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41,456 members
May 15, 2011

What Has Your Disease Taken and Given? Share Your Thoughts!

This topic invites people to share their personal experiences with bowel diseases like Crohn’s, ulcerative colitis, or cancer. It asks them to reflect on what these conditions have taken away from their lives and what unexpected gifts they might have received in return. The discussion encourages openness and understanding, emphasizing that each story is unique and free from judgment. Here are some insights and advice shared by participants:

- Acceptance & Patience
- One person, who has lived with an ileostomy for 25 years, shares that losing parts of their body taught them patience and the importance of accepting help during recovery.
- Many find that their experiences have made them emotionally stronger and more resilient.

- Emotional Coping
- Dwelling on self-pity can prolong suffering. Instead, focusing on daily life and small hopes can be more beneficial.
- It may take up to two years to feel somewhat normal after surgery, so giving yourself time is crucial.

- Appliance Fit & Leakage
- Being discharged with the wrong size wafer can lead to chronic leaks. Getting refitted with the correct size can significantly improve quality of life.

- Output Management When Out of the House
- Eating lighter meals before going out can help manage the frequency and volume of ileostomy output.
- Be mindful of post-meal surges and try to stay near bathrooms after eating.

- Thickening Output vs. Weight Gain
- Foods like pasta, bread, and cereal can thicken output but may also lead to weight gain. It's important to monitor your diet and adjust as needed.

- Hydration & Diet Strategies
- Consider replacing large meals with 3 to 5 smaller meals throughout the day.
- Using alkaline or high-pH water can help with faster hydration and reduce hunger.
- Adding fiber supplements and carefully trying small portions of fruits and vegetables can be beneficial.

- Diabetes-Specific Tips (for those with Type-2 diabetes)
- Some members suggest trying bitter melon supplements and the "Aura Patch for Diabetes" as additional support alongside medical care.

- Exercise & Activities
- Once confidence in the appliance grows, activities like swimming, visiting steam rooms, and going to the gym can be revisited gradually.

- Health-Care Access
- In the U.S., challenges with insurance, such as pre-existing conditions and high deductibles, might lead some to explore national health systems like the NHS in the UK. It's important to explore all coverage options early.

- Community Support
- Online resources, such as www.meetanostomate.org, offer shared experiences, practical tips, and emotional support.
See full discusison
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