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Dec 28, 2019

Managing Atrial Fibrillation with an Ileostomy on Long Trips

This topic is about managing blood thinners for atrial fibrillation (A-fib) when you have an ileostomy and are traveling. A person with A-fib was prescribed the anticoagulant Eliquis (apixaban) and experienced challenges during a cruise due to increased bleeding from their stoma, which required more frequent changes of their ostomy appliance. They sought advice from others on how to handle such situations. Here are some insights and advice shared by others:

1. Bleeding is a common issue when taking full-strength direct-acting oral anticoagulants (DOACs).
- People using Eliquis (apixaban) and Xarelto (rivaroxaban) have reported bleeding from the stoma and other minor injuries. Some have had their dosage reduced under medical supervision.
- Even minor injuries like bumps or shaving cuts can bleed more than usual, so it's important to carry extra supplies and be cautious.

2. If long-term anticoagulation is necessary, discuss with your healthcare team:
- Possible dose reduction strategies after the initial high-risk period.
- Mechanical protection options like an IVC (inferior vena cava) filter to reduce the risk of clot migration, as one person did after experiencing pulmonary emboli.

3. Experiences with alternative anticoagulation methods:
- Warfarin was effective for one person in clearing a postoperative leg clot, with no further issues once their INR was stabilized.
- Another person experienced severe dizziness from a combination of in-hospital heparin and metoprolol for rate control, which resolved after stopping the medication.
- Some switched to a daily low-dose Aspirin with a gastro-protective medication after experiencing intolerable bleeding on stronger drugs, though effectiveness and safety should be considered individually.

4. Monitor overall health, not just clot risk:
- Low blood pressure from combined medications can lead to dizziness and falls.
- Fast stoma output can deplete electrolytes, so it's important to replenish them to avoid feeling light-headed.

5. Balancing quality of life with stroke prevention:
- One person chose to stop full-strength anticoagulants against medical advice, opting for an Aspirin regimen that allowed them to function normally.
- Another highlighted the high stroke risk of untreated A-fib and the potential for severe disability, emphasizing the need to balance bleeding, mobility, life goals, and stroke prevention.

6. Practical travel tips:
- Pack at least double the amount of ostomy supplies you think you'll need and know where to find emergency replacements internationally.
- Consider carrying a doctor’s letter explaining the need for large quantities of medical supplies and medications.
- Test any new pouching system at home before a long trip in case your regular products are unavailable abroad.
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