(0-3yo)
Advice for Parents and Caregivers
Be prepared—have all supplies available and all material prepared and ready to go before starting a pouch change.
Stay calm—your child can sense when you are anxious so staying calm will help them stay calm.
Be aware of your facial expressions as your child can tell when you are upset, fearful or anxious.
Try not to be over-protective. Although your child has an ostomy they need to be allowed to live as normally as possible and participate in as many activities as possible as other children of the same age.
It is ok to mix and match products from different companies (Make sure they are compatible).
Support & Resources:
Websites
American College of Surgeons Pediatric Ostomy Home Skills Program
https://www.facs.org/education/patienteducation/skills-programs/ostomy-program
This site provides written and video content to master ostomy care at home.
Shadow Buddies: Ostomy Buddy Scoop Sheet
https://shadowbuddies.org/wp-content/uploads/2016/06/OSTOMY
Shadow Buddies Foundation is a non-profit organization that provides condition-specific dolls designed to help normalize medical conditions for children. There are over 30 different Shadow Buddies including a “Pre-op Buddy” to help prepare children for surgery. The Ostomy Buddy comes with a stoma and a pouch. Ostomy Shadow Buddies are sponsored by Hollister, Inc. Call for more information 1-888-808-7456. Shadow Buddies also offers activities such “Pink Parties” and “Superhero Parties” for boys and girls with medical conditions.
Ostomy supply company educational materials:
Coloplast: Life After Your Child’s Ostomy:
https://www.coloplast.us/Global/US/Ostomy/Life%20After%20Your%20Child’s%20Ostomy%20Surgery.pdf
ConvaTec: Caring for a Child with an Ostomy: https://meplus.convatec.com/article
Hollister: https://www.hollister.com/en/ostomycare
**There are videos on Youtube that parents can visit. Many parents have posted videos on how to change the pouching system.**
Support belts and pouch covers:
Benik ostomy belts: https://www.benik.com
Ostomy Armor: https://ostomyarmor.com
Gus Gear: https://gusgear.net
Nu-Hope Labs: https://nu-hope.com
Hope, support, and finding community
Parent Stories
Contact Us
United Ostomy Associations of America
P.O. Box 2293
Biddeford, ME 04005-2293
Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm EST. If you have an emergency, please dial 911 or contact your local medical professional.
Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice. Visit UOAA Virtual Ostomy Clinic provided by The Wound Company for non-emergency, virtual ostomy support.
Latest News:
Steve Hubbard’s Ostomy and Crohn’s StoryApril 25, 2024 - 11:25 am
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Why Larry David’s “Colostomy Bag” Curb episode is making me speak out about my ostomy after 48 yearsMarch 28, 2024 - 10:43 am
Osmani Gonzalez’s StoryMarch 12, 2024 - 12:20 pm
Ostomy Advocates Taking Action in Washington, DC for Digestive DiseasesMarch 8, 2024 - 4:14 pm
