Complex Anal Fistula with Crohn’s Disease - Stem Cell Therapy Trials?

Hello,

Skip to the bottom for the question itself.

I’ve been diagnosed and treated for Crohn’s disease for a few years now, it’s largely under control because of Remicade and I’m fortunate to have a more mild case at this time. However because of insurance dragging their feet, I developed an anal fistula with multiple tracts before starting these meds.

The fistula required surgery and a cutting seton was put in. I’ve been told it will never heal and I’ll have it for the rest of my life, a claim substantiated by two colorectal surgeons and a gastroenterologist. I can get by for the most part, I’m used to the seton as it’s been 4 years now. I eat healthy, exercise regularly, and I’m 28.

The issue is that it’s ruining my life. It smells terrible, it hurts and it’s uncomfortable. I bleed(I know it’s not just blood but you get it) a lot, and it’s causing a lot of issues with intimacy and confidence. It and the Crohn’s give me terrible fatigue and I can’t be very active anymore otherwise it swells up, occasionally bursting like a zit. I thought I was at peace with it but I’m not, I’m was just numb to it, but I’m not anymore and it’s causing me so much distress.

Anyway, when I was at the Mayo last, the colorectal surgeon mentioned that the Mayo has been doing trials for stem cell therapy that’s had promising results in the treatment of fistulas for people with Crohn’s, and that I might be a good candidate. The issue is I’m having trouble finding who to talk to or where to sign up to be considered for the trial. Has anybody here taken part in this procedure, or know where I should go to express interest?

Thank you so much!