JJ Courtney is a certified public accountant (CPA) in Massachusetts who was diagnosed with Crohn’s disease in 2012. JJ is active in the Crohn’s and Colitis Foundation and is an avid runner, plays in the local soccer league, and does weight lifting and weight training.
Receiving a diagnosis of Crohn’s disease during high school wasn’t the best news I ever got. I wasn’t too surprised, though, when my doctor told me why I was having severe digestive problems. Both myfather and older sister have Crohn’s. The confirmation kicked off years of navigating ups and downs that led to where I am now.
Crohn’s diseaseis an autoimmune disease, so my body mistakenly attacks its own tissues. For me, it was mostly in the small intestine and perianal area (tissues surrounding the anus). Crohn’s causes periodic inflammation that can lead to intense cramps, shooting pain, diarrhea, nausea, and fatigue.
When I had a flare, the pain could be so severe that I would double over. Finding things to eat that I could tolerate wasn’t easy, soadequate nutritionfor a growing teenager was a challenge.
My First Symptoms and How They Felt
I started noticing symptoms when I was a sophomore in high school. I went to the bathroom often, but it didn’t slow me down. I was a three-sport athlete in track, soccer, and tennis. In the fall of my senior year, as I was filling out college applications, the symptoms got worse. Much worse.
When the pain hit, it came in rolling waves and felt like a knife in my gut. Only lying down on my left side, where my stomach is, brought me any relief, but it’s hard to study calculus or write a decent essay when you’re gritting your teeth.
Not too long after that, my primary care doctor ordered blood tests that came back with sky-high inflammatory markers. My parents got me an appointment with a pediatric gastroenterologist, and a colonoscopy confirmed Crohn’s.
In my senior year of high school, the symptoms started to get the better of me. The pain came in rolling waves and felt like a knife in my gut.
The Search for the Right Treatment
My doctor prescribed Remicade (infliximab), abiologic medication. Biologics (made from living cells) are the most advancedtreatments for autoimmune diseases. I got my first infusion delivered through an IV (intravenous line), and it was a revelation. I felt on top of the world. My appetite and energy came roaring back.
I was scheduled for an infusion every two months. After the first four treatments, the symptoms started up again around week six. Then, the symptoms returned at week four, which meant I had a month to tough things out. They started giving me more frequent infusions, but it wasn’t helping. I had developed antibodies to the biologic, which made it stop working.
One day, during a tennis match, I keeled over from the pain and was in tears on the bus ride home. I took steroids instead of the biologic for a while, but you can’t stay on those for long.
My GI doctor (gastroenterologist) recommended Humira (adalimumab), another biologic, the summer after high school graduation. You have four shots the first time, and the injections were incredibly painful.
You’re supposed to inject yourself after the initial dose, but I’m really anxious about giving myself shots. I didn’t know how I was going to manage, but my parents stepped up. My mom gave me the shot every other week for years, driving an hour each way when I was in college.
My Complications From Crohn’s
The Humira was working pretty well my freshman year, but Crohn’s had another surprise in store. The inflammation caused afistula, a sort of tunnel in the tissue going from my butt to my skin. It was right where my intestines contracted during a bowel movement, and it was excruciating. (It would take fivesurgeriesover eight years to get that under control.)
I managed to get a 4.0 grade point average that year, but it was intense juggling Crohn’s, classes, a vice president position in student government, and some kind of social life. It felt like everything was hitting at once.
I still hid my condition from most people, but a school adviser could tell I was struggling. They referred me to a psychotherapist, which gave me an outlet I needed badly. Between counseling and medication adjustments, my condition became more manageable, though I still had tocontend with flares.
Recently, I had another surgery that might have been due to Crohn’s, and this one was an emergency. Crohn’s can hinder your body from absorbing the digestive fluid bile, leading to gallstones. Mine were bad enough that I ended up in the emergency room, and the surgeon removed my gallbladder, which, fortunately, you don’t need.
I’m about to turn 30 now, and although I have been through plenty, I’ve also had long periods without a flare. I tinker with my diet, trying different types of nutritious foods that work for me, and I’m still an athlete.
Living Well With Crohn’s
Over the years, I discovered that people with Crohn’s form a tight-knit community, and I became active in theCrohn’s and Colitis Foundation. It’s great to have each other’s backs, and I would encourage anyone with an inflammatory bowel disease (IBD) to use their great resources. You’ll get a lot back and can give to others as well.
People with Crohn’s form a tight-knit community, which really helps when you need it. There is great support out there, and I would encourage anyone to reach out to the Crohn’s and Colitis Foundation.
My main message to you or someone you know who is dealing with Crohn’s is that there are many treatment and support options. Find a doctor you can work with, stick with your treatment plan, and take advantage of the knowledge and help available. You may have Crohn’s, but it doesn’t have to define you.
As told toNancy LeBrun
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