Fatigue & IBD

Many people with Ulcerative Colitis or Crohn’s Disease (the two main forms of Inflammatory Bowel Diseae - IBD) suffer from fatigue. This information explains what fatigue is, what may cause it, and possible ways of reducing it.

Much of the research in this information sheet is based on results from the Crohn’s & Colitis UK study funded by the Big Lottery Fund. The quotes throughout the information sheet are also taken from this study. More details about the study can be found at the end of this information sheet. 

The above animation was made possible thanks to the support of Celgene, who had no input into the content or design

Fatigue can be described as an overwhelming sense of continuing tiredness, lack of energy, or feeling of exhaustion that is not relieved after rest or sleep. It is far more than the ordinary and usual tiredness that anyone may feel after they have done a lot of physical or mental activity. For people with Crohn's Disease or Ulcerative Colitis, fatigue can feel physical (a lack of energy or strength), mental (a lack of motivation, concentration or alertness) or a combination of the two.

Fatigue can be very unpredictable, varying from day to day or even hour to hour. It can come on suddenly with no warning. People sometimes describe it as like ‘hitting a brick wall’.

Just feeling very, very weary, and no inner energy...I’m “bone weary” is the old way of describing it.

Fatigue in IBD study participant

Fatigue in Crohn's or Colitis is very common – over three-quarters of people experience fatigue during an IBD flare-up.

There doesn’t seem to be a major difference in the levels of fatigue between people with Colitis and people with Crohn’s. However, some research suggests that fatigue may be more common in women, and may be worse in people with Crohn’s.

Many people find that their fatigue improves as their Crohn's or Colitis improves. For some, there can be a time lag of weeks or months before they regain their normal energy levels. Sometimes the fatigue doesn’t go away even when other Crohn's or Colitis symptoms are under control. Fatigue continues to affect two in every five people whose Crohn's or Colitis is in remission.

I’ll be functioning in what I consider to be a perfectly normal way and feeling great one minute. And the next minute, for no reason whatsoever, I’ll suddenly drain and have no energy.

Fatigue in IBD study participant

There are many factors that have been associated with fatigue in Crohn's or Colitis. It is likely that these factors influence each other, so you may find that a combination could be contributing to your fatigue.

Inflammation
During a flare-up, fatigue may be caused by the body’s response to inflammation and illness. Chemical signals that are produced during inflammation act directly on the brain to cause sickness behaviours – such as lack of motivation, tiredness and loss of appetite.

Pain
Pain is a common symptom for people with Crohn's or Colitis and may be caused by a number of factors, including inflammation, blockages and bloating in the gut, along with pain caused by manifestations of ICrohn's or Colitis in other parts of the body, such as arthritis. In some cases, pain will remain during periods of remission. Dealing with pain can be draining. Pain may contribute to fatigue through poor sleep quality, reduced physical activity and emotional and psychological distress.

Nutritional deficiencies
Nutrient and vitamin deficiencies in people with Crohn's or Colitis may be caused by diarrhoea, a loss of appetite or poor absorption through the inflamed gut wall.

Anaemia, a common complication of Crohn's or Colitis, may worsen fatigue. People with anaemia carry less oxygen in their blood, which can mean they easily become exhausted.

In people with Crohn's or Colitis, anaemia can occur due to:

• a persistently low level of haemoglobin, a protein in red blood cells that carries oxygen around the body. This can result from poor absorption of iron in the gut
• low numbers of red blood cells, which may be caused by loss of blood from the
inflamed wall of the gut, or by deficiencies in vitamins B12 and/or folate

Low vitamin D levels may also contribute to fatigue. Vitamin D is important for keeping your bones, muscles and immune system healthy.

Emotional stress/psychological disorders
Anxiety, depression and stress are consistently associated with fatigue in people with Crohn's or Colitis – however it is not clear whether anxiety, depression or stress cause fatigue, or are a result of fatigue. Emotional and psychological stress can trigger inflammation and pain, and as described above, these factors may contribute to fatigue.

Medication
Steroids and drugs that alter the immune system – including azathioprine, mercaptopurine and methotrexate – have been linked to fatigue in some people.

