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Mar 14, 2016

New to Ileostomy and Seeking Advice and Friends

This topic is about a young woman named Zoe who is adjusting to life with a loop ileostomy after several surgeries. She's facing some challenges and is looking for support, advice, and ways to feel more confident in her new situation. Here are some helpful insights and advice for anyone in a similar position:

1. Navigating Online Communities:
- Private messaging on some sites may require a paid membership, but free options like public chat rooms or features like "winks" are available.
- Consider joining free online communities such as The American Ostomy Club, Inspire, or Ostomyland, as well as closed Facebook groups for support.

2. Finding Support Groups:
- Local ostomy association meetings can be very beneficial. It's recommended to attend a few times before deciding if they're right for you.
- Hospital visitor-support volunteers and peer groups can provide valuable insights and support from those who have been through similar experiences.

3. Choosing the Right Appliances:
- Switching to opaque pouches can increase comfort and confidence. The Hollister tan, 9-inch, one-piece open-drain pouch is noted for being discreet.
- Bag covers can add discretion, and you can either purchase them or make your own from materials like stretch shorts.
- DIY compression or support garments with an interior pocket for the pouch can be helpful.
- Molded wafers may help reduce leaks for some users.

4. Managing Output:
- To manage output consistency, avoid medications like Lomotil or Imodium. Instead, thicken output with fiber if it's too thin, or increase fluids if it's too thick.
- Gas build-up is common, so consider using vented pouches or discreetly "burping" them.

5. Dealing with Adhesive Issues:
- Use adhesive-remover wipes or sprays before applying a new wafer to protect your skin and make cleanup easier.

6. Embracing Lifestyle Changes:
- Always carry a spare pouch, wafer, and underwear when leaving home to handle any issues promptly.
- Many long-term ileostomates lead full, active lives, including dating, marriage, work, sports, and travel. Planning and maintaining a positive outlook are key.
- Some people with "temporary" stomas choose to keep them permanently to avoid future health issues. Acceptance often grows over time.

These insights aim to help anyone new to living with an ileostomy find the support and confidence they need to navigate their new lifestyle.
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