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.”
The good news is that new drugs are on the horizon, awaiting FDA approval, Abreu said. The University of Miami is currently involved in six clinical trials for Crohn’s disease, including one involving placental stem cells, and is also conducting genetic testing research.
“This is a very positive and hopeful time for Crohn’s sufferers,” said . Abreu, adding that one new drug is scheduled to debut in February.
That’s good news for Zachary Sloan. The 26-year-old Wellington lawyer is currently on a clinical trial at UM and says he feels good for the first time since he was diagnosed with Crohn’s at the age of 12.
Sloan has tried nearly every drug and treatment without success, and was even rushed to the hospital and nearly died after one severely allergic reaction to a medication. He also has had surgeries to remove precancerous lesions in his colon and missed his college graduation due to the illness.
“One of the hidden side effects of Crohn’s disease is lethargy and depression,” Sloan said. “Recently I started going to the gym, which is something I never did before. My whole life has changed.”
Tanner has also been successfully treated after visiting doctors “all over the country.” An Alabama native, Tanner primarily moved to South Florida to receive treatment at the Cleveland Clinic. Struggling to find medications that work, he was considering the drastic step of getting his colon removed when he visited a surgeon at the clinic.
Tanner was referred to Palekar, who put him on a cocktail of drugs that he receives by infusion every six to eight weeks. Tanner’s disease is now in complete remission, and he says he feels he’s in good health for the first time since he was diagnosed at age 17.
“I seem to have the right mix,” he said. “Let’s knock on wood. I’m lucky to live in Palm Beach County, not far from the Cleveland Clinic.”
Like many other Crohn’s patients, Tanner has struggled with shame and depression since his diagnosis and has tried to keep his condition hidden. Now, with some celebrities such as former New England Patriots offensive tackle Matt Light going public with their battles with Crohn’s, the disease is starting to come out of the shadows. It is estimated that about one million Americans have Crohn’s or colitis.
“Angelina Jolie was brave and went public with her mastectomy,” Abreu said. “But it’s not glamorous to say, ‘I have diarrhea and I’m running to the bathroom all the time.’ ”
UM gives new patients a quality-of-life survey to fill out that asks questions such as, “How often have you had to cancel outings?”
For Tanner, the disease unquestionably affected his life. He attended the University of Southern Alabama on a golf scholarship and played professionally for two years after graduation. But Crohn’s disease effectively ended his professional golf career because it became too hard to predict when diarrhea would strike.
“I battled depression,” he said. “When you have to go to the bathroom, you have to go to the bathroom. Some days you’re just fatigued.”
Like many Crohn’s and colitis patients, Tanner’s weight fluctuates, from 175 to 155 pounds. On bad days, he would hit the bathroom 20 to 25 times, and on good days, four to six times.
Before his remission, Tanner would use various drugs to control his symptoms. During extreme flare-ups, he would turn to steroid drugs to “calm down” his intestines. Even now, when he knows he will be in a long meeting, Tanner will turn to anti-diarrheal drugs to quiet his nerves.
Abreu has a patient who is a marathon runner and also gobbles up these medicines before a race.
Tanner became a member of the Crohn’s and Colitis Foundation of America, a support group “to have someone to talk to who understands.” He is now married and the father of two young sons.