Living with both a colostomy and a urostomy, often referred to as being "double-bagged," can be quite a unique experience. This situation arises when someone has undergone surgery that results in two permanent stomas, one for the bowel and one for the bladder. Here are some insights and advice from those who have navigated this path:
- Surgery and Recovery: The journey often begins with a complex surgery, sometimes lasting up to 24 hours and involving a team of surgeons. Recovery can be lengthy, with some spending months in the hospital.
- Finding Positives: Despite the challenges, there are silver linings, such as being able to sleep through the night without needing to urinate.
- Managing Two Stomas:
- It's rare to have both a colostomy and a urostomy, and managing two appliances can be time-consuming.
- Many find the urostomy more demanding because it drains continuously, requiring regular visual checks since there's no bladder sensation.
- Night Drainage Solutions:
- Standard night bags might not suffice; larger 3-litre bags can provide up to 8 hours of uninterrupted sleep.
- It's important to connect the night bag properly and sleep on your back to prevent kinking or backflow.
- Handling Leaks:
- Leaks can occur due to mismatched equipment, prolapse, hernia, or ineffective advice.
- If your stoma nurse isn't helpful, don't hesitate to ask for another. A knowledgeable nurse can make a big difference.
- Try different brands through sample programs to find what works best for you.
- Recommended Products:
- Coloplast Sensura Mio, Hollister, SALTS Be Confidence, Dansac, Oakmed, Pelican, and Wellmed are some brands that have been recommended.
- Accessories like Coloplast Brava Tape Extenders, moldable rings, and barrier pastes can enhance security.
- Stoma belts can help manage prolapse or hernia and improve appliance fit.
- Hernia and Prolapse:
- A parastomal hernia can cause the stoma to protrude.
- Support belts and, if necessary, surgical repair with mesh can be options.
- Mindset and Lifestyle:
- Embrace a positive attitude; humor and gratitude can help ward off depression.
- Consider creating a "bucket list" to reclaim travel and leisure, such as buying a motorhome for convenient access to private facilities.
- Remember the saying, "What doesn’t kill you makes you stronger."
- Community Support:
- Even those with a single stoma can offer valuable advice. Everyone is encouraged to share experiences and learn from each other.
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