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Jul 23, 2013

19 and Seeking Peers with Similar Experiences

This topic is about a young person, just 19 years old, who has had an ostomy since they were a baby. They are looking to connect with others their age who also have an ostomy. Here are some suggestions and insights that might help:

- Start by checking out local ostomy support groups. While many attendees might be older, these gatherings can still offer valuable conversations and shared experiences. Sometimes, younger people do attend.

- Reach out to your stoma nurse or hospital clinic for information on groups specifically for younger people in your area. In the UK, there are groups for young ostomates, but they are often promoted through healthcare professionals rather than public advertisements.

- If there isn't a "young adults" subgroup in your area, consider starting one yourself. There might be other young people who are also looking for such a group.

- Explore online communities where young people with ostomies connect:
- Ostomyland discussion board: http://www.ostomyland.org/ostomyboardipb/index.php
- UOAA (United Ostomy Associations of America) forums: https://www.ostomy.org/forum/index.php and the “Young Adults” section at https://www.uoaa.org

- National conferences, like those held by UOAA, are great opportunities to meet others aged 15 to 25. Attendees have even talked about creating a dedicated youth network.

- If you're in Australia or New Zealand, you can look into these resources:
- Australian Council of Stoma Associations: http://www.australianstoma.com.au (support-group directory)
- Australian Ostomy Support Group Page on Facebook: https://www.facebook.com/AOSGP/
- Federation of New Zealand Ostomy Societies: http://www.healthpoint.co.nz/.../federation-of-new-zealand-ostomy-societies/
- Ostomy Canterbury NZ: http://www.ostomycanterbury.org.nz/

When a mother of a 9-year-old with an ostomy joined the conversation, additional advice was shared:

- Pre-adolescents often face challenges with body image. Connecting with other children who have ostomies, whether in person, through support groups, or by watching peer stories on YouTube, can help reduce feelings of isolation.

- Talk to the child’s healthcare team about starting or joining a pediatric or young-persons’ ostomy group.

- Home management options like irrigation, which should only be done with medical guidance, might help the child feel more in control.

- Encourage the idea that having a stoma doesn't prevent participation in normal school and recreational activities. Seeing peers who are active can be very encouraging.

- If there are signs of depression or anger, consider seeking counseling or psychological support.
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