Coping with Crohn’s

By Rosemary Mild

Picture the Garden of Eden. Eve has Crohn’s Disease. Hey, there’s an upside to it. She rejects the serpent’s apple because she doesn’t have a knife to peel the skin off.

Back to reality. The waiter hovers over me, poised with his pad, and I’m taking forever. My husband has already ordered. I stare at the menu. Each entrée has five embellishments. Or is it fifty? Oh, here’s a dish. Grilled chicken breast smothered in cashews on a bed of arugula; wild rice laced with pine nuts; and Southwest salsa of corn, bell peppers and black beans. Six ingredients I’m not allowed. The waiter shifts from foot to foot. “Okay,” I concede, “I’ll have the chicken breast. But no nuts, no greens, no salsa. And mashed potatoes.” He writes it all down. “Wait a minute,” I chirp. “Do the mashed potatoes come with skins?”  “Yes, ma’am.”  “Sorry, make it fries.” I really shouldn’t eat fries, but I’m hungry!

You see, I have Crohn’s Disease, and with it comes a list from here to the moon of foods I can’t eat.        

Groucho Marx said he wouldn’t belong to any club that would have him for a member. Wishful thinking for those of us with Crohn’s; we’re members of an undesirable club. Crohn’s doesn’t discriminate; it attacks all ages and encompasses a multitude of symptoms; there’s no one-size-fits-all. If you think I’m exhibiting a flippant attitude, please don’t. It’s my coping mechanism.

My own hellish journey started in February 1995, in Honolulu, Hawaii, where we spend the winters. Over a two-month period I suffered through two bouts of abdominal cramps followed by vomiting. I assumed it was intestinal flu. President’s Day weekend Larry and I booked a flight for a visit to our daughter and family on the Big Island of Hawaii. The night before, we ate a Chinese dinner at a mall food court. At 7:30 that night, violent cramps began. I took Pepto-Bismol. No effect. Two Tylenol. No help. Our flight was at 9 a.m. I was up all night. My belly ballooned out, rock-hard, so distended I looked like I was ready to deliver. I should have postponed our flight a few hours, but I didn’t want to disappoint Larry—a foolish moment of self-sacrifice. In the waiting room of Honolulu’s Inter-Island terminal, I wanted to die. We boarded for the 45-minute flight in a plane smaller than a city bus. Suddenly, I grabbed a barf bag and felt as if my entire stomach had turned inside out. Every one of those twenty passengers must have wished I’d stayed home. So did I.

It had to be the Chinese food, right? Wrong.      

Back home in Maryland, the same symptoms attacked me, with cramps lasting from seven to fifteen hours. I went to a new family physician, an older guy, funneled to me by my own physician, who had retired. I told Dr. H. my symptoms and that they had happened twice. He shrugged. “One of these days we’ll check your gallbladder.”

Huh? That was it? Three months later, I celebrated my birthday with more cramps and vomiting. Back to the doctor. This time I demanded that he do something. He sent me for a gall bladder sonogram. “You have a lot of gas,” the tech said, pointing to the monitor. And I thought Lawrence Welk had just turned on the bubble machine. Oddly, the doctor ignored the report. More weeks stumbled by. More of the same intolerable symptoms. I demanded other tests. Dr. H. again ignored me. Red flags fluttered. Enough already.

I switched primary care physicians to one highly recommended. On my first visit, my new doctor, bless him, immediately referred me to a gastroenterologist. In June 1996, after a colonoscopy, Dr. S. made the diagnosis: Crohn’s Disease. I had never heard of it. She explained that it’s an inflammatory disease of the intestinal tract. She then handed me a color photograph of my gut taken during the procedure. “Wow, a Kodak moment,” I said facetiously to cover my growing anxiety. It showed an obstruction in the small bowel. “See how smooth this area is?” Dr. S pointed out. “It’s supposed to have little hairs on it.”

I told her that, despite the diagnosis, I felt a certain relief to finally put a label on my symptoms—and how furious I was at my previous doctor. She tried to soften my anger. “Crohn’s is notoriously hard to diagnose. You have a moderate case.” She also prescribed the lowest dose of Asacol, two pills with meals, three times a day. Plus two emergency medications. As it turned out, sometimes they worked, often they didn’t. I casually mentioned that I had taken two Advil when one bout of cramps started and it stopped them. Her reaction floored me. “Don’t ever do that again!” At that moment I didn’t have a presence of mind to ask her why not. So at home I did a little research. According to the Mayo Clinic, ibuprofen (and other nonsteroidal anti-inflammatory drugs) can worsen Crohn’s symptoms.

