It is never easy to learn that you have a chronic illness, especially as a child. It can make them feel afraid, sad, nervous, or just “different.”
Children with Inﬂammatory Bowel Disease (IBD) face the challenge of an unpredictable and potentially embarrassing disease. They may be embarrassed about their symptoms or frequent visits to the bathroom, and they may fear being the target of the “bathroom humor” that is popular amongst children. In addition to the embarrassing symptoms, short stature and delayed puberty, simply having a chronic illness may contribute to feeling “different” from peers.
Participation in school and social activities may be adversely affected. IBD clearly has the potential to impact psychosocial functioning. Children with IBD appear to be at risk for more difficulties in psychosocial functioning than healthy children, although the problem reaches clinical significance in only a subset.
The difficulty experienced by children with IBD is generally similar to that experienced in other chronic health conditions. In the area of behavioral/emotional functioning, mood and anxiety disorders are most common.
Children with IBD are at increased risk for problems in social functioning, but the nature of their social difficulties is unclear. Mixed results have been found in the areas of family dysfunction and body image, and limited research exists in the areas of stress and coping, self-esteem, and eating problems.
Signs of Difficulty Coping
Watch for any of these behaviors, which may indicate that your child is having trouble transitioning to life with IBD:
• Difficulty sleeping
• Poor eating habits
• Persistent sadness and/or frequent crying
• Lack of interest in usual activities and hobbies
Helping Your Child Cope
If your child seems to be having trouble dealing with his or her IBD, parents and trusted adults can be a great source of comfort and help. Keep the lines of communication open, and be sure to let the child know:
• It’s normal to feel sad or anxious about IBD
• With IBD treatment, most kids lead normal, active lives
• It’s important to talk about your feelings with a parent or a doctor
• Anything you share with a doctor is confidential and private—he or she can’t tell anyone else without your permission
• Kids are different for all kinds of reasons—you’re great the way you are!
A great resource for children and families to track IBD symptoms is “myIBD”. This free app can be downloaded from the app store for use on a handheld device such as iPod/iPad /iPhones or Android Smartphones.
This app has provided a novel way of empowering young patients and their families to come to terms with the diagnosis of IBD. It enables patient-driven learning by engaging children/teenagers and allowing the contemporaneous symptom monitoring and documentation of adherence to prescribed medication. This application has given young patients and their families the opportunity to preview/review the information given during the face-to-face meeting with their physician. The app includes a feature to monitor disease activity and treatment compliance in real time as well as educational videos and links. This has allowed young patients to take control of their symptom reporting, to generate a clinical summary-PDF prior to follow-up in the IBD clinic and to actively prepare for a transition to adult care.