I had/have a fistula that made its way from my ileum to the skin about three inches above my tail bone. My GI always brushed off my complaints of pain in my back and when it started to get close to the skin it turned into a painful red lump that would swell up and get really painful and then almost disappear. I finally got a really high fever and started to feel like my vision was swimming. My friend finally convinced me to go the Emergency room. (mind you, i still had not connected it to my Crohn's. I used to get random abcesses on my legs when i was a kid and just thought that's what it was.) The cut it open and drained it at the ER. It stayed open, on and off, for about two years. I had to keep it covered, usually with maxi pads and tape cut into a square because it would drain sporadically. But it finally healed with 6-mp and pretty strict adherence to the SCD diet. That was five years ago and its a pretty nasty scar on my back, but it never opened again. its nice to write this down. I just joined this forum and I've basically never talked to anyone about this except my husband - who was the only person who ever saw it. Sorry to hear that anyone else has ever had to endure this, but glad to hear i'm not totally alone. Just wanted to say, if you ever think you have an access, get it checked out and get on antibiotics. I spent years suffering from pain and fever and i had no idea what i was dealing with. in hindsight, its super scary to think what could have happened (sepsis, etc.) but also, bodies can heal. Its slow, and frustrating and there were many times i thought i would have to live with that draining wound on my back for the rest of my life, but it got better.
