Updated: Dec 2, 2022
By: Barbara Storch
Parenting a child with IBD can come with some unique considerations. You may find yourself asking some difficult questions.
“How can I help make sure their IBD doesn’t hold them back?”
“How can I help make sure they are supported academically and socially?”
“What can I do to help make sure they can still have the future they want, or the future I want for them?”
While these questions don’t have easy answers, this guide is intended to help you think through some ways to support both you and your child.
One thing that can be supportive for children with IBD is to have school accommodations in place. A common concern is about how IBD may affect your child's ability to participate in school (frequent bathroom breaks, missing school for infusions or doctor's appointments, etc.). To address these concerns, many families create a 504 plan.
A 504 plan’s aim is to make sure your child’s educational needs are being met specifically within the context of having IBD. As such, a 504 will include specific accommodations (sitting close to the door for bathroom access, extra time on assignments/tests if needed, specific private bathroom, etc.) to help your child succeed. To learn more about what accommodations may be useful for your child, check out this fact sheet from the Crohn’s and Colitis Foundation. You can also find a template for creating a 504 plan here.
If your child has existing accommodations (either an IEP or a 504), consider reaching out to the school counselor at your child’s school to see how you can continue your previous accommodations smoothly and update the existing plan to include accommodations that are supportive for your child’s IBD.
As your child begins to adjust to life with IBD, one thing they may come up against is needing to know where bathrooms are at the places they frequent.
To learn more about bathrooms your child has access to, and to download a bathroom card that shows your child has a medical need to use the bathroom, please check out this page from the Crohn’s and Colitis Foundation. There is also an app that can help you find bathrooms near you and can store your child’s restroom access card.
There shouldn’t be much at all that your child can’t do because of their IBD! Maintaining an active lifestyle has been shown through research to be helpful for children with IBD. You can think through with your child what activities they want to begin, or stay involved with, and how these activities can be flexible. For example, can the activity be flexible depending on the severity of symptoms? Or is the activity one where frequent bathroom breaks can be taken if needed?
If your child finds that their IBD symptoms get in the way of being physically active, taking a step back until symptoms stabilize may be a good idea. You can think about other ways they can engage with their interests and passions. If you have any questions about what forms of activity would or would not be supportive for your child, please consult with their treating physician.
How IBD affects your child’s social life may depend on the age at which they were diagnosed. Research suggests that on average being diagnosed younger may make it easier for youth to work in IBD to their identity and view of themselves and that being diagnosed in adolescence may pose more of a challenge.
Considering and supporting your child’s social functioning is important. Don’t hesitate to talk to your child about how things may be going for them socially.
In addition, many children and adolescents may enjoy being able to socialize with other people their age who also have IBD. There are summer camps only for children with IBD such as Camp Oasis, as well as support groups for young people with IBD that go on throughout the year, that your child may be interested in. You can use this support group finder to locate support near you.
Mental Health: Your Child’s
Having a diagnosis of IBD can be complex for a child or adolescent. This can take a wide variety of forms and some children will have trouble adjusting to a diagnosis and deal with periods of anger, grief, or worry.
Try to practice intentionally asking your child how they are doing emotionally. Doing this in a natural way for you is always a wonderful choice. If you are feeling hesitant about how to bring things up, you can try using these steps:
Let them know it makes sense for them to be feeling how they are feeling. “A diagnosis of IBD can be a lot to deal with. It would make a lot of sense if you are feeling anxious, depressed, nervous.... (insert anything you think might be going on here.)”
Ask them openly and nonjudgmentally about their experience.
“Can we take some time to check in about how you’re feeling?”
“Have you been feeling _____?”
“Is there anything that’s coming up for you lately that feels difficult to handle?”
“Is there anything I can do to support you?”
Wait for them to answer. It can be tempting to jump in but try to ask the question and then give your child the space to breathe, consider, and respond.
For some, difficult feelings such as anxiety or depression may develop and begin to interfere with everyday functioning. If you feel this may be the case for your child, reach out to a member of your Resilience Team to discuss options for support.
Mental Health: Yours!
Parenting a child with a chronic illness can also be challenging. Indeed, research shows that that caregivers of youth with IBD experience more symptoms of burnout (exhaustion, fatigue, etc.) than caregivers of children without a chronic condition.
So, while it may not always feel like a priority, please don’t forget to also consider and prioritize your own health and well-being. Practicing self-care can take many different forms and doesn’t always have to take a tremendous amount of time or money. If you have a harder time generating what self-care may look like to you, consider some of the following strategies:
Checking in with yourself once a day and asking, “how am I really doing?”
Taking a mindful moment to breathe and notice your surroundings
Doing something that brings you joy (reading, drawing, watching a favorite TV show, creating something)
Speaking with a loved one via phone, text, or FaceTime
Moving your body in a way that feels supportive to you
Asking for help
Finding a therapist or a support group to help you create a designated safe space to talk about your feelings
This brochure from the Crohn’s and Colitis Foundation has even more information for parents. Don’t hesitate to check it out if you want a deeper dive.
Remember, Trellus Health is here for your loved one at every step in their IBD journey by helping them build resilience to handle whatever challenges come their way.
Resilience for IBD is Resilience for Life!™