Our Struggle With IBD
DRESKIN, WILLIAM AND WENDY
WILLIAM AND WENDY DRESKIN When our daughter was born, Bill looked at her and said, 'It's Tanya!" She turned and looked at him as if she knew her father's voice and understood our joy at her...
...Sarah's parents took her to her pediatrician, who ordered blood tests, x-rays, a sigmoidoscopy, even bone marrow tests for leukemia...
...Rather than helplessly watch our daughter's misery when her symptoms flared up, we began doing our own medical reading...
...When the testing failed to provide any answers, the doctor told Sarah's parents she was going through an "early adolescence...
...Of course, overcoming these diagnostic obstacles and obtaining a diagnosis doesn't eliminate the stress of facing and coping with a serious, chronic condition...
...For example, in Norway and Sweden, a lot of Jews went underground during World War II, and evidently have not classified themselves as Jews—and there weren't too many to start with...
...Familial clustering means that, in the case of IBD, 15 to 30 percent of IBD patients will have a family member with the same disease...
...Both are inflammatory reactions that disrupt what doctors call the "normal architecture" of the bowel...
...Also, the risk of colorectal cancer in moderate to severe cases of ulcerative colitis increases substantially with each decade from the onset of the disease, even if the symptoms are mild or well-controlled by medications...
...Chances are you know someone with this condition...
...And ignorance about these diseases sometimes brings about a very unsympathetic response from family members, friends and even from physicians...
...These drugs have long been awaiting the Food and Drug Administration's approval for use in the United States...
...I was seeing a doctor for sciatica," recounts 60-year-old Tessie Siegel...
...Siegel's weight loss and back trouble were not two separate problems—she had Crohn's disease...
...It was first described in 1932 by Drs...
...Steven James of the...
...Albert I. Mendeloff of the Johns Hopkins University School of Medicine pioneered the study of IBD in the Baltimore area in the early 1960s and found that Jews were between 25 and 35 times more likely to have IBD than were members of the general populatioa But 20 years later, doctors have yet to find a simple inheritance pattern or genetic mechanism for IBD, and Mendeloff now preaches caution on the subject In different parts of the world, epidemiologists—scientists who deal with the incidence and distribution of disease in a population—have produced results that only complicate our understanding of IBD...
...Another theory proposes that in people with IBD, the bowel is susceptible to invasion by bacteria that are harmless to other people...
...When we first told friends and relatives about Tanya's difficulties, we were surprised to discover that we knew people who had IBD...
...The only "cure" for ulcerative colitis is proctocolectomy, surgical removal of the colon and rectum...
...After three sessions she was surprised to see her father at the psychologist's office when she arrived one morning...
...to 6:00 a.m...
...Mendeloff and his colleagues are aware of these problems, but nevertheless maintain that the disease is linked to Jewish genes...
...Later that year Ruthie had surgery...
...The origin of the stress idea is easy to understand since IBD, like many other serious chronic diseases, can be exacerbated by physical or psychological stress...
...In some cases, people can be free of symptoms for months, or even years, between attacks...
...IBD is an actual inflammation of the tissue," explains Dr...
...The problem was in Tanya's gut, not in our heads...
...The doctor felt that further testing was inappropriate and criticized us for wanting to put Tanya through more tests, but agreed to do the procedure...
...The Jewish community can offer understanding and support to those afflicted...
...Medication did not adequately control the condition...
...IBD is a genetic riddle awaiting a solution...
...The gut is an organ that is sensitive to psychological stress and almost everyone has experienced butterflies in the stomach before a class play, or a quick trip to the bathroom before a job interview...
...the cause is obviously beyond the sufferer's knowledge or control...
...Elizabeth's Hospital in Boston...
...No problem...
...More recent studies have failed to link IBD with any particular personality type or with any type of mental illness...
