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Mar 14, 2023

Ileostomy : I'm not OK with this!

This topic is about a 57-year-old who recently had emergency surgery and now lives with a permanent ileostomy. The person is dealing with various challenges, such as frequent leaks, severe fatigue, and mood swings. They find online resources overly positive and are considering creating content that reflects a more honest experience, wondering if this would be helpful to others.

Here are some pieces of advice and insights shared:

1. Creating a blog or videos from a candid and humorous perspective could be valuable to many. It can also aid in your own healing process.

2. Keep your content light-hearted yet honest. Balancing the darker aspects with humor can make it uplifting rather than overwhelming.

3. Writing, whether it's journaling, articles, or poetry, can be therapeutic. Revisiting your writings later might help reduce negative emotions.

4. Allow yourself to express all feelings, including anger. It's important to experience them rather than forcing positivity.

5. Humor, such as making up funny names for your stoma, along with music and laughter, can help reduce stress.

6. Don't rush your physical recovery. Energy will return gradually after major surgery.

7. Regular visits to your stoma or ET nurse are important:
- Seek counseling if your mood remains low.
- Continue experimenting with different appliances until you find what works best to prevent leaks. Nurses can suggest alternatives.

8. For low energy, try eating frequent meals that combine carbohydrates and protein, like pasta with meat sauce or burgers and fries. Stay hydrated, and take small walks to boost your appetite and mood.

9. If issues persist, connect with specialized centers experienced in Pseudomyxoma Peritonei and ileostomy care.

10. Online and local ostomy support groups are diverse and include people with various attitudes. Seek out those who share your perspective.

11. Many people find gratitude in their stoma because it saved their lives. Shifting your focus towards gratitude can gradually replace resistance.

12. Be mindful of the impact your content can have on others. Aim to support rather than discourage.

13. Involve your spouse or partner, as they can be invaluable in managing leaks or appliance changes. Accept their help when needed.

14. If emotions become overwhelming, professional therapy and/or antidepressants are valid options to consider.
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