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An Identity Crisis: Ask Me About My… Crohn’s Disease?!

Posted Sep 05 2012 5:14pm

This morning, I went to go see my doctor. I was overdue for a visit to discuss the results from an extensive amount of testing and bloodwork that I had done this spring.

Turns out I’ve been wearing the wrong shirt.

Don’t ask me about my colitis, because that’s not what I have. I have Crohn’s disease.

I have Crohn’s disease.

I have mixed emotions about this new information, so let’s walk through it, shall we?

On one hand, I am certain this is the disease I have always had. My original GI doctor actually thought I had Crohn’s disease before he did my colonoscopy. But until this year, that was the only diagnostic test I’d ever had. This year, I had a full work-up that included an upper and lower GI, a barium MRI (worst test ever), and the doctors taking about half my blood to run various tests. I am confident that this diagnosis is correct. I have a new doctor that I love and trust, and everything he explained to me makes sense.

And it’s good to have the right name for my disease. It’s good to have all the information and for my doctor’s to have everything they need to get my the best possible treatment. There is power in knowledge, and I am more confident than ever that I am armed with all the best knowledge now.

On the other hand, I feel a little lost. My fundraising page for Team Challenge talks about my ulcerative colitis. This blog talks about my ulcerative colitis. My clothing says ulcerative colitis. And all of that is wrong now. Do I change it all? Update it? Add to it? I know these all seem like small things, but it’s a whole lot going on in my head.

This shirt has already been ordered. In fact, one of my first texts sent after my new diagnosis was to Andrea from the Great Bowel Movement, asking about what they had in stock. I have priorities, yo.

I’m also scared because Crohn’s disease has a stronger genetic component. I think this fear is a little bit irrational. I have been reassured by friends more knowledgeable than I and some ridiculously smart doctors that the difference is not statistically significant. But what can I say? I can be pretty emotional. I know I want to have kids someday. And I know I’ll feel awful if I pass along this disease. So I worry a little. I’m trying to shake that one.

It’s also a bit alarming to know that my disease is also in my stomach and small intestine. I orginally thought this meant that the disease can pop up all over the place in my digestive tract. And while it can, Dr. Rubin e-mailed me immediately after my panicked update to friends and family to assure me that it is highly unlikely that my disease will do that. Once it picks a spot, it apparently likes to hang out there. So that is good news. My Crohn’s already has its home in my body.

All in all, it’s just a name. My disease is the same disease I’ve had for seven years. It’s still Inflammatory Bowel Disease. It just has a new name. Still, if you want to donate to help ease my current mental freak out, I’d appreciate it a whole lot. I want to hit that $5000 mark and kick my Crohn’s in the face. Click here to help me .

Have you ever gotten hung up on a name? What’s in a name? Got any big news to share?

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