...The myth of Jewish diseases became a scientific reality when Tay-Sachsdisease (a fatal nerve disorder) and Gaucher's disease (which affects the bones, spleen and liver) were found by geneticists to be genuine Jewish diseases, Le, genes for the disease are'carried by Ashkenazic Jews more than by members of any other ethnic group...
...The belief that stress or neurosis is a cause also hangs on in the medical community— particularly among doctors who went to medical school in the 1940s and 1950s, when the notion of a "colitis personality" was prevalent...
...But only further research can solve the mystery—and the pain—of the disproportionately high numbers of Jews suffering from IBD worldwida riate treatment programs...
...We began the rounds of specialists and endless testing...
...This was round-the-clock misery...
...At 13 she was losing weight, embarrassed about facing her junior high classmates and depressed about "always being in the bathroom...
...In many cases symptoms recur and surgery must be repeated...
...The specialists were certain that an intestinal infection was not the cause of Tanya's problems, and they were also sure that Tanya did not have an inflammatory reaction in her colon...
...I had to talk to a psychiatrist every day...
...We divided the nights between us...
...Jews, usually having much better than average access to medical care in urban areas where these studies were done, were diagnosed more often for that fact alone" Therefore a disproportionate number of Jews appeared in the study...
...Coping with IBD addresses the special concerns of children and teenagers.* Despite the educational efforts of NFIC, IBD remains to some extent a "closet illness...
...Tanya had IBD, inflammatory bowel disease...
...What we see in IBD is "the interaction of two sets of factors," say Dr...
...While quality medical care is essential for people with IBD, the human dimension is equally important...
...Part of this has to do with who is a Jew...
...There are many reasons for this stressful and costly road to a diagnosis of IBD...
...Ruthie Rosenthal was told she had Crohn's disease when she was 11 years old...
...to 2:00 a.m...
...In addition, a study showed that Israelis born in Europe were twice as likely to have ulcerative colitis—the other form of IBD—as were Israelis from Africa and the Middle East This led to the hypothesis that IBD, like Tay-Sachs and Gaucher's, is primarily a disease of Ashkenazic Jews, not Sephar-dic Jews...
...She assumed it was a stomach flu, but the cramps continued for days which lengthened into weeks...
...These drugs are not always successful in suppressing the symptoms...
...However, in Malmo, Sweden, the incidence of Crohn's disease—one form of IBD—among the small Jewish population was found to be 15 times that of Jews in Tel Aviv...
...Despite a recent increase in the reported incidence of Crohn's disease, funding for IBD research is low, with a total of S4.8 million spent in all forms of IBD research in the United States in 1986...
...I was also on a diet and I was impressed with how well I was doing...
...Unfortunately, the frustrations we experienced and the long delay in obtaining a correct diagnosis are not unusual, particularly in the case of Crohn's disease...
...That is the part that a supportive and well-informed family and community can cure...
...There is no test yet developed to detect carriers of dysautonomia, an estimated one in 50 Jews...
...Several of the pediatric gastroenterologists raised their eyebrows at our reports of Tanya's symptoms...
...They tried to make me eat 3,000 calories a day, but I couldn't eat...
...Wendy would take the 10:00 p.m...
...The pathologist's report confirmed that there was an inflammatory reaction in the colon...
...Banks of St...
...The psychologist, in consultation with her parents, seemed to think she had bulimia (binging on food and vomiting or using laxatives to keep weight down) and committed her ta a psychiatric hospital...
...However, when people think a health problem is due to stress, they blame the sufferer because they believe that the condition is in the person's control...
...Often, victims of the disease will try various kinds of special diets, yoga or biofeedback...
...They thought I was throwing up secretly...
...Elizabeth's points to one area where progress has been made...
...The studies that showed [that Jews had a disproportionately high incidence of IBD] were done in cities first of all with large Jewish populations," explains Dr...
...To confuse the situation further, the "extraintestinal" symptoms of Crohn's disease may precede intestinal symptoms by months or years...
