Posted by ImproveCareNow™ on June 10, 2025
My name is Adrian, and I was diagnosed with Crohn’s disease when I was 9 years old. For several months before I was diagnosed, I was slowly losing weight, growing paler, and having intermittent stomach aches. I would be in terrible pain, fall to the floor, and then it would pass almost as quickly as it came on. Neither my parents nor I thought it was anything serious at first. Initially my mom thought maybe I was lactose intolerant, so we cut dairy out for a while, which was a disappointment because my favorite foods were cereal and yogurt. Removing dairy, however, did not help.
I became extremely pale from the anemia, and I was losing weight. However, it happened so gradually that no one noticed for a while.
Then one day, in the third grade, we did the mile run. And on that day, I went over the edge. Before I was ill, I could run a mile in under 6 minutes, but that day I did it in 7 ½; not bad, but I was extremely disappointed and, at the end of it, I nearly collapsed.
By the end of that week, I was so sick I was admitted to the hospital. It was at this point my journey with Crohn’s disease really began. Until that point, I had never heard of Crohn’s. I didn’t know what an immune system was, so telling me my immune system was attacking myself didn’t really mean anything to me.
By the end of that week, I was so sick I was admitted to the hospital. It was at this point my journey with Crohn’s disease really began. Until that point, I had never heard of Crohn’s. I didn’t know what an immune system was, so telling me my immune system was attacking myself didn’t really mean anything to me.
I spent several days at Randall Children’s Hospital. Those initial days in the hospital seem like a distant memory, but I remember the confusion and fear. I remember being poked multiple times, while nurses attempted to place IVs in my depleted veins. I remember all of the tests that were performed to get to the bottom of my new diagnosis: ultrasound, CT, colonoscopy, and upper endoscopy. CBC, ESR, and CRP. It was overwhelming.
I remember the relief and anxiety blending into one when there was finally a name for what I had. It meant there was an answer, but it also meant it was real and, as I was beginning to understand, a diagnosis I was going to have to learn to live with. I vaguely remember the look of concern on my parents’ faces. They understood what I would only later be old enough to comprehend. This was not temporary. This was forever.
I remember the relief and anxiety blending into one when there was finally a name for what I had. It meant there was an answer, but it also meant it was real and, as I was beginning to understand, a diagnosis I was going to have to learn to live with. I vaguely remember the look of concern on my parents’ faces. They understood what I would only later be old enough to comprehend. This was not temporary. This was forever.
I was started on steroids initially. The weight and my color came back. We waited for the insurance approval for me to begin Remicade. And then that treatment started, and what that meant for my life quickly began to sink in. Every 6 weeks. The missed school days. Returning to the hospital for regular infusions. The stress and trauma of a million IV placements.
But the medicine worked for me! I was lucky.
Until it didn’t work. Shortly after my initial improvement came the abscess. I was 10.
I was fortunate that increasing my dose seemed to be the answer. But along with that higher dose came the terrible folliculitis, a skin infection with multiple sores covering my thighs, and associated abscesses, which required multiple drainages over several years, occurring both in a surgeon’s office and in the operating room.
After years battling these skin infections with regular trips to the dermatologist and surgeon, I have reached a pretty good place. I have used a lot of washes and creams with weird names, along with a slew of other medications, all arranged neatly in a pill dispenser to treat my Crohn’s and deal with reflux esophagitis, which was discovered on a more recent upper endoscopy. I have alarms on my phone, which alert me to the times to take my plethora of meds.
A couple of years ago the Remicade stopped working for me; my body began to destroy the medication to the point that it was no longer detectable. I am now on another biologic called Adalimumab.
I have tried other things too, to minimize my symptoms in the past. I have tried the Specific Carbohydrate Diet (SCD), which is low in sugar, dairy, and gluten. I spent a year strictly adhering to this diet. But it’s hard when you are 10 or 11 to eat no sugar. Birthday parties and sleepovers with cakes and cookies and cupcakes were challenging.
My mother would make yogurt in the Instant Pot to ferment it long enough to get rid of all the lactose, and I would eat gluten free bagels and pasta, which were honestly not that good. I did have one favorite recipe from those days that my mom would make for me. It was a recipe for chocolate muffins. Here’s the link ⬇️
https://www.glutenfreepalate.com/gluten-free-double-chocolate-muffins/
While I no longer eat such a rigid diet, I have taken away lessons from those early days of navigating the world of food as a person with Crohn’s disease. I continue to eat well and regularly exercise. Because while I can’t erase my disease, I have certainly learned to live with it.
And next time I’ll tell you all the things I do!