Rectovaginal Fistula

So I just had a rectovaginal fistula pop up. I’ve been having pelvic discomfort and kind of a weird feeling of pressure for a couple months. Got checked for a UTI, and it came back negative. So then I figured it was just female crap giving me trouble again and have lived with it. I had constipation recently, and shortly after that I had gas occasionally come out of my vagina. A couple nights ago, some pinkish fluid also discharged. So I did a little experiment. I put a CBD suppository in my rectum, and a little while later, gas and CBD oil came out of my vagina. My GI can’t see me for a month. Anything I should do in the meantime? My mom wants me to go to the ER, but I’m pretty sure they would just say “make an appointment with your GI.” And so much for my GIs theory that my Crohn’s is “perfect”. I’ve been telling her for a year that my major weight loss was due to a gastroparesis/Crohn’s combo, but she thinks I have an eating disorder *insert eye roll here*.

Side note, this isn’t my first fistula, but it’s been 10 years since I’ve dealt with them. I actually only found out about them when I got a copy of my records. The doctor had noted them, just never told me about them! I was naive about Crohn’s at the time, and just thought they were hemorrhoid related or something. The only real trouble I had was with a new one that started out as an abscess, and then opened up on its own. The abscess was painful, but again, my GI didn’t do anything. Once it was open, it was usually just mildly bothersome. My old fistulas closed on their own when I went into remission (no meds besides Pentasa, just followed a good Crohn’s diet). I always see people talking about setons and surgeries and wondered how come my doc was completely unconcerned? Nothing bad ever came from the lack of treatment at least.

Hi Susie, thank you for your reply!

I’ve done Remicade (severe allergic reaction brought that to an end) and Humira (didn’t help). 6mp and Imuran both made me feel like garbage 24/7. I only have Medicaid for insurance, so my medication. options are limited. Same with the GI, the good ones don’t take Medicaid. I had a scope just over a year ago which showed no inflammation. My last several scopes were good. But then my gastroparesis hit hard, and I had to change my Crohn’s friendly diet to Crohn’s unfriendly nutritional drinks (so much sugar and dairy). I am seriously underweight, and since my GI (actually her assistant, I only get to see the real GI for scopes) thinks it’s a mental issue, she wanted to have me hospitalized with a feeding tube last summer. If I can’t absorb the calories I’m consuming now, I don’t see how a feeding tube is going to help, so I declined her insistence on weekly weigh-ins (give me a freakin’ break!) and haven’t been back. But now I have to go because of the fistula. I’m sure she’ll give me a ration of crap for not doing her weigh ins, but I’m going to bring my mom with me, so maybe she’ll lecture me less with an audience.

I’d do TPN, but I would need both a doctor to order it, and my insurance to cover it, both of which are iffy.

I read several threads here that had people with vaginal fistulas, and it sounds as if plenty of them dealt with them for years without repercussions. Makes me feel a little better, because when I posted this question at another forum, the responses were all “Go to the ER immediately!” I have serious hospital phobia and don’t think I could cope with it.

Keep an eye out for a fever - the trickiest thing about RV fistulas is if they heal to close on just one side, but not the other. Then stuff gets stuck in that little tunnel with nowhere to drain, and it abscesses, bursts, and repeat.

I've had one for 9 years now. We stuck a draining seton in for a few years, and the skin healed around it like a pierced ear. Now I don't have anything in it at all, and I don't have issues with it. Even with Remicade it never healed, but it also doesn't close since the skin around it is just fine. Gas will go through (you get used to it), and if I'm having super runny D (like from a colonoscopy prep), then I wear a pad to catch it as I run to the restroom.

Everyone's is different, though. I strongly recommend getting a colo-rectal surgeon to help manage it.

RVF sufferer here. I had recto-vaginal fistulas prior to and only developed an RVF after a successful (finally!) surgery to heal a larger fistula.

RVFs are notoriously hard to deal with, although I feel fortunate as I am currently diverted (ileostomy) so I only have to deal with occasional discharge. I participated in the study linked by exit 4 above but, sadly, I haven't had healing. There are new trials with stem cells in the works and I am planning to go that route vs. a traditional surgery (Martius flap or other).

I echo the recommendation to find a trusted CRS who really knows fistulas. If you go the surgical route, they likely will partner with a urogynecological surgeon but focus on ensuring the rest of your disease is as stable as can be (as surgery is really only an option when inflammation is under control). Like you, I developed a reaction to Remicade, and then went the Cimzia and Humira routes. I'm now on Stelara (among other things) and, while the RVF hasn't healed, it hasn't worsened and I haven't developed anything new.

Wishing you the best!

If you can't get into your GI very quickly, try getting into your OB.

I actually found my GIs pretty useless about my fistula. They just would tell me to see an OB, and the OB would send me back to the GI. But if your OB is more helpful, he/she may get you a good CR surgeon.

I have my first HBOT session scheduled for Friday. Here’s hoping it closes this sucker off! My mom is wonderful for paying for this for me.