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May 13, 2020

Explaining the Sensation of an Ostomy - How to Put It into Words?

This topic is about understanding what it feels like to have an ostomy, which is when stool exits through a stoma in the abdominal wall. People with ostomies often get asked about the sensations they experience, and it can be challenging to describe. Here are some insights and advice on how to explain these feelings:

1. The person who started the discussion often feels the output because they have a minimal remaining bowel, leading to almost constant output. They notice distinct sensations, especially when thicker output builds up and then releases.

2. They feel the output more than some others, possibly because their stoma was made from the duodenum rather than the ileum, which might have different nerve structures.

3. An ostomy is life-saving but not perfect. It's not the first choice for anyone, but it can be convenient since you don't need to find a restroom, and gas escapes without odor.

4. When explaining to others, consider your audience. You can use humor, like jokingly asking if they really want to know about it, or keep it light. If they are genuinely interested, you can offer more details and even use diagrams or books to help educate them.

5. Some people compare the sensation to a fly landing on bare skin, a gentle tickle, or like "aliens" moving around inside the abdomen. This is felt about 60% of the time.

6. Wind can feel like small popping releases, while thicker output, similar to toothpaste, can be felt pushing out. Watery output often goes unnoticed.

7. Many people with colostomies or ileostomies report minimal or no physical feeling. They usually become aware of the output only when checking the pouch, describing it as a "living tattoo" that you forget is there.

8. Sensations can vary unpredictably. Sometimes you know when output is happening, and other times you don't.

9. A practical tip is to watch the stoma closely during bag changes or after a shower when you don't have a pouch on, as unexpected output can occur.
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