This topic is about coping with the emotional and physical challenges that come with having an ostomy, especially in the early stages. The person sharing their experience is dealing with feelings of "Why me?" and is trying to adjust to life with a stoma. Here are some pieces of advice and insights shared by others who have been through similar experiences:
1. Emotional Adjustment
- It's normal to ask "Why me?" but try to shift your perspective to "Why not me?" and focus on survival and future possibilities.
- Mourning the loss of your old body is part of the process. Allow yourself time to adjust, celebrate small victories, and consider professional counseling if needed.
- Venting in forums, joining in-person support groups, or attending events like the United Ostomy Association of America conference can be helpful.
2. Physical Healing of the Rectal/Perineal Wound
- Consider using incontinence pads instead of menstrual pads for better absorption and less skin irritation.
- Healing can take 4–6 months, and ongoing drainage is common during this time.
3. Pouching, Skin Care & Wear Time
- Experiment with different change schedules; many find changing every 3–4 days works best, while others extend to 6 days by applying gentle heat after applying the appliance.
- Establishing a reliable skin care routine can boost your confidence. Using micropore tape around the flange can provide extra security during activities.
4. Product Tips
- The Coloplast two-piece system with Velcro® tail closure is noted for its reliability.
- The warm bean-bag method can help extend wear time.
- Discuss options like BCIR and irrigation with your surgeon if you have a colostomy.
- The P-Stim neuro-stimulator is recommended for peripheral neuropathy pain, but check with your insurance first.
5. Clothing & Body Image
- High-waist trousers, skirts, pull-on capris, or longer tops can help conceal the pouch. Many people return to activities like swimming and skiing.
- View your ostomy as a "scar from defeating a killer," and remember that those who truly matter will accept it.
6. Travel & Activity
- Always carry a full change kit and an extra outfit for day trips, work conferences, or travel. This makes various activities more manageable.
- Traveling in a motor-home or camper can provide a private bathroom, which might ease anxiety initially.
7. Irrigation (for Descending/Sigmoid Colostomies Only)
- Some people achieve full control for up to 24 hours, allowing them to wear only a stoma cap. Tutorials are available online, but consult an ostomy nurse before starting.
8. Mental Resilience Resources
- Inspirational quotes like "Head up, chin up, bag tight," and Khalil Gibran’s “Out of suffering have emerged the strongest souls” can be uplifting.
- Practices like faith, mindfulness, and gratitude can be beneficial, as can setting new goals such as exercise, singing, travel, or spending time with grandkids.
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