Behind the bewildering struggle of suffering from Inflammatory Bowel Disease

As she described the years of suffering and havoc wreaked upon her by inflammatory bowel disease, or IBD, Shirley (a pseudonym) choked up several times, recalling how difficult it was – and remains – to cope with this silent yet highly disruptive ailment.

 

The bewildering array of symptoms she had to endure ranged from profuse and obstinate diarrhea and abdominal cramps to overwhelming fatigue and a high fever. Topped off by a skin disorder that resembles psoriasis, Shirley’s IBD encroached upon every facet of her life, sundering many of her social bonds and impeding her professional career.

“Imagine that nothing that you eat settles well. And what you do eat is not digested before you have a bowel movement, which is oftentimes uncontrolled and explosive,” she says. “IBD restricts your movement, and it has a psychological component because you don’t want to go out for fear of when you might need a bathroom,” Shirley notes, adding that “it isolates you and you become a prisoner of your discomfort.”

Shirley and others like her are far from alone in the distress brought on by this malady. IBD, an umbrella term that describes inflammatory disorders of the digestive tract such as Crohn’s disease and ulcerative colitis, often goes undetected.

It is estimated that more than 10 million people worldwide suffer from IBD. In Israel, there are at least 50,000 active cases, a number that has risen significantly in recent years, and experts believe the real figure may be much higher. This has placed new strains on the country’s medical system, which boasts only a handful of specialized centers equipped to identify and treat IBD.

Dr. Eran Zittan, head of the inflammatory bowel disease unit at Emek Medical Center in Afula, runs one such center.

While praising the quality and availability of IBD medications in Israel, Zittan stresses that “the system is still incapable of providing high-quality care and service to the entire IBD population, because the government still has the same approach it did a decade ago, viewing IBD as a very rare disease.”

He points out that most gastroenterologists do not specialize in IBD, and that “we have roughly just 10 to 15 such specialists in all of Israel.”

The result is that many of those who suffer from the disease are receiving treatment from physicians who lack the requisite multidisciplinary training and expertise, a situation that he says can directly affect the outcome for the patient.

Shirley can attest to this deficiency from her own experience. About 15 years ago, she began experiencing a great deal of discomfort in her gut, which led her to take a series of over-the-counter drugs which only further exacerbated her condition.

So she did what most people do and went to see her physician, a general practitioner. He referred her to a rheumatologist, who diagnosed her as having gastritis (an inflammation of the stomach lining), gave her some steroidal medicine and sent her on her way.

Needless to say, Shirley’s condition continued to worsen.

“I went to see professors in all the major hospitals and they all gave me the wrong diagnosis,” she recalls.

Only when a particular doctor, whom she will not name but describes as “a mature and seasoned practitioner who cared enough and took the time to perform a gene test, study it and then identify the pathology as most likely being linked to Crohn’s disease,” did Shirley at last discover the cause of her ailments. Incredibly, that revelation came after 10 years of misdiagnoses and mistreatment.

DIGESTIVE TRACT problems are nothing new for Jews. In fact, they were apparently so prevalent in ancient times that the Mishna (Shekalim 5:1) notes that ben Ahiya, one of 15 officials who served in the Temple in Jerusalem, was responsible for treating priests with “intestinal disorders.” The Talmud Yerushalmi (ibid. 13b) states that the priests suffered from such ailments in part because of the large quantities of meat from the sacrifices that they would eat, and that ben Ahiya “knew which particular wine was good for healing the intestines, and which type of wine would be bad for the bowels.” 

Ben Ahiya, in a sense, was the first recorded Jewish gastroenterologist.

The prevalence of such problems among Jews perhaps lies behind the well-known Yiddish expression, “Gezunt dir in pupik” (lit., “good health to your belly button”), which was a common way for European Ashkenazi Jews to wish one another robust health.

In the popular conception, IBD is largely viewed as an Ashkenazi Jewish phenomenon. This is thanks in part to various studies that found that one of the disease’s striking epidemiological features is that Ashkenazi Jews are between two and four times more likely to get it than non-Jews of European descent.

