Psychological Health & IBD

People with inflammatory bowel disease (IBD) are more likely to experience significant mental health problems, such as depression and anxiety. The gut and brain are closely connected, so it’s important to take care of both the mind and body to manage IBD well. 

Why is mental health important in IBD?

IBD refers to a group of chronic digestive diseases that cause inflammation of the gastrointestinal system, including Crohn’s disease and ulcerative colitis. People with IBD face challenges that can make life difficult. They may find themselves feeling down, worried and uncertain at times. This is a normal part of living with an illness which can be disruptive and unpredictable.

However, people with IBD have a greater risk of experiencing more significant mental health problems, such as depression and anxiety. These problems might disrupt management of the IBD itself, which could lead to more active or severe symptoms and disease.

Physical and mental health cannot be separated. A person’s ability to live well with their IBD depends on their ability to manage the physical burden as well as psychological and social difficulties that may both influence and arise from their illness. Addressing mental health is therefore a vital part of managing IBD. What psychological problems are common in IBD?

Experiencing recurrent symptoms of abdominal pain, diarrhoea, fatigue, frequency and urgency can be both anxiety-provoking and disheartening. Many people with IBD become worried and anxious about their symptoms. Other emotions commonly reported include embarrassment, shame, guilt, frustration, anger, worthlessness and hopelessness. Approximately one-third of people with IBD experience high levels of anxiety and/or depression. This rate increases to about two-thirds when disease is active.

The ability to work, socialise and enjoy meaningful relationships can be disrupted. Avoiding certain situations, reducing activities and withdrawing socially are strategies people might use to help them cope. Unfortunately, these lead to poorer mental health over time.

Other common psychosocial problems reported include social isolation, stigma, low self-esteem, sexual and intimacy issues, sleep disturbance, poor body image, and restricted eating.

How do mental health and physical health interact?

Most people would agree that our mind and gut are connected in some way – this can be seen in the language we have developed to describe common human experiences, such as those that are gut wrenching, give us butterflies, or make us feel sick to our stomach. The gut and the brain are actually closely connected via the gut-brain axis, a communication system that allows messages to flow in both directions – from brain to gut, and gut to brain.

On a day-to-day basis, the brain and gut communicate frequently about many things, such as how hungry or full we are, the content of what we have eaten and whether it is safe, how we are feeling, and whether or not we are stressed.

It therefore makes sense that a problem in one can very well influence, lead to, or worsen, a problem in the other. Research has shown that over time, people with IBD have an increased risk of developing mental health problems, and those who have mental health problems have an increased risk of a disease flare.

Does this mean that stress causes IBD?

A common question about the link between mental health and physical health is whether psychological stress causes the development of IBD. Many people with IBD connect the onset of their IBD and subsequent disease flares to stress. There is no clear evidence that stress leads directly to the development of IBD, though stress and other psychological factors may play contributing roles. The precise causal factors of IBD are not known, but a combination of genetic, environmental, immunological factors and gut bacteria can interact to allow IBD to develop.

How might poor mental health affect my IBD?

Psychological problems are associated with more frequent disease flares, more emergency hospital presentations and admissions, and (in Crohn’s disease) a greater risk of surgery. The contribution of poor mental health is likely to be indirect by negatively influencing mood, thinking and behaviour. For instance, when anxious and depressed, people may be less inclined to take their IBD medication(s) and carry out important health behaviours (e.g. eat well, be active).

Additionally, psychological problems can make IBD symptoms worse. Stress can increase gut sensations and muscle tension and speed up or slow down movement of food through the system. Stress can make people more focussed on their gut: over time this can lead to greater sensitivity. For people with IBD who also have irritable bowel syndrome or functional dyspepsia, psychological factors are thought to play a central role in the development and maintenance of symptoms.

Psychological problems can also decrease coping and resilience, leading to less optimal medical management and greater disease burden.

What key signs should I look out for?

Feelings

• Worried, anxious
• Depressed, hopeless
• Ashamed, embarrassed
• Angry, frustrated
• Irritable, agitated
• Numb, empty
• Worthless

Thoughts

• Excessive worrying
• Catastrophising
• Dwelling on negatives
• Self-doubt and criticism
• Difficulty concentrating

Behaviours

• Avoidance
• Social withdrawal
• Reduced activity
• Oversleeping or insomnia
• Overeating or under-eating

Physical signs

• Further fatigue
• Difficulty relaxing
• Restlessness
• Reduced or increased appetite
• Reduced or increased sleep

For more information, visit the beyondblue website (https://www.beyondblue.org.au/the-facts).

What should I do if I need help with my mental health?

If living with IBD is impacting your mental health and wellbeing, it is important to speak up and talk to your treating team. Doctors and other clinicians are increasingly recognising that managing IBD should not solely be a medical approach. It also needs to address psychological and social health.

