How I Turned A Corner With My Crohns Disease
On Thanksgiving 2013, I began experiencing intense stomach and back pain. I thought Id 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 cant 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. Its 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.
Identification And Selection Of Studies
We searched for studies published in Medline and EMBASE up to May 2017. The search strategy for Medline was as follows: AND OR physical examination OR physical ) AND impairment ) AND OR “inflammatory bowel diseases” OR OR “inflammatory bowel disease”) , with the filter child . For EMBASE, the search strategy was as follows: AND Inflammatory AND AND . We restricted our search to studies published in English. Duplicate articles identified in both Medline and EMBASE were manually deleted in End Note. To identify additional relevant studies, we checked the reference lists of the selected articles.
We selected cross-sectional or case-control studies reporting on fatigue in patients under the age of 19 years with IBD. Two reviewers independently screened the abstracts of all identified articles to determine their eligibility. Any disagreements regarding the inclusion of articles were solved by discussion until consensus was reached.
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Prepare For Your Er Visit
Getting emergency treatment for Crohns-related illness means you have to be an informed patient, especially if youre in an ER that may not see a lot people who have Crohns. Be very clear about what symptoms you have and what medicines youre on, Bonthala says. Write them down and tell the doctor what brought you to the ER. If you have had similar issues in the past, tell them what helped.
Simkin makes a point of going to the ER that is associated with her gastroenterologists practice, so they already have access to her medical records. But if your usual hospital isnt available, be sure to ask for a thorough abdominal exam to check for any bloating or tenderness, blood tests to check for inflammatory markers, a stool test to check for infections that can mimic a flare, and a CT scan to check for blockages.
You can also keep your medical info and doctors contact information on you in case of an emergency, and download screenshots of your colonoscopy results and CT and MRI scans in case you cant get on the hospitals WiFi.
Preparing mentally is something people often dont think of but has been critical to Simkins care. The anxiety can get away from you, she says. Download something soothing guided meditation, a podcast, whatever soothes you. Itll help you breathe through the pain and lock out a lot of the noises that are going on during that hard time.
Musculoskeletal Conditions Or Joint Pain
Inflammation from Crohns disease can affect your entire body, especially your musculoskeletal system and your joints. Arthritis, or inflammation of the joints, is seen in up to 30 percent of people with Crohns disease. Pain or swelling from arthritis can also cause reduced flexibility, which can present mobility challenges for some people.
Musculoskeletal conditions that can also occur with Crohns disease include:
- fibromyalgia, widespread musculoskeletal pain that includes fatigue, sleep, memory, and mood issues
- inflammatory back pain
- sarcopenia, which includes loss of muscle mass and function and low muscle strength
To manage musculoskeletal conditions or joint pain from Crohns disease, you can use ice to alleviate swelling or heat to reduce pain. NSAIDs or nonsteroidal anti-inflammatory drugs, like Motrin or Aleve, can also help you manage pain and swelling. If youre dealing with mobility challenges, consider yoga or light stretching to improve flexibility.
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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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Fatigue For A Patient Like Me
Fatigue means STOP moving right now, even though thats often not even feasible. It means I can sleep on and off for 12 hours and feel not one bit better than when I went to bed.
It also means that the restless sleep that I do get feels miserable, requires coaxing to fall into and caffeine to withdraw from. It means my spine aches deep into the core of my body, like a silent alarm screaming you cant live this fast. You cant ignore this.
It means that Im struggling, really struggling to function, and yet, trying to function anyway.
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Why Does Crohns Disease Cause Fatigue
Fatigue is one of the most common symptoms of Crohns Disease, and there are several reasons why it occurs.The chemical signals that are produced when the body becomes inflamed impact the brain. This causes a lack of energy and fatigue. You may also be experiencing anaemia, which is known to cause extreme tiredness.Due to the digestive troubles the condition causes, it can also lead to a nutritional deficiency. This in turn will cause fatigue. Other causes include issues with sleep, arthritis, and medications.
Comparison Of Patients With A Clinically Active And A Clinically Inactive Disease
Results showed that there was no significant difference between anxiety scores of patients with an active disease and those with no disease activity: both groups reported clinical-level anxiety, with no decrease when the disease was no longer active. There were significant differences in fatigue and depression in relation to disease activity. Patients with an active disease reported significantly more fatigue and depression .
Regarding emotional processing, patients with an active disease had significantly more difficulty on all dimensions of emotional processing. Compared to patients with a clinically inactive disease, they showed greater avoidance of emotional triggers, had a more detached experience of emotions, exerted more control of emotional experience and expression, and showed a higher tendency to express anger.
Finally, it is important to note that scores for avoidance, emotional suppression and unprocessed emotion were particularly high in the active disease group. In other words, these patients had impoverished emotions, avoided negative stimuli, perceived events as significantly more external to them, and experienced more anger than patients with an inactive disease.
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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 Crohns 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. Im looking for some new IV meds that may help control it to a mild roar.
Ological Limitations Of The Review
The cross-sectional design of most included studies precludes the ability to draw conclusions concerning the causal relations between variables. Prospective observational cohort studies are needed to gain more insight into the direction and mechanism of the identified associations. If prospective cohort studies are conducted in ethnically and socioeconomically diverse groups of children and adolescents, causative factors of fatigue can be identified, and these could potentially lead to more efficacious ways of treating fatigue in adolescents with IBD.
