Coping with Crohn’s| February 2, 2011
What is Crohn’s disease and how does it shape living a successful optimistic life?
“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.”
Suri,* now forty-four, was diagnosed at age thirty-three, but looking back, she recognizes that she actually had Crohn’s since age sixteen. Like many Crohn’s patients, she was misunderstood for years: “My mom said I was a picky eater, since there were many foods I wouldn’t eat because they upset my stomach. Intuitively, even at age eight, I knew to avoid orange juice, soda, tomato sauce, and salad. It took years for the doctors to diagnose Crohn’s. When told that it was all in my head. I protested: “It’s not in my head, it’s in my stomach!”
Crohn’s has had a devastating impact on Suri’s body. “My intestine was so scarred from all the years of active Crohn’s disease, that I required surgery,” she relates. “That sounds terrible, but actually, the surgery made me feel tremendous. The recovery wasn’t nearly as painful as the symptoms of my disease before surgery.”
Suri has managed her fairly regular flare-ups with immunosuppressants, and two separate rounds of steroids, which has had other unfortunate consequences: “Being on prednisone makes me ravenous, so I’ve gained back the fifty pounds, and more, that I lost when I couldn’t eat, and I have to be weaned very gradually off it once I start.” Suri is grateful for the relief they offer, but also wary about the dangers of steroid use. “Steroids are a lifesaving drug, but the side effects are nasty.” Still, Suri keeps her spirits up best as she can: “There’s a lot of hope out there. I make the most out of every day.”
Crohn’s and Diet
After thirty-nine years of suffering with intestinal trouble related to Crohn’s and colitis, Chaim* recently took the plunge into an entirely gluten-free diet. He was amazed when the intestinal symptoms he has experienced since the age of sixteen completely disappeared. He reflects: “I didn’t even know what it was like to feel full of energy. It’s not difficult at all these days to give up gluten — we have such a plethora of foods available with a hashgachah. I’m involved in a gluten-free support group and I keep hearing — ‘I miss this, I miss that.’ My reaction is incredulous. So I can’t eat real pizza or fresh challah. I still eat better than my ancestors ever did! And I feel great. Giving up gluten is a very small price to pay.”
Chaim’s experience could lead many to presume that any Crohn’s sufferer willing to part with pizza will live a symptom-free life. Actually, one of the frustrating aspects of Crohn’s is that individuals each have their own particular food sensitivities, making it very difficult to find the right diet other than experimenting. Suri can enjoy apples and pears with the skin, but other Crohn’s patients would be doubled over in pain. Suri found her answer in low fiber, high protein, high carb, and only a few steamed vegetables. She explains: “My body gives instant feedback. I know after ten years what I can and can’t eat.”
Chani,* a mother of a son with Crohn’s, agrees with this approach: “We found amazing results with the specific carbohydrate diet (SCD) and Elaine Gottschall’s book, Breaking the Vicious Cycle. It isn’t easy, and my son couldn’t handle it for more than a few months, but in my experience, adherence to SCD along with traditional treatment allowed my son and his doctor to reduce and even eliminate certain medications.”
Rikki,* married for twenty-two years to a man with food sensitivities, admits that it wasn’t simple in the beginning of their marriage to learn how to cook for his special needs. He needs to avoid all onions, potatoes, and yeast, which eliminates many of the accustomed foods in her repertoire. With the perspective of a long marriage, Rikki now sees her husband’s dietary needs as a blessing. She explains: “I enjoy the challenge of helping him be healthy. He eats better than anyone in our family. Because he can no longer just eat a bagel and cream cheese at work, I often make him nutritious lunches and he really appreciates it. I see the blessing in his diagnosis since it forced him to adapt a much healthier diet. I’ve also become a more creative cook. I didn’t think I would ever learn how to cook without onions, but I did!”
Caring for a Loved One with Crohn’s
Crohn’s is far more common that one might think. As one sufferer relates, “I walked into shul after my Crohn’s-related surgery, and a guy reached out his hand and shook mine. ‘Welcome to the club,’ he said. Crohn’s, I’ve found, is so common in our community, I run into guys right and left who have it.” That being the case, there are also many in our community who must cope with a loved one with Crohn’s.
Miriam’s* son, now a young man in his thirties, suffered with a variety of ailments for years before being diagnosed with Crohn’s. Miriam recalls: “My son didn’t initially have the digestive problems you normally associated with Crohn’s. He was suffering from a chronic cough and conjunctivitis, and painful canker sores. He was away at yeshivah, and he’s the kind of person who doesn’t complain about anything. So when we saw him near the end of the zman and he had dropped forty pounds, we were very alarmed.
“Once we saw his deterioration, we swiftly took him to the doctor who diagnosed him with Crohn’s and started treatment.” Six months later, Miriam got a call no mother ever wants to get from her son’s yeshivah. “My son called from the hospital that he had required the emergency room on Friday night. He subsequently had to be transferred to a different hospital, where he was scheduled for surgery a few days later. He missed a month of yeshivah for recovery, which was long and painful, but the surgery restored him to excellent health. Although he will be on medication for a lifetime, he is now, baruch Hashem, married for five years, with three beautiful children.”
Miriam is the mother of a son with Crohn’s, the mother-in-law of a son-in-law with Crohn’s, and now a bubby many times over. Crohn’s has not stopped her family from achieving all of the life dreams they ever had for one another. It’s something to deal with, but it hasn’t been a deal breaker.
