Kirsty’s Story – Living with chronic pancreatitis
Kirsty has lived with chronic pancreatitis for years, after struggling to receive a diagnosis.
Hindsight is a wonderful thing and, looking back, Kirsty’s health problems, which she had her whole life, were trying to tell a story. As a child she would vomit frequently and could not tolerate high fat foods. She also had a sore throat all the time. Things came to a head in 2003, when she was 23 years old. She was teaching violin to students at the time, which needed her to speak constantly, but worryingly she found that she kept losing her voice.
After a number of investigations doctors found a hiatus hernia in her oesophagus (gullet), which was causing severe acid reflux. The burning from the acid reflux had ulcerated the length of her oesophagus and was causing Kirsty to lose her voice. An operation was scheduled, which helped with the acid reflux but afterwards Kirsty knew something was not right. She felt continuous pain, two inches below her breast bone and to the right. The pain felt like it bore right through her and was often severe. Eating, especially fatty foods, would make the pain worse. She also felt nauseous and started to lose weight.
A long string of visits to her GP and her Consultant followed but they were unable to resolve the problem, despite carrying out numerous tests. Kirsty’s pain and nausea became so severe that she had to visit the hospital’s A&E department twice in the first 6 months after her operation. These visits were particularly upsetting because despite feeling extremely unwell A&E staff did not do any investigations and just sent her home with medication for acid reflux (which she no longer had) and a reproach that she was wasting their time.
The feeling that she was being passed around and fobbed off with unsatisfactory diagnosis and explanations continued. She was even referred to a psychologist and a psychiatrist, in case her pain was psychosomatic. Both discharged her straightaway, saying that they thought her pain was not psychosomatic and must have a physical cause.
Kirsty continued to feel extremely unwell for years and the pain associated with eating remained. She thinks one problem might be the way she behaves when she is in pain: instead of screaming or complaining loudly, Kirsty goes quiet and withdrawn. This is misunderstood by some health professionals as indicative of her pain not actually being that intense.
In 2010 Kirsty moved to Birmingham and started a teacher training course. Unfortunately her illness made her miss too many days from her course and so she had to drop out (teacher training courses only allow students to miss a few days of their course). This was really upsetting for Kirsty, but a small glimmer of light was starting to appear at the end of her tunnel.
Her new GP referred her to a new gastroenterology surgeon for another ultrasound scan and an endoscopy. He expected to find gallstones but this time when he didn’t find anything, rather than tell Kirsty it was all in her head, he sent her a for hepatobiliary scan (also known as cholescintigraphy or a HIDA scan). In this test a mildly radioactive substance (a radiotracer) is injected intravenously and taken up by the liver and then excreted into the biliary system (the gall bladder and bile ducts). The patient is then given a fatty drink, which activates the gallbladder and the movement of the radiotracer through the biliary system is imaged over time. The test showed that Kirsty’s gallbladder was practically not working. This discovery felt like progress even if it meant that she needed another operation, this time to remove her gallbladder.
Kirsty felt better afterwards and she managed to go back to her teacher training course but then life took another twist. Kirsty and her boyfriend broke up, she felt really low and she did what she had avoided doing all her life: she ate lots of chocolate, cheese and other fatty food. She got sick again but this time she was so fed up with her symptoms that she started to look online herself to try to understand what was wrong with her.
After some online research she decided she had chronic pancreatitis so she went back to her GP and asked him to humour her and send her for tests to determine this. She had an amylase test, which measures levels in the blood of the amylase enzyme, a molecule produced by the pancreas that is involved in digesting food. Normally amylase levels in the blood are low, unless the pancreas is damaged in which case levels in the blood can become elevated.
Kirsty’s amylase blood levels were outside the normal range, so she was sent for a magnetic resonance cholangiopancreatography (MRCP) scan, a type of scan that can provide detailed images of the pancreas. This test identified that Kirsty had what is known as ‘pancreas divisum’, a birth defect affecting the ducts that go from the pancreas to the gut. Pancreas divisum is rare – it is estimated to affect 5% of the population – and it is still controversial among doctors whether it can cause chronic pancreatitis. Indeed her previous doctors had identified Kirsty had this condition 5 years previously, when she had initially received a set of tests, but they dismissed it at the time as unlikely to be causing her symptoms.
This time the condition was taken more seriously and Kirsty was told to monitor her symptoms and go straight to A&E if she had another attack, so they could test her amylase blood levels immediately. So Kirsty went home and proceeded to eat a lot of fatty food to trigger an attack: she was prepared to do this to show that she did have pancreatitis. It worked and Kirsty ended up in A&E with what was for her just a moderate attack, but was diagnosed as acute pancreatitis. It turned out she had been having pancreatitis attacks at home for 6 years at that stage.
Problems with diagnosis
Since then Kirsty has found, from talking to other people with pancreatitis in online forums, that many patients have similar problems getting a diagnosis. This can be worse if the onset of the disease is slow, as happens in chronic pancreatitis. Damage to the pancreas can happen progressively and be hard to detect unless specific tests are used. Further investigations after her diagnosis showed that Kirsty’s common bile duct was full of microstones, which were causing her pancreatitis attacks. These microstones are the size of grains of sand and were only picked up during an Endoscopic Retrograde Cholangio-Pancreatography, an investigation that uses an endoscopy to examine the pancreatic and bile ducts. The microstones had previously been missed by ultrasound, Computer Tomography (CT), MRCP and X-ray scans.
