Tired of Being Tired: Managing Fatigue and Sleep with IBD. Today s Talk: What is Fatigue? 4/21/15

Transcription

1 Tired of Being Tired: Managing Fatigue and Sleep with IBD Crohn s & Colitis Foundation of America Northern California Chapter Patient and Family Education Symposium, Palo Alto, CA April 19, 2015 Bayla Travis, Psy.D. drbaylatravis@gmail.com Today s Talk: What do we know about IBD, fatigue and sleep? What can we do to manage fatigue and sleep problems? Discussion: what has worked for you? What is Fatigue? Fatigue can be described as an overwhelming sense of continuing tiredness which is not relieved after rest or sleep. On very bad days, even walking from one room to another can be too much. Fatigue can be very unpredictable, it can come on very suddenly with no warning. People sometimes describe this feeling as like hitting a brick wall. Memory and concentration may be affected, which can affect speech. Some people call this the brain fog. 1

2 Fatigue is considered as problematic as diarrhea and abdominal pain. (Drossman et. al. 1989) In a study from 2010, energy level was ranked as a bigger concern than bowel control (Stjernman et. al., 2010) How prevalent is fatigue? Recent studies confirm fatigue prevalence in IBD, both in remission( 22 41%) and in moderate to active disease (44 86%), with data derived from a total of 6165 IBD patients. The IBD-fatigue prevalence rates are comparable with rates of fatigue in other chronic conditions, such as cancer, multiple sclerosis and rheumatoid arthritis. Fatigue in IBD has not received the same amount of attention in research and clinical practice as fatigue in other conditions. (Czuber-Dochan et. al., 2013) Fatigue increases over time regardless of disease pattern (active, in remission or mixed). (Graff et. al., 2013) In a study that showed that 66% of patients reported fatigue as a daily concern, only 36% of physicians and 44% of close relations were in agreement in terms of the patient s fatigue and the effort needed to maintain their daily activities. (Lesage et. al., 2011) 2

3 How prevalent is poor sleep quality? Adults in the general population have poor sleep quality= 32%, active IBD=72-82%, inactive IBD 47-51% Fatigue was related to poor sleep quality (but not hours of sleep) and perceived stress. There was a four times greater likelihood of significant fatigue with elevated stress. (Graff et. al., 2011) How are sleep problems, fatigue and IBD related? The science between sleep disturbances and inflammatory conditions is complex and not completely understood. Recent studies have shown that the sleep-wake cycle, also known as the circadian rhythm, is controlled by a central clock in the brain as well as peripheral GI clocks. Different environmental factors, such as light, food, chemicals, and genes, modulate the functions of these clocks. (Konturek, et. al. 2011) Altering circadian rhythm significantly worsens the development of colitis in animal models. (Swanson et. al., 2011) Sleep deprivation can lead to increased levels of inflammatory cytokines, which can lead to further activation of the inflammatory cascade. (Kinnucan, 2013) Inflammatory processes can in turn affect sleep pattern and thus create a vicious cycle and positivefeedback loop to maintain and perpetuate inflammation. 3

4 The role of melatonin Melatonin is the hormone that drives circadian rhythms. It is present in the gastrointestinal tract in amounts 400 times higher than in the gland that produces it, the pineal gland. Melatonin is a powerful antioxidant and free radical scavenger. In animal experiments, melatonin has been found to be capable of preventing experimentally induced colitis. Researchers have studied the effects of melatonin in other chronic health conditions. In patients with IBS, the use of melatonin resulted in symptom control and improvement in the quality of life. (Lu, 2005; Song, 2005) So far, there have been no research published on the use of melatonin in human subjects with IBD. What human evidence do we have? A large retrospective study looking at over 12,000 German workers found that those who worked long or irregular hours had an increased prevalence of IBD compared with those who worked regular hours. (Sonnenberg et. al., 1990) In shift workers, disrupted sleep leads to an increased risk in a number of gastrointestinal diseases such as gastroesophageal reflux disease peptic ulcer disease and irritable bowel syndrome (Demeter t. al., 2004); (Segawa et. al.,1987); (Nojkov et. al., 2010) A large online survey completed by over 3100 patients in the CCFA IBD cohort found that patients with CD in clinical remission and subjective sleep disturbances had a 2-fold increased risk of active disease 6 months later. Patients with ulcerative colitis (UC) were not found to have this same association. The study also showed an association between disease activity, depression, female sex, and the use of corticosteroids or narcotics with abnormal subjective sleep complaints. (Ananthakrishnan, et. al. 2013) 4

