Tuesday, May 29, 2012

Crohn's update - and the only update I'll offer

One thing I hate talking about is my struggle with Crohn's disease. Diagnosed in August 2010, it's been an up and down battle of different medicines, treatments and symptoms. Part of the reason I hate to talk about it is because it's not a very "glamours" disease to talk about. For those that really know the disease, it involves issues with your digestive system which leads to extra trips to the bathroom. Another reason I hate to talk about it is it seems that everyone knows someone who is related to someone who has Crohn's and they'd love to match us up so that we can further talk about this annoying disease. But for those of us that actually have Crohn's, you know that everyone's disease is a little different - what works for me might not work for you, and what triggers my Crohn's (dairy and stress) aren't big triggers for you.

So I'm writing today's blog to give an update on my Crohn's, but I'm doing it with some rules. This is all I really want to say on it - sorry if I seem rude, but I don't really want to answer any questions or hear about your own Crohn's story. I don't want this disease to own or define me. It's only a small piece of my life!

Anyway, as of today I am officially taking Remicade to deal with Crohn's disease. Remicade is a biologic infusion that I will have to take about every month from now on. I've had a lot of reservations in taking it, but at this point it's really my only option. All of the other drugs aren't strong enough, and I'm on a large perscription on prednisone which isn't a great option. My biggest reservations have to do with some of the side effects - which are more prevelant in people my age. The big one is cancer, but it is also not a good drug to take when considering getting pregnant (not something I'm looking to do right  now - but it's definitely one of my life dreams.)

This all started about 2 weeks ago when I went into my Crohn's doctor for a test and he found that the Crohn's was flairing up. We started talking about moving to a biologic - the first option wasn't available due to insurance. As my doctors team was working out the insurance issues, I continued to get worse and worse, until I got to where I couldn't hold down any food and was experiencing constant cramping. I went to the ER on Friday and got some meds to help with the pain - but by Sunday morning, my doctored adviced me to come back in to be admitted. Once admitteed, he got the ball rolling to start the Remicade.

So far the Remicade has been fine - but I've only bee on it for a couple of hours.It looks like I'm going to get to come home on Wednesday, and hopefully the Remicade will deal with the extreme cramping.

What lies ahead with my Crohn's? I am in the process of trying to find another opinion. While I like my doctor, I'd still like to get another doctor's opinion. Other than that, I don't know and don't have any answers to it.

Sorry if I seems like I'm being vague or tight-lipped about my Crohn's. As I said early, I don't want this disease to define me, and this is one way I can fight and win that battle. I hope you understand and respect that.

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