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Jan 21, 2013

Living with a Colostomy: My Journey and Questions

Living with a colostomy can present unique challenges, especially after undergoing an abdomino-perineal resection (APR) for a recurrent, non-cancerous rectal tumor. This involves adjusting to life with a permanent colostomy and managing the aftermath of surgery, which can include persistent pain and complications. Here are some insights and advice that might help:

- **Irrigation Challenges**:
- The amount and type of food you eat, particularly dietary fiber, can affect the consistency of irrigation returns. Keeping meals and portion sizes consistent may help.
- To improve irrigation effectiveness, try introducing a small amount of water first to clear minor blockages before the main infusion.

- **Managing Late Returns**:
- Spend about an hour on the toilet during irrigation to reduce the chance of residual output.
- Consider switching irrigation to the evening to manage late returns better, and some find it helpful to leave the irrigation sleeve in place overnight.
- Fasting for 3-4 hours before irrigating and eating a light meal afterward can help stimulate the gut.

- **Irrigation Frequency and Technique**:
- Some find that using 1500 cc of water every morning works well, especially with a high-fiber diet, while others prefer 1000 cc every 48 hours. It's important to find what works best for you.
- If you have a peri-stomal hernia, gentle abdominal massage can help with irrigation, and surgical repair might be necessary for easier flow.
- Irrigation sessions typically last 25-40 minutes, and using anti-diarrheal medication the day before can help extend emptying time.

- **Choosing the Right Appliance**:
- Many people continue to wear a pouch for added confidence. Some prefer the Hollister New Image mini-pouch.
- Once you have a predictable routine, you might transition to stoma caps or plugs, but until then, a small pouch can prevent accidents.

- **Dealing with Pelvic or "Phantom Rectum" Pain**:
- Persistent discomfort after APR is common and can be due to rectal mucus accumulation or scarred nerves.
- Nerve healing can take time, and while gradual improvement is possible, some may need long-term medication.

- **General Encouragement**:
- Allow your body time to adapt and track your diet, irrigation timing, and results to identify patterns.
- Stay flexible, as you may need to adjust techniques as your lifestyle or anatomy changes over time.

These insights aim to help you navigate daily life with a colostomy more comfortably and effectively.
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