Discombobulated
About three years ago, my colon was extracted from my body due to a case of Ulcerative Colitis that had progressed so quickly, there was no arguing whether or not my colon was worth saving. I had to reckon, for the first time, with a changed body.
It went like this: I was heavily sedated, smelly, and also poorly shaved in every place except my face. Surgeons may have steady hands, but they are not good barbers.
I was hooked up to an IV and I needed to pee, which was awkward, having to move from one room to the other with tubes stabbed into your arm. I had been bedridden for longer than I thought, so getting out of the hospital bed was laborious. Crunching my chest forward, turning my legs to the edge of the mattress, and resting my feet on the cool, tiled floor was hard. Standing up made me sweat.
I put my weight forward, leaning on the IV stand for support. When I gained my balance, I felt the unsure rush of blood hit my head like static on a TV screen, then I shuffled over to the bathroom not five feet from the bed. By the time I was at the door, I was panting, dizzy, and hunched.
I let the gown I was wearing fall from my body.
What I saw in the bathroom mirror shocked me:
Not only did I look like shit, but my arms were skeletal and my eyes were sunk into my skull. My chest was sucked into my ribs, my nipples the only thing distinguishing my pecs. I remember, before the procedure, the doctor said I was a hundred and ten pounds, a whole fifteen pounds smaller than I was in middle school. Now, I weighed a whole colon less.
My stomach, on the other hand, had alarmingly swelled to twice its usual size. It looked as if the surgeon had lodged a circular trash can lid into the cavity where my large intestine previously was. My sleek gut was now a paunch hanging strangely over my legs, my abdomen completely distorted. Then there was the colostomy bag tacked onto my body, too. My whole physiognomy was distorted. It was like looking in a funhouse mirror, only I was at a hospital in Baton Rouge.
A day later, my belly shrank back to its regular shape.
I was fragile after the surgery, both physically and mentally, and seeing myself distorted and rearranged like a scarecrow that had just been stuffed, was… I’m at a loss for words. Freaky? Sobering? Devastating? Awe inspiring? After all, this is what modern medicine can do: open you up and glue you shut, more or less the same, but totally different: swollen stomach, four large scars across the midsection, and needles coming out of your arm connected to tubes shooting something medical into the veins. The long and short of it is that I was panicked looking at myself that day. I had never seen myself like that before.
I had always been healthy and slender. Even at my heaviest, back in 2018, when I was brushing up against two-hundred pounds, I still looked slim.
I recognize this is a certain kind of privilege. I never had to work for the body I have (had). There was (is) not really a mold to fit into, either, as a boy growing up in my southern American culture. Not in the same way that other bodies are expected to, anyway. The only comments anyone made about the way I looked were about how small I was or how many veins you could see in my arms.
Once, when I complained about being one-eighty in front of my girlfriend, Halee, she sucked her teeth and said, “Shut the fuck up. That’s my dream weight.”
So when I saw my stomach the night after the surgery, I felt like the evil queen in Snow White when the Magic Mirror informs her she is no longer the “fairest of them all.” I felt like something had been taken from me that I had never lost before.
Overnight I went from being in denial about my withering state, the blood that was constantly pouring out of my rectum, how something as simple as walking would take a toll on my whole body, to staring head on at the repercussions of what an untreated autoimmune disease can look like: a sewn up belly that did not look like the one I came there with.
Even as I sit here and type this, the only feeling I can remember was a sinking shock at seeing my stomach and not recognizing it as my stomach, the shape of my belly not automatically clicking as my belly, even though the skin, the mole, the texture of the hair growing out of that mole, was all mine.
And this, too, is a privilege of some twisted sort: the privilege of seeing first hand a transformation, however necessary, befall my dermis and gut. That I live in a place where I have access to a facility (for a very steep price) that can fix me up, but also the experience in and of itself. I don’t consider myself lucky by any stretch of the imagination, but I, through a series of fortunes (bad and good), was placed in this situation, seeing something happen to me that I thought could only happen in a horror movie. My body literally, instantly, before my very eyes changed.
In some way, seeing myself in that mirror was like having sex for the first time. That obviously says something about the first time I had sex, but I mean to say: if you’ve never experienced something like that, you can only imagine what it’s like. You can probably come very close to really understanding it, too.
It’s not like putting on a costume or changing your clothes or applying enough makeup to one spot to cover up the imperfection that you were unhappy with before. I liked the way I looked, and then, suddenly, I woke up and looked different than I had when I went to sleep, kind of like that moment when you see the Joker for the first time in the 1989 Batman movie with Michael Keaton, and he’s pale and laughing, only I wasn’t laughing.
And not only did I suddenly look different, but the reason for the difference made coping with my new body even more difficult for me to start doing.
