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What You Should Know About IBD-Related Fatigue Part 1

Fatigue is prevalent among people who have been diagnosed with Inflammatory Bowel Disease and can significantly affect their quality of life. 

I once wrote a post about the exhaustion I was feeling after having gone through some blood transfusions, a couple surgeries, a year on steroids, malnutrition, and so on. Naturally fatigue was to be expected but what happens when people who have IBD still experience debilitating fatigue even while their disease is well-controlled?

Fatigue is frustrating because it is difficult to measure and can be a challenge to treat. Many people living with Inflammatory Bowel Disease declare that they still experience daily fatigue even in remission and that it poorly affects their quality of life. What seems like one of the most common symptoms of Crohn’s disease and ulcerative colitis can often feel like one of the most neglected. Is there a way of measuring IBD-related fatigue and anything that can be done to treat it?

WHAT IS IBD-RELATED FATIGUE? 

The fatigue that comes with having Crohn’s disease or ulcerative colitis is referred to as IBD-related fatigue. This fatigue is so common that over three quarters of patients with Inflammatory Bowel Disease experience it when disease is active (2) and patients who have IBD are 3x more likely to have fatigue compared to healthy controls (4) .

Fatigue feels different than being tired. Most people experience feeling tired from time-to-time and it is usually resolved with taking  a nap, getting more sleep at night, or simple lifestyle changes. 

Fatigue differs from being tired in that it is long-lasting and can’t be resolved with getting physical and mental rest alone. Patients who experience fatigue sometimes describe it as a feeling of complete and utter exhaustion. Others would describe it as feeling weak, worn out, heavy, or drained. When a patient has fatigue they usually have difficulty having enough energy to last the entire day. Going to work or to school can completely exhaust someone with fatigue and they may not feel capable of doing anything beyond that for the rest of the day (8). 

Many people living with Inflammatory Bowel Disease declare that they still experience daily fatigue even in remission and that it poorly affects their quality of life. What seems like one of the most common symptoms of Crohn’s disease and ulcerative colitis can often feel like one of the most neglected.

IBD-related fatigue can negatively impact a patient’s quality of life affecting mood, employment, daily routines, self-care, recreation, relationships, and sense of self. Some may feel too tired to eat, walk to the bathroom, or even use the TV remote. It can be difficult to think or move your body.

Rest does not make fatigue go away and just a little activity may exhaust you. In addition fatigue can make a person feel isolated because it’s often difficult to explain to others who may not understand why you so often cancel plans or are unable to do the things expected of you. Most people understand being tired and know that it’s remedied with extra rest but if a person hasn’t experienced fatigue they may not understand why you can’t just get more sleep and feel better. 

WHAT WE KNOW ABOUT IBD-RELATED FATIGUE  

Though there is much to learn about the pathogenesis of IBD-related fatigue we do know some of its causes and clinicians are working on better ways of measuring and treating it. One thing known about IBD-related fatigue is that it increases with active inflammation in the gut (6, 7, 8) and usually decreases when inflammation goes away. However, 2 out of 5 patients still experience fatigue even while in remission (2). 

IBD-related fatigue is usually the bodies response to inflammation and illness but can also be caused by: 

  • Anemia: Anemia is a condition where you don’t have sufficient healthy red blood cells to carry enough oxygen to the rest of your body. Iron deficiency is the most common cause of anemia in IBD but anemia can result from other deficiencies, blood loss, the effects of proinflammatory cytokines, drug therapies, and some other things (5). The development of anemia is complex with many factors that contribute to it. It is important for doctors to distinguish between iron deficiency anemia, anemia caused by chronic disease, or mixed anemia in order to know how best to treat it.
  • Steroids: If you’ve been on them you probably don’t need an explanation. Steroids can be responsible for feeling very awake, almost manic-like, and causing lack of sleep which can lead to fatigue.
  • Other medications: Medications may cause drowsiness, insomnia, nausea, or fatigue. Fatigue is a possible side-effect of nearly every medication used to treat Crohn’s disease and ulcerative colitis and is usually associated with immunomodulators (6MP and Imuran) in particular (7). 
  • Nutrient Deficiencies and Dehydration: Inflammation, malabsorption, poor appetite, and bowel surgeries put IBD patients at risk for nutritional deficiencies and dehydration that can cause fatigue.
  • Weight loss: Rapid weight loss in IBD usually occurs when a patient is not properly absorbing nutrients or is too sick/in too much pain to eat enough to maintain a healthy weight and these things can lead to fatigue. 
  • Arthritis and arthralgia: Come with their own fatiguing symptoms.
  • Depression and/or anxiety: People who have Crohn’s disease and ulcerative colitis are at an increased risk for depression, stress, and anxiety which may cause fatigue. IBD patients are 3x more likely to have depression compared with the general population (8). 
  • Interrupted Sleep: Night sweats, pain, needing to empty an ostomy bag, frequent trips to the bathroom, etc., can contribute to interrupted sleep that can lead to fatigue. 
  • Pain: Pain is another thing that can cause fatigue. A study in Norway linked chronic fatigue to increased pain intensity and other interferences (4). 
  • Deconditioning related to illness: IBD-related fatigue is associated with impaired muscle strength and a lower physical activity level (7, 8).  IBD patients showed impaired muscle strength when compared to healthy controls.
  • Other: Alcohol and drug use and comorbidities such as diseases that affect other organs (6, 8) can lead to fatigue. 