...The embarrassing symptoms often make patients reluctant to mention it...
...We now know how wrong that assumption was...
...Although fatalities are unusual, these diseases frequently cause substantial suffering and disability through symptoms of diarrhea, severe abdominal pain, fever, weight loss and rectal bleeding...
...NFIC lobbies for government funding and also gives grants directly to researchers...
...Patients with Crohn's disease can relieve many symptoms by going on an "astronaut diet" (liquid diet), according to Dr...
...Her parents decided to take her to a psychiatrist...
...This was not the colic the books talked about, with a fussy time from four to six in the afternoon...
...Ji * These brochures are available at no charge from NFIC, 444 Park Avenue South, New York, NY 10016...
...The second, Crohn's disease (sometimes called regional or granulomatous ileitis), involves the whole thickness of the intestinal wall...
...By the start of her senior year, she weighed only 64 pounds...
...With this illness, it often takes three to five years before doctors make a correct diagnosis, because symptoms can be intermittent and the early symptoms are not always gastrointestinal...
...When Tanya was 26 months old and her symptoms flared up again, we asked the doctor to repeat the sigmoidoscopy (a procedure to look at the rectum and descending colon with a special scope) and to take biopsies (to examine tissue and check for inflammation in the colon...
...It's not surprising that psychotherapy didn't help her symptoms...
...Ruthie was told her Crohn's disease wasn't "very active" at that time, and that her problems were due to her parents' divorce...
...She was depressed and didn't want to go to school...
...She was tested for tropical diseases, though she'd never been out of the country...
...Amid the confusion, one trend stood out clearly: Where Jews live in mixed populations, they are considerably more at risk for IBD than are their neighbors...
...Strangely, rates of IBD are not high in Israel...
...Doctors may find it difficult to diagnose IBD when they don't suspect it...
...They told me I had an eating disorder...
...So this identification of her problem meant that the doctors could prescribe appropriate medications, at least to treat the symptoms...
...But wherever they've been able to find them—as in Malmo—there the Jewish rate was about five times the expected...
...Both ulcerative colitis and Crohn's disease can be mild or severe...
...T. Gilat and his colleagues...
...Stress, like the loss of a loved one, can precipitate an attack of IBD but emotions or stress does not cause IBD...
...The National Foundation for Ileitis and Colitis (NFIC), a nonprofit organization founded in 1967, is working to discover the causes of IBD and to find a cure...
...Last year, four doctors at the Ichilov Hospital and Sackler Faculty of Medicine at Tel Aviv University reviewed all the data and came up with a compromise...
...For many, the worst part of the disease is not the embarrassment, the drugs with all their uncomfortable and dangerous side effects, or even the pain and the repeated hospitalizations...
...We learned that inflammatory conditions of the gut can be elusive and intermittent...
...Another cause of confusion is the common disorder called "irritable bowel syndrome" (IBS) or "spastic colon," which has symptoms similar to IBD's...
...Sometimes the sufferers themselves will become convinced that the cause of the problem is stress, emotional "weakness" or dietary excesses...
...We paced, we rocked, we tried bottles of warm water, car rides, pacifiers, peppermint and every home remedy we heard of, to no avail...
...The inflammatory bowel disease (IBD) Tanya was suffering from is a surprisingly common gastrointestinal disease affecting approximately two million Americans...
...This would mean that antibodies that normally recognize and attack molecules carried by foreign substances (e.g., bacteria), instead attack molecules native to the intestines...
...When I'm in pain nothing anyone can do or say makes me want to eat...
...Daniel Present, associate professor of medicine at Mt...
...The disease affects Ashkenazim but is rarely seen in Sephardim...
...The answer was yes...
...But the Israelis born in Israel, even those of Ashkenazic descent exhibit the lower incidence of IBD seen in Sephardic Jews...
...Doctors, friends and family blame the problem on stress, lifestyle, attitude, diet or neurosis...
