This topic is about managing the challenges of living with a high-output ileostomy, pre-diabetes, and severe fatigue, while seeking alternatives to the medication loperamide. The person sharing their experience has been dealing with these issues for quite some time and is looking for advice and support to improve their quality of life.
Here are some helpful suggestions and insights:
1. Seek new or additional medical input:
- Consider changing your gastroenterologist, colorectal surgeon, or general practitioner, or at least get a second opinion.
- In the UK, you can request a change of consultant through the NHS, and some hospitals have specialist clinics for high-output stomas.
- A thorough medical check-up should include blood tests (active B12, magnesium, electrolytes, glucose) and a scope to rule out other conditions like ongoing inflammation or short-bowel issues.
2. Investigate possible causes of fatigue:
- Ensure you are well-hydrated, as high-output ileostomates often experience chronic dehydration.
- Check for sleep apnea, as using a CPAP machine has helped some people with similar fatigue issues.
- Monitor your blood pressure, as very low levels can lead to feeling faint or collapsing.
- Screen for vitamin and mineral deficiencies, such as B12, magnesium, and iron, and address them promptly.
3. Consider alternative or additional medications:
- Diphenoxylate-atropine (Lomotil) and liquid loperamide for precise dosing.
- Codeine phosphate or other opioids in carefully managed low doses.
- Tincture of opium has been used by some for better bowel management.
- Antibiotics like Flagyl (metronidazole) and Ciprofloxacin for suspected diversion colitis.
- Rectal steroid foam, such as Colifoam, may be helpful.
- Discuss the possibility of diversion colitis with your doctor, as it has been recognized since 1974.
4. Explore hydration and dietary strategies:
- Use St Mark’s Oral Rehydration Solution, which you can find recipes for online.
- Work with an experienced stoma dietitian to adjust your fluid intake and food choices.
- Some people find magnesium supplements beneficial for bowel function.
5. Try different dosing tactics:
- Combine or alternate several medications to manage stoma output effectively.
- Review your loperamide schedule, including the type (tablet vs. instant) and total daily dosage.
6. Focus on mental health and social support:
- Psychological counseling can be beneficial alongside medical treatment.
- Many people experience similar feelings of depression, sometimes described as PTSD; maintaining hope is important.
- Join local ostomy support groups or online communities for connection and support.
- Consider using dating apps, as many partners are understanding and accepting.
- Gradually resume activities you enjoy, like singing or exercising, to reduce feelings of isolation.
7. Adopt perspective and coping techniques:
- Avoid comparing your life progress with others; focus on your own journey.
- Volunteering or visiting children’s hospitals can help shift your perspective.
- Differentiate between needs (food, warmth, love) and wants, and set small daily goals to cultivate a sense of achievement.
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