This topic is about advocating for better ostomy care, education, and supply coverage. It highlights the challenges faced by those living with an ostomy, such as limited supply coverage and a lack of understanding among medical professionals and insurers. Here are some key points and advice shared by someone who has been navigating these issues:

- Since June 2018, the person has experienced unpredictable stoma bleeding and swelling. Her stoma nurse recommends changing her 2-piece appliance every 1–2 days. She learned about irrigation from a forum, not from her surgeon.

- Insurance often limits the number of supplies covered, and many medical professionals, insurers, and lawmakers lack basic knowledge about ostomies.

- She encourages fellow ostomates across the country to write to lobbyists, senators, and members of Congress to secure better supply coverage and foster understanding of living with a pouch. She believes that collective action and educating decision-makers directly are crucial for meaningful change.

- An example of ignorance in the ER: During a bleeding episode, she removed her pouch, and the doctor mistook the peristomal skin for diseased skin. No ostomy nurse was available, making the visit unhelpful.

- Her motivation to post comes from her stoma nurse's recommendation to write to lobbyists to increase supply allotments. She emphasizes that ostomates, whether insured or not, must act together because "numbers count."

Advice and insights include:

1. Lack of clinical knowledge is widespread:
- Many ER doctors and nurses cannot change or assess an appliance, often requiring wound-care staff to be called in.
- Insurance and government offices are likely just as uninformed.

2. Supply restrictions affect many chronic-care groups, such as COPD patients on oxygen, with periodic re-testing and limited monthly allotments being common.

3. Effective lobbying strategies:
- Identify the actual decision-makers and target them with personal, educational stories.
- Politicians are more responsive when they or someone close to them has firsthand experience; personal testimonials can bridge the empathy gap.
- Organizing collectively increases influence; individual letters have little impact compared with coordinated campaigns.

4. Realistic expectations: Lobbying takes time, effort, and resources. Powerful groups opposed to added spending will lobby against such changes.