I was diagnosed with Crohn's Disease in December of 2001. I slowly started having symptoms a few months before that. I was going to the bathroom more frequently, and eventually had nausea, stomach pain, bloody diarrhea, vomiting, decreased appetite, and weight loss. I saw a gastroenterologist who did a colonoscopy and upper endoscopy. Since my brother, mom, and my mom's side of the family had a history of Crohn's, it was a relatively easy diagnosis. I was put on an extremely high dose of Prednisone, and a few other medications, and I improved after a few months.
Most of the time after that was spent trying to taper off of Prednisone and stay off of it. I've been fortunate enough to at least avoid any hospitalizations and surgeries. For the next couple of years, I would taper the Prednisone and start having symptoms again when I got to 5-7.5mg. During that time, I tried Sulfazine, Entocort, Mesalamine, Pentasa, Azathioprine, and some other milder medications I know I'm forgetting, but none of them allowed me to stay off Prednisone. I was on various dosages of Prednisone until Remicade was approved for Crohn's. Remicade was effective for about a year, and it allowed me to stop taking Prednisone for a little bit. Remicade became less and less effective as time went on so my doctor switched me from Remicade to Humira. Soon after I switched to Humira, I started Methotrexate. I was able to achieve remission for about a year and a half without Prednisone. I stopped Methotrexate after about 6 months because I was concerned about its side effects.
Between long term Prednisone use and active Crohn's for so long, I didn't grow much during those years. I saw an endocrinologist who tested me and determined I wasn't producing much growth hormone naturally, and my bone age was behind my chronological age meaning I still had potential for growing. He put me on growth hormone and I grew 4.5 inches over 2 years. It didn't seem to have much of an effect, positive or negative, on anything else.
The same thing that happened with Remicade happened with Humira, and it eventually stopped working, starting my most recent flare up in the Fall of 2009. I did numerous rounds of Xifaxan which helped a bit, but less so each subsequent time. I finally resorted to trying Prednisone again and, after a week on 40mg, there was no improvement. After that, I switched from Humira to Cimzia. I noticed improvement after the first 3 startup doses, but it stopped working soon after. I tried the Specific Carbohydrate Diet for 2 months with little success. I finally convinced myself to try smoking marijuana and I regret not doing so sooner. It alleviated every symptom. That wasn't a long term solution I was satisfied with, though.
My GI was out of things to try when Cimzia stopped working except for referring me to a psychiatrist. Nothing major happened with that. He put me on Amitriptyline which helped a bit with pain. After some Googling, I ran across Naltrexone and gave that a shot. I noticed a slight improvement after 8 weeks but, again, not enough. Then I read about the stem cell transplant, called to get the process going and went for an evaluation 2 months later, got accepted for the transplant, and that's where I am now.
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