Stephanie Atts was diagnosed with pancreatitis when she was 24. She has given up drinking but the condition still causes her pain.

“I kept going into hospital because I was suffering from severe stomach pain. But the doctors couldn’t find anything wrong with me.

“They took some blood tests and called me at 11.30 one night. They said they had my results and it was something quite serious. When they told me it was pancreatitis, I was really shocked and upset.

“Pancreatitis is incredibly painful. The stomach pain just comes on all of a sudden. There’s no run-up to it, it just hits you. It starts in my guts and moves round to my back, then I throw up. It’s hard to describe how bad the pain is. It’s worse than being in labour, which is saying something. And there’s no position where you can get comfortable. It’s so bad you can barely move.

“They did some more tests, including an endoscopy, to find out the extent of the damage and found that a quarter of my pancreas was terminally damaged. I was told to stop drinking immediately, which I did. I had been drinking heavily for about eight months, which is what caused the pancreatitis.

“Apart from giving up drinking, my doctors told me to stick to a low-fat diet. But even though they’re less painful now I’m not drinking, the attacks keep coming. Every time I get an attack I have to go into hospital. I’m there for a few days on morphine, a drip and antibiotics until the pain goes away.

“I have kids, so the attacks really affect them and my family in general, as I keep having to go into hospital. One year I was in eight times. It’s really disruptive and difficult.

“I would tell anyone who thinks they might have pancreatitis to stop drinking. I know some people who have it and still have a few drinks here and there, but you can’t do that. It’s just not worth it. There’s not much else you can do, apart from giving up drink and sticking to a low-fat diet. But I would seriously consider how much you’re drinking now, as no amount of fun is worth the pain of pancreatitis.”

Chronic pancreatitis is often related to long-term alcohol consumption, although no cause is identified in up to 2 in every 10 cases.

Some of the known causes of chronic pancreatitis are outlined below.

Alcohol consumption

At least 7 in every 10 cases of chronic pancreatitis are associated with alcohol consumption, particularly long-term alcohol misuse.

This is because heavy drinking over many years can cause repeated episodes of acute pancreatitis. Acute pancreatitis is usually a short-term condition, but it can recur if you continue to drink alcohol. Over time, repeated inflammation will cause permanent damage to the pancreas, resulting in chronic pancreatitis.

Anyone who regularly consumes alcohol has an increased risk of chronic pancreatitis, although only a minority develop the condition.

Problems with the immune system

Rare cases of chronic pancreatitis are the result of a problem with the immune system, which causes it to attack the pancreas. This is known as autoimmune pancreatitis and it’s not clear exactly why it happens.

Many people with autoimmune pancreatitis also have other conditions caused by the immune system attacking healthy tissue. These include ulcerative colitis or Crohn’s disease, both of which cause inflammation inside the digestive system.

Genetics

Some cases of chronic pancreatitis are inherited. This is thought to be caused by mutations (alterations) in a number of genes, including genes called PRSS1 and SPINK-1. These mutations disrupt the normal working of the pancreas.

Genetic mutations may also have a role in the effect of alcohol on your pancreas. Evidence suggests there are certain genetic mutations that make some people’s pancreas much more vulnerable to the harmful effects of alcohol.

Other causes

Several other rare causes of chronic pancreatitis have also been identified, including:

• injury to the pancreas
• blocked or narrowed openings (ducts) of the pancreas
• smoking
• radiotherapy to the abdomen (tummy)

Damage to your pancreas due to chronic pancreatitis means that further problems are relatively common.

Diabetes

Around half of people with chronic pancreatitis will develop diabetes, usually many years after receiving their diagnosis (it is not unusual for 20 years to pass before diabetes occurs).

Diabetes develops when your pancreas is no longer able to produce insulin. Insulin is a chemical the body uses to break glucose down into energy. The main symptoms of diabetes are:

• feeling very thirsty
• going to the toilet a lot, particularly at night
• extreme tiredness
• weight loss and muscle wasting (loss of muscle bulk)

If you develop diabetes due to chronic pancreatitis, you will probably need to have regular insulin injections to compensate for the lack of natural insulin in your body.

Psychological effects of chronic pancreatitis

Any chronic health condition, particularly one that causes recurring or constant pain, can have an adverse effect on your emotional and psychological health.

One study, which looked at people living with chronic pancreatitis, found that one in seven people had some sort of psychological or emotional problem, such as stress, anxiety or depression.

Contact your GP if you are experiencing psychological and emotional difficulties. Effective treatments are available that can help to improve the symptoms of stress, anxiety and depression.

Joining a support group for people with chronic pancreatitis, such as the Pancreatitis Supporters’ Network, may also help. Talking to other people with the same condition can often help to reduce feelings of isolation and stress.

