This topic is about the journey of adapting and regaining control after colostomy surgery, specifically eight months after the procedure. The person sharing their experience had surgery due to colon cancer and has been navigating various challenges and changes since then. Here are some insights and advice based on their journey:
- Post-surgery challenges included pain and overheating, with difficulty sitting or standing for more than five minutes during the first five weeks. Over time, this improved, but they still experience heat flushes. They found relief using Lume body deodorant to manage the sweating.
- Chemotherapy side effects included damage to lymph nodes, weak ligaments, and neuropathy in the hands and feet. These issues have mostly resolved, with about 98% improvement in the hands and 90% in the feet. Relearning to walk and using stairs at work helped build strength.
- Ostomy challenges involved the initial one-piece hospital pouch failing once activity resumed. Changes in skin condition and stoma shape led to poor adhesion and leaks. Switching to a Coloplast SenSura Mio Click 2-piece system worked well in warmer months, but winter brought new issues with the baseplate lifting off. A recent CT scan revealed a new parastomal hernia, and a radiologist recommended a different appliance and a support belt.
- Constant adaptation is necessary, including changes in housing, exercise, diet, and clothing, as the body continues to change during the first year after surgery.
Advice and insights include:
1. For parastomal hernia and leakage:
- Consider using the Coloplast SenSura Mio Convex Flip 2-piece Click barrier, which is designed for hernias and irregular contours.
- Reinforce the edges with Coloplast Brava Elastic Barrier Strips – Curved, applying one on each side.
- Continue using the current SenSura Mio Click pouches with the new Flip barrier.
- Wear a hernia support belt full-time; the Nu-Hope 2-inch belt is recommended for comfort.
2. Mindset and long-term expectations:
- Leaks and appliance changes are ongoing concerns, even years after surgery. Adopting a problem-solving attitude can help reduce anxiety.
- Progress is not always linear, and new issues may arise as bodies and stomas evolve. Engaging with the community can provide reassurance.
3. Dealing with neuropathy and mobility issues:
- Others with similar chemo and surgery timelines report ongoing numbness but remain hopeful. Stair-walking and gradual activity have helped regain a normal gait.
4. Custom appliance solutions:
- If commercial baseplates fail, consider creating custom baseplates, securing them with prosthetic glue and belts. Manufactured bags can then attach to the custom base, potentially allowing for multi-month wear times.
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