How does it feel and what affect can IBD have on your life?
We found that fatigue can have an effect on all aspects of life. Some people find it difficult to function at all when their IBD is active, both because of bowel symptoms but also fatigue.
Fatigue can have an effect on all aspects of life. Some people find it difficult to function at all when their IBD is active, both because of bowel symptoms, and also fatigue. Research and surveys suggest that fatigue may affect the lives of people with IBD in many different ways:
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’.
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.
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.
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.
What can I do to improve my symptoms?
People in our study reported a number of different ways that they managed their fatigue. We look at some of the methods others are using to help reduce their 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 IBD. This might be done with a blood test or stool test. If your IBD is active, then you will need treatment to see whether your fatigue improves as your IBD 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 IBD 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 IBD – 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 sheet Counselling and IBD.
If you smoke, stopping smoking can also help to reduce IBD 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 care team. There are a number of options that may help with pain in IBD, 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 www.nhs.uk/livewell.
Recent research has found that some people do find ways to help them manage their fatigue. Examples of things which people with IBD have found useful to reduce their fatigue include:
- 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 and 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.
How do you define ‘fatigue’?
Our findings highlight a lack of clarity in the terms used and a lack of consistency on the definition of IBD- fatigue. It has been described as ‘fatigue’, ‘tiredness’, ‘reduced energy’ or ‘declined vitality and vigour’.
Fatigue can be described as an overwhelming sense of continuing tiredness, lack of energy, or feeling of exhaustion, which is not relieved after rest or sleep. It is far more than the ordinary and usual tiredness that anyone feels after they have done a lot of physical or mental activity.
Fatigue can be very unpredictable, vary day-to-day, or even hour-by-hour. It can come on very suddenly with no warning. People sometimes describe this feeling as like ‘hitting a brick wall’.
Do diet and exercise have a part to play?
As part of our research we looked at whether exercise and diet could play a role in reducing fatigue in IBD.
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 booklet Living with IBD for tips on exercising with IBD.
Diet may also play a part in causing IBD 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.
How well known is fatigue in IBD amongst health care professionals?
We talked to various IBD healthcare professionals to assess the level of awareness and knowledge of fatigue in IBD.
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.
Some doctors and nurses are not aware how much fatigue can affect people with IBD, 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.
During the our study, people with IBD 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 health care team.
How can I measure my level of fatigue?
Our research tells us that there is a need for a way of measuring fatigue to enable people with IBD to discuss fatigue with their health care professionals. We have developed a Fatigue Scale to do this.
We have developed a new IBD Fatigue Scale that can measure the severity and impact of fatigue on people with IBD. It takes the form of a questionnaire. Click here to take the test
If you find it difficult to talk about fatigue, you may find it helpful to print the questionnaire off and show it to your health care team.
You may like to visit some of the other information sources developed for other health conditions. Some information may have some cross-over benefit to people living with IBD-related fatigue.
You may like to visit some of the other information sources developed for other health conditions. Not all of this information will be relevant, but some information may have some cross-over benefit to people living with IBD-related fatigue.
2. Fatigue and Multiple Sclerosis
3. Fatigue and Arthritis
4. Fatigue and Parkinson’s Disease
Crohn’s and Colitis UK Information Line: 0300 222 5700:
Open Monday, Tuesday, Wednesday and Friday, 9 am to 5 pm, and Thursday 9am to 1pm, excluding English bank holidays. An answer phone and call back service operates outside these hours. You can also email us at firstname.lastname@example.org Trained Information Officers provide callers with clear and balanced information on a wide range of issues relating to IBD.