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I'm a little over 5 years out from initial surgery and take down. About three months ago, i started passing gas and leaking stool through my vagina. I had a pouch test and an MRI and both aren't showing anything. Anyone else's dr's have trouble finding a fistula? is there something else that it could be?
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I'm fairly certain I have a fistula, but doc couldn't find anything during a EUA last year. Haven't had an MRI. I'm due for a regular scope in the next few months, and I'll see if that shows up anything different from last year.

I read up on treatments and it doesn't make for great reading. Frowner

My symptoms are sporadic and light, so I can live with it. Hopefully it doesn't get any worse *touch wood*.
I'm sorry to say, but this definitely sounds like a fistula. Have you had a contrast? Occasionally these can be a little elusive on imaging. I have heard of another type of test, where essentially they put in a tampon in as usual, then give an enema with some blue dye. Obviously if the tampon is removed with traces of blue dye, then a fistula is almost certainly present.
Thanks for the responses! my symptoms are pretty regular. I wear a pad almost every day. They haven't said it could be anything else. Spooky, I've heard of that as well! I think that is the next test they are going to do after I get my small bowel exam. And I did have a contrast in MRI.

agreed Lixxie! I've stopped reading until I know more! thanks for the responses!
Jenny,
I've had a rather small RV fistula for about 8 years now which occurred 10 years after my original surgery. It hasn't grown or worsen in any way after all these years. Never had surgery to fix it because my pouch is otherwise PERFECT. And I didn't want to mess with that. I too wear a panty liner every day.

You can PM me if you have any questions about the nitty gritty details.

C-jay
Sudie-
Straining does not cause fistulae. In folks with IBD it's often an indication of Crohn's disease. The following is from nlm.nih.gov:

quote:
Most gastrointestinal fistulas occur after surgery. Other causes include:

*Gastrointestinal obstruction
*Inflammatory processes, such as infection or inflammatory bowel disease (most often Crohn's disease)
*Radiation to the abdomen (most often given as part of cancer treatment)
*Trauma, especially penetrating wounds such as those due to a stabbing or gunshot
I've had an RV fistula for 3 years now. Had a draining seton put in over a year ago. It's been draining - what I believe is pus - up until about a month ago. Don't even have to wear a pad now, yay.

Sometimes an exam under anesthesia (EUA), which is a souped-up scope - can help your dr. locate the fistula.

It takes time for the "skin" inside the tract to heal, which is complicated if stool is running through it. The draining seton helps keep the fistula open and draining, and therefore helps avoid abscesses.
I only have one suggestion - if a seton is placed, ask that s/he put 2 "strings" through the fistula for redundancy purposes.

I thought seton string redundancy was overkill, but one of my "strings" broke just before Christmas. So ... no emergency with the backup there.

Hope it goes well for you, keep us posted.
Do look into alternatives -- I've posted about this here before. Different techniques are used here in Europe than in the US, the most common being a mesh repair in combo with a temp ileo. The success rates are running at 80%, possibly as high as 90%, which is MUCH higher than other "standard" methods of repair. They are now experimenting with the addition of extra plasma to promote quicker healing at the mesh insertion site; great success with other types of fistulas, and are just starting to try it with R/V fistulas.

I will be honest and say that my fistula hasn't responded to these treatments, which is stinky for me BUT I am in the clear minority, so I think it is still a treatment worth looking into.

Funny, they rarely do Setons over here, at least not in the NL. They don't consider them a standard treatment option at all.

Good luck,
Gin
Had my EUA and they couldn't find anything. Went in yesterday with a Gyno to have hysteroscopy because they thought it might be up higher. Well it wasnt and they found the recto-vaginial fistula and placed the draining seton. I will have it for 8 weeks and then possible surgery. any tips on how to keep the seton clean and the area around it clean?
Hi I had a perianal abscess and a ishto rectal abscess..both were surgically drained. The perianal kept cycling so my doctor put in a seton for draining in June.. MRI shiwed no fistula just a non healing abscess.. Seton is uncomfortable sometimes mostly around that time of the month.. I am better with it in but it still swells up with a bit of pain every so often.. It's frustrating but I am fine with it.. Cleaning it is easy keep wipes with you when you are not home.. We will get our washroom redone in spring with a bidet.. But fir now I'm in the tub up to 4 times a day just wanting to keep area clean.. Hope this helps? I have to say at the moment it is swollen and sore more so than before.. I went for check up on Thursday wondering if it was irritated by internal checkup? Of course we are going away Thursday so the worry begins!!
Hi. I've posted in other posts about my story. Long story short, I'm going in this Thursday for a EUA And possibly mushroom drain. 2 weeks ago my surgeon found a fistula, fairly large and pocket big infection. He cut it open and put packing. Well about a week later I was right back experiencing all the same symptoms prior...The major one being pain.

My question is if anyone has experienced the mushroom drain and what do I expect and it's success rate because I'm tired of being in pain. .. I've been In pain since my takedown a year ago.
I had been experiencing severe pain off and on for the past year after my takedown. I've been in and out of the hospital in my hometown, had ct scans, x rays, barium tests and scopes by my GI Dr. All they found was severe inflammation and a pin size hole at my anastomosis, which they assured me it would heal on its own. I experience severe dehydration episodes about every 3 months.

I was finally referred to see a colon and rectal surgeon in SA. He did a sigmoid-oscopy and right off found a 1/4 inch track at my anastomosis that lead to a pocket, the size of half his fist, of infection. He cut it open and drained it, packed it and now I'm back 2 weeks later in severe pain in my bottom again and this is his next option...this mushroom drain, which will be sewn to my skin inside and a drain attached and brought out and taped to my outer skin. He wants to keep it in for at least a week.

The pain I have is debilitating and I just want relief. I have a 3 year old and a 6 year old who needs their mommy to be up and running around with them.
Jenny, I can only offer the advice I give anyone with a fistula - get yourself a bidet! You can find easy-to-attach, simple bidets on Amazon for less than $50. I also carry a small squirt bottle of water in my purse for when I'm not home. It also helps to keep some sort of barrier cream over the area to keep any discharge off the skin.

Sorry you're going through this. Fistulas suck. Have they mentioned what kind of surgery they are considering?
loved by 2... that sounds awful! i'm so sorry you're going through all of that! I don't know anything about mushroom drains Frowner but I hope you get some relief quickly!

N/A...thanks for the advice! I will look in to getting a bide. I think he wants to do a flap repair with a possible temp -illeostomy to keep things away from the area to let it heal.

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