's fistula. I'm dealing with it. Not a happy camper about it nor about its interference with my love life...
What's your surgeon's name????
T

Don't give up! I have a RV fistula and I've had one surgery attempt to fix it. They pulled down my j-pouch to try an cover the fistula which is not even an inch wide, its very small!


Unfortunately for me, this surgery did not heal the fistula. I am now looking into another surgery called the Gracilis Flap. Definitely look into it. I'm told this is pretty much my last option but I think I'm going to give it a try. I have not had the opportunity to test my pouch out yet since I just had this surgery in February adn got the fistula from the surgery. This surgery involves a plastic surgeon who takes muscle from your leg and puts it at the fistula site to repair it that way.

If for some reason this one fails, I will most likely have my ileostomy permanent. But there aer options! Don't let your surgeon tell you otherwise. I don't know if yours is a bad fistula or what but mine is pretty small and very low so there are possibilities and way you can try to heal it.

I would recommend getting a second opinion. I did and it was the best decision I made even though I like my surgeon adn trust him, it's nice to see someone else's point of view.

Good Luck!

And to add, I'm 24 so we're both very young! I had leakage from my vagina which was extremely painful, I dont anymore with the bag back on. I get a pouch study done where they fill your pouch with liquid. For me, I knew I still had the fistula because I could feel the liquid come out of my vagina.

There are risks to the surgery I may be having, the graciis flap one. But there are risks to any of the surgeries we encounter.

I went to Brigham and Women's Hospital for my second opinion with a colorectal surgeon there. He was the one who told me about the gracilis flap surgery. Please look into it. Their plastic surgeons do these surgeries up to 2x a week. I'm definitely considering doing the surgery in Boston.

Message me if you have more questions or just want to chat about our experiences

Just wanted to let you know I'm a success story with a surgery to repair the r/v fistula. I had a surgery similar to the gracilus surgery, the only difference being they used the gluteal thigh flap muscle and not the gracilius muscle. My repair has held strong for 12 years and survived a natural conception, pregnancy and c-section delivery of a baby. I don't often check the forum so if you want more info PM me.

My doctor was Gregg Shore and is currently at the Center for Intestinal Continence at St. Anthony's in St. Petersburg, Florida.

My surgeon is Stephanie Breukink at AZM in Maastricht. The mesh repair is MUCH less invasive and is having MUCH higher success rates so far. My repair did fail, but I only 2 out of the first 10 did -- already a higher success rate. They are continuing to perfect the procedure; for more serious fistulas they suggest a temp ileo while the repair heals... It's worth a shot!

Gin

Thank you!