Living with primary biliary cholangitis (PBC) means learning to continue to enjoy life while managing the daily challenges that PBC brings. This includes family, work and leisure time, which often includes travel.
PBC doesn’t mean losing out on the joy of travel. As with any chronic disease, you will need to adapt your expectations to fit your health and state of mind by planning ahead, maintaining your medication and healthy diet and starting out small.
The chronic, autoimmune liver disease known as primary biliary cholangitis or PBC (formerly primary biliary cirrhosis) affects the small bile ducts within the liver. The body attacks the bile ducts, progressively destroying them, which leads to a buildup of bile in the liver. This damages the liver tissue causing fibrosis and cirrhosis, and eventually liver failure in the most severe cases. There is no known cause but environmental and genetic risk factors include smoking and a family history of PBC.
Symptoms most commonly include fatigue and itchy skin (pruritus), as well as brain fog, joint pain, abdominal discomfort and jaundice. The severity of symptoms varies from person to person and at different stages of the disease, with some people experiencing no symptoms at diagnosis and over several years after.
Learn more about PBC signs and symptoms
Treatment includes medication to slow disease progression as well as lifestyle changes to adopt a healthy diet to support liver function and manage symptoms.
Preparing for your trip
Invest some time in researching where you’d like to go, transport and accommodation options and local things to see and do. Keep in mind that you’ll need to maintain a nutritious diet, stay hydrated and remain as active as possible. By supporting your liver function, you will help avoid flare ups, which could disrupt or prematurely end your trip.
While planning your trip, check in with your doctor about your plans. You may also require a pre-travel evaluation. Choose a destination where you’ll have access to medical care, in case of emergencies. Take along a copy of your essential medical documentation, as well as your healthcare cover information.
When packing, be sure to include all PBC medication for the length of your stay, your vitamins and any items you use regularly to manage your symptoms (creams, cool packs, clothes in natural fibers etc).
Planning ahead will reassure you and your inner circle, and it can limit the potential for stressful situations.
During your trip
Try to take it easy without too much sightseeing or physical exertion. Pace yourself and enjoy the time away, without overdoing it. You will appreciate the benefits of spending some time relaxing and making the most of your time away.
Leaving your comfort zone and traveling with PBC might feel daunting, but it is possible if you have realistic expectations and prepare for all eventualities. It may also give you a boost, mentally and physically to get out of your daily routine.
