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41,452 members
Nov 15, 2012

Emergency Ostomies - Lack of Support and Lessons Learned

This topic is about the experiences and lessons learned from undergoing an emergency ileostomy, which is a type of surgery where an opening (stoma) is created in the abdomen to allow waste to exit the body. This particular case highlights the challenges faced when there is minimal post-operative support and education. Here are some helpful insights and advice based on this experience:

1. Seek out qualified stoma-nurse support as soon as possible. It's important to ask for:
- Daily teaching and demonstrations while still in the hospital.
- Weekly or as-needed home visits after you are discharged.
- Direct phone numbers for urgent questions, as some nurses may provide their personal mobile numbers.

2. Connect with peer networks. Local UOAA groups, ostomy clubs, and hospital volunteer programs can link you with experienced ostomates who can offer support through bedside visits, phone calls, or home mentoring.

3. Be prepared for accidents, especially in the beginning. Make sure to:
- Double-check that the pouch is fully snapped to the flange or wafer.
- Ensure the tail outlet or bottom closure is secured before standing up.
- Keep spare supplies within reach when moving around.

4. Maintain a sense of humor. It can be a great way to cope with leaks, spills, and the significant changes in your life.

5. Expect some trial-and-error with appliances. Work closely with your nurse to find a system that works well, especially if your stoma is in a challenging location, like through the belt or waistline.

6. If you are planning to have reversal surgery, have adult diapers or absorbent pads ready for the first few days to manage any unpredictable output.

7. Consider volunteering once you feel confident. Offering hospital visits or phone support can help fill the education gap that many emergency patients experience, and it doesn't require a medical degree.
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