This topic is about the need for a dedicated section for urostomy discussions, separate from those about colostomies. A bladder-cancer survivor with a urostomy appreciates the forum but finds it challenging to locate information specific to urostomies, as most discussions focus on colostomies. They suggest creating a separate area for urostomates to find relevant information more easily. Here are some helpful insights and advice shared by the community:
1. Empathy and Inclusion
- Members recognize that while urostomies, ileostomies, and colostomies share many common challenges like bag capacity, leakage, skin irritation, and wear time, it's important for all three to be equally represented in discussions.
2. Follow-up Care
- It's crucial to maintain regular check-ups with both a urologist and a stoma/ostomy nurse. Consider requesting an "open appointment" arrangement to address issues like skin sores promptly.
- Silver nitrate can be a useful treatment for persistent peristomal skin sores.
3. Site Improvement Suggestion
- Use the forum’s "Contact Us" feature to propose a separate urostomy section to the administrators, as moderators might not see every post.
4. Peer Support Offers
- Several urostomates, with experiences ranging from 6 months to 15 years post-surgery, are willing to share their experiences, answer questions, and provide ongoing support.
5. Practical Tips for New Urostomates
- If you experience adhesion problems, consider consulting an ostomy nurse associated with a hospital burn and wound unit, as they often have specialized expertise.
- Continue posting urostomy-specific questions on general ostomy forums until a dedicated space is available, as other urostomates are present and eager to help.
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