I am so sorry to hear that your daughter has these issues.

I have a simple perianal fistula, and my doctor placed a seton, and it made a lot of difference in how I feel and stopped the fevers i was having, though it's a palliative, not curative measure. And no, in allll the years humans have had fistulas, there really isn't any great advancements in their treatment. I will likely have my fistula and seton for months to years, but again, I feel way better with it in than I did without it. I don't even feel it 95% of the time, anymore. I never had stool drainage; it's been just mucus and blood, but mine doesn't involve my pouch at all. A small 2X2 is all I wear, up against it, for comfort.

If your daughter has perianal Crohn's disease, biologics like Remicade sometimes will help a fistula heal. Sometimes antibiotics help, sometimes immunosupressents. Active Crohn's in the perineum makes surgery a bad thing for those patients, because they tend to heal too slowly there. I'd say a seton or two is her best option to start with. It allows the fistula tract to drain without the skin healing over, and the tract can mature and the inflammation around there can lessen. The body no longer sees the fistula as a wound and only recognizes it as its own tissue, which is why our bodies won't "heal" them on their own, and that stinks. Setons were created by Hippocrates; tells you how much advancement has been made.

I feel like I'm going to have this rubber band in my butt FOREVER, and I just might, but I'm "old" now, with a loving husband, and my childbearing years are at their end. I feel for her to have to go through this in her late teen/early adulthood days, when intimacy and body image are so important. Can she find a support group for perianal Crohn's sufferers? I know two boys on my block are going to a Crohn's/colitis camp this summer... Perhaps talking to someone going through it, too, will help, especially if they're in her age group.

Rachel,

Morgan has been on Remicade for the last 4ish years. We stopped it to try Humera for several months until she got her first fistula. She recently had a test come back showing Remicade was ineffective for her. She started up on 6-mp again. She has taken that before but it was when she was 6. She took Cipro until she lost 75% of her hair and was getting cystic acne all over her scalp and face. She can take Flagyl only IV form. The oral makes her throw-up. Does anyone else become resistant to medication like this?

As far as support groups around our area...There was one started a while back but the girl who was in charge of it moved away to college. Any other one would be out of her age group. She went to that camp for 2 years. She is too old now but she could be a counselor. The bummer part about being a councilor now is whoever is in charge now has them counseling at a camp that is not related to their disease. When she went they all had that in common. Maybe they will change it. She made a few friends when she went to camp though. They stay in touch on FB and she said she is the only one with fistulas.

Sorry to hear all of that. Yeah, I guess you can become resistant like that. Flagyl oral makes me sick, too... I list it as an allergy, but it's more a strong intolerance. There are other biologics, too... Might they try another for her, to see?

Best I can say is that she might find some relief, then, with the setons, since medical management is failing her. It won't heal things, but it can calm things down. It did for me, anyway, so I'm glad they exist at least for that reason.

Toobusy, so sorry your daughter is still having problems. I have a pouch-vaginal fistula - like your daughter's (I think?), my fistula comes out just outside the vaginal opening. The fistula finally was dx'd 2-1/2 yrs ago, and I have had a seton in for a year. I was on antibiotics for approximately 2 years, I don't know if they helped or not. I quit abx's about 2 months ago and am doing just as well, if not better, while off of them.

As in Rachel's case, the seton has absolutely improved things - prior to seton placement, and for the first 8-10 months after seton placement, I had drainage - mostly pus, and some blood. FINALLY, a yr. later, things seem to have calmed down, knock on wood. My surgeon (Cleve. Clinic) said she would not even consider a repair unless a seton was first placed: things do need to settle first, the area around the interior opening needs to heal as much as possible before any kind of repair will "hold". I have not made a decision on my next step ...

I too am "older", am married, and thus am not in the same situation as your daughter. I was told by my surgeon and by Dr. Shen that I/c would not damage the fistula - however, at least in my case, there is discomfort so we find other avenues. I am sorry she has to be in this difficult situation at her age.

On a hopeful note, Ginlyn has had mesh from pig muscle used as a repair, and as far as I know, it has held. She is out of the country, but please look her posts up for further information.