Intrahepatic Cholestasis of Pregnancy (ICP)
Intrahepatic Cholestasis of Pregnancy (ICP), (formerly known as Obstetric Cholestasis or OC), is a liver disorder that occurs in around one in 140 pregnancies in the UK, where the normal flow of bile out of the liver is reduced.
What is bile?
Bile is a yellow-green fluid produced by your liver which contains:
- chemicals to aid digestion, including bile acids
- waste products for excretion via the bowel.
Bile passes from the liver cells via small ducts to the common bile duct and on into the duodenum (part of your gut). It plays a central role in helping the body digest fat. It acts as a detergent, breaking the fat into very small droplets so that it can be absorbed from food in your gut. It also makes it possible for your body to take up the fat-soluble vitamins A, D, E and K from the food passing through the gut.
What are the causes of ICP?
We do not yet know what causes the restriction of the flow of bile from the liver in ICP. Evidence suggests that it is caused by a combination of hormonal, genetic and environmental factors.
All hormones are metabolised (broken down) in the liver. One theory is that the liver cannot cope with the high levels of hormones during pregnancy (oestrogen and progesterone). This affects the liver’s ability to remove
bile acids efficiently and causes a build up of bile acids in the blood. This is supported by observations that:
- ICP is more common in twin and triplet pregnancies, which are associated with higher levels of hormones. Pioneering Liver Health
- ICP has been triggered in women taking high-dose oral contraceptives (which contain forms of oestrogen and progesterone) and also in women being treated with progesterone.
ICP also has a genetic cause. This means it has been linked to genetic changes making some women more susceptible to the disease and can explain cases where ICP occurs within families and also why it
is more common in some ethnic groups. Although ICP affects one in 140 (0.7%) pregnancies in the UK overall, it is more common in women of Indian
or Pakistani origin, affecting around one in 70 to 80 (1.2 – 1.5%) pregnancies. In other countries, such as South America and Scandinavia, the number of
women affected is higher still.
However these genetic changes do not explain all the causes of the disorder and other factors such as diet and hormones may play a part. Further research is being carried out to investigate these areas.
Some characteristics of ICP suggest that environmental factors may also have a role.
ICP does not always recur in following pregnancies.
ICP can be more common in certain seasons (in the winter months in Chile and Scandinavia).
Cases of ICP have decreased in countries where nutrition has improved.
Women with hepatitis C more commonly develop ICP than those who do not have the virus.
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ICP: Symptoms and Diagnosis
Itching is often the only symptom of ICP. The itching typically begins on the arms, legs, hands and soles of the feet. It may also occur on other parts of the body such as the face, back and breasts. It is usually worse at night, leading to sleeplessness and exhaustion.
Some women scratch themselves so frantically that they make themselves bleed. A few lose their appetite and feel generally unwell. A number of women (thought to be around one in ten) will develop jaundice in pregnancy. However, most women with ICP do not have jaundice.
Itching is not uncommon in normal pregnancy. However, some women may not be aware that they have ICP because they are told that itching is normal in pregnancy. This can be misleading.
Your doctor should ask about your medical and family history to aid diagnosis. If close female family members have been affected by ICP then you may be at increased risk.
It is also important to exclude all other possible causes of your itching, such as allergies or eczema (but it is possible to have a skin condition and ICP). Other signs such as pale stools or dark urine may indicate a problem with your liver, including ICP.
Your doctor can diagnose ICP from blood tests called liver blood tests and a serum bile salt test. Liver blood tests are performed to gain an idea of how your liver is functioning. A number of separate properties of your blood will be examined. Your doctor should use pregnancy-specific reference ranges to interpret your blood test results.
In OC/ICP, doctors will be looking for abnormal levels of the liver enzymes alanine aminotransferase (ALT) and aspartate aminotransferase (AST). Sometimes levels of another enzyme, gamma-glutamyl transferase (GGT), will also be raised. The most specific test involves measuring serum bile salts. In most UK hospitals raised levels would be a measurement of greater than 14µmol/L. However some hospitals may ask you to fast before the test. In this case a fasting level of greater than 10µmol/L would support the diagnosis of OC/ICP.
In most women with ICP, both ALT and bile salt levels will be raised, but just one may be raised at the first test. If the tests are within normal limits and you carry on itching, it is important that the tests are repeated. Unfortunately the serum bile salt test is not available in all hospitals. Your doctor may need to send a sample to another hospital for diagnosis
Women with hepatitis C are at increased risk of developing ICP during pregnancy. A small number of women with ICP may therefore have undiagnosed hepatitis C. If your test results do show that you have viral hepatitis, or another liver condition, you will then be able to be referred to a specialist in liver disease (hepatologist) and receive treatment.
