Tag: Crohn’s Disease

Food for Thought

abandoned

I was told when I went to college I’d immediately put on fifteen pounds. I was told my metabolism would fall apart and my young, thin body would slowly give rise to the misshapen horrors of adulthood. And I was told, in no uncertain terms, that I’d meet a white-haired man under a blood moon who would trade rose-tinted memories for dark, best-forgotten secrets.

In short, my friends were totally wrong about the first two. That fortune teller, however, is currently batting 1.000.

But this isn’t a story about the time I wandered into that abandoned amusement park and found an old crone who beckoned me to a cracked, murky crystal ball. I mean, I’d be lying if I said that isn’t a way better story. It’s just not the one I’m telling right now.

In hindsight, that lead-in kind of makes the eventual story about my college eating habits sound pretty underwhelming. But, well…here we are.

The problem began around the age of 13. After spending most of my adolescence as a wad of pancake batter, my growth spurt hit me like a freight train. From there on out I was seeing an annual 4-inch growth that sent me from “just above average” tall all the way to “can you get me that box on that high shelf? no, the high high shelf” tall.

If you’re having trouble picturing it, just imagine what happened to Tom Hanks in “Big.” Just, you know, without that “sex with minors” thing.

Coming into college just south of six and a half feet and 162 pounds, I was probably the last person who would worry about “the freshman fifteen.” In fact, I honestly didn’t have an alternate strategy to put on pounds if I didn’t stress-eat my way to a healthier figure freshman year. Keep in mind that I was only 17 and hadn’t officially stopped growing by that point. At the rate I was going, I worried my waistline would just blink out of existence somewhere around the age of 24.

(Making me just seven pounds too heavy to be a runway model. Hiyo!)

I won’t keep you in suspense. It didn’t go well. In fact, due to the fact that I handle stress in exactly the opposite way as most people, I left my first semester down eight pounds from where I started.

“Well,” you might ask, “why didn’t you just try eating more?”

First off, stellar question. Thank you for that deep, insightful solution to my weight issue. It’s about on par with asking people with depression why they don’t just try being happier, or people with bipolar disorder to try being happier, then less, then more, etc. I assure you, perhaps not surprisingly, that it was the very first thing I tried when I saw I was shedding pounds.

The answer to that question is fairly simple, though. I couldn’t. And when I say I couldn’t eat more, I don’t mean I had a tiny bird stomach or something. The dining halls were set up as all-you-could-eat buffets three times a day and located within a hundred steps of my door.¬† I literally mean I couldn’t have possibly eaten more than I already was.

And yet, like the victim of a horrible gypsy curse, I continued to waste away no matter how much I ate. I mean, in all fairness, that gypsy had cursed me in the abandoned amusement park. But that was a different curse where….well, like I said. That’s a whole other, far more interesting story.

Anyway…

Probably the strangest thing, though, was seeing so many others pack on more and more pounds as I slowly disappeared up my own digestive tract. My floormates would see me and nod appreciatively at my runner’s physique. “What’s your exercise routine, man? You’re looking good.” They’d then quickly mutter, “No homo,” because it was 2002 and that was a still a necessary addendum to complimenting a guy.

Having no exercise routine, I was never sure what to say. So I’d always come up with something like, “It’s a lot more poutine than routine.”

They’d laugh as though I was making some sort of joke. So I’d laugh with them to avoid making it awkward. And all the while my stomach would slowly slide ever deeper into the growing pocket dimension inside me.

Of course, in hindsight it all made sense. Most of my symptoms were simple enough to explain away if I’d known I had early stage Crohn’s Disease at the time. It might have come in handy for the people (and there were several throughout my years in college) who were openly hostile about my weight loss, as though I was gradually evaporating just to spite them.

“Well,” more than a few people would say, rolling their eyes, “I’m sure I’d be thin as a rail, too, if I ate like a hummingbird like you.”

It was then that I’d put down the entire rotisserie chicken I’d been eating and frown. “This seems like a bad time to explain that hummingbirds actually need to drink a huge amount of nectar compared to their own body weight just to survive each day,” I’d answer sheepishly. Their eyes would narrow, suggesting that it was indeed a bad time to explain that. “I mean, you’re already in way worse shape than me. It’s probably just salting the wound to show how much more I know about birds.”

The exchange would usually conclude with my being tackled to the ground and ferociously pummeled. I’d blurt out apologies between blows – usually saying that all my talk of “salting” was probably just making them hungry.

Then again, seeing how people treated me even after the diagnosis, I doubt it would have mattered much. “I wish I had a disease that let me eat whatever I wanted and never gain a pound,” more recent hypothetical people would say. The conversations changed, but the eye rolls stayed the same.

