This is my first day (and post) on the Forum...so glad to have found you all. I had j-pouch surgery in 1991 and have been more or less fine since then. My one issue is I developed an anal fistula a few months after my initial surgery (at Mt. Sinai in NYC) and subsequently my surgeon (Dr. Joel Bauer) tried TWICE to correct it...but the fistula surgery never worked. He wanted to try a third time but I was advised at Mayo Clinic (went for second opinion) not to tempt fate and just live with fistula, as I have been doing.
My question: I am now 54, athletic and in good health, and am experiencing more and more leakage. First it was just dampness after a long walk, now it's the occasional more serious leakage and the inability to take longer walks without yearning to wipe clean every 30-60 mins lest I get a bad rash. And I leak at night probably about 50% of the time now. Is there anything I can do? I do take lomotil/immodium occasionally but that's not a great solution. Should I be following up with a doctor? I was given no follow up instructions after surgery 25 years ago...it's was pretty much "you're on your own now". I'm curious 1) if there are any new meds for people with j-pouches to help them work better, or 2) have there been any major advances in closing anal fistulas for people in my situation. Any advice is much appreciated! Thanks.