Book Excerpt: My 35-Year Journey With Crohn’s Disease
Ten years ago, for the 25th anniversary of my diagnosis of Crohn’s Disease, I wrote a book — I released it only as a Kindle book, but I decided to revisit it by posting an excerpt or two on my blog. This is most of a chapter from that book, titled, “Crohn’s Disease: A Memoir From the Toilet.”
This chapter takes up after I had first been admitted to the hospital, when doctors still had no idea what was causing me to lose so much weight and run massive fevers. As this excerpt picks up, I’ve been put through a battery of tests, one of which involved me drinking ridiculous amounts of Milk of Magnesia.
(Here’s an Amazon link to buy the e-book.)
* * *
Well, about 20 minutes after I settle back into my bed, another orderly comes calling, pushing an empty wheelchair.
“Mr. Gibson, I need to take you down to the x-ray lab now,” he tells me.
“Another test?” My heart – no, my very soul – sinks. I literally am not sure I can take any more, emotionally, physically and otherwise. But I have no choice. I climb to my feet and drag myself into the rolling chair of doom. Anyway, here comes the barium enema. I’d say a fair percentage of people have experienced a regular enema, but an enema of the barium variety is a different beast entirely. Saline solution, or whatever the typical enema, er, entails, is not liquid metal, for one thing. It’s also not syrup-thick. Having something that thick forced into a place that was designed as an exit is not pleasant.
But force it they do. Actually, though, the indignity begins before I even get inside the laboratory. Maybe they need to re-set their tools of cruelty or simply need to stop cackling from the torture they’d inflicted on the victim before me, but when I am dropped off in my wheelchair, I am told, “Have a seat. It will be a couple of minutes.”
OK, bear in mind, my underwear has never been returned to me. I am in a blood-specked hospital gown that in all likelihood is designed for a twelve-year-old girl. And I am sitting in a busy hospital hallway, with people walking by in search of family members’ rooms; nurses and orderlies pass by, joined by patients taking plodding walks with their IV trees rolling along next to them.
And there I sit, bare-assed on a blue plastic chair, trying to keep my man parts covered. I don’t mean to brag, but it isn’t working. I am really starting to miss my tighty-whities at this moment. And then a couple of minutes turns into fifteen or twenty. At least. I am seated near the laboratory sign-in window, and I ask the rather gruff woman working the window at least twice if she can tell me how much longer I’ll have to wait. Each time she replies, “Sorry, I don’t know.”
I am cold; I tremble. I am sick to the point it is laborious to stand, my body has been through a battery of tests already, and now I’ve been suddenly and unceremoniously dropped off like an unwanted puppy on a country roadside. I look around, assess my situation, and literally think, This has to be a nightmare. There is no way this can actually be happening to me. Yet, somehow, it is. This is a moment in my life I can recall with extreme clarity, because I don’t know when I ever have felt a greater sense of helplessness and despair.
“I look around, assess my situation, and literally think, ‘This has to be a nightmare. There is no way this can actually be happening to me.’ Yet, somehow, it is.”
Finally, the orderly comes out of the x-ray lab and says, “Mr. Gibson?”
“Yes,” I say, and I gingerly stand up and shuffle into the waiting darkness of the lab. What I don’t know is that the fun has only just begun. I hear them utter the dreaded “B” word again, but this time, there is no barium to be ingested – they have it conveniently set aside in a big plastic bag that has a rubber tube attached. They tell me to crawl up onto the metal table, lie down on my left side and raise my gown. By this point, the phrase “lie down on your left side” has begun to create a sort of Pavlovian sense of dread within me.
I half expect the x-ray tech, a dark-haired woman who is just too busy to say hello, to ask me if I have any last words. She doesn’t. Then the orderly, who is holding the rubber tube, speaks: “I’m going to insert this, then the end will blow up into a bubble so that it can’t come out.”
“Sounds great!” I wisecrack. The well-built, sandy-blonde young man with hairy, freckled arms looks at me like I’ve just turned into a mime. It becomes clear my jokes will not save me this time; I keep them to myself during this procedure.
So, in goes the tube, which in itself is humiliating enough. But once that balloon is in place and they know that bag isn’t going anywhere, they hit me with it – the tidal wave of barium. Oh man, there’s just no way to describe this feeling. It literally fills me up; imagine the worst constipation you’ve ever had and quadruple it. As in, are you sure that’s barium? Could it be concrete? Moving even slightly is agony; I hear the x-ray machine buzz, and I think, Thank god, that didn’t take long. It is about then that the orderly says, “OK, we need you to roll about 30 degrees to your right.”
“What?”
“The x-ray technician needs to get several different angles,” he says.
So I move into the position requested. I moan. The x-ray machine buzzes.
“OK, keep going.”
I move another 30 degrees or so, moaning. Bzzzzzz.
“OK, now roll onto your back.”
I turn my head to look into his eyes. “Are you serious?”
“Is that a problem?”
Um, potentially. I have what feels like 10 gallons of liquid metal inside me, and a big plastic bag sticking out of my butt. Imagine, if you will, that hemorrhoids had a deity – that’s what is protruding from my nether region at this moment. So, you know what I do? I roll over onto my back like the man said. I don’t know how I do it, but I do it.
Bzzzzzzz.
“OK, now roll about 30 degrees more to your right.”
“I can’t.”
“Why.”
“I’m stuck.”
So the orderly gets on the other side of the table, rolls me himself with his hairy arms, and then tells me to hold my position. My right elbow has gotten trapped under me, so I have to awkwardly lean back on my left elbow, contorting my torso just enough to remind me that – heads up! – I’ve got 100 gallons of liquid metal inside my colon. (I know I said 10 gallons earlier. But this is my story, OK?)
When this undignified affair finally works toward closure, and the orderly deflates the balloon inside me, it feels like I am being gutted, as this reverse tidal wave of pink nastiness gushes from my anus like a water slide from hell. It is instant relief, and yet … it isn’t.
The orderly tells me he is going to remove the tube, and he gradually does so. And yet, I still feel, well, full somehow. Violated and full. He then informs me that I will have to pass the excess barium myself.
“How?” I say.
“In the bathroom,” he replies.
“Where’s the bathroom?” I ask, knowing I will not be getting a satisfactory answer at this point in time.
“It’s over there,” he says, pointing to a door across the freaking room.
“I’ll never make it,” I tell him. My rear end has already begun leaking pink goo onto the metal x-ray table. And do you know what this orderly actually has the nerve to say to me, after all he’s put me through?
“Try.”
Son of a mother.
So I climb down from the table. I feel the first wave crashing toward the beach. I start to shuffle, taking toddler steps to avoid unclenching; this only makes it worse. The bathroom is probably 15 or 20 toddler steps away, but I only make it about five before the floodgates open.
What amounts to bright pink diarrhea gushes from me, splattering all over the circa-1970s tile floor, drenching my legs and the bottom of my stylish, twelve-year-old-girl hospital gown. I finally make it to the toilet, splattering the bathroom floor, as well as the toilet seat, in the process. I have no choice but to sit down in it, and the stuff just keeps coming. Each time I think it has reached an end, I wipe and wipe and wipe, then stand up – and then I go ohmygod! Then, I sit back down and another wave comes.
When it finally ends, some, I don’t know, maybe 20 minutes later, I walk out of the bathroom. The floors and exam table are clean. In all honesty, I half expected the lab techs to be waiting outside the door for me with a mop, a bucket and some dirty looks. Instead, Nurse Hairy Arms puts me in another wheelchair, and an orderly rolls me back to my room. You know what is waiting for me when I get there? Milk of Magnesia.
