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How many hurdles are left?


Sat, December 31, 2016 5:15 PM

Hi all, 

Just a little back story about me and my experiences. I was diagnosed about ten years ago, at the age of 13. Let's just say that taking school photos while having full-blown prednisone moon face is not fun. Anyways, I was diagnosed with ulcerative colitis, and then later crohns disease. I have been on sulfazine, 6-mp, prednisone, remicade, and asacol. I was on remicade for about 3 years until my body developed antibodies to it, and I broke out in full-blown hives during an infusion. Then, my doctor decided we should switch to humira. I am currently on humira (every other week), lialda (4/day), and uceris (one/day). I remember being so hopeful as a kid newly diagnosed with this disease. I just knew a cure would come, and I just knew I would beat this. Fast forward ten years: a cure has still not come, and I still have not beat this. Not only have I not beat this, but I am on a medicine that comes with the risk of cancer and infections. I recently had a colonoscopy and my doctor took lots of biopsies, as per usual. The pictures of my colon did not show inflammation, which made me hopeful. However, the biopsies showed that I am still having inflammation. I have gotten to the point where I realize that the best way to describe this disease is a series of hurdles. It's like your life is just running on a treadmill of hurdles and it just doesn't stop. Sometimes I feel sad for the kid in me that is still hopeful. Because I know she's still in there; I can hear her every time I go in for a colonoscopy. Every time I start a new medicine. Every time I read new clinical trial results. Here's to the hopeful kid in all of me, and the hopeful kids in all of you; hopefully someday we can finally tell them we're finally done with all of these hurdles. 

FPO tiarg
Joined Nov 11, 2011

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