Pseudocysts

Another common complication of chronic pancreatitis is pseudocysts, sacs of fluid that can develop on the surface of your pancreas. They are thought to affect around one in four people with chronic pancreatitis.

In many cases, pseudocysts do not cause any symptoms and are only detected during a computerised tomography (CT) scan. However, in some people, pseudocysts can cause the following symptoms:

• bloating
• indigestion
• dull abdominal pain

If the pseudocysts are small and not causing any symptoms, there may be no need for treatment because they usually disappear on their own.

Treatment will usually be recommended if you are experiencing symptoms or the pseudocysts are larger than 6cm (2.3 inches) in diameter. Larger pseudocysts are at risk of bursting open, which could cause internal bleeding or trigger an infection.

Pseudocysts can be treated by draining the fluid out of the cyst. This can be done by inserting a needle through your skin and into the cyst. Alternatively, an endoscopy may be used. This is where a thin, flexible tube called an endoscope is passed down your throat and tiny tools are used to drain away the fluid.

Sometimes, pseudocysts are treated by removing part of the pancreas using laparoscopic or ‘keyhole’ surgery. This is known as a laparoscopic distal pancreatectomy. See guidelines from the National Institute for Health and Care Excellence on laparoscopic distal pancreatectomy.

Pancreatic cancer

Chronic pancreatitis increases your risk of developing pancreatic cancer. However, the increased risk is relatively small. For example, it is estimated that for every 100 people with chronic pancreatitis, only one or two will develop pancreatic cancer.

The most common initial symptoms of pancreatic cancer are much the same as chronic pancreatitis. They include jaundice, abdominal pain and weight loss.

Chronic pancreatitis can usually only be diagnosed by carrying out scans of the pancreas.

Your GP will ask you about your symptoms and may carry out a simple physical examination, but they will refer you for further tests if they suspect chronic pancreatitis.

These tests are usually carried out in your local hospital and may include:

• an ultrasound scan, where sound waves are used to build up a picture of the inside of your pancreas
• a computerised tomography (CT) scan, where a series of X-rays are taken to build up a more detailed, three-dimensional image of the pancreas
• an endoscopic ultrasonography (see below)
• a magnetic resonance cholangiopancreatography or MRCP (see below)

Endoscopic ultrasonography

During an endoscopic ultrasonography, a thin flexible telescope (endoscope) is passed through your mouth and towards your stomach. An ultrasound probe attached to the tip of the telescope is able to get close to the pancreas and take very accurate pictures of it.

You will usually be given a sedative to help you relax during the procedure.

MRCP

An MRCP involves injecting you with a substance known as a contrast agent that makes your pancreas and surrounding organs, such as the gallbladder and liver, show up very clearly on a magnetic resonance imaging (MRI) scanner.

An MRI scanner is a type of imaging system that uses magnetic fields and radio waves to build up a detailed image of the inside of your body.

An MRCP is a useful way of checking whether gallstones may be contributing to your symptoms.

Biopsy

Sometimes, the symptoms of chronic pancreatitis can be very similar to pancreatic cancer. Therefore, if you have symptoms such as jaundice (yellowing of the skin and whites of the eyes) and weight loss, a biopsy may be recommended to rule out a diagnosis of pancreatic cancer.

A biopsy involves taking a small sample of cells from the pancreas and sending it to a laboratory so it can be checked under a microscope for the presence of cancerous cells.

A biopsy can be taken using a long, thin needle that is passed through your abdomen. The needle can be guided towards the tumour using an ultrasound scan or computerised tomography (CT) scan.

Alternatively, a biopsy can be taken during an endoscopic ultrasonography (see above).

Chronic pancreatitis is a condition where the pancreas becomes permanently damaged due to inflammation.

It is different to acute pancreatitis, where the inflammation is only short-term.

The most common symptom of chronic pancreatitis is repeated episodes of abdominal (tummy) pain, which can be severe.

Other symptoms tend to develop as the damage to the pancreas progresses, such as producing greasy, foul-smelling stools.

Read more about the symptoms of chronic pancreatitis and diagnosing chronic pancreatitis.

When to seek medical advice

Always visit your GP if you are experiencing severe pain – it is a warning sign that something is wrong.

Why it happens

Long-term alcohol misuse is responsible for around 7 out of every 10 cases of chronic pancreatitis. This is because heavy drinking over a number of years can repeatedly damage the pancreas.

Less common causes include:

• smoking, which can also increase the risk of alcohol-related chronic pancreatitis
• a problem with the immune system that causes it to attack the pancreas
• an inherited genetic mutation that disrupts the functions of the pancreas

In about 2 in every 10 cases, no specific cause is identified.

Read more about the causes of chronic pancreatitis.

