Caitlin Bensel

Here's what happened when our magazine's food editor suddenly found that all his favorite things were off limits—and how he learned to have fun anyway.

Tim Cebula
November 05, 2018

I'm a professional eater. For almost 20 years now, my formal titles have included freelance food writer, restaurant sous chef, and, currently, senior food editor—but they all come down to eating. My input determines my output: eat and describe, eat and replicate, eat and improve. I’ve taste-tested thousands of Cooking Light recipes. I’ve flown from city to city evaluating restaurants, crosshatching the country like grill marks, sampling two lunches and two or even three dinners a day to make the trips as efficient as possible. I’ve judged chili cook-offs, pie contests, and cheese awards (one with so many entrants it had me tasting cheese for eight hours straight). I did all this while living with ulcerative colitis, a nasty autoimmune disease that ravaged my large intestine several times a year. When my mouth was full—and my colitis was in remission—two things were certain: I had work to do, and I was very, very happy.

Then about two years ago, the unthinkable happened: I became terrified of eating. It first hit me while I was home recovering from a total colectomy that removed my 6-foot-long colon in its entirety. I was propped up on my study sofa, double-fisting blue raspberry Pedialyte and vanilla Ensure nutrition shakes while tethered to IV meds hanging on a drip stand. The six-hour IV kept me stuck in place, so I fixated on mise en place: strategically organizing all my earthly needs within reach. I arranged my eight pill bottles on the coffee table according to dosing schedule with the daily regimen laid out in front of each vial so I wouldn’t lose track in an opioid haze. To the left of the table were several boxes of IV supplies—drip bags, tubing, rubber gloves, syringes, alcohol wipes—and other boxes with ileostomy bags and all the gauze, tape, and paste I needed to change my bag every three days. To the right stood a dwindling supply of Pedialyte and Ensure bottles. My trash can spilled over with the empties, like wreckage from a depraved hypochondria bender.

I called my mom, who was 1,000 miles away in Massachusetts, in an assisted living memory care unit I’d settled her into just two days before my surgery. She seemed lucid over the phone, so I rehashed my medical ordeal.

Colon removal was a last resort, but my body wouldn’t respond anymore to colitis medication, and over 25 years I’d tried them all: sulfa drugs, steroids, biologics, immunosuppressants. If the colectomy had gone well, I told her, I would have been sprung from the hospital in five or six days. But it hadn’t gone well. I needed corrective surgery two days later, then stayed in the hospital for a month waiting for my temporary ileostomy (a raw nub of small intestine sticking out of my stomach, covered by a plastic waste bag) to work properly. Soon after my release, I returned twice for emergencies. The first was for an undigested piece of beef that caused a wickedly painful intestinal obstruction and put me in the hospital for three days—no food or liquid by mouth allowed—before it passed.

The second was even more exciting. I’m a lifelong water guzzler, draining more than a gallon a day. It’s not a health-minded obsession; I’m just a thirsty guy. Clearly I’d never come close to dehydration before. But my new ileostomy erupted volcanically around the clock, and without a colon to absorb water, I dried out in a hurry. One night, my ribcage suddenly felt like it was squeezing shut, and I fought for deep breaths. My hands seized and clenched involuntarily. I headed to the fridge for more water but swerved like a drunk, bumping into doorways and chairs. I don’t recall how my wife, Julie, got me off the floor and into the car, but within the hour I was in the ICU being treated for kidney failure.

And the adventure was just starting. Because I’d refused a permanent ileostomy bag, I needed two more surgeries to reroute my plumbing with six months of recovery after each.

I told my mom I had to be careful in the meantime about what and how I ate. I heard doubt in my voice, and I realized just then how frightened I’d become of obstructions from food I couldn’t digest anymore (like red meat) or from not chewing each small bite dozens of times into a uniformly smooth paste. Food—my career, my hobby, and my passion—now felt like a mortal threat. The doctor said the sooner my system adjusted to solid food, the quicker I’d heal. But solids weren’t worth the worry (or pain) anymore. So I resolved to avoid any food that required my teeth. My work-around—a steady flow of Pedialyte for hydration and Ensure for sustenance—was maybe a little extreme. And it definitely would prolong the healing process. But I wouldn’t have obstructions, I’d keep hydrated, and I’d stay out of the damn hospital.

“Sweet mother of the Lord, kid, that sounds awful. Just awful,” Mom sighed. “I wish there were something I could do.” Now I felt petty, complaining to a dying dementia patient about my lackluster menu. It wasn’t so bad, I told her. I ate some smooth food, too. Lunch was a cup of plain Greek yogurt, for instance, and dinner would be 3 tablespoons of creamy peanut butter. I also kept sugar-free chocolate pudding cups on hand for special occasions.

“That’s good, my dear,” Mom said with a chuckle. “And in time you’ll see the humor in all this.” You might wonder if dementia made her laugh about deeply unfunny things. But no, it’s just that our family humor runs Addams-dark at times like these.

