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Jun 27, 2013

Struggling with a New Ostomy - Seeking Advice and Support

This topic is about someone who is adjusting to life with a high-output ileostomy after colon cancer surgery. They are facing challenges such as continuous leaks, weight loss, and the emotional impact of these changes. Here are some helpful insights and advice shared by others who have been through similar experiences:

1. **Thickening and Slowing Output**
- Incorporate binding foods like cheese, crackers, bananas, peanut butter, and rice into your diet.
- Avoid foods and drinks that can increase output, such as watermelon, high-sugar items, and large volumes of fluids with meals.
- Try sugar-free electrolyte drinks to maintain salt levels without increasing output.
- Some find liquid Imodium more effective than tablets; others use two tablets at once.
- Consider using commercial absorbers or gel packs in the pouch to solidify liquid output.

2. **Nutritional and Lab Monitoring**
- Request regular B-12 injections and high-dose vitamin D from your doctor.
- Ensure you have full nutritional panels and prompt IV/electrolyte replacement when needed.
- Boost daily calories with ice-cream/Ensure shakes and frequent small meals.

3. **Appliance Choice and Skin Protection**
- Get free samples from major manufacturers to find the best fit for you.
- Use products like barrier rings, stoma seals, and no-sting barrier films for skin protection.
- Change appliances every 3-4 days to prevent leaks.
- Follow a technique of cleaning and drying the skin, applying powder and barrier film, and using a snug barrier ring and wafer.

4. **Medicare and Supply Quantities**
- Medicare typically allows up to 20 pouches and barriers per month, but more can be requested for medical necessity.

5. **Clothing and Discretion**
- Consider hip-hugger or low-rise jeans, skirts, and support garments to accommodate the pouch.
- Use ostomy belts or camisoles to keep the pouch discreet.

6. **Intimacy and Self-Image**
- Confidence will grow over time; use intimacy belts and pouch covers to feel more comfortable.
- Many find supportive partners who focus on the person, not the pouch.

7. **Support and Coping**
- Attend local ostomy-association meetings for peer support and practical advice.
- Online forums and prayer can also be valuable sources of support.
- Emotional lows are common early on, but improvement is often seen within a few months.

8. **Practical Day-to-Day Tips**
- Empty the pouch before meals to prevent over-filling.
- Use curved scissors for easy wafer cutting.
- Keep a change kit by your bedside for night-time leaks.
- Rest when needed, as healing and electrolyte balance require energy.

These insights aim to help manage the physical and emotional challenges of living with an ileostomy, offering practical solutions and support.
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