Some say it takes a village to raise a child. When it comes to inflammatory bowel disease (IBD), our patients and their families depend on a “village” of caregivers — gastroenterologists, nurses, dietitians, social workers and more — to carry them through their journey.
In honor of World IBD Day, May 19, we are celebrating the patients who inspire us and the dedicated Inflammatory Bowel Disease Center team that diagnose, educate and treat nearly 1,500 patients with Crohn’s disease and ulcerative colitis each year.
Defining the disease and finding life-changing treatment
When Camden was diagnosed with Crohn’s disease, he had excruciating stomach pain, was losing weight and had a rare form of the disease called orofacial granulomatosis (OFG) — a chronic inflammatory condition of the mouth that often causes mouth sores.
Today, the soon-to-be, high-school graduate is in full remission and visits with his IBD team every six weeks for intravenous infusions of a medication.
“I love Dr. B,” says Camden who is attending Duke University to pursue a career in engineering. “I’m getting top-notch treatment from caring experts at one of the best hospitals in the world. I have practically hit the lottery.” Read Camden’s story.
Traveling thousands of miles but feeling at home
Two-year-old Gassen is a native of Bahrain, a small island country east of Saudi Arabia. In 2013, she and her parents, Tariq and Manal Boabed traveled 6,400 miles to Boston Children’s Snapper Laboratory for life-saving care for a rare and debilitating condition called very early onset inflammatory bowel disease (VEO-IBD).
The condition, which affects infants and children under 5, causes severe abdominal pain and bloody diarrhea, and slows growth. The cause of VEO-IBD remains unknown, but likely includes a combination of genetic and environmental factors.
Dr. Scott Snapper, director of the Inflammatory Bowel Disease Center and Basic & Translational Research Program, and colleagues are spearheading a new clinical research program and leading the International Very Early Onset IBD Consortium.
Although the family is so far from home, Gassen enjoys her time with the team that cares for her. “Gassen loves the nurses and doctors,” Manal says. “When we leave the hospital, she wants to go back to the hospital to see her friends.” Read Gassen’s story.
The nursing-social work connection
Eleven-year-old Jenna was diagnosed with ulcerative colitis three months ago and is managing her condition with medication. In addition to treatment, she says there are two other important aspects of her care: education and comfort.
“The doctors and nurses make me feel comfortable,” Jenna says. “They are nice and take the time to explain everything, especially the big words that can be confusing.”
Jenna visits with her IBD Center gastroenterologist regularly but is under the watchful eye of several IBD caregivers — her nurse practitioner and social worker.
“We try to have all newly diagnosed patients meet with a nurse practitioner and social worker at diagnosis, so we can address many topics from how IBD affects our patients on a social and emotional level to its impact on family and school,” says Jahna Goldmore, an IBD Center social worker.
Nurse practitioner Caitlin Dolan says caring for patients compassionately and holistically is what makes Boston Children’s special.
“With IBD being a chronic illness, we see our patients every few months and really get to know our families,” she says. “I love hearing about vacations, school, proms, graduation and transitioning to college.”
The power of nutrition
Properly managing IBD symptoms goes well beyond medical treatment — it also includes diet and nutrition.
“We start with education and move onto translating diet and nutrition information into meal plans and creating strategies to help our patients improve their health,” says Karen Warman, an IBD clinical nutrition specialist.
When working with children, adolescents and teens managing IBD, the personalized nutrition plans are dependent on symptoms, changes in health, age, activity level and other factors.
“I find it exciting to empower young people to make healthy diet changes that will help them feel better,” says Sophie Burge, also a clinical nutrition specialist in the IBD Center. “Each patient is different and we enjoy providing individualized nutrition plans for them.”
IBD research: Saying ‘cure’ is not fantasy
Our scientists are working to determine exactly how the immune system and gene-environment triggers impact IBD and are discovering the causes of and improving the treatments for Crohn’s disease and ulcerative colitis.
“Because of the research we are doing at Boston Children’s, we are actually at the point of personalized care, or precision medicine, for IBD patients,” says Snapper. “Today, saying, ‘cure’ is not fantasy. We are and will continue to get to cures for our patients.” Learn more about Boston Children’s research.