This topic is about dealing with the challenges and emotional setbacks that can occur after ileostomy surgery. A person shared their experience of feeling low after facing several issues, such as skin irritation, leaks, exercise restrictions, and emotional struggles. Here are some helpful insights and advice for managing these challenges:
1. Preventing Pouch Overfill and Travel Leaks:
- Empty your pouch before traveling and keep an emergency kit in your car or handbag. This could include a men’s urinal bottle or small strong bags, disposable liners, antibacterial gel, wet wipes, and air freshener.
- Consider using a high-output appliance for long trips.
- Adjust your seatbelt to avoid pressing on the pouch.
2. Managing Skin Itch and Possible Yeast/Fungal Issues:
- If you suspect an allergy to the adhesive, try samples of different base plates from suppliers.
- Use skin-barrier products like Cavilon cream or barrier sprays.
- Apply antifungal powders under the wafer if needed and keep the area dry.
- If the redness blanches when pressed, it’s likely irritation; if it stays red, it might be an adhesive allergy.
- Non-scented roll-on deodorant on the skin before applying the wafer can help reduce sweat-related issues.
3. Trying Different Pouching Systems:
- Experiment with different pouch samples; some users recommend SenSura pouches for secure adhesion.
- Use absorptive sachets inside the pouch to thicken liquid output and reduce sloshing.
4. Food and Hydration Tips for Watery Output:
- Use thickeners like bananas, potatoes, pasta, bread, crackers, and marshmallows.
- Reduce high-sugar drinks that can thin output.
- Drink at least 1 liter of fluid per hour of exercise and include electrolyte solutions.
5. Exercise and Weight Control:
- Engage in gentle activities like daily walks, light housework, or gardening, and monitor hydration.
- Water exercise is beneficial; if the local pool is closed, look for other facilities.
- Consider seeking a second opinion on exercise restrictions from a stoma nurse.
6. Vitamin and Supplement Considerations:
- Ask about liquid or chewable multivitamins with minimal fillers.
- For cold sores, taking L-Lysine tablets at the first sign can help.
7. Emotional Coping:
- It’s normal to feel angry or sad; venting can be therapeutic.
- Focus on successes, like a year without leaks and having a supportive partner.
- Connect with other ostomates for shared experiences and humor.
- Remember that everyone has bad days, not just ostomates.
8. Professional Help:
- Request a referral to an experienced stoma nurse and a dietitian familiar with Crohn’s and ileostomies.
- Discuss antifungal treatments, appliance options, safe exercise plans, and nutritional supplements with your healthcare team.
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