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Where Everybody Understands You
41,403 members
Jul 05, 2025

Y'all are AMAZING!

Adjusting to life with an ostomy can be quite a journey, and it's inspiring to see how many people in the community manage to travel, date, work out, and live life to the fullest. If you're feeling overwhelmed by challenges like anemia, brain fog, muscle loss, or employment worries, you're not alone. Even small victories, like a leak-free day, can feel like big wins. Here are some insights and advice from the community that might help:

1. Community resources:
- Consider attending annual ostomy conferences, which offer workshops that can be very helpful for newcomers. The next one is in Orlando, FL, conveniently located near Disney with shuttle service.
- Online forums provide 24/7 peer support, and you’re encouraged to ask any questions you have.

2. Positive mindset and gradual progress:
- Remember that surgeries often save lives, and adapting to changes takes time. Be patient with yourself.
- Take small steps, like starting with short walks and gradually increasing the distance. Many members have progressed to multi-mile hikes and even international travel within a few years.
- Keep laughter and optimism central to your recovery.

3. Leakage prevention:
- Using waterproof barrier strips around the flange can help prevent leaks, whether you use a one-piece or two-piece system.
- Emptying your pouch promptly, especially with two-piece systems, can add extra security.

4. Working with an ostomy:
- Many people continue to work full- or part-time. Often, limitations are due to the underlying illness rather than the stoma itself.
- In some countries, a stoma is classified as a disability, which may offer options between employment and benefits.

5. Site membership cost discussion:
- While fees help cover website expenses, valuable information and interaction are still available to non-paying members. Everyone can contribute knowledge and support.

6. Encouragement and offers of help:
- Members often extend personal invitations for meet-ups, like at Disney or on a Disney Cruise, and reassure that leaks during exciting times are normal and manageable.
- The community is open to all topics, and everyone is welcome to share their experiences, successes, and setbacks.
See full discusison
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