The actual point of “all this,” though, was a transformation so thrilling I didn’t dare mention it to my mother or anyone else for fear of jinxing it: No colon meant no colitis. And so I figured in about a year, fully healed from the third surgery, I would be able to eat just about anything I wanted for the first time ever as an adult.

“I hope you’re taking lots of notes,” Mom added, practical advice she offered throughout my writing life. “This’ll make a good story someday.”

She gave the same advice when I was first diagnosed with ulcerative colitis in 1993. Doctors and patients alike told me to be thankful it wasn’t Crohn’s, a more severe inflammatory bowel disease that can attack your entire digestive system from the mouth on down. Indeed, colitis was unpleasant enough: stabbing cramps that had me doubled over; more than 20 urgent bathroom trips a day (and all night); copious bleeding and anemia; nausea and vomiting; and weight loss too sudden and drastic to enjoy.

Colitis limited my diet somewhat. I avoided nuts, seeds, and popcorn (foods I came to think of as “sharp”), very spicy dishes, and raw fibrous veggies like broccoli and celery. I learned my boundaries the hard way and paid dearly for missteps. But I could handle most food pretty well, at least in small amounts, so I never felt deprived. And, hey, it wasn’t Crohn’s.

Right after my colectomy, I pared down to about five foods: peanut butter, yogurt, pudding, Pedialyte, and Ensure. Or three, depending on how you define “food.” But I slowly expanded my diet that spring, adding one soft item a week so I could identify the culprit in case of a problem. I tolerated them all: boiled peeled potatoes, overcooked carrots, overripe bananas, buttered semolina pasta, and white rice. I took the rice a step further and fixed a sentimental favorite from my childhood, when Mom used to heat up leftover white rice from Chinese takeout, mix in margarine and sour cream, and shake on some Parmesan cheese from a green can. Without irony or shame, she called it “risotto.” My version used butter and freshly grated Parmigiano-Reggiano, but it soothed all the same.

Emboldened, I put my teeth back to work and tried meat: poached chicken breast (browned meat is harder to chew into pabulum) and canned tuna became my go-to proteins, touched up with a slick of good olive oil and a squeeze of lemon. Honey Nut Cheerios (whole grains! crunchy!) with almond milk were dessert.

Back at work, I didn’t taste-test anymore, so I homed in on cooking methods. For me, cooking is about creative joy and magical alchemy, quite distinct from the sensuous, passive pleasure of eating. Even though I couldn’t eat foods I once loved, I could still dream up better ways to prepare them.

Like popcorn. I’ve long prided myself on making stovetop popcorn without a single burned or unpopped kernel. All modesty aside, I’m incredibly good at this. It’s my superpower. But I started to think a little finesse with the steam could make it even better. I made late-night batches for Julie so I could practice a new method: I shook the pan on the burner like always, but I cracked the lid every now and then so a little steam escaped. That way, the drier air inside the pot made the popcorn more airy and crisp.

Then a fever dream about porchetta—lusciously fatty roasted pork smeared with aromatics—led me to develop a leaner take for last December’s Cooking Light cover recipe: prosciutto and broccoli rabe rolled up in a butterflied pork loin. While bordering on obsession, my tight focus on technique kept me from stoma-gazing and stressing out about the next two procedures.

The second surgery went smoothly. My doctor said I could go home within a week. I was glad to have some good news for my mother, though I never relayed it. My hospital room phone rang just before dawn the morning after the operation, loud and shrill and insistent. It was the nursing home. Mom had died. They had questions about what funeral home she should be delivered to and who would collect her belongings. I had a foggy head full of Dilaudid and no answers.

I spent the next week back home on the sofa. My father died when I was 15, and I have no siblings, so Mom’s affairs were my responsibility; the to-do list seemed impossibly long. Days bled together without distinction. Strained from grief and fuzzy from painkillers, I made and took phone call after phone call from family, lawyers, bankers, and government clerks. One of the few times I roamed as far as the front door was to let in a repairman. He didn’t know me but still seemed to look at me with deep concern. It’s possible I wasn’t looking my absolute best.

Julie and I held a memorial service and reception back home in Massachusetts. At the reception, while I sipped water, a friend suggested I make a list of everything I would eat when I was all better, something I could slap on the fridge door to inspire me toward good health. My list ran to about 20 dishes. They were fibrous (raw broccoli with vinaigrette, any kind of raw fruit at all), spicy (Szechuan mapo tofu, Julie’s chipotle pork tamales), sharp (pumpkin seeds, peanuts), sugary or lactose-loaded (hot fudge sundaes, creamy burrata), or had chewy protein (steamer clams, grilled rib eye steak, burgers). It was fun to compile, but on the fridge the list seemed more like a taunt than motivation.

What bothered me more, though, was that the dishes didn’t tantalize me. My fear of digestive emergencies, ER trips, and surgeries had killed my appetite; I didn’t crave that food, or any food, anymore. I actually had this thought: If I never have another cheeseburger, it’s fine. And I meant it. If I looked in the mirror, would I even recognize this monster?

