RV fistula?

Hi Liz,
so, yeah, fistulas are awful. Horrendous. I developed one from the severe inflammation from the cuffitis I have. It presented as an abscess. I wouldn't be too alarmed yet unless you are having other symptoms. Yes, passing air can definitely be one (although I never really had that) but I would be more concerned of any irregular drainage.

A gyn will probably miss this on an exam. Mine certainly did and was overlooked by 2 different gyns several times. It basically took me to get pretty bad and then obsessively google the drainage and realize, holy crap. My surgeon did an EUA right away and that was how it was diagnosed.

I would mention it to your surgeon at one of your follow ups but don't make yourself too crazy yet. Vaginas can act pretty strangely even when nothing is going on

vstRn - Hopefully you can help me. It sounds like you've had a cuffitis/vaginal fistula problem. I thought I was still in a cuffitis flare because I was seeing blood. I spray clean and then dab dry with Charmin ultra soft. I can tell, while inserting canasa, the inflammation is is gone from my rectal cuff and noticed fresh blood. It is coming from my vagina. I have no uterus or ovaries and am post menopausal. The blood is bright red. It is either from a fistula or the skin breaking and bleeding from going and cleaning. The problem with that is I have not been going and cleaning near as much as when I had c-diff and cuffitis a month ago.

Is it possible to have a lower fistula with just blood and no stool? I'm thinking if it is new and just started it isn't big enough for stool to pass through. I looked with a mirror and didn't see the source of the blood. It's not bleeding gobs just a few times a day.

Pluot - sorry for asking this on your post..it sounded like she has a similar problem. This is all stuff they didn't warn or prepare us for!

Liz, I agree with vstRN. Gyns can easily miss a fistula, depending on where it's located - and especially if they don't really know there's anything there to look for. MRIs and EUAs are what you'll be wanting if you continue to have symptoms that worry you, or changes, such as drainage.

TE Marie, if blood is indeed coming from your vagina you do want to get it checked out. I did not have bright red blood w/nothing else mixed in - there was always mucous or ... um, other "stuff" mixed in. But, to be safe, I'd give the doc a call.

TE Marie, I have never had any blood pass through the fistula. It was mainly a lot of pus like drainage (I know, gross) and on occasion a little bit of stool. I would definitely get the blood checked out although it doesn't really sound like a rv fistula. Are you having any other symptoms like air passing, pus, stool, a constant wet feeling??

I actually had a plug done for the fistula and even though the success rate is low, I think it is working.

Thanks for your advice. I found it and it is just bleeding, the source is a little up inside against the pouch side wall then a day or so later it had a tiny scab on it. I could not feel a corresponding spot on the other side in the j-pouch - but that would be pretty hard to find by myself. If put Bacitracin, first aid antibiotic ointment, on everywhere and it felt better for a while. I'm like you guys thinking it isn't a R/V fistula. Maybe it has something to do with being post menopausal and not my j-pouch at all. I didn't expect blood from there but was almost positive my cuffitis was in remission. Things were a lot easier before the warrantee ran out on my body.

Closing the loop on this one... I told my GI my concerns, especially since I haven't had my pouch construction yet, and she ordered a pelvic MRI which came back negative for fistula.

Meanwhile I saw my surgeon today who says "MRIs are okay, but EUA is better!" and that he will perform an EUA before my pouch construction -- if he finds a fistula, they'll wake me up instead of doing the proctectomy/pouch construction/loop ileo. Kind of a scary proposition but I know I will want to think long and hard about doing the j-pouch instead of keeping my ileo if it really is a fistula. In any case, none of the doctors think it is likely, but I feel a whole lot better knowing it's been/will be looked into.

Hey Pluot,
My RV fistula was found during EUA - my gi and surgeon seem to think it developed because of the severe cuffitis I had.

If on the off chance it is a fistula, what would your options be at this point or does your surgeon want to address that only if it is indeed a fistula? I'm guessing a seton to begin with?

Where are you getting your surgery - I see you're also in NY. I get all my care at Cornell. GOOD LUCK TO YOU!

Hey vst! I am at Cornell also Who is your surgeon?

It seems like they are thinking it is so unlikely that they didn't even want to go into what the options would be... I asked my GI if an RV fistula would be a contraindication for a pouch and she said "not necessarily," whatever that means!

You know, if I wake up on May 1 and I don't have a pouch/still have my rectum I'll be bummed, but also really f-ing glad that I brought up my concerns and got as much info as possible before deciding what to do. So basically I feel at peace now. I have no symptoms now that would indicate a fistula (no pain or drainage) so I have no issue with waiting until then.

That is great that you have no symptoms. I also am thinking that a fistula would be unlikely. They are really gross and really uncomfortable and if you do have one, you know it.
My surgeon is Dr. Lee and my gi is Dr. Bosworth - love them both. How about you?

Ha! I bet we've crossed paths at the IBD center. I see Michelassi and Scherl.

Sorry to hear yours was so troublesome How are you doing now? Do you still have the diversion or did they take it down during the mucosectomy?

Oh so funny. I'm sure we have crossed paths - I was practically living there for a while! And I love Dr. Michelassi - I saw him once for a consult and he is charming!

Yeah, I am still diverted while everything heals which is actually a good thing for now (although I looooooathe this loop ileostomy). If everything goes as planned, I should be doing a 2nd takedown in June and will hopefully be done with all this for good. It has not been the best year and a half to say the least... But since the pouch was advanced that then covers the fistula so that shouldn't be an issue. I'm doing really well right now actually - the pouch advancement was the easiest recovery I've had so far since my surgeon was able to do it all transanally (omg, good thing we are knocked out for these things talk about embarassing!)

Hopefully you'll make it onto 14 after your surgery although the majority of rooms are still converted to doubles still from Sandy.

Oh, me too! I used to see Scherl weekly. I was just saying today that this is the first time since I became her patient that I haven't had a future visit on the books with her, touch wood.

Good luck with takedown! It is time for some good luck for you for sure :-)

Hehe, I was in a makeshift double on 14 after Step 1. I can't believe they are still doing that! I felt so bad for my roommate, she had to use one of those old fashioned bells like at a hotel front desk because her side of the room didn't have a real call bell.