Monica Weeks was 19 and a freshman in college when her first symptoms appeared.
And it took several visits to different doctors before she was finally diagnosed with Crohn’s disease.
More than five years later, she has a seemingly encyclopedic knowledge of the disease and has learned to manage her condition with infusions of Remicade every seven weeks, alongside eating healthy and exercising.
“People really need to know it can be a debilitating disease, but there are ways to deal with it,” said Weeks, 24, who grew up in Key Largo and now lives and works in Washington, D.C.
Crohn’s disease and ulcerative colitis — both grouped under the term irritable bowel diseases, or IBD — are becoming increasingly prevalent, and doctors don’t exactly know why.
Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract and may affect any part from the mouth of the tract to the anus. Ulcerative colitis, known as colitis, is a chronic inflammatory condition limited to the colon, otherwise known as the large intestine.
The diseases can manifest within a wide spectrum, from very mild to very severe, and they tend to appear either in the teens and 20s, or else later in life, in the 50s and 60s, doctors say.
Nedra Friedman was in her late 50s when she first experienced symptoms of colitis, and she has now lived with it for more than 15 years. Over that time, she has visited several doctors and tried various treatments. But while her symptoms, including a sudden, urgent need to go to the bathroom, used to come and go, in the last few years it has gotten worse. She is now involved in a clinical trial of a new infusion at the University of Miami.
Meanwhile, she stays away from certain foods that trigger her symptoms, such as dairy, and exercises regularly.
She said the disease hasn’t stopped her. She travels and still eats at restaurants — always making sure she is near a bathroom.
“I don’t cater to it,” said Friedman, who lives in Lake Worth. “If I’m having an attack, I will stay home and read a book or knit.’’
Crohn’s and colitis are known to be more prevalent among Caucasians, and particularly among Ashkenazi Jews. But recent research conducted at the University of Miami shows the diseases also affect more Hispanics than previously thought.
Doctors now believe that IBD may be due to genetic predisposition and environmental influences.
One theory for the increased incidence of IBD is that we may be living in too much of a sterile environment.
“Our immune systems, when we are born, are very immature, and they develop as we come into contact with germs and viruses in the environment, and that induces a kind of immune tolerance,” said Dr. Robert Goldberg, a gastroenterologist at Mount Sinai Medical Center and an associate professor at the University of Miami.
In people suffering from IBD, the immune system mistakes benign or beneficial cells and bacteria for harmful foreign substances. When this happens, the immune system can do harm to the gastrointestinal tract and produce the symptoms of IBD, including diarrhea and abdominal pain, according to the Crohn’s and Colitis Foundation of America.
“Any time diarrhea lasts for more than several weeks it needs to be raised in the differential diagnosis,” Goldberg said. “If it is accompanied by fever, weight loss, blood mixed in with stool, severe abdominal pain — those are indications that it is more than diarrhea.”
Among the major advances in treating IBD since the late 1990s, Goldberg said, is the development of biologic agents, which are drugs designed specifically to interfere with certain chemical transmitters related to the inflammatory process. The medications include Remicade, (the generic equivalent is infliximab), Humira, (adalimumab) and Cimzia (certolizumab pegol).
But in interrupting the body’s inflammatory process, the drugs are trying to block the body’s immune system, which can lead to other issues. Still, in the majority of cases, doctors say the diseases can be managed.
For those with severe cases of IBD, and those who haven’t responded to traditional therapy, both the University of Miami and the Cleveland Clinic in Weston have Crohn’s and colitis centers that use a multidisciplinary approach, with doctors from various specialties in addition to gastroenterology, including surgery, radiology and pathology.
“In the past 10 or 15 years we’ve seen a revolution in the understanding of the disease, and a lot of drugs have been released, and we are one of the centers looking at new classes of drugs,” said Dr. Amar R. Deshpande, a gastroenterologist and assistant professor of medicine at the University of Miami Health System.
“There are 100 trillion bacteria in our gut … And there is a lot of work going on to understand the ways in which these trillions of bacteria activate the immune system in those with certain genetic susceptibility,” he said.
Drugs, including those that have been approved and others that are being studied in clinical trials, have different mechanisms to trick the immune system to shut off, Deshpande said.
And at the same time, research is under way to understand the genetic component. So far, 100 genes have been found to be associated with IBD, he said.
Three clinical trials of drugs for IBD are taking place at the University of Miami.
The Cleveland Clinic in Weston is also involved in several clinical trials, including a new drug for Crohn’s disease, said Dr. Nicole Palekar, a gastroenterologist there.
A surgical trial is also under way there for perianal fistulas, which are passageways or connections in the perianal rectal area, which can occur with Crohn’s. Weeks, the young woman living in Washington, first experienced this in college.
The surgical procedure, called a LIFT procedure, has been shown to be effective in other types of perianal fistulas, but had not yet been studied with Crohn’s disease, she said.
Meanwhile, advances have also been made in diagnosing IBD. To make a definitive diagnosis for both Crohn’s and colitis requires a colonoscopy with biopsies, Palekar said.
Doctors are also now using Magnetic Resonance (MR) Enterography, which looks for active inflammation in the small intestine as well as strictures and fistulas, she said.
“Diagnostic testing has evolved over the last several years, and radiographic evaluations have improved over the last five years, using MR enterography to evaluate the small bowel,” she said
Such testing not only provides better images, but also does not require radiation, she said.
“It’s a manageable disease, but there’s a spectrum of patients that based on the severity of disease will have lots of different complications throughout their life,” Palekar said. “That is why it’s important to have a good support network and to go to a center that provides comprehensive care.”