This topic is about someone who has been living with an ileal-conduit urostomy for 2½ years and is now experiencing frequent urinary tract infections (UTIs). They are looking for practical solutions to manage these infections, which are causing significant discomfort and health issues. Here are some insights and advice that might help:
1. Consider seeking a second opinion from another experienced urologist, nephrologist, or infectious-disease specialist who might focus on finding the root cause of the infections rather than just treating the symptoms.
2. Compare your care routine with others who have similar conditions. Some people with urostomies report having no infections despite less stringent care routines. For example:
- Using a 2-piece Hollister system and changing it every 5 days while maintaining a daily water intake of 2–3 liters.
- Using a one-piece pouch changed every 24 hours with minimal hygiene routines and a normal diet, including juices and alcohol.
3. Consider reaching out to a larger urostomy community, such as the Bladder Cancer Advocacy Network forum on Inspire, to connect with more people who have similar experiences and might offer additional advice.
4. If antibiotic resistance is a concern, some alternatives have been effective for others:
- Gentamicin IV might work when other antibiotics fail.
- Monthly infusions of human immunoglobulin (Intragram) can potentially reduce the frequency of infections by boosting the immune response.
- Short courses of IV hydrocortisone or tapered oral steroids may help relieve severe inflammation.
5. Home urine dip-stick testing can be a useful tool to quickly determine if an infection is present or if symptoms are due to sterile inflammation, allowing for prompt action.
6. Ensuring adequate and regular pain control is crucial to avoid severe distress and improve quality of life.