Crohn's Disease: A Memoir From the Toilet

By Kevin Gibson

"Crohn's Disease: A Memoir From the Toilet" is a funny and candid look at the author's journey through Crohn's Disease. A must-read for anyone suffering from Crohn's, colitis or any form of inflammatory bowel disease, it is also a revealing and emotional read for any audience. The author, a self-described "Chronie," recounts his journey from pre-diagnosis to his current life, telling stories that can alternate from hilarious to heart-wrenching.

• Language: English
• Publisher: BookBaby
• Release date: Jan 20, 2014
• ISBN: 9781483547633

Book preview

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Preface

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.

Oh boy. But it’s undeniable: Crohnies always know where the nearest toilet is. Here’s an example, something that happened during a visit to England in 2005: As I’m walking through Liverpool City Centre with my friends, I announce, I need to find a restroom. Like, soon.

Fortunately, a McDonald’s appears about a block ahead of us. When we approach, my friends say they’ll wait outside while I go in. There’s a 20-something man mopping the floor and wearing a McDonald’s uniform just a few feet away from the entrance, so I approach him.

Excuse me, I say, can you please tell me where I can find a restroom?

He looks around the place, appearing somewhat confused by my question. Um, you’re in a restaurant, mate.

I’m sorry, I say. Restroom. I need to find a bathroom.

Ohhhh, he says, his voice filling with sudden recognition. You need a toilet. Upstairs and to the right, mate. Cheers.

Note to self: When on holiday in the U.K., always ask for a toilet, not a restroom. Otherwise, they’ll just think you’re hungry.

And on and on it goes.

I think what was worst for me when I was first diagnosed with Crohn’s Disease was the reaction I got from friends, acquaintances and such. In those days, so few people knew what Crohn’s was that it was easy for them to be taken aback, perhaps thinking you carried some dreaded exotic malady that came here by way of infected rats on a Viking ship.

Hi, I’m Kevin Gibson, and I have Crohn’s Disease. Interestingly, for someone who was thoroughly unpopular and mostly invisible in middle school and high school, it was almost like having yet another social black mark. It was painful, and not in the way Crohn’s is physically painful – I truly feared I would forever be an outcast because of this disease that had been thrust upon me.

But this book isn’t about any sort of complaint or self-pity over my life with Crohn’s Disease. What I hope to do is share an often humorous and always honest chronicle of this journey. Yes, it has at times been devastating, but I’m nearly a quarter of a century removed from my Crohn’s diagnosis, and I lead an active and relatively healthy lifestyle. The point of my story is this: You can survive it, you can manage it, and you can lead the life you want to lead. You just have to believe in all those three things and not let go of that belief, no matter how much you may feel compelled to at times. You also have to buy lots of toilet paper.

But best of all, you can ultimately get to a place where you can have a sense of humor about Crohn’s Disease. I believe that is a big part of what has gotten me this far into my journey with Inflammatory Bowel Disease, which encompasses Crohn’s as well as Colitis. My philosophy has always been, well, since there is no definitive cause for Crohn’s, and there is no known cure, so you might as well just make the best of it and have fun with the poop jokes.

That said, this is my Crohn’s Disease story, and I’m sticking to it.

Leukemia?

Dr. George Wolverton was a family practitioner, but he actually could have passed as a mad scientist. He had a halting manner of speaking, and he tended to draw out the last word of each phrase: OK, nooow, open wiiiiiiide. All this, combined with the silver hair slicked tight to his head and wire-framed glasses pushed to the end of his nose, nearly made him a Golden-Age horror movie cliché. Nearly. In reality, he was a hyper-intelligent, politically savvy and good-natured man. On this Saturday in May 1990, Dr. Wolverton is examining me with a concerned, even perplexed, look on his face.

What do you think is wrong with you? he finally says, slumping onto a metal stool in the exam room and showing a measure of defeat I’ve never seen in the man.