ICP is only completely confirmed when symptoms disappear and liver tests go back to normal after delivery.
Pregnancy and itching
It is important that if you are pregnant and itching, you should check with your doctor or midwife. A simple blood test (see below) is required to diagnose ICP . It may be helpful to take a copy of the leaflet below with you.
There is no cure for ICP. Doctors will monitor your condition, treat symptoms and may advise delivering your baby early.
Topical creams such as calamine lotion and aqueous cream with menthol, are safe and may provide some temporary relief from itching for some women.
A number of medications may be used in your treatment. As yet, a specific medication to manage ICP is not available, although clinical studies are in progress. Medication is currently aimed at reducing the build-up of bile salts in your blood, to relieve the itching and to protect your baby.
Reviewed by:Professor Catherine Williamson, Professor in Obstetric Medicine, Imperial College, London; Jenny Chambers, ICP Support
People who have had a liver transplant are more likely to be at risk of cardiovascular disease than the general population, and have a higher predicted risk of developing coronary heart disease (CHD).
Not only will doctors have to manage these risks but they – and you – must make sure that your cardiovascular health is as good as it possibly can be to help your body cope with the stress of immunosuppression.
The factors that doctors will consider are:
- your age, sex, height and weight
- whether you smoke
- having diabetes before your transplant
- a family history of cardiovascular disease
- any medication you may be taking
CNI and steroid-based immunosuppression regimens used after transplantation can cause an increase in fluid retention and increased appetite. For this reason they are linked with the development ofhypertension and hyperlipidemia (excessive blood fats), weight gain and type 2 diabetes.
In the first months after your transplant you will be on a noadded salt diet to prevent or manage any hypertension. You will be screened yearly to make sure levels of fats known as lipids (cholesterol and triglycerides) in the blood are within the guidelines and target levels set for you.
To avoid putting on extra weight and to exercise weakened muscles following your transplant, you are encouraged to increase your activity level and do some gentle exercise, where this is possible.
Although there are no long-term dietary restrictions following liver transplant, simple rules apply: cut down on fatty foods, sugar and salt, and eat more fresh fruit and vegetables.
People with Hepatitis B and – far more commonly – Hepatitis C make up a large number of transplant recipients. The results of liver transplantation for people with Hepatitis B virus with acute or chronic liver failure and/or primary liver cancer have improved greatly, due to advances in antiviral drugs. Following transplantation for Hepatitis B, people are routinely given Hepatitis B immunoglobulin (HBIG) and lamivudine together with other medications, to prevent the virus from re-infecting the new liver.
Hepatitis C (HCV)
In Hepatitis C the new liver is very likely to become re-infected following liver transplantation. Levels of the virus are at their lowest immediately after transplantation but are likely to reach pre-transplant levels (and can be up to twenty times higher) within a few days of the transplant. It is now known that this happens more quickly than in pre-transplant people. This is due to their weakened immune system caused by high doses of immunosuppressant drugs.
Treatment for recurring Hepatitis C is still developing, and doctors have to take great care in prescribing both Hepatitis C and immunosuppressive drugs. Using antiviral drugs following transplant is aimed at stopping rapid viral replication and to limit damage to the liver. This is usually most effective for mild recurrence of infection but the number of people who report side effects is still high. The best timing for giving antiviral medication after transplantation and the most suitable dosages are still being studied bymedical scientists.
As with normal Hepatitis C infection, post-transplant recovery differs between one person and the next. After a few years some people may have persistent viraemia (detectable virus in their blood) with no significant liver damage, while others may have gone on to develop severe fibrosis and cirrhosis.
No single risk factor can be relied on to predict who will go on to develop cirrhosis after transplantation but medical investigation has focused on the following:
- a high viral load at the time of transplantation
- infection with genotype 1 (especially 1b) or 4
- the time between removal of the donor organ and its implantation in the recipient, known as ischemic time
- the age and sex of the donor – studies suggest progression increases with age and is common in women.
Unfortunately one in five people develop cirrhosis within a year of transplant and a small proportion die of Hepatitis C-related liver disease within five years. However, the overwhelming majority of people who survive the transplant will live without serious damage from Hepatitis C virus infection for the first five years.
Having a liver transplant is a major life event and research shows that such a substantial physical and emotional change can put you under considerable stress. It is therefore common to experience a whole range of emotions and some people will experience psychological problems following their transplant. This is particularly likely for people without good support from family and friends, those who have had problems like depression before transplant and those with substance use disorders.
