When you think of Crohn’s Disease and ulcerative colitis, the two types of Inflammatory Bowel Disease (IBD), you probably imagine adults coping with the stress, pain and discomfort.
Yet, about 25 percent of the more than 1.4 million Americans with Crohn’s and colitis are children. These young patients often deal with health, developmental and psychosocial challenges that are unique to pediatrics and can be challenging to manage.
Not only that, autoimmune disorders including Crohn’s and colitis are on the rise, increasing the importance of finding new advances in treatment, and educating the parents, school administrators and physicians who care for this young population, said Raghad Koutouby, M.D. [1], pediatric gastroenterologist at Baptist Children’s Hospital [2] and a specialist with GastroHealth Pediatrics.
A Lifetime of Medical Care
Doctors are still learning about what exactly causes and triggers inflammatory bowel disease, and what populations are more prone to having the condition. Right now, there is no known cure. Patients with IBD will likely require a lifetime of medical care.
People with these disorders have a genetic predisposition and an over-responsive immune system to these triggers, which include environmental factors. IBD occurs because a person’s immune system has a consistent over-response to bacteria – good and bad – in the body, explains Dr. Koutouby. In a person without IBD, the immune system reacts to bad bacteria by attacking it. When the bad bacteria is taken care of, the immune system relaxes. In a person with IBD, however, the immune system doesn’t know when to stop attacking. This leads to flare-ups and complications.
The difference between the two disorders is dependent upon where in the body the disease occurs. Crohn’s Disease can affect essentially anywhere along the digestive tract; Ulcerative Colitis generally affects the lining of the large intestine. Another determining factor is how deep the disease goes into the tissue. With Crohn’s Disease, the disease goes all the way through the tissue. Ulcerative Colitis affects just the lining of the large intestine.
Baptist Children’s Hospital Joins “ImproveCareNow” Network
To increase the level of care for young patients, partner with parents and contribute to important national research, Baptist Children’s Hospital [2] in collaboration with GastroHealth Pediatrics, recently joined the ImproveCareNow Network (ICN), a “quality improvement” national network created by doctors to advance care, improve health and lower treatment costs for all children and adolescents with Crohn’s disease and ulcerative colitis. The network allows patients, families, clinicians and researchers to work together to accelerate innovation, discovery and the use of new information. ICN uses patient registries and includes support, promotion of self-management, and auditing of care processes.
Established by the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition and the American Board of Pediatrics, the ImproveCareNow Network includes more than 70 participating centers in over 31 states and London, England, with more than 20,000 pediatric patients. Recognized by the American Academy of Pediatrics, ICN has received prestigious research grants totaling more than $15 million.
One of its accomplishments has been increasing the number of children in remission without the use of new medicines – 78 percent in remission, with 95 percent not taking steroids.
ICN is active in training and in ongoing studies, reporting care outcomes. Baptist Health South Florida is devoting staff time and resources including a research associate to participate in ICN, said Dr. Koutouby who is leading the effort, and about 125 patients and families are being registered with the network.
While we don’t know exactly what causes IBD, researchers believe that genetics and environment are risk factors. Crohn’s and colitis tend to run in families. According to the U.S. Centers for Disease Control (CDC), research has also found that the disorders are more common in developed countries, versus undeveloped countries, urban areas versus rural and northern rather than southern climates. “Westernization”, including diet, smoking and pollution is believed to account for environmental influences.
A Range of Symptoms
Diagnosing anyone, can be challenging, because of the range of symptoms, but the process is often more challenging in children.
“Children’s symptoms are very variable,” she said, “and different children present in different ways.”
The most common symptoms are:
A critical symptom in children can also be slowed growth or growth failure, she said.
“Some people think ‘my child has to have abdominal pain, bloody stools and diarrhea for him to have Crohn’s disease,’” Dr. Koutouby said. “Some don’t have any of those symptoms. Diligent astute pediatricians can be the first step in diagnosing these children by identifying if they are falling off the growth curve and consider Crohn’s or colitis as a possible cause.”
Patients may also experience loss of appetite, weight loss, arthritis-like symptoms, rashes and liver problems, she said.
Through the network, participating families get the latest information and support. They can also attend important conferences along with their doctors.
“We call them family partners,” Dr. Koutouby said. “They have insight into care. We see things from a physician’s standpoint but they see it from a patient’s point of view.”