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Has anyone experienced grotesque swelling (3-5 times normal size) of some of their lady parts in direct relation to an RV fistula? 

Here's a very brief summary of what has occurred. Multiple pelvic infections sprouted in a period of 7-10 days in mid October 2018. First, pouchitis. Then 2-3 days later, a vaginal discharge like a geyser & swelling of the left major labia (it swelled as large as a testicle - very odd and painful!). And 2-3 days later, 2 anal abscesses joined the party. The surgeon said the location of the RV fistula was very obvious during the pouchoscopy, so he placed a draining seton at that time. An MRI revealed no abscess network, but did identify the fistula & seton. 

The inflammation of the left labia has waxed & waned twice since the seton was placed 4 weeks ago. I have been on max doses of cipro & flagyl since November. I wonder why my pouchitis has practically resolved, yet the inflamed lady parts continue to be problematic.

Any input would be greatly appreciated!

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I suffered a bartholins cyst about 5 years ago, things  i’ve never been the same since. It seems whenever I have symptoms of pouchitis I feel pain in that same area where I had the cyst. It finally healed after a drain was placed.  I also easily get a vaginal  infections with burning and itching. I blame all this on my J pouch. Hope your symptoms are much better now !

I’ve had a pouch/vaginal fistula for many years w/ 1 failed repair at Cleveland Clinic. I’ve consulted many top gastros/ IPPA specialty surgeons and leaving the fistula is the best way to keep my pouch intact. Interestingly the fistula appeared shortly after an episode with a ruptured Bartholin Cyst...I’m accepting this and moving on so I don’t let UC steal any more time than it has from me! #strongisthenewbeautiful 

I have been dealing with Bartholin cysts for 2 years and just recently figured out I have an RV fistula. It was the gas coming out of my vagina that was the tell tale sign. This last event was so upsetting - I had the geyser you speak of plus anal leakage and my entire vaginal/perinium area was inflamed.  My OBGYN gave me a script for Amoxycillin until I get seen by the CRS. That made life so much better. I had tried some Flagyl that I still had and it did nothing for the vaginal issues. NO more geyser, no more vaginal inflammation. The Flagyl works on other areas I guess.  I'm going for an MRI this week or next. I'm not sure if I want to do a seton after everything I've read.

Do you have Crohns or UC? I’ve never heard of seton for RV fistula from jpouch. Where are you from? A Colorectal surgeon as far as I now is the only one who’s qualified to repair these but there’s risks involved in the repair. If you’re interested in that type of repair let me know and I’ll give you probably the world’s top jpouch surgeon to consult with.

I Have an RV Fistula. My colorectal surgeon put a seton in (that goes from my anus into my vagina-yeeha).  The CRS feels that the Bartholin cysts were a symptom of the fistula.  Now I am embarking on taking a biologic (remicade) to get the inflammation down and possibly heal the fistula. I haven't started it yet. Waiting for insurance... I feel like getting the inflammation down is the best thing to do and do it this way. I am off gluten, dairy & sugar.

I’m pretty sure the bartholin cysts were at the root of my RV fistula as well. Do you have Crohns or Ulcerative Colitis? I’ve got a jpouch but had UC. I’ve been offered biologic for fistula but I’m not a huge fan of taking meds essential systemic. I really hope you get some relief. I’m so sorry you’ve had to get a seaton 😢 it’s added insult to injury with this IBD 💜💜💜

I had a doctor prescribe Bactrim for the swelling of the labia. It worked wonders for that problem, which was one of the most painful issues. That was a couple of years ago.  Since then I discovered a pouch to vagina fistula. Before that, I had some bartholin cysts and also abscesses in female regions, I assume from leakage of of fluids from the j-pouch.  It gets itchy and then the abscesses get bigger. Sometimes they drain either puss and or blood. It’s pretty awful, but somehow you get through it and are just grateful to have more time with your loved ones. One day at a time…

Then 1075 I’m so sorry that’s awful 😢 My fistula drains waste from my Jpouch to the vagina all the time. Sometimes it’s more drainage than others but I use flat cotton pads rolled up to absorb the fluid… It’s not swelling any more but it’s always there. I have investigated having it repaired but to be done properly it’s another 3 part Jpouch surgery with a high failure rate over 70%. My Jpouch functions well and I’m able to live my life and stay healthy and fit so I just focus on what I’m able to enjoy in life because of my Jpouch.

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