However, there are studies that show that people who receive a liver transplant also receive psychological benefits. Many people who have problems before transplant, including memory impairment, slow reactions, anxiety and depression that are common in end-stage liver disease, find that the transplant helps these considerably.
It is important to be realistic about life with your new liver and be patient with yourself. Years of living with a serious liver problem, the uncertainty about receiving a transplant and the major physical and emotional toll of the operation itself can take a toll on liver patients and their families. The transplant will not be able to address all these problems and we recommend setting achievable goals and having reasonable expectations of how the transplant can help you live life to the full.
There are many factors you can manage with the support of your family and transplant team. Staying healthy, eating well, attending clinic, taking exercise, getting enough sleep, taking your medicines and raising concerns promptly with the medical team are all important.
Managing your stress levels and keeping a positive attitude are key to maintaining your emotional as well as physical health.
One of the reasons you will have had a liver transplant is to improve your health and quality of life. However, because alcohol is very much part of our culture and way of life, you will need to make decisions about how you approach alcohol in the future.
Alcohol use was not the cause of my liver disease – can I still drink?
In general, drinking alcohol after transplant is not recommended, even for people who have not had alcohol-related liver disease. Alcohol is broken down by the liver and so drinking alcohol places the liverunder extra strain. In the first few months of transplant, it is especially important to protect your liver from extra strain so that it can recover from the transplant and enable the body to heal and liver function to return to normal.
For people who have had their transplants as a result of diseases such as Wilson’s Disease or alpha-1 antitrypsin deficiency, the liver transplant may offer a complete cure. If there are no problems with the medications you are taking, it may be possible to return safely to moderate alcohol consumption. It is best to seek advice from your transplant centre about if and when it is safe to start drinking alcohol.
For most people, however, the transplant will be a treatment rather than a cure for their liver condition. There is a risk that autoimmune conditions, Hepatitis B and C, and NASH can recur in transplanted livers. Consuming alcohol places the liver under further strain and can accelerate the damage that is caused by these conditions. There is further advice in the section below about living without alcohol.
I have had alcohol related liver disease – can I still drink?
If you have had a liver transplant because of alcohol related liver disease you will have been asked to remain alcohol free for the rest of your life. There are several reasons for this.
- Your transplanted liver may not be able to break down alcohol as effectively as your own liver because of the immunosuppressant drugs you are taking. This could mean that relatively small amounts of alcohol could damage your transplanted liver in quite a short period of time
- it is possible that if you started drinking alcohol again you might find it hard to stick to just one drink. When this happens a person can find that they start drinking much more than they intended and quickly go back to drinking at levels that caused their original liver disease
- some people may have undesirable consequences of starting to drink alcohol again. This might include such things as forgetting to take your medication, missing appointments or effects on other aspects of your care. This could affect your transplanted liver and in some cases lead to rejection.
When you were being considered for a liver transplant it is likely that you have signed an agreement to remain alcohol free after your transplant. This is done to help remind you about the importance of not drinking and the reasons why you agreed to be abstinent. It is also part of your acceptance of all the treatment and care offered to you and a demonstration of your commitment to the transplant programme.
The agreement is also likely to highlight the need to maintain contact with the alcohol liaison specialist within the transplant team as well as having routine blood tests to check for alcohol. It is worth remembering that this contact enables the transplant team to spot any potential problems earlier and so offer support and treatment sooner, reducing the likelihood of harm to the new liver.
The most important thing is that you understand the cause of your liver disease and take a decision not to drink alcohol again.
What about shandy or alcohol free drinks – surely they can’t hurt?
People who have had a history of alcohol related liver disease should not drink low alcohol or alcohol free drinks. You might think this seems a bit harsh but,
- Sometimes drinking alcohol free drinks such as Kaliber or Becks LA can trick your brain into thinking that you are really drinking alcohol. When this happens it can cause a desire or craving to drink alcohol again.
- When you are in a social situation or at the pub it is possible to get drinks mixed up and find you have mistakenly drunk some alcohol without meaning to. This risk is reduced if you stick to soft drinks.
- Shandy does contain alcohol. Some people have found that they started drinking a shandy that was mostly lemonade and a tiny bit of lager. Over the course of time the lager can become the bigger part of the drink and you can end up drinking far more than you originally intended. This may cause a return to your original liver disease.
- There are many more types of soft drinks available than in the past.Take your time to experiment with these to find one that you enjoy and feel comfortable with.
- If this is bothering you or you have further questions, talk to the substance misuse nurse at your transplant centre or your liver transplant coordinators.
How can I manage without drinking alcohol?
