Tips and Suggestions

Chronic pancreatitis is a complex and challenging disease and patients need to be treated by medical professionals that have experience of this condition, including a hospital Consultant with a specialist interest in pancreatic diseases. Your GP or a gastroenterologist at your local hospital should be able to refer you to a hospital with a pancreas specialist. This may be a hospital outside of your local area.

There are excellent online Facebook groups for people with pancreatitis and their friends and family. There are physical groups/forums ran by patients in both Newcastle and Liverpool. Contact Guts UK for more information.

Much of the information on this webpage has been suggested by patients with pancreatitis, based on their personal experience. We like to call them ‘experts by experience’.

In September 2018 the National Institute for Health and Care Excellence (NICE) released a new guideline on the management of acute and chronic pancreatitis in children, young people and adults. The guideline aims to improve quality of life by ensuring that people have the right treatment and follow-up, and get timely information and support after diagnosis.

Tips and suggestions for managing food and nutrition

Eating and maintaining nutritional status can be challenging for people with chronic pancreatitis. The causes for this are complex and can include reduced overall food intake, avoidance of specific foods and nutrients (for example fat), poor or no absorption of nutrients in the gut (malabsorption), pain, nausea, vomiting, bloating, negative feelings towards certain foods and eating in general, diabetes, stress, social pressure and financial constraints.

The NICE guideline for pancreatitis notes that all people with chronic pancreatitis are at high risk of malabsorption, malnutrition and a worsening in their quality of life. The guideline recommends that when applicable people with chronic pancreatitis, and their family members or carers (as appropriate), are given nutrition advice, including advice on how to take Pancreatic Enzyme Replacement Therapy (PERT) for Pancreatic Exocrine Insufficiency (PEI).

The NICE guideline also suggests considering an assessment by a specialist dietitian for anyone diagnosed with chronic pancreatitis or following the care plan (protocol) agreed with the specialist pancreatic centre to identify when advice from a specialist dietitian is needed, including advice on food, supplements and long-term pancreatic enzyme replacement therapy, and when to start these interventions. Ask your pancreas specialist to refer you to a dietitian with experience of treating pancreatitis and pancreatic pain. Remember that chronic pancreatitis is quite a rare condition, so a community dietitian may not have much experience of treating this condition.

Managing fat in your diet

Many foods can cause problems for people with pancreatitis but fatty foods are the most likely to trigger symptoms. Because of this some patients try to control the amount of fat in the diet. Health professionals recommend that low fat diets are avoided in chronic pancreatitis, and that PERT and/or further tests are considered. Controlloing the levels of fat in the diet is difficult because the patient needs to balance four main factors. These are:

1. Eating fat stimulates the pancreas, so therefore eating a low fat diet might help with the management of symptoms, particularly pain.
2. Fat has calories, so eating a low fat diet makes it harder to maintain calories and can make it difficult to maintain your weight, particularly if you are also struggling to eat enough.
3. Many chronic pancreatitis patients also develop malabsorption. This is where the patient’s gut isn’t managing to absorb all of the nutrients eaten. A number of vitamins are fat soluble (they can only be absorbed when the meal contains some fat). If you eat a low fat diet you run the risk of malnutrition. Malnutrition means that you are lacking in certain nutrients and this can be a problem even if a patient is a ‘healthy’ weight.
4. Patients may develop Pancreatic Exocrine Insufficiency (PEI). This is where the pancreas no longer makes enough enzymes to adequately digest food. It is treated by taking pancreatic enzyme replacement therapy (e.g. Creon). Undigested fat in the stool causes steatorrhoea. If you are getting steatorrhoea, it means that you are not taking enough pancreatic enzyme replacement therapy. Discuss this with your doctor or dietitian.

The logical advice is to eat the highest amount of fat that you can manage without aggravating symptoms. However, that is not simple to work out because every patient is different. The ‘danger food’ for one person could be a ‘safe food’ for another. Another problem is that patients might feel that a food can be fine one day and cause problems the next. The only way to figure it out is by trial and error and keeping records of symptoms after eating. Keep a food and symptom diary. You can do this using an app or a notebook. Ask your dietitian for help with this.