You’re the doctor, I counter with a shrug. You tell me.

He laughs heartily at this. He has attacked my lymph nodes with his fingers during the exam, as well as the usual assault on my chest and back with the ice-cold stethoscope bell. I now sit, slumped and skinny, on a 1950s-era examination table covered with a strip of paper that was replaced after each patient exam by way of a huge, seemingly endless roll attached to the end of the vinyl-covered, steel behemoth.

Dr. Wolverton decides I need to be hospitalized this very day; some of my immediate symptoms – extreme weight loss, fever, vomiting – initially make him think I am suffering from leukemia.

Leukemia?

That’s not a word you want to hear at age 24 – or at any age, for that matter. It can’t be leukemia, can it? It was sometime near the end of 1989 that I had decided to set out on my own to unleash my writing career on an unsuspecting world. I was a sports-playing, healthy, 220-pound guy at Christmas. And now, my doctor looks me in the eye and talks about leukemia? My mind rejects it as I re-robe in that small exam room. He then tells me he wants to run a few tests during my forthcoming hospital stay.

Am I really that sick? I have never really been sick before, so in this surreal moment, I am unable to grasp the gravity of just how serious it all is. Which is to say, at this point I apparently am really, really sick. You know, when you have the flu or you get a bad piece of swordfish, you’re sick, but you’re not really sick. Even as you’re throwing up your guts into the toilet, you know the light at the end of the tunnel is coming fairly soon. No one says the word leukemia or wants to put you in the hospital to run tests at that moment. But when you’re really sick, you have no idea where the end is or what it will take you to get there. At this point, I’m wishing all this was about the damn swordfish.

Anyway, when I hear the word hospital, I have two immediate reactions: One is that of stubborn denial, while the other is relief. One side of my brain insists, Hell no! I have to be back at work on Monday! The other side lets out a long sigh and says, Thank god. Because I can’t do this anymore. That’s how I know I am really, really sick. Because I’m not one to admit I’m not well – even after a bad piece of fish.

Unfortunately, I am under the illusion as I consider this hospital proposition that they’ll take some x-rays and maybe give me a pill or two, and I’ll be on my way to recovery. Yes, he may have said leukemia, but that was a clinical diagnosis, not a final one. Something is indeed very, very wrong with me, but I can’t let myself believe it is leukemia. I just can’t. Or maybe I am just too weak, too tired from fighting through whatever I have been fighting through, to really entertain the possibility that the fight is about to get even more difficult, more soul-destroying.

My symptoms are all over the board. Vomiting? Check. Fever? Check. Weight loss? Yep. Night sweats? Oh yeah. Intense abdominal pain? Absolutely. Night-time hallucinations? Yes, I even have those. I am so sick, that in the afternoons I actually subject myself to sitting still and watching Oprah on TV. Now that’s what I call sick.

As I prepare to ride to the hospital that afternoon with my mom and dad, however, I have no idea that I am facing the battle of my life just to get to the point where I can function like a person again. And I have no idea at this point that I will never truly be well again in my life. And as my parents and I walk into Clark Memorial Hospital in Jeffersonville, Indiana, I have no clue I am about to embark on my first official day of what my surgeon will later refer to as my new normal.

And so I spend the better part of the next three days lying in a hospital bed, wondering if I have leukemia, and let me tell you: a person does a lot of thinking when he or she feels they’re going to die. I am weak; I can no longer function on my own. I think about all the things I want to do in my life but have not. Heck, I thought I was just getting started, and now it may be all over? When you’re young, you view death the way you view a star or planet – it’s there, but it’s so far away that it almost isn’t. When your family doctor looks at you and says the word leukemia, that feeling of invincibility departs in a hurry. I am in shock. I am a little angry. But mostly, I am just scared. Very, very scared.

Soon, the doctors and nurses begin putting me through a series of tests that to me resemble something the Geneva Convention would likely refer to as torture. I learn quickly