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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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Biological Factors Related To Fatigue
Disease activity: All included studies observed a positive correlation between disease activity and fatigue, but the scoring systems used to discriminate active disease from disease remission differed among the papers. The team from Chicago and Texas used the Pediatric Crohns Disease Activity Index and defined disease remission as a score < 10. They reported that children with active Crohns disease had significantly more symptoms of general fatigue and sleep/rest fatigue than children and teenagers in remission. The Finnish study among 160 children and teenagers used a visual analogue scale to measure disease activity. Children with severe IBD had significantly more trouble falling asleep , felt significantly more overtired and had significantly longer sleep duration than adolescents with less active disease . In that study, the results of the self-reported questionnaires and the parent reports were very similar when the adolescents had higher VAS scores, but this was less true in the parent-adolescent pairs with mild IBD symptoms.
Medication: The research team from Chicago and Texas evaluated the association between fatigue and medication and concluded that the use of mesalamine, thiopurine or anti-tumor necrosis factor were not predictors of fatigue as measured with the PedsQL Fatigue Scale.
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Other Things That May Help With Fatigue
Some people find probiotics help them with their energy levels. However, there have not been any studies yet to see if probiotics help with fatigue in people with Crohns and Colitis. Our other treatments page has further information on probiotics.
There have been some promising results showing electroacupuncture may help with fatigue. However, results are early and more research is needed.
Stopping smoking and reducing the amount of alcohol you drink may also help with fatigue.
Loss Of Appetite And Ibd
Decreased appetite and reduced food intake in people with IBD are often the result of digestive tract symptoms, side effects from medications, and inflammation. A loss of appetite may lead to weight loss, which occurs in as many as 70 percent to 80 percent of people hospitalized with IBD and in 20 percent to 40 percent of people with IBD who are treated on an outpatient basis.
MyCrohnsAndColitisTeam members frequently discuss their experiences with reduced appetite. I have no appetite lately. I even struggled to eat my favorite dessert last night, a member wrote. Another said, Im feeling very exhausted from work and barely have an appetite.
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Tips For Coping With Ibd Fatigue
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Cynthia Taylor Chavoustie, MPAS, PA-C
Medically Reviewed
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Cynthia Taylor Chavoustie, MPAS, PA-C
Medically Reviewed
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IBD fatigue is more than being âjust tired.â These tips can help you manage it.
Symptoms of inflammatory bowel disease can vary quite a bit, from typical gastrointestinal pains to joint pain. One of the most commonly experienced symptoms is fatigue.
Many people will still experience fatigue even when their GI symptoms are in remission. This level of fatigue makes it difficult to keep up with a well-rounded life of working, socializing, and creating. It can be discouraging and frustrating.
Early on, I named my fatigue âCrohnâs fatigue,â because it was unlike any other type of tiredness I had ever felt. Itâs more than just being tired. Itâs a whole-body lethargy.
When that last bit of energy is gone, there is little more to do but lay down. It feels like being out of commission.
Now that Iâve lived with IBD for a decade and a half, Iâve had plenty of time to figure out the ways to maintain life with limited energy, because we all know thereâs no pause button on life.
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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Diarrhea And Other Symptoms
Symptoms of Crohns range from mild to very severe. For example, people with mild disease may have abdominal pain or frequent diarrhea, but can eat normally and dont have weight loss. People with very severe disease have high fevers, persistent vomiting, intestinal obstructions or abscesses and severe weight loss.
While Crohns affects the digestive tract, it may also cause extraintestinal symptoms. These symptoms affect parts of the body outside the digestive tract, such as the eyes, joints and skin.
Symptoms of Crohns include:
- Weight loss
Appetite Loss From Medication Use
Drugs that are used for the treatment of IBD are another factor in decreased appetite. Immunomodulators such as Purinethol and Prograf are associated with appetite loss as a common side effect, as are other IBD medications. Although corticosteroids may increase appetite, they can also cause a decrease in appetite as a side effect.
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Implications For Clinical Practice
Future research opportunities: The mechanism underlying fatigue in children and adolescents with IBD remains poorly understood. Fatigue is a subjective sensation and presents with a multitude of symptoms, which makes it difficult to describe, measure and quantify. Past studies have mainly focused on one aspect of fatigue. Future studies should explore fatigue manifestations at several levels simultaneously, including illness-related aspects , physical functioning , and psychobehavioral factors.
Ibd & Related Conditions
One common reason for fatigue is anemia. People with IBD may be anemic either due to frank blood loss from the intestine , or from an iron deficiency. Malabsorption of vitamins and minerals is common in IBD, and without enough iron, folic acid, and vitamin B12, the body can’t make more red blood cells. Treating the cause of the anemia, be it stopping the bleeding or supplementing with iron or B vitamins, would be the best course of action to treat anemia associated with IBD.
Arthritis is the most common extra-intestinal complication of IBD. Another type of auto-immune disease, arthritis, comes with its own causes of fatigue, such as pain and inflammation. Some forms of arthritis will improve when IBD is under control, and other forms are independent of the status of the IBD. If arthritis is a suspected cause of fatigue, the best course of action would be to treat both the IBD and the arthritis.
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Understanding Crohn’s Disease & Ulcerative Colitis Symptoms
Fatigue is a non-specific symptom of many diseases and conditions. Feeling tired could be the result of not getting enough sleep, or not getting enough quality sleep. In the U.S., we are constantly shortchanging ourselves on sleep, and most children and adults do not get enough. Fatigue, however, is more than being tired and it can’t necessarily be overcome by getting some sleep. Fatigue is a symptom often associated with inflammatory bowel disease and tends to be one that is brought up frequently as being most problematic in lowering quality of life.
Chronic fatigue can lead to a host of other problems, including poor performance at work and school, drowsy driving, and feelings of depression. Figuring out that fatigue is a problem is not difficult, but determining what is causing it and what to do about it is no easy task. The reasons people with IBD may feel fatigued include medication side effects, sleep disturbances, related conditions such as anemia, and a flare-up.
