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41,451 members
Feb 12, 2010

Feeling Overwhelmed and Insecure After My Colostomy

This topic is about someone who recently had a colostomy and is feeling overwhelmed with the changes and challenges that come with it. They are dealing with adhesive issues and emotional overload just four weeks after their surgery. Here are some insights and advice shared by others who have been through similar experiences:

- Before the surgery, they experienced severe constipation and hoped the operation would solve this, but the early results have been disappointing.
- They are struggling with adhesives and pouches not sticking properly, feeling as if the adhesives are not compatible with them.
- The stoma is still changing size, which is expected to take 8-12 weeks, leaving them uncertain about what is normal at this stage.
- They have only shared their situation with a few friends and rely mainly on their supportive husband, feeling insecure about explaining the surgery to others.

Additional information from the person includes:
- They continue to have issues with pouches not working well for them.
- An additional surgery is planned for after April, and they are waiting for a referral to another specialist.
- They have expressed gratitude for the support received and plan to update their profile.

Advice and insights from others include:

1. Emotional support:
- The first weeks or months are often the hardest, but life becomes easier and more routine over time.
- Use forums, journals, local support groups, and trusted family to talk openly. Solitude is okay, but avoid total isolation.
- Allow yourself to have down days, but try to project yourself a few months ahead and imagine resuming ordinary activities.
- Humor can be helpful; sharing jokes and reading about others' experiences can show that everyone has challenges and survives.

2. Telling others:
- Share your situation only when you feel ready, starting with the most supportive people. How you present it will influence their reaction.

3. Adhesive and pouch problems:
- Many people experience leaks and issues with barriers lifting in the early weeks, but it improves with practice.
- Stoma swelling usually decreases after 8-12 weeks, so cutting the wafer to the current stoma size is important.
- Order free samples from various manufacturers and keep trying different products until you find what works.
- Explore forum threads for specific product combinations and tips on getting the adhesive to stick.
- If the flange loosens when sitting or bending, try different barrier shapes, stoma-guard boxer shorts, ostomy belts, or high-waist undergarments.

4. Daily life and self-image:
- Many people return to work, sports, and relationships once they master using the appliances.
- Body image concerns are common, but partners often accept the ostomy more easily than expected. Specialized underwear, pouch covers, and decorative wraps can boost confidence.

5. When nothing works:
- Keep advocating for yourself with doctors and WOC nurses. Revisiting stoma placement or considering revision surgery may be necessary, and seeking a second specialist is normal.
See full discusison
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