As chairman of the Department of Medicine at Mount Sinai Hospital, Dr. Mark Babyatsky is a gastroenterologist who has specialized in inflammatory bowel diseases since 1984. Seventy-five percent of his patients have Crohn's disease.
Who's at risk
"Crohn's disease is an inflammation of any part of the digestive tract," says Babyatsky. "It's most commonly located in the small intestine or the large intestine." More than 500,000 people in the U.S. are living with Crohn's disease. An even greater number have ulcerative colitis, a similar inflammatory bowel disease that strikes the colon.
"For reasons that we don't completely understand, these numbers are increasing and Crohn's is becoming more common," says Babyatsky.
Some groups are at higher risk of Crohn's disease than others. "Doctors have long recognized higher incidence of Crohn's in people of Scandinavian descent and the Ashkenazi Jewish population, which is Jews of Eastern European origin," says Babyatsky.
"Western European Jews have a lower incidence." Doctors have recently found other groups at risk, and now agree that any group can get Crohn's.
The biggest risk factor is genetics. "There's a genetic predisposition, but it's not strictly inherited," says Babyatsky. "If your parent or first-degree relative had the disease, your risk is 5% higher."
Doctors are also exploring environmental factors that contribute to the risks, stomach bacteria in particular.
"There's good and bad bacteria in terms of inflammation," says Babyatsky. "But we're not quite there in terms of understanding how that affects Crohn's."
The disease commonly shows up in young people. "The most common age of presentation is 15 to 30 years old," says Babyatsky. "Crohn's tends to be a young person's disease, and can appear even in childhood." There's a second peak of diagnosis from age 60-80.
Signs and symptoms
Crohn's diseases presents itself in different ways, depending on where the inflammation is in the gastro-intestinal tract.
"Abdominal pain, diarrhea and bloody bowel movements are three textbook symptoms," says Babyatsky. "Secondary symptoms can include weight loss, nausea and loss of appetite." In some patients, the disease causes abscesses or fistulas that can affect surrounding tissue or organs.
For most patients, Crohn's symptoms present as sporadic attacks. "These are symptoms that come and go," says Babyatsky. "Some people have one attack and then it doesn't come back, but most people have recurrences." Crohn's attacks are often triggered by factors like stress, smoking, certain foods (especially high-fiber foods and dairy) and nonsteroidal drugs, including aspirin and non-aspirin products.
One challenge of living with Crohn's disease is that it can be difficult to diagnose. "It takes a while to get the correct diagnosis, and Crohn's is often confused with irritable bowel syndrome," says Babyatsky. In milder cases, patients may think they are feeling the effects of a change in diet or bowel habits, or even an infection.
Crohn's is easy to diagnose once the doctor orders screening tests like a colonoscopy, X-ray or CT enterography. "These tests give images of the GI tract's lining," says Babyatsky. "The doctor can actually see abscesses, strictures or inflammation."
Doctors now have a powerful array of treatment options for Crohn's disease. "The traditional treatments include a novel class of anti-inflammatory medications, immunosuppressive agents at lower doses, and antibiotics," says Babyatsky. "Most of these drugs are taken orally."
In the past 15 years, a newer generation of drugs have dramatically improved quality of life for Crohn's patients.
"Starting in 1998, we've had anti-TNF (anti-Tumor Necrosis Factor) medicines like Remicade," says Babyatsky. "These drugs are antibodies against an inflammatory substance that is increased in Crohn's patients."
Doctors call these drugs biologic treatments because they're directed against the particular biology of the disease. "Now there's a family of anti-TNF medications and these are used extremely frequently and effectively for many forms of Crohn's," says Babyatsky, "especially for people with fistulas."
Surgery is an option of last resort for most patients because the disease is recurrent and the drugs are so effective.
"Nonetheless, for some people surgery can be a tremendous option," says Babyatsky. "The surgeon removes the inflamed part of the GI tract, strictures or the fistula."
Doctors' understanding of Crohn's disease has increased radically in the past decade. "We've found that there are two major pathways in the disease: the first related to the bacteria in the gut and their relationship to how the body handles them, including autophagy, a particular process of degeneration in the cells. The second is a specific pathway of the body's immune system.
Targets against these factors are being evaluated," says Babyatsky.
"The next step is to use this knowledge to develop the right strategies for treating diseases like Crohn's," he says. One hope is to use good bacteria, called probiotics, to counteract the bad bacteria that cause Crohn's.
Questions for your doctor
If you're diagnosed with Crohn's ask, "What are the triggers I can avoid?" For many patients the answers include nonsteroidal drugs, not smoking and certain foods. Another good question is, "What risk do my family members have of getting the disease?
The third question is, "Is this going to kill me?" Almost without exception, the answer is no.
Babyatsky counsels patients that Crohn's is now a manageable disease. "Under great care, patients have a normal life span and, in some cases, permanent remissions."
What you can do
Comply with medication.
Take your medications as prescribed and have a close working relationship with your doctor.
Keep a dietary chart.
The triggers for Crohn's are different for everyone, and keeping a chart can help identify your pattern. High-fiber foods and dairy are two common triggers.
See a nutritionist.
No single diet fits all Crohn's patients, so working with a nutritionist is key. Most nutritionists will ask you to keep a food log, then design a diet tailored to your specific needs.
The Crohn's Colitis Foundation (ccfa.org) posts excellent, up-to-date information, including search engines for clinical trials and physicians who specialize in the disease.
Ask about colon cancer screening.
Patients with Crohn's in the large intestine can be at increased risk of colon cancer. Most doctors advise colon cancer screening eight-10 years after diagnosis with Crohn's, and repeating it every one to two years.