Ask your child what is working well for them about their life with an ostomy and see if you can work together to make things easier or better for them.

• Are there things we can do to make it easier to change your ostomy pouch. Ask your child what information they are comfortable with you, to share with others about their health. It might not always be possible to respect their wishes, but this can be a good start for understanding how best to respect their privacy.

Encourage your child to participate in visits with healthcare providers by letting them answer questions first and filling in details if needed:

• If your child is nervous to talk with strangers, practicing what they want to say before appointments can be helpful.
• Practice asking questions~ have the healthcare provider talk to your child and then you.

Write notes about what you would like to address with providers before going to appointments or calling. Schedule time for you and your child to talk about your feelings in a safe, non-judgement space where you can both share and learn how the other is feeling (you might not always have the same feelings or understand each other’s feelings and that’s okay! It is much easier to respect someone’s feelings when you are aware of them).

It’s okay to feel great OR really bad about the ostomy and that can change often.

Try to join a support group! Email pediatric.ostomy@gmail.com to learn more about Pediatric Ostomy Group Support (POGS) that meets on Zoom once per month for parents and kids.