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Jul 24, 2012

Meeting Others with Ostomies - Share Your Experiences!

This topic is about the experiences of meeting other people who live with an ostomy. The person who started the conversation has met two others in person and is curious about how many others have had similar encounters. They also mention that it can sometimes feel lonely being the only one with an ostomy, and they admire those who have met several fellow ostomates. Here are some helpful suggestions and insights shared by others:

1. Consider joining or starting a local ostomy support group. People have met anywhere from a few to 30 fellow ostomates through groups organized by stoma nurses, hospitals, or community meetings.

2. Ask your stoma or ostomy nurse about nearby groups, as many nurses run or know of active meetings.

3. Use the United Ostomy Association of America (UOAA) to find chapters. They have a support-group locator on their website, and there are chapters in every U.S. state and some countries outside the U.S.

4. Online forums and websites can be a great first step to connecting with others. They provide ongoing peer support and can often lead to in-person friendships and meet-ups.

5. Attending camps or retreats, such as week-long programs for kids and teens with ostomies, offers education, shared activities, and the chance to meet many others in similar situations.

6. Having even one friend or family member with an ostomy can be invaluable for comparing medical instructions, troubleshooting, and emotional support.

7. If no group exists nearby, consider creating one. One person started a local association that now has about 12 participants.

8. Regular interaction with fellow ostomates—whether through conventions, casual encounters, or volunteering—helps reduce feelings of isolation and supports psychological well-being.
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