Shoshie,* the mother of a son diagnosed with Crohn’s as a teenager, shares a similar attitude. Mothers like Miriam and Shoshie learn to look at Crohn’s with an optimistic “half-full” attitude. As Shoshie points out: “Our situation has really been b’chesed. Our son’s Crohn’s has been the type controlled with medication.” Shoshie could bemoan Crohn’s, or she can focus on hakaras hatov for the digestive processes in her son that are working just fine. She chose the latter, knowing that everyone has nisyonos in life. Simchah and proper perspective are some of the tools used to rise to the challenge and grow with what Hashem has granted you.
Raizy* manages to keep an upbeat attitude, but as the wife of a man who has suffered from devastating Crohn’s symptoms, she also candidly shares how her husband’s declining health has impacted both of them. Married for over thirty years, they too keep Crohn’s in perspective, but it certainly has tested their strength. Her husband’s trouble began seventeen years ago with joint pain in his knees, a common side effect of Crohn’s patients. He was only in his mid-thirties, a busy doctor, and way too young to be feeling like an old man when he got out of a chair. Since his diagnosis, he has endured three intestine surgeries, two knee surgeries, a hernia, and a burst appendix. He is now suffering from heart complications as well.
Unlike some Crohn’s patients who find surgery to be a panacea that removes most, if not all, of their symptoms, Raizy’s husband has not found such relief. His medical practice is now part-time, and on many days he can’t work at all. The high cost of drug treatments, combined with the reduction in his practice has led to a serious financial setback. As a result of all these handicaps, he often suffers from depression, which is a strain on any marriage. He is scheduled for another surgery in the near future, and Raizy admits, once in a while, she has a really bad day and breaks down. These days are few and far between though, because, as she remarks: “It takes more muscles to frown than smile, so I just keep smiling. I’m the woman walking down the street in a sheitel wearing an earpiece, so it looks like I’m on the phone, but I’m actually talking to Hashem! I never know what the day will bring. My husband can come out of a room and be jolly, and two seconds later he could be sick to his stomach. There are days when I have to rush to his practice because he is suddenly sick. People who are close to us and know the situation say, ‘I don’t know how you are managing this,’ but frankly, we’ve been living with Crohn’s for so long, it’s natural.”
Penina,* baruch Hashem, has a happier prognosis for her daughter. Surgery turned out to be the solution when her daughter was diagnosed at age thirteen. Penina’s older son had been away at medical school and when he came home on Pesach break, he instinctively felt that his sister wasn’t well. Although she had always been petite, he noticed that she had matured in her facial features, but her body was disproportionate, and she looked frail.
His instincts were correct, and the doctor didn’t mince words: “Your daughter is bleeding internally, from top to bottom. This is urgent.” She was placed on a regime of steroids and Remicade. A short-statured teenager with a swollen face and belly and regular stomach pain would be justified to sulk. But that was never her response. Largely in remission now, her mother couldn’t be prouder of her daughter, now age twenty: “She takes low-dosage meds, is studying to be a nurse, works for Chai Lifeline, and is always helping younger kids who want to speak to someone about Crohn’s. We are always monitoring her health, but she’s happy. We do worry about how this will affect shidduchim, but she’s brave, and a wonderful girl.”
Crohn’s and Shidduchim
Shidduchim is on the mind of every parent with a child who has Crohn’s. Miriam’s son and son-in-law both have Crohn’s, so she’s intimately familiar with the concern. She reflects:
“My son was diagnosed with Crohn’s when he was eighteen and not long after that my daughter was engaged to a boy with Crohn’s. We were familiar with the disease through my son, so we weren’t put off by my son-in-law’s situation. We knew that many people are living perfectly fine lives with Crohn’s. When my son was in the shidduch parshah, we encouraged his kallah’s family to talk to our doctor so they would feel comfortable with his diagnosis.”
Dr. Baradarian sees promising medical advances in treatment and diagnosis that will make the lives of his Crohn’s patients more productive and symptom-free. He has seen many of his Crohn’s patients marry, earn a living, have children, and raise a family. They live with Crohn’s as an irritating aspect of life, perhaps, but not a devastating diagnosis.
Eli takes great comfort in a gemara he located in Eiruvin: “There are three people that don’t see the face of Gehinnom. Someone who has pressing poverty, someone who has stomach problems, and someone who has creditors pursuing him.” Returning to this gemara over and over again, Eli strives to accept his Crohn’s with love, and to make the best of it.
Defining Crohn’s Disease
Crohn’s disease is a chronic disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the intestines, it most commonly affects the small intestine and/or colon.
Crohn’s disease is marked by an abnormal response of the body’s immune system. Researchers believe that the immune system mistakes microbes, such as bacteria that are normally found in the intestines, for foreign or invading substances, and launches an attack. In the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury.
Although Crohn’s disease most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine (the colon), it may involve any part of the GI tract and all layers of the intestine.
It is estimated that as many as 1.4 million Americans have IBS (irritable bowel syndrome) — with that number evenly split between Crohn’s disease and ulcerative colitis. Males and females appear to be affected equally. Crohn’s disease may occur in people of all ages, but it primarily affects those between fifteen and thirty-five. Ten percent of those affected — an estimated 140,000 — are youngsters under the age of eighteen.
Symptoms may range from mild to severe. Because Crohn’s is a chronic disease, patients will go through periods in which the disease flares up and is active. These episodes are followed by times of remission. In general, though, people with Crohn’s disease lead full, active, and productive lives.
(Excerpted from the Crohn’s and Colitis Foundation of America.)
(Originally featured in Family First, Issue 229)
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