What I Wish I Knew Before My Crohn's Disease Diagnosis

I remember the day like it was yesterday. June 22. My diagnosis day. I had been in and out of emergency rooms for weeks. I had spent hours at doctors’ offices. The months before I had been progressively becoming more ill, feeling more pain and eating less. And then I was diagnosed with Crohn’s disease.

Crohn’s disease is an inflammatory bowel disease (IBD), a chronic and incurable illness where my immune system attacks my digestive system. This can cause many symptoms such as pain, malnutrition, ulcers, strictures and fistulas. IBD affects an estimated 1.6 million people in the U.S. alone, according to the Crohn’s & Colitis Foundation of America, and it doesn’t discriminate. In fact, most IBD patients are diagnosed before they’re 30 years old, according to the Mayo Clinic.

When I woke up from an emergency colonoscopy and heard my surgeon throwing around terms like inflammatory bowel disease and ostomy, I was confused and scared. But it was more than that — I was sad. Sad for my ignorance. Prior to my diagnosis, I had never heard of Crohn’s disease. I had been living in the world and ignoring other people’s challenges. Not on purpose, but I was ignoring it all the same.

The one thought that consumed my mind was how. How had I never been aware of something so serious and so prevalent? What opportunities had I missed? Opportunities to help others. Opportunities to comfort and advocate. Opportunities to be with people who experienced such a life-changing sickness.

What might I have learned had I sought out people with Crohn’s disease? Everyone I met post-diagnosis who had this illness seemed to me to be happy, strong and full of joy. They seemed to truly enjoy life, even though their lives could be difficult.

I longed to know what their secret was. How did they embrace life so fully? Sadly, it took me getting seriously ill to find out how to feel the good in life as keenly as them. I wish I had known how to experience joy completely before I got sick. Everything I had overlooked while being healthy — all of the days filled with laughter and fun — now were remembered with regret for all that I took for granted. If there’s one thing I wish I had known pre-illness, it’s to embrace life and be grateful for everything, no matter how menial it may seem.

Now I fight so that others won’t have the same regrets I have. I fight for awareness, for redemption, for joy. I fight to create a world where Crohn’s disease is a household word. I fight for myself and for every other IBD patient. 

Follow this journey on Crohnie Journals.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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.

Lead photo source: Thinkstock Images