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41,444 members
Feb 20, 2011

Seeking Families with Young Boys with Permanent Colostomies

This topic is about a mother named Ryan's mom who is seeking to connect with other families who have young boys with permanent colostomies. She appreciates the general support from the forum but is specifically interested in sharing experiences related to caring for her 2½-year-old son. She is looking for advice on issues like pouch wear, wafer changes, and the unique challenges that come with caring for very young children with colostomies.

Here are some suggestions and insights that might help:

1. Although her doctors are aware of similar families in the U.S., she hasn't received any responses to her invitations to connect.

2. She has explored the United Ostomy Associations of America (UOAA) parents’ section but hasn't found any matches. She is hesitant to pay additional membership fees when many groups offer free resources.

3. If she continues to have difficulty finding contacts in the U.S., she is considering reaching out to resources in the U.K.

4. It might be helpful to look at the “Ostomy Australia” magazine, which is published quarterly. Several issues feature stories about baby and toddler boys with ostomies. Past editions can be downloaded as PDFs through a Google search.

5. Consider contacting the Australian groups mentioned in the magazine, such as “Y.O.U. – Young Ostomates United.”

6. Revisit the UOAA parents’ forum, which is free to browse, at https://www.ostomy.org/forum/index.php.

7. Check out the Facebook page “Bad Tummy Foundation” at http://www.facebook.com/pages/Bad-Tummy-Foundation/239714250807 for potential connections with parents of pediatric ostomates.
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