How is IBD different in childhood?
In about a quarter of the cases, Crohn's disease and ulcerative colitis appear for the first time during childhood. Despite the similarities between the disease appearing in childhood and that in adulthood, both presentation and treatment, there are significant differences that distinguish this sensitive population of children.
Cause of the disease:
Environmental and genetic factors are associated with an increased risk of developing inflammatory bowel disease at any age. Possible environmental factors include diet, exposure to "clean" environments with fewer bacteria and microorganisms (e.g., working on a farm associated with lower disease prevalence), breastfeeding during infancy (reducing the risk), smoking, the use of antibiotics in the first year of life (increasing the risk), and the need for the removal of the appendix due to acute inflammation. In recent years, more than 200 genes have been identified that are also associated with an increased risk of developing Crohn's or ulcerative colitis. The combination of the number of problematic genes with the degree of exposure to environmental factors will determine the risk of developing inflammatory bowel disease.
It is known today that the disease appearing in children is strongly influenced by genetic factors since the duration of environmental exposure is shorter. Indeed, among all the genes associated with inflammatory bowel disease, there are genes specifically related to the disease in children. It should be emphasized that genetic involvement in inflammatory bowel disease does not imply that "if you have a bad gene, you will have the disease." Rather, it is the combination of factors that determines the risk. It is entirely possible that a person with a strong genetic predisposition for inflammatory bowel disease will not develop the disease in the end due to the absence of necessary environmental factors.
Location of the disease:
Inflammatory bowel disease in children tends to be more extensive than in adults. In ulcerative colitis, a disease affecting most of the colon appears in about a third of cases in adults compared to 70%-80% in children. Similarly, Crohn's disease, which can affect both the large and small intestine, occurs in about a third of children compared to less than 10% in adults.
Disease severity:
Inflammatory bowel disease that appears at a young age tends to be more severe than the disease that appears in adulthood. Even within the pediatric population, disease onset during infancy is associated with a more severe disease course than in adolescents. It is worth noting that there are many children with a mild disease course and many adults with a severe course, but research comparing disease activity finds that children are expected to have more complications and a more active disease course on average.
Response to treatment:
The response to different medications in clinical trials conducted in children is generally better than in parallel studies in adults. This is likely due to a shorter duration of disease before the start of treatment, resulting in higher treatment efficacy. There is evidence to support the notion that aggressive treatment should be initiated early in the disease's course and not wait for complications to increase the chances of treatment success.
Growth impairment:
One of the most important features in children with inflammatory bowel disease is growth impairment. Stunted growth affects about half of the children who developed Crohn's disease before adolescence, while in ulcerative colitis, growth is usually normal in most cases. Growth impairment is mainly caused by inflammatory mediators produced from the inflamed intestinal lining, which interfere with the action of the growth hormone. Other factors include prolonged treatment with steroids (non-standard treatment) and nutritional deficiencies resulting from absorption problems or poor diet. Some children may catch up on growth during adolescence, so their final height is not affected. However, on average, children with Crohn's disease do not reach their expected height according to their parents' data. Physicians treating Crohn's in children must carefully monitor growth and always consider the findings in treatment decisions. For example, in a child with impaired growth, it is essential to avoid prolonged treatment with steroids and budesonide, add enteral nutrition formulas, correct nutritional deficiencies, and initiate, if necessary, a treatment that encourages growth (including methotrexate, nutrition therapy, Remicade, and even surgery in well-defined situations). Personalized nutritional counseling within specialized centers is essential for the proper growth of children with Crohn's and colitis.
Nutritional treatment:
Nutritional treatment, providing a formula-only diet (e.g., Elecare, Modulen, Pediasure, Neocate, Ensure, etc.) without any other food supplements, is as effective as giving steroids for 7-10 weeks. Moreover, nutritional treatment heals the inflammation of the intestinal lining in most cases, a result that occurs in only a third of cases with steroids (even if there is a significant clinical improvement). For an unknown reason, this treatment is more effective in children than in adults and is especially recommended for those with disease limited to the small intestine rather than the colon. This treatment, though not easy for the child, is particularly attractive when there is poor growth and nutritional deficiencies. Seeking support from a multidisciplinary team that includes a specialist in pediatric inflammatory bowel diseases, a nurse, and a dedicated dietitian is essential for successful treatment and supporting the family during the treatment. This is the only treatment for inflammatory bowel diseases that has proven effective and has no side effects. Recently, Modulen was included in the basket of health services for the treatment of Crohn's.
Quality of life:
Children and adolescents diagnosed with inflammatory bowel diseases are at an increased risk of emotional problems, including anxiety, social stress, loneliness, and guilt. In adolescents, the disease can affect body image (due to slow growth, weight loss, different appearances, perianal disease, frequent diarrhea, and delayed sexual maturation). Additionally, coping with uncertainties, side effects of medications, hospitalizations, and treatments also affect the natural process of finding one's identity within society. Improving the quality of life requires excellent support mechanisms that foster perseverance in treatment. Support groups provide opportunities for patients and their families to meet and share their experiences and fears with other patients. The supportive model developed at the Shaare Zedek Medical Center in Jerusalem includes well-structured groups for parents and adolescents, separate groups, two for adolescents (according to age groups), and one for parents, focusing on disease-related topics. After such intervention, adolescents and parents reported significant improvements in coping with the challenges posed by the disease, reduced negative feelings toward the disease, improved compliance with treatment, and a better way of dealing with the patient's emotional state.
Transition to adulthood:
The treatment of children and adolescents with inflammatory bowel diseases must include a plan for a gradual transition of responsibility for the disease to the child himself. At different ages, the child is expected to know the basics of their disease, the treatments they receive, and later even manage the medication dosage. Toward the end of adolescence, the responsibility for taking medication should be transferred to the adolescents themselves. The process must be embedded in every interaction with the physician so that when the patient reaches adulthood, the conversation naturally focuses on the teenager and not the accompanying parent.
In summary:
A child or teenager with Crohn's disease or ulcerative colitis is not a small adult. Unique considerations necessitate personalized treatment for each individual based on their chronological, physiological, and developmental age. Therefore, there is a significant advantage in monitoring and treating these diseases within a specialized center for pediatric inflammatory bowel diseases, with a multidisciplinary team experienced in the unique age considerations and capable of providing comprehensive and tailored support and information at every stage for the patient and their family.