Inflammatory bowel disease (IBD) is a group of conditions that cause inflammation in the digestive system. The two most common forms are ulcerative colitis and Crohn’s disease. Fatigue is the biggest concern of people with IBD because of its significant effect on daily life. Several factors can contribute to and worsen fatigue, including anemia, low iron, vitamin B12, and vitamin D levels, pain, sleep disorders, insufficient exercise, mental health disorders (e.g., anxiety and depression), and inflammation.
These conditions are called immune-mediated because they’re a result of a disorder within the immune system. Genes are associated with IBD, but it is also thought to be triggered by one or more environmental factors.
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What Causes IBD?
The exact cause of IBD is not known. However, it’s thought to be a complex combination of a genetic predisposition and environmental triggers. However, not everyone who carries the genes develops the condition.
Genetic Factors
More than 240 genes have been identified as contributing to IBD. About 30 of these genes have a direct connection. IBD does tend to run in families, but not everyone in the family develops the disease. Several factors are associated with the potential development of IBD.
Environmental Factors
Not everyone who carries the genes for IBD develops the disorder. It's thought this is because one or more factors may trigger it to develop. Some of these may include:
- Eating plans low in fiber and high in processed foods
- Disruption of the gut microbiome (the bacteria, viruses, and fungi that naturally live in the digestive system)
- Infection with a bacteria, virus, or parasite
- Interactions in the brain-gut pathway that alter the microbiome (such as stressful life events)
- Living at a higher elevation
- Smoking, which has a protective effect on ulcerative colitis but worsens Crohn’s disease
- Air pollution
Immune System Dysfunction
IBD is considered an immune-mediated condition. The body’s immune system plays a role in the development of this disease and its flare-ups, but it's not yet completely understood.
It's thought that the immune system may be targeting the normal bacteria in the gut. Over time, the balance of the gut microbiome is disrupted, which is called dysbiosis. This could be one factor in the development of IBD.
Medications
Medications that alter the makeup of bacteria in the gut may also be involved in the development of IBD. Some of these include nonsteroidal anti-inflammatory medications (NSAIDs) and antibiotics. Being exposed to these types of medications often and/or early in life may increase the risk of developing IBD for some people.
Age
IBD can be diagnosed at any age. However, studies show ulcerative colitis most commonly occurs between the ages of 20 to 30 years. Crohn’s disease is diagnosed earlier, usually in a person's teens and 20s. Another 16% of people are diagnosed after the age of 65 years. It’s estimated that only 4% of people are diagnosed before the age of 5 years.
Race or Ethnicity
Some geographic areas have higher rates of IBD. People of Ashkenazi Jewish descent (people of Jewish heritage mainly descending from Central and Eastern Europe) have a higher risk of developing the disease. Caucasian people also tend to be diagnosed with IBD at higher rates than other races.
IBD Symptoms
IBD affects everyone differently and there are numerous symptoms.
However, fatigue is the biggest concern among people with IBD. It affects 80% of people with IBD with active disease and 50% of people with remission. Fatigue is more than just feeling tired; it's an extreme tiredness that doesn't resolve with adequate sleep. It can include a feeling of heaviness, low energy, and poor concentration, or brain fog, which can be unpredictable.
Causes of fatigue may include:
- Inflammation
- Anemia
- Nutritional deficiencies (iron, vitamin B12, vitamin D, folate, thiamine, calcium, magnesium, selenium)
- Medications (steroids, methotrexate, azathioprine)
- Poor sleep
- Flare-ups
- Dehydration
Some ways to help with fatigue include:
- Improve sleep: Limit caffeine after 3 p.m., and don't nap.
- Stick to a regimented wake/sleep schedule
- Exercise: Short walks or yoga can help.
- Reduce alcohol consumption
- Don't smoke
- Get mental help support when needed
Additional IBD symptoms may include:
- Abdominal pain and cramping
- Blood in the stool
- Diarrhea
- Fatigue
- Fever
- Mucus in the stool
- Urgent need to use the bathroom
IBD vs. IBS
Irritable bowel syndrome (IBS) and IBD have many similar symptoms. but they are two different conditions with distinct treatments. People can live with both IBD and IBS at the same time. It may be difficult to determine which condition is causing symptoms.
