Hi all,

I'm really very freaked out and worried. I only just had takedown surgery last week, so everything is very new. I'm having very loose watery stools, fairly often, but it isn't nearly as bad as the UC was, so I've been dealing pretty well with that. Minimal butt burn. I take lomotil and sometimes tramadol for pain...

However, my butt is often sore. Not burning sore. Sore like there's pressure there, especially when I stand up for long periods of time. And I've recently noticed that I seem to sometimes pass gas from the front, rather than back. I was on my period at the time of the surgery, so I was bleeding the first few days after anyway...but now, after my period should be over, it seems like there's a brown discharge and sometimes a white/mucus-y discharge as well, on my pads, closer to the top than towards the back, where my leaks (I occasionally leak a bit when squatting, etc.) come out. It doesn't really smell like stool? And I've had air from the vagina pre-surgery, just when exercising or sitting in certain positions, but this feels different. 

So, I'm really hoping that it is my period being wonky because of surgery. Or maybe a normal thing this soon after surgery? I had UC for six years, no signs of Crohns, I'm young (24), no kids yet, and my doctor hand-sewed my pouch, which I thought was supposed to make fistulas less likely???? I'm just destroyed by the idea. I can't go back to an ostomy. It was hell for me. Does this mean the Jpouch is failing? Should I have surgery? Can I take antibiotics if it is a fistula?? Is it too soon to tell if its adjustment issues or a fistula? What is the protocool? what about sex, eventual pregnancy? Should I just give up on all that too?

I know nothing about fistulas, so I'm just really confused by the whole thing. I have an appointment with my doctor on the 15th, but I really need some advice. Does it sound like a fistula? And what should I expect from here on if it is one? Is this common right after surgery?

Original Post

Liz, I’m sorry you’re going through this. It’s best to focus on figuring out what’s actually going on before getting distracted by potential treatments and effects on your life. Why not call the surgeon’s office and try to have a phone call or get in to see him sooner?

Thanks for the reply, Scott F.

I've never had a fistula before, but it seems pretty obvious that it isn't right or normal to have a strange substance coming out of my vagina uncontrollably. I want to be prepared if that is what is going on, and I'm generally curious if others here think it sounds like a fistula (or something else) and if there's anything I can do to treat it myself and avoid further life complications. I had these surgeries to have a better life, and I was kind of resigned to the possibility of future problems and complications, but I didn't expect the surgery itself to cause such an awful side effect right away that (from my very basic understanding) is basically untreatable. I'm also a young woman, and it was hard enough going through all this...don't know how I'm supposed to lead a fulfilling life with possible stool coming out of my vagina. It is impossible for me not to worry about it.

My surgeon won't be reachable by phone until Monday, I imagine. He did email me once, should I try to email him? Leave it until Monday? I had to go right back to work and school after surgery, so it is hard to ask off to meet with him too...the hospital is 3 hours from where I live so it is an all-day endeavor whenever I go for an appointment. I can and will talk to him about it ASAP if you think that will help.

But I was under the impression fistulas are practically untreatable. 

Hi Liz. First off, breath. Where do you get the idea that you have a fistula? The barium x-ray that you had before your takedown surgery should have detected one if it was there. This could and possible is,  just a vaginal infection of some sort. The watery stool and many of them are both common with early days of j pouch life. I agree with Scott that maybe call the surgeon's office or email, whichever you feel more comfortable with and see if they can move your appointment up a bit, or if they have any advise the could help you in the mean time. Please do not stress, things are a bit wonky for a time with a new j pouch, but this could be nothing to do with your pouch. Good luck and please keep us informed on what you find out.

Aimee

It may well just be normal post surgical stuff but I would get into see the surgeon as soon as you can. I had an undetected leak shortly after my takedown which I let go. I suspected a fistula but it wasn't actually diagnosed till a year later. I wonder if I had been on antibiotics early on if I could have avoided it. But I really don't know. I also don't know if a fistula would show up on a barium enema. I've had three MRIs that don't show the thing and I have stool in my vagina.

I certainly don't want to put you into panic mode cause that sure doesn't help. but I really do acknowledge your concern. You have every right to ask for prompt investigation. 

