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Jan 14, 2025

Adjusting to Life with a Stoma: Experiences and Tips

This topic is about adjusting to life with a new stoma and the appliance that comes with it. The person sharing their experience is seven weeks post-surgery and is curious about how others have adapted over time. They are looking for reassurance and advice on how to feel more comfortable and confident.

Here are some helpful insights and advice from others who have been through similar experiences:

1. Many people find that living with a stoma becomes "second nature" over time. Those who have had a stoma for years often say they rarely think about it and continue to lead full, active lives, including working, traveling, hiking, and dating.

2. Give yourself time to adjust. It can take several months to a year for routines and mindset to settle. Everyone's journey is different, so don't rush yourself. Acceptance will come at your own pace.

3. Focus on the positive aspects, such as relief from ulcerative colitis or Crohn's pain, no longer needing to constantly find a bathroom, having more energy, taking fewer medications, and enjoying an improved quality of life.

4. Your attitude can make a big difference. By concentrating on other interests, goals, and daily activities, the stoma can become less of a focus in your life.

5. Finding the right appliance is crucial:
- The Hollister 2-piece system with a thin retention belt can help reduce the feeling of a heavy bag.
- Nu-Hope Corporation support belts come in various widths and can hold the pouch securely while allowing gas release.
- Convatec convex one-piece pouches are suitable for retracted stomas and sensitive skin.

6. Support belts and bag-retention belts can boost confidence when walking or sleeping and may help prevent or manage parastomal hernias.

7. Leaks can happen, but most people learn to prevent them with the right system, good skin preparation, and timely emptying. It's important to accept that occasional accidents may occur and to carry supplies just in case.

8. Tips for emptying or "burping" the pouch:
- Use transparent or windowed bags if you need to monitor output.
- Face the toilet when emptying the pouch, and do what feels comfortable for you.
- Release gas discreetly to avoid awkward situations.

9. Managing diet and output involves gradual experimentation to identify trigger foods. Some people find that taking a small amount of Miralax daily helps keep their output regular.

10. Most people get used to any noises the stoma makes, and a light pat or humor can help ease any embarrassment. Others rarely notice the pouch's appearance.

11. Physical activity is possible with the right support, such as belts or snug underwear, allowing you to walk, hike, exercise, and travel without issues.

12. Mental milestones, like dreaming with the stoma as just a part of you or needing reminders to change the appliance, can indicate that you've adjusted well.
See full discusison
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