A Look at Pediatric Inflammatory Bowel Disease (IBD)
Editor’s Note: This article was originally written by patient expert Hope Trachtenberg-Fifer.
Although people of all ages are diagnosed with IBD, most cases are diagnosed before the age of 30, and of those, most are diagnosed during adolescence. In fact, IBD has become one of the most significant chronic diseases affecting children and adolescents.
IBD is not new to pediatrics; the first patient Dr. Burrell Crohn and his associates described having regional enteritis, which is now known as Crohn’s disease, was a 16-year-old boy.
It is estimated that 10% of patients with inflammatory bowel disease (IBD) are under the age of 18 years; another 10% of children are diagnosed when they are less than 5 years of age. The disease, in the form of either Crohn’s disease (CD) or ulcerative colitis (UC), can be seen as early as the first month of life. In infants, UC is seen more frequently; however, the peak years of pediatric onset of IBD are in early adolescence, when CD is more common.
The diagnosis of IBD in children is not necessarily difficult if there is chronic diarrhea and bleeding, but if there are other presentations, such as flares of joint pain, diarrhea with no blood, chronic anal fissure, or poor growth without other symptoms, then the diagnosis may be confusing, or even overlooked. Blood tests, endoscopy, pathologic findings on biopsy, and imaging are all used to help make the diagnosis, just as in adults.
Both Crohn’s and ulcerative colitis tend to strike during childhood at an average age of 12 years old. And, just as in adult inflammatory bowel disease, pediatric IBD runs the spectrum from mild to severe disease.
Malnutrition and weight loss can be significant problems in IBD. This is especially so in pediatric IBD. Particularly when presenting in childhood or adolescence, the first noticeable symptoms of the disease can be poor growth and weight loss. Children can actually present with a slow down in growth, having fallen several percentiles on the growth curve, while suffering minimal intestinal complaints. Therefore, growth failure can be the major presenting symptom in pediatric IBD, with insignificant GI manifestations. It believed that a pediatric IBD patient has probably had undiagnosed IBD for about 2 years before clinical symptoms are such that they are questionable, and the child is diagnosed.
The problem of weight loss or impaired growth is probably multi-factorial. It may be due to the body’s increased needs because of chronic inflammation. Or, it can be caused by the inflammatory process itself, where circulating inflammatory cytokines turn off the growth process. Also, upper GI inflammation can cause a false sense of feeling “full,” or signal satisfaction with being finished eating too early in a meal. This is known as early satiety. Your child may appear to have become a “poor eater,” or you might question whether or not he/or she is anorexic. Or, your child may be avoiding–consciously, or not–certain foods that worsen his symptoms when he is flaring.
The small intestine is very long–over 25 feet in most adults who have not had resections–so, for adults with Crohn’s, it is unusual to have such severe inflammation, and so much surgery, that there is an inadequate or insufficient amount of functional small intestine to interfere completely with the absorption of nutrients. But, this is often not the case with severely affected young children.
Since children are most affected in terms of growth and development, the method of early management becomes critical in their long-term outcome.
Multiple immunosuppressive therapies have been successful in controlling CD, including 6-mercaptopurine (6-MP), azathioprine (Imuran), cyclosporin, and methotrexate. Many doctors will try some of these drugs on children with severe disease, who do not respond to more conventional drug treatment.
Several drugs used for treating IBD also affect growth. Corticosteroids in particular, if used long-term, can stop growth. All of these factors, if not controlled, can stunt growth permanently and a fair number of young patients end up shorter than they would have been, not only because of the disease, but due its treatments.
Pediatric gastroenterologists try their best to avoid steroids because the outward effects and growth problems associated with their use are so significant. At the same time, they are often the only therapy to bring about a quick disease response and, in spite of side effects, they are still used quite often.
Nutritional therapy is another important modality, particularly for the treatment of disease activity and growth failure observed in CD. Improvement in nutritional status may be achieved in several ways. Sometimes, once they are made aware of the great importance of fulfilling their nutritional needs, patients are compliant with orally supplementing using, high-caloric formulas. If oral supplementation fails, other means of providing nutritional support include overnight continuous nasogastric feeding, and intravenous feeding (“TPN”).
There are some situations where biologic therapies-- such as Remicade, Humira, or Cymzia–might be appropriate as initial treatment. Children with extensive disease, stunted growth, and/or severe perianal involvement are candidates for initial biologic therapy. Even though, currently, biologic agents are used frequently, most pediatric gastrointestinal doctors are concerned about the longer exposures young patients are going to have compared to adults and are cautious about starting biologic therapies.
IBD can also delay the onset of puberty. Most patients eventually catch up, but the delay can have emotional impact, as can short stature and the near constant need for a bathroom in patients with acute or poorly controlled disease. These issues can impair patients’ function in school and sometimes lead to depression and isolation. If medical intervention does not resolve symptoms satisfactorily, many of these problems can be carried into adulthood and have long-term effects on patients. That’s why it’s a good idea to consider counseling with someone who specializes in working with youngsters who have chronic health issues. The entire family usually can benefit from counseling, too.
IBD is a chronic, pediatric condition, which, optimally, should be treated by an interdisciplinary team of experts, consisting of pediatricians, pediatric gastroenterologists, nurses, nutritionists, and psychologists.
A critical factor in successful management of this disease is the willingness of the patient to learn about IBD, take “ownership” of his or her disease, and participate and cooperate with the team. Patients, parents, and even siblings, must be educated and receive support in order to treat this disease effectively.