This topic is about someone who has been living with an ileostomy for a little over a year after undergoing emergency surgery. The surgery was necessary due to complications from cancer treatment many years ago. The person is now considering whether to have a surgical reversal of the ileostomy, but is unsure due to the risks involved and the impact it might have on their family. They are also planning a wedding and are concerned about managing leaks, especially on the big day. Here are some pieces of advice and insights shared by others in similar situations:
1. Decision-making about reversal:
- Take your time and gather detailed information about the risks and benefits of a reversal. It can involve multiple surgeries and may result in the loss of more small bowel.
- Some people choose to keep their ileostomy when they find their quality of life has improved, with fewer leaks and longer wear times.
- It often takes 12–18 months for the body to adapt, and leaks usually decrease over time as you become more experienced.
2. Emotional coping:
- Focus on the positives in your life, like your supportive fiancé and upcoming wedding.
- Remember that an ostomy is just a different way for your body to function, not an illness.
- It's normal to have dark thoughts and feelings of PTSD; allow yourself time to heal emotionally.
3. Preventing leaks and gaining pouch security, especially for big events:
- Reinforce the wafer/flange with extra tape, like Hypafix or medical paper tape, for added security.
- Consider wearing a thin elastic ostomy belt to keep the appliance snug.
- Specialized underwear with support panels can help hold the pouch flat and reduce ballooning.
- Use convex skin barriers if your stoma is flush or if leaks are frequent; try free samples from different manufacturers to find the best fit.
- During changes, use a tool like "The Equalizer" to press a firm ring sealer evenly for a better seal.
- Plan your meals to manage output: some people finish eating by late afternoon or fast before important events, while others have an early main meal and a light snack later.
- Adjust your diet on event days to include lower fiber and thicker-output foods, and stay hydrated with water.
4. General product and technique tips:
- Always have a change kit, extra tape, and disposal supplies with you.
- Once you find the right combination of barrier, ring, and routine, wear time can often be extended to 3–10 days.
- Contact ostomy manufacturers for free samples to try new products like barriers, rings, belts, deodorants, and pouch filters.
5. Long-term outlook:
- Many people who have lived with an ileostomy for several years report leading full, active lives with rare accidents once they refine their systems.
- Acceptance usually grows over time, and many feel no different from those without an ostomy, opting for surgery only if it's medically necessary.
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