Traveling with Short Bowel Syndrome
These tips can help people living with SBS or their caregivers prepare for a more successful travel experience:
Consult a physician
Ask your doctor whether travel is appropriate and what challenges you should expect. Confirm how to reach your physician in case of emergency or so the attending staff at an unfamiliar hospital can reach a doctor familiar with your medical history. The Oley Foundation offers a Packet for Travel and Hospital Admissions template to record your physician’s phone number, your medical history and other vital information.
Arrange for supplies well in advance
Prepare a list of needed supplies in advance to avoid problems during your trip. Your home care company may be able to connect you with an affiliate that can deliver solutions or supplies to your destination so you don’t have to travel with them. Another option is to have your home care provider ship your supplies for you. Explain to the manager of the receiving or security department at the hotel how to handle the supplies, especially if refrigeration is necessary. It is best to arrange this with the hotel when you are making your reservation and confirm again on the day you expect the supplies to arrive. If possible, schedule the supplies to arrive a day in advance or carry at least one night’s worth of supplies.
If you decide to travel with all of your supplies, pack extra in case of loss or damage. Consult your physician’s team or home care company about a back up plan for an extra pump or battery in case you have trouble with your equipment.
Keep solutions cool
Maintain the right temperature for PN while traveling by covering bags and cans with reusable cool packs and ice, and re-cool whenever you have the opportunity. When making a hotel reservation, confirm there is a refrigerator in your room or available, accessible space in the hotel kitchen’s refrigerator. For greater convenience, label and pack items that require refrigeration separately.
Another option is to bring the components of your solution in separate containers, which won’t require refrigeration until the contents are mixed. Although this may be more convenient for storage, you will have to mix them yourself.
Prepare for airport security
Review Travelers with Disabilities and Medical Conditions on the Transportation Security Administration (TSA) website for specific information about screening of medically necessary liquids or equipment. TSA Cares recommends calling a help line, listed on the website, at least 72 hours in advance with questions about screening policies and procedures or to coordinate checkpoint support if needed.
Create a plan for emergencies
Know the location of the medical center closest to your travel destination, the local contacts for home infusion supplies and the names of medical professionals in the area. Your doctor may be able to connect you with a physician familiar with Short Bowel Syndrome or contact the Oley Foundation or Short Bowel Foundation for a list of the Centers of Excellence in the area. Prior to the trip, ask your doctor what steps you should take if you become ill or experience difficulties while traveling.
Learn from other travelers
Connect with people with SBS who are experienced travelers, including those who travel abroad. The Oley Foundation’s website includes detailed travel tips along with contact information for volunteers who can provide advice for your trip.