Louisville author and frequent Insider contributor Kevin Gibson nearly lost his life in 1990 to a disease that was misdiagnosed several times. Crohn’s disease, a form of inflammatory bowel disease (IBD), wasn’t as well known then as it is now, and it was often haphazardly diagnosed as a stress condition. Gibson recounts his 25 years of living with Crohn’s and its many complications in “Crohn’s Disease: A Memoir from the Toilet,” now available as an e-book.
Gibson looks back on the harrowing experience with rose-colored glasses at times, often injecting humor to smooth over drama — not as a way to downplay a near-death experience, but to show how his sense of humor kept him going.
He likens the experience of having a barium enema to being filled with 10 gallons of concrete; he writes that the noises inside his stomach sound as though “a bunch of giggling gnomes are having a tickle fight inside me”; and he recounts everything from hospital gown embarrassments to asking a nurse to marry him while sedated.
“It was a scary experience for me when I was sick, and digging through my mind looking for all those memories was emotional. But it was also cathartic in a way,” Gibson tells Insider about writing the book. “For one thing, some of the stories from my illness are truly funny, and if you can’t have a sense of humor in times of trouble — and some of it is literally potty humor — you probably won’t get far. But it also was a reminder of how strong I can be when I need to.”
More than 35,000 people died from Crohn’s in 2010, and there is no cure for the disease in which the body’s immune system attacks the gastrointestinal tract. The book’s preface sets up just how serious Crohn’s is to those diagnosed.
I’ll never forget when my surgeon told me I’d not get back to “normal” ever again. This was in the weeks following my 1990 diagnosis of Crohn’s Disease. I vaguely remember hearing the words “Crohn’s Disease” for the first time as I lay in a hospital bed.
What’s that mean? I thought. How do we cure it? And when will I be well?
And it was later that I found out about my “new normal.” When you develop Crohn’s, the old normal is out the window for good. And my surgeon was quick to tell me as much. As I moved forward and began to realize what I faced for the rest of my life, he often told me, “Once a Crohn’s patient, always a Crohn’s patient.”
Blunt, sure. For the record, though, he’s absolutely right. Another unforgettable statement he made to me during my early months of dealing with Crohn’s was, “You’ll become familiar with the public restroom everywhere you go from now on.”
Gibson had just moved to the small town of Zanesville, Ohio, in 1990 to work as a rookie sports reporter for the daily newspaper when his symptoms began. Just trying to find a general practitioner was half the battle — the other half was getting them to take his symptoms seriously.
One actually prescribed Xanax over the phone, saying it must be “stress.” An emergency room doctor whose beside manner Gibson described as “somewhere between Rosie O’Donnell and Charles Manson” told him to “Eat a salad and stop being such a baby.”
By the time Gibson came home to visit his family doctor, he had gone from 220 pounds to 155. He had a chronic fever, his stomach was distended and he was hallucinating. While immediately admitting him to the hospital, the doctors first thought it might be leukemia.
Asked if he’s upset now looking back at so many misdiagnoses, he says he’s not surprised given how little was known about Crohn’s at the time.
“Those doctors I saw were emergency room doctors who were up to their ears in patients with broken bones and heart attacks,” he says. “So here comes this guy they’ve never seen and he’s complaining about a stomach ache. It would have taken them a lot of time and effort to properly diagnose me, and that was time and energy they probably didn’t have. I think I got caught in a tough position because I was hours away from my family doctor and unable to get a general practitioner to see me in that small town. Timing. Bad luck. Call it what you will. That said, it was a little upsetting after the fact, given that they very nearly left me to my death.”
One of Gibson’s goals for writing “A Memoir from the Toilet” was to offer hope to anyone suffering or just diagnosed with Crohn’s.
“I would tell them it will get better and they can have a life with Crohn’s,” he says. “There is also a lot of support available in the form of organizations, websites and message boards. It helped me know I wasn’t alone. Also, someone who is diagnosed has an advantage in that there are many more treatments available now than when I first became sick. My treatment consisted of cutting out several feet of my intestines and fighting the resulting infection. I would be far more worried about someone exhibiting symptoms of Crohn’s but not getting a diagnosis.”
Gibson believes the silver lining in it all is the 25-plus years since the diagnosis, which he considers bonus years.
“That’s more than half my life, which is a pretty damn good bonus, given that by all rights, I should have died in 1990,” he says. “Also? I can’t really ever get fat because my body simply doesn’t absorb fat very well post-Crohn’s. And on top of that? Poop jokes. Who doesn’t love poop jokes?”
We’re behind you on that one.
“Crohn’s Disease: A Memoir from the Toilet” is available for $3.99 through Amazon, Barnes & Noble and more. Gibson hopes to print a limited run in the spring. He’s also author of “Louisville Beer: Derby City History on Draft,” which you can find out more about at kevingibsonwriter.com.