Many patients find fat counting works really well because it means that they can then eat small amounts of foods they really like (e.g. chocolate) without making their symptoms worse. It may take some time to work out how much fat you can manage in a day without making yourself more ill. Remember you need to be sensible about distributing the fat through the whole day. If you have 30g of fat a day and you eat all 30g of fat in one meal, you could end up being really ill.

How do you know if your diet plan is working?

• Firstly, and most importantly, your symptoms will be more controlled.
• You are a healthy weight and you aren’t losing weight.
• You are absorbing nutrients. The only way to test this to ask your GP to run blood tests to check levels of nutrients, particularly fat soluble nutrients.
• You don’t have steatorrhoea.

 ‘Safe’ foods and foods to watch

It is important that you adjust your diet to manage symptoms and malnutrition. People with chronic pancreatitis often develop personal approaches to manage their day to day eating and food choices. They also develop coping strategies for when they have a flare up, which include identifying ‘safe’ foods that they can eat when they are recovering from being ill. However sometimes the body decides it doesn’t want a particular food, even a ‘safe’ food, and it will react negatively.

Fasting during a flare up and afterwards might help short-term but is damaging long-term. Dietitians and medical professionals advocate getting back to a normal and balanced diet as soon as possible, avoiding food restrictions. However, your body might not feel like food for a few days so take it slowly and trust what your body tells you it wants (within reason).

Often it helps to eat four or five small meals regularly spaced throughout the day. It means the pancreas does not need to work as hard because you spread the food load throughout the day. Consider not eating late so your stomach is less full when you go to bed. Mushy type foods tend to be easier to digest whereas some red meats can be more problematic. Lean poultry or fish might be easier to digest. A good saying to consider is ‘if it flies or swims it’s okay to eat!’

Some people find that in the first few days after a pancreatic attack they prefer to stick to soups. Start off with thin soups and slowly increase the consistency over a few days until you can manage small lumps. Adding a small piece of bread or crackers makes the soup more filling. It is a good idea to be cautious with spices until you find out what you can manage.

If you need to modify your diet start slowly so it all seems less daunting. Swap high fat foods for safer alternatives, this way it doesn’t make you feel like you are depriving yourself. With a bit of trial and error you will soon know what works best for your body. If you enjoy cooking, doing it from scratch with fresh ingredients helps as you know what has gone into your food and can control fats, oils and spices.

The list below contains suggestions from people with pancreatitis for ‘safe’ foods, as well as foods that they limit or avoid completely. Please note these are their personal choices and might not be relevant to you.

Helping friends and family to understand the challenges around eating and drinking

Friends and family member sometimes struggle to understand and accept that people with pancreatitis might need to restrict their diet in some ways. They think their friend or relative is being difficult, picky or watching their weight. They might not understand that it is not that their friend or relative doesn’t want to eat certain foods but rather it’s just that the pain simply isn’t worth it.

Pancreatitis patients have a huge battle with food because eating can badly aggravate symptoms. If someone has coeliac disease they will feel a lot better by completely avoiding foods containing gluten. Unfortunately food restrictions can be harder to manage for pancreatitis patients. Whilst just eating can cause pain, food containing fat can have truly awful effects. Also, sometimes a food can be fine one day and the next day the exact same food could make the patient feel terrible. Think about what it is like when you are recovering from a nasty stomach bug. The idea of even putting food in your mouth can be revolting. When you feel like that, there are probably only a few foods that you can cope with eating.

Many chronic pancreatitis patients need to fat count (calculate the amount of fat in a meal). This means what they can eat at one meal will depend on what they ate earlier (e.g. if they have something with more fat for breakfast, they will eat less fat the rest of the day). Learn how to fat count and help your friend do it. It can be quite a lot of work to do this because they need to calculate the amount of fat in everything they eat.

Often people with pancreatitis don’t feel like eating so cooking small meals for them is a huge help. Don’t be tempted to overfill their plates – a child-sized portion is fine, they will ask for more if they need it. And please don’t be offended or upset if they cannot eat it or finish it. If possible freeze any leftovers so they can be eaten another day. Also don’t be offended if your friend or family member brings their own food. Sometimes it is easier and safer to eat something where you know exactly what is in it. Many patients find it much easier to eat six small meals rather than three large meals. Some patients don’t eat meals but graze instead. Try to support the eating pattern and schedule that works best for your friend or family member. And remember that people with chronic pancreatitis cannot drink alcohol, so avoid cooking with alcohol or provide alternatives for your friend or family member.

