When Your Child Has Inflammatory Bowel Disease
You have helped your child with medications, diet, and lifestyle changes to manage inflammatory bowel disease (IBD). However the greatest issues they 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, shame over having IBD, worries about their health, frustration with the limits imposed on them by the illness, and being rejected or teased by other children. There are ways to help your child cope.
Your child may be worried about their symptoms, as well as the disease itself. The worst fears may be the result of not knowing enough about the illness. Reassure your child that they're not at fault for their illness. Some signs of difficulty you may see are:
- Poor eating habits
- Not following the treatment plan
- Sadness, frequent crying, and loss of interest in activities, which may be signs of depression
Your child may know a chronic disease must be managed throughout life, but remind them that IBD doesn't have to slow them down. Let them know they're not alone and they will live a normal life like other children. Here are some tips to set your child on the right track.
When your child is feeling down or thinking too much about their disease and its restrictions, acknowledge their feelings. Help them to focus on their strengths, talents, and other assets. The disease does not define who they are.
Although it is normal to feel upset or unsure about IBD, it should not guide other thoughts or feelings. Activities that may help manage stressful times include:
- Regular exercise can boost moods, help refocus attention, and allow your child to be with other children on sports teams.
- Find a hobby that is enjoyable.
- Create a strong network of supportive people, like friends, teachers, family, or health care professionals.
Another good way for your child to forget their own troubles for a while is through helping others. Encourage them to help you cook a meal, plant a garden, or run errands for a person in need.
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. Your child has a right to all of their feelings. Feelings should not be labeled as good or bad.
One way you can help your child deal with their feelings is to listen to them and offer support. Try to get at the root of their emotions and see if the problem can be solved.
Encourage your child to talk about their feelings with you or your spouse, a sibling, friend, teacher, healthcare provider, counselor, or any other trusted and supportive person. Remind your child that there are ways for them to control the disease and controlling it can reduce the chances of flare ups.
It may help your child to join a support group. People (especially in the same age group) with similar experiences can often be helpful make your child feel less alone.
At times, your child may have negative thoughts, like feeling as if they caused the illness. Reassure them that they're not at fault for their condition. You can help your child to accept IBD by getting them to focus on how they're going to handle it. As your child gets older, give them more control over medications, diet, and managing the the day to day aspects of the disease.
If your child is a teenager and feels more comfortable about it, they may want to inform others in their life about what is going on. It's not unusual for other teens to start asking questions, and it may be easier to open up to friends. How much your teen wants to share is up to them.
Help them to stay positive and think about long-term goals and dreams. Here are some other things that may make your child feel better:
- Get enough rest, even between flare ups.
- Stick with the diet that works. Know what foods make them feel good and bad.
- Take medications as directed all the time.
- Keep seeing the doctor on a regular basis.
It is important for your child to feel there is control, but sometimes that may not be possible. Part of help is getting them the support they need.
Meeting With School Staff
A positive experience at school increases your child's self-esteem, sense of accomplishment, and happiness. You can help increase the chances of having a positive experience at school by making ongoing contacts (preferably in person) with their principal, teachers, and other school staff so that they are aware of any specific needs.
Specifically, school staff will need to be educated about your child's IBD, medications, diet, emotional and physical stress, emergency situations, absences, or need for 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 the condition.
If you are at ease talking about IBD openly, your child will likely feel more at ease sharing information about it. This can help them to handle the fears and questions of their peers, who, once better informed, may not be so apt to tease or avoid them. However, your child should be encouraged to share knowledge and feelings about their illness only to the degree to which they feel comfortable.
You can help by having the doctor talk to your child about symptoms, treatment, side effects of treatment, and what your child can do to feel more in control. Also, take advantage of information available on Internet (use reliable and trusted websites) and contact national organizations that can provide resources and support.
Crohn's and Colitis Foundation of America
National Digestive Diseases Information Clearinghouse (NDDIC)
The College of Family Physicians of Canada
Crohn's and Colitis Canada
Children and young peopel with IBD: A guide for schools. Crohn's and Colitis UK website. Available at: http://www.crohnsandcolitis.org.uk/Resources/CrohnsAndColitisUK/Documents/Publications/Booklets/IBD%20in%20Children%20-a%20parents%20guide.pdf. Accessed August 4, 2016.
Crohn disease in children. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed. May 16, 2016. Accessed August 4, 2016.
Inflammatory bowel disease. Kid's Health—Nemours Foundation website. Available at: http://kidshealth.org/parent/medical/digestive/ibd.html. Updated May 2013. Accessed August 4, 2016.
Inflammatory bowel disease. Help and Hope for Children with Digestive Disorders GI Kids website. Available at: http://www.gikids.org/content/7/en/IBD. Accessed August 4, 2016.
Teen guide: Dealing with Crohn's and colitis. Crohn's and Colitis Foundation of America website. Available at: http://www.ccfa.org/resources/teen-guide.html. Accessed August 4, 2016.
Ulcerative colitis. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed. Updated July 10, 2016. Accessed August 4, 2016.
Last reviewed August 2016 by Michael Woods, MD Last Updated: 10/24/2014