IBD-related fatigue can negatively impact a patients quality of life affecting mood, employment, daily routines, self-care, recreation, relationships, and sense of self.

Knowing that the things listed above contribute to IBD-related fatigue can be a starting point as for how to treat it. For instance a patient with interrupted sleep might benefit from cognitive behavioral therapy. A patient with active inflammation would benefit from a better treatment plan and a patient with iron deficiency anemia might see improvement of fatigue after some iron infusions. Several of the causes of fatigue listed above are treatable which is why it is important for doctors to be screening for fatigue at every appointment and looking into common causes. When IBD is well-controlled and the above contributors are addressed fatigue usually lessens (7). 

WHAT WE DON'T KNOW ABOUT IBD-RELATED FATIGUE  

Information on the development of IBD-related fatigue and how to measure and treat it is lacking. One difficulty in treating IBD-related fatigue is that half of the patients who are in both clinical and endoscopic remission still experience fatigue and doctors are not exactly sure why that is (6). 

There is still much to be learned about IBD-related fatigue. Why does fatigue persist even when disease activity is well-controlled? Which patients are more prone to IBD-related fatigue? What are the underlying mechanisms of development? Are there predictors of severe fatigue and how to design effective treatment algorithms for fatigued IBD patients. Currently there is no consensus on standard care for IBD-related fatigue especially regarding screening and management which is non-existent (6).

Sara

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1. Cohen, B. L., Zoëga, H., Shah, S. A., Leleiko, N., Lidofsky, S., Bright, R., … Sands, B. E. (2014). Fatigue is highly associated with poor health-related quality of life, disability and depression in newly-diagnosed patients with inflammatory bowel disease, independent of disease activity. Alimentary Pharmacology & Therapeutics Aliment Pharmacol Ther, 39(8), 811-822. Retrieved February 15, 2016, from http://onlinelibrary.wiley.com/doi/10.1111/apt.12659/full 

2.  Fatigue and IBD [PDF]. (2014, June). Crohn’s & Colitis UK. 

3.  Romberg-Camps, M. J., Bol, Y., Dagnelie, P. C., Kruijs, M. A., Kester, A. D., Engels, L. G., … Stockbrügger, R. W. (2010). Fatigue and health-related quality of life in inflammatory bowel disease. Inflammatory Bowel Diseases, 16(12), 2137-2147. Retrieved February 15, 2016, from http://www.ncbi.nlm.nih.gov/pubmed/20848468

4.  Fitzpatrick, C. (2015, December 11). Fatigue Leads to Increased Pain Intensity in IBD. Retrieved February 22, 2016, from http://www.hcplive.com/conference-coverage/aibd-2015/fatigue-leads-to-increased-pain-intensity-in-ibd

5. Guagnozzi, D. (2014). Anemia in inflammatory bowel disease: A neglected issue with relevant effects. World Journal of Gastroenterology WJG, 20(13), 3542. Retrieved January 25, 2016, from Anemia in inflammatory bowel disease: A neglected issue with relevant effects. 

6.  Kreijne, J. E., Lie, M. R., Vogelaar, L., & Woude, C. J. (2015). Practical Guideline for Fatigue Management in Inflammatory Bowel Disease. ECCOJC Journal of Crohn’s and Colitis, 10(1), 105-111. Retrieved February 13, 2016, from Practical Guideline for Fatigue Management in Inflammatory Bowel Disease.

7.  Leighton, J., MD. (2014, August 25). Mayo Clinic: Fatigue is a common problem for those with Crohn’s disease. Retrieved February 1, 2016, from http://www.postbulletin.com/life/lifestyles/mayo-clinic-fatigue-is-a-common-problem-for-those-with/article_86831784-2b9a-5d9e-a7ef-8642882239df.html

8.  Higgins, P., MD, PhD, MSc. (2016, February 14). IBD School 204 Part 1: Fatigue. Retrieved March 22, 2016, from https://www.youtube.com/watch?v=Xa_NJG1AUbk

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