...The school recommended a psychologist...
...When Tanya became ill we had naively assumed that if we took our daughter to medical specialists and they did the appropriate tests, the doctors would tell us what was wrong and why it happened...
...Informational brochures cover many aspects of IBD, including complications, diet and nutrition, pregnancy, and government benefits available to patients...
...However, many people do not understand that similar symptoms may spring from very different causes...
...Now that she is eighteen and on her own, Ruthie is able to get appropriate medical care and treatment for her Crohn's disease...
...The doctors began to blame us—we were labeled neurotic, overconcerned parents who apparently were misinterpreting Tanya's normal upsets and the normal ups and downs experienced by new parents...
...In the absence of a correct diagnosis, doctors, friends or family may blame the problem on stress, lifestyle, attitude, diet or neurosis...
...Victims of these unglamorous diseases need to feel accepted...
...Doctors may make notes in their patients' charts about a "doctor-going personality" and often make referrals to a psychiatrist or psychologist...
...It is actual tissue injury...
...Support groups for people with IBD are organized by local chapters across the country...
...We knew something was very wrong...
...About two-thirds of Crohn's disease patients eventually require surgery, and even this is not a cure...
...FDA says it must maintain its rigorous testing procedures...
...But by two weeks of age, Tanya was crying day and night, pulling up her knees with cramps, suffering from diarrhea, and soaking everything in sight with spit-ups...
...Four months, five months, six months and no improvement...
...When people think a health problem is due to stress, they blame the sufferer...
...Many people heard of it for the first time when they learned of President Dwight D. Eisenhower's struggle with the disease...
...Some doctors prefer to ignore the Jewish factor in IBD altogether...
...In the early 1970s it was found that the incidence of ulcerative colitis in Jews in Tel Aviv was tower than that of the general population in many parts of Europe arid the white population in the United States...
...Sarah's problem was not psychological, although it might have soon become so...
...These remissions may make it appear * Names have been changed throughout this article to protect the sources...
...Ruthie spent six weeks in the psychiatric ward...
...Although the role of heredity in the disease is poorly understood, IBD does tend to cluster in families (see box, p. 26...
...SEPTEMBER 1988«MOMENT 29...
...Sinai Hospital in New York...
...Given his preconceptions, he was quite taken aback with the results: "If I didn't know these biopsies were Tanya's I'd have to say they were clearly abnormal...
...Sinai Medical Center in New York, though he notes there is an obvious disadvantage: "The problem is people like to eat...
...Dr...
...Medical treatment of IBD has changed very little in the last few decades...
...Another often-fatal hereditary disease that affects Jews, dysautonomia, causes wide swings in blood pressure and body temperature, inability to feel pain, and vomiting attacks...
...At seven months we were shocked to see blood in Tanya's stool, and her pediatrician withdrew the colic diagnosis and referred us to a major medical center...
...Crohn, Ginzburg and Oppen-heimer at Mt...
...One obstacle to diagnosing IBD is that its typical course is one of remissions and flare-ups...
...We should acknowledge their courage in their struggle to lead productive lives...
...But IBD does not follow any known genetic laws, and there is no genetic testing available as there is for Tay-Sachs, the most widely known "Jewish disease...
...They made it clear that they thought we were fabricating the reports of Tanya's intermittent rectal bleeding...
...Fortunately, Tanya's symptoms have subsided and she is not currently taking medications...
...Colic," said the pediatrician...
...Specific intestinal infections caused by bacteria or parasites are usually easy to track down with tests...
...Despite the diagnosis and the well-known fact that Crohn's disease can cause weight loss, a pediatric gastroenterologist put her in a psychiatric ward...
...Like people with other chronic, incurable conditions, IBD patients have joined forces in their own organization...
...The cause of IBD remains a mystery...
...We havent been able to establish what it is about being Jewish that causes the risk," explains Mendeloff...
...that's less than $5 per patient...