The third and last surgery, almost exactly a year after the first, was a structural success. I was home after five days with all my pipes now completely internal, sewn and stapled into a self-sufficient digestive tract. I figured once I resumed a full diet, my food fantasy life would come blazing back in glorious Technicolor. To celebrate, Julie and I uncorked a nice Bordeaux that, the very next day, seemed to have shredded my guts.

Cramps rolled and heaved in waves. Then came fever, bleeding, and double-digit bathroom trips. No more wine or alcohol of any kind, I swore to God and anyone who’d listen. But though it was an accelerant, it turns out the wine didn’t cause the fire. After running me through a battery of lab tests and an investigative scope procedure, my doctor told me what did.

“You have Crohn’s,” he said.

I’ll admit I did not see that coming. But I saw the humor immediately. Touché, universe.

After a brief but thorough emotional breakdown, I came to accept the fact that these things happen. It’s rare, but a person can have the colectomy and ensuing reconstructive surgeries and then develop Crohn’s afterward as a complication. Or I may have had Crohn’s all along, misdiagnosed as colitis, which would just be too ironically pat: The reconstruction I had is contraindicated for Crohn’s patients because it’s useless against the disease. Regardless, now I had to learn what Crohn’s would do to me and how to adjust my diet to stave it off.

In the inflammatory bowel disease class, Crohn’s is the overachieving valedictorian. Not content to destroy just your gut, it also excels at what doctors call “extraintestinal symptoms.” I now have mouth ulcers that often make eating or even speaking painful, and throbbing arthritic inflammation in my hands sometimes keeps me from typing.

The lineup of offending foods for Crohn’s patients includes the usual suspects for inflammation or gas: alcohol, fatty or fried foods, fiber, dairy, caffeine, chocolate, carbonation, nightshades like tomato, and so on. And as with all diets, what works for one person might not work for others.

After months of trial, error, and two more unexpected surgeries to remove the most troublesome few centimeters of my lower tract (which they call the “rectal cuff,” a dashing name that made the procedures seem more tolerable, like bespoke tailoring), I arrived at my current plant-based diet. It’s much higher in fiber than I once thought I could handle but seems to keep my inflammation in check. Instead of three meals, I eat six or seven small portions throughout the day. Breakfast is low-sugar cereal with almond milk, or steel-cut oatmeal, maybe with a banana if I’m hungry enough. The rest of the day I eat fruit and cooked veggies: peeled apples, oranges, avocados, broccoli, and beets. Protein comes from oil-rich fish—salmon, canned sardines and mackerel—as well as trusty peanut butter and soy in the I-can’t-believe-it’s-soy form of Boca Chik’n Patties. Whole grains and legumes round out the mix: quinoa, farro, lentil pasta, hummus. No alcohol, dairy, meat, or food with more than a few grams of added sugar. I’ve been on this regimen for just about a month as of this writing. It’s way too soon to assign blame or credit to any particular food, but I’ve seen my symptoms abate.

Heavy doses of curcumin (the active component of turmeric) and weapons-grade prescription probiotics also seem to help. Per dose, the refrigerated probiotic powder delivers nearly 4 trillion microbes from eight different strains, which is roughly 1,000 times more than the typical over-the-counter probiotic. It’s a shock-and-awe bacterial invasion, decimating bad strains so that healthy ones can happily occupy my gut for years to come.

I cautiously try new foods now and then to see if I can tolerate them, but my diet will always be pretty limited. I’m truly done eating cheeseburgers, and I’m amazed to say it’s truly fine—I’ve had more than my share of them in this life anyway. I savor what I eat now. I chew attentively and appreciate flavor nuance and texture, like the verdant juiciness, faint sweetness, and frankfurter-like snap of a steamed broccoli stalk. I fall in love again with simple foods, single ingredients. After a year without citrus, my first bite of a clementine segment last winter rolled my eyes back in my head as the sweet juice triggered an endorphin rush.

Good has come from all this, and it’s still paying dividends. Julie told me a delightful story recently about an acquaintance who approached her grimly to offer condolences: “I heard your husband died. I’m so sorry for your loss.” As soon as Julie stopped laughing—she’s perfect for my family, really—she brought her up to speed. The poor woman explained that the repairman who came to my house after the second surgery had apparently given her bad intel.

I thought back to how I must have looked when I answered the door to let him in. Painkiller-glazed, sunken eyes; salt-and-pepper stubble on gaunt cheeks; and a stained bathrobe draping a skeletal frame—I’ve made better first impressions. I was also clutching my IV drip stand and holding the gravity-fed gear too low, so the line backed up and filled with blood. Can’t fault him for assuming I was about to be eighty-sixed from life’s grand buffet. Hilarious, yes, but also exhilarating to dodge a bullet, even an apocryphal one.

Now here I am, not dead at all, planning the “turchetta”— porchetta-style turkey breast—I’ll cook for Julie on Thanksgiving. Will I sneak a bite or two of it, or stick to my usual stuff? Will it be wistful—Thanksgiving without gravy and sausage-studded stuffing—or celebratory, a new menu for a new me? Either way, I’ll be taking good notes.

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