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Jan 19, 2023

Dealing with Fear of Going Places with an Ileostomy

This topic is about managing travel anxiety when you have a high-output ileostomy. The person sharing their experience has been dealing with challenges like high output, fatigue, and anxiety about leaks, especially when traveling to see their son perform. They are looking for advice on how to feel more secure and comfortable during a long car trip without having to fast. Here are some helpful tips and insights:

1. Leakage Prevention and Security
- Continue using barrier extenders, which can be found on Amazon, to help secure the seal.
- Consider wearing ostomy-specific underwear or using a pouch belt to support the pouch and reduce stress on the seal.
- Keep Micropore tape handy to patch any edge leaks temporarily until you can do a full change.

2. Building Confidence Gradually
- Start with short outings like walks or trips to the movies and gradually increase the duration.
- Familiarize yourself with bathroom locations along your route and make sure to empty your pouch before events to reduce anxiety.

3. What to Pack
- Double up on supplies: flanges, bags, barrier rings, wipes, paper towels, trash bags, puppy pads, and a full change of clothes.
- In the car, have portable plastic urinal jugs, large plastic soda cups, a towel for the seat, a water bottle for rinsing, and a Tupperware container if preferred.
- Bring extra oral rehydration packets, medications, and a roll of tape for emergencies.

4. Managing High Output
- With your doctor's approval, consider adjusting doses of Imodium, Lomotil, or Codeine to slow output.
- Eat foods that can thicken stool, like potato chips, pretzels, oatmeal, or bananas. Gel-based thickening sachets might help overnight.
- Limit food and liquid intake shortly before and during the drive, and always empty your pouch before sitting down.

5. Hydration Without IVs
- Use Oral Rehydration Solutions like St. Mark’s solution or Drip Drop, or make a homemade mix; adding lemon can improve the taste.
- Understand the differences between isotonic, hypotonic, and hypertonic drinks. A dietician specializing in IBD can help create a plan to reduce output and eventually eliminate the need for IV fluids.

6. GI-Comfort Products
- Consider using IB Guard, which are peppermint-oil capsules, to ease cramping and nausea.

7. Mindset and Coping Skills
- Logical preparation can help counter fear; remember that most feared events never happen.
- Techniques like Edward De Bono-style thinking can help manage anxiety.
- Remember, the pouch doesn’t define you. Everyone starts as a new, nervous ostomate and gains confidence over time.

8. Final Encouragement
- Many people with high output travel successfully. Focus on enjoying your son’s performance and trust that you are well-prepared.
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