5 How is this important and intriguing problem being investigated? A review of the literature, done up until 2013 was conducted: 28 papers were reviewed, but only three studies (five published papers) were classified as high-quality studies. In the majority of the studies, fatigue was measured as a secondary outcome, rather than the primary focus of the investigation. Almost half of the papers were published between , indicating an increased interest in IBD-fatigue. Nutritional factors and the impact of diet were not studied. None of the 28 studies asked patients to describe the experience of fatigue (Czuber-Dochan et. al., 2013) What is the Role of Psychological Distress? Anxiety, depression and stress were consistently associated with fatigue. It is difficult to ascertain if anxiety and depression are the cause of fatigue, or its outcome, or can each interact with the other. (Czuber-Dochan et. al., 2013) People with higher levels of hope report less stress and, in turn, less fatigue. Hope is related to the ability to adaptively select meaningful future goals and also identify means of attaining those goals. (Hirsch et. al., 2014) Depression vs. Fatigue Fatigue and sleep problems may be a related to clinical depression, IBD or both. Clinical depression is more than just having lots of negative feelings, which may be perfectly normal for someone with a chronic illness. Clinical depression is a progressive, sometimes fatal mental illness that is highly treatable with therapy and/or medication. 5

6 Look for other signs of clinical depression besides fatigue: Significant changes in mood and activity that go on for two weeks or longer. Loss of enjoyment in things that were previously pleasurable, such as food, spending time with loved ones and pets. Feeling sad most days, for most of the day Frequent thoughts of ending your life. Making a plan to end your life. Coping with fatigue Follow up medically: Find out if you have active IBD. This could be done by a blood test or stool test. If your IBD is active, see if the fatigue improves as your IBD improves. If your IBD is in remission, you could ask for a blood test to check for anemia, iron deficiency, vitamin B12, and other chemical or nutrient deficiencies. Manage your negative emotions: Anger, fear and sadness are normal for someone with a chronic illness. Avoid catastrophizing: This is just getting worse and worse. I m going to lose my job. Think positive thoughts: I have gotten better before, so I have every reason to believe that this too shall pass. Acceptance: This is just how it is today. I will do my best, and that will have to be enough. 6

7 Changes in behavior that may help: Exercise: on some days, going to the mailbox counts! Pacing Prioritizing Sleep Hygiene Sleep Hygiene Avoid napping during the day. Avoid stimulants such as caffeine, nicotine, chocolate and alcohol too close to bedtime. Exercise can promote good sleep. Food can be disruptive right before sleep. Ensure adequate exposure to natural light. Establish a regular relaxing bedtime routine. Associate your bed with sleep. Make sure that the sleep environment is pleasant and relaxing. IBD specific suggestions: Consider scheduling your last meal several hours before bedtime to avoid waking up to use the bathroom. If you have night sweats try sleeping on a towel or two and keeping a change of clothes and another pillow or pillowcase close to your bedside. This way, you can clean up and get back to sleep without getting out of bed or turning on a light. 7

8 Can medications help? Infliximab 5 mg/kg appears to be effective in reducing fatigue, and adalimumab 40 mg administered every other week appears to be most clinically effective in reducing fatigue in patients with CD who are already known to respond to adalimumab treatment. The effect on UC in unknown. (Czuber-Dochan et. al., 2013) Sleep medications are controversial, since they interfere with the natural sleep/wake cycle. Some medical providers see them as training wheels to get someone whose functioning is very poor back on track. Further support for patients: Provides guidance to help you: Self-assess fatigue levels and their impact Find ways to raise fatigue symptoms with healthcare professionals Assess whether changes in lifestyle are having any impact on fatigue levels Discuss fatigue with family, friends and employers Further scientific reading: Sleep and Inflammatory Bowel Disease: Exploring the Relationship Between Sleep Disturbances and Inflammation. Kinnucan, J. A., Rubin, D. T., & Ali, T. Gastroenterology & Hepatology, 9(11), (2013). 8

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