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I am so embarassed. Is there any medicine to control/stop fistulas? I now have abcesses on my pantyline area right by the vagina, waiting to see if I have a fistula again. I thought that taking the risk of starting imuran a year ago that this would stop the fistulas and abcesses!

It's not just embarassment that I'm pissed off about. I am in pain and can't put clothes on let alone walk very easily. My husband is the best. But I worry about him too.

Anyone out there have these issues? I would appreciate sharing any info or words of understanding.

redrider42

 Reply posted for redrider42.

I was so desperate to find someone who is going through what I am going through.  I have had Crohn's since I was 14 and I'm 29 years old now and I have had a Rectovaginal Fistula for 5 years now and for 5 years I have had gas and stool pass from the vagina. It has been extremely hard and embarrassing to deal with. The gas passes without control and stool passes every time I use the restroom. Having a 'real' relationship with my husband has been very hard. I am getting really frustrated dealing with this. I had attempted surgery from the vagina area and 6 weeks after a hopeful surgery I was feeling the gas and stool pass through again! After one failed surgery my gastroenterologist recommended that I try Remicade. So after the third dose of Remicade I developed a really bad vaginal irritation that just wouldn’t heal, it latest 7 weeks (hell), when I stopped the Remicade the irritation disappeared. So, I think that is my side effect from Remicade which is unbearable. I met with another surgeon who recommended surgery from the anal side since the vaginal surgery was not successful. Today was my surgery date and I went under anesthesia and everything, I woke up thinking I had the surgery. I found out the surgeon could not find the hole, even though hours before I had surgery I had passed a lot of gas and stool through the vagina. So surgery was not done and now they think the Remicade should be done again and because it might have been slowly working. But I don't want to take Remicade again if I have to go through the side effect that I had before. My doctor had also recommended that I could try Humira if Remicade doesn't work. So after hearing your experience with Humira, I am very hopeful. Thank you so much for sharing your story. I really needed to know I wasn't alone. I thought I was!

 Reply posted for redrider42.

Hi redrider42, I too get those pimply growth spurts of vag/rectal fistulas. I have found that Entocort, antibiotic for 7 days, along with desitin, helps me alot. I've also, recently, learned, that if your hormonal level is wa'ay down, you need to get that under control along with your daily meds for the disease and I've noticed my fistulas keeping neutral. Feel free to read my personal story under Womens Issues re Hormones and Crohn's. Take care...  

 Reply posted for Rustygurl87.

rustygurl87

I too am dealing with a recto-vag fistula...stubborn little buggers they are.  I had an overlapping anal sphict-plasty done 13 weeks ago and that is when this fistula appeared on the bottom radar....freaked me out, the passing of gas and stool thru there !!  I went in 2 weeks ago to have Doc close it up, he says the tissue was healthy and found no evidence of active crohns....ho hum...now I am having little bit of stool seepage coming back thru. Not sure why, maybe the stitches are stretched and some is getting thru, mostly when I have frequent diahrea....which is my life....I am holding out that time will heal this puppy, until then I too do all the carrying around of extra pads, tissues, etc  Has anyone else out there ever had one of these just heal....?

 Reply posted for redrider42.

Yes, and they are the most awful thing ever!!!!  Currently i am taking humira which is the only reason i can function.  I have a recto-vag & one on my backside--don't know that name.  They can be so very painful at times but i function well with my meds.  I took remicade for awhile and that worked but then had to move on to humira.  I hope it works for a long long time.  I have had the gas and drainage, and i agree it is very embarassing.  I haven't tried the sitz.  Will get on that right away.  Hope yours gets better asap!!!!

 Reply posted for jeanne407.

I have a rectal vaginal fistula that is inside as well... I also have to wear a pad and sometimes gas and stool come out because i can not hold it in.. I have had this problem for years now and when Im not in a flare it closes up.. I was good for about 3 years and it just recently came back.. I have been on all meds and nothing seems to work.. What type of surgery are you having? Can they just close the fistula? I have brought it up with my doctor but she just seems to think it will close again, but Im less optimistic.

 Reply posted for redrider42.

If only Imuran stopped the Fistulas/abscesses!!! Though it works pretty well for me. I get them once in a while and when I do, look out! It usually comes after frequent diarrhea. :/ I know how you feel when you say it hurts to walk, or sit for that matter lol. It's no joke. Sitting in the bath tub with hot water tends to help me. Also, I have learned to sleep on my stomach, and put a fan near the problem area and put a hot towel on it. I also recommend you get yourself a donut for when you find yourself in this situation. Just be happy your at home and not away at school with roomates lol. It's quite embarrassing sharing a bathroom with someone and having to go frequently. You go through a lot of spray and a lot of toilet paper lol! And waiting is the worst when you have to go. Ahh, the joys of college...also, rubbing some neosporin helps with the burning and some of the pain for me. Hope that helps! Sorry you were feeling bad, hopefully your better now!! Stay hydrated! ~Meghan~

 Reply posted for redrider42.

i have a rectal vaginal fistula that is inside...i pass gas thru my vagina and if there is a loose bowel then it comes out there....sometimes i have to wear a pad in order to go out because since the the vagina has no sphincter muscle i cannot control or hold it. Have been on humira since sept 2008 and nothing has helped....surgery is gonna be this summer....the only way this will go away....have no idea about the exterior fistulas but this is not a fun disease and i hope you have a support system.....i dont and am having some issues.....but it could be worse....
this was half commiseration about the fistula issue and half vent....sorry and thanks for listening....

 Reply posted for redrider42.

I absolutely feel for you.  I have had the same problem off and on for quite some time now (2 or 3 years).  They seem to come and go around my vaginal area and around my bottom.  I always know when I am going into a flare because there is one on my bottom that will pop up every time right before I get sick.  2 years ago they were so bad that I couldnt sit or walk.  I was basically told the same thing as the post before you.  Hot baths, warm cloth or a heating pad to help it to drain.  I always kept it covered when not using a cloth on it because when they drain that is just the most disgusting thing.  I know for me at first I was too embarrassed to say anything to my dr. because I had no idea what they were and had no idea that they were even related to my crohn's.  Could this disease be anymore embarrassing????  I do hope that you feel better soon and hope that the advice helps.  Good luck to you and God bless!

 Reply posted for redrider42.

 I have had 3 known abscess's. a One near my anus, another near that one shortly after while healing, and one inside my vagina (about 2 years later). They were painful to me too. The first abscess had to be drained by a surgical out-patient procedure (the surgery was neccessary and painful). Unfortunetly, they couldn't find the fistula that caused the abcess and I had another one that reached the surface and took care of itself. The vaginal abscess was mortifying, I was prescribed anti-biotics, Entocort, and Lialda and it cleared itself up. I now regularly take Entocort and Lialda and haven't had an abcess in about 2 years. When surgery wasn't necessary, and after surgery, my Dr. always recommended sitz baths. Basically, Fill your bath tub to wherever you will feel most comfortable or whats quicker for you and add epsom salt. That will help drain your abcesses and help heal them faster.  Take sitz baths often, 3-4 times a day. He also told me that moving around will help them drain faster which was hard for me because it hurt so bad. Ask your doctor if that would help.

 Reply posted for redrider42.

I only know about men with fistuals, so i can't comment on your situation, but sitz baths or frequent, hot baths are helpful in treatment (i don't remember the rest of the treatment, but this can help you while you are waiting for answers).  Also, even if your sores aren't fistulas this time, this treatment can help, and won't be detrimental.