Mental health and wellbeing

• Many people find that living with Crohn’s or Colitis can affect their mental health.
• Uncertainty about the future, symptoms and starting new treatments can make you feel anxious. You may also worry about body image and what others think of you.
• Your mental health can also affect your Crohn’s or Colitis. You may be more likely to have flare-ups and complications when your mental health is poor.
• A direct, two-way link between your gut and brain known as the gut-brain axis may partly explain the close link between your mental and physical health.
• There are lots of things you can do to improve your mental wellbeing. It’s also important to seek help when you need it.
• Talking therapies and medicines for depression and anxiety can help to improve mental health. This may help you cope with your Crohn’s or Colitis better.

Mental health is something we all have. And just like physical health, it’s something we need to take care of. Mental health is not just good or bad. It exists on a scale, which everyone experiences differently. You might move up and down this scale depending on what’s going on in your life. We all feel anxious from time to time or have days when we feel low. But for some people, these feelings progress to more serious problems. We use the term mental health problems in this information to describe illnesses or conditions you might be diagnosed with, like depression and anxiety.

You might also hear people talk about their mental wellbeing. There’s no set meaning for this term. People often use it to describe how they’re feeling and coping in daily life.

What does good mental health mean?

Good mental health means more than just not having a mental health problem, like depression. It can mean different things for different people, but it may include being able to:

• Feel positive about yourself (positive self-esteem)
• Build and maintain good relationships with others
• Be able to learn or work well
• Cope in a positive way with the stresses of daily life
• Fulfil your own potential
• Make decisions
• Contribute to your community

Good mental health and wellbeing allows us to connect with others and enjoy life.

Mental health is a major part of living with Crohn’s or Colitis. Research suggests that people living with Crohn’s or Colitis may be twice as likely to experience mental health problems, like anxiety and depression, as the general population. And around half of all people with the Crohn’s or Colitis say it has affected their mental health in some way.

Living with a long-term condition like Crohn’s or Colitis can trigger lots of different feelings and emotions. You might feel shocked or a sense of disbelief when you are first diagnosed and find it hard to adjust. You may feel anxious, frustrated, sad, scared, or angry about having the condition and dealing with distressing symptoms. Not knowing what might happen in the future may make you feel helpless and uncertain. You may feel very isolated or even ashamed about your condition.

These feelings are completely normal, and many people with Crohn’s or Colitis experience them from time to time. It’s not a sign of weakness. Long-term health conditions are a lot to deal with, and it’s natural that you might struggle to cope sometimes. Give yourself time and space to accept your feelings. For some people, these negative feelings can become overwhelming. This can lead to mental health problems like stress, anxiety, and depression.

It can be helpful to understand more about your mental health, recognise the feelings and know what you can do. Getting support in place and developing coping strategies can help. You’re not alone. We’re here to help.

A mood diary or mood tracker app can help you keep a record of how you’re feeling. You can also share this with your IBD team.

Crohn’s, Colitis and mental health problems can be taboo subjects and difficult to talk about. The more you can share with friends, family, and your healthcare team, the better it can be.

Our Talking toolkit can help you start the conversation. If you want to tell people about your condition and your mental health so they know how it affects you, the toolkit can help. You will find tools, tips, and support to start a conversation that can change lives.

There seems to be four main areas that trigger feelings of anxiety and depression in people with Crohn’s or Colitis. These include:

• The impact of the condition itself, including dealing with unpredictable and invisible symptoms
• Anxiety about new treatments
• Worries about body image
• Stigma associated with a condition like Crohn’s or Colitis

Of course, there are other things that can affect your mental health too. Even just trying to navigate healthcare systems can be stressful and add to the mental load. You may worry about what the future holds. And you may have other stresses in your life, whether they relate to your Crohn’s or Colitis or not.

You are more likely to experience poorer mental health at certain times such as:

• When you’re first diagnosed with Crohn’s or Colitis
• During a flare-up of your symptoms
• Needing to go into hospital for treatment or surgery, especially if you may need a stoma
• Starting a different treatment for your Crohn’s or Colitis
• Taking steroids, as these can cause extreme highs and lows in your mood
• Living with ongoing invisible symptoms such as fatigue or pain

It can help to be aware of the times when you may be at greater risk of changes in your mental health. You can then get the help and support you need.