You may benefit from participating in psychological therapy if you are experiencing poor mental health. This might be provided by a psychologist, psychiatrist, counsellor, or other mental health trained clinician. Ideally, the practitioner that you work with should be familiar with IBD and the common links with mental health.

Psychological therapy can also aim to improve adjustment to a new diagnosis or progression of disease, increase medication adherence and self-management, facilitate health behaviour change (e.g. smoking cessation, improving nutritional intake) and calm brain-gut communication.

Some of the types of psychological intervention available, amongst others, include:

Cognitive behavioural therapy (CBT)

Focussed on changing unhelpful thinking and behaviour; learning practical skills, improving coping.

Acceptance and commitment therapy (ACT)

A mix of strategies such as mindfulness to help accept what cannot be controlled and live more in line with personal values.

Gut-directed hypnotherapy

A mind-body technique aimed at calming brain-gut communication, improving relaxation, or achieving other therapeutic changes.

Essentially, the main aims of psychological therapy are to improve coping, enhance quality of life, and optimise ability to manage and live with IBD.

Where can I access psychological intervention?

A small number of hospital IBD services and private clinics may have co-located mental health support. If not, speak with your general practitioner (GP) about your psychological needs. You may be eligible for a referal for a mental health care plan (MHCP): this depends on the type and severity of the presenting problems. With a MHCP from your GP, you can currently access a rebate for psychological services under the Medicare Better Access Scheme for up to 20 sessions per calendar year. Another option is the GP Management Plan and Team Care Arrangement for chronic disease management (5 sessions per year). A GP referral is needed for both options. You can visit the website of the Australian Psychological Society for more information. Alternatively, you can self-refer to a psychologist in private practice (for guidance, see the Find a Psychologist directory on the APS website

There are also online options for self-directed psychological intervention. The following two online programs are recommended:

Tame Your Gut

Tame Your Gut is a 10 week online Cognitive Behavioural Therapy (CBT) program designed for people with IBD, by A/Prof Antonina Mikocka-Walus, Prof Jane Andrews, and A/Prof Peter Bampton.

IBD.Mindovergut.com

IBD Mind Over Gut is a website developed by Dr Simon Knowles, which provides current information and free five-week optimal health resilience programs for people with IBD.

Telephone and online support

For further information regarding support options for living with IBD including telephone helplines and local support groups.

Telephone and online support is available through Lifeline (13 11 14) and beyondblue (1300 22 4636). For emergency/crisis support contact mental health triage service in your state.

Summary

It is important to recognise and address mental health as part of IBD management. People with IBD commonly experience psychological problems such as anxiety and depression. Poor mental health can make managing the disease more challenging. Part of living well with IBD is coping with numerous challenges and addressing emotional difficulties as they arise. If you are experiencing any of the problems discussed in this fact sheet, please consider speaking with your IBD team or GP about accessing psychological intervention. There are several options available where support is needed.

Wellbeing checklist

Use our wellbeing checklist to start a conversation with your doctor.

Research shows a significant association between symptoms of depression and/or anxiety and flare ups in Inflammatory Bowel Disease (IBD)*. This is because the brain and gut are in constant conversation through a network of neural, hormonal and immunological messages and if you are living with IBD, these lines of communication are disturbed.

A survey of people living with IBD in Australia found that whilst half of those who responded had signs of mental distress, only 16% had ever been directly asked about their psychological health by their doctor**.

For Luke, managing his wellbeing is a constant priority after being diagnosed with IBD at 14.

How do I start a conversation?

It can be overwhelming and a bit stressful to start a conversation with your doctor about how you’re feeling – but it is important to know you are not a burden when you want to talk about how you are feeling.

For Daniel, knowing he can talk about what’s on his mind with his doctor helps

It is normal to feel a bit down or anxious about your IBD and your healthcare professional can provide a safe space for you to share how you are feeling and provide support when you need it.

Simply filling out this wellbeing checklist can be a good starting point. Taking it along to your next appointment can help start a conversation.

For Catherine, being kind to herself and being open with her doctor is key to helping her feel in control of her IBD

Where can I find further support?

There are a number of places you can visit for support, advice or just a friendly ear.

For 24/7 counselling or crisis support, please contact Lifeline on 13 11 14 or the Beyond Blue Support Service on 1300 22 46 36.

You can maintain a healthy mind and a healthy body by working with your healthcare professional hand in hand.

So start a conversation today.

This information has been developed in partnership with Janssen Australia and New Zealand. It is provided for education and information purposes only and is not intended to replace advice from your doctor or other registered health professional.

References

• Mikocka-Walus, A. et al. Clinical Gastroenterology and Heptaology, Volume 14, Issue 6, 829-835.e1
  ** Crohn’s and Colitis Australia. My IBD Experience – Research Report 2018

Acknowledgements:

Sections on this page were developed in 2021 by the GESA IBD Patient Information Materials Working Group