After weeks of crippling pain in my abdomen, I sat in my dorm room, searching Google for answers. I searched, “What does a kidney stone feel like?” and “where is the appendix?” more than once. Then I started noticing blood in my stool, and I knew it was time to ask for help from someone other than the Internet. A visit home to see my doctor led me to a preliminary diagnosis of Irritable Bowel Syndrome. I headed back to school, plenty of fiber supplements in hand, ready to start feeling better. But it only got worse.
Just a few weeks later, I called my parents at three in the morning. I was exhausted, I hadn’t eaten much for weeks, and I was losing so much blood I was lightheaded. My parents sprang into action immediately. Dad was nearby, traveling for work, and promptly cancelled all his appointments for the day. He arrived later that morning, and we headed home to attempt get some answers. I lay on the back seat of his company car, terrified.
While my dad and I were driving home, my mom was busy doing something magical. She somehow already set up an appointment with a gastroenterologist for that afternoon, as well as a colonoscopy for the following day – before the doctor had even seen me! (By the way, I got an ulcerative colitis diagnosis after that first colonoscopy. Seven years later, it was corrected to Crohn's disease.)
At the time, I had no idea how incredible it was that my mom managed to do that. Sure, it was nice, but it was kind of her job, right? Eleven years later, that looks a bit different. After years of dealing with doctors’ offices, specialists, and hospitals, I know that it can sometimes take months to get an appointment. Somehow, she just made it happen.
The next week, Mom drove me back to school and lived in a hotel down the street. She sat with me as I choked down steroids and new medication, and took care of me until I was ready to be on my own again. I don’t know how I would’ve done it without her.
Seven years after my diagnosis, my disease changed. Okay, I had Crohn’s disease all along, but in 2012, I finally found out that’s what it was. After a bad flare, I decided to go see an Inflammatory Bowel Disease specialist. When I went to see him for the first time, he asked how long I’d had Crohn’s. I stopped him and said, "Wait, I have colitis.” He looked at me and said, "Well, we'll see when we do your scope." Sure enough, he was right.
Initially I panicked, for a number of different reasons. I’d spent seven years adjusting to a diagnosis only to find out it was wrong! A good friend helped me realize that the name didn’t matter. The new diagnosis didn’t change my disease, but it did give my doctors the best information to inform my treatment.
I don't have any set advice for anyone newly diagnosed with Crohn's. In fact, if someone I knew was diagnosed, my reaction would be to listen, rather than talk. I wouldn't want to overwhelm them with too much information right off the bat.
I figure I have it, like it or not, and the only thing I can control about it is my attitude. So I might share some of the blessings that it has brought into my life. Because of this disease, I’ve met incredible people, including some of my closest friends. I’ve also learned to dig deep during hard times, and find strength that I never knew I had.
If I didn’t have Crohn’s disease, I doubt I would’ve started working for the Crohn’s & Colitis Foundation of America, at a job I am incredibly passionate about. How many people can say they love getting up to go to work in the morning?
Recently, I also started training to become a lay chaplain, so I can have pastoral visits with hospital patients. I’m thrilled to have the opportunity to reach out and support people in my parish who are ill or homebound and just need a visitor. I know how important good company can be when you’re sick. (Here’s hoping they find me to be good company!)
I am certain that if I didn’t have Crohn’s, my life would look entirely different than it does today. And I love my life. In a lot of ways, I'm really, really lucky.