Because if it wasn’t for this surgery, I might have died. I had come very close to dying, and there’s no reason for me to believe that, if I didn’t have this surgery, I would have been saved any other way. My body had been crusading against itself for a period of less than two months due to Ulcerative Colitis, and it had inflicted so much damage to my colon that, by the time that I finally checked myself into a hospital, all the life saving drugs that would have normally sent me into remission were effectively useless.
I was septic and dying and a hundred and ten pounds and they needed to pull my colon out, otherwise my stay at the hospital would have been greatly extended.
And this is the part that makes it hard: after my surgery, a colorectal surgeon told me that surgeries like these are becoming more uncommon. “This disease,” he said, “is highly treatable with all this [expensive] medicine we have available now. This is because Colitis is actually becoming more common, affecting almost a million Americans to date, and they can catch the symptoms quicker than they used to.”
A guilt arose inside me as he said it. It meant that I had a hand in my own downfall because I waited too long to get help.
I waited for a number of reasons. I didn’t have insurance. I was in Louisiana and didn’t know the medical system here as well as I did in Florida. But also, I was so sure that what I was experiencing wasn’t anything out of the ordinary. I had had a stomach ache before. Seeing blood in my stool wasn’t the norm for me, but it was common enough to where I didn’t think much about it, even when it started appearing almost every day. There’s also a part of me that maybe felt a little invincible, too. Growing up, my Dad never got us health insurance, which was something I remember the pediatricians having heated conversations with him about.
“They’re fine,” he said. “None of these kids will get that sick.”
My grandparents, too, always had this will about them that, even though they caught colds, they needed knee surgeries, or were showing real signs that they were aging, they always said they were fine. They said God would take care of them.
So maybe I was also leaving it up to God,too: waiting for God to cure me instead of the doctor, thinking: God wouldn’t let anything happen to me, right?
Whatever the reason, from the moment my stomach started hurting to the time I checked myself into the hospital the first time (they pulled my colon out the second time) I had only, very reluctantly, gone to see the doctor twice. Because I didn’t have insurance, I went to the student health center at LSU. Each time I dragged my ass in there, the physicians blamed my stomach issue on other things: drinking because I was young and I was attending known party school, LSU; a potential sexual mishap, they assumed, because I disclosed I had sex with men in the recent past and I occasionally bottomed; some random snail vomit that I definitely did not come in contact with; and only once did a doctor mention that this could be an autoimmune disease called Ulcerative Colitis (which it absolutely was), and even then they couldn’t be too sure without a colonoscopy, a procedure that would be very expensive.
Looking back now I realize I should have just taken on the debt. I should have listened to everyone who said I needed to get checked out because, ultimately, debt was where I was headed.
Instead, I waited until I was almost dead and then we were here:
Me staring at a body I didn’t recognize, hairless from the chin down, naked, underweight, hungry, and strapped in with a semi plastic bag to cover my intestine that will hang out of my side indefinitely.
But look: you have to count your blessings.
My belly shrank back, I was alive, I could eat again (I hadn’t eaten anything, really, for over a month), and, slowly, I was regaining my sense of humor.
Five days after the surgery, I took a weed gummy, yelled at my entire family out for no other reason than to feel how nice it is to be mean to be people when you finally have some energy to be an ass, and I devoured an entire box of New York style pizza from this really fancy place by the Publix in Lake Nona.
For those first two weeks after the surgery, I was living.
The harder part for me was down the road: dealing with the bag and what lies under it.
The first time I saw the inch and a half bit of pink intestine puckered out from the side of my stomach, an ostomy nurse, who reminded me of my grandmother, was teaching me how to size the new bag to fit my stoma.
My hands were shaking as I tried to cut a little hole through the back of the bag where the adhesive would stick, so the bag would be snug around my new appendage (is that what you call this?). This is important because the more skin that’s exposed underneath the bag, the more potential there is for my skin to ulcerate from the shit leaking out of the stoma. These things don’t stick forever, and the longer they stay on, the more potential there is for the seal to break completely. And then you’re left with something like a bog of shit dripping into the elastic in your pants.
“Lord,” the ostomy nurse chastised, watching me manuver the medical scissors in my unsteady hands. “Hold still, son, you’re going to cut the bag.”
As she said it, the bottom part of the scissors (the part I was supposed to be pointing away from the plastic outside of the bag) cut through. The nurse sighed.
“I told ‘em to stop with all of those steroids they’re giving you,” she said, which is the first I was hearing of them giving me any steroids at all. “Let’s try again,” she resigned, pulling out another bag from her kit, introducing me to a new life of permanent wound care.
Essentially, what the surgeon did to my body was remove most of my colon (he left eight inches attached to my rectum) and create an ileostomy from my small intestine. He then pulled that piece of small intestine through a quarter sized hole in my stomach so that it sticks out far enough to let the excrement fall from my body. As you can imagine, this is all very unnatural.
As for the ileostomy itself, it’s always wet, it bleeds, it does this little wiggle thing when the rest of my small intestine is processing food, and it never heals. It’s stuck in the same place. I don’t have any fear that it will go back inside me (they stitched something together), but the skin around it lives in a state of permanent woundedness.
