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Apr 24, 2023

Making friends with an ileostomy

This topic is about managing social anxiety and concerns about noise when living with a long-term ileostomy. The person sharing their experience has been living with an ileostomy for seven years and has developed significant social anxiety, particularly worried about the pouch making noises or overfilling. This fear has led to isolation, especially when eating in company. They are seeking advice from others who might feel the same way and how they cope with these concerns.

Here are some helpful insights and advice:

1. Situations causing stress include quiet settings like dental appointments, massages, and facials. The person often tries to cover the pouch with a jacket or hand to mute sounds and uses excuses like "I'm just hungry" when noises occur.

2. Dietary adjustments can help reduce gas and noise:
- Avoid or limit sugar, carbonated drinks, beans, lentils, most cheeses, non-lactose-free milk, smoothies, shakes, drinking through straws, chewing gum, and swallowing air.
- Save gas-prone foods like broccoli, cauliflower, and onions for days at home.
- Use lactose-free dairy or unsweetened plain yogurt to ease gas and odor.

3. Over-the-counter aids:
- Devrom tablets can help with odor and some noise reduction.
- Gas-Ex chewables can be taken before meetings or presentations.

4. Physical muffling techniques and supportive gear:
- Lightly press a hand, forearm, or folded jacket over the stoma.
- Rest hands over the pouch when reclined.
- Wear a stoma guard or an abdominal support belt to reduce sounds and provide support.
- In very quiet settings, hold a small pillow or place a light jacket across the lap.

5. Clothing and accessories for confidence:
- Wear loose or layered tops, baggy shirts, or casual outerwear to hide the appliance and deaden noise.
- Consider humorous or awareness-raising T-shirts to break the ice and start conversations.

6. High-output management strategies:
- Time meals so the main output happens at home, allowing for quieter output during the day.
- Carry spare supplies and a change kit when out to ease anxiety.

7. Communication and mindset:
- Be open with friends, colleagues, or health professionals about having a stoma.
- Use humor or simple explanations in quiet rooms.
- Naming the stoma can lighten the mood and help manage worry.
- Remember that most people don’t notice minor sounds; anxiety often magnifies perceived volume.

8. Psychological tools:
- Practice cognitive reframing to recognize the pouch's life-saving role.
- Engage in meditation, therapy, or support groups to build resilience.
- Keep accepting invitations; confidence grows with practice.

9. Peer support and resources:
- Talk with other ostomates through forums, local groups, or webinars.
- Share experiences with friends or coworkers to lessen isolation and educate others.

10. General encouragement:
- Many people report living full, active lives with an ostomy for many years.
- True friends will accept occasional noises; if someone doesn’t, they aren’t worth the worry.
See full discusison
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