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Jul 29, 2012

Considering a colostomy - Seeking advice and experiences

This topic is about a person with a spinal cord injury considering a colostomy to improve their quality of life. They have been dealing with a challenging bowel routine for 16 years and are seeking insights into the pros and cons of living with a colostomy. Here are some helpful points shared by others who have experience with colostomies:

1. General Experience & Quality of Life
- Many people find their colostomies to be manageable and report regaining a normal, active life. Some have experienced minor issues like blockages from certain foods.
- There are potential downsides, such as unexpected sounds, odors, leaks, and the cost of supplies. There is also a risk of developing a parastomal hernia and the permanence of the surgery.

2. Time Commitment & Scheduling
- Some individuals spend 1–2 hours every 24–48 hours on irrigation or management routines, which they find worthwhile.
- Others manage to have a once-daily morning output through diet control and magnesium supplements, allowing for a more predictable day.

3. Irrigation
- It's recommended to discuss with a surgeon whether irrigation is a suitable option based on anatomy and nerve function.
- When possible, irrigation can reduce the frequency of bag changes and provide a more predictable social life.

4. Diet, Medication & Blockages
- Avoid foods that can cause blockages, like peanuts.
- Magnesium supplements can help achieve a predictable morning emptying.
- Eating several hours before bedtime can minimize nighttime output and gas.

5. Appliance Selection & Skin Care
- Closed-end, two-piece pouching systems are convenient for easy changes.
- Pouches are typically changed when full, and the flange every 3–7 days.
- Some people find success with minimal accessories, using simple cleaning methods.
- Pre-cut flanges can simplify application after initial post-op swelling subsides.
- It's wise to carry spare supplies when away from home.

6. Complications & Risk Management
- Some have experienced food blockages, hernias, or leaks, but many have not faced these issues.
- The surgery is difficult to reverse, and standard surgical risks apply.

7. Costs & Insurance
- Supplies can be costly, but some manage expenses through private insurance and Medicaid.

8. Living with Dual Stomas & Spinal Injury
- People with both urinary and fecal stomas manage well by planning around dexterity limits and seating positions.
- Peer support from others with similar experiences can be invaluable for learning and encouragement.
See full discusison
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