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Published on February 01, 2016

The invisible illness with the name you know

The invisible illness with the name you know

Crohn’s disease is one of those ailments that may be more widely known than actually understood.

“A lot of people have heard of it but they don’t know what it is,” said Jay Yamin, MD, a gastroenterologist at The GI Clinic in Hyannis. “People sometimes confuse Crohn’s disease and ulcerative colitis. They have similar symptoms but they don’t affect the same area.”

Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract. It is one of a group of conditions known as inflammatory bowel diseases, or IBD, according to the Crohn’s & Colitis Foundation of America.

It most commonly affects the end of the small bowel, known as the ileum, and the beginning of the colon. Ulcerative colitis is a condition of the large intestine.

Crohn’s disease can affect any part of the gastrointestinal tract, or GI, bringing on abdominal cramps and persistent diarrhea. Many patients experience fatigue, loss of appetite and weight loss, Dr Yamin said.

But it may also cause trouble beyond the intestines, including joint problems, skin rashes and visual problems.

“Arthritis is a manifestation of Crohn’s disease,” he said. “It will parallel the course of the disease’s flare-ups. You have joint problems when you have bowel problems.”

Crohn’s often afflicts the young. The condition is most prevalent among people between 15 and 40, though it can occur at any age. And it tends to run in families.

“If you or a close relative have the disease, your family members have a significantly increased chance of developing Crohn’s,” according to the foundation. “Men and women are equally likely to be affected.”

Because of the range of symptoms and their locations, it takes thorough testing to make a diagnosis of Crohn’s disease. The colonoscopy is the gold standard, although sometimes an MRI or CAT scan is required, Dr. Yamin said.

Treatment is based on the severity of the condition and the age of the patient, said Dr. Yamin. Steroids or prednisone are used initially as an anti-inflammatory medication. If that doesn’t work, physicians often turn to medications that lower your immune system.

Newer medications target the Thymidylate synthetase molecule, or TS, the first advancement in 15 years, he said. “Treatments can have risks but are very well tolerated for the most part.”

The condition often reduces your appetite while increasing your body’s energy needs, so people with Crohn’s are encouraged to reduce their symptoms by maintaining good nutrition and a healthy diet, the foundation advises.

Crohn’s disease was in the news last fall when a woman in Florida who was diagnosed at 15 asked on a Facebook page whether Crohn’s patients should have disabled parking permits.

She described Crohn’s as “one of many invisible handicaps” and said reasons why someone with Crohn’s could need special parking include arthritis, cardiac issues induced by the disease or medications, and urgency (people with Crohn’s can sometimes have 10 or 20 bowel movements a day, according to Dr. Yamin).

Another discussion about this invisible illness was sparked by a British man who posted photos of the medical devices hidden under his clothing. “Just because I look normal and speak normal, that doesn’t mean I don’t have a major disability,” he wrote.

As for the name of the disease? It dates back to a 1932 report identifying the condition. One of the co-authors was Burrill B. Crohn, MD, who was affiliated with New York’s Mount Sinai Medical Center for most of his career.

Dr. Crohn apparently didn’t want his name attached to the condition, according to his 1983 obituary in the New York Times. “He was among those who felt that the name Crohn’s disease was inappropriate despite its almost universal use. His own preferences were for regional ileitis, regional enteritis or cicatrizing enterocolitis.

“He related once how he had opposed at a conference in Prague a resolution officially designating ileitis as Crohn’s disease. But when he rose to voice his objection, he was ruled out of order and the resolution was otherwise adopted unanimously.”

Dr. Crohn was the author of three books: “Affections of the Stomach,” “Understand Your Ulcer” and “Regional Ileitis.” When an interviewer asked him why he had decided to become a doctor, he said, “Originally, because my father had terrible indigestion. I decided to help him by studying medicine.”