“I was in eleventh grade, and suffering from severe abdominal pain.” So begins the saga that sounds familiar to so many. “My pediatrician suspected appendicitis,” continues Josh,* “and I was hospitalized and scheduled for surgery. But then the surgeon visited me and said, ‘Your appendix is fine, go home.’ We were sent to a GI doctor, and he quickly diagnosed Crohn’s disease. They gave me meds, and within twenty-four hours, the pain was gone. I had hardly eaten during those weeks, and I’d lost a lot of weight. I remember clearly, when I was able to eat, the first thing I asked for was a corned beef sandwich!”

Not Just the Stomach

That corned beef sandwich was twenty years ago, and Josh has been living successfully with Crohn’s disease ever since. Yet he has suffered from psoriasis and aching knees — symptomatic of the inflammatory complications that accompany Crohn’s. Those, and many other accompanying symptoms, such as recurring canker sores, cause Josh to claim: “Crohn’s affects me from top to bottom.”

Josh has taken steroids from time to time to manage flare-ups. He has been on and off medicines, depending on insurance and his symptoms, and he has visited with top doctors who are on the forefront of promising new medical treatment available. Josh’s mother also suffers from Crohn’s, and she almost died from a particularly devastating bout with it. Crohn’s is part of the dinner conversation in his family, a steady visitor who has moved in and almost never leaves. And yet, when you talk to Josh, you don’t get the feeling that Crohn’s is that major a factor in his life. He talks about how lucky he is, how it could be a lot worse, and besides, how does he know that creaky knees aren’t just because he’s getting older?

Dr. Robin Baradarian, MD, FACG, chief of gastroenterology at Beth Israel Medical Center, and regular contributor to Mishpacha’s health column, has seen literally thousands of Crohn’s patients in his career.

Although considered an expert in his field, Dr. Baradarian is candid that doctors and researchers still find Crohn’s disease, its cause, and treatment, something of a mystery. Named after American gastroenterologist Burrill Bernard Crohn, who, along with two colleagues, first identified the cluster of symptoms in his patients in 1932, Crohn’s disease is thought to be an inflammatory disease of the intestines. Thus most people think of it in terms of stomach upset. Dr. Baradarian corrects that narrow perception:

“Crohn’s can affect any part of the gastrointestinal tract from the mouth to the colon. My patients experience many manifestations of this illness, ranging from joint inflammation, eye disease, blood problems, psoriasis, and often, extreme fatigue and weight loss. There is a genetic component in about 25 percent of patients, but some Crohn’s sufferers don’t know if anyone else in the family ever had it. Research also points to causes like environmental factors affecting harmful bacteria that line the colon and intestinal tract. Multiple treatment modalities exist with medications, antibiotics, and repopulating the intestinal tract with healthy bacteria (probiotics) to treat the symptoms and prevent flare-ups.”

The Roller Coaster

Flare-ups are a reality to just about every Crohn’s patient. Stress, lack of sleep, noncompliance with medicine, eating a food that triggers a flare-up, and any number of other factors prove that no cadre of medicines is foolproof, without constant vigilance and monitoring. Certain habits are directly linked to flares, such as smoking and taking anti inflammatory medication like aspirin.

“Inflammatory bowel disease [Crohn’s] is a lifelong disease,” Dr. Baradarian points out, “but in a certain subset of patients, it becomes quiet, even without meds. It’s luck — we don’t know why that happens. Some young people have the diseased portion of their intestine removed, and it’s a curative procedure. Other patients have endured over six different surgeries, and lost 60 percent of their bowel. Crohn’s can be a very unpredictable disease, and is often more severe if it is diagnosed at a younger age.”

Eli* is in his mid-thirties, and he is candid that Crohn’s has laid him very low at times. Only a year and a half after getting married, he was so sick from the disease that he lost thirty pounds in four months, catapulting his new wife into the unforeseen world of caretaker. As the children came, he sometimes felt inept as a father.

“Four years after I was diagnosed, my doctor put me on Remicade, a sophisticated high-powered drug that worked so well for three years, I hardly had any problems. But the treatment itself was draining. Infusions of the medicine took all morning, every eight weeks, and it interfered with a new time-consuming job that I started. I couldn’t take off the time.”

So, Eli explains, he went off Remicade, and he’s managing the symptoms with other, less powerful medicines, but he is honest that it is a struggle: “My stomach is always hurting, and I’m tired a lot. The hardest thing is my family. I have the most incredible, supportive wife, and she always cooks whatever I need, since I’ve been on all these crazy diets. I often just collapse on the weekends and then my wife has to handle the kids. She’s been really great about it, but sometimes I feel really badly about how exhausted I often feel.”

Eli’s first doctor sent him into a dark depression when he delivered the verdict: “You’ve got Crohn’s and you’re going to have it your whole life.” He made Eli feel that his future would be gloomy. “Everyone wants to think they are healthy and indestructible, and no man in his mid-twenties wants to hear that he is going to be sick the rest of his life,” he explains. A second opinion from a well-respected doctor gave a more optimistic approach: “We can get your Crohn’s symptoms under control; I’ve seen many patients recover and you’ll get over it.”

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