Altered Gut Microbiome And Its Impact On The Gutbrain Axis
Our current strategies of microbial manipulation include antimicrobials, fecal bacteriotherapy, and probiotics. Antimicrobials have questions around their safety, specificity, and durability . A systematic review of randomized control studies of probiotics found only support for a single formulation in a narrow indication of preventing UC relapse. However, this formulation as originally studied no longer exists under that trade name, but has been rebranded as Visibiome . At this point, there are microbial changes associated with disease activity and fatigue, but currently no narrowly targeted strategy exists to manipulate the microbiome to manage fatigue.
How Common Is Fatigue In Inflammatory Bowel Disease
Fatigue affects many people with IBD, and it occurs more frequently among people with Crohn’s disease. Approximately 54% of people with Crohns disease and 33% of those with ulcerative colitis report experiencing fatigue.2 Fatigue also seems to worsen with more aggressive disease, with the people with the most aggressive Crohns disease most likely to report fatigue.9 Up to 86% report feeling fatigue during moderate-to-severely active Crohns disease.3 Even during remission, about 40% to 50% of patients with IBD disease report fatigue.3,9
Treat Underlying Anemia And Other Conditions
Anemia is a big issue that we have realized we have been under treating, Dr. Streett says. Anemia in IBD is often treated with IV iron infusions. Simply adding more iron to your diet wont cut itif youre severely lacking iron, you wouldnt realistically be able to consume enough to make up for it, and absorption issues complicate things even further.
Oral iron supplements may be given if youre in remission or dont have active inflammation in the intestine, but people with active Crohns may not be able to tolerate the supplements, so doctors often opt for infusions. Infusions also are more effective, since they dont rely on absorption in the gut. The number of iron infusions you need will depend on the severity of your anemia and whether your Crohns is still actively impacting iron absorption or not.
Your doctor may also refer you to a hematologist to treat you. Of course, youll also need to get the underlying Crohns under control to prevent anemia from happening again.
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Risk Factors For Developing Crohns Disease
Some people may be at greater risk for Crohns disease than others. This includes people under the age of 30, people of Ashkenazi descent, and people who live in urban areas.
People who use such nonsteroidal anti-inflammatory medications as Ibuprofen, Naproxen sodium, or Diclofenac sodium are also at risk in some cases, and should consult their doctor before using them. Dr. Ali said that consumption of red meat and refined sugars are also factors.
Most of these environmental factors, I personally believe, impact your gut bacteria, Dr. Ali said. Then, the balance of that gut bacteria has shifted, and now you’re having more bad bacteria, more pathogenic bacteria.
The First Ever Fatigue Rating Scale For Ibd
In-depth qualitative interviews with our study volunteers confirmed that fatigue is a big issue with a severe impact on many areas of life. They also confirmed a need for a tool to measure fatigue, to enable people with IBD to discuss fatigue with their health care professionals and test interventions and treatments.
Fatigue scales have been used in many other conditions to help patients and doctors measure levels of fatigue. Before this research study there had been no fatigue scale for people with IBD.
Our fatigue scale which can be accessed and scored below will enable people living with IBD to:
- self-assess their fatigue and the impact is has on their lives
- more easily raise their fatigue symptoms with healthcare professionals
- assess whether changes in lifestyle are having any impact on fatigue levels
- discuss their fatigue with family, friends and employers
People with IBD may wish to take a completed fatigue scale to appointments with their health care team.
Healthcare Professionals
Further Reading: Development and psychometric testing of inflammatory bowel disease fatigue patient self-assessment scale
If you would like any help in using the scale or would like to send your feedback please email
If you would rather complete your self assessment on paper you may and print off the pdf instead. Then check against the scoring instructions.
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Causes Of Crohns Disease
The exact cause of Crohns disease remains unknown. Previously, diet and stress were suspected, but now doctors know that these factors may aggravate, but dont cause, Crohns disease. Several factors, such as heredity and a malfunctioning immune system, likely play a role in its development. According to the NIH, the majority of cases develop between the ages of 15-30 or 40-60 and can flare up and subside in an unpredictable manner.
