This topic is about learning to live with a permanent colostomy, a journey that can be challenging but also life-saving. The person sharing their story has been living with a colostomy for a year after battling stage-4 cancer and dealing with severe radiation damage. They are seeking understanding and advice from others who have been through similar experiences. Here are some insights and tips shared by others who have walked this path:
1. Mind-set & Coping
- Acceptance often comes gradually. Many find comfort in self-help, engaging in hobbies, and positive thinking. Remembering that the ostomy saved your life can be a powerful motivator.
- Giving your stoma a friendly name can make it easier to talk about and accept.
- Open communication with your partner is important, as they also need support.
2. Getting Out & Living Life
- Don’t let the ostomy hold you back from activities like travel, hiking, or socializing. Many people with ostomies continue to enjoy these activities.
- When going out, sit near exits, carry a small emergency kit, and plan your food intake before big events for peace of mind.
3. Pouching Systems & Leak Prevention
- Experiment with different products to find what works best for your body. An ostomy nurse can provide valuable guidance.
- For better seals, consider using barrier rings or waterproof tape around the flange.
- Larger-capacity pouches can help reduce the need for nighttime emptying.
- Decide between one-piece and two-piece systems based on what gives you the best seal and confidence.
4. Odor & Gas Control
- Use odor-control drops or try natural remedies like Tic Tacs or parsley.
- Gas-control tablets like Beano or Gas-X can be helpful.
- Use filters to release gas discreetly and watch your diet before important events.
5. Liquid Output / Night-time Emptying
- To thicken liquid output, consider using Imodium or pouch gel-packs, and adjust your diet to reduce high-fat and high-sugar foods.
- Protect your skin with barrier wipes and change your pouch promptly if you feel any discomfort.
6. Skin Care & Nutrition Tips
- Eating grated raw carrot daily has been credited with maintaining healthy skin and calm output. A largely vegetarian diet may also be beneficial.
- Stay hydrated and eat balanced meals, chewing well to avoid blockages.
7. Odor-Free Bag Emptying Technique
- Use a drainable two-piece system: empty into a container in the sink, rinse with a squirt bottle, and then pour into the toilet to minimize splash and odor.
8. For the Forum Newcomers
- Look for free samples of ostomy appliances from companies like Hollister, Coloplast, and ConvaTec to try different products.
- Feel free to ask any questions in the community; nothing is off-limits.
9. Reassurance
- Many people with long-term experience report living full, active lives with few limitations once they find the right equipment and routines.
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