After suffering from Crohn’s disease for 20 years, Matthew Tanner finally told his friends and work colleagues about his disease six months ago.
“I decided, why should I hide it?” said Tanner, a 37-year-old financial advisor from Palm Beach Gardens. “I think people knew something was going on. After 20 years, I am now just getting comfortable talking about it.”
Crohn’s disease and colitis are part of the spectrum of illnesses classified under irritable or inflammatory bowel syndrome. For reasons not entirely known, the syndrome causes inflammation of the bowel and colon that can lead to symptoms as mild as occasional diarrhea and stomachache to major issues. These can include surgery to remove part of the damaged intestines or repair a fistula, or tear; malnutrition; debilitating fatigue; or up to 25 bathroom trips a day — and occasional embarrassing accidents.
Research has shown that the diseases have a genetic predisposition, and are more common in Ashkenazi Jews, although according to Dr. Maria Abreu of the University of Miami, other ethnic groups are starting to catch up.
However, other studies show that bacteria in the intestines may also play a role in setting the stage for the intestinal conditions. And new studies indicate that large doses of antibiotics administered early in life may even trigger the diseases in some people.
The diseases, typically diagnosed in the late teens or early 20s, are lifelong and incurable. They not only affect patients’ daily lives but increase the chances of colon cancer dramatically, necessitating annual colonoscopies and lifelong medical treatment.
“This disease affects people in the prime of their lives,” notes Abreu of the Elaine and Sydney Sussman Family Crohn’s and Colitis Clinic at UM. “We want people to live normal lives. To do that, we know we have to heal the intestines ... which can resemble road rash inside. We want to make sure we catch people early on, before the intestines are damaged.”
While the diseases are incurable and lifelong, new medicines have made them tolerable and drastically improved patients’ quality of life.
A wide range of medications are used to treat patients, many on a trial-and-error basis. Those with a mild form of the disease can be treated with over-the-counter anti-diarrheal drugs while those with severe cases receive what are known as biologic drugs, steroid medications and immune-suppressants. Some of the drugs are administered by infusion (intravenously). Many were originally intended to treat rheumatoid arthritis and were found to help with Crohn’s and colitis.
“No one drug is able to treat everyone with a complicated disease like this,” Abreu said. “One-third of the patients don’t respond or the response diminishes over time.”
Experts’ current aim is to treat the disease aggressively at the onset of diagnosis, to prevent further damage to the intestines. That wasn’t always the case.
“When I began practicing, we tried top-down vs. bottom-up,” said Dr. Nicole Palekar, a gastroenterologist with the Cleveland Clinic in Weston who specializes in inflammatory bowel disease. “We used to start with a mild drug. Now we realize more aggressive treatment earlier may be better. That’s the current thought.”