Disclaimer: This information is based on my own research into this particular aspect of IBD as well as some personal experience and should not be used as medical advice or a diagnostic tool. The suggestions given within are taken from sources laid out in the references header.  If you seek advice regarding the things you experience within your own disease, please contact your IBD team for medical advice

A typical conversation between myself and some colleagues usually discusses how tired we are. I tend to agree, because I am yawning and needing all the caffeine to get me through the day of work ahead. But, more often than not, it is more than that: I am fatigued. And yes, this is different to just “being tired“; it is something that is not ‘cured’ by sleep or resting. Whilst those two things can help, my fatigue is an inherent part of my disease.

But what exactly is fatigue?

Fatigue is defined as “extreme tiredness resulting from mental or physical exertion or illness.

Fatigue is associated with many medical conditions as part of the condition itself or the treatment used to combat its other symptoms. This ranges from cancers, acute organ disease, COPD, Fibromyalgia, anaemia, heart disease to stress, depression and grief. Fatigue occurs in a high proportion of chronic illnesses – those that are persistent or otherwise long-lasting in its effects – or in conditions which have a trigger. It comes on suddenly and swiftly or it is a slow burn and usually not seen until it requires long-term treatment.

And whilst these other conditions have their important, here I will be discussing fatigue with regards to Inflammatory Bowel Disease – Ulcerative Colitis and Crohn’s disease – because I am specifically share my own experience and knowledge.

Why do IBD patients suffer from fatigue?

It may simply be caused by the body’s response to inflammation in the colon – 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.

The malabsorption of nutrients – nutritional and vitamin deficiencies are common in people with IBD, as they can be caused by diarrhoea, a loss of appetite or poor absorption through the inflamed gut wall.

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

Anaemia, a common complication of IBD, may worsen fatigue. Those with anaemia carry less oxygen in their blood, which can mean they easily become exhausted.  In people with IBD, anaemia can occur due to poor absorption of iron in the gut,  by loss of blood from the inflamed wall of the gut, or by deficiencies in vitamins B12 and/or folate.

Certain medications – Steroids and drugs that alter the immune system – including Azathioprine, Mercaptopurine and Methotrexate – have been linked to fatigue in some people.

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

Pain –  pain is a common symptom for people with IBD and can be caused by a number of factors; including inflammation, blockages and bloating in the gut, along with pain caused by extra intestinal manifestations of IBD such as arthritis. Pain can sometimes remain during periods of remission, and dealing with this can be draining.

Emotional stress/psychological disorders – Anxiety, depression and stress are consistently associated with fatigue in people with IBD – however it is not clear whether anxiety, depression or stress cause fatigue, or are a result of fatigue.

How does it present itself?

Fatigue is a very non-specific symptom of many diseases and disorders. So it present as tiredness, beyond which can be solved with quality sleep.

A more accurate question is how does fatigue feel? 

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. And for those with IBD, fatigue can feel physical – a lack of energy or strength -, mental  – a lack of motivation, concentration or alertness –  or a combination of the two.

Despite just feeling that you can also experience the following:

  • Feeling like you have no energy
  • Sleeping more than normal
  • Not wanting to or not being able to do normal activities
  • Paying less attention to how you look
  • Feeling tired even after sleeping
  • Trouble thinking or concentrating
  • Trouble finding words and speaking

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’. It is helpful to appreciate that fatigue presents differently in each person who experiences it.

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

However, there doesn’t seem to be a major difference in the levels of fatigue between those with Ulcerative Colitis and those with Crohns. Although some research suggests that fatigue may be more common in women, and may be worse in people with Crohns.

For many they find that their fatigue improves as their IBD improves, but 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 IBD symptoms are under control. Fatigue continues to affect two in every five people whose IBD is in remission.

How can we help with fatigue?

Ensuring that fatigue doesn’t interfere with the quality of life, the ability to work, and the capacity to have a normal social life is central. This is usually one of several goals when treating a chronic condition like IBD. Determining what is the strongest cause for your fatigue is important as we can’t ultimately ‘cure’ fatigue but we can lessen the effect it has by learning what to do when it hits and how to combat it going forward.