Body image and self-esteem

Physical changes you may experience as part of your condition or treatment can affect the way you feel about your body. Physical changes can be due to:

• A direct effect of your Crohn’s or Colitis, such as changes in weight or skin problems
• Operations that have left scarring, or mean that you need a stoma
• Unwanted effects of steroids, including weight gain, a rounded ‘moon’ face, growth of body hair or stretch marks

It can be hard to get used to how your body looks or feels. A poor body image can affect your self-esteem. This may mean you avoid social situations or experience social anxiety. It can also lead to further problems with depression or disordered eating. Having a poor body image can also have a big impact on your sexual relationships.

For more information on body image, see our information on Sexual Relationships for more support.

Blaming yourself

You might wonder if it’s something you have done that has caused your Crohn’s or Colitis. Feeling like this can make it more difficult to adjust to the ‘new normal’ of living with the condition. We do not know exactly what causes Crohn’s and Colitis. But it’s probably due to a combination of factors including:

• Your genes
• Problems with your immune system
• Changes in the bacteria that live in your gut
• An external trigger, like smoking, diet, infection or antibiotic use

Stigma and isolation

Feelings of stigma and isolation are common when living with a condition like Crohn’s or Colitis. Certain symptoms can make you feel worried or ashamed about what others think of you. You may also have negative feelings about yourself, which can be just as hard to deal with.

Symptoms like diarrhoea, pain and fatigue can limit how much you can go out with friends and family. This may set you apart and increases isolation. This can be hard for others to understand when your symptoms are not visible. These feelings can increase the risk of depression or anxiety.

Finding a community of people who understand what you’re going through can really help. Crohn’s & Colitis UK have Local Networks across the country. You can connect with people online through our Facebook Forum. We also offer Virtual Social Events to anyone across the UK affected by Crohn’s or Colitis.

Struggling with your mental health can make it more difficult to manage your Crohn’s or Colitis. You might struggle to find the motivation to look after yourself. Or it might make you less likely to take your medicines correctly.

Having poor mental health is also associated with worse outcomes for your Crohn’s or Colitis. This can include increased risk of:

• Flare-ups
• Admission to hospital or needing surgery
• Severe disease or more complications

Getting help to improve your mental health can make a real difference to living well with your condition. We know this isn’t always easy. But knowing what to look out for, understanding when you might be most at risk and reaching out for help can make a real difference.

We know that people with Crohn’s or Colitis are at greater risk of mental health problems like stress, anxiety, and depression than the general population. At the same time, mental health problems, like stress, can have a negative effect on gut symptoms. People who have both mental health problems and Crohn’s or Colitis can end up in a cycle, with each one making the other worse.

The link between Crohn’s and Colitis and mental health may be partly caused by something called the gut-brain axis. The gut-brain axis is a direct two-way link between the gut and the brain. It can help to explain the close link between mental and physical health in conditions such as Crohn’s and Colitis.

It’s not clear exactly how this link works, but there are several ways your gut and brain communicate. These include through nerve signals, hormones and other chemicals produced by your brain or gut.  Your gut microbiome is also thought to be involved. This is the trillions of bacteria and other micro-organisms that live in your gut.

Inflammation in your gut may be directly linked to your mood and emotions through these different pathways. Keeping gut inflammation under control may help to improve your mental health. Your Crohn’s or Colitis medicines can help with this.

There is some evidence to suggest that antidepressant medicines may help to reduce gut symptoms and flare-ups in Crohn’s and Colitis. Some studies have also shown that if you have depression, taking antidepressants may reduce your risk of developing Crohn's or Colitis. This may be through reducing gut inflammation. We need results from larger studies to be sure whether antidepressants can help in Crohn’s and Colitis.

Stress

Some stress is a natural part of life. The sort of stress that you might experience if you’re taking an exam or running a marathon is often helpful as it can make you feel more alert. But when stress becomes a problem, it may also cause negative feelings, like making you feel irritable, overwhelmed or tense. Stress can have physical effects too. It might contribute to sleep problems and headaches, or trigger panic attacks. Some symptoms, like diarrhoea and fatigue can be like those of Crohn’s or Colitis.

You may be more likely to experience increased stress if you’re living with a long-term condition like Crohn’s or Colitis. And it may have a greater impact on you too. There’s some evidence that stress might make your Crohn’s or Colitis symptoms worse and increase the risk of a flare-up.