Who is affected

Chronic pancreatitis can affect people of any age, but is most common in middle-aged men aged between 45 and 54.

Between 2012 and 2013, over 35,000 people visited hospitals in England with the condition.

How it is treated

In most cases of chronic pancreatitis, there is no specific treatment to reduce the inflammation and repair the damage to the pancreas.

Therefore, treatment mainly focuses on lifestyle changes (see below) and medication to relieve the pain. Surgery is sometimes needed to treat severe chronic pain that does not respond to painkillers.

However, the pain can be difficult to treat and can seriously affect your quality of life.

People who do not smoke cigarettes and who avoid drinking alcohol tend to experience less pain and live longer than those who continue to drink and smoke after receiving a diagnosis.

Read more about treating chronic pancreatitis.

Complications

Diabetes is a common complication of chronic pancreatitis and affects about half of people with the condition. It occurs when the pancreas is damaged and is unable to produce insulin.

People with chronic pancreatitis also have an increased risk of developing pancreatic cancer.

Read more about the possible complications of chronic pancreatitis.

Repeated episodes of abdominal (tummy) pain are the most common symptom of chronic pancreatitis.

The pain usually develops in the middle or on the left side of your abdomen and can sometimes travel along your back.

Most people have described the pain as feeling like a dull but severe ache. The episodes of pain can last for several hours or sometimes days. The pain can sometimes occur after eating a meal, but often episodes of pain seem to have no trigger.

You may also experience symptoms of nausea and vomiting during the painful episodes. As chronic pancreatitis progresses, the painful episodes may become more frequent and severe.

Some people may eventually experience a constant mild to moderate pain in their abdomen in between episodes of severe pain. This pattern of symptoms is most common in people who continue to drink alcohol after being diagnosed with chronic pancreatitis.

Some people who stop drinking alcohol and stop smoking may experience a reduction in the severity of their pain.

Advanced chronic pancreatitis

Additional symptoms can occur when the pancreas loses its ability to produce digestive juices, which help break down food in the digestive system. The pancreas usually only loses these functions many years after the original symptoms started.

The absence of digestive juices makes it difficult for your digestive system to break down fats and certain proteins. This can cause your stools to become particularly smelly and greasy, and make them difficult to flush down the toilet.

You may also experience:

• weight loss
• loss of appetite
• jaundice (yellowing of the skin and eyes)
• symptoms of diabetes, such as feeling very thirsty, urinating frequently and feeling very tired

When to seek medical advice

Always visit your GP if you are experiencing severe pain, as this is a warning sign something is wrong.

You should also visit your GP if you develop symptoms of jaundice. Jaundice can have a range of causes other than pancreatitis, but it is usually a sign that there is something wrong with your digestive system.

You should also visit your GP if you develop persistent vomiting.

There is no cure for chronic pancreatitis, but treatment can help control the condition and reduce any symptoms.

Lifestyle changes

If you are diagnosed with chronic pancreatitis, some lifestyle changes will be recommended. These are described below.

Avoiding alcohol

The most important thing you can do is stop drinking alcohol, even if this is not the cause of your condition. This will help prevent further damage to your pancreas and may help to reduce the pain.

If you continue to drink alcohol, it is likely you will experience debilitating pain and you will be more likely to die from a complication of chronic pancreatitis.

Some people with chronic pancreatitis caused by alcohol consumption have a dependency on alcohol and require additional help and support to stop drinking. If this applies to you, talk to your GP about getting help to stop drinking.

Treatment options for alcohol dependence include:

• one-to-one counselling
• self-help groups, such as Alcoholics Anonymous
• a medication called acamprosate that can help reduce cravings for alcohol

Read more about treating alcohol misuse.

Stopping smoking

If you smoke, you should stop. Smoking can speed up the progress of chronic pancreatitis, making it more likely that your pancreas will lose its function.

It’s recommended that you use an anti-smoking treatment, such as nicotine replacement therapy (NRT) or bupropion (a medication used to reduce cravings for cigarettes). People who use these types of treatments have a much greater success rate in permanently stopping smoking than those who try to quit using willpower alone.

If you want to give up smoking, it is a good idea to start by visiting your GP. They will be able to provide you with help and advice about quitting and can refer you to an NHS Stop Smoking support service.

These services offer the best support for people who want to give up smoking. Studies show that you are four times more likely to give up smoking if you do it through the NHS. For more information, you can call the NHS Stop Smoking helpline on 0800 022 4332 (England only).

Read more about stopping smoking.

Dietary changes

As chronic pancreatitis can affect your ability to digest certain foods, you may need to change your diet. In particular, a low-fat diet is recommended.

