This topic is about the frustrations and challenges faced by people living with an ostomy in the United States. It highlights issues in ostomy care, education, technology, and advocacy. Here are some key points and advice shared by the originator and others:

- Many healthcare professionals lack knowledge and compassion when it comes to ostomy care, which can be frustrating for patients.

- Education for patients and their families is often poorly coordinated and not easily accessible.

- Technological advances in ostomy treatment and supplies are slow, with limited innovation.

- Financial assistance for ostomy supplies is often insufficient, making it difficult for some to afford necessary items.

- With a significant number of people living with a stoma in the U.S., the originator believes that collective advocacy should be stronger. They are curious about others' experiences with the United Ostomy Associations of America (UOAA).

- There are concerns that the UOAA may have shifted its focus towards money and lobbying rather than prioritizing patient needs.

- To raise visibility and normalize ostomies, it is suggested to publicly show them off. Having a high-profile individual living openly with an ostomy could help accelerate awareness and acceptance.

- Local events, like community "ostomy celebration of life" gatherings, can help build understanding.

- The UOAA is working to have every U.S. state recognize Ostomy Awareness Day on October 5, 2024.

- When dealing with uninformed medical professionals, it's important to confront dismissive attitudes and seek different providers if necessary. Patients should also educate themselves before surgery.

- Hospitals, surgeons, and WOC nurses should provide vetted website lists to patients at discharge for essential early-stage education.

- New patients should be warned early about the risk of parastomal hernia and shown how to use support belts.

- Manufacturers like Hollister, ConvaTec, and Coloplast offer free samples and have specialist ostomy nurses, but many new users only discover this online.

- Understanding insurance and emergency supply gaps is crucial. UOAA claims emergency supply programs exist, but members report issues with suppliers and unresponsive phone numbers.

- Opinions on the UOAA are mixed. Some find it valuable for advocacy, while others are unhappy with high fees and a perceived shift towards fundraising.

- The national conference is held every two years, but location and climate can affect attendance.

- While basic information is easy to find online, complex or specific issues often require support forums for more in-depth answers.