Coping With Crohn’s Disease, With the Help of Rachael Ray

Health Information Lifestyle


When I was 15, I fell in love with the voice of Rachael Ray. That velvety contralto was the soundtrack of my days in the children’s hospital I hated — with its plaid curtains and kind nurses — but called home.

For weeks I spent my days hopped up on morphine, in and out of consciousness, nestled in a snake hive of drip tubes and wires. I was intent on fighting off this invader without a name, but even more devoted to the tiny television set that was giving me an education on how to beat a meringue into submission or throw a “simple yet stunning” dinner party (even when one of the guests is a vegetarian).

What I remember most was the hunger. I was starving, literally. But I had the Food Network.

Under doctors’ orders, I ate hardly anything — not a drop of ginger ale, a bite of a cracker or even an ice chip. This was my first foray into a kind of forced asceticism, something that my body, ravaged by this yet-to-be-diagnosed disease, would frequently require. Ravenousness was embedded in my bones, a constant pang.

My gut was too inflamed, spastic and maniacal to handle nutrition by mouth, and the team of doctors proclaimed, with the nonchalance of those who could pop down to the cafeteria for a sandwich, that my digestive tract needed “a break” and should “cool down.” Forgoing food by mouth was the way to get this done.

My fate was N.P.O. — nil per os, Latin for “nothing by mouth.” When I had run out of celebrity tabloids to inhale and dutifully completed my homework, I became fluent in medicalese, injecting abbreviations and obscure medical terms into my vocabulary. I learned that this diet — or nondiet, really — was the first step in getting my irate system back to a seemingly elusive homeostasis.

I soon received the decidedly unsexy, unglamorous diagnosis of Crohn’s disease. It’s one of those things chronic, incurable, but can be managed — that can physically and financially debilitate you for long periods of time, in events called flares.

Without food, I became half girl, half robot, with angst coursing through me and machines pumping nutrition into my body intravenously in a process called T.P.N., or total parenteral nutrition. T.P.N. is a common treatment for a severe Crohn’s flare. It bypasses the digestive system, giving your colon the ultimate vacation. How luxurious.

I lost the contours of a fully sane and satiated human, morphing and flattening into pure desire — skin and bones, ribs visible, thighs that no longer touched — and I became obsessed with the idea of preparing food and thoughts of my favorite meals. Roast beef. Buttery potatoes. Burgers so big and dripping with juices that you’d need six napkins. Most bewildering to those around me, I became obsessed with the Food Network.

Instead of food, I devoured clips of Paula Deen inserting pounds of butter into a cake recipe and Sandra Lee concocting something deliciously semi-homemade. Emeril Lagasse’s shrieks of “Bam!” sounded even more authoritative through the fog of opioids. And watching Rachael Ray whip up something “delish” became a lustful experience through those hours of rotting in a hospital bed.

I grew accustomed to the emptiness of days unbroken by the familiar markers of mealtimes and instead became dependent on the intervals of carefully dispensed pain medications, always wanting more. I felt swathed and safe in that chemical cocoon and didn’t realize, until years later, that what I had thought was feeling happy really meant being high.

All the while I was flipping through channels to see the beloved friends who were always there for me: Rachael, Emeril, Sandra, Paula.

The rays of the setting sun would blaze through the hospital windows. Then came the darkness that would allow me to see the TV screen with more clarity as I curled into the warm abyss of a sleeping aid — “the good stuff” that sent me drifting off to a zone of semiconsciousness, free of pain, with dreams of lunches and Coca-Cola and a warm, full belly. The Food Network shows, with their bright colors and erotic displays of shiny spatchcocked chickens, were my proxy for a primal unmet need.

I endured the daily drone of doctors and medical residents who poked and prodded, promising “just a few more days of no food.” This went on for weeks, with starts and stops along the way. The few days when I was allowed the most delectable of gastronomic wonders — chicken broth and lemon water ice — were followed by pains so searing and gruesome, and complications so life-threatening, that I would be forced back to square one.

I became an animal closing in on its prey, except the prey was a vanilla pudding cup and the messenger was some poor nurse named Liz. If I smelled food, I would devolve into a rageful miscreant, screaming at the visitors who had food with them and ordering them out of my room. I resented those who could tend to their most basic needs with such ease.

Psychologists and therapists tried to teach me breathing techniques and other coping mechanisms, which I scoffed at with laughs and eye rolls that only teenage girls know how to give. Even as some of my muscles atrophied, it seemed my middle finger functioned just fine. More than ever, I came to rely on the trusted TV hosts who grilled and baked with such ease. Imagine Ina Garten denying me a meal!

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I try to think of when Food Became Good Again, when eating became a vehicle of pleasure and not pure pain. There’s no perfect data point. That’s the thing with having an illness that goes on and on: “Before” and “after” are irrelevant. Living in a body on fire requires you to tend to it like a garden — carefully and meticulously and, most importantly, every day.

I say I have two jobs, my day job at a newspaper and a second as a secretary of myself and of my body. Skills include a deftness at wading through the health care system, an ability to scream on phones at middle-managing insurance agents and a knack for properly budgeting for “emergencies.” One wrong move could mean a Crohn’s flare or a hefty medical bill.

There came a time, after that initial stay in the hospital, when food became not the enemy, but a sort of benign suitor. After months of feeding tubes and stomach pumping, along with one helicopter “life flight” and surgery, I began to get over being sick. The drugs seemed to be working. The doctor’s visits, though tiresome and often marred by procedural nonsense, were helping.

I was once again able to eat in a “regular” way — small bites of pizza and greasy chicken tenders, crisp apples cloaked in drippy peanut butter, my favorite. The saccharine taste of Diet Coke and the zing of cheap black coffee are daily pleasures. Rachael, Ina and Emeril are still in the picture, but now when I watch them, at home, I can run to the fridge.

Annie Tressler is a corporate communications manager at The New York Times.

https://www.nytimes.com/2023/07/15/style/crohns-disease-food-network.html, GO TO SAUBIO DIGITAL FOR MORE ANSWERS AND INFORMATION ON ANY TOPIC

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