Saw my huisarts today (family doctor). I waited a week for the appointment because I knew it was going to include a pelvic exam and I wanted to be with the doctor I like the best in the practice (they are all good, I just like her the best). I was hoping beyond hope that she would say I was going into early menopause, but, nope, she confirmed my fears that I have most likely developed a rectovaginal fistula.

So now I'm freaking out, on the verge of tears, and feeling like this is all very, very unfair. Just when I was really getting better from this last surgery and having hope that the chronic pain is gone, this happens!

I have to call my GI and get an appointment ASAP to be checked and make sure. In the meantime, I have a ton of questions; if someone with experience (Shelby?) could give me some advice, I'd really appreciate it!

1) Anything special I should be doing right now? I know to keep things as clean as possible. My output is fairly thin; should I really work on thickening it up?

2) What about intercourse? Although I've had pain in the region and the last time it hurt, I'm hoping that isn't the case all the time. Can I be with my husband, or do I need to avoid that for the time being?

3) Those of you with fistulas, did you have surgeries? Are any of you scheduled for a reversal (to stoma)? According to the Mayo website, very few close on their own, so surgery is "required," and if that doesn't work, the "only relief" is to revert to a stoma. Just wondering what my future might hold.

I was REALLY hoping that #6 would be my last surgery for a very, very, VERY long time...

Thanks,
Gin

I'm so sorry to hear your news. I know how devastating it is.

There are a few options for fistulas. I think the difficult part is choosing what to do. I decided that since I was also diagnosed with Crohn's, I would try medications. They all worked for some time but never resolved my fistula, unfortunately. That isn't the case for all.

I would definitely start thickening-up your stool. This helps me a lot. It really depends how large the opening is as to how much you are going to leak.

I think the preferred method is to go to temp. ostomy before trying a repair in most cases. I have never attempted a surgical repair but that is what my surgeon recommended.

I have never been told that I can't have sex. It is always up to me or how I feel, etc.

Hang in there.

Thank you Shelby for your quick response! I am trying to breathe deeply and not freak out about this. It really is beginning to feel, however, as if I keep getting hit with one thing after another!

I have an appointment with my GI on the 9th, so hopefully I'll get some more answers then.

In the meantime I am attempting to not be grossed out all the time!

Gin

Gin, I hope you get a break soon. I'm sure many people here know how it feels when it seems like life just isn't going your way. I told my mom recently that I didn't care if I was "normal" or not, but it would be nice if things were consistent.

Just a tip--aside from soaking in the tub or using a perineal squirt bottle to clean off, I was told I could use a tampon. Personally, I would be very proactive about changing it often, but was told it was fine.

Thanks; consistent would be good, that's for sure! At least there's no pain as of yet, although I think I have a semi-permanent yeast infection (I wonder why?) and Monistat (etc.) is not over-the-counter here, which is a pain.

Just hanging in,
Gin

I had my fistula repaired surgically last year in July. It wasn't to bad as surgeries go. I just had a weight restriction of 15 pounds for 6 weeks.

I actually figured out with my family doc that it wasn't actually a yeast infection. It was a bacterial vaginal infection, which I took antibiotics for off and on until I had my surgery.

Beth B

Beth, what kind of repair did you have?

Yes, I'd be interested in knowing that as well. Apparently they are much more aggressive about surgical repairs here than in North America, so I am very interested to hear what my GI has to say on the 9th.

I know I'll have a list of questions to ask her, but if any of you have thoughts or advice for the following, I'd appreciate it:

1) How do you deal with the gross-out factor?
2) Is there anything that helps with painful intercourse, or is that just a given?
3) Does anyone else get random pelvic/labial soreness with their fistula?

Sigh. Today has been a down day: teary and emotional and too hard a time not dwelling on it all...

Gin