This topic is about someone dealing with severe blockages in their ileostomy, which is causing significant pain, vomiting, and malnutrition. They are considering a diagnostic procedure called Cellvizio to find relief. Here are some helpful insights and advice for managing such a challenging situation:
1. Seek new, responsive medical care immediately:
- Consider traveling if necessary to find a competent colorectal or ostomy surgeon or a gastroenterologist experienced with complex blockages.
- Be persistent with the GI office, calling every couple of hours if needed. After-hours calls should reach the on-call physician. Insist that a GI specialist, not just an ER doctor, evaluates you when you go to the hospital.
- If symptoms worsen, go directly to the ER, refuse discharge until you are hydrated and assessed, and have your primary-care physician intervene.
2. Nutrition and hydration strategies:
- Use high-calorie liquid supplements like Ensure to provide protein, calories, and vitamins when solid food is not an option.
- Drink small, frequent amounts of water (e.g., 3–4 oz every 10 minutes) to help with dehydration.
- Some people find that eating marshmallows can thicken output briefly, slow stoma flow, and improve fluid absorption.
- Consider IV hydration, even on an intermittent, outpatient basis, if oral intake is insufficient. Some have received IV fluids at a nursing station every other day.
3. Diet troubleshooting:
- Review low-residue or obstruction-safe food lists and avoid foods known to thicken or constipate, like mashed potatoes.
- Keep most foods well-blended or liquefied until the risk of obstruction is resolved.
4. Pain and output control:
- Opioids like morphine may help slow high-output ostomies, but only use them under medical supervision.
5. Practical and emotional supports:
- Ask family, friends, neighbors, or home-health services for daily assistance with transportation, meals, pets, and follow-up calls. Do not try to manage alone.
- Maintain regular contact with your primary-care physician and request home-nursing or visiting-nurse services if available.
- Seek counseling, prayer, or other supportive practices to combat depression and isolation.
6. Positive report on Lankenau Medical Center:
- One person had recent surgery there by Dr. Gerald Marks and praised both the surgeon and staff, highlighting that effective care is available within the same institution.
7. Product note:
- Ensure nutritional shakes are suggested for calorie and protein replacement.
- Marshmallows are cited as an inexpensive, quick way to temporarily slow stoma output.
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