- Immune system It is possible that your immune system incorrectly identifies bacteria in the gut as harmful and wrongfully targets them, doing mild to severe damage to your intestinal tract in the process.
- Hereditary Condition While having a family member who has Crohns may increase your risk, the vast majority of people who have the condition, have no relatives with Crohns.
How I Turned A Corner With My Crohns Disease
On Thanksgiving 2013, I began experiencing intense stomach and back pain. I thought I’d pulled a muscle, but then started vomiting. In the ER, imaging revealed Id developed a fistula. Fistulas are another common Crohns complication, which results in a tunnel-like hole between inflamed intestinal walls. I underwent a multi-hour surgery to remove 10 centimeters of small intestine.
Ive been in remission and off meds since. Learning how to listen to my bodys subtle changes puts me in a different relationship to my health, wellbeing and lifestyle. In 2017, I moved to Colorado, seeking a more relaxed pace. Ive worked for several digital health startups, and in early 2021 I helped launch the start-up Lin Health, an app focused on chronic pain relief.
I eat a 90% plant-based diet, eating red meat just once annually. Yoga, movement, and meditation practices help me manage stress despite a demanding job. You can’t remove all the stress from your life, but you can react differently. Or, as a favorite Jon Kabat-Zinn quote says: You cant stop the waves, but you can learn to surf.
I also realized I have to be my own advocate. What often gets recommended works for many people, but need to do what feels right to you. It’s harder to get someone to change their diet and lifestyle versus taking a pill. It can take time for new research to work itself into clinical practice, so I read new studies and relay them to my open-minded physician.
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Why Crohns Disease Triggers Fatigue
Fatigue has been shown to be more prevalent in people with Crohns disease, and sometimes its related to a flare, says Richard Seth Bloomfeld, MD, a gastroenterologist at Wake Forest Baptist Medical Center in Winston-Salem, North Carolina. But fatigue is also common when the disease is well controlled, and we dont know why that is.
Here are a few causes of fatigue in people with Crohns.
Practical Support Can Help As Much As A Hug
If someone you know or love has Crohns disease, emotional support is vitally important. Listen to their feelings, and be supportive and understanding. Practical aid can also be helpful.
Offer to do the grocery shopping, take them a home-cooked meal, or help out with other household errands. This can help remove stress from a persons life. You may also offer to tag along to a doctor visit. Sometimes an extra ear is welcome and helpful.
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Nail Down A Solid Treatment Plan
The first step for reducing Crohns fatigue is to get the disease under control. If youre feeling fatigued more often than not, talk to your doctor so they can reassess your treatment plan. With the right treatment or combination of treatments, you can get Crohns into remission, Dr. Streett says. This can take a lot of trial and error, but its worth it for both the short and long term.
Chronic inflammation unabated can cause irreversible damage over time to the GI tract, so it is important to try and suppress this inflammation with a therapy, Dr. Streett says. When people can achieve remission, their energy tends to return. Your first step is working with a Crohns specialist, or team of specialists, to get on a treatment regimen that works for you and your body.
How To Manage The Undermanaged Sneakiest Symptom Of Crohn’s Disease
To the outside world, most of my symptoms are invisible. If I go about my day with a smile on my face and a perky, positive attitude, no one will think twice. Thats kind of how it goes. Ive never been one to complain about how Im feeling. No one wants to be a Debbie Downer. Plus, most of my symptoms arent things I want to talk about with others, especially co-workers and friends. I dont want to have to quickly walk to the bathroom and have everyone in the room thinking, Uh oh, I bet she has to poop!
Unfortunately, my symptoms arent invisible to me. I deal, on a daily basis, with something my Crohns disease has caused diarrhea, stomach pains, nausea and so on. There seems to always be at least one moment of every day when Im reminded of my disease.