I bring this up as a way to explain that, in its way, the story of my college years was also the story of my tumultuous relationship with my own broken innards. Even if I wouldn’t know about it for many years until finally, under a blood red sky, I entered the burned-out remains of what had once been a hospital and met a man with hair as white as the driven snow.

But that, too, is another far more interesting story  for another day.

I mean, if there’s time. There’s a lot of other stuff to cover first before we cover my odd habit of wandering into abandoned carnivals, warehouses, mines, insane asylums and hospitals.

So…you know, we’ll see.

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Story Time – Barium? Damn Near Killed ‘Em!

white-paint

Look. I’m not going to apologize for that amazing title. Just make your peace with it and let’s keep this story moving along.

Ah, yes. But I was speaking of garments not fit for covering all the necessary parts and of waiting rooms that were the last sort where I’d want to be doing any waiting. It must be nice to just move to the next paragraph and the radiologist shows up.

Anyway, the radiologist showed up not long after I’d erected a makeshift couch out of three separate chairs and a pile of hospital gowns. There was no clock there, despite a loud ticking coming from somewhere very close by. If I hadn’t been so bored, that probably should have bothered me more than it did…

I made my way down the hall and onto my backside in another room. Here I was asked a number of questions that probably had more accurate answers in my medical charts – everything from when I was first diagnosed to the extremely long and complicated names for the parts of me the surgeon had taken out. I distinctly remember being asked if I’d had surgery before. I said I had. The radiologist stopped and raised an eyebrow, “It’s important to be accurate with this. You’re sure?”

Pretty sure,” I told him, as though I might rethink a half-month hospital stay and three month recovery period and realize it had been something else entirely. Trust me when I say that once you’ve had invasive surgery, you would never mistake it for anything else.

(Though, to be fair, I know he was just filling out a form – one he certainly didn’t make fifteen questions too long.)

I should clarify the problem here. Those without a long medical history might take it for granted, having only to remember that “one time they had bad strep and almost had their tonsils taken out.” At a certain point, very sick people have had so many things wrong with them that they actually start forgetting some of them. From a mental health standpoint, it’s probably a good thing. From the standpoint of filling out medical forms correctly…not so much.

In any case, pleasantries aside, we moved onto the first images. He had me lie down and alternate between holding my breath and breathing normally in a way that I’ve always found very jarring during imaging tests. I’d be told to breathe in, hold it, breathe normally, hold it and occasionally let out breaths I’d yet to take. Just as I began to wonder if I’d be the first person to pass out during the world’s worst game of “Simon says,” we were finished.

I was sent back to the waiting room. The wall ticked loudly. I waited.

A doctor came to get me because he had to sign off on the preliminary pictures of my insides before we got started. He seemed confused by something. Again, for those who don’t associate with doctors frequently, this generally isn’t a good sign.

“There are…abnormalities,” he said, looking at the images from a second test. The words didn’t help my breathing issues. “Abnormalities” tends to be code for, “There’s something wrong inside you. But the upside is I have no idea what it is.”

“Is that bad?” I asked from the table.

“No. It’s just…hm.” Shockingly, I didn’t find his explanation reassuring.

He held the image negatives up to one set of lights and then the next. Then he looked down at the screen. I wondered why he need physical copies when he could just look at a screen. Hospitals, apparently, hadn’t made good strides towards the “paperless office.”

“Aside from the Crohn’s, is there something…wrong with your intestine, that you know of?” he asked.

“I don’t know, doctor who’s literally using magic to look at them right now,” I said, a bit testily. “You tell me.”

Cocking his head far to one side to look at the screen – the one possible situation where it would have been better to look at the physical copy – he nodded. “Well, I guess we’ll know better once you’ve got the barium down. It’s just that there’s a section of your intestine missing.”

“Is it the terminal ileum?” I asked, dazzling my readers with my medical knowledge. “I had surgery. It’s supposed to be missing. I already know about that.”

“No,” he said, in a comment so ominous he should have taken off his glasses to deliver it. “Another part. About half of the lower intestine, actually.”

That….I didn’t know.” I wasn’t sure of the “hearing bad news with glasses” protocol anyway. And the last thing I wanted to do was make a guess and look foolish. Luckily, I suppose, I wasn’t wearing mine at the time.

I went back to the waiting room. The wall kept ticking. I pondered whether or not the wall and I could switch tasks for a bit. I would tick. And it could wait and maybe be dying. But walls, in addition to being crummy ways to keep out immigrants, are crummy conversationalists, too.

(Oh, snap – politics!)

