This topic is about the challenges faced by ostomy users in the UK regarding the usage and supply of ostomy bags. It highlights issues such as how often to change the bags, the costs involved, and dealing with restrictions imposed by general practitioners (GPs) due to NHS austerity measures. Here are some helpful insights and advice for managing these challenges:
1. Frequency of Changing Ostomy Bags:
- Most people change their entire system every 2 to 5 days, with many feeling that 48 to 72 hours is a common guideline. However, it's important to change whenever you feel the bag is no longer secure.
- During times of increased output, such as diarrhea, chemotherapy, travel, or exercise, some people change their pouches daily or even twice daily to maintain skin health and prevent leaks.
2. Communicating with Your GP:
- Ask your GP if there are any formal NHS limits on ostomy supplies, as none are widely known.
- Consider asking your GP if they would feel comfortable wearing a leaking bag to emphasize the importance of adequate supplies.
- Stoma nurses can provide letters stating the medical necessity for specific quantities, which can help in discussions with your GP.
- If your practice nurse handles ostomy prescriptions, speak with them directly to clear up any misunderstandings.
- If rationing continues, consider escalating the issue to your Member of Parliament, local Clinical Commissioning Group, or the International Ostomy Association.
3. Ordering and Supply Tips:
- Suppliers like Charter Healthcare, AlphaMed, and Lloyds Chemist require a prescription before dispatch, so plan for a two-week lead time.
- To maintain a buffer, some people skip an order occasionally or request extras before holidays.
- In emergencies, many suppliers can courier a small "loan" box, and some offer free wipes and bin bags.
4. Product Experiences:
- Different products have varying wear times and experiences with leakage and odor. For example, Hollister New Image two-piece systems are washable and reusable for some, with typical wear times of 2 to 4 days.
- Coloplast SenSura and Dansac Converse are other popular options, with users reporting different wear times and experiences.
5. Managing Restricted Allowances:
- Common monthly allocations include 20 to 30 pouches and 10 to 20 baseplates for two-piece systems, or 30 to 90 one-piece bags, along with adhesive remover and night-drainage bags if needed.
- If your allocation is too low, request an increased quantity on your repeat prescription, citing reasons like chemotherapy or medication-induced diarrhea.
6. Odor Control Alternatives:
- If in-bag deodorant is restricted, consider using supermarket air-freshener sprays, Diamond charcoal sachets, in-bag liners, or flavor-scented Metamucil powder to help control odor.
7. Skin Care and Leak Prevention:
- Use barrier sprays or creams, mouldable rings, or paste to extend wear time and prevent leaks.
- Security strips around the flange edge can help with early seepage.
- After bathing, use a hair-dryer and trim body hair weekly to maintain a good seal.
- Absorbent bed pads and night drainage can help manage high urostomy output.
8. Coping Strategies When Challenged:
- Show decision-makers your stoma or photos to illustrate the medical need for supplies.
- Keep a diary of your usage patterns and any leak incidents to demonstrate variability.
- If your GP surgery refuses to cooperate, consider changing practices, as prescriptions are transferable within the NHS.
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