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Sep 30, 2021

Seeking Tips for Post-Ileostomy Exhaustion

This topic is about someone who, seven months after having a permanent ileostomy, is still dealing with overwhelming daytime sleepiness and fatigue, similar to what they experienced before the surgery. While other health issues have improved, this persistent tiredness is concerning for both the individual and their family. They are looking for practical ways to overcome this challenge.

Here are some helpful suggestions and insights:

1. Consider comprehensive blood tests:
- Check the B-vitamin panel, especially B12.
- Test for iron, ferritin, and hemoglobin to rule out anemia.
- Include a micronutrient panel through a dietitian to identify any specific deficiencies.
- Add a thyroid panel (TSH, T3, T4) and vitamin D level, as deficiencies can cause or worsen fatigue.
- Monitor sugar and insulin levels, as people with an ileostomy can be prone to pre-diabetes.

2. Look into other medical causes:
- Consider a sleep study for sleep apnea; using a CPAP machine can significantly reduce daytime tiredness if diagnosed.
- Low blood pressure can cause sudden energy crashes; track your readings and learn counter-measures like staying hydrated, adjusting salt intake, and maintaining good posture.
- Discuss chronic pain, chronic fatigue syndrome, or ongoing inflammation with your primary doctor, as these can drain energy.

3. Address nutrient absorption issues:
- If malabsorption is confirmed, consider alternative delivery methods for nutrients like B12 and iron, such as sub-lingual, injections, or IV.

4. Focus on hydration and diet:
- Without a colon, fluid loss is higher, so increase water and electrolyte intake.
- Review your diet with a registered dietitian, focusing on balanced macronutrients, reduced sugars and carbs, and adequate protein. Some people have experienced weight loss and increased energy after reducing sugar and alcohol intake.

5. Understand the recovery timeline and set expectations:
- Major abdominal surgery can take over 12 months for full recovery, and individual experiences vary.
- Gradually increase physical activity once medically cleared, as moving more can help break the cycle of fatigue and lethargy.

6. Check mental health:
- Rule out or address depression, as it can manifest as sleepiness.

7. Try practical self-management tips:
- Keep a diary of symptoms and activities to find patterns between fatigue and factors like meals, hydration, blood pressure, and sleep quality.
- If one doctor dismisses your concerns, seek another opinion. Specialists who ordered vitamin D or thyroid tests have resolved similar cases for others.

8. Stay encouraged:
- Many people have reported that their energy eventually returned after correcting lab results and allowing time for full healing. Patience and proactive follow-up are important.
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