When I Assumed I Was Better and Stopped Taking My Medication

It was early summer, 2008. I was working at my local gym as a personal trainer. I had also been living with Crohn’s disease for six years. Earlier that year I felt so good, and my dose was so low, I thought, “Probably isn’t doing much anyway.”

I think you know where I’m going with this… I made the classic blunder of a chronically ill person who feels so good, they start thinking they are a “normal” person, and I stopped taking my meds.

It started innocent enough. I had a few mouth ulcers, some red lumps on my legs, joint pain, and lower back pain, which are all symptoms of active disease. Nonetheless I was able to justify those symptoms as other ailments. The mouth ulcers — must have bit the inside of my mouth. Lump on my leg? I probably ran into something at the gym. Joint and back pain? I probably over-did it during my last work out.

I’ll admit it had crossed my mind that I might be having a Crohn’s flare, but I dismissed the thought quickly. I figured, “How could I be in a flare when I wasn’t having any pain in my gut?” But that Crohn’s is a sneaky bugger. Suddenly it had an immobilizing hold on me. I’ll never forget the morning I woke and could not move; I felt paralyzed!

I called my GI doctor and he ordered some tests. You know, just the usual blood work, and poop in a cup. And he put me on prednisone. I was so mad… Mad at Crohn’s and mad at myself (cue self-loathing). All I wanted was to feel normal.

Even though I was taking three-hour naps and still sleeping at least eight hours at night, I was physically and emotionally tapped out. I hired my adult daughter, who was saving money for school, to clean the house for me. I found other trainers to take on my clients. My own exercise routine suffered significantly and I gained 20 pounds. I’m not a skinny Crohnie. I don’t look all that sick, maybe just a little tired. I will struggle with every miserable symptom that is associated with this disease, but I can hide it well because I never lose extreme amounts of weight — the prednisone makes sure of that. I felt like I had been beaten, but Crohn’s wasn’t done with me yet.

Fall arrived and things just kept going downhill. I had bursitis in my left hip and I broke my right great toe. I was off the prednisone, but still felt awful. Eating was like playing Russian roulette, sometimes food went down without incident, other times it felt like shards of glass ripping my guts apart. My doctor told me that he wasn’t sure what to do for me anymore and sent me to see an inflammatory bowel disease specialist at the university hospital. A scan and pill camera endoscopy showed that my small intestine looked great, but it was the colonoscopy that showed the disease was still very active in my ravaged colon.

Instead of prednisone, my new doctor gave me two antibiotics to take. Despite having an adverse reaction to one of the antibiotics and then an allergic reaction to the other, I did get better. It wouldn’t be until mid-2009 that I would consider myself in remission, almost a full year from the day I thought I was “normal” and stopped my meds.

I used to think, “Boy, oh boy, what could have been if I had just stayed on my meds!” It took a while, but I no longer beat myself up over this series of events. I’ve learned from it and have moved on.

The good news: I’m still in remission, I’m still with the university doctor who has since joined a private practice that is minutes from my home, and my daughter finished school. I have also come to the realization that everyone has their own unique version of “normal.” I’ve accepted that my normal involves Crohn’s disease and medication.

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