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Nov 23, 2024

Living with an Ileostomy: Seeking Advice and Sharing Experiences

Living with an ileostomy can be a unique journey, especially when managing liquid output, odor, and social anxiety. If you have an ileostomy, you might be familiar with some of these challenges. Here are some helpful tips and insights to make life a bit easier:

1. Odor Control
- Use Hollister M9 Deodorizer Drops, available in small "eye-dropper" bottles or larger 8 oz bottles.
- Carry a travel-size Lysol Disinfectant Spray for quick odor control.
- Consider inexpensive options like baking powder or mints such as Tic Tacs.
- Flush the toilet as soon as the output hits the water to minimize odor.

2. Thickening and Slowing Liquid Output
- Incorporate Metamucil or other psyllium powders into your daily routine, perhaps in a morning smoothie.
- Eating marshmallows before going out can help slow down output.
- Opt for high-fiber foods, preferably in powder form.

3. Making Emptying Cleaner and Easier
- Place strips of toilet paper on the water surface to reduce splatter.
- Empty the pouch during a flush or cover the automatic flush sensor with a paper towel.
- Use a disposable cup to empty the pouch for better control.
- Sit facing the toilet tank if it feels more stable.
- Keep baby wipes or pre-moistened cloths handy in a zip-lock bag for public restrooms.

4. Reducing Sticking and Easing Flow Inside the Pouch
- Add a few drops of baby oil inside the pouch to help the output slide out easily.
- Be cautious with Velcro closures, as oil may seep through; clamp-style closures are more secure.

5. Pouch Orientation and Support
- Wearing the pouch horizontally can feel more secure and eliminate the need for cutting holes in T-shirts.
- Consider using a support or ostomy belt, like those from Nu-Hope.
- A two-piece system allows for quick pouch changes if preferred over emptying.

6. Attitude and Lifestyle
- Choose not to let Crohn’s or an ostomy dictate your life; embarrassment is fleeting, but memories last.
- Remember, others don’t notice bulges or noises as much as you might think; humor can ease awkward moments.
- Everyone experiences bodily odors and gas; you’re not alone.
- Embrace life—travel, dance, and socialize. It’s just a pouch.

7. Troubleshooting Clip Issues
- Avoid overfilling the pouch; empty it sooner to prevent the clip from popping open.
- Consider pouches with integrated Velcro tails and a clamp backup for added security.

8. Clothing Tips
- Try the "Texas two-shirt" method: an inner T-shirt with a hole for the flange and a regular shirt over it.
- A horizontal pouch with a wrap allows you to tuck in shirts confidently.

9. Diet and Blockage Prevention
- Chew food thoroughly, avoid foods known to cause blockages, and stay hydrated. Monitor fiber intake carefully.

10. Insurance and Suppliers
- Check with your supply company about coverage for M9 deodorizer, as many insurers cover it.

These tips can help you manage your ileostomy with more confidence and ease, allowing you to enjoy life’s moments without unnecessary worry.
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