Disturbed sleep
Poor sleep quality may be the result of pain or having to use the toilet multiple
times during the night.

Other possible causes
It is unclear why fatigue doesn’t always get better when the Crohn's or Colitis does, and why it can continue even during remission.

In some cases, people may think they are in remission because they do not have any obvious symptoms of Crohn's or Colitis, such as diarrhoea or bleeding. But they may still have some inflammation in the wall of the gut that could be causing their fatigue

In the Crohn’s & Colitis UK Fatigue in IBD study, available at fatigueinIBD.co.uk, a number of other factors were suggested as possible causes for fatigue. These included:

• Diet and alcohol
• Being overweight or underweight
• Other health problems
• Extremes of weather
• Lack of support or understanding

Any of these factors may lead to fatigue. However, in some people there is no obvious explanation.

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis or ME, is a long-term illness with many symptoms, the most common of which are extreme tiredness and generally feeling unwell. CFS may be diagnosed if you suffer from long-term fatigue that can’t be explained by other causes. There is increasing evidence that inflammation in the gut may contribute to the development of CFS.

Fatigue can affect many aspects of life. Some people find it difficult to perform everyday functions when their Crohn's or Colitis is active, because of both bowel symptoms and fatigue. Fatigue may affect the lives of people with Crohn's or Colitis in many different ways:

• Physical Activity
Low energy levels can make it very hard to take part in physical activities, such as sport. Some people find they don’t have the energy to carry out everyday tasks such as driving, housework or collecting the children from school. On very bad days, even walking from one room to another may require great effort.

• Memory and concentration
Some people find that fatigue makes it difficult to think logically. You may find that it can affect your concentration and memory. When you are very fatigued, you may feel you cannot speak properly, and may stumble over your words. Some people call this ‘brain fog’. See Talking about fatigue below.

• Social Activities
Unpredictable fatigue can make it difficult to take part in social activities. This may mean that you refrain from going on holiday, travelling, socialising, or taking part in hobbies or interests.

• Emotions
Fatigue can have an effect on your emotions. If you can’t do as much as you would like, you may feel frustrated and angry. Some people feel isolated and lonely if they find it difficult to socialise with friends. This can lead to low confidence and depression. You may find it helpful to discuss your feelings with a counsellor. To find out more, see our information sheet Counselling for IBD.

• Relationships
Some people find that fatigue has a negative effect on their relationships with partners, friends and family. For example, some people may feel that, because their condition cannot be seen, their family and friends don’t appreciate how fatigued they are. You may find that you feel guilty if your partner or family have to do extra things to help, or if they miss out on doing things with you. Being open and honest about your condition may be helpful. If fatigue is having an impact on your sex life, you may find our information sheet Sexual Relationships and IBD helpful.

• Work and education
Fatigue can affect employment and education. Some people with fatigue may be able to manage a full-time job, while others may struggle with such a commitment. Some experience fatigue so strongly that they have to give up work. Working part-time or reducing the number of hours worked each day can sometimes help manage fatigue, but this might have financial implications. Our information sheet, Employment and IBD: A guide for employees provides more information on your options and how you might be protected by law.

Students with fatigue may find studying difficult, and may worry that fatigue will limit their achievements and job aspirations. Schools and universities can often work with students to help them cope with periods of IBD-related fatigue, such as setting extended deadlines or giving extra time during exams. See Students with IBD: A guide for students for more information.

I’ve sat in the kitchen and cried, because I can’t make a decision on something and the children are asking. And I’m so tired.

Fatigue in IBD study participant

It can be difficult to discuss fatigue and to explain the problems it causes. You might find it difficult to talk to your doctor about your fatigue, and therefore miss out on receiving help.

During the Crohn’s & Colitis UK Fatigue in IBD study, people with Crohn's or Colitis used some of the following words to describe their fatigue:

• Brain fog
• A big black hole
• Being woozy or fuzzy
• Zombie mode
• Overwhelming heaviness
• Just shattered
• Completely wiped out

You may find it helpful to use some of these descriptions when you are talking to your healthcare team.

