Rush launches Gastrointestinal Program for Teens
By Delia O'Hara
Being a teenager is tough enough under usual circumstances — hormonal chaos, social pressure, romantic melodrama, big decisions about the future, keeping your Instagram account up to date, etc. It's much harder for a teen with a medical condition, especially conditions that fall outside the realm of generally available pediatric care.
That's the situation for teens with serious gastrointestinal disorders such as Crohn's disease, chronic genetic disorders like polyposis, congenital abnormalities and functional conditions like fecal incontinence and constipation. Their conditions often begin in childhood — sometimes even before birth — and by the time they reach young adulthood, they may have been through numerous procedures, and have forged strong bonds with caregivers. Once they become too old to see their pediatric specialist, though, many of these patients may stop receiving regular care, which can mean that complications can go undiagnosed and untreated.
"Transition to adulthood is not always as smooth as it should be" for these patients, says Bruce Orkin, MD, head of the Section of Colon and Rectal Surgery at Rush. "There's not a set age for making the transition to adult care, for one thing. It can be anytime between the ages of 15 and 21. It depends on the individual."
To address this problem, Rush recently launched a Gastrointestinal Program for Teens. The program brings together doctors who specialize in treating kids and specialists in gastroenterology, enabling patients to see multiple specialists in a single visit.
"I know of only two other clinics in the country that provide these kind of transitional services, and there isn't another one like it in or anywhere near Chicago," says Orkin, one of the specialists in the program.
Teens will be teens
To see the way in which adult and pediatric expertise in the program combine to meet the special needs of teen patients, consider the case of Connor Ficca: The Oak Park resident was 16 years old when he first presented with Crohn's disease, which causes the immune system to attack a patient's own digestive tract, resulting in abdominal pain, diarrhea and other problems. He's been receiving care from Randolph McConnie, MD, a pediatric gastroenterologist at Rush who often tracks his patients' progress into adulthood.
The last time Ficca realized his colon was backing up, just months after he was diagnosed, the teen kept the knowledge to himself, hoping the situation would resolve on its own — hoping he wouldn't have to spend any more time in the hospital than he already had. His hopes were in vain. Ficca wound up in the hospital with sepsis, a life-threatening condition. He ultimately needed three surgeries to diagnose and treat his condition.
Children with inflammatory bowel disease are a far more complicated patient group than adults, notes Sri Pillai, MD, a pediatric surgeon at Rush who was one of the doctors who operated on Ficca. “Most of these kids will need further operations, which makes the planning of their early surgeries so critical,” he says.
“We have to always be aware that every time an operation is needed, more intestine may be removed, which may lead to issues with absorption and malnutrition in the future. Thus, our goal is always to perform the minimal surgery necessary to maintain growth and development,” he continues.
McConnie and Pillai also are among the specialists in Rush's teen gastroenterology program, all of whom have extensive expertise with serious gastrointestinal conditions that occur in children or adults.
Understanding teen turmoil
After spending much of six months in the hospital off and on, Ficca has been doing well. He made up all the class work he had missed to graduate from high school on time. Now 20, he attends Triton College in the western Chicago suburbs, works part-time as a private caregiver and volunteers at a food pantry.
His mother, Lynda Ficca, is grateful to have found McConnie and Pillai. "Connor got spectacular care," she says.
For a teenager with Crohn's disease, "it's hard on a lot of levels," not least on his emotions, she says. All the people Connor worked with at Rush "understood those stresses. He was able to talk to them about a lot of that. They were so compassionate with this poor kid."
In addition to the medical staff, the new Gastrointestinal Program for Teens includes social workers, psychologists, nutritionists and genetic counselors as needed, and physical therapists who specialize in treating children with functional GI disorders.
"It helps if someone is on hand who understands what the patient has been through," Orkin says. "It's an incredible resource, to have a support group all organized in one place."