Many patients and their friends and families get upset about not being able to eat out at restaurants. There are a few ways to make this “safe”:

1. Phone the restaurant in advance and discuss what you can and can’t eat. With advance warning, most restaurants are happy to make something special for you.
2. Write down the details about what you can and can’t eat and hand it to the waiting staff to give to the chef (or offer to email it to them when you first call them).
3. Check exactly what it is in the food before you eat it.

Tips and suggestions for managing pain

Pain in chronic pancreatitis is common, varied in nature, of complex origin, can be difficult to control and often reduces quality of life. Over time those affected might develop neuropathic pain, which is when the nerves themselves become damaged or affected. The pain is usually managed with opioid painkillers, which can worsen the pain with prolonged use. The Faculty of Pain Medicine has information on the appropriate use of opioids on their website. Giving up smoking and alcohol are important in pain management, as they worsen the condition. The NHS website has a section on how to reduce pain  and how to get help.

The NICE guideline on pancreatitis recommends that health professionals give people with pancreatitis, and their family members or carers (as appropriate), written and verbal information on how their pain will be treated, how to access their local pain team, and types of pain relief. There are additional guidelines from NICE that recommend how to treat neuropathic pain in adults.

If you have any issues with pain at all, ask your pancreas specialist to refer you to a pain clinic with experience of treating pancreatic pain. You may need to be referred to somewhere outside of your local area. At a pain clinic you may be offered different forms of treatment, from medication to pain blocks to TENS (Transcutaneous Electrical Nerve Stimulation) machines to pain courses.  Working with your consultant, pain clinic and GP, you need to devise a plan for management of daily pain, of pain in flare ups that can be managed at home, and a plan for pain relief for acute attacks or severe flare ups for use in hospital.

People with chronic pancreatitis develop their own approaches to alleviating their pain. Below are suggestions from people with pancreatitis. Please note that these are personal suggestions and might not work for everyone.

