Posted 8/2/2015 8:11 PM (GMT -7)
Hi, everyone, my name is Sam. I'm 36 years old and live in beautiful Bethlehem PA with my sister, her boyfriend, and my cat, Gizmo. I had a total colectomy when I was 12 years old after being diagnosed with ulcerative colitis. Being that I was bad about taking medication, I couldn't say if it could have been managed that way or not. I'd have to guess not since the whole thing was absolutely saturated with ulcers. Also, the decision to have it removed wasn't exactly mine. Show of hands if you think kids should be better-informed about their medical conditions, especially if the solution will affect their lives dramatically. -throws both hands into the air-
I had that ileostomy for about a year and a half before having it reversed. I endured a few years of hell until I was 19 and discovered two very large and imposing perianal abscesses right between my buttcheeks. Talk about uncomfortable! They were misdiagnosed as common cysts at first, but when the meds they gave me did nothing and someone with a brain finally decided to take my blood on the return visit, they saw my WBC was through the roof and rushed me to the ER. I was, quite literally, hours from death. I'll never forget what my doctor said as she bent over me at a run to match pace with the gurney: 'You either get a bag again or you die'. Good thing spoken consent is a thing!
It was a temporary loop ostomy that was only supposed to last a year at most, but when the cleared-out abscesses refused to heal past a certain point, I had to move to St. Louis to receive more advanced treatment. This extended my time with the bag as it took about a year for them to fully heal. Then my insurance ran out. After awhile, I decided to keep the bag as I felt it was the only thing between me and another bout of abscesses. I maintained this belief for fifteen years, then I foolishly got it into my head to have it reversed. Why? Vanity. Never do anything for vanity. You might feel out of place, maybe even a little freakish, but never change your life that dramatically over vanity. It's never worth it.
I had it dropped in May. Worst three months of my life followed, coupled with -- you guessed it -- a return of my abscesses. Not as bad as before, but bad enough to require two separate minor surgeries to install four seton tubes to assist in drainage. I made the decision to return to the bag pretty early on; finally, a few weeks ago, it happened. It's on the left whereas my original was on my right, but it's with me again and I can finally breathe easy. I've lost a lot of weight in the meanwhile, but it'll come back. I eat enough for three people on a good day.
I don't suppose there are any ostomates in PA?