...Peter Banks, chief of gastroenterology at St...
...However, the presence of fever, bloody diarrhea, nocturnal diarrhea, serious weight loss, or inflammations of the joints, mouth or eyes, not typical of IBS, make doctors suspect IBD if infections are ruled out...
...Secondly, many years ago, only people Who had access to very good medical care were able to have the diagnosis -made...
...She seemed perfect in every way...
...National Institute of Allergy and Infectious Diseases at the National Institutes of Health...
...Months passed but no one had any answers...
...it'll go away in three months...
...The first, ulcerative colitis, a condition first described centuries ago, affects the lining of the colon or rectum...
...with cramps and diarrhea...
...IBS can be caused by stress or poor diet, although researchers are beginning to identify other factors as well...
...During this time, in addition to dealing with the disease itself, most IBD sufferers also have to deal with accusations of malingering, with their own guilt feelings, and sometimes with inappropIs IBD a Jewish Disease...
...The three-month mark passed...
...shift, and Bill would take 2:00 a.m...
...She turned and looked at him as if she knew her father's voice and understood our joy at her arrival...
...With increased understanding of nutritional support, children with IBD are suffering less from stunted growth...
...Heredity could account for the fact the Ashkenazic Jews are much more at risk than Sephardim in Israel...
...The doctors had refused to prescribe drugs to relieve her symptoms until they made a diagnosis...
...Ruthie was horrified...
...IBD can also cause arthritis, skin disorders, eye problems and other "systemic" manifestations...
...The study of the epidemiology of ulcerative colitis and Crohn's disease in Jews offers strong support to the view that environmental factors are paramount in the causation of IBD...
...I told them, 'I'm sick.' They said, 'No, you're not.' I was watched all the time...
...for a time as if home remedies, giving up coffee and onions, or ineffective medications have worked...
...for example, the agency is testing 5-ASA as a new drug even though it is the active ingredient in an old drug...
...It took months before the internist and orthopedist realized Mrs...
...It is not purely coincidental that we are Jewish—in the United States the risk of IBD-for Jews is about four times greater than the risk for the general mlation, according to the National Foundation for Ileitis and Colitis...
...NFIC is also an educational organization, and it serves as a resource to patients and their families and to primary care physicians...
...Although there was no improvement in her condition, Sarah continued therapy for two years...
...IBD is usually seen in one of two forms...
...Symptomatic treatment includes sulfasalazine (which has been in use since the 1940s), with patients often remaining on a "maintenance dose" for months or years, and corticosteroids, which often relieve acute attacks but can have serious side effects such as stunting of growth, immunity suppression, diabetes, hypertension and personality changes...
...Present is more optimistic about certain medications that are already in use in other countries, such as an aspirin-related drug called 5-ASA, which is the active ingredient in sulfasalazine but has fewer side effects, as well as several immunosuppressive drugs that have fewer side effects than traditional corticosteroids...
...But current research] also suggests the coexistence of genetic factors...
...I was losing about three pounds per week...
...I was mad...
...But once they suspect it, there are diagnostic tests they can use...
...One theory is that it is one of the autoimmune diseases...
...The worst part is being blamed for the disease, the repeated accusation, "You're doing it to yourself...
...It can begin gradually or abruptly...
...Because IBD damages tissue, it can be diagnosed by looking at the intestines using either x-rays, internal examination, or biopsy...
...Most people would not blame a person suffering from a disease of the eye, heart or kidney...
...Eleven-year-old Sarah Adler* woke up at 2:00 a.m...
...Scientists identified the genes that cause these illnesses, and then tested whether these genes were especially prevalent in the Jewish population...
...In irritable bowel syndrome (IBS) the tissue is healthy to all appearances, including under the microscope...
...It begins gradually, and usually attacks the small intestine, colon or both, but Crohn's can attack any part of the gastrointestinal tract...
Vol. 13 • September 1988 • No. 6