• TENS (Transcutaneous electrical nerve stimulation) machines can be useful for some patients and worth trying out. They are small battery-operated machines with electrodes that stick onto the skin and deliver electrical pulses that can reduce the signals going to the spinal cord and brain. These can help relieve pain and relax muscles. Most pain clinics have TENS machines that they will lend you for free. Alternatively you can buy them for under £30. It is worth experimenting with them to see if they help.
• Many patients find that using heat helps to relieve pain and makes them more comfortable. Experiment with different ways of delivering heat to see what works best for you. These include heat pads, hot water bottles (it is possible to get long thin hot water bottles as well as the traditional shapes), hot baths, wheat bags (heat them in the microwave) or sticky heat patches. The heat can be soothing and help with back pain caused by pancreatitis.
• Lying flat makes pancreatic pain worse. Sleep propped up on pillows. You may want to experiment with V-shaped pillows or bed wedges.
• Get on top of the pain when it starts with the medication prescribed by your pain team/Consultant/GP.
• If you are taking opiate painkillers, take care to make sure that you don’t end up becoming constipated. Speak to your GP about what you can do or take to relieve constipation.
• For some patients it helps their pain to start on a clear liquid diet after a flare up. Try to stick with liquids for 24 hours and then gradually increase the lumpiness of food. Move onto slightly thicker soups, then rice and well cooked soft vegetables. Only move onto chicken and fish when the pain has subsided. You will soon get into a routine that works for you. Also remember our bodies are all different and it’s about learning what works best for your body. So these ideas are just a starting point for you to experiment with.
• Speak to a pain management team with experience of treating pancreatic pain and work with them to find what’s best for you. Don’t be scared to try something that may seem strange, it could help. Ask your specialist or general practitioner for a referral to the chronic pain team. They have a variety of services at their disposal from pain relief to counselling and exercise classes.
• Get an understanding Consultant. You might need to go through a few different ones before you find the Consultant that best meets your needs. Sometimes a patient might be initially referred to a general surgeon before being referred to a gastroenterologist and then finally, to a pancreas specialist. You can try asking to be referred to a pancreas specialist directly. Don’t be worried if you notice you’ve been referred to a liver specialist. There isn’t necessarily a problem with your liver it’s just they cover liver and pancreas together.
• Ask to be referred to a pain management course. However please note that for these courses to work it is essential to embark on them with an open mind. Pain management courses are sometimes in a group setting or sometimes one on one. These can be residential or in the form of outpatient clinics. The purpose of the course is to help the patient develop strategies to better manage pain, including CBT (cognitive behavioural therapy), relaxation and exercises.
• Go to the gym and exercise; many people fear it will make you worse but it can help.
• Find a distraction or a hobby that works for you (computer games, radio programmes, TV series, pampering, colouring books) and that can help pass the time and be soothing to your soul.
• Pain makes people tense up and tensing up makes pain worse. You need to find ways to relax even when you are in a lot of pain. You will need to experiment to find which things work for you. Keep warm (feeling cold makes people tense up), learn some breathing exercises, use meditation apps on your mobile or mobile phone games designed to be relaxing (e.g. Zen Koi).
• Sometimes nothing at all will help in the middle of an attack and you will feel you would rather be unconscious or asleep. Many patients find lying in the foetal position (curled up into a ball) on their right side can help pain. The theory is that this helps the pancreas to drain.
• Alleviating other symptoms, like nausea, might help with stress and reduce the pain:
  • Drinking peppermint tea as many people say it helps with nausea and soothes spasms in the gut. However, beware as it seems some people say it can make acid reflux worse.
  • Ginger is a traditional remedy for nausea, and ginger biscuits can be nice to nibble on, but be careful as they can be high in fat.
  • Buy a simple body spray or perfume and use it if you have been sick to help get rid of the smell.
  • Buy chewing gum in case you have been sick.
  • Carry flavoured water that is sugar free: it is nice and also hydrates you.

Tips and suggestions for supporting your mental health

Being constantly or often in pain, having to wait a long time (sometime years) to get an accurate diagnosis, having their pain and/or symptoms disbelieved by others, feeling or being judged about the cause of their pancreatitis by health professionals, having to endure painful and complex treatment procedures that might not work in the long term, lacking or losing the support of friends and family, losing their job or not being able to do the activities or hobbies they love doing, being in constant fear of a flare up, feeling like they are not good enough parents or relatives, not being able to have children, feeling that they are missing out in life: these are some of the challenges people with pancreatitis have to endure and which can have a huge impact on their mental health.

The NICE guideline recommends that people with pancreatitis, and their family members or carers (as appropriate), are given written and verbal information on psychological care if needed, where available. NICE has additional guidelines for the management of depression in adults with a chronic physical health problem.

Getting support is essential to maintain mental health. That support might be more effective from those who understand pancreatitis and its impact. Facebook support groups for people affected by pancreatitis can be extremely useful not just to obtain information and advice, but to feel understood and accepted. Helping relatives, friends and even health professionals understand the impact of pancreatitis on mental health, and on general quality of life, can be difficult but worthwhile in the longer term.

People with chronic pancreatitis develop their own approaches to support their mental health.  Below are suggestions from people with pancreatitis. Please note that these are personal suggestions and might not work for everyone.

