Copyright © 2014 by Kevin Gibson
All rights reserved
eISBN: 9780989266185
This book is dedicated to the memory of Joseph F. “Pappaw” McMahan, Maerene “Mammaw” McMahan and Toby.
Table of Contents
Acknowledgements
Preface
Leukemia?
Symptoms and History
Paging Dr. Manson
Enter Xanax
For the Love of a Dog
Voices in the Night (or, The Big Bang)
The Journey Home
You’re Sticking That Thing WHERE?
An Unexpected Diagnosis and the Aftermath
I Have to Pee!
I Fought the Fistulas, and the Fistulas Won
Ice Chips on the Menu
Back to Surgery
The Road to ‘Normalcy’ is Paved with Poop in a Bag
The Beauty of Re-Section
A Quarter Century of Crohn’s
About the Author
Acknowledgements
This book wasn’t a terribly easy one to write. I had to revisit a time of my life that I had buried deep within. In fact, I had planned to simply leave that part of my life there, forever hidden. But in the years since my early battles with Crohn’s Disease and the associated complications, people have been telling me, “You should write a book.”
The latest person to insist on this book becoming a reality was my girlfriend, Cynthia Bard. I would randomly tell her some snippet of a story during my battle for life in 1990 or mention my ongoing pain and frustration with my disease, and she would inevitably tell me, “You should write a book.” Finally, I did. I want to thank her for that.
But mostly I want to thank my parents, Ron and Jula Gibson, for the support they showed me during that first year and since. It was arguably harder on them than it was on me because, let’s face it, no parent wants to see his or her child suffer.
I also want to thank the rest of my family, from grandparents to aunts, uncles, cousins and more, who also were there to help and support. I owe special thnks to the late Joe “Pappaw” McMahan, who was one of the greatest men I ever knew and was a constant source of support and comfort during my illness, along with the late Maerene “Mammaw” McMahan. Of course, my friends were strong for me during that time as well, and there are far too many to name. In fact, you learn a lot about who your friends are when you’re down. I am no different.
I want to send out a special thanks to the late, great Toby, the little Lhasa apso that helped me survive my harrowing Crohn’s ordeal. He was special, and then some. I will miss him forever.
I also want to thank Cynthia, Fred Minnick and Kirk Kiefer for saving me from myself and editing this book for me (check’s in the mail, everyone!), and I want to thank Butch Bays for putting together the cover. I would also like to thank the model in the photo, whoever he is. (No, those are not my legs.)
Finally, I want to thank myself for surviving when I wasn’t sure I could. For surviving when I wasn’t sure I had any more fight left in me. Turns out I’m one tough son of a bitch.
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 that a hospital is the worst place to be if you’re sick.
And, boy, was I ever sick.
Symptoms and History
Blood. That’s my first clue. You should never have blood in your stool, especially when you’re in your early twenties and seemingly healthy as a horse. But one day, a few months before my ordeal begins in earnest, while going No. 2, I wipe and something feels different. I drop the paper into the toilet and look at my hand – and it is covered in dark red blood. What the ... ?
But if you have been reading carefully, you probably have noted that I am at this point a particularly stubborn twenty-something. So I brush off the blood as an anomaly. Eh, what’s a little blood among friends? More importantly, if I don’t tell anyone, it didn’t really happen. Right?
But it keeps happening off and on for the next few months. And I keep ignoring it. Why? Because I am young and healthy as a horse, obviously. Oh, and stubborn as a mule. (Or, perhaps I should say, a jack-ass.) It is around this time in my life, having earned my journalism degree and begun working as a reporter for the local newspaper, that I am determined to take the world by storm. I am going to be the best damn sports writer in the history of sports writers, and I am therefore looking for jobs that basically are anywhere but where I am, which is my hometown near Louisville, Kentucky. I want to move on, live my life and see the world. I feel at the time there are things about me that I need to learn. And that’s how I end up in ... Zanesville, Ohio.