            Crohn’s Online, an Abbott Laboratories website, says little is known about its causes. It’s a chronic inflammatory disease of the digestive or gastrointestinal system—an autoimmune disease, meaning that the body‘s own immune system causes damage. There is no known cure, but it can be managed. Without expert management, it can be life-threatening. Half a million Americans contract Crohn’s, usually between the ages of fifteen and thirty-five. I was sixty-one. It can be inherited and often affects Jews of East European (Ashkenazi) descent.

Suddenly, these fuzzy facts came into focus. I’m Jewish. My four grandparents and mother came from Russia. My mother died in 1957 at the age of forty-eight. She had a rare form of stomach cancer—only twenty-six known cases in the world at the time. She died when I was twenty-one, two months before my Smith College graduation. Shortly after, my eighteen-year-old brother, a college freshman, was diagnosed with another dangerous disease: ulcerative colitis. He’d had a wretched time during Mother’s year-long illness. I was a thousand miles away at school while he was driving her to her chemotherapy appointments. Our father was a psychoanalyst. When he learned of my brother’s diagnosis, he dropped his head in his hands and cried, knowing that it was triggered not only by genes, but by emotional turmoil. I have a feeling he felt overwhelmed with guilt: that, despite his profession, he didn’t or couldn’t help my brother deal with the anguish of watching Mother suffer, especially through the chemo side effects.

Although this background knowledge increased my understanding, none of it consoled me. I had a chronic disease? Jeez Louise. I was a vigorous, healthy woman! I played tennis and swam; I went to Jazzercise. Within six weeks, my confidence in my physical self eroded even further. I developed stiffness in my legs. After sitting in a chair for only a few minutes, I struggled to stand up. Why didn’t I connect the side effect to the medication, Asacol? I guess it’s because I’d never been in a situation like this before. After a few weeks, the stiffness diminished.

I reported all this to Dr. S. and then complained, “I ate a bunch of grapes and got abdominal cramps for two days. What am I doing wrong?”

“It’s not you,” she said, “it’s the disease.” A year later, I discovered she was only half right.

She gave me a list of restrictions. After an attack, eat only “soft foods,” meaning no roughage. My new everyday orders? Not too many fatty foods; or tomato-based products (too acidic); or spicy foods; no nuts, no peppermint, no caffeine. “No caffeine?” I retorted. “Forget it. I’ll be a chronic zombie!” “Well, okay,” she said, “one cup a day.” She also told me to eat six small meals a day. Forget that, I said to myself. I was too busy being retired. I also realized that caffeine restrictions meant no chocolate. Was life even worth living without chocolate? No!

Roadblocks loomed everywhere. We were a thousand miles from home, in Minneapolis, out for dinner with my brother and sister-in-law. We ordered a barbecued chicken pizza. No problem, I thought. After two bites it crossed my mind that this pizza was really rich, with butter floating on top and lovely cheese. Back home two days later, I received a demonic visitor: a violent attack of cramps (lasting seventeen hours) and vomiting, which I attributed to the thick, gooey layer of pizza cheese. I envisioned it rolling itself up into a ball, as if my gut were building a snowman. There it sat, at the entrance to my small intestine, unable to complete its digestive journey.

I reported back to Dr. S. She immediately changed my Asacol dose from six to nine pills a day, three at each meal. You’d think I’d have been prepared for side effects. But I wasn’t. This whole Crohn’s business was still so new to me. Six weeks after beginning the higher dose, I developed tendonitis in my right wrist. I thought maybe it was carpal tunnel syndrome, because I was on the computer writing novels for hours every day. An orthopedist handed me a splint for my wrist and said in two weeks it would be fine. It wasn’t.

Then a new wrinkle began. At night my upper arms got so sore I could hardly pull up the covers. And in the morning my fingers were so stiff I could barely open and close them, as if I had severe arthritis. But I didn’t have any arthritis.