However, there is one symptom that doesnt often cross my mind fatigue. Its not that I dont experience fatigue. Its actually one of my most debilitating and consistent symptoms, and it often hangs around even when Im in remission. The thing with fatigue is that it isnt like the other symptoms. Its not really triggered by what I eat, it doesnt involve lengthy trips to the bathroom and it doesnt cause me pain or discomfort. Its sneaky, and I often overlook it as a result of overworking myself or not getting enough sleep, which is why it is also my most undermanaged symptom. I typically just try to ignore it and push past it or try to solve the issue by catching up on my sleep on the weekends.
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How Is Fatigue Evaluated
Many different scales and questionnaires are used to measure fatigue. No single standard exists.3 One questionnaire about fatigue with inflammatory bowel disease was developed and scientifically validated in the United Kingdom and is available online. You or your provider may be interested in using this questionnaire to track changes over time.1
Your health care provider may do laboratory tests. It is common to check for anemia, active inflammation, thyroid function, or pregnancy.10 Your provider may ask questions about sleep hygiene, medications, and exercise.
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Crohns Disease Can Have A Huge Impact On A Persons Life
Crohns disease often starts when a person is young and continues to affect them throughout their life. Because of this, the disease can take a toll on even the strongest person. Not only can the symptoms become debilitating, but also people with Crohns often have multiple doctors appointments, tests, and procedures. Between the symptoms and the regular appointments, quality of life can be severely impacted.
A fear of rushing to the bathroom at any given moment, of being intimate, or explaining symptoms to friends can pervade everyday thoughts. Social outings can be stressful and your productivity at work may suffer.
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Treatments For Extreme Tiredness And Lack Of Energy In Inflammatory Bowel Disease
Review question
What are the effects of drug and non-drug treatments on fatigue in individuals with inflammatory bowel disease compared to no treatment, placebo or active comparator ?
Background
IBD is a life-long illness that causes inflammation and ulceration in the gut. Crohn’s disease and ulcerative colitis are the two main types of IBD. People living with IBD often experience fatigue, which can be burdensome and negatively impact on their quality of life. Different treatments, such as medications and exercise, may improve fatigue. However, it is unclear what the effects of such treatments on fatigue in IBD are. This review presents the available evidence of the effectiveness of treatments on fatigue in IBD.
Search date
Extensive searches were undertaken from inception up to July 2018. A top-up search was run in October 2019.
Study characteristics
Fourteen studies met the inclusion criteria. Nine different drug trials, four non-drug trials and one multimodular trial were included in the review. Thirty ongoing studies were also identified and five studies are awaiting classification. In only four trials was managing fatigue the aim of the intervention. In the remaining trials the interventions were aimed at managing other symptoms, including fatigue. Data on fatigue were not available for the fourteen trials, therefore, the findings of this review are based on 1344 participants in nine trials. Most studies were small in size and had low or very low quality of evidence.
Patients With Ibd Report Inadequate Sleep
Survey studies confirm the presence of sleep concerns in patients with IBD. A majority of these studies utilized validated questionnaires to assess subjective sleep quality including the Pittsburgh Sleep Quality Index , the Patient-Reported Outcomes Measurement Information System , the Modified Fatigue Impact Scale , or the Epworth Sleepiness Scale . Data from these studies was consistent and patients with IBD, regardless of whether disease was quiescent or active, reported poorer sleep than healthy controls .
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Bivariate Relations Between Variables
We analyzed the bivariate relationships between age, sex, Disease Activity, depression, anxiety, the total score of the emotional processing variable and its five dimensions and fatigue. The results are shown in Table 3. Gender was positively associated with the total fatigue score , women having higher scores than men. The younger participants had higher scores for anxiety and emotional suppression . Furthermore, Disease activity was positively correlated with depression , emotional processing , and fatigue , but not with anxiety . In fact, the only variable that correlated significantly with anxiety was fatigue. Finally, emotional processing was positively correlated with fatigue .
Table 3. Pearsons r correlations of variables .
