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Nov 11, 2010

Adjusting to Life After an Ileostomy: Seeking Advice and Support

This topic is about a new ileostomy patient who is facing several challenges after surgery. She is dealing with leaks, itching, and emotional adjustment issues. Here are some helpful insights and advice for anyone in a similar situation:

1. Emotional and Social Support
- Consider joining a support group through the United Ostomy Associations of America (UOAA). They offer a list of groups, including 20 in Illinois, and can connect you with a Certified Ostomy Visitor for personalized support.
- Engage with online forums and chat rooms to connect with others who have experienced similar situations.
- Understand that feeling a range of emotions is normal. The process of adjusting can take time, often up to a year or more, so be patient with yourself.
- Keep supportive friends and family close. Many partners are eager to learn and help.

2. Understanding the Surgery
- Learn the difference between an ileostomy and a colostomy. An ileostomy involves the end of the small bowel and has continuous, liquid output, while a colostomy involves the colon and has more formed, predictable output.
- Watch educational videos like the “Anatomy Apron” for a better understanding of your surgery.

3. Leak Prevention and Appliance Tips
- Experiment with different barrier rings, stoma pastes, or flange-adhesive glues to find what works best for you.
- Warm the wafer with a hair-dryer before applying it to improve adherence.
- Consider trying different pouching systems. There are at least six manufacturers, and you can request free samples to find the best fit. One recommended product is the Coloplast SenSura shallow base plate, product 15537.

4. Managing Watery Output
- Use gelling sachets like “ileogel” in your pouch to thicken liquid output and reduce leaks.

5. Itching and Skin Care
- Clean the skin around your stoma without soap to avoid residue.
- Apply calamine lotion or another anti-itch product that is safe for broken skin.
- Use skin-barrier wipes, such as Barrier 3344E wipes, to protect your skin.

6. Stoma Bleeding
- Small amounts of bleeding when wiping are normal. However, if the bleeding is more than a teaspoon or persists, contact your surgeon or stoma nurse promptly.

7. General Outlook
- Life with an ostomy can still be full and active. Many people with ostomies enjoy activities like swimming, traveling, and even bungee jumping.
- Consider giving your stoma a nickname to lighten the mood and help others feel more comfortable.

Remember, you are not alone, and there are resources and people ready to support you through this journey.
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