What It's Actually Like to Live with Crohn's Disease


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What It's Actually Like to Live with Crohn's Disease

I've had chronic pain in the pit of my stomach for about two and a half years. I move around sluggishly, the color drained from my face, always distracted by what's going on in my bowels.

Illustration by Dan Evans.

This article first appeared on VICE UK.

You can tell a lot about someone via their relationship to shit. Salvador Dali was besotted, working skid marks into his paintings and writing that "true love would be to eat one's partner's excrement." The French Renaissance writer Rabelais is said to have used human shit to signify the body's "instinctive right to primal satisfaction." James Joyce was really, really into having sex with women while they farted.


I've had shit on the mind myself recently because, a few months ago, I had to defecate into a plastic basin and tip the sample into a stool container. It wasn't pleasant. Aesthetically, it reminded me of hematite or some kind of advanced skin disease. Still, that was one of the better ones.

The reason I was shitting into a basin is this: I've had chronic pain in the pit of my stomach for about two and a half years. I move around sluggishly. Color drains from my face, the red that enlivens my skin replaced by a sickly pallor beaded with sweat. Jets of warm shit, then four days of nothing at all.

Each time I went to the doctor about my symptoms I was diagnosed with irritable bowel syndrome, a common complaint that can cause cramps, bloating, diarrhea, and/or constipation. I knew what I was dealing with was worse; I'm no middle-of-the-road IBS sufferer (welcome to the hierarchy of bowel dysfunction).

When Martin Amis went to Mike Szabatura, his dentist, and found out that the "ridge of darkness just above his chin" was a cancerous growth, he wrote, "For months, months, I had felt something new and strange down there: pressure, activity, occupancy…" There was pressure, activity, and possible occupancy in my bowel or intestine. There was a balloon in my anus, and this balloon inflated at inopportune moments, diverting the course of events and inevitably leading me to the toilet bowl. Sex, work, TV, the spreading of cold butter on cold bread—all disrupted by the balloon.


I once had a friend whose depression was characterized by a lament for his routine of eating, shitting, and wiping, on repeat, ad nauseam. He said the inevitability of this cycle was "agony." I was starting to identify.

James Joyce, famous lover of farting women

I finally found a doctor who was willing to explore the possibility of Crohn's disease and refer me to the Department of Gastroenterology and Endoscopy. They inject you, lull you, and violate your interior by inserting a flexible tube down your throat or up your rectum.

Prior to this procedure I had to starve myself for 38 hours. On the way to the hospital I had a faint hallucination. I saw a slurry of feces spill from a spare tire and onto the motorway while listening to "Walk Away Renee" by the Four Tops. Sitting in the waiting room, alongside the other starving patients, the hospital staff had the bright idea of putting The Hairy Bikers' Asian Adventure on the TV.

According to Crohn's and Colitis UK, a nationwide charity established in 1979, Crohn's Disease is a type of inflammatory bowel disease. I first heard of it when Sam Faiers from The Only Way Is Essex was on the 2014 edition of Celebrity Big Brother. She seemed lethargic, withdrawn, undernourished; swamp-green circles blemished the area around her eyes. After being visited by an onsite doctor, she was diagnosed with Crohn's. She spoke to the Daily Express and asserted a willful defiance against a disease that was, basically, a serious case of the shits: "I won't let Crohn's disease beat me," she said, in turn becoming the poster girl for Rubbish Bowels and alerting me to the disease.


Related: 'You Don't Know Shit,' our film about how the human shit industry is worth hundreds of billions of dollars.

In an episode of The Sopranos titled "Funhouse," Tony can't differentiate between depression—an affliction of the mind—and the physical effects of food poisoning. I spend a lot of time occupying this space between mental and physiological malady. My disposition is informed by the severity of the stomach complaint—to the extent that my entire being is reduced to the flesh of the terminal ileum.

I live inside my biology, burrowing deeper into the swelling. On a bad day I wake up (at midnight), explode into the toilet bowl like a geyser of jet-engine fuel, wipe myself, and repeat this pattern throughout the night. I lose blood. I get cold. But, with increasing urgency, I have to leave the comfort of my duvet to make my way downstairs to the frigid harshness of the bathroom tiles.

On the "Information and Support" section of Crohn's and Colitis UK's website, it says: "In both Ulcerative Colitis and Crohn's, parts of the digestive system (the gut), which includes the intestines or 'bowels,' become sore or inflamed. Crohn's can affect any part of the digestive system, from the mouth to the anus."

I have ileum Crohn's—the most common form—which affects the small intestine and the colon. The normal function of the bowel is disrupted because the tissue can swell, thicken or form scar tissue, leading to blockage due to the narrowing of vital passageways. A condition known as malabsorption—"a failure to absorb nutrients from the gastrointestinal tract"—can occur, which leads to fatigue and loss in weight. And ulcers may form in the deepest layers of the bowel wall. I live on a diet of 30mg of Co-Codomol and 3mg of Budesonide capsules, but, because the steroid tablets no longer carry out their function and the pain persists, the hospital are starting me on Adalimumab injections, which helps to reduce swelling and pain by limiting inflammation.

Every day I have to plan with my bowels, not my brain. I have to think about wet-wipe allocation—one pack in the bathroom at home, the bathroom at work, my bag, and my (parents') car—to make sure that I don't further fuck up my Crohn's-y asshole with hemorrhoids. Every day the cycle begins, repeats, and repeats until we're in double figures. And yes, my friend was right: It's agony.

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