As a pediatric gastroenterologist at Atrium Health Levine Children’s, Dr. Tiffany Linville treats young patients with inflammatory bowel disease (IBD), including Ulcerative Colitis and Crohn’s disease, each day. She knows how much these chronic autoimmune conditions can affect their quality of life.
Ulcerative Colitis is a condition that causes inflammation and ulcers (sores) in the colon. Crohn’s disease is an autoimmune condition that causes irritation and inflammation in the digestive tract, particularly in the small and large intestines.
“Inflammatory bowel disease can affect all aspects of kids’ lives,” says Dr. Linville. “Due to the severity of symptoms, most miss school, extracurricular activities, sports and even family functions due to their illness. Symptoms occur during the night as well, so many patients suffer from lack of sleep. Many patients also report that they can’t eat or drink foods they enjoy, as dietary triggers may cause symptoms to get worse early on.”
Because of the private and “embarrassing” nature of their symptoms, many patients feel isolated and don't feel comfortable discussing IBD with friends or family, which may delay diagnosis and contribute to mental health concerns, she adds.
In addition to treating patients in the office, Linville advances the field of pediatric inflammatory bowel disease treatment through her work as board president of the Crohn’s & Colitis Foundation’s Carolinas Chapter.
Innovative treatments for pediatric IBD
“We are incredibly fortunate that, in the last decade, the treatment options for our patients have increased substantially,” says Linville. “The vast majority of patients require what we call advanced therapies. Some of these are given orally, some are injections given at home and some via an IV in an infusion center.”
Additionally, many IBD patients respond well to different diets in conjunction with medical therapy, and a small subgroup responds to diet intervention alone.
“While prednisone [a steriod] tends to help patients feel better quickly, our goal at Levine Children's is to limit steroids as much as possible to avoid the long-term effects associated with steroid use,” she adds.
Pediatric IBD research has paved the way for numerous innovative and effective treatments in the past 10 years.
“Until 2014, there were three advanced therapy options with the same mechanism of action approved for use in IBD patients,” she says. “Since then, 10 different medications, with different mechanisms of action and modes of delivery, have been approved and many more are being studied currently.”
The new therapies are more effective than previous treatments, which means fewer surgeries and a better chance of remission for patients.
“Remission rates for pediatric IBD patients have drastically improved,” says Linville. “In 2006, the remission rate was approximately 40%. Today, it’s nearly 85%.”
Inflammatory bowel disease remission
Once the right therapy has been identified, patients need to stay on the therapy indefinitely.
“We define remission both clinically and endoscopically,” says Linville. “Clinical remission is achieved when patients feel normal and no longer experience any symptoms associated with IBD. Endoscopic remission is the goal for all patients and is defined as patients having normal-appearing endoscopies and colonoscopies. We expect patients to achieve endoscopic remission six to 12 months after the initiation of medication.”
While patients can achieve remission through advanced therapies, it’s important for them to continue to see their provider for regular checkups.
“Unfortunately, IBD is an unpredictable disease process, so it can come back unexpectedly at any time, which is why we monitor our patients regularly at clinic visits, with lab work, stool testing and, sometimes, endoscopy,” she says. “More than 85% of our patients are in remission and we hope to continue to see that number improve as more therapy options become available.”
Improving quality of life for pediatric IBD patients
In addition to exciting new therapies and research, a multidisciplinary approach to care has been a significant benefit for patients. At Levine Children’s, the multidisciplinary team includes:
- Gastroenterologists, including Linville, who oversee patient care.
- Nurse navigators, who guide patients and families through the treatment process.
- Schedulers, who ensure appointments run smoothly.
- Dietitians, who oversee dietary therapies.
- Psychologists, who support patients’ mental health.
- Social workers, who connect patients and families with additional supportive resources.
The team is dedicated to helping patients heal holistically, as IBD can have an impact on a patient’s entire life.
“It truly takes a team approach to achieve the quality-of-life improvements we have seen over the past decade,” says Linville.
Whole-person care is crucial for better outcomes. As many as half of patients with chronic illness also suffer from anxiety or depression. Patients are more likely to achieve remission when a psychologist is involved in their care, says Linville.
Support groups are another excellent resource for IBD patients and their families. Through the Crohn’s & Colitis Foundation, two Levine Children’s patients and their parents launched a virtual and in-person teen support group for IBD patients across the United States.
The future of pediatric IBD care
Linville believes a cure for pediatric inflammatory bowel disease is on the horizon. Until then, she says the advances in treatment options have drastically improved quality of life for her patients.
“Often, when I see patients, they have been sick for quite a while,” says Linville. “Families are frustrated and worried. However, 85% of our patients are in endoscopic remission after treatment. It is so rewarding to see them get better clinically and go on to live completely normal lives, getting back to their friendships, schoolwork and other activities.
Learn more about the inflammatory bowel disease program at Atrium Health Levine Children’s.
