When Your Child Has Inflammatory Bowel Disease
You've helped your child make adjustments to medications, diet,
and certain lifestyle changes to manage
inflammatory bowel disease
(IBD) . But the greatest challenges he may have to contend with are
the social and emotional challenges that come with having a chronic
illness.
In particular, your child may be struggling with concerns about being "normal" and fitting in, embarrassment and shame over having IBD, worries about his health, frustration with the restrictions and limitations imposed upon him by the illness, and being rejected or harassed by other children. How can you help him cope?
Managing Worries
Your child may be worried about his symptoms, which can be painful, as well as the disease itself. His worst fears may be due to the fact that he doesn't understand or know enough about his illness.
You can help by having the doctor talk to your child about his symptoms, treatment, the side effects of treatment, and what he can do to feel more in control of his IBD. Also, take advantage of information in your library and on the web, and contact national organizations that can provide resources and support.
Building Self-esteem
When your child is feeling down, or thinking too much about his disease or his restrictions, acknowledge his feelings and help him to focus on his strengths, talents, and other assets.
See that he gets involved in school activities (those which allow him to manage his IBD without embarrassment) as much as possible. Any activities at school or in the community that allow him to explore his interests and show his talents can help.
Another good way for your child to forget his own troubles for a while is through helping others. Encourage him to help you cook a meal, plant a garden, or run errands for an elderly person.
Helping With Feelings
Children with IBD experience a variety of emotions: anger, fear, sadness, resentment, and embarrassment, as well as joy and pride when they overcome the obstacles of their illness and reach goals. It's important for your child to know that he has a right to all of his feelings, and that feelings shouldn't be labeled as "good" or "bad."
One way you can help your child deal with his feelings is to listen to him and offer support. Don't tell him to stop feeling sorry for himself or that he "should be happy." When you affirm all of his feelings, he will feel better understood and more self-accepting.
Encourage your child to talk about his feelings with you or your spouse, a sibling, friend, teacher, healthcare provider, counselor, or any other trusted and supportive person. There are other ways he can express emotions as well, such as through art or journal writing.
Self-nurturing
At times, your child may be consumed by negative thoughts, like feeling as if he caused the illness. Reassure him that he is not at fault for his condition. You can help your child to accept IBD by getting him to focus on how he's going to handle it. Help him to stay positive and think about his goals and dreams. Family, friends, hobbies, playing with a pet, or taking a walk can help lift his spirits. Help him to feel empowered with positive self-talk.
Meeting With School Staff
A positive experience at school increases your child's self-esteem, sense of accomplishment, and happiness. You can help increase his chances of having a positive experience at school by making ongoing contacts (preferably in person) with his principal, teachers, and other school staff, so that they are aware of his special needs.
Specifically, school staff will need to be educated about your child's IBD, medications, diet, emotional, and physical stress, emergency situations, absences, and access to a private bathroom. Also, make the staff aware of the potential for your child to be alienated or harassed by other students because of his condition.
Helping With Communication Skills
If you are at ease with talking about IBD openly, your child will probably feel more comfortable sharing information about it, as well. This can help him to handle the fears and questions of his peers, who, once better informed, may not be so apt to tease or alienate him. However, your child should be encouraged to share knowledge and feelings about his illness only to the degree to which he feels comfortable.
Resources:
Crohn's and Colitis Foundation of
America
http://www.ccfa.org/
National Digestive Diseases Information Clearinghouse (NDDIC)
http://digestive.niddk.nih.gov/index.htm
CANADIAN RESOURCES:
Canadian Association of Family Physicians
http://www.cfpc.ca/
Canadian Public Health
Health Unit
http://www.phac-aspc.gc.ca/pau-uap/fitness/
Last reviewed January 2009 by Kari Kassir, MD
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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