What is fatigue?
Fatigue is an overwhelming sense of ongoing tiredness, lack of energy, or feeling of exhaustion that doesn’t get better after rest or sleep. It is more than just the tiredness people may feel after doing a lot of physical or mental activity.
When people with IBD experience fatigue, they may feel a lack of energy or strength in their body. Fatigue can also affect motivation and concentration, and there will seem to be no reason to feel this way. The unpredictable nature of fatigue in IBD is part of the reason why it is so hard to manage.
How does IBD cause fatigue?
- There are many reasons why people with IBD may experience fatigue but symptoms and medication are the main causes.
- Fatigue can affect people who are having a flare-up or are in remission (little to no symptoms).
- Inflammation in the gut caused by IBD can affect both the brain and your nutrition, leading to fatigue.
Fatigue is a common complication for people with Crohn’s and Colitis. Over three-quarters of people experience fatigue during a flare-up of their disease and half experience fatigue while in remission (little to no symptoms). It is still not known why fatigue continues to affect people in remission.
There are a number of potential causes of fatigue in IBD and sometimes a combination may be contributing to low energy levels.
Inflammation – when the disease has a flare-up, the inflamed gut may influence the brain, reducing motivation, appetite and energy.
Pain – inflammation of the gut or in other parts of the body, like arthritis, can be painful. Pain can also be caused by blockages in the bowel which will need to be treated by a doctor. Pain can also be caused by constipation. Managing pain can be exhausting and can contribute to fatigue by making it hard to sleep well, do physical activity and causing psychological distress.
Learn more about Complications and IBD.
Nutrition – it can be hard for the body to absorb nutrients when the gut is inflamed which can lead to low nutrition and fatigue:
- Iron: Anaemia is a common complication of IBD. When the body doesn’t absorb enough iron, blood cells will struggle to carry enough oxygen around the body which leads to tiredness. Loss of blood from IBD symptoms can reduce the number of red blood cells which also causes fatigue.
- Vitamin B12 (folate): Low levels of folate can reduce the number of red blood cells, contributing to fatigue.
- Vitamin D: It is possible that low vitamin D also contributes to fatigue. Vitamin D is involved in many areas of the body like bone health, muscle health and the immune system.
Psychological distress: People with IBD often experience anxiety, depression and stress caused by their condition. Psychological health and fatigue have been linked together but it is not known if emotional stress causes fatigue or the other way around.
Medication: Steroids and other medications that affect the immune system, like methotrexate and azathioprine, can cause fatigue in some people.
Sleep: Pain and having to use the toilet multiple times during the night can affect sleep quality.
How can I manage fatigue?
- Speaking about fatigue with your doctor may help you find the reason/s for your fatigue and ways to manage it even if it isn’t caused by IBD.
- If you think your medication is contributing to your fatigue, it is important to not stop taking the medication and risking a flare-up. Talk with your doctor first.
- Exercising when you’re up for it may reduce fatigue caused by IBD.
- Rest when you need to and put your health first.
Because there are so many reasons why you may be feeling fatigued, your first step should be talking with your doctor. They can check to see if your disease is active and if you have any nutrition deficiencies. They can also find a different medication if you think you’re experiencing fatigue as a side effect of your current medication.
There is also some evidence that light physical activity may reduce fatigue caused by IBD. Learn more about Exercise and IBD.
If ongoing pain or emotional stress is contributing to your fatigue, you can also discuss this with your healthcare team for strategies on how to manage it. You can also try calling our helpline for extra support.
The most important thing to remember is to listen to your body and rest when you need to. It may mean making changes to your lifestyle – what you eat, how you exercise and how you work. But learning to prioritise your health is crucial when managing a long-term condition like IBD.
How can fatigue affect people with IBD?
- When experiencing IBD fatigue, even simple everyday tasks can be hard to do.
- Fatigue can interfere with your relationships and social life. Speaking openly about your condition can make it easier for you and those you care about.
- Work and school life can be harder if you’re experiencing IBD fatigue and you may need to make some changes.
