J
Jason M V
Guest
Okay, here’s my freaking story. In the early spring of 1996, I was virtually invincible, it seemed. I had a full head of thick, dark-brown hair, perfect skin, and I was about 190 pounds. Then I started getting severe heartburn (and I mean severe), but thought it was just stress. Then one day I tried to walk up the hill to campus and had to run back to my apartment. I went to my doctor and he ran some stool tests which came up negative; so he sent me to my gastro doc, and that’s when the fun began. I won’t describe all the tests, because you probably know them well enough, but I will say that two months later I finally had a diagnosis but weighed 148 pounds (instead of 190) and was going to the bathroom more than twenty times a day. The diagnosis took so long because I had tested positive (though weakly) for a certain bacteria, and they had to rule that out first by having me take Flagyl for a while.
Anyway, after the diagnosis, my doc put me on Prednisone. I had three ulcers in my stomach and hundreds of ulcerations throughout my small and large intestines. My liver was congested; my spleen was enlarged; and my esophagus was so inflamed that it hurt to swallow and every now and then I threw up blood. I thought the Prednisone would fix everything, and that I might even get some muscles back because of it, but about a month after I started using it I had a severe skin reaction to it that became badly infected and could not be stopped. I was put on Accutane by a dermatologist, and this finally got everything under control, but not quick enough to keep my face from being scarred. So now I was not only a freak on the inside, but also a freak on the outside. After this, I took a year off from college, then I came back, and in my last year I found that my hemoglobin was 8.9, which explained why I had trouble making it up the four flights of stairs to my art classes. That’s when iron infusions started, and later came Procrit shots, and everything got worse (my control especially) as the years passed, so that I couldn’t stand very long –or walk very far- before having to go. I had one surgery to biopsy some swollen lymph nodes and rule out Lymphoma. The docs have wanted to remove my entire rectum, my ileum, and the last half of my descending colon for years now, because, due to thickening and narrowing, I can no longer pass stool without the aid of Miralax. But the Miralax keeps everything going so consistently that I can’t go anywhere without taking a handful of Lomotil to slow things down. Oh, I’ve also been fighting a perianal fistula that got big enough to pass gas through. Yowzers!!! Anyway, there’s a lot more than that (I filled the toilet with blood for like two years; I didn’t sleep for more than an hour at a time during the year 2004; I went to the Mayo clinic, tried Imuran for nine months and puked every day; I also had two bouts of acute Pancreatitis, and I've been on Remicade for the last six and a half years...) but I’m tired of writing about it all right now. If you’ve got any questions, I’ll try to answer them. If not, then just try and be well, whether you are or not.
Crohn’s will not always get us in the end!
That was a joke, by the way, that "in the end" part.... Ah, forget it!!!
Jason
Anyway, after the diagnosis, my doc put me on Prednisone. I had three ulcers in my stomach and hundreds of ulcerations throughout my small and large intestines. My liver was congested; my spleen was enlarged; and my esophagus was so inflamed that it hurt to swallow and every now and then I threw up blood. I thought the Prednisone would fix everything, and that I might even get some muscles back because of it, but about a month after I started using it I had a severe skin reaction to it that became badly infected and could not be stopped. I was put on Accutane by a dermatologist, and this finally got everything under control, but not quick enough to keep my face from being scarred. So now I was not only a freak on the inside, but also a freak on the outside. After this, I took a year off from college, then I came back, and in my last year I found that my hemoglobin was 8.9, which explained why I had trouble making it up the four flights of stairs to my art classes. That’s when iron infusions started, and later came Procrit shots, and everything got worse (my control especially) as the years passed, so that I couldn’t stand very long –or walk very far- before having to go. I had one surgery to biopsy some swollen lymph nodes and rule out Lymphoma. The docs have wanted to remove my entire rectum, my ileum, and the last half of my descending colon for years now, because, due to thickening and narrowing, I can no longer pass stool without the aid of Miralax. But the Miralax keeps everything going so consistently that I can’t go anywhere without taking a handful of Lomotil to slow things down. Oh, I’ve also been fighting a perianal fistula that got big enough to pass gas through. Yowzers!!! Anyway, there’s a lot more than that (I filled the toilet with blood for like two years; I didn’t sleep for more than an hour at a time during the year 2004; I went to the Mayo clinic, tried Imuran for nine months and puked every day; I also had two bouts of acute Pancreatitis, and I've been on Remicade for the last six and a half years...) but I’m tired of writing about it all right now. If you’ve got any questions, I’ll try to answer them. If not, then just try and be well, whether you are or not.
Crohn’s will not always get us in the end!
That was a joke, by the way, that "in the end" part.... Ah, forget it!!!
Jason
