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:
Physical Activities
The low energy levels caused by fatigue can make it very hard to take part in physical activities such as sport. Some people find that they do not even 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 can be too much.
Memory and concentration
Some people find that fatigue can make 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 the ‘brain fog’.
Social Activities
Unpredictable fatigue can make it very difficult to take part in social activities. This may mean that you find it difficult to go on holiday, travel, socialise, or even take part in hobbies or interests.
Emotions
Fatigue can have an effect on your emotions. If you cannot do as much as you would like, you may feel frustrated and angry. Some people may feel isolated and lonely if they find it difficult to get out and socialise with friends. This can lead to depression and low confidence.
Relationships
Some people find that fatigue has a negative effect on their relationships with friends and family. For example, some people may feel that, because their condition cannot be seen, their family does not 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 together. Talking about this may be helpful in this sort of situation.
Work and education
Fatigue can have a direct effect on employment and education. Whereas some people with IBD fatigue may be able to manage a full time job, others may struggle with such a commitment. Some experience fatigue so badly that they have to give up work. Working part time or reducing the number of hours worked can sometimes help manage fatigue. However, this can have major financial implications. Students with fatigue may find studying difficult, and may worry that their fatigue has limited their achievements and job aspirations.
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 Main symptoms of IBD are frequent diarrhoea, abdominal pain, poor appetite, weight loss, fever and continual tiredness. Typically, people experience times when the disease is very active (“flare-ups”) and times when it is relatively quiet (“remission”).
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
- Alternative therapies such as acupuncture, yoga or homeopathy
- Physiotherapy and exercise
- Flexible working hours
- Planning ahead and reducing stress
However, also remember that everybody is different, so what works for some people may not work for others.
You can also ask your doctor or IBD nurse to check that you do not have active IBD. This could be done by a blood test or stool test. If your IBD is active, then it needs treating to see if the fatigue improves as your IBD improves. This may mean changing the dose or type of medicine that you are on.
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. If you are iron deficient, your doctor may prescribe iron supplements.
Some of the drugs used to treat IBD can cause fatigue in some people. Your doctor or IBD nurse may be able to adjust the dose or find a possible alternative medicine.
In summary, learning more about your body, and what may trigger your fatigue can be helpful. Another key point to remember is to prioritise your time. It is particularly important to pace yourself.
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.
Exercise
Studies in other conditions, such as cancer, have shown that exercise has been found to help reduce fatigue. It is possible that this may help IBD fatigue. You could try gradually increasing the amount of physical exercise that 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 gym sessions/ classes. It is important to get the balance right between doing too much and exhausting yourself, and not doing enough to make a difference.
Diet
Diet may also play a part in causing IBD fatigue, especially if you are not receiving the correct amount of calories and nutrients. It is important to aim for a balanced nutritious diet, if possible. Some people find that during a flare-up they cannot tolerate certain foods. However, during remission it is important to try and eat as balanced and healthy a diet as possible. For more information about this, see our booklet Food and IBD.
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 short-term bursts of energy.
There is some evidence that foods rich in omega 3 natural oils (such as oily fish) may help fatigue in other conditions. Some people have found vitamin and mineral supplements to be helpful. Check with your IBD team before taking any supplements.
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.
One of the key difficulties with fatigue is that it can be difficult to discuss and explain it as a problem. This can mean that you may find it difficult to talk to your doctor about your fatigue, and therefore may miss out on receiving help.
Some doctors and nurses are not aware how much fatigue can affect people with IBD, so may not ask about it during an appointment. If you do suffer from fatigue, you should make sure you do tell your IBD team.
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.
Further Information
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.
1. Fatigue and Cancer
Macmillan
Cancer Help
2. Fatigue and Multiple Sclerosis
MS Society
3. Fatigue and Arthritis
Arthiritis
4. Fatigue and Parkinson’s Disease
Parkinson’s Info
Help and Support from Crohn’s and Colitis UK
You can contact the Crohn’s and Colitis UK Information Line: 0845 130 2233:
Open Monday to Friday, 10 am to 1 pm, excluding English bank holidays. An answer phone and call back service operates outside these hours. You can also email us at info@crohnsandcolitis.org.uk Trained Information Officers provide callers with clear and balanced information on a wide range of issues relating to IBD.