• When you are diagnosed make sure you obtain correct and appropriate information about pancreatitis and its management. Ask your GP or Consultant for suitable information.
• Keep track of your pancreatitis; know what medication you may be on, telephone number for your Consultant, dietitian and so on. You will feel more in control when you know what’s going on. Make a folder to keep all your notes, hospital letters and results in. These come in handy if you need to visit a different hospital or Consultant.
• It’s ok to cry and don’t hide it. You are going through a very rough period in your life so let your emotions out and don’t feel weak because of it.
• Speak to your doctor or Consultant and let them know you are struggling. They may be able to refer you to a mental health worker.
• Write down how you feel as sometimes writing it down can get it out of your head.
• You are not on your own; there are others in the same position so look at social media forums (for example Facebook support groups). People there are going through similar challenges so they understand.
• Remember it’s normal to feel tired.
• Recovering after a flare up can be time-consuming and frustrating. Look out for the small things that can help your recovery during that time, such as distractions or small achievements (for example, doing a short online course, learning to paint, writing a diary, documenting your day with photographs, getting involved in a campaign or project you could do from home, discovering new recipes suitable for pancreatitis, etc.).
• Ask your Consultant if they are in touch with other patients or patient groups who had gone through something similar.
• For some people holistic therapies can be useful (for example, aromatherapy) but always check with your GP or Consultant if you plan to try any treatment and be aware that some alternative therapies (for example herbal remedies) could be dangerous.
• As hard as it is don’t let it beat you, you are stronger than you know and wiser than you feel.
• If you are struggling just take one day at a time. Don’t look too far ahead or back, just focus on today. However, remember that planning ahead can give you things to look forward too.
• Don’t give up hope and try to stay positive.
• Always remember there is professional advice and support available to you. Ask for help on your own terms.
• If you are a patient or family member reading these tips you are already winning as you have taken the time to read them all!

Suggestions for someone caring for a pancreatitis patient

Caring for someone with a chronic, painful and limiting condition can be difficult. Worry and fear are common and in some cases complex feelings of frustration and resentment might emerge. Understanding pancreatitis and its impact might help you provide better support and might also help you feel more in control. Eating can be a particularly challenging aspect of pancreatitis. Read the section ‘Helping friends and family to understand the challenges around eating and drinking’. And always remember the carer also needs support; this is particularly important for young carers. The best way to access support for young carers is to get a referral from the child’s school or to contact your Local Authority.

Communication is key

Different patients find different things helpful and supportive or unhelpful and upsetting. Often these things go unmentioned so the best way to help someone with pancreatitis is to discuss what is helpful to them and what they would like to do. It can be a fine line between treating your friend or family member like a real person or like a patient or invalid.

You will need to figure out whether you friend or family member wants to be asked how they are feeling or whether they don’t want to discuss their illness at all. Some people with pancreatitis like to be told they look well, where another person might hate being told that they look well when they are feeling terrible.

Making plans that can be cancelled

You will also need to be adaptable and flexible around friends and family members with chronic pancreatitis. Some people might prefer to be invited to all events and activities, as long as they can choose what they attend. Alternatively, another person may not want to be invited to things that they are unlikely to manage.  Pancreatitis will make your friend or family member unreliable and they will end up having days where they are too unwell to take part and will need to cancel, often with very late notice. They can’t help being ill and they will probably be as gutted as you are that they can’t attend. Please don’t be offended if your friend or family member has to cancel at the last minute.

When you do arrange to do things with your friend or family member talk to them about what adjustments can be made to increase the likelihood that they will be well enough to take part. For example maybe go to their house, think about the times of day they feel better or worse, allow for rest time if needed, and make sure there will be appropriate food and drink (non-alcoholic alternatives). Any adjustments will be really appreciated.

Managing feelings and expectations

Managing feelings and expectations can be extremely difficult but can really help. Some suggestions from people with pancreatitis include:

• Hate the disease, don’t hate the patient. They are doing their best even when it seems they are being difficult. We understand how frustrated and helpless you must feel and we want to get better. Most of the time we feel guilty for what you have to do on a daily basis.
• Take life day by day and be thankful for the good days.
• Patience… is about the only advice we can give. Be patient, understanding and supportive but try not to worry yourself too much because that will end up making you ill.
• Pain affects morale and well-being. It causes depression and anxiety. Pancreatitis pain is severe and any twinge or pain is terrifying in case it’s the beginning of another flare up.
• Just believe them when they are in pain!
• Be patient and tolerant; don’t take blow ups or arguments to heart. We don’t mean it, we are just frustrated or in pain.
• Don’t belittle our fears.
• Don’t stop asking us to do fun things.
• Remember it’s difficult for us too.
• Be there for them and help as much as you can.
• Be patient and listen to them. Sometimes we just want to vent and to know that we have someone to talk to.
• Learn about pancreatitis and its management to enable you to have a better understanding of the disease. It might also help you feel more in control.
• Learn how the medications help, which doses are needed, and when they should be taken.
• If you are a smoker, avoid smoking in front of your friend or family member.
• Encourage us to rest regularly, to pace ourselves as we will often try to push ourselves through an attack. This often results in a pattern of one good day followed by several bad days trying to recover.
• Be honest with us. If we really do look ill – say so in a tactful manner. There’s nothing worse than feeling like you have aged 20 years overnight and everyone tells you that you look well.
• Try not to worry if we say we do not need to stay in hospital. Once we have a diagnosis and all the medication (and painkillers) we feel much better in our own bed.
• During an attack hold our hand, and be ready to effectively deal with the emergency services advocating for timely pain relief.
• And most importantly, keep a sense of humour. When we are having a bad day it makes such a difference if you can just make us laugh.