Thanks for all the advice guys! It does help me calm down to consider the barium x-ray. I had mine three days before takedown surgery, and they said it looked good. Though I imagine it is very possible they missed something.

Would I feel sick if there was leak/fistula?

I feel fine, besides the exhaustion from going all the time. One major problem I'm having is gas pain. It feels like UC urgency almost, but it is usually gas, not stool. However (of course) I can almost never pass gas without leaking stool too, and when I try to pass it on the toliet, the gas itself rarely comes out. Is there some way to alleviate the gas? It seems better when I keep to liquids only, so I thought about trying that for a few days...I drink a liquid probiotic yogurt--Kefir, and I can try to just keep to soups if it helps with the pain and leaking. I bought some psyllium husk powder to try to thicken things up too, but haven't gotten it in the mail yet...

I'm going to email my surgeon and call tomorrow about moving my appointment up. I'm hoping it is something else, but the gas and the leakiness is very unusual and I can't think of anything else that would cause it. Is it typical for fistulas to leak something that is mucus-like, yellow liquid, rather than straight stool? Would a course of antibiotics treat a fistula this early on? I'd much rather take medication for a while than have to have a seton or go back to the temp ostomy. Does a fistula mean the Jpouch will fail or is failing? I don't have any signs or symptoms of Crohn's disease, so I assume (if there is a fistula) that it was caused by the surgeries themselves.

JHendrix, when did you begin to notice symptoms post takedown? Is it common to develop a fistula this soon after surgery? What kinds of treatments did they offer you once you were diagnosed with a fistula, and did they work?

Aimc, How did they treat your fistula when they found it on the x-ray? Did those treatments work? 

Thanks again! I'll try to keep everyone updated on this thread as I get things figured out.

Liz, my fistula was an anal fistula. My surgeon took the wait and see if it heals on its own stance for a bit. It didn't heal of course. We then decided on putting a stitch in it.( Beyond the way that sounds I've no idea how that's done) That was done about 19 months ago, had my take down a month after that, and haven't had it come back. I really cannot even remember having any symptoms with mine. I just know that when they did the barium x-ray, they found it. Now for gas, try laying on your side with your one knee bent, or on all fours. Don't force it, just let it happen. I take alot of Beano. Unfortunately ,it only works  for what it works for. Gas for us, especially  with  new pouch can be horrendous. It does get better, just be kind with yourself. Hope  this helped you a little bit anyway. 

Aimee 

Things can sure be complicated and confusing! I find it so at least.  I think the gas and urgency are completely normal for your stage of recovery and will improve.

With the leak, I did feel unwell but assumed it was normal post surgery. I did go back into the hospital for iv antibiotics.  I really don't know if things would have been helped by earlier treatment.

Re fistula (pouch to vagina) it started with air in the vagina within the 1st month maybe. It's hard to remember. It changed to a thin mucous followed by thin yellow liquid. It is  mainly that liquid now but can sometimes be bits of frank stool, lettuce shreds, etc. Crazy. It leaves the vaginal tissue very raw. 

Am I correct in assuming the yellow mucous is in your vagina?

Re treatment, it's been a process over 4 years but have not had success:  2 flap advancement surgeries, an attempt with Remecade and then Humira. This summer I went to the Cleveland Clinic for a consult for a new type of treatment but was not appropriate for me. I'm mostly able to live with it. I try to keep the stool on the thicker side.  Today's probably not a good day to comment though as it's not been a good one fistula wise.

I wish you the very best through this. I'll be thinking of you. 

Thanks for your comments, Aimc. This gas is nasty stuff with the jpouch.

Jhendrix, I'm sorry to hear your fistula problems haven't been resolved. I wish this whole thing was easier on all of us.

The mucus is coming from my vagina, yes. I guess the question is whether it is a "normal" vaginal liquid related to surgical trauma...or if it is the start of a fistula.

Girlunky--Thanks for commenting! Your story does make me feel better. Maybe this is a "normal" ish response to the surgery and not something worse. 

I've moved up my appointment with my surgeon, and here's hoping it isn't a fistula! I'll keep you all updated.

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