Not long before making the move to Zanesville, my stomach starts making really weird noises. These noises are the likes of which I’ve never heard before, especially coming from a human stomach. It sounds (and at times feels) like a bunch of giggling gnomes are having a tickle fight inside me. Sometimes, the noises erupt in a strange and embarrassing gurgle (my stomach still makes those sounds, and they’re still really embarrassing).
In fact, I remember my stomach gurgling while interviewing for the job in Zanesville. As I sit there, gurgling with abandon, the newspaper’s editor either doesn’t notice or is too polite to say anything, probably figuring there was no time for me to stop and eat during the four-hour drive to the newspaper offices. So, I ignore it too. In a lot of ways.
And when I am ready start my new job in January of 1990, weeks before my twenty-fourth birthday, the fact that bloody stool and weird bowel sounds are a signal that something serious might be going on is the farthest thing from my mind. I am focused only on my exciting new journey, and kick-starting what I know is going to be a fantastic career as a writer. Very soon, however, these previously ignored signs begin banging down my door in unpleasant ways. And to top it off, I am alone in a town where I know almost no one.
Ironically, or perhaps just unfortunately, had I not moved I still would have gotten sick, but I would have been near people who knew me and who would have been able to see me deteriorate. They would have been able to nag me into seeing Dr. Wolverton, who had been my doctor my whole life, a lot sooner than I finally did.
But in Ohio, alone, with no friends around, nobody can really see the outward signs – and the doctors I end up seeing in Ohio simply don’t see what is happening, in part because they don’t know my history. And, as I mentioned, I’m a little stubborn. After the fact, countless people would ask me, accusingly, “How could you let yourself get in such bad shape?” Really? That’s like asking the guy who just got mugged and beaten up, “Why on earth did you carry your wallet with you?” Sometimes things just happen.
Anyway, back to the hospital; as I am considering this “leukemia” business, it dawns on me after the fact that when I was just 9, I began having stomach issues; I would get worked up over going to football practice and would inevitably get sick. Good ol’ Dr. Wolverton diagnosed it as gastritis. As I recall, he prescribed some sort of antacid, and before long I was as good as new and banging heads. I was still a lousy football player, but at least stomach pain wasn’t to blame.
Also, my late paternal grandmother had issues with her colon, and at one point she required surgery and for a time made use of a colostomy – of course, all I knew was that she had to poop in a bag. No one ever mentioned the word “colostomy,” to my recollection. I remember visiting my grandmother in the hospital during the this time. My mom was sitting next to her bed talking with her, when a strange noise brought the conversation to an abrupt halt.
My mom said, “What was that?”
And my grandma replied, “That was a fart.”
Whoa, I thought. You mean, they just come out whenever they find the exit? Bag-pooping is awesome.
And so those elements make me wonder if maybe, just maybe, it’s a fluke thing. Maybe there is hope. Leukemia doesn’t cause bloody stool. Does it?
Heck, I am a strapping young man. Sure, I put on a few pounds around the middle after high school, but the truth is that my shoulders are broad and my calves are like tree trunks. One of my friends would even sometimes jokingly refer to me as “the brawny lad.”
Well, about two weeks after I land in good old Zanesville, I go to the local State Farm agent to get a temporary health insurance policy. I pay around $75 for a 90-day policy (no such thing as COBRA then), and I am pretty sure I do this because I am already starting to subconsciously sweat the symptoms I am beginning to experience. I never would have admitted that at the time, but I can admit it now.
Not only are the gnomes getting feistier, but the blood in my stool is becoming more frequent. Worse, I am starting to experience stabbing pains in my gut. At this point, I have never – and to this day haven’t ever – felt anything quite like these pains. They are bad enough to stop me mid-sentence at times. They are occasionally painful enough to make me stop walking and force me to bend over. At times that year, they would hit me so suddenly that I would nearly cry out.