Liaising with health professionals

People with chronic pancreatitis have to interact with a wide range of health professionals. This can be extremely challenging at times. Planning ahead and preparing for difficult situations can help.

Receiving the right information

Make sure you receive appropriate verbal and written information from your GP or Consultant. Your hospital team should ensure sufficient and correct information is passed down to your GP. One of the issues you should receive information about is your long term care. Be prepared for hospitals to refer you back to your GP. If you do not think that would be wise then tell them. Ensure you receive (or have access to) information on:

• Whether you have chronic or acute recurrent pancreatitis.
• What is/are the underlying cause(s).
• Any complications that might develop.
• Whether nutritional support is needed and what form it will take.
• Lifestyle interventions – is there anything you can change in your life style? Obviously giving up smoking and alcohol will be on the list but there may be other changes that would be advisable.
• During acute pancreatitis attacks, get an assessment of how long recovery will take. Don’t accept a standard answer (e.g. two weeks) because that is often not realistic. It might be much longer and it is important to be prepared and plan for the immediate future.
• Which tests and procedures might give you more insight into your illness and how you can best improve your condition.

When should I go to hospital?

You should go to A&E or see your GP urgently anytime that you suspect that you could be having an acute pancreatitis attack OR when you feel too unwell to cope at home with your home medication. Many patients have had bad experiences in A&E with long waits. It is common for the A&E doctors to do diagnostic tests, which is infuriating for a patient that already has a diagnosis. These tips might help:

• Ask your Consultant to write a letter to take to A&E/give to a paramedic. It should contain your diagnosis, what treatment to give you and who to contact to get further of advice on how to treat you.
• Always have a copy of your repeat prescription form with you and hand it into A&E or give it to a paramedic if you require an ambulance.
• Many patients have to travel some distance to see their Consultant and therefore attend a different hospital in an emergency rather than attending the hospital where they are treated. It is advisable to keep all the paperwork from your treatment and take this file to A&E with you.
• Some Consultants have a system where you can contact them when you are very unwell and they can either give advice on your treatment to your GP, so you can be treated at home, or may even be able to admit you directly so that you completely bypass A&E. Discuss these arrangements with your Consultant.

Tips to improve your hospital appointments:

• It is helpful to take someone with you when you go to a hospital appointment. They may think of additional questions to ask and you can talk though the appointment together afterwards.
• It is common to have a long wait at hospital appointments so it is a good idea to ensure that you don’t have to go somewhere else afterwards, pick up the children from school, etc.
• Hospital appointments are short and you have to wait months between appointments. It is a good idea to make a list of everything that you wish to discuss in the appointment and tick things off as you have asked them.
• Ask the Consultant to write down the names of any diagnosis, any tests or scans or any procedures. This way you can look these up when you get home or ask for more information in support groups.

Online resources that are useful to help manage chronic pancreatitis

Managing all aspects of chronic pancreatitis is complex and some people find that online resources can help. These are some suggestions:

• Medisafe is a great app for medication reminders.
• Facebook groups run by people who have been through it all or are new to pancreatitis.
• Exercise videos which cater for people who are sitting or in bed. They are often useful for getting you to sleep too as they encourage you to concentrate on something other than your pain, try: https://www.nhs.uk/conditions/nhs-fitness-studio/pilates-for-beginners
• When you are feeling better, try to invest in improving your health and wellbeing. The NHS Live Well website has many suggestions, not all will be relevant but some might be helpful.