How to Talk to Children About Their IBD Diagnosis

B.S. Dietetics, Dietitian, Health Professional
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Explaining to your child that they have been diagnosed with IBD can be difficult, and choosing the right words depends a lot on their age. For example, older children may be better off knowing more information because taking some control over their own care can be empowering. Taking this approach with a younger child may scare and overwhelm them — especially if their only reference for a hospital is something scary like when a grandparent passed away.

While it’s important not to give more information than is age appropriate, children as young as preschool age should be given some information about their illness. Not telling them just leaves it to their imagination, which can be very hard for them to process and may even make them scared.

Keep calm and keep it simple

Be sure to get a handle on your child’s diagnosis and what it means before talking to them about it. Whatever you do, don’t freak out in front of your child. They are going to follow your lead. I was told: “Happy mommy, happy child,” and it’s proven true so far. If that means talking to the doctor on your own, then so be it. Often the doctor can help you provide an age-appropriate explanation about the IBD diagnosis and the treatment plan to follow.

Simple explanations might go like this: “Sometimes your tummy will feel bad, like when you have a tummy bug. You aren’t contagious, so no one else will catch it. It may mean you spend a lot of time in the bathroom some days, or even feel like being in bed. But we have great doctors who are going to help us with medicine and deciding which foods you can eat to help you feel better.”

Empower your teenagers

Most teens can understand and process the information their doctor is giving them. It may even help them to have ways to feel in control of their disease, like keeping a journal of their symptoms, starting a blog about their disease, and being responsible for their own medications when appropriate.

Remember: You are transitioning your teen into adulthood, and you want them to be comfortable talking about and controlling their disease when they move away from home. It can help your teen to prepare an answer ahead of time for nosey people who may ask why they miss so much school or are in the bathroom a lot. Roleplay different scenarios if need be.

Make a plan with your school

Your child may need accommodations or miss a lot of school. That is when a 504 plan comes in handy. A 504 plan is a part of the Rehabilitation Act of 1973. The act prohibits discrimination based upon disability. The 504 plan goes on to offer accommodations for children who have an impairment that substantially limits major life activities and, thus, their ability to learn. IBD is considered such a disability because it impairs digestion among other things.

Most schools will have one person in charge of administrating the 504 plan process. Often it is the school principal or counselor. If you have questions about whether this plan might be beneficial for your child, get in touch with your child’s school and set up a meeting to discuss your concerns.

Watch for depression

Having a chronic illness can be rough for an adult to process, let alone a child. When a child finds they have to do things differently than their peer group, get teased because of their illness, or feel ostracized, that can make it even harder on them.

If you can find a support group in your area it may help. If you find that your child is isolating from friends or not following the doctor’s instructions for medications or diet, contact your medical professional.

See more helpful articles:

6 Ways to Prepare for an Ulcerative Colitis Flare

Doctor Q&A: How to Manage Ulcerative Colitis

Sleep and Diet Changes May Help IBD Patients