Fistulas for women...the faint of heart beware!

Does anyone have any experience with fistulas?  I've recently had a fistula that ended up coming through to my girly parts.  So my bowel contents started coming out of the wrong exit.  Has anyone had this type of fistula?  I had surgery but I still have a ceton keeping the fistula open for now.  But it's horrible because now I'm constantly leaking.  I have to wear big cumbersome pads to obsorb all the fluid.  The dr. says this is normal until he goes in and puts a plug in the fistula.  Anyone have any brilliant ideas about how to make the situation more tolerable?  Even fistula success stories will make me feel better!

Sorry for such a yucky topic, but 'tis my life!

Cheers

I had fistula's but not in the same area and Remicade cleared mine up.

I have a fistula -- perianal, not rectovaginal, but it drains right at the vaginal opening, so I can empathise.  I had the seton removed for a clinical trial I was in, but it still drains (which is preferable to it closing and needing to be cut again).  It's no fun and I have no real suggestions.  I wear cotton right next to it so that it doesn't make more a mess than necessary.  Sometimes it drains more than other times.  I wish you the best!  It's not fun, but you're not alone!

Thanks fuzzy. They're planning on pulling my seton and putting in a plug after my 3rd remicade infusion. I'm just crossing my fingers that it doesn't re-infect. And yes, I'm totally laying off the Chinese!

Cheers

My daughter had surgery in Nov for rectal fistulas. She notified me that they have come back. The Dr. called in an antibiotic and they will address it tomorrow when she's under for her endo & colonoscopy. I guess I wasn't aware that they keep coming back or do they never really go away. BTW, she LOVES chinese!

haha fuzzy. you've caught me. I'm you in disguise!

thanks for the laugh back!

cheers

The new drug similar to Humira might be Tysabri, it's not really new but it's newly approved for Chron's; newly approved as approved a few weeks ago!  It can cause sudden brain infections or whatever and severely disable or kill you though, so it's only available through a specially monitored clinical program.  It's also supposedly like $2800 for each month's infusion so if your insurance doesn't cover it I don't know anyone who could afford that on their own.

Another drug is Leukine, also not new but newly in testing for treating Crohn's, it's only in stage 2 clinical trials right now so it'll probably be a while before that one is used for Crohn's.

There is another drug in stage 3 clinical trials called Certoilzumab Pegol, I believe you have to complete stage 4 clinical trials before a medicine can be approved, but am not sure.  The drug supposedly works well and is tolerated well but there is no data comparing it to the other similar drugs like Humira yet, so who knows if it'll be a "better" drug or just another similar one so there are more choices.  Either way it sounds pretty promising so I hope we have another medication available to try eventually.

I have had a r-v fistula that has been on and off active for 5 years. At its worst, I had full blown stool coming out of it which was so upsetting and very, very uncomfortable--especially itchy. More often, it's gas or mucus/blood/liquid. Of course, it's the most active when my Crohn's is the worst. The craziest is that when I try to stifle passing gas, it comes out the front even louder! Sitz baths with salt were very helpful. My gyn also suggested a hand held shower attachment to spray around the area. The key being to keep the area very clean. If in a restroom away from home, I'd twist up a tissue or some toilet paper and move it up there pulling out stool or whatever until the area was clean. My r-v is right at the opening of the vagina. At it's worst, I also added pau d'arco (an herb) to my sitz bath. When the disease in under control, I have very few r-v symptoms. My gyn said absolutely no tampons during my periods as this would keep stool/bacteria in the vaginal tract. Luckily I haven't had too many issues during swimming season. I do where a lightdays everyday--but it makes me feel even fresher even on days I have no r-v activity.

I felt very sorry for myself (and sometimes still do) until I read about Oprah's Fistula Foundation for women in Ethiopia. Very sad stuff.

Best of luck to you!! Hope the r-v settles down.

thanks map lady that was very helpful! lavender, even tho the remicade wasnt as helpful for me the second time around. they said it was still giving some help to controlling my crohns, mayb that will b the case for you!

Thanks everyone. I feel better and worse at the same time! I've only had my fistula for about 4 months, but it sounds like this could go one for years!

sammies, i have many of the same problems as you described, including the gas issues!

has anyone had a plug put in? did this help? reinfect? make any difference at all??

I know I am way late to reply, but I had a RV Fistula (3 years last December).  No medications cleared it up (Flagyl, Cipro, Remicade, etc.).  I have not had a flare since starting Remicade in July 2006, and because the fistula was not causing serious issues, we left it alone.  The drainage caused a severe pelvic infection at the end of last year, so we did the plug.  It came out 2 days after the surgery.  The tract for mine is very short and so the likelihood of it working was apparently not very good.  However, my surgeon has pioneered a new version of the flap, taking tissue from outside into the rectum while keeping it connected to blood supply.  Even though my Crohns was not active, the disease had injured the tissue inside, which is why the flap has had a lower success rate in the past.  I am proud to say that finally (4 weeks later) my fistula has closed.  I had resigned myself to living with it and I just hope his new technique will help others feel better about themselves like I do.  Only downside, I got a stupid Crohn's flare after the surgery so it took a little longer to heal, but even that is getting back under control thanks to my Remicade.

I hope you find something that works for you!