This topic is about finding gratitude in moments without pain for those living with an ostomy. A 62-year-old woman, who has had an ileostomy for over 40 years, shares her experience of recognizing and celebrating pain-free moments. She encourages others with ostomies to do the same and asks if they have similar experiences. Here are some insights and advice shared in the discussion:
- **Background**: The woman was diagnosed with Crohn’s at 20 and enjoys traveling and activities like dancing, golf, and bowling. She is mostly pain-free but occasionally experiences cramping or lower-back pain.
- **Travel Tip**: She suggests Malta as an affordable and beautiful side trip from the U.K. and is open to questions about accommodations.
- **Pain Management**:
1. Conduct a daily body check and rate your pain from 0 to 10. Recognize that not all pain is severe and let minor aches remain minor.
2. Start your day with gentle movements like stretching and wiggling toes to assess your baseline for the day.
- **Living with Chronic Pain**:
1. If common pain relievers are not an option, manage pain by pacing activities, wearing supportive shoes, taking rest days, and maintaining a positive mindset.
- **Odor and Leakage Management**:
1. Use deodorizing drops or sprays like M-9, Na’scent, or Safe n’ Simple.
2. Consume foods and drinks like cranberry juice, apple juice, tomato juice, and parsley to reduce odor. Yogurt can help if you tolerate dairy.
3. Change your appliance system before long outings to prevent odor from wafer breakdown.
4. For persistent odor, check for infections and ensure a good seal with your appliance.
- **Hydration and Non-Dairy Options**:
1. Consider low-fiber, non-dairy fluids like pressed coconut juice, almond milk, and rice milk, which are often well-tolerated.
- **Output Control**:
1. Those with motility issues might use liquid diets and, for colostomies, twice-daily irrigations.
2. Foods like yogurt, rice, and applesauce can thicken stool, which is helpful for some but may be problematic for others.
- **Skin Adhesion and Travel**:
1. Be prepared for humidity and travel to affect wear-time; carry extra supplies and plan for rest after travel.
- **Stoma Placement and Surgery**:
1. Proper stoma siting by an experienced WOCN can improve quality of life, and sometimes surgical revision is necessary for difficult placements.
- **Psychological and Social Well-Being**:
1. Engage in activities you love with practical adjustments, like wearing comfortable shoes and resting afterward.
2. Remember that a stoma is often invisible to others, and confidence grows with experience.
3. Join online communities and attend conferences for support and shared knowledge.
- **Products and Resources**:
1. Deodorants: M-9, Na’scent, Safe n’ Simple.
2. Drinks: pressed coconut juice, almond milk, rice milk.
3. Organizations and media: UOAA conferences, The Phoenix magazine, and the book "Stanley and Me Make Three" for new ostomates.
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