Before you had your transplant it may have been relatively easy not to drink alcohol. You were probably feeling unwell, had less of a social life and were very aware of the need for abstinence as part of being on the liver transplant waiting list. As you return to a more normal life you may find it harder than you expected not to drink. Below are a few ideas that you might find helpful.
- Reduce the temptation to drink. Don’t keep any alcohol at home, particularly in the fridge
- identify your triggers. These can be certain people or places. Often triggers can be the way we feel, such as when we are stressed, angry, anxious or down. Try to avoid your triggers if you can, or develop a plan so that you are prepared and able to deal with a situation without alcohol
- if your triggers for drinking are difficult feelings such as anger, anxiety or depression, it may help to talk to someone about managing these without drinking. Most of the organisations that work with people to stop them drinking have skills and practical advice to help you with this
- look back at your list of reasons for stopping drinking and remind yourself regularly about why you are giving up alcohol. Remember it is not just about the transplant – you may have noticed other unexpected benefits such as having more money, developing new interests and having better relationships with those you love for example
- keep busy! Boredom is often a reason for drinking or returning to drinking – think about hobbies you have neglected or you want to take up
- change your habits. If having a drink straight after work was something you always did, you will need to alter your routine. Do something else or find another way to relax
- take it one day at a time. It can be very daunting to think about not drinking forever. When it gets difficult try saying to yourself, ‘I’ll just not drink for today.’ If that feels too much, break it down to ‘Just for this morning’ or ‘Just for the next couple of hours’.
- Cravings or urges to drink will pass. You might find it helpful to remember the ‘four Ds’:
1. Delay for at least five minutes so that the urge to drink will pass
2. Drink some water or soft drink you like, and sip it slowly
3. Deep breathe – slow, full deep breaths will control your nerves
4. Distract yourself, do something else to keep your hands and mind busy.
Do also talk to friends, family or alcohol support such as alcohol counsellors, alcoholics anonymous or contact telephone helplines such as Drinkline.
- Don’t try to test yourself. It might seem a useful challenge to deliberately go somewhere you know you might be tempted to drink to see if you can manage to stay off it, but this can be quitedangerous and can lead to a slip back into old drinking habits
- tell close friends and people who you see often about not drinking alcohol and why this is important to protect your health. If you do this, they are likely to be more understanding, put less pressure on you and will make sure that they have a suitable soft drink available for you when you see them
- be convincing! When you are in a social situation be clear about which soft drink you are having, ask confidently and don’t hesitate.
If you seem unsure people are more likely to try and persuade you to drink alcohol instead. It is worth preparing ahead and thinking through scenarios and how you will respond.
Being alcohol free is part of a whole range of things that you need to do in order to keep yourself healthy after your transplant. It is important to take regular exercise and eat a balanced diet especially as some of the side effects of the immunosuppressants make weight gain easier.
Remember alcohol contains lots of calories – even a pint of very weak beer (3.5% abv) can contain up to 180 calories. Exercise is also a useful way of managing stress as well as controlling your weight.
Can I use illicit drugs after transplant?
Many of the reasons for not using recreational drugs are similar to the reasons for not using alcohol post transplant. There may be a tendency to use more of a substance than intended, and under the effects of the drug you might forget to take your immunosuppression medication or keep your hospital appointments (or perhaps simply misjudge them as not very important).
All drugs have an effect on the liver, but in particular, street drugs are notoriously impure, often of unknown strength and frequently containing one or more other drugs as well as contaminants. Whatever the route of administration, these drugs will impact on your judgement, behaviour and affect the liver.
Surely cannabis is OK?
Cannabis is a psychoactive drug. It can aid relaxation (though may also induce anxiety and paranoia). It is linked to untoward effects on motivation and judgement. It is also linked to the “gateway theory”,where people who start using this drug may move onto other harmful drugs. There are some clinical reports of direct effects on the liver. As such, the use of cannabis is actively discouraged.
I am on a methadone programme. Should I stop it?
Some patients who have used opiates in the past (such as heroin) are treated with a substitute medication such as methadone or buprenorphine (Subutex).
Substitute medication is aimed at helping a person to manage cravings for opiates and provide a safer alternative to illicit or unmanaged use. If you are on a methadone or Subutex programme it is likely that you will be under a treatment team for this, either within a drugs clinic or your own GP surgery. It is very important that you do not stop your medication unless you do so as part of a planned detoxification with your drug treatment team, or because your medical team need to stop it for medical reasons. In the case of the latter, your medical team should discuss this with you and your drug treatment team and be aware of the possible complications of this, which could include opiate withdrawal symptoms, reduced tolerance to opiates and craving to use drugs again.
