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May 19, 2024

1 Year Since Emergency Ileostomy Surgery - Struggling with New Normal

This topic is about someone who is navigating life one year after having emergency ileostomy surgery. They spent a significant amount of time in the hospital and are still finding it challenging to adjust to their new normal. While they have managed to handle bag changes and occasional leaks, they feel that their daily life is heavily influenced by the presence of the ostomy appliance. Here are some of the issues they are facing and advice from others who have been in similar situations:

- Despite drinking a large amount of water or Gatorade each day, they still feel extremely thirsty.
- They need to empty their pouch about five times during the day and once at night.
- They experience exhaustion, dizziness, and fluctuating blood pressure, which was previously stable.
- They feel bored, angry, and unable to return to their active lifestyle. They feel unsteady even with a rollator and fear passing out while seated.
- Lab tests show normal results, which adds to their frustration. They are seeking advice and experiences from others.

Here are some suggestions that might help:

1. Restore sodium–fluid balance:
- Low sodium levels after an ileostomy can cause constant thirst and watery output. Increasing dietary salt might help until cravings subside. It's a good idea to consult with a stoma nurse.
- Easy salty snacks include crackers, pretzels, and potato chips. Adding table salt to meals can also be beneficial.

2. Thicken and slow output:
- Over-the-counter anti-diarrheal medications, like loperamide, can be used if approved by a clinician.
- Foods that can help thicken output include bread, peanut butter, and other binding starches.

3. Diversify hydration sources:
- Instead of relying solely on water or Gatorade, try alternating with drinks like milk, V-8 vegetable juice, coffee, and take small sips of water throughout the day.
- Some people prefer Powerade Zero, which is sugar-free, over Gatorade.

4. Oral rehydration supplements:
- Adding electrolyte powders or tablets like H2Ors to water can improve absorption and help reduce output volume.
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