Some doctors and nurses are not aware how much fatigue can affect people with Crohn's or Colitis, so they may not ask about it during an appointment. Fatigue is not a personal failing, and is nothing to be embarrassed about. It’s important that you discuss all of your symptoms and concerns with your doctor or IBD team. Of course, telling doctors and nurses you are tired doesn’t ring the same alarm bells as saying you have an immediately dangerous symptom. But, living with persistent fatigue is unacceptable, so you may have to push more than usual to ensure you get the proper care you need.

I think there can a bit of a stigma attached to fatigue where people might struggle through it not wanting to admit to it for fear of being seen as lazy.

Shirley, age 39
Diagnosed with Ulcerative Colitis in 1993 

The Crohn’s & Colitis UK Fatigue in IBD study, funded by the Big Lottery Fund, led to the creation of a new IBD Fatigue Scale to measure the severity and impact of fatigue. You can find this at fatigueinIBD.co.uk/questionnaire. If you find it difficult to talk about fatigue, you may find it helpful to print the questionnaire and show it to your healthcare team.

There is also a checklist you can use to consider possible causes of your fatigue, in order to make sure nothing is overlooked. You will be able to fill in some items yourself, but for others you will need a doctor or nurse to give you the information. You can find the checklist at fatigueinIBD.co.uk/checklist.

There’s a whole range of symptoms that employers, GPs, family, should be aware of as a result of your condition. ‘Tiredness’ is just one of them.

Fatigue in IBD study participant

There are a range of actions you can take to reduce or manage your fatigue.

The first and most important thing to do is to ask your doctor or IBD nurse to check that you do not have active Crohn's or Colitis. This might be done with a blood test or stool test. If your Crohn's or Colitis is active, then you will need treatment to see whether your fatigue improves as your Crohn's or Colitis improves. This may mean changing the dose or type of medicine that you are taking. You should also speak to your doctor if you think your medication may be causing your fatigue, as they might be able to adjust the dose or find an alternative medicine.

If your Crohn's or Colitis is in remission, you could ask for a blood test to check for anaemia, iron stores, vitamin B12, and other chemical or nutrient deficiencies.

Those experiencing emotional or psychological stress should speak to their GP or IBD team about accessing specialist support to help cope with this. Research has shown that counselling or ‘talking therapies’, such as cognitive behavioural therapy, can reduce stress and depression, and improve quality of life in people with Crohn's or Colitis – and may also be beneficial in improving fatigue. For more information on the different types of counselling and how it may help you, see our information on Mental Health and Wellbeing.

There is some evidence that low to moderate intensity physical activity may reduce IBD fatigue. You could try gradually to increase the amount of physical exercise you do, while being careful not to overdo it. This can be simple activities, such as walking rather than catching the bus for short journeys, or going to exercise classes. It is important to achieve the right balance between doing too much and exhausting yourself, and not doing enough to make a difference. You might need to build up your activity level slowly over several weeks. See our information on Living with Crohn's or Colitis for tips on exercising with Crohn's or Colitis.

If you smoke, stopping smoking can also help to reduce Crohn's or Colitis fatigue. You may find our information sheet Smoking and IBD helpful.

If pain is contributing to your fatigue, you may wish to discuss pain management strategies with your IBD team. There are a number of options that may help with pain in Crohn's or Colitis, many of which have already been mentioned above as ways to tackle fatigue. These include drug treatments, exercise or physical therapy, stopping smoking and counselling.

For more information on how to increase your physical activity, or for advice on stopping smoking, visit nhs.uk/livewell.

I try and take each day as it comes. I have learnt that I need to take it easy sometimes, but it hasn’t stopped me doing the things I enjoy. I like running, so I get out for a run when I feel up to it.

Andy, age 36
Diagnosed with Ulcerative Colitis in 2007

Diet may also play a part in causing Crohn's or Colitis fatigue, especially if you aren’t receiving the amounts of calories and nutrients that are right for you.