There is some evidence that stress of major life events, like losing your job, moving house, or losing a loved one can trigger a flare-up up to three months later. These are situations you may not be able to avoid. It’s important to be aware of how you are feeling as this can prompt you to get as much support as possible. 

Anxiety

There are many reasons why you may become anxious when you live with Crohn’s or Colitis. You may worry about possible symptoms and the fear associated with experiencing them.

These anxieties are not always constant but may just appear in certain situations. For example, you might feel anxious if you do not have easy access to a toilet, but then return to normal when you reach home.

You may worry about treatment with medicines because of concerns about side effects. Or you may feel anxious about needing hospital treatment or surgery, even if the risks are small.

These feelings might come and go. But for some people, they can lead to ongoing problems with anxiety, or an ‘anxiety disorder’. You are more likely to have anxiety problems when your condition is active and you are dealing with symptoms. But anxiety can make gut symptoms worse. Finding ways to manage your anxiety can reduce your chances of having a flare-up and needing steroid treatment. You can read more about how to improve your mental wellbeing and getting help for mental health in the section How to look after your mental health.

Anxiety can cause both emotional and physical symptoms. These can include:

• Faster, irregular, or more noticeable heartbeat
• Feeling lightheaded and dizzy
• Headaches and muscle aches and pains
• Sleep problems
• Feeling tense, nervous, or restless
• Feeling like you can’t stop worrying
• Feeling low or tearful
• Having difficulty concentrating

It may not always be easy to recognise that anxiety is the reason you’re acting differently. Some of the symptoms may be like those of Crohn’s or Colitis. Others, like a fast heartbeat or feeling dizzy, could also be symptoms of anaemia. This is a common complication in people with Crohn’s or Colitis, when you have a low number of red blood cells in your blood.

Find about more about anxiety from Mind or Anxiety UK.

Low mood and depression

Everyone feels low or down from time to time. There are lots of reasons why Crohn’s or Colitis can make you feel low too. Getting a diagnosis, developing new symptoms or side effects, and managing existing ones are just some.

There are things you can try to help improve your mood. Find out more in the section How to look after your mental health.

Depression involves having a low mood, but it’s more than that. You may have depression if:

• Your feelings of low mood are so bad that they interfere with your daily life
• You have had a low mood that’s lasted for weeks or months

You're most at risk of depression when your Crohn’s or Colitis symptoms are worse. As well as the stress and worry of dealing with symptoms, inflammation in your gut may affect your mood. But coping with the fluctuations and unpredictability of the condition can cause ongoing stress. This means you may experience anxiety and depression even if your symptoms are well controlled.

If you have depression, you might feel:

• Sad, upset or tearful
• Empty or numb
• Low in confidence or self-esteem
• Hopeless
• More tired than usual or have difficulty sleeping
• Like you’re not getting any enjoyment or pleasure out of life

You may not feel able to concentrate on everyday things. You may also avoid social activities you used to enjoy. Some people self-harm or have suicidal thoughts if they’re feeling really low.

If you are experiencing depression, finding the motivation to look after yourself and take your medicines can feel impossible. But not sticking to your usual treatments can lead to more frequent flare-ups. And this can make you feel even worse.

Read more about how to get the help you need.

Find out more about depression from Mind.

Post-traumatic stress

Many people with Crohn’s or Colitis experience traumatic events because of their condition. This might include needing a hospital stay, having surgery on your bowel or dealing with severe symptoms. Some people develop post-traumatic stress following this kind of event. In post-traumatic stress, you keep experiencing stress symptoms over a long period of time after the event that caused it. You may also have nightmares, flashbacks, find it hard to concentrate and feel constantly worried about potential threats. You’re also more likely to experience problems with depression, anxiety, and fatigue.

Post-traumatic stress may also cause changes in your body that affect the course of your Crohn’s or Colitis. You may be more likely to have flare-ups and a poorer disease outcome.

If you’ve been through a traumatic event, like a hospital stay, be aware that this could have a lasting effect on how you feel. It’s important to seek help when you need it. Read more in the section on Getting the help you need. 

Eating problems

Food can hold many challenges for people with Crohn’s or Colitis. You may feel that certain foods trigger your symptoms, which can put you off eating. This can be upsetting if you usually enjoy food. Medicines like steroids can affect your weight and this can change how you feel about eating too.

These challenges can lead to behaviours like binge eating, skipping meals, or restricting food. This means you may risk not getting enough nutrients from food, which can complicate your condition.