The key to easing fatigue is not to ignore it. “Fatigue is a sign that something requires attention

  • Get your condition in check – fatigue usually is associated with active disease, so finding a treatment which lessens your IBD symptoms should help reduce the impact of fatigue.
  • Rule out other causes of fatigue –  finding out other reasons why you’re fatigued if your condition is controlled is important. This could be anaemia, arthritis or vitamin deficiencies. It is important to have these checked.
  • Move more –  It might be counterintuitive, but exercise has been proven to have a positive affect on fatigue. Being active every day is a small step towards this goal, even if it’s a short walk.
  • Try to get eight hours of sleep – More and more research is proving that inadequate sleep can have a negative effect on health. The recommendation is 7-9 hours of sleep per night for adults, which can be tough for those who experience joint pain, diarrhea and abdominal pain; symptoms of IBD and its extra intestinal manifestations. Improving your sleep can be the least invasive way to improve fatigue.
  • Eat your vitamins – Eating well can help too – a diet which is healthy and balanced with fats, carbohydrates and protein will help with overall health, hopefully having a positive effect on fatigue in the long run. Whilst this can be tricky with IBD due to some restrictions, balance is key here.
  • Plan ahead – It’s helpful to rest ahead of big events, if they are planned in. Giving your body time to rest up and prepare for this, can help with fatigue. Knowing where you can rest in your schedule can also help.
  • Rethink 9-5 – Sometimes, its necessary to consider changes to your working day. If you find that fatigue affects your ability to work, it can be helpful to discuss options with your employer.
  • Try to reduce stress – Practicing relaxation techniques can have a benefit when you feel stress coming on. If stress is your fatigue trigger, this is very beneficial.
  • Learn your fatigue triggers – Everyone’s different, so try to figure out which habits wear you out and which tend to put a little pep in your step, and act on them accordingly. Manage your life in a way that works for you, and if that means you work out in the morning and go to bed early in the evening, then that is just the way you need to do it.

My experience

I experience fatigue most when my condition is in remission. Probably because it’s more visible, not hidden with my flare up medications and lack of sleep due to being symptomatic. And I definitely feel that whilst in stable and living with an ostomy.

For the first couple of month post op, I was getting into my routine of recovery but once I returned to work and my medication plateau out, I was able to see that my lack of colon and terminal ileum, meant that my deficiency with Vitamin D and B12 held tight to my energy levels. When we sorted those out, I was able to see a pattern of my fatigue – its ebb and flow.

So my Vitamin B12 is boosted with ten-weekly injections and I am on daily high dose Vitamin D. As well as my Vedolizumab, my fatigue should be controlled. However, I do experience that zombie feeling, the brain fog and the general lack of motivation and energy that is associated with fatigue. Some of mine is linked to my antidepressants I take and I find napping with relaxing music helpful as well as movement. I tend to bake when I fatigue – I can do this without needing to follow a recipe and it is really relaxing to me too.

When my fatigue is bad, I know I need to break away from my routine and rest. This means sleeping in, staying hydrated and switching my brain off to all the things that need doing. These days, I’ve accounted some rest periods in my routine, I’ve adapted my work pattern with my employer and it is helpful but its hard to adjust to, so quickly.

I’m sure it will keep improving but being aware of my fatigue has helped more than anything. Know that I should break away and rest, not keep going, has helped with my anxiety, my use of painkillers and my generall attitude.

My three top tips are:

  • Try to reduce fatigue by doing something you love or that you find relaxing – it can be anything; from simple breathing exercises to talking it all out.
  • Tell your GP / consultant about your fatigue. You don’t need to sit and suffer.
  • Keep a record of how you feel each day – I have this in my bullet journal and I track my habits too; like medication, hydration, GI symptoms, extra intestinal ones and my fatigue too. It’s beginning to build a great picture of patterns.

Do you experience fatigue with your chronic illness? How do you combat it? Have you gotten better as sussing it out?

Do you have any questions or queries? Or just want to share your own experiences? Leave me a reply or tweet me @sapphire20 or find my blog page on Facebook!

Sources:

Mayo Clinic – Fatigue

Everyday Health – Beyond Tired: Is Your Ulcerative Colitis Causing Fatigue?

Inflammatoryboweldisease.net – Tired vs IBD Tired

Crohns and Colitis UK – Fatigue and IBD

Crohns and Colitis UK – Fatigue In IBD Study and the IBD Fatigue Test

NHS – Self help Tips to Fight Tiredness

American Cancer Society – How to Handle Fatigue

Verywellhealth.com – The Reasons Why IBD Causes Fatigue

Everyday Health – How to Manage Fatigue When You have Crohns Disease