Occasional stomach aches are part of life. But when they continue for more than a few weeks, come back often or are accompanied by bloody stools and additional symptoms, the cause could be inflammatory bowel disease, or IBD.
IBD is not to be confused with IBS - irritable bowel syndrome - which can also cause both children and adults to experience persistent stomach aches, pain and diarrhea.
"With IBS, you don't typically find blood in the stool," says Dr. Marc Schaefer, a pediatric gastroenterologist who specializes in IBD at Penn State Hershey Children's Hospital.
When a type of IBD known as Crohn's disease occurs in children, it can affect their ability to grow, both in height and weight. Schaefer says a child who doesn't want to eat, fails to gain - or even loses - weight and has a lot of stomach pain with diarrhea or bloody stool should be evaluated.
"Growth charts are one of the most important things we look at with children because sometimes a slower growth rate is the only sign of IBD, especially with Crohn's disease," he says. Doctors also use blood tests and endoscopy to diagnose as well as distinguish Crohn's from ulcerative colitis, another type of IBD that produces rectal bleeding.
The cause of IBD is still a mystery, but it has been found that family history plays a role.
"If a family history of IBD is present, there is an increased risk for a child to get it, but it's not definitive," says Dr. Tolulope Falaiye, also a pediatric IBD specialist at Penn State Hershey. "It is difficult to predict."
Some people with IBD find that certain foods or a stomach bug can trigger their symptoms, but Falaiye says there is no special diet that cures it. Treatments include medications in pill, oral liquid, injection or infusion form as well as enemas. In one unique group of patients who suffer from ulcerative colitis, removing the colon can cure the condition.
"We really individualize the treatment and tailor it to each patient," Schaefer says. "We have to factor in results of endoscopies as well as the severity and behavior of the disease. What might work for one patient may not be best for another."
Penn State Hershey is part of a national network that works to elevate care for pediatric IBD patients. The pediatric IBD program pulls together doctors and specialists in nutrition, social work and clinical psychology to support patients living with the disease.
An IBD transition clinic helps children move smoothly from pediatric care to management of their disease as an adult.
"There are a lot of things they need to start doing for themselves and the transition clinic really highlights for the family the changes that are coming," Falaiye says.
Symptoms and severity of IBD can vary widely, even within families. Some manage to control their condition for a long time after the initial flare up, while others have recurrences.
"We always tell families it is a lifelong condition," Schaefer said. "Even if they are doing very well, they need lab work and endoscopies for monitoring."
Coping strategies and resilience can boost quality of life for parents raising disabled children