For some people, restriction of food may become severe, until they will only eat a narrow range of ‘safe’ foods. This is called Avoidant Restrictive Food Intake Disorder (ARFID). Nearly 1 in 5 people with IBD have some symptoms of ARFID. Talk to your IBD team if you recognise these symptoms. They may be able to refer you to a dietitian, who can support you to improve your nutrition.

You can also develop eating disorders, such as anorexia or bulimia if you have Crohn’s or Colitis. If you think you may have anorexia or bulimia, speak to your IBD team or GP. They are treatable. Find out more about eating well with Crohn’s or Colitis in Food.

Beat have more information about eating disorders.

It’s important to look after your mental health all the time, even when you are not feeling low. Good mental health can help you to cope better with your Crohn’s or Colitis. The following tips have been recommended by people living with Crohn’s or Colitis.

Find a community of people who understand what you’re going through. Crohn’s & Colitis UK have Local Networks of volunteers across the country. You can also connect with people online through our Facebook Forum or Virtual Social Events.

Learn about the condition and treatments from good sources of information such as from Crohn’s & Colitis UK. Understanding the benefits as well as risks of treatment may help to relieve some of your anxiety. You may also be able to find new ways to manage troubling symptoms. If you’re worried about any aspect of your condition, ask your IBD team or call the Crohn’s & Colitis UK Helpline on 0300 222 5700.

Talk about your Crohn’s or Colitis. Talking can help to process things and give you a fresh perspective. It can also help family, friends or colleagues to understand what you’re going through. It may be that talking over your worries with a friend or family member is enough. Or you may prefer talking to a trained counsellor. If you find it tricky to start the conversation, try our Talking Toolkit.

Write down your feelings. Some people find recording how they feel helpful. You could try keeping a journal or writing a blog. You can use our appointments journal to do this. Even just keeping notes of how you feel on your phone may help you to spot patterns. And it can help to remind yourself that you have overcome difficult times before. 

Try an app. There are many apps available aimed at helping you manage different aspects of your mental health and wellbeing. They may offer anything from mood trackers, guided meditation, coping mechanisms, and wellbeing tips. You may need to try a few to see if they work for you. Do remember they’re not a substitute for accessing treatment if you need to. The charity Mind has put together a library of mental health apps to help you manage your mental health.

Ask for help when you need it. Ask your GP or IBD team to arrange for you to see a psychologist or appropriate counsellor. In some areas you may be able to access talking therapies services directly. See the section Getting the help you need.

Get regular exercise. Regular exercise can really help with mental wellbeing. It can be difficult thinking about exercise when you have Crohn’s or Colitis. But just doing a little exercise whenever you feel able can make you feel better. It may give you more energy too. Do whatever feels right for you. Both low-intensity exercise like walking or yoga and more high-intensity workouts can benefit mental health. Building up your exercise levels can be a great goal and can help with fatigue too.

Colostomy UK have good information about exercising with a stoma.

Find time to relax. Learning some relaxation techniques is a great way to help when you’re feeling stressed or anxious. It may help to reduce anxiety, pain and stress levels and improve your mood if you have Crohn’s or Colitis. Mind have some great tips for relaxation.

Give back to the community. Volunteering can boost your mental wellbeing by getting involved with your community, gaining new skills, and providing a sense of pride and achievement. It can also help you connect with other like-minded people and reduce isolation. Crohn’s & Colitis UK offer many exciting volunteering opportunities, some of which can be done from home.

Be kind to yourself. Accept that you might have to change plans at times – and don’t feel guilty about it. Some people find it helps to set smaller goals or ‘micro-tasks’. This might make things seem less overwhelming and more achievable.

Don’t compare yourself to others. It can be helpful to learn about other people’s experiences on forums or social media. But one person’s journey with Crohn’s or Colitis can be very different to someone else’s. You might find this can give you unrealistic expectations. Focus on what works for you.

Make time for what’s important. Try to find those moments of joy and positivity whenever you can. Remind yourself that your life is not just about your Crohn’s or Colitis. Make sure you take the time to do the things you enjoy and allow you to still be you.

Treatments and support for depression, anxiety and other mental health problems include talking therapies and medicines.

Talking therapies

Talking therapies involve talking to a trained professional about how you’re feeling. There are different types of talking therapies. We describe some of the main ones used in Crohn’s and Colitis below.