There is also good evidence that people who stop using opiate drugs such as heroin and methadone may sometimes substitute for this by increasing their alcohol use, and so you, your family and your treatment team should be mindful of this.
Alcohol and drug misuse
There are about 500 local advice and counselling centres in the UK. Most of these are funded by the NHS and are free to access. You can look them up in the telephone book or use the directory on the Alcohol Concern website. Alternatively your GP or practice nurse should be able to provide you with details of your local service and arrange to refer you, though in the majority of instancesself referral is preferred and more straightforward.
Diet after liver transplant
You will probably find that you have a better appetite after transplantation than you did before the surgery. Some of the weight gain is also due to the immunosuppressive medications – particularly prednisone. However, for around a third of people after transplant, this is significant (over 10kg or 1.5 stone).
To stay at a healthy weight, it is sensible to reduce your consumption of simple carbohydrates such as food and drink high in sugar. Eating complex carbohydrates such as cereals, vegetables, whole grain pasta, bread, rice and potatoes is a healthier choice. It is also helpful to restrict how much fat you eat, not just to limit weight gain but also to help control your cholesterol which can be a particular challenge when taking some anti-rejection medications.
It is also important to eat sufficient protein to enable your wounds to heal and to build muscle. You may be advised to eat roughly 80g a day of protein, spread over several meals if possible. Protein is found in meat, poultry, fish, eggs, nuts and beans.
Your transplant centre can give you specific dietary advice and refer you to a dietician for any specific problems you have.
When can I go back to my usual routine?
Having a liver transplant is a major operation and people need time to recover. How much time depends on the individual and it can vary from six weeks to six months before people are ready to take up normal activities again. It is a good idea to reduce the length of time you do various activities, such as work, school or exercise, so you can build up your strength. You will probably find that you get tired more easily and it is important to be able to rest whenever you need to.
When can I take up exercise?
Taking up a healthy lifestyle with exercise built-in is an important part of your recovery from a transplant. However, it is important to build up your levels of activity gradually and it will take time to build your strength and endurance. You should avoid strenuous exercise for the first couple of months and check with the transplant centre that this will not cause problems. It is important not to lift heavy items until your wound has healed and for at least the first two months after transplant. Contact sports, such as boxing, should generally be avoided.
What about travel?
You will be advised not to travel long distances away from your transplant centre in the early weeks. After this, it depends on your health and where you are travelling to. Some destinations may put you at increased risk of infection, from anything such as food poisoning bacteria to malaria and you may not be able to receive some of the necessary prevention mechanisms such as live vaccines. It is best to seek medical advice about whether travel to these destinations is advisable at all.
When you travel, always take contact details for your transplant centre with you so you can contact them for advice when you are away.
Sensible precautions such as not travelling if you feel ill, seeking prompt medical advice if you are unwell when away (and telling them you have had a liver transplant), and taking a written list of all your medications and doses are very important.
It is important to remember that your travel insurance will not cover you (or anyone travelling in your party) for health problems that arise, cancellation, or the need to return home early, unless you havespecifically briefed them about your medical history and they have agreed to cover. If you do not have health insurance, it is a good idea to check the cover that might be provided to you in an emergency and whether they have any reciprocal agreements for healthcare, such as participation in the European Health Insurance Card scheme.
Will I be able to have a normal sex life after liver transplantation?
As soon as you feel ready! Transplantation can affect sexual function – men can find that it can take a couple of months for everything to work normally again. Certain medications, too, can have an effect. If you have any problems or concerns you should talk about these with your transplant team when you come to clinic.
Women are not recommended to use oral birth control pills immediately after transplant, and for both men and women, it is important to use contraception because conceptions must be carefully planned if you have had a transplant (see below).
Both women and men have a higher risk of contracting sexually transmitted diseases (STDs) if on immunosuppresants, so take extra care and practice safe sex.
Can I have a baby following liver transplantation?
If you are considering trying for a baby, speak to your transplant team for advice. Some medications (particularly mycophenolate mofetil (CellCept)) can harm the unborn child, so it is important that they review and possibly adjust your medication regime before you get pregnant. It is vital that you do not stop taking your immunosuppressants when you become pregnant without speaking to your transplant team. In general it is thought that you should wait at least 12 months following your transplant before attempting to conceive.
The good news is that many women have become pregnant and have had healthy children after transplant. Perhaps unsurprisingly, complications are more common in liver transplant recipients than in the general population. As a result, such pregnancies should be followed by a multidisciplinary team involving both obstetric and transplant specialists.
Please visit the support section of our website for information on Support groups in your area.