Sometimes it’s dry. A purple scar, which always threatens to split open, rings itself around my ileostomy (also called a stoma), and it can be simple to take care of. Other times, though, when the adhesive of my bag has either come off and that purple scar is dripping blood, or if the liquid of my shit has leaked far enough down between my skin and the sticky part of my bag, a whole area can be completely ulcerated and bleeding, which makes the bag change a little tricky.
But, as the ostomy nurse tells me, there are things you can do to help prevent this.
I have a kit.
I have my little medical scissors. I use them to size the bag when I need to, though lately I’ve been buying bags that already have the perfect hole that fits my stoma exactly right. They’re my boyfriend bags.
I have two bottles of stoma powder that I am supposed to use if the ileostomy is particularly “weepy.” I just have to wipe it off before sticking the new bag on. New bags won’t stick to the powder. I do not know what the powder is made of. It doesn’t say on the bottle.
I have my protective rings. These are little plastic circles with a hole in the middle that you mold and rip apart and stick to your skin before you put the new bag on. Buying them really has made the world of difference when it comes to ulcerated flesh and blood. I only buy my rings from a company called Hollister, though. The other company that makes ostomy supplies, Coloplast, has rings that are too thin and don’t stick as well.
When it comes to ostomy supplies, finding the right products is like trying to find your glass slipper. There is one that will fit, and when it does, you feel like you’re cheating when you buy others. The others are never as good.
I don’t like the see-through bags. I don’t like watching my stoma defecate. The bags I have are plenty discreet. I just tuck them in my shorts and buy longer shirts. Sometimes I get a little bump from the bag if I’m gassy. The bag will inflate with farts, but all I have to do is go to the bathroom to relieve it.
Naked, though, there’s really no way this thing could ever be discreet. Even if I bought the bag with no opening, it is a plastic bag hanging off my hip. There’s just no ignoring that.
And that’s what I struggled with for the first year of having a bag. As I healed, every time I undressed, I had to stare at the bag. I had to stare at my body, which I thought a lot of, and see it with this medical device hanging down from it. And every time I looked at it, a wave of anxiety flushed over me. I hated seeing it, dealing with it, changing it and seeing what my body actually looked like underneath it, deformed by the stoma sticking out of it.
Sex was difficult to get my mind around at first. Thoughts of the flaps opening up and unloading all over our bodies was embarrassing to say the least. And then the sheet changes and apologies. It’s never happened, of course. It’s just something that could happen, and it makes me a little nervous.
Having an ostomy bag slung on my hip felt like cosmic punishment. Like God was actually punishing me for something. For what? I don’t know. But in not knowing, I reflected on everything God might have considered a sin: sex with men, smoking weed, sex with women, lying to my parents, random sex, drinking, acid, molly, shrooms. And I guess, as a sinner in the eyes of the Bible, these are all very valid issues. Sometimes I think: were those people at the LSU Health Center actually right, trying to solve the deeper, moral issue behind why my stomach was hurting?
I mean, obviously not, right? This is something that happens to people all of a sudden, more and more frequently, according to the doctor. I didn’t go to the hospital immediately because I didn’t know what was happening to me and I didn’t have insurance. I thought I was experiencing a killer stomach ache. Now I’m dealing with all this: the supplies, doctor’s appointments, special diets, hard talks, and my disemboweled body. That’s my life now and what I did before they pulled my colon out had nothing to do with it. Perfectly pious, healthy people can have Ulcerative Colitis.
And I believe that, even if, in my weaker moments, after a bad doctor visit or a momentary instance of pain that takes me back to that first night the second time I entered the hospital, when I was certain I would die from the blood loss, my mind starts to trail back to those thoughts of punishment. But this disease is not due to the consequences of my actions.
This is just my life. Whether God allowed this or not, sometimes things happen and you’re faced with a shitty situation. I didn’t ask to deal with it, but now I have to. I just don’t want to die.
And now I’m here with a bag and a broken, somewhat restructured ego. I don’t always mind the way I look, now. Sometimes I even like it.
My now curving belly. The long scar just above my crotch. The bag, I guess, too. The little holes where a robot sliced me open and took my organ. My friend, Sunny, said they look like gunshot wounds. That’s pretty badass, right?
You have to count your blessings: everywhere I go, I never have to sit down to shit if I don’t want to anymore. I can just open the bag and let it all fall in. No more putting paper down on the toilet seat for me. And I need very little toilet paper to clean up afterwards, too.
So look at me: I’m saving the goddamn trees.
about the author
Parker Logan is from Orlando, Florida and living in Baton Rouge, Louisiana. His work has appeared in Split Lip Magazine, Gulf Coast, Pleiades, and elsewhere. He works as a young adult library technician at the East Baton Rouge Public Library. You can find more of his work at parkerpoetry.org.
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