There are many foods that may help alleviate various deficiencies, including vitamin B12, iron, folate and vitamin D, which is also synthesised in the skin during exposure to sunlight. Your doctor, IBD team or dietician can offer advice. For information on nutritional supplements such as iron, folic acid (a synthetic form of folate), vitamin B12 and others, you may want to read our information sheet Other Treatments for IBD.

Some people have found that taking other supplements, such as omega-3 oils (found naturally in oily fish and some other foods) improves their fatigue. However, there is little scientific evidence to support this. Check with your IBD team before taking any supplements or making major changes in your diet.

Some people find that during a flare-up they cannot tolerate certain foods. During remission, you should try to eat as balanced and healthy a diet as possible. Foods containing carbohydrates are a major source of energy. There are two types of carbohydrate – simple and complex. Foods containing complex carbohydrates (such as cereals or porridge) can provide you with longer-term energy. Foods containing simple carbohydrates (such as sugary sweets, cakes and biscuits) provide quick bursts of energy, but this energy only lasts a short time.

Although there is currently little scientific evidence, some people find that following a gluten-free diet reduces their fatigue.

Eating smaller meals and healthy snacks more frequently, rather than larger meals less often, may help you keep your energy levels up throughout the day. You could try eating every three to four hours to see if this helps your fatigue.

For more information about how to manage a healthy diet, see our booklet Food and IBD.

There are a variety of other ways in which people with Crohn's or Colitis help themselves manage fatigue, for example:

• Frequent breaks and rest
• Good-quality sleep
• Complementary and alternative therapies such as mindfulness, acupuncture, yoga or homeopathy
• Physiotherapy and exercise
• Flexible working hours
• Planning ahead
• Reducing stress

Two further points to remember are to prioritise the demands on you, and to pace yourself.
 
What works for some people may not work for others. Learning more about your body, and what may trigger your fatigue, can be helpful.

Talk to your doctor or nurse about your fatigue, and explore methods that might help you, rather than simply accepting it and missing out on support that is available. There are many methods – from resting to exercising – that you can try yourself to discover what works for you. If you need further help, your healthcare team may also be able to refer you to other services such as counselling or specialist chronic fatigue services.

I would have a rest in the morning and a rest in the afternoon. And that was how I got through the day.

Fatigue in IBD study participant

We offer more than 50 publications on many aspects of Crohn’s Disease, Ulcerative Colitis and other forms of Inflammatory Bowel Disease. You may be interested in our comprehensive booklets on each disease, as well as the following publications:

Living With Crohn's or Colitis
Taking Medicines
Managing Bowel Incontinence
Living With a Stoma

Health professionals can order some publications in bulk by using our online ordering system. If you would like a printed copy of a booklet or information sheet, please contact our helpline.

Our helpline is a confidential service providing information and support to anyone affected by Crohn's or Colitis. Our team can:
• help you understand more about Crohn's or Colitis, diagnosis and treatment options
• provide information to help you to live well with your condition
• help you understand and access disability benefits
• be there to listen if you need someone to talk to
• put you in touch with a trained support volunteer who has a personal experience of Crohn's or Colitis

Call us on 0300 222 5700 
Email helpline@crohnsandcolitis.org.uk
Use our LiveChat 

Crohn’s & Colitis UK Forum
This closed-group community on Facebook is for everyone affected by Crohn's or Colitis. You can share your experiences and receive support from others.

Crohn’s & Colitis UK Patient Panels
IBD Patient Panels, which are supported by Crohn’s & Colitis UK, are groups of people with Crohn's or Colitis who use their perspective as a patient to work with their IBD healthcare team to help improve their hospital services. For more information on patient panels, please read our information leaflet or contact our Patient Engagement Team.

Crohn’s & Colitis UK Local Networks
Our Local Networks of volunteers across the UK organise events and provide opportunities to get to know other people in an informal setting, as well as to get involved with educational, awareness-raising and fundraising activities. You may find just being with other people and realising that you are not alone can be reassuring. Families and relatives may also find it useful to meet other people with Crohn's or Colitis. All events are open to members of Crohn’s & Colitis UK

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Last reviewed: December 2017