Notwithstanding these difficulties with tests, people with chronic pancreatitis often feel the severity of their symptoms, including their pain, is not taken seriously enough by health professionals. This causes delays in their diagnosis, as well as mistakes: people suffering from chronic pancreatitis report receiving the wrong diagnosis, sometimes more than once, before they are diagnosed correctly.
Finding out that her experience was not unique encouraged Kirsty do something about it. In 2016 the National Institute for Health and Care Excellence (NICE), the government body responsible for producing clinical guidelines for health and social care, started to develop new guidelines on chronic pancreatitis. As part of this process NICE asked for contributions from patients and people affected by the disease. Kirsty decided to make the contribution as impactful as possible by doing a survey of people with chronic pancreatitis, pooling her findings and submitting those to NICE.
Her survey was successful (she got 144 respondents) and came up with interesting and important findings. She found that approximately 35% of patients waited one year or more to get a diagnosis, with 10% of patients waiting over 5 years. Two patients had waited over 20 years before they found out what was wrong with them.
Additionally, over 60% of the survey participants reported receiving the wrong diagnosis, most of them being diagnosed with Irritable Bowel Syndrome. These delays and wrong diagnoses highlight the problem of patients not having their symptoms or the intensity of their pain assessed appropriately.
The findings from the survey were so useful and relevant that researchers from the University of Liverpool asked her to publish her results in a scientific journal. She is in the process of doing this with a team from the University and expects to publish them in September 2018.
How to improve the experience for people with pancreatitis
Kirsty thinks this situation could improve substantially if frontline health professionals like GPs and A&E staff understood the symptoms of chronic pancreatitis better. Part of the problem is that it is a relatively rare condition, so medical professionals do not come across it frequently. Many of the survey participants felt that their GP, and the A&E staff they came in contact with, did not have adequate knowledge to treat them effectively. Kirsty would like to support health professionals in gaining a better understanding of the symptoms of pancreatitis, both chronic and acute.
Kirsty also identified potential improvements in how patients are treated. For example, patients with pancreatitis should be seen in a specialist pancreas centre, so they can get appropriate support. Patients should also be referred to a pain management centre and be seen by a gastroenterology dietitian.
Pancreatitis can be extremely painful but pain is subjective and can be difficult for patients to describe its intensity and impact and for health professionals to understand it. Patients are often given a pain measurement scale with a numerical score from 1 (no hurt) – 10 (hurts worst), and are asked to place their pain within that scale. However the score will mean different things to different people depending on their previous experience of pain. Kirsty feels a better method for communication pain needs to be developed.
Mental health support is also important. Pancreatitis, both acute and chronic, can have a strongly negative impact on people’s lives. Some people are in constant pain, which is extremely debilitating, but the disease can also affect people’s diets, how much they can socialise, how active they can be, and it might even stop them from working or from having children.
Patients also need to be referred for specialist dietetic support, as many patients have problems with food. Pain and nausea can increase markedly after eating and some people can also have problems digesting food. The pancreas normally produces enzymes that break down food but when damaged by pancreatitis it can sometimes produce a smaller quantity of these enzymes. This is known as Pancreatic Exocrine Insufficiency and affects the digestion and absorption of food, sometimes leading to nutritional deficiencies or weight loss. It can also cause a type of diarrhoea, known as steatorrhea, which is caused by the presence of unabsorbed fat in the stools. The excess fat makes the stools pale coloured, oily looking and foul smelling. They also float and are difficult to flush away. Steatorrhea can be difficult to manage because it can happen quickly, leading to accidents.
Patients with pancreatitis can take capsules containing the pancreatic enzymes but a high dose is sometimes needed for the enzymes to work, with some patients needing to take over 50 capsules a day. Additionally, many patients are not given appropriate information on how often to take their capsules, or how to adjust the dose around their diet. Dietary advice, when given, can sometimes be inconsistent or unhelpful. Many patients need to avoid high fat foods, or might even need to be on a low fat diet, to avoid steatorrhea and sometimes to minimise pain. However the most recent advice recommends patients follow a normal diet, to avoid weight loss or to minimise deficiencies of fat soluble vitamins that can be seen on low fat diets. This advice stems from a nutritional point of view rather than a pain management point of view. Kirsty thinks it is important that health professionals understand many patients might not be able to tolerate a normal diet, which is why it is important that patients have access to specialised dietetic input.
Advice for the newly diagnosed
Kirsty’s advice for someone who thinks they might have chronic pancreatitis or is in the process of being diagnosed is to be persistent. Finding support and advice from one of the online and Facebook pancreatitis support groups might help. Some of the bigger ones are Chronic Pancreatitis UK, Pancreatic Tree, and the UK & Ireland Pancreatic and Biliary Disease Support Group. Every year, in May, the University of Liverpool organises a Pancreatic Disease Forum for all those affected.
Kirsty also recommends that patients ask to be referred to a specialist centre and also request appropriate additional support, whether as pain management, dietetic input and/or mental health support.
How has having pancreatitis changed Kirsty’s life?
Looking back, Kirsty notes that having pancreatitis and especially having it diagnosed so late completely changed her life. She had to give up teaching violin and music in schools and she knows she would have been able to play more often when she was younger if she had not been too unwell to accept performances. Having to turn down appointments meant that she would not always get asked to play again. However Kirsty appreciates that having chronic pancreatitis has allowed her to meet many amazing people along the way, who inspired her to do her research. Inspired, by how well received her survey was, she now wants to do a PhD in education focusing on better pain and/or symptoms assessment.
Guts UK is delighted to give Kirsty a voice to raise awareness of pancreatitis and we hope her dreams and ambitions are realised.