IBD is an immune-mediated condition, whereas IBS is a disorder of gut-brain interaction. People who have IBD and who still have symptoms, even when the disorder is in remission, may also have IBS.
IBS does not cause symptoms of fever or rectal bleeding. It is often treated with lifestyle and dietary changes. Some people may find that medications are needed to control symptoms. Surgery is not used as a treatment for IBS.
How Is IBD Diagnosed?
IBD is most often diagnosed via a colonoscopy with biopsies (removing samples of tissue to be analyzed in a lab) to check for inflammation anywhere in the large intestine. A sigmoidoscopy is used to see the last section of the colon.
Your healthcare provider may include blood tests to provide additional information.
These may include:
- Albumin level
- C-reactive protein level
- Erythrocyte sedimentation rate (ESR or sed rate)
- Hemoglobin level
- Platelet count
- White blood cell count
Stool tests may also be requested to look for an infection, blood, or a protein called calprotectin. This protein tends to be more prevalent in the stool of people who live with an IBD.
Additional Imaging Tests
Your healthcare provider may want additional imaging tests.
An upper endoscopy examines the esophagus, stomach, and first part of the small intestine (duodenum) to look for any signs of inflammation or unusual tissue. Biopsy tissue taken during the procedure is sent to a lab to examine for changes in the cells.
Finding inflammation in the small intestine is more challenging. More detailed imaging tests may be needed to look at the organs and structures in the abdomen.
These tests include:
- Computed tomography (CT) scan
- Magnetic resonance enterography (MRE): A test that does not use radiation can detect inflammation or other complications in the abdominal organs
- Capsule endoscopy: Done by swallowing a pill with a camera in it, which sends images to a device worn on the abdomen
IBD Treatment Options
Treating IBD involves medications, lifestyle changes, and surgery. Some medications are used short-term to stop inflammation while others are used long-term to prevent symptom flare-ups.
Different types of medications to treat IBD include:
- 5-aminosalicylic acids (for ulcerative colitis)
- Antibiotics
- Biologics
- Corticosteroids, such as prednisone
- Immunomodulators such as 6-mercaptopurine and azathioprine for ulcerative colitis
- Small molecules such as Janus kinase (JAK) inhibitors, including Remicade (infliximab), Humira (adalimumab), and Simponi (golimumab) for ulcerative colitis
Lifestyle changes may also help.
These include:
- Stopping smoking
- Adopting a nutritious eating plan
- Meditating or mindfulness
- Reducing stress
- Exercising
There is no single overall plan. Consult with your healthcare provider to incorporate behaviors that support your health.
There are several different types of surgery for IBD. It depends on the type of IBD and which part of the digestive system is involved.
Surgery for Crohn’s disease can include:
- Resection: Removal of an inflamed part of the intestine
- Strictureplasty: Widening a portion of the intestine that is narrowed from scar tissues
- Proctocolectomy (also called an ileoanal anastomosis or straight pull-through): Removal of the large intestine, then connecting the small intestine to the anus
- Ostomy surgery: Removing a portion of the intestine and creating a stoma on the abdomen for stool to leave the body
Surgery for ulcerative colitis can include:
- Proctocolectomy with a pelvic pouch (also called an ileal pouch-anal anastomosis, IPAA, or J-pouch): Removal of the large intestine and use of the last part of the small intestine to create a rectum that is attached to the anus
- Proctocolectomy with the creation of an ileostomy: Removal of the large intestine and creation of a stoma on the abdomen for stool to leave the body
IBD Complications
IBD causes inflammation, which can affect other parts of the body. It can also lead to complications. Working with a healthcare provider to understand risks and whether it is possible to prevent complications is an important part of living with IBD.
Complications within the digestive system can include:
- Anal fissures (small tears in the tissue lining the anus)
- Bowel obstruction (an intestinal blockage from narrowing due to inflammation or scarring)
- Bowel perforation (a hole in the intestine)
- Colorectal cancer (cancer of the rectum and/or the colon)
- Intestinal abscess (a collection of pus)
- Intestinal fistulas (abnormal connections between two body parts)
- Toxic megacolon (extreