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Jan 20, 2025

Virtual Second Opinions for Chronic Ileostomy Issues

This topic is about a parent seeking advice on virtual second-opinion services for their adult son, who has an ileostomy and is experiencing frequent blockages that are not related to food. Despite trying various treatments and having supportive medical teams, the blockages persist, leading to hospitalizations. The parent is considering virtual consultations with Mayo Clinic or Cleveland Clinic due to travel difficulties and is looking for feedback on these services.

Here are some helpful insights and advice shared by others:

1. Re-evaluate for adhesions or scar tissue: It's suggested to repeat imaging tests like MRIs or have a surgical review to ensure no adhesions are causing the blockages.

2. Consider targeted motility testing:
- A gastric emptying or "transfer" study can help measure how quickly food moves from the stomach to the intestines.
- A Sitz-marker test can track motility through the small bowel.

3. Explore specialty care at Cleveland Clinic: Some people have had positive experiences with thorough case reviews and recommend consulting a motility specialist there.

4. Investigate additional regional centers if virtual options are not feasible: Institutions like Duke University Hospital, UNC, Atrium Health, and Wake Forest Baptist Medical Center are noted for handling complex gastrointestinal cases.

5. Obtain a dedicated gastroenterology evaluation: Even after surgery, it's important to rule out any functional or structural issues that might not show up on routine imaging. An endoscopic assessment, or "getting scoped," is advised in similar blockage scenarios.
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