Fistula symptoms??

Yes, it definitely sounds like a recto-vaginal fistula, I had one myself (the inflammation is healed but the tract will now always remain) so I have to hope it doesn't get inflamed again or I'll be back to the same symptoms you're describing...though I didn't have anything slimy discharging from my vagina as you've described).

With those symptoms it's sad your GI hasn't clued in that it's like a RV fistula....I guess you'll have to tell her to send you for an MRI even though she's the one that should know that *rolling eyes*, you might consider finding a new GI after your (appointment tomorrow) cuz any GI that doesn't clue in to those symptoms isn't worth wasting your time with.

Welcome to the forum,

Yes, gas passing through the vagina and bubbles in the urine are signs of what could be multiple fistulae. They can be hard to find, but be sure to let the GI know about those symptoms. You could get a bladder or kidney infection from one connected to the bladder or ureters.

When my fistula was inflamed I just felt a lot of pressure all the time, when I had to use the toilet it was more painful and scary cuz most stories of RV fistula include passing stool via the vagina, thankfully mine never did but it scared the hell out of me...there was a terrible odor too but no slimy mucous or stool passed through thank goodness...however it's still a very scary thing to go through. I was very constipated too but still had multiple bathroom trips to poop so that added to my fears and my pain.

I'm sure the MRI will produce better pics of where exactly yours is, it did for me at least....once the Humira kicked in and took care of all my inflammation, the fistula was no longer inflamed either but my GI described to me that the tract would stay there forever now that it's been formed and we just have to keep the inflammation away and that keeps the fistula under control, it sucks though cuz it just adds to the feeling of doom when I flare again...I truly hate this disease and what it does...it takes too much from us as it is.

I have seen three different colorectal surgeons in three different states, and between the three there are four options, ALL of them viable.

1) leave the seton in forever. This is actually the easiest option. I know it causes discomfort and embarrassment about intimacy (and I will mention that in a minute), but surgery can be hard on your body.

2) take out the seton, start Remicade or a similar biologic and hope it heals (this applies to if you have Crohn's). The problem with this is that if it closes on one side, then it will create an abscess and burst through again, re-creating the fistula.

3) plug surgery. This is just how it sounds: tissue is taken from another part of the body, stuffed into the fistula, and they hope that it absorbs and heals it into the fistula (if that makes sense). If this doesn't work and it just falls out before attaching and the fistula recurs, you can always put the seton back in (or start biologics and hope it heals evenly and not just on one side). This is the one that I am trying next month.

4) flap surgery. This is where they take a flap of skin from somewhere and actually cover the fistula (either on one or both sides), like a patch over it. This is the most risky and I am really hesitant to do it, personally. If it doesn't work, you can't really put the seton back in because there is still the flap there. It's rare that this heals and works on its own; you usually have to do a temporary ileostomy (and have a bag) for about six weeks, then they can reattach it. But if there is ANY inflammation at all, they aren't allowed to reattach. So if you flare, even the tiniest bit, no reattachment for a while. The tricky part with this is that having the ileostomy itself will cause inflammation because it's not natural, and obviously they can't tell the difference between Crohn's inflammation or just natural inflammation, so they just won't reattach. You run the risk of having a bag for a long time. All three surgeons said the odds are 50/50.

sf charm said...
Is it possible to have perianal skin tags without ever having been diagnosed with Crohn's disease. I went online and saw what they look like. I have one but always thought it was from having episiotomies with the births of my kids.

-----That's a bad sign sorry to say...I got my perianal crohn's skin tags in my teens, they would come and go on their own, docs said they were just hemorrhoid's which never made sense cuz I was never constipated as a teen....then I started showing some signs of CD about a year and a half after I had my first baby in my early 20's, and the skin tags became very large and hard but docs still insisted they were just hemmies so reluctantly I got them banded while they were large and hard (flaring, unaware still of what they actually were) shortly after that banding all hell broke loose internally, full blow crohn's symptoms....so I went back to my doc and she sent me to a GI and as soon as he saw my external perianal crohn's skin tags (he already knew of my bowel issues that I had developed when I spoke with him) he proceeded to do a sigmoidoscopy on me and saw the tags and knew right away what was going on....crohn's disease. Not all CDers get them but they are basically diseased tissue and cannot be cut out/off or they won't heal due to the area and the constant infections that would arise as well as the fact they are diseased tissue.-----



I have never had any Crohn's symptoms that I'm aware of. Last colonoscopy showed severe diverticulosis.

-----I'm wondering if the scope findings were misDX and it's actually CD inflammation? Of course there's the very unlucky chance of having both CD and divertiulosis as they are 2 separate bowel diseases so they could coexist together, there are others that have both.

When they did that scope did they see the anal tags at the time? Like I said, before I got them banded when I was a teen, they came and went all on their own very randomly...after getting them mistakenly banded as if they were hemmies they stayed in a constant flare...large and hard.-----