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Nov 26, 2020

How to Navigate Life After an Ileostomy - Need Advice!

This topic is about someone who is three months into life after an emergency ileostomy and sub-total colectomy. They are finding it challenging to adjust emotionally and physically. Previously active in sports, music, and work, they now feel lost and describe their days as unpredictable. Despite having support from family and a therapist, they are struggling to find motivation and wonder if life will ever feel normal again.

Here are some pieces of advice and insights shared by others who have been through similar experiences:

1. Attitude & Emotional Recovery
- Take things one day or week at a time. The first 6 to 12 months are the toughest, but it does get better.
- Accept what cannot be changed and focus on your reactions. Allow yourself to go through the normal stages of shock, denial, anger, and acceptance.
- Use humor and gratitude. Many people with long-term ostomies lead full, productive lives.
- Counseling or therapy is highly recommended. Many have found it essential, especially if dealing with PTSD or depression.

2. Education & Support Resources
- Keep asking questions and researching products and techniques to regain a sense of control.
- Join local or online ostomy support groups, which can be a great source of practical and emotional support.
- Check out recommended websites like veganostomy.ca for helpful videos and articles.
- Facebook ostomy groups can also provide daily support.

3. Returning to Activities & Work
- Ease back into activities. Watch or talk about sports before playing, and pick up instruments in short sessions for fun.
- Consider translating previous job skills to modified duties or new careers. Career counselors can assist via video sessions.
- COVID restrictions might mean fewer social demands, giving you extra time to heal and adjust before returning to full work.

4. Practical Management Tips
- Be prepared for occasional leaks by having "go-kits" with spare supplies in various places like cars or backpacks.
- Support belts can help secure and conceal the pouch under clothing, boosting confidence in public.
- Keep wardrobe adjustments simple with looser waistbands or longer shirts to hide the bag.
- Sleep disruption is common, so plan for naps and accept that nighttime output may wake you.

5. Mind-Set & Motivation
- Embrace "SISU," a Finnish concept of determination, and focus on reclaiming as many previous interests as possible, even if modified.
- Breathing exercises, laughter, and staying connected with empathetic people can help reduce fear and overwhelm.
- Remember that reaching out, as you have done, is a powerful first step toward regaining control and hope.
See full discusison
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