As I mentioned in my first post last week, I’m a Crohn’s disease veteran, with more than 15 years of fighting under my belt. I’ve tried many different kinds of treatments and have failed at all of them. This reminds me of how bad I was at math in school, and how, no matter how hard I studied, I failed tests and quizzes and sometimes barely passed until I took my final math course in college and finished with a C, never to look back.
At the time, failing math felt like the worst crisis ever. Now, with the benefit of age and maturity, I know that’s not true, but I also know something else: Some things, no matter how hard you try, end in failure.
I’m a wimp when it comes to medical stuff. I’m the one who cringes every time something medical comes up, from shots to tests to procedures. I whimper my way through all of them — no matter that I’ve delivered two children after two not-so-fun labors. Those toughened me up a bit, but the fact is I can’t stand the treatment options available to me, which all seem to revolve around needles.
All change again
Treatments are about to change yet again. The last was Cimzia once a week along with a shot of methotrexate. My husband did the shots for me as I covered my eyes. He’s very good at injections and they ranged from “OMG, that really stings” with Cimzia to “I didn’t even feel that” with methotrexate. Every Sunday I could feel myself getting tense as the day wore on, knowing that I was about to get injected, even though, really, in the end, the shots weren’t too bad. They were manageable. Doable.
They helped for a while. I was in remission for about three months earlier this year, leading a normal life, with the occasional bad day marked by mostly good ones. Then, as usual, there was a flare-up. I went back on my old safe friend, Prednisone. My taper ended months later, and I was off the Pred. for about a month. The flare-up began again. More Prednisone, then off for three weeks. Back on. We increased the amount of Cimzia. Seven weeks ago, (but who’s counting?) a new flare-up started. We’ve now abandoned Cimzia.
Just two weeks ago, Stelara was approved for patients with Crohn’s disease. In a few weeks, as a change, I’ll have my first infusion of that, followed by a shot every for eight weeks. I’ve done infusions before with Remicade so I’m not worried about it. It’s just another treatment to feel really mixed about — hoping I can get off Prednisone (again) and into another remission (again) and knowing the likelihood of remaining there is not high.
Shots. Infusions. Hope. Despair. Change, hope again. My cycle goes on.
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