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Mar 12, 2019

Life with an Ileostomy: One Year Update and Tips

This topic is about someone reflecting on their first year living with an ileostomy. They share their experiences, challenges, and the adjustments they've made to feel more confident and comfortable in their daily life. Here are some of the key points and advice shared:

- In the beginning, there was a lot of stress due to fears of leaks and blowouts. Through trial and error with different systems, they eventually found a reliable routine.
- They now enjoy a wear time of 3 to 4 days per pouch change and have not experienced any failures for six months.
- Clothing adjustments were necessary because the waistline interferes with the pouch. They leave the trouser fly partly open, use suspenders to keep pants up, and choose long shirts for better coverage. They are curious about how others manage similar issues.
- A persistent challenge is needing to empty the pouch two or three times each night, which leads to difficulty sleeping through the night.
- In terms of diet, they generally eat the same foods as before surgery but avoid carbonated drinks and limit foods that cause gas.
- They feel confident enough to plan a long road trip.

Advice and insights from others include:

1. Confidence and Lifestyle
- Many people agree that having an ostomy shouldn't limit activities. With growing confidence, road trips and a normal lifestyle are very possible.
- Initial doubts tend to fade over time, and patience along with experimentation is important.

2. Product Selection and Wear Time
- It's important to try different products until you find what works best for you, as everyone's needs are different.
- Some have found that a two-piece Coloplast pouch system can last up to 10 days.
- Once you find an effective system, extra precautionary items like barrier strips might not be necessary.

3. Diet Management
- Keep track of foods that might cause issues. For example, one person stopped eating Honey Nut Cheerios after it caused a leak.
- Reducing carbonated and very gassy foods can help manage output.

4. Professional Support
- Early advice from a Wound, Ostomy & Continence Nurse (WOCN) can be very helpful. They can reassure you that an ostomy doesn't have to be restrictive, so seek their guidance when you can.

5. Psychological Adjustment
- Celebrate milestones, like the one-year anniversary, to acknowledge your progress and maintain a positive outlook.
See full discusison
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