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Jul 09, 2011

Ileostomy Reversal - One-Year Journey and Seeking Advice for Long Car Trips

This topic is about someone who has been living with a direct ileostomy reconnection for a year after undergoing treatment for rectal cancer. They are sharing their experiences and seeking advice for managing their condition, especially as they prepare for a long car trip. Here are some insights and tips they have gathered:

- Bowel function can be unpredictable, with good weeks and challenging weeks. Accidents can still happen, so wearing adult diapers like Depends can be helpful.
- The surgeon mentioned that the colon might take up to two years to adjust and improve, but in the meantime, the sphincter may not always hold up.
- Foods that are generally well-tolerated include white and brown rice, rice noodles, lean meats, chili, steel-cut oatmeal, salads (when near a bathroom), fresh or steamed vegetables, soy milk, honey, good whiskey, and small amounts of red wine.
- Foods that tend to cause problems include pasta, potatoes, onions (the worst), "empty" carbs, beer, and ice cream.
- A South Beach-style diet, which is higher in fiber and moderate in fat, seems to work better than a very low-fat diet.
- High-sugar foods like marshmallows have not been helpful.
- Skipping a meal before performing or traveling can help reduce accidents, but waiting too long to eat can lead to a late-night "attack."

For the upcoming 14-hour car trip from Baltimore to Maine, here are some practical tips:

1. Plan for frequent breaks and stop whenever necessary instead of trying to drive for long stretches without stopping.
2. Consider taking 1–2 tablets of Imodium (loperamide) before traveling to help reduce urgency, but be careful to avoid constipation.
3. Protect the anastomosis and anal area by using Anucort (hydrocortisone) rectal suppositories to calm inflammation and a "donut" or ring cushion to ease pressure and pain during long periods of sitting.
4. To improve stool consistency and digestion, try probiotics containing Bifidobacteria and enzyme-rich tropical fruits like pineapple and papaya.
5. Continue using Depends or similar absorbent underwear during the trip in case of unexpected leakage.

Some perspectives from others include:

- Reversal outcomes can vary; some people find that a permanent stoma offers better control than a direct reconnection.
- It's important to have full and honest information from doctors about the challenges that can arise after a reversal.
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