When I Was Diagnosed With IBD, a Disease I’d Never Heard Of

I can honestly say I’d never heard of Crohn’s disease, or any type of inflammatory bowel disease (IBD) for that matter. I’d seen the commercials on TV — the spinning camera constantly panning back to bathroom signs, the actor desperately looking for a bathroom to find relief.

What if, what if?

I know now these commercials are loathed in the IBD community. But back then I never gave them a second thought as they rattled off the list of possible side effects — really scary stuff there. I thought to myself, “Who would want to do that to themselves? Why take those risks?” I’d just take my chances with whatever this medicine is used for.

Let me tell you: Ignorance is truly bliss. For me, it started with what I thought was a stomach flu.

On the third day of living in the bathroom and pain that just wouldn’t let up, I finally called my husband saying maybe he should come home because I didn’t feel right.

Funnily enough, I had just been to my primary a few days before this all started for an inflamed eye. I’d later find out that was related to my Crohn’s disease. (Yet another fact not told to me in the beginning: Crohn’s can affect your eyes. This is important information.)

Fast forward to me sitting in the emergency room thinking I was wasting not only my afternoon, but also my husband’s. As I’m standing in one of those glamorous hospital gowns, poised in front of the X-ray attached to the wall, I’m thinking, “Really? This can’t be necessary.”

Not too long after, the doctor comes in the room. “Looks like you may have a partial bowel obstruction.” Excuse me, what? Did he just say bowel obstruction? I have the flu!

So I’m treated to my first CT scan. I’ve now had too many to count. The nurse hands me a plain styrofoam cup with the oral contrast mixed in to drink. There was no warning of what’s to come once you start to drink, or at least try. No warning that this may cause your stomach pain to increase, it may cause you to vomit. There’s very little information given in an emergency setting. Sadly, in my experience, it’s not much better in a non-emergency setting.

“Yup, you have a partial bowel obstruction.”

I was given some antibiotics and a print-out about Crohn’s disease and sent on my way with a referral to a local gastroenterologist.

That’s it! That’s how they tell people about this kind of stuff? They sent me home telling me I may have a disease I’ve never heard of that will change my world as I know it. It took three more years to get an official diagnosis. There were countless doctor and ER visits, scopes and embarrassing tests. There was no one to reassure me or tell me I wasn’t the first person to be in this position. No one warned me that there are a lot of unsympathetic medical professionals I would be coming in contact with on a regular basis, professionals who don’t understand — or maybe don’t have the knowledge to understand — how this disease affects people.

I had to learn to advocate for myself, to ask questions and not blindly agree with everything a doctor told me. I had to find my voice. It’s been a long road since then and an adjustment, not just for me but for my family as well.

If I could go back in time to tell myself what to do, I’d say: Don’t be afraid to be honest with your doctors. If they aren’t receptive, get a new doctor! Trust your instincts. You know your body.

Learn what you can about your disease, because it’s not going anywhere.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.