There is evidence that people with Crohn’s or Colitis who get psychological support:

• Have improvements in anxiety and depression
• Are more able to cope with symptoms
• Are more likely to continue taking their medicines
• Have lower stress levels

More evidence is needed to say whether psychological therapies can also improve gut symptoms associated with Crohn’s or Colitis. But it’s worth remembering that good mental health is generally linked to a lower risk of problems and complications.

Feeling better can take time. Everyone is different, and people respond to therapy differently. Seek as much support as you can until you find what works best for you.

Acceptance and Commitment Therapy (ACT)

Acceptance and Commitment Therapy (ACT) aims to help you accept difficult emotions and experiences. With Crohn’s or Colitis, these may include difficult thoughts and feelings you might have about living with your condition. At the same time, ACT encourages you to adopt positive life values and commit to actions and changes that move towards these values.

ACT can help you to engage with different situations that you might normally avoid if you’re worried about symptoms. You learn to accept and be open to living with emotions, concerns and beliefs that may be holding you back.

There are ACT workbooks and online programmes you can try.

Mindfulness-based therapies

Mindfulness involves focusing on the present, and noticing when we are stuck in patterns of worrying about the past or future. Mindfulness-based therapies build on mindfulness techniques in everyday life, like yoga and meditation. They can involve training in mindfulness through meditation and group discussions.

Mindfulness can be helpful for Crohn’s and Colitis, as a way of developing skills for managing stress. This can be useful when you’re dealing with a flare-up. Mindfulness-based therapies have been shown to help with things like anxiety and depression. A mental health practitioner will be able to support you in learning mindfulness techniques.

Cognitive Behavioural Therapy (CBT)

The aim of CBT is to help you explore and change unhelpful patterns of thinking and behaviour. You set goals with your therapist and may carry out tasks between sessions. You may learn to reframe your thinking and change how you act or respond. This can help with changing behaviours, like avoiding going out or isolating yourself.

This type of therapy has been shown to improve depression and anxiety in people with Crohn’s or Colitis. It can also help you to cope better with your condition.

Medicines

Up to 3 in 10 people with Crohn’s or Colitis take antidepressant medicines. These can help with depression and anxiety. But currently there are no guidelines to suggest which ones might be most effective in IBD. You may be prescribed other medicines called sedatives to help with anxiety too. Find out more from Mind about antidepressants and anxiety medicines. Your GP or IBD team can talk you through the pros and cons of taking them.

Early studies suggest antidepressants may reduce inflammation outside the brain. This means they may improve not only mood but some gut symptoms. Antidepressants are known to help with gut symptoms in other conditions, like irritable bowel syndrome. Doctors often prescribe them for this reason in inflammatory bowel disease too. This is known as ‘off-label’ as they have not yet been approved for this use. Research is continuing in this area.

Contact your GP or IBD team if you need psychological support. They may be able to arrange it for you. Depending on where you live in the UK, you may also be able to access certain services directly, without a referral from a doctor.

• In England you may be able to refer yourself directly to an NHS talking therapies service without referral from a GP.
• In Scotland you can refer yourself for an assessment for Cognitive Behavioural Therapy (CBT) through Living Life.
• In Wales you can register for an online CBT programme through the NHS.

In Northern Ireland, your GP can refer you. There is no NHS self-referral option.

You can also look for a counsellor or psychotherapist using the British Association for Counselling and Psychotherapy Therapist Directory. You can use the directory to check which therapies they offer and specialise in.

It is especially important to seek psychological support if you’re managing pain or fatigue or if you are considering surgery. The type of therapy that works best for you will depend on the challenges you are facing.

All IBD teams are different, but the IBD standards and NICE state the team should include access to a psychologist or counsellor. Don’t be afraid to ask to see these health professionals.

You can also access support through The Wren Project. The Wren Project is a registered charity which offers a service of free 1-1 listening support to people in the UK living with autoimmune disease.

We follow strict processes to make sure our information is based on up-to-date evidence and easy to understand.

Please email us at evidence@crohnsandcolitis.org.uk if:

• You have any comments or suggestions for improvements
• You would like more information about the sources of evidence we use
• You would like details of any conflicts of interest

You can also write to us at Crohn’s & Colitis UK, 1 Bishop Square, Hatfield, AL10 9NE, or contact us through our Helpline: 0300 222 5700