Deciding to Blog About My Stupid Crohn's

Possibly one of the hardest things I've dealt with related to my (stupid) Crohn's is the decision to blog. Sharing intimate details about my life with the world is hard, and I admire people like Amy Tendrich and Drew Olanoff, who do it and do it well. There are many, many people in my life who don't even know I have Crohn's, because I've chosen to keep it secret for so long.

I think ultimately I've decided to do this because with a stigmatized condition like Crohn's, it IS hard to talk about publicly, so I hope that if I talk about it, others will too. And if we're all talking about it, maybe it won't be so hard to talk about anymore.

My name is Carly, and I have Crohn's Disease.

I hate it. It's stupid. It keeps me from getting to do everything I want to do in life. It causes me pain. It costs me money. I never asked for this stupid disease. I can't get rid of it. It messes with my body, it messes with my mind, and sometimes it messes with my relationships. I hate that one day I will have to explain to my daughter why I have to go into the hospital, and why I have to take so much medication. I hate that because of this, I have to be so much better at balancing the rest of my life just to make room. Crohn's, you suck.

But I know I'm not alone. And I hope to hear from others with their own battles with stupid Crohn's, stupid IBD, stupid any stigmatized condition.

Study Finds Earlier Biologic Use Boosts Remission in CD (via MedPageToday)

A study reported in MedPageToday finds:

"The addition of an anti-tumor necrosis factor (TNF) biologic agent early in the course of Crohn's disease may improve the likelihood of clinical remission and possibly modify the course of the disease, researchers said.The combination of infliximab (Remicade) and azathioprine (Imuran) after failure of first-line therapy instead of holding it as the last option roughly doubled steroid-free remission and mucosal healing rates compared with azathioprine alone, William J. Sandborn, MD, of the Mayo Clinic in Rochester, Minn., and colleagues found."

This is an interesting finding. I believe many GI's still consider Remicade, Humira and other biologics as a last resort, and not being a medical professional, I'm not sure why. However, my personal experience with Remicade - very positive - makes me wonder if it shouldn't be considered a first-line therapy in itself.

My Diagnosis Story

In 2002, the weirdness began. I would drop 10 pounds in a moment. My hip joints hurt. Doctor after doctor couldn't tell me what was wrong, as month after month went by.

Then I had a routine annual with my gyno, one smart chick, and I mentioned it to her. She thought for a moment and said, "you might have Crohn's Disease."

I had a colonoscopy, and in recovery the GI confirmed my other doctor's suspicion.

I started looking up Crohn's Disease online. I had no idea what it was. This was before many of the more positive websites and forums existed, and what I saw scared me. I was so terrified, that on the phone with my diagnosing GI I told her I wanted a second opinion. She started screaming at me, thinking that I was doubting her. Crazy lady.

After a bit more research, I started seeing a Fellow under Dr. Peter Banks - a great move. This team got me healthy quickly, and I was in remission quickly thanks to a mix of medication and stress-reduction.