“Drink this,” a man said, handing me a 20-ounce cup of something. I was finished by the time he reached the door. I made a note to make sure the person handing me strange drinks was a doctor before inhaling it next time, but I was too distracted.

It was only as I was staring at the dregs in the bottom of the Styrofoam cup that I realized the full and unpleasant scope of what I’d just granted an entry visa to my body. Seeing as it would be fairly pointless to ask if you’ve ever drank barium, since you can’t answer me, I’ll just explain it to everyone. First, imagine drinking a cup of white house paint. Actually, that’s pretty much it.

Except, in a head-to-head flavor competition between house paint and barium, I’m not sure barium would even take a podium spot.

“You all right?” the radiologist asked when he returned.

I had at least three problems. Since a stomach full of barium seemed like the least of these and I doubted he knew how to fix the television, I opted to ask about my erstwhile insides. “The doctor seems concerned. Or confused. Either way, that makes me concerned.” I hesitated, before quickly adding, “And confused.” I wasn’t sure where half of my insides could just go if they weren’t in me anymore. It seemed like something I’d want to know.

“You’re fine,” he assured me. “We had to look at the charts from your surgery. Apparently the surgeon rearranged a lot of your insides. They aren’t where they’d normally be.”

“That…actually still sounds pretty bad.”

The radiologist shrugged. “Not as bad as whatever you were thinking, I bet.” It was a good point. And when he clarified that this test was likely to be as excruciatingly routine as a test could be, I felt oddly better. Certainly not good, given the five hours of alternating waiting and imaging ahead of me. (It was done in such a way that I couldn’t even sleep.) But boredom and impending death are fairly distinct flavors of dread.

“All right. So what happens next?” I asked.

“What happens next is that you’ll want to drink that as fast as you can,” he explained, pointing to the cup in my hand. He launched into a vivid explanation of exactly how unpleasant the barium concoction was and why it was nonetheless entirely necessary to choke it down anyway. I listened politely until he finished by setting a hard limit of “absolutely no longer than fifteen minutes.”

“And what happens after I finish it? Because I already did.”

“My God,” he said, not even hiding a grimace behind the mask of medical professionalism doctors usually used to dismiss horrible things they’d seen. “That stuff’s like…white house paint. Only without the flavor.”

I muttered something about stealing his description if I ever turned this into a blog.

“Okay…well…you have a second one to drink, too. You’ll want to go easy on that one. If you drink another one too fast, you’ll empty your entire stomach,” he instructed, shaking his head in awe of my very specific skill in rapidly drinking paint and/or suspensions of alkaline metals. And when he gave me the second cup, he seemed to watch me carefully to make sure I wasn’t some sort of hardcore addict looking for his barium fix.

I told him he didn’t need to worry. My stomach and gag reflex were making a strong case for not drinking the second cup at all. The radiologist’s objections were largely redundant by that point.

“I just needed to be sure. I’ve never seen someone drink one of those down in under ten seconds like that.” He smiled, readying what he probably thought was going to be a joke. “You weren’t in a fraternity, were you?”

“I was, actually.” And, in hindsight, if I could keep down Banker’s Club – a vodka I can only assume was triple distilled before being filtered through someone’s asshole – it made sense that I could keep down something with half the unpleasant aftertaste and none of the burning.

“Is that so?” he said, scribbling something on his chart. I can only assume there wasn’t a question he’d forgotten about fraternal status. “I was in a fraternity myself.” He said the letters. I forgot them. (Sorry.) “I imagine you’ve got some pretty crazy stories to tell from those days, huh?”

The more I thought about it, the more I realized I did. I nodded as the memories came flooding back. “I’ve got a few stories from back in those days,” I said, as the camera began to pan out on the scene. “And from the look of it, I haven’t got much else to do besides talking for the next five hours.” Cue that dreamy piano thing to indicate someone’s about to have a flashback.

“Yeah, well,” the radiologist grunted, abruptly halting the scene transition. He filled out the last of whatever he’d been writing. “I’ve got work to do, so I’ll see you in fifteen minutes.”

“Oh, okay. Right.” I folded my arms as I watched him leave, muttering about how I’d show him and tell the entire story in a blog later. He hadn’t heard me. I was sure, nonetheless, that if he had, he’d have been so burned.

In any case, buckle up. We’re headed back to 2001. And I’m already bad enough at finishing short stories quickly. One that lasts two decades might take awhile.

Story Time – The Long and Long of It

waiting-room

Now, where we when I last wasn’t able to end a story quickly? Right. I remember…

Anyway, when we last left our hero, he was on his way to the hospital. It speaks a lot to my life experience that the first thing I thought when I heard about going to the hospital is that it would be a big waste of my free time. I’m sure most people going to the hospital are afraid of getting bad news. Or being around sick people. I got my bad news a decade ago. I am sick people.