The worst was yet to come: painful bumps on my tongue. Canker sores, my primary doctor said. “They’ll be gone in ten days to two weeks.” No such luck. At my dental checkup, I stuck out my tongue, hoping for a diagnosis. “Hmm,” my dentist said, “it’s probably psychosomatic.” Huh? All in my head? Not likely, but I was in no position to disagree. He handed me a prescription for a mouthwash that contained peroxide. Really bitter stuff, with a metallic taste. No help after two weeks. Eating itself—every bite, whether at home or out—caused my tongue to sting. I became acutely aware of salt and spices, and I discovered that any processed food, whether from a can, a bag or a box, contained seasonings that stung and stung. I thought ice cream would be soothing. But how much can you eat? I could hardly swallow. I lost four pounds.

We were leaving for Hawaii the next day. En route, were stopping in Tucson, Arizona, to spend Thanksgiving with friends. The day before we left, I checked in with Dr. S. for my regular appointment. In desperation, I stuck out my tongue (I was getting good at that). She took one look and grabbed her Physician’s Desk Reference. Hastily flipping pages, she found what she was looking for. “Asacol can cause mouth ulcers,” she announced. “Stop taking it immediately.”

     Thank heaven for her lightning response. Within three days, the tendonitis in my wrist disappeared, and so did the nighttime soreness in my arms and fingers. The mouth ulcers began easing off right away, but the total healing took a month, as Dr. S. predicted. What if I hadn’t seen her that day? I’d have gone off to Arizona and Hawaii continuing to get worse—and how long before I landed in a hospital surrounded by baffled doctors? The prospect made me shudder. 

In Tucson, we celebrated Thanksgiving on our friends’ patio, overlooking a glorious blooming desert: saguaro and teddy bear cholla cactus, all set against purple mountains. But I confined my sightseeing to my plate. I was so hungry I couldn’t stop eating. That night, abdominal cramps—for only a few hours, but I knew why. I’d eaten too much. Too many weeks of deprivation.

In Honolulu I felt like a surfer bobbing up after wipeouts. Just four hours of sleep? I still managed to keep an early morning tennis date or get to Jazzercise. Dr. S. had given me a bit of valuable advice. “When you have cramps, don’t eat solid food.”

But despair overtook me in February 1998. I never knew from day to day, hour to hour, what would cause the next assault. A friend with Crohn’s referred me to Dr. B., her gastroenterologist in Honolulu. “I’m upset,” I told him, my voice quavering. “Why?” he asked. His response startled me. He seemed so calm, so reassuring. I’d sent him copies of my medical records. “Here’s what you do,” he said. “Avoid these foods.” And he rattled off a list that went on and on and on. I scribbled every word down. In one thirty minute-appointment, Dr. B. turned my life around.

Driving back to our apartment with The List on my lap, I recalled two miserable all-night attacks in January, and I had an epiphany. Now I knew what triggered them! We had attended a fabulous hotel buffet and I had eaten what I thought was a healthy, disciplined dinner: Caesar salad piled high with alfalfa sprouts and peas. Every one of those ingredients was on The List. Caesar salad is leafy; the sprouts are stringy; the peas have a shell. What propelled me to Dr. B. as if I’d been shot out of a cannon? Chili two nights in a row. The villain was the kidney beans; they have shells. And the bunch of grapes that had gut-punched me? They have skins. “You can cut up lettuce till the cows come home,” Dr. B. said, “and you still won’t be able to digest it.” Now, for the first time, I had tangible parameters.

At dinner that night, I hesitantly placed a bowl of lima beans on the table. My loving husband, already tuned into The List, came to my rescue. “How would you like to play Tiddledywinks with the lima beans?” I became expert at pinching them out of their wicked little skins.

Picture us on tours abroad. In China, cruising down the Yangtze. On the Nile, docking at Luxor. At the breakfast buffets, our fellow travelers would chat leisurely while scarfing down pastries, ethnic dishes of meats, eggs, noodles and soups. Everyone but me. I ate sparely, picking out the lowest-fat foods. Around 7 a.m., still a little hungry, I would bolt from the table and rush to our cabin bathroom. My gut always dictated my schedule: sitting on the pot two or three times in an hour-and-a-half. We always had to be ready by eight o’clock or so for our morning sightseeing excursion: a walking tour; or aboard a bus, train, boat, jeep, camel or elephant. I had to factor in my routine every morning, whether in Paris, Lisbon, Bangkok, Auckland, Jerusalem or Tokyo. Coping with foreign foods? I worked around my restrictions. What’s a cockamamie dinner compared to viewing Angkor Wat at sunset? Once, in Thailand, my whole meal consisted of rice and dessert. All the rest? Too spicy. But I didn’t care. The meal was served on lacquered trays in delicate flowered porcelain. Such a refined civilization.