Assessment Of Concurrent Symptoms
In order to select an optimal treatment strategy, assessment of concurrent symptoms is mandatory. Many factors are known to contribute to fatigue, such as inflammation, pain, emotional distress, sleep disturbance, anaemia, alterations in nutrition and overall nutritional status, and a diminished activity level. The presence of any of these conditions should be treated in accordance with practice guidelines and with referral to other care professionals as appropriate. Furthermore, medication side effects as well as alcohol and/or drug abuse should be taken into account, as should other comorbidities.
2.2.1. Inflammation
During periods of active gut inflammation, fatigue rates understandably increase. Fatigue, on the other hand, is a highly reported symptom and a major concern in IBD patients and fatigue can be a concealed indication of active disease. Disease activity should be ascertained by the usual clinical, radiological and endoscopic assessments in order to optimize treatment.
2.2.2. Anaemia
2.2.9. Comorbidities
2.2.10. Substance abuse
Alcohol and/or drug abuse are associated with emotional distress, poor sleep quality and anxiety, and should always be assessed in the work-up of IBD-related fatigue.
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Impact Of Crohns Symptoms On Quality Of Life
Crohns disease symptoms affect quality of life to varying degrees. A study in the Journal of Research in Medical Sciences surveyed 71 people with Crohn’s and found the most commonly reported effect on quality of life was poor sleep quality. Other symptoms that affect quality of life include abdominal pain, loss of appetite, anemia, and fatigue.
Members of the MyCrohnsAndColitisTeam community have reported symptoms of Crohns disease that affected their quality of life. Some also described seeing their loved ones living with these symptoms.
The worst part right now are the fistulas, said one MyCrohnsAndColitisTeam member. I have been dealing with Crohns since 1994, but the last six years have been hell. I’m looking for some new IV meds that may help control it to a mild roar.
Fatigue From Lack Of Sleep
Not being able to get enough sleep at night is the leading contributor to dealing with daytime fatigue. There are a numerous causes for daytime fatigue, the top reason being insomnia. Insomnia is the inability to fall asleep or get rest. Factors that can cause insomnia include high stress levels, depression, pain, certain medical conditions and medication side effects.
Crohns also plays a part in getting in the way of a good nights sleep. Frequent and at times emergent trips to the bathroom are common for us Crohnies whether during the day or night. Stomach cramping, bloating and discomfort also makes it hard to find positions to become relaxed enough to fall asleep. If stomach discomfort, nausea or pain is keeping you up, try putting several hours between your dinner time and when you plan on laying down for the night. That way, your digestive track will not be active while you are trying to sleep.
Crohns is an autoimmune disease. While more complex conditions can be present playing a part in this problem, there are some fairly common reasons to look into first.
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Five Types Of Disease
There are five types of Crohns disease according to the Crohns & Colitis Foundation. These are ileocolitis, ileitis, gastroduodenal Crohns disease, jejunoileitis and Crohns colitis. Some medical centers recognize a sixth type called perianal disease.
Each type affects a different part of the digestive tract and causes different symptoms and complications.
Get A Handle On Stress
Real talk: Its stressful to have a chronic disease. The unpredictability and nature of Crohns can make it even more anxiety-provoking. Its hard when you have a disease thats hard for other people to understand and its very personal, so that can create a lot of extra things to try to navigate, Dr. Streett says.
Many people say that stress is a trigger for their IBD flaresand research backs that up. A review published in Frontiers in Pediatrics noted that clinical and experimental studies suggest that stress exacerbates IBD and, on the flipside, evidence shows an increasing incidence of mental health conditions like depression and anxiety in people with IBD. This appears to be the case in both children and adults with IBD. While the mechanism isnt fully understood, research is being done to explore how the gut and brain communicate, and how the immune system factors into it all.
Managing stress is easier said than done. Dr. Streett suggests minimizing the time you spend doom-scrolling on social media and trying to do things that are relaxing and regenerative, like meditation and exercise. Those things help us manage worry and anxiety and help us sleep better, she says. Seeking out support from family, friends, and other Crohns warriors can help.
You can also search for support groups near you and digital groups on the Crohns and Colitis Foundation website.
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