A new center focused on inflammatory bowel disease treats the whole patient.
Melissa Cote started feeling sick a few days after her 40th birthday in 2017. At first, she thought it was the stomach virus making its way around the office. But as the abdominal pain and diarrhea persisted, she worried it was something more serious.
“I thought, ‘Is this what getting old is?’” the Swansea, MA, resident says.
Cote’s primary care doctor was concerned about the symptoms and referred her to gastroenterologist Abbas Rupawala, MD, a physician at Brown Medicine’s Division of Gastroenterology. He reviewed her symptoms
and quickly scheduled a colonoscopy.
Rupawala found severe inflammation that extended into the small intestine, which confirmed a diagnosis of Crohn’s disease. “He said my case was the worst he had ever seen,” Cote says.
Crohn’s can affect the entire gastrointestinal system, starting at the mouth. Symptoms include persistent diarrhea, abdominal pain, weight loss, and fatigue. As her symptoms grew worse, Cote says she was so tired she couldn’t last a full day at work. “I would be in bed by 7 p.m.,” she says.
Then the joint pain started. As the inflammation spread, Cote says, “I couldn’t even wash my hair. If I walked for more than five minutes, I was winded.”
But with a diagnosis and a team of health care professionals behind her, Cote could begin healing.
Rupawala and Sean Fine, MD, both assistant professors of medicine at the Warren Alpert Medical School, established a center for inflammatory bowel disease (IBD) at Brown Medicine in 2017—the first of its kind in Rhode Island.
IBD is an umbrella term for diseases of the gastrointestinal tract, like Crohn’s and ulcerative colitis, that are caused by inflammation. In people with IBD, the immune system attacks food and bacteria as if they were dangerous substances, sending white blood cells to the lining of the intestines and causing chronic inflammation.
The IBD Center is designed around a three-pronged approach: clinical care, research, and education. Care for patients with complex chronic diseases can be fragmented because they require input from a number of different disciplines, and for patients with IBD, time is of the essence.
“The idea is to create a patient-centered medical home,” similar to those for other chronic diseases, like diabetes, Rupawala says. “We want to create a one-stop shop, where we can treat psychosocial issues, nutrition issues, and so on.”
The clinic’s unique focus on IBD is a huge benefit to patients, Fine and Rupawala say, because treatment options are rapidly evolving.
“There are 50 new drugs [to treat IBD]in the pipeline. It’s hard to keep up unless you are totally devoted to learning everything about these diseases,” Rupawala says. With their clinic’s focus and experience, he adds, “we can bring the latest and greatest to patients.”
That’s where research comes in. The IBD Center is also becoming a site to enroll patients in clinical trials. This is a great option for patients, Fine says, “because if they fail available therapies, they’d have to travel to get into new drug trials.” By attracting industry to run trials in Rhode Island, their patients can access them locally.
A 2016 study found that the incidence of IBD in Rhode Island is among the highest in the world, with 30.2 cases per 100,000 people. However, that may be because the state has been better able to record and track patients. Between 2007 and 2012, the state’s Crohn’s & Colitis Foundation had funding from the US Centers for Disease Control and Prevention to establish the Ocean State Crohn’s & Colitis Area Registry. Using data from the registry, researchers were able to characterize the number and demographics of residents who had been diagnosed with IBD, helping them understand how it affects the state.
The third prong is education. It starts with exposing more medical students and residents to the field. Fine and Rupawala are working with current medical residents on research projects related to IBD.
The last step in physician training is fellowship, where clinical specialty skills are honed. Fine and Rupawala plan to develop a fellowship program focused solely on IBD, similar to the one Fine completed at Beth Israel Deaconess Hospital in Boston. That would provide a pipeline of doctors with expertise in IBD.
A HOLISTIC APPROACH
Fortunately for patients like Cote, there are a number of treatments available for Crohn’s. Rupawala started her on an eight-week course of prednisone to bring down the severe inflammation. She takes one immuno-suppressant drug daily and every eight weeks gets an intravenous infusion of another.
While the drugs are keeping her symptoms at bay and a follow-up colonoscopy showed that her colon is healing, Cote says they do come with side effects. She has blood tests every 10 days or so to make sure her liver is not being damaged, and with a suppressed immune system, she has to be careful that she doesn’t get sick. “I have nieces and nephews and if they’re sick I can’t be around them,” she says. “If I do get sick, it could be really bad because I have nothing to fight it.”
Cote says she will eventually be able to stop both medications if her disease continues to improve.
Diet is also an important factor in IBD. When she first became sick, Cote ate only bland foods, and then slowly added normal food back to her diet to see if they triggered symptoms. She worked with a nutritionist for about a year, seeing her every few weeks while they figured out what she could and couldn’t eat. Triggers are different for every patient, but common ones include fatty, fried foods; caffeine; and raw fruits and vegetables.
“I love salads,” Cote says, “but I can’t really eat a lot of raw vegetables.” Cheese and dairy products can also be problematic. Anything high in fiber, like brown rice or whole grains, is impossible for her to digest. “I kind of eat like a toddler now,” she says.
Stress is another factor that can trigger a Crohn’s flare, but that’s much harder to control. A recent stressful situation put Cote in a downward spiral. Alternative therapies such as massage and acupuncture have been helpful in managing her anxiety.
“It’s a complete lifestyle change,” Cote says, yet she remains upbeat and optimistic. “I have Crohn’s disease, but it doesn’t define me. I don’t let it become who I am.”
LIFE GOES ON
That mentality mirrors how Fine and Rupawala approach their patients. “We know they have a whole life outside of this doctor’s office,” Rupawala says. They focus on keeping patients well so that their disease doesn’t keep them out of school or work and interfere with caring for their families.
By focusing only on IBD, Fine says, they can be there at times when patients need closer attention. For example, he says, “I tell my female patients to talk with me as soon as they are thinking about getting pregnant.” For the most part, women can safely stay on their medications through pregnancy, “and we can help guide them through that,” he says.
Another critical time is when young adult patients begin receiving care at the center, which only treats adults, after transitioning from their pediatric gastroenterologists. “We’re working out the best practice model,” Fine says. “We need to allot more office time for them.”
The goal is to ensure that kids are ready to assume responsibility for their own care and that they don’t fall through the cracks.
The patient-centered medical home model will help all patients access the care that is part of successful IBD management. It’s something Melissa Cote appreciates.
“Everything is at the East Providence building,” she says. “The infusion center and lab for bloodwork are on the first floor, my primary care doctor and Dr. Rupawala are on the second floor, and my nutritionist is on the third floor. It’s so convenient.”