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41,443 members
Feb 06, 2011

Life with My Ostomy: The Emotional and Financial Journey

Living with an ostomy can be a journey filled with a mix of emotions and challenges. One person, a year after undergoing emergency surgery, shares their experience of living with an ostomy bag. They feel grateful to be alive but also face feelings of confusion, anger, sadness, and humiliation, especially after experiencing leaks at work. Initially, learning how to change the appliance was overwhelming, but now leaks are rare. However, the financial burden is significant due to two month-long hospital stays without health insurance, leading to large debts and stress from aggressive bill collectors. This person is using this platform to share their story and seek understanding.

Here are some helpful insights and advice shared by others:

1. Handling medical debt:
- Hospitals and doctors are required to continue treatment if you make even small regular payments.
- They are not allowed to harass or threaten you legally; the state Attorney General’s office can help if needed.
- Consider asking employers, churches, or community organizations about "emergency hardship" funds.

2. Emotional support and mindset:
- Give yourself time to work through your feelings and move toward acceptance; remember, the ostomy does not define you.
- Practice positive thinking and meditation, and reach out to supportive communities when you need to.

3. Appliance management and leak prevention:
- Some people recommend the Hollister two-piece system with roll-lock closure and Velcro strip for its leak resistance.
- Always bring spare supplies when leaving home and develop a routine for changing the flange/pouch.

4. Disability and lifestyle adjustments:
- Applying for disability benefits can provide financial relief if working becomes impossible.
- It’s common to limit outings until you feel more confident with your supplies; plan to gradually re-engage in activities.

This person also shares that their username, "Poohgirl," is inspired by a love for Winnie-the-Pooh, not because of the ostomy pouch. They cannot use Hollister products due to a skin allergy and rely on supplies recommended by an ostomy nurse. Despite accepting that "bad days" happen, they generally maintain a positive outlook, although they cannot have children.
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