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Jan 21, 2010

Questions about ileostomy experiences and concerns - seeking advice and support

Living with an ileostomy can be quite an adjustment, especially when it comes unexpectedly, like after an accidental bowel injury during surgery. Here are some insights and advice that might help:

1. Occasional small, mucous bowel movements and gas passed rectally are normal. This happens because the body continues to produce mucus as a lubricant, even if stool no longer passes through that route.

2. Sleeping through the night without having to empty the pouch can be challenging. Many people naturally wake up when the pouch is full or leaking. Setting an alarm for a specific time, like 3 a.m., to empty the pouch can help. Some find that using sleep aids allows them to fall back asleep easily, while a support belt can add security and reduce leaks. Remember to vent the bag each time you get up to urinate to prevent gas buildup.

3. If you're experiencing frequent night-time leaks, it might be worth checking the fit of your pouch and wafer. The stoma can change shape, especially in the first year, so you might need a different size or system. Consulting with an ostomy nurse and trying alternative products can also be beneficial.

4. Burning or pain at the stoma can occur if stool contacts exposed skin. Using stoma powder at each change can help. Certain foods like pork, potato skins, fruit skins, sour cream, corn, nuts, and raw vegetables might trigger burning. Try eliminating these foods one at a time and introduce calming foods like plain yogurt. Chewing thoroughly and avoiding tough skins can also help until your gut adapts.

5. When it comes to food tolerance, experiences vary. Generally, baked or grilled chicken, eggs, white bread, peeled potatoes, and plain yogurt are well-tolerated. Problematic foods often include corn, greens, nuts, raw fruit and vegetable skins, pork products, sour cream, and high-fat items.

6. Experiences with ileostomy reversal can vary widely. Some people regain near-normal bowel control, while others experience high frequency. The presence of adhesions might complicate surgery but doesn't necessarily prevent success. It's important to discuss expectations with your surgeon and talk to others who have undergone reversals to get a better understanding.
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