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41,452 members
Nov 23, 2019

Seeking Support and Chat for New Ileostomy

Adjusting to life with a new ileostomy can be quite a journey, especially when you're feeling overwhelmed and exhausted. This is the story of a 65-year-old woman who is navigating this new chapter in her life. She is a dedicated wife, mother, and grandmother, with a full-time job and a passion for volunteering with animal rescues. Right now, she's on sick leave and looking for support from others who understand what she's going through.

Here are some insights and advice that might help:

1. Recovery and Mind-set
- The first few months are often the toughest, but with time, your strength, confidence, and daily routines will improve.
- Embrace the changes, take control of your journey, and celebrate small victories each day.
- Reach out to forums for practical advice and emotional support from people who truly understand.

2. Sleep and Pain Management
- Back and shoulder pain are common after abdominal surgery, often due to weak core muscles and changes in sleeping positions.
- Create a "pillow fortress" to support your body: sleep slightly propped up, use pillows under your arms and sides, and place a firm pillow between your knees if lying on your side.
- Try lying flat with a pillow under your knees to keep your spine neutral.
- Pain should decrease as your muscles strengthen; gentle movement during the day can help.

3. Medical Follow-up
- If pain or chest symptoms persist, or if you suspect a blood clot, seek assessment from a surgeon or stoma/ostomy nurse rather than relying solely on a GP.
- Be alert for signs of blood clots and seek immediate care if symptoms worsen.

4. Diet and High Output
- In the early weeks, focus on small, frequent meals like soups, yogurt, pasta, toast with peanut butter, scrambled eggs, and smoothies.
- Avoid gas-producing or hard-to-digest foods like raw fruits and vegetables until your output stabilizes.
- Gradually reintroduce foods and monitor your tolerance; high output usually decreases over time.

5. Fatigue and Activity
- Expect to feel very tired; pace yourself and rest when needed.
- Short walks are beneficial; gradually increase the length as your stamina improves—your pets can be great motivation.
- Gentle core-strengthening and stretching exercises can aid in your recovery.

6. Emotional Support
- Family and friends might not fully understand your experience; connect with others who have ostomies for genuine empathy.
- Laughter and humor, such as funny forum posts, can be great medicine—embrace it.

7. Forum Tips
- Completing your profile on forums can help others provide more tailored advice.
- While in-person meet-ups might happen later, online chats offer immediate support.

Remember, you're not alone on this journey, and there are many people who are ready to support and share their experiences with you.
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