In Japan I discovered endamame, soybeans, served in tiny appetizer dishes. I performed my pinching surgery and popped them in my mouth as if they were forbidden ballpark peanuts. Delicious and nutritious. Back in Honolulu, I made an entire lunch out of them. Well! I was rewarded with more than a few protesting rumbles from my belly.

Thus I added a new commandment to my tablet. Thou shalt not OD on soybeans—or any other food. Moderation, lady. After all, people have died from drinking too much water.

In June 2010, my husband’s back surgery required us to take a hiatus from those fabulous, rigorous tours abroad. But frankly, I’m not sorry. I actually fear those tightly scheduled mornings. Fear of Crohn’s is more to the point. On the other hand, some tours cater to folks who need lower-key excursions. We may not see quite as much, but who knows? Maybe next year we’ll be ready for Ireland.     

Early on, I asked a close friend if stress ever triggered her Crohn’s symptoms. “Are you kidding?” she snapped. “Of course!” I silently, smugly promised myself, Not me. After all, I’m a psychoanalyst’s daughter. Hah!

Trumpets blare, please! I’m in remission! I’ve been free of my symptoms since August 1, 2008. Dr. S. doesn’t use the word “remission.” Maybe she doesn’t want me to get overconfident. Actually, I‘m afraid to celebrate too loudly because I might jinx myself. I’m reminded at every meal that I still have Crohn’s. My belly gets full-up in fifteen minutes. Fifteen minutes later I’m hungry again. I haven’t taken any medications in over ten years. Now I only need a colonoscopy every three years. I’m always amazed that the procedure itself is painless and quick; it’s the prep that’s so yucky. One year I spent so many hours on the pot that I completed an entire Sunday New York Times crossword puzzle.

I’m a lucky girl. My physicians actually listen to me. I went back to my primary care physician and told him I had not had canker sores and what the real cause was. He apologized and showed me his notes. He’d put a question mark after “Diagnosis.” I asked Dr. S.: “It’s been sixteen years. Do I still have to avoid nuts?” “Oh, yes!” she warned.

As careful as I try to be, sometimes I get ambushed. My gut lets me know by rumbling dangerously. Maybe too many shortbread cookies. My meals are annoyingly labor-intensive. Often I just don’t feel like peeling an apple or pear. So I don’t; I just skip the fruit—and the nutrition. The grapes I can deal with, if they’re large enough. I slice them open and suck out the meat. But not in public! And forget exotic cooking of vegetables “undressed”—without their skins, shells or stalks. I just chug-a-lug a glass of V-8 every day.

Ironically, low-fat and fat-free do not necessarily mean pain-free. Sometimes a certain delicious low-fat, low-calorie chocolate ice cream doesn’t sit well with me. I figure that fat has to be substituted by something, and that something is chemicals. Whatever they are, my gut warns me to be on guard.      

Friends tell me they admire the way I cope with my food restrictions. “I could never do that,” they say. To me, it’s all a matter of priorities. There isn’t a food in the universe that’s worth abdominal cramps—not even chocolate.

My Cautionary and Taboo Foods

In My Next Life I’ll Get It Right

I was born in the Chinese Year of the Pig. If I had known this when I was still in the womb, I would have postponed my birth. My husband, Larry, tried to console me. “It’s the Year of the Boar. That sounds better.”

Pig, boar, what’s the difference?

In 2013, after 20 years wintering in Honolulu, Hawaii, we waved goodbye to Severna Park, Maryland and moved to Honolulu. I was in our apartment elevator with two elderly Japanese ladies. One looked at my Year of the Dog T-shirt and asked, “Were you born in the Year of the Dog?”

I made a face, wrinkling my nose: “The Year of the Pig.”

“Oh, no,” she said, her eyes widening in disapproval of my negative reaction. “I’m the Year of the Pig too. It’s gooooood, good people.”

I laughed. “Oh, well, if it’s us it must be good.”

She chuckled. “Yes indeed.”

As a Jewish girl born in the Year of the Pig, my final comment is oynk oynk!

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