PBC affects people in very different ways. Because of this it is very difficult to say what impact PBC may have on your life.
For example, many people with PBC may live with very few problems for many years, even decades. On the other hand, PBC can have a major impact on people’s day-to-day lives early on by causing unpleasant symptoms such as very itchy skin.
If your liver has become damaged it can have a major impact on your health. For example:
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it may reduce your body’s ability to digest food properly, especially fats
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it may mean your body does not get enough energy, making you always feel tired (fatigue)
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you may not cope very well with poisons such as alcohol and some medicines.
Diet
Whether you have PBC or not you will help yourself by eating a healthy diet. This means:
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plenty of fruit and vegetables (at least five portions a day)
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lots of carbohydrates (pasta, potatoes, wholemeal bread and rice)
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only a little fat (as little saturated animal fat as possible)
Some people with PBC may need to eat a special diet. If you have any questions about your diet, talk to your GP. You can ask to be referred to a registered dietician for some personal advice.
If you have any of the following you should definitely see a registered dietician about the right food and drink to eat.
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cirrhosis
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fluid building up in your abdomen (ascites) or leg (oedema)
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mental slowness or confusion (encephalopathy)
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diarrhoea where the stools are pale, bulky and difficult to flush away (steatorrhoea).
Problems with fat
Some people with PBC have difficulty digesting fat. This leads to a type of diarrhoea called steatorrhoea (see above). Some people may also feel sick and bloated. If this happens to you, apart from seeing a registered dietician, you may find that a low fat diet helps to reduce the diarrhoea, abdominal pain and any other discomfort from the steatorrhoea.
Fat is essential and should not be cut out of your diet completely without proper advice from a dietician. Fat is an important source of energy, so if you do have to cut it out you may need to eat more carbohydrates for more energy.
Some people may need to have energy supplements and injections of fat-soluble vitamins. Others are prescribed medium chain triglycerides (MCT) which are fats that are easier to digest.
Heartburn
PBC may cause some people to experience an unpleasant taste in their mouth, or heartburn – a severe pain in the chest that can be mistaken for heart problems. Stomach acids escaping into your food pipe (oesophagus) are the usual cause of this sensation.
If you get heartburn you may find that eating small amounts often helps. Avoid big meals and spicy food. It is a good idea to always carry something to eat, preferably food high in carbohydrate such as a barley sugar or boiled sweet.
Alcohol
Alcohol is actually a poison dealt with by the liver. If your liver is damaged it may mean that you have difficulty coping with alcohol and many people with PBC find they can no longer drink alcohol. Others may find they can only drink a little alcohol now and then, perhaps on a special occasion.
Sensible drinking advice varies from person to person. It will depend on many different things, such as how serious your liver problems are and on your general health. Your doctor will be able to advise you.
Energy levels
Always feeling tired is caused by your liver being unable to provide enough energy for the rest of your body. This means that, carrying out day-to-day tasks can be exhausting. You may find that making changes to your lifestyle can make a big difference, such as:
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pacing your activities
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doing gentle exercise, such as walking and swimming, which can help to make them fitter without becoming exhausted
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changing your hobbies and daily activities
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if you are able, giving up your work or doing it part-time.
PBC can also affect your life in the following ways.
Caution with medicines
Talk to your doctor before taking any medicine or treatment. Many medicines may have unwanted side effects that are usually dealt with by your liver, which may not be working very well. For example, it is best to take paracetamol (but never more than four 500mg tablets in one day) rather than aspirin for day-to-day aches and pains.
Thinning bones (osteoporosis)
As we get older our bones often become thinner and weaker. This is more common among women, especially after the menopause. PBC may make this worse. You can help to stop this problem by doing plenty of weight-bearing exercise and eating food with plenty of calcium such as skimmed milk.
Sometimes, despite these efforts, medicine is needed. You may be advised to take calcium supplements, a ‘bone enhancing’ medicine called a biophosphate or a course of hormone replacement therapy (HRT), for example.
Bone loss can be detected with a special type of X-ray called a “Dexa Scan”.
Higher risk of bleeding
With PBC you may be more at risk of bleeding because your liver is less able to make the chemicals needed to clot blood. This means that before treatment you need to tell people such as your dentist that you have PBC so they can take special care. But remember, there is no evidence that PBC can be passed on from contact with blood.
Many complementary and alternative medicines are available that may ease the symptoms of liver disease. But certain medications used in non-liver related dissease can damage the liver. At present, healthcare professionals are not clear on the role and place of some therapies in managing liver disease. More research needs to be done on the use of these therapies. You may wish to discuss the use of these therapies with your doctor.