Being too tired to do anything means that every part of your life can be affected. Even normal everyday tasks may take greater effort.
Each person will have a different experience of fatigue but there are some common areas of life that can be affected.
Physical activity – Participating in sport may be very hard for those experiencing fatigue but some people will find it hard to do housework, drive or even move around the house.
Concentration – Thinking and focusing can become difficult when experiencing fatigue. You may even start to stumble over your words.
Social life – Because fatigue can come on without warning, it can be hard to make plans to see friends, travel or maintain your hobbies and interests.
Relationships – It can be hard to explain IBD fatigue to friends and family, and their lack of understanding can affect your relationships negatively. Not being able to contribute fully can also make you feel guilty towards them when they have to do extra work.
Work and education – Depending on your experience with fatigue you may or may not be able to manage a full-time job. Some people may even have to give up on work entirely. Students affected by IBD fatigue may also find it difficult to manage their studies and stick to deadlines. If this is the case for you, you should try and work with your school or university for extra support.
Explaining your fatigue
- Fatigue in IBD is hard to understand for people who have never experienced it before.
- All symptoms of IBD that you are worried about should be discussed with your doctor and fatigue is no exception.
- Friends and family often do not understand the difference between normal tiredness and exhaustion caused by IBD.
- The ‘Spoon Theory’ is a common way of explaining the exhaustion of managing a chronic condition.
Talking with your healthcare team
Not every doctor and nurse will be aware of how serious fatigue can be for people with IBD. It may be hard to get them to understand that it is affecting your quality of life and that you need help managing it. Don’t let anyone dismiss how you are feeling and lose your chance of getting help.
If you’re looking for words that can describe how you are experiencing fatigue, try using ‘overwhelming tiredness’, ‘brain fog’ or ‘completely wiped out’.
Fatigue is a symptom of IBD and should be treated like any other symptom that needs to be managed.
Talking with friends and family
Finding a way to explain a chronic illness to friends and family, especially an ‘invisible’ one, can be a frustrating process. From the outside, you can look perfectly healthy as you get on with your daily tasks, or be laughing along with everyone else. But inside, you might have the feeling of a thousand tiny knives stabbing away at you, or be mentally keeping a tally of any public bathroom you see.
For people with IBD there is another level of thought that has to happen as you consider what your body is capable of that day.
Spoon Theory and IBD
Christine Miserando, an American writer and Lupus patient advocate, found a unique way of explaining just what it felt like to have a chronic illness to someone who may never have experienced it – spoons.
Faced with a friend asking what it was like to live with Lupus, Christine started explaining the aches, pains and other symptoms she dealt with on a daily basis. But she soon realised just explaining was not enough; her friend needed to experience it.
“How do I explain every detail of every day being affected, and give the emotions a sick person goes through with clarity? I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand?
“At that moment the spoon theory was born. I quickly grabbed every spoon on the table; hell, I grabbed spoons off of the other tables. I looked at her in the eyes and said “here you go, you have Lupus.”
The spoon theory, which you can watch in full here, uses a handful of spoons to explain how every action taken by someone facing a chronic illness represents a ‘spoon’. While a healthy person may have an unlimited number of spoons, the chronically ill only get a certain number of spoons per day, and once they are all gone then that’s it – no more spoons (or energy) for the rest of the day.
“I asked her to list off the tasks of her day, including the most simple. As she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon.”
Some days you might have more spoons than others and be able to achieve more. But on others you might have to borrow tomorrow’s spoons, knowing that you’ll be left with less for the next day. You might have to choose between making dinner and getting the household chores done, or between seeing a friend and making it to an evening class.
“It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count spoons.”
Figuring out what you want to spend your spoons on means sufferers of chronic illness are all too aware of the importance of time. IBD sufferers try to make the most of every opportunity because spoons are precious.
Christine told her friend she had learnt to always keep one spoon in reserve for when she really needs it. When she chooses to spend that spoon on someone, they know she really values them because spoons are not that easy to come across.