As Prof. Gilaad Kaplan of the division of gastroenterology at the University of Calgary’s department of medicine explains, research has found more than 200 genetic variants that make an individual more likely to develop IBD, and “many of these genes are common in Ashkenazi Jews.”

One recent study, he points out, discovered that Ashkenazi Jews have novel genes associated with IBD that are not observed in other European non-Jewish populations. But while noting that “the higher risk of IBD in Ashkenazi Jews persists today,” Kaplan highlights the fact that over the past 20 years, IBD has become “a global disease with rapidly rising incidence in regions like Asia and Latin American where it was rarely diagnosed a generation ago.”

He contends that “IBD is a modern disease of modern times that is associated with industrialization and Westernization of society. The globalization of IBD suggests that genetics lay down the foundation for developing the disease, but environment builds the disease.”

Among the children of immigrants to Western countries from places with a low prevalence of IBD, such as India or China, he says, the disease has been found to be far more ubiquitous. And experts are unsure of the potential causes, with theories suggesting that the typical Western diet high in fat, along with preservatives used in the manufacturing process and even alterations made to the water supply, may be contributing factors.

Indeed, as Zittan indicates, although half of the thousands of Jewish patients he treats each year are Ashkenazi, the rest are primarily of North African descent, which suggests that IBD is proving to be much less discriminatory in whom it targets.

This, as well as other reasons, such as a failure to properly identify IBD, leads him to believe that “although officially we have 50,000 patients in Israel, I believe that the real number is actually 100,000 or even higher.”

TACKLING THIS mounting problem, which has grown exponentially in recent years, presents the Israeli medical system with a profound challenge, as success in treating IBD requires the implementation of a multipronged approach.

One recent immigrant to Israel, who pioneered psychosocial assessments and intervention protocols for IBD in the United States, is aiming to assist the Jewish state in meeting the challenge.

As the founder and president of the IBD Support Foundation in California, and an internationally renowned authority on psychosocial care in the treatment of the disease, Dr. Marci Reiss brings a wealth of experience, along with a healthy dose of passion and commitment, to the cause.

In the course of her career, Reiss, who holds a doctorate in social work from the University of Southern California, developed a unique model of care using what she terms “psychosocial archaeology,” which takes a comprehensive look not only at the illness but at “all the complexities of [patients’] personal lives and unique personalities.” These include assessing the levels of practical and emotional support available, cultural and religious norms that may affect treatment, and the patient’s finances and work situation, which IBD will obviously impact. The goal, says Reiss, is to identify “barriers to treatment or wellness in the complex world of the patient.”

In 2004, she developed the first integrated model of IBD care at the pediatric inflammatory bowel disease center at Cedars-Sinai Medical Center in Los Angeles.

“I focus on IBD in part because it is in my family and I have seen the impact that it has had on many people. I focus my work on helping patients while they are sick,” she says. “There are many physicians and scientists searching for a cure. I thought it was incredibly important to help the suffering patient,” Reiss adds.

This perspective prompted her to establish the IBD Support Foundation in 2006, a nonprofit that seeks to improve the quality of life for IBD patients through psychosocial support, education and research.

Prior to making aliyah, Reiss initiated and established seven integrated IBD care centers throughout the United States, incorporating psychosocial care into treatment. This, she asserts, “is a critical component to improve disease outcomes and reduce cost and healthcare utilization.”

Reiss plans to work with local experts to raise awareness about the need for multidisciplinary care and introduce a standard of excellence that will serve a much larger share of those Israelis who suffer from the disease, particularly in the periphery.

She hopes to partner with Zittan of the Emek Medical Center and build “a center of excellence offering exceptional medical care and psychosocial care, the combination of which will reduce human suffering and costs for the entire country.”

This would be a welcome development, particularly since experts agree that the prevalence of IBD will only continue to grow in the coming years.

According to Zittan, “I believe that it will increase exponentially, especially among young adults between the ages of 18 and 30. In the next decade, the number may double or more,” he says.

“We will need more beds in hospitals, more IBD centers, more specially trained physicians. We need to move to a proactive approach toward IBD and change the paradigm.” 

To learn more about IBD, visit the website of the Israel Crohn’s Disease and Ulcerative Colitis Foundation at www.ccfi.co.il and the IBD Support Foundation at www.ibdsf.org