This topic is about living life after having most of the colon removed and managing an ileostomy, which the person affectionately named "Coco." The journey has been challenging, with complications and feelings of isolation. Here are some helpful insights and advice shared by others who have been through similar experiences:

1. Appliance Management
- If the seal of your appliance is secure, you might not need to change it daily. Many people with an ileostomy can keep a flange for 4-7 days.
- Using opaque pouches can help reduce the urge to constantly check your stoma.
- Try changing your appliance before eating or first thing in the morning when output is minimal. Shower changes can allow any output to wash away easily.
- Sleeping on a protective pad can help manage leaks, which are usually washable and not a big deal.
- If your stoma is aging or retracting, you might need to resize your appliance and change it more frequently. Focus on overall patterns rather than every single episode.

2. Mind-set & Anxiety
- Approach ostomy care like "toilet training" by establishing a routine, organizing supplies, and having backup plans.
- Address one anxiety at a time to break obsessive cycles. Success is personal and can be redefined.
- View your ostomy as a "badge of survival" that allows you to live a normal life despite past challenges.

3. Medical Follow-up
- Seek care at centers experienced with complex IBD and ostomy cases. The Mayo Clinic and Albany Medical Center are recommended for comprehensive assessments.
- Work with a proactive gastroenterologist to monitor the frequency of bag changes, blow-outs, and blockages. This data can help guide treatment adjustments.

4. Reversal Considerations
- Some people caution that reversal surgery can lead to frequent urgency, accidents, and long bathroom visits. Consider the risks versus your current quality of life.
- Severe anemia or limited bowel length are significant surgical risks, so maintaining a stable ileostomy might be safer.

5. Diet & Blockage Prevention
- Regular use of polyethylene-glycol laxatives, like generic Miralax, can help prevent obstructions.
- Introduce all foods in moderation. Large, greasy meals can lead to rapid liquid output followed by slow passage of solids.
- Stay well-hydrated and be mindful of high-fiber or hard-to-digest foods.

6. Practical Tips
- Avoid using alcohol prep pads if they dry out or irritate your skin.
- Trust your own experience. Often, personal insights are more valuable than textbook advice. Share your strategies and ask questions in supportive communities.