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Jul 18, 2019

Ostomates, Share Your Stories for an Upcoming Book!

This topic is about a writer who is working on a book that aims to capture the personal experiences of people who have undergone ostomy surgery. The focus is on the emotions and challenges faced before and after the surgery, as well as stories that inspire hope. The writer is reaching out to ostomates to share their stories, asking them to include their gender, age, and a pseudonym for anonymity.

Here are some insights and advice shared by others:

1. The writer is interested in exploring the fear surrounding ostomy surgery, which includes:
- Uncertainty about whether the surgery will be beneficial.
- Hopes for an improved life post-surgery.
- Concerns about scars and how others might perceive them.

2. Personal reflections can be a rich source of material. One person has offered to share years of personal rhyming verses about living with a stoma and is open to discussing them publicly or privately.

3. Some people have reported that they experienced little or no fear of the surgery itself. Instead, their greater fear was the prospect of ongoing illness or not surviving without the operation.

4. Scars are often seen as insignificant compared to the benefits of regained health. Many people have scars for various reasons, and they are a part of life.

5. After surgery, the fear often shifts from the procedure to concerns about the reliability of ostomy appliances:
- A lack of knowledgeable ostomy-care nurses and limited resources can make choosing the right product confusing.
- Some nurses might recommend lower-quality pouches because they are provided for free by manufacturers.
- Persistent leaks can cause anxiety about leaving home, but experimenting with different products until finding one that works can alleviate this fear.

6. There is an ongoing fear of potential future issues, such as hernias, blockages, or the need for additional surgeries. However, many people choose not to let fear or their ostomy dictate their lives.

7. It is suggested to connect with other experienced ostomates to gain additional perspectives and hear more stories.
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