This topic is about the importance of volunteering to provide peer-led practical and emotional support for people living with an ostomy. The idea is that those who have firsthand experience with an ostomy can offer invaluable insights and support to new ostomates, something that healthcare professionals who haven't lived with an ostomy might not fully provide. Here are some key points and advice from the discussion:
1. Emotional support is often lacking:
- Many people feel isolated after surgery, especially if hospital staff seem uncomfortable dealing with the pouch. Peer visitors can help reduce this feeling of isolation.
- An ostomy nurse who is also an ostomate was able to recognize a patient's depression and suggested seeing a doctor for antidepressants and counseling.
2. Positive hospital model:
- In Newcastle upon Tyne, UK, new patients are paired with a nurse who has lived with an ileostomy for 20 years. She offers practical tips, like what to include in an emergency kit, how to wear a pouch under a swimsuit, and detailed cleaning and application routines. She also provides follow-up phone support months later.
3. Volunteer pathways:
- The United Ostomy Associations of America (UOAA) offers training for support group visitors. You can find local groups through their website.
- The UOAA also seeks help with advocacy at the national level.
4. Possible barriers:
- Some hospitals, like those in Texas, require background checks and treat volunteers like unpaid employees due to privacy laws, which can discourage potential volunteers.
5. Alternative ways to help:
- Create YouTube videos to demonstrate pouch changes, especially for less common stoma shapes, like an inverted stoma.
- Start a personal blog to share your experiences. Writing about your journey can reach people in areas where in-person support is limited.
6. General observations:
- Having a stoma is a significant life change, and peer support groups and resources are still scarce in many places.
- Simple, non-judgmental conversations with someone who has been through the same experience can be very reassuring for new patients, even without a formal support structure.
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