Inflammatory bowel disease (IBD) is an autoimmune chronic condition where the body's natural defense system is overactive, leading to inflammation and intestinal damage. The cause of IBD is unknown, but genetics, environment and diet all play a role in the pathogenesis of the disease.
An estimated 1.6 million Americans suffer from the two diseases that encompass IBD — Crohn's disease, which can cause inflammation anywhere in the gastrointestinal tract, and ulcerative colitis, which only affects the large intestine.
While there is no cure for IBD, both Crohn’s and colitis flare-ups can be managed through a combination of therapies. Most patients are diagnosed before the age of 35, and symptoms can range from abdominal pain and diarrhea to developing arthritis and rashes. Patients can experience various complications as part of the disease and sometimes require surgery.
That’s why it takes a specialized, multidisciplinary team to improve IBD patients’ quality of life, says gastroenterologist Hassan W. Hamandi, MD, who leads the Pediatric Inflammatory Bowel Disease Program at UCLA Mattel Children's Hospital.
Dr. Hamandi spoke about how the Pediatric IBD Program at UCLA provides comprehensive and individualized diagnosis for children and adolescents during a critical time of their lives.
What are some of the unique challenges that children and adolescents with an IBD diagnosis face?
IBD is a lifelong illness that manifests itself during a period of critical growth and development. It’s crucial to shut down the disease and put it into remission, so that children and adolescents can go through that stage of development while maintaining a high quality of life.
One of the biggest challenges of an IBD diagnosis is that the disease can look very different from one patient to another. In addition to gastroenterologists, it’s important to have access to other pediatric specialists, like immunologists, rheumatologists, surgeons, psychologists, and nutritionists.
It’s also a time when some adolescents are navigating mental and sexual health issues for the first time, and making decisions about drug and alcohol use, which can all be impacted by their disease.
At what point in their medical odyssey do you typically meet patients? How are they diagnosed and treated?
We see patients from a wide spectrum of disease stages. If a pediatrician or a specialist has a high suspicion of disease — maybe their patient is having recurring fevers or arthritis – they will refer to us to determine whether the gut is the issue. We also see patients who are seeking second opinions or who are new to the area and need to establish care with a new medical team.
Diagnosis usually involves endoscopic evaluation with an upper endoscopy and colonoscopy, magnetic resonance (MR) enterography to provide detailed images of the intestine and colon, as well as blood tests and stool tests.
IBD can be managed through a combination of medications, surgery, as well as diet and lifestyle changes. Since it is an autoimmune disorder, the treatment requires some component of immune suppression, and so many patients receive regular infusions or injections of biologic therapies. The Pediatric Infusion Center at UCLA Mattel Children’s Hospital is a dedicated space for children up to 21 years old to receive outpatient infusions and central-line blood draws.
Some medications that we offer are not specifically approved to treat children, but here at UCLA, we have the clinical volume and expertise to navigate those issues and give patients a tailored, state-of-the-art treatment plan. It’s a constantly evolving field in terms of treatment — there is rarely one right choice and there is shared decision-making with medical team, patient and family.
How does the IBD Program collaborate with parents and caregivers to help them manage their child's disease?
While we stress patient autonomy and preparedness for their transition into young adulthood, we encourage parents and caregivers to participate in shared decision-making. We provide resources for parents to learn about the disease and coordinate educational new diagnosis appointments. Our social worker collaborates with families to arrange accommodations at school and home, and they also screen families for mental health issues.
We also offer parents and caregivers the opportunity to speak with other families who have been through similar experiences. In the future, we also hope to launch family-focused IBD educational seminars.
What sets UCLA’s Pediatric IBD Program apart from other clinics?
In addition to offering an expert, multidisciplinary team of specialists and advanced treatment options, UCLA also has a unique IBD Pediatric-to-Adult Transition Clinic that helps patients who are 18 to 26 years old navigate their evolution into adulthood.
For many IBD patients, their parents have been managing their disease for years. Then, suddenly, it’s on them to make appointments, refill medications, ask questions, and make decisions about their health.
The transition clinic is supported by a team of nurse practitioners, registered nurses, dieticians, psychologists, and social workers. The team helps patients navigate questions like, “How does alcohol affect my disease,” or “How will taking nutritional supplements impact my ability to play a sport?”
While there is no cure for IBD, our ultimate goal at UCLA is to empower children, adolescents, and young adults with medical autonomy, so that they can grow up to confidently manage their disease and lead healthy, normal lives.
