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40,870 members
Dec 28, 2021

Double Bagged!

Topic Explanation
The discussion topic "Double Bagged!" is initiated by a new forum member who has both a colostomy and a urostomy, a situation they describe as being "double-bagged." This condition arose due to a rare form of cancer, and the individual is reaching out to connect with others who might be in a similar situation or to gather insights from the ostomy community.

Extracted Advice and Helpful Insights
1. Support and Community Engagement:
- Members encourage engagement and sharing experiences within the forum to help each other and newcomers feel welcomed and supported.

2. Personal Experiences and Management Tips:
- One member shared their temporary experience with dual ostomies, highlighting the challenges and adjustments needed, even if one of the stomas was non-functional.
- Another shared the logistical challenges and rare nature of having two ostomies, emphasizing the importance of self-management and the benefits of not having to wake up at night for bathroom needs.

3. Stoma Care and Management:
- Discussion about the importance of vigilant management of a urostomy due to constant urine output and the need to regularly check the pouch to prevent overfilling.
- Experiences with different pouch systems and the importance of finding the right fit to prevent leaks were shared. Members discussed their trials with various brands and types of ostomy bags and accessories to find what works best for their specific needs.
- The importance of proactive self-care and not solely relying on healthcare providers for management advice was emphasized. One member noted the improvement in quality of life after switching to a more compassionate and proactive stoma nurse.

4. Lifestyle Adjustments and Positive Outlook:
- Members discussed how they adapted their lifestyles post-surgery, including traveling with a motorhome to accommodate their needs and pursuing activities they enjoy.
- Emphasis on maintaining a positive attitude and focusing on what can be controlled, such as enjoying life and not dwelling on the negatives.

5. Challenges with Healthcare Providers:
- Some members expressed frustrations with healthcare providers, particularly stoma nurses who may not always provide the best care or advice, underscoring the importance of advocacy for oneself in medical settings.

6. Technical Advice on Ostomy Management:
- Detailed advice was given on managing ostomy appliances, such as using different types of bags, belts, and accessories like moldable rings or paste to prevent leaks and ensure a secure fit.
See full discusison
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