Having a chronic illness before you go to a hospital is a completely unique experience. It allows you to be more pragmatic. I, for example, tend to view it as more like visiting a very racist relative for the holidays. You already know about how it’s going to go without even setting foot inside. You’re just sort of wondering how much of your Saturday it’s going to devour before you get to go home.

Now, I should be clear. Just because I’m not afraid of them doesn’t mean hospitals are fun for me. They probably never will be, unless somewhere around visit 50 they start paying me to go there.

Hospitals are dreary and depressing. And they’re full of sick people. Very often, those people are far sicker than I am – occasionally in very contagious ways but always in very depressing ones.

“Aren’t you one of those sick people?” you ask.

Well, sure. But it’s like seeing someone who went to your high school in a different year that you’ve never spoken to. It’s not a good enough justification for me to want to be around them.

I still remember one of my worst stays in the hospital. I’d been placed in a room with an old man who spent about twenty hours a day moaning. When he died, the nurse asked if I was all right. I said I was fine. I hadn’t even spoken to the man, after all. Honestly, counting reading about Sirius Black, it was probably the second-most-troubling time someone had died right next to me on the other side of a curtain.

She seemed surprised at this, saying that she thought we’d have bonded. “We put the two of you together because you both had Crohn’s Disease and…oh.” Her face reddened. “I’m sorry. I guess I shouldn’t have told you that. It’s…kind of a privacy violation.”

“Privacy is just one of many reasons to maybe not mention a man dying of the same thing I have after two days of agony,” I noted, shuddering at glimpse of my potential future.

In short(ish), while I have considerable empathy for those with chronic illnesses, that doesn’t mean I want to hang out with them.

Worst of all, perhaps, is that hospitals are just mind-numbingly boring. I’ve been in them enough to know there isn’t some secret area where they’re hiding all the fun. It’s pretty much just beeping machines, sick people, waiting rooms and places to buy under-seasoned, overpriced food that (in my opinion) are too close to both the sick people and the beeping to be enjoying a meal.

And that’s roughly when I heard my thirty-minute test was actually a five hour one.

Then they told me to strip naked. That’s not really an important part of the story. But so far as long waits go, naked isn’t my favorite way to spend them.

(A blow softened only slightly when the receptionist clarified that after disrobing, I could put on a garment that only loosely fit the description of the word “gown,” at least based on the Disney princesses I’ve seen.)

“At least there’s a television,” I muttered as I walked into the radiology waiting room and arranged the hand towel I was wearing so that I wouldn’t have to put my bare skin of my backside on the seats there.

I quickly realized that I may have had overly high expectations of the old tube television. It looked to have been built at least two decades ago – specifically, from the parts of other broken televisions. I wasn’t too surprised to find the same episode of static on every channel. And when I found there was no cable hooked up to it, I was even less surprised. Aside from having taken the time to plug it into an electric outlet, the hospital had done everything it could to ensure no entertainment came out of that television.

“The television doesn’t work,” I explained to the receptionist. “There’s no cable even hooked into the back.”

“Oh. It’s got an internal antenna.”

“Really? It wasn’t playing those channels either.”

“No, it wouldn’t. The radiology equipment confuses the signal,” she explained.

“Ah.” I blinked. “Then…why have it there at all?”

She shrugged. “Well, we padlocked it to the table so no one would steal it. But we lost the key. So we just keep it there.”

It wasn’t a very fulfilling answer, not least of all because I couldn’t imagine someone sneaking past half a dozen security guards to steal a television that predated the Nixon administration. And since I had nothing better to do, I pressed on. “Surely you have a maintenance department with a bolt cutter?”

“Yeah,” she said. “But we keep forgetting.”

After waiting a moment to see if she might spring into action and ending up disappointed, she turned back to her computer screen. I want to believe she had something very important to look at there. Peace of mind, however, advised me not to check.

I returned to the waiting room, the hospital’s standards making me a little less sure I wasn’t going to die during a noninvasive routine test than when I’d arrived.

And that, once again, is a good place to leave the story for now. I realize that it’s the second part and I’ve yet to reach the actual test the story is about, but hopefully it’s been a decent ride to get there. I’m going to be blunt here. Reading my writing to see me reach my point quickly is a recipe for disappointment. For me, it’s all about the journey and very rarely the destination. Unless we’re talking “Journey” the music group. Totally different rules in that scenario.

Though, that being said, I do love trilogies. So there’s an above-average chance of the next part being the last one.