Your GP may be able to provide you with appropriate dietary advice, or may refer you to a dietitian, who will draw up a suitable dietary plan.

Enzyme supplements

You may be given pancreatic enzyme supplements, medication that contains an artificial version of the enzymes (chemicals) produced by your pancreas. These supplements may help improve the effectiveness of your digestive system.

Side effects of pancreatic enzyme supplements can include diarrhoea, constipation, nausea, vomiting, and stomach pains.

If you do experience side effects that are particularly troublesome, talk to your GP, as your dosage may need to be adjusted.

Steroid medication

If you have chronic pancreatitis caused by problems with your immune system, treatment is relatively straightforward. The inflammation affecting the pancreas can usually be relieved using steroid medication (corticosteroids).

However, taking corticosteroids for a long time can cause troublesome side effects, such as osteoporosis (weakening of the bones) and weight gain.

Pain relief

Pain relief is an important part of the treatment of chronic pancreatitis. At first, mild painkillers will be used, but more powerful ones will be needed if these do not work.

Mild painkillers

In most cases, the first painkiller used is paracetamol or a non-steroidal anti-inflammatory drug (NSAID) such as ibuprofen.

Taking NSAIDs on a long-term basis can increase your risk of developing stomach ulcers, so you may be prescribed an additional medication called a proton pump inhibitor (PPI) to protect against this.

Stronger painkillers

If NSAIDs or paracetamol prove to be ineffective in controlling your pain, it is likely you will need an opiate-based painkiller, such as codeine or tramadol. Side effects of these types of medication can include constipation, nausea, vomiting and drowsiness.

The side effect of constipation can be particularly troublesome if you need to take an opiate-based painkiller on a long-term basis. In such circumstances, you may be prescribed a laxative to help relieve your constipation. See treating constipation for more information.

If you feel drowsy after taking an opiate-based painkiller, you should avoid driving and using heavy tools or machines.

Severe pain

If you experience an attack of very severe pain, you may need a stronger opiate-based painkiller, such as morphine or pethidine. These have similar side effects to the opiate-based painkillers mentioned above.

Long-term use of these stronger opiate-based painkillers is not usually recommended because there is a high risk of addiction. Therefore, if you have persistent severe pain, surgery will usually be recommended.

In some cases, an additional medication called amitriptyline may be recommended. Amitriptyline was originally designed to treat depression, but it can help to relieve pain in some people.

If medication is ineffective, severe pain can sometimes be temporarily relieved for a few weeks or months using a procedure called a nerve block. This is an injection that blocks the pain signals from the pancreas.

Surgery

Surgery can be used to treat severe pain in people with chronic pancreatitis. Depending on the exact cause of your pain, there are a variety of surgical techniques that may be used. Some of these are outlined below.

Endoscopic surgery

Patients with stones in the opening of their pancreas (the pancreatic duct) may benefit from endoscopic surgery and a treatment called lithotripsy.

Lithotripsy involves using shock waves to break the stone into smaller pieces. An endoscope (a thin, long, flexible tube with a light source and a video camera at one end) is then used to pass surgical instruments into the pancreatic duct so the pieces can be removed.

This treatment may improve pain to some extent, but the benefit may not be permanent.

Pancreas resection

In cases where specific parts of the pancreas are inflamed and causing severe pain, these parts can be surgically removed. This type of surgery is called a pancreas resection.

Pancreas resection can also be used if endoscopic treatment is ineffective.

The technique used for pancreas resection depends on exactly which parts need to be removed. For example, some techniques involve removing the gallbladder along with parts of the pancreas.

The different surgical techniques tend to have the same levels of effectiveness in terms of reducing pain and preserving the function of the pancreas, although some of the more complex techniques have an increased risk of complications, such as infection and internal bleeding. Simpler procedures have a lower risk of complications and usually have faster recovery times.

Discuss the pros and cons of the appropriate pancreas resection techniques with your surgical team before making a decision.

Total pancreatectomy

In the most serious cases of chronic pancreatitis, where the pancreas has been extensively damaged, it may be necessary to remove the entire pancreas. This is known as a total pancreatectomy.

A total pancreatectomy can be very effective in treating pain. However, you will no longer be able to produce the insulin that is needed by your body. To overcome this problem, a relatively new technique called autologous pancreatic islet cell transplantation (APICT) is sometimes used.

During APICT, the islet cells responsible for producing insulin are removed from your pancreas, before your pancreas is surgically removed.

The islet cells are mixed with a special solution, which is injected into your liver. If the APICT procedure is successful, the islet cells remain in your liver and begin to produce insulin.

In the short-term, APICT appears to be effective, but you may need additional insulin treatment in the long-term. See guidelines from the National Institute for Health and Care Excellence about autologous pancreatic islet cell transplantation for more information.