Story Time – The Long and the Short of It

insides

Disclaimer: About a decade of having Crohn’s Disease has given me an issue of “terminal oversharing” when it comes to my insides (or the contents therein). When doctors are asking you on a daily basis how often you’re going to the bathroom, how long you’re spending each time and vivid descriptions of anything that comes out of you, you either get over your embarrassment or people start misdiagnosing you.

I realize that this is understandably unpleasant for most people to read about. But I should make clear that my chronic illness is more of a framing device for this story. I don’t plan to get into the messy particulars. I only mention it because otherwise you’d have no clue why your handsome protagonist was in the hospital and why he was so indifferent to what would be a fairly worrisome procedure otherwise.

End Disclaimer.

It’d been about two years and some change since my surgery. The upside of having your intestine removed for Crohn’s Disease is that it’s actually a decent “nuclear option” – very effective but with some unintended consequences. The only trouble is that, like a lingering zombie threat, it can often regrow if even the slightest bit is left. Did I mention we were fighting zombies in that analogy? In hindsight, mentioning that seems sort of important.

My specialist at the time of surgery had been letting me handle my recovery mostly on my own. Probably because he retired. I assume, if stereotypes are to be believed, to somewhere warm with plentiful golf courses.

(Though, since he confided to me in our last office visit that he stayed on an extra three months just to see my treatment through to the end, I can’t help but say he deserves a nice retirement by virtue of being such a decent human being alone.)

His replacement didn’t last long. She was, and I’m trying to be kind here, fixated on my anus. “Do you know what an anal fistula is?” “Did you ever have an anal fistula?” “Have you ever been checked for an anal fistula?” “Do you mind if I check your anus right now?”

“Hello,” I said, reaching out my hand to shake hers. “My name is Matt. What’s yours, person who literally started asking about my anus before she introduced herself?”

Luckily, she turned out to be a doctor, but still.

Thing went predictably downhill from there. She seemed fairly disinterested in the wealth of paperwork available on problems and surgeries I actually did have. She ordered a bevy of tests aimed at finding some mythical anal fistula that never was. I don’t know why she wanted to find that thing so much. Perhaps, like some even more horrible Captain Ahab, this was her brown whale.

Long story short (or at least medium), I requested another doctor.

“Bad news on that,” I was told by my General Practitioner. “The doctor you’re leaving and our other gastroenterologist are sort of…an item. They’re…involved. Romantically. They sort of met here and hit it off…”

“I get it,” I said, stopping him before I heard something I probably wouldn’t want to know about two people who considered gastroenterology a perfect backdrop for romance. “What’s that got to do with anything? They’re doctors, right? Can’t they keep their personal and professional stuff separate?”

“I don’t know. Maybe. No?” At least he was honest. So I got sent to a different practice in a weird part of town. You know, the part where your Main Street goes all the way from North to South Main and suddenly you’re driving on East Main Street.

(To say nothing of my confusion when I turned onto East South Street. What the hell, city planners?)

My new specialist was competent enough – a good mix of action and knowing when inaction was the better option. He told me that doctors tend to just throw Humira at people with Crohn’s Disease nowadays. (I assume he meant metaphorically.) But studies showed it only helped bringing the disease into remission. It wouldn’t do anything to make remission last longer. So, instead, he poisoned me.

Okay. Sorry. Jumping ahead in the story a bit. Let me ease us into that part.

He prescribed a medicine that was effective in keeping my disease at bay. The downside was that not everyone tolerated it well. And those who didn’t, well, they tended not to tolerate it spectacularly.

Still, I gave it a try. And three weeks later, as I projectile vomited the instant I swallowed it for the third night in the row, my pattern recognition made note of it. In short, I tried it one more time, just to be sure. More projectile vomiting.

“Ugh. I’m not doing that again.” I talked to my doctor. He said to try it again. The outcome was more or less as projectile vomit-y as before, though by that point I was at least used to it enough that I tried to mix in some “Exorcist” quotes to make it funnier.

(For the record, I’ve now been poisoned, stabbed, hung and disemboweled. I’m just three steps away from completing the “Vigo the Carpathian Challenge” from “Ghostbusters II.”)

From there, my specialist nodded his head sagely and said, “Well, why don’t we do some tests? Have you ever drank barium?” I had – oftentimes even for medical reasons. “Good. And how do you feel about undergoing a medical test that is, in some ways, less pleasant than projectile vomiting but has the benefit of taking much, much longer?” he asked. Okay. He didn’t ask that. But he should have.

Alas, this is getting too long and I haven’t even got to the story yet, so that, dear friends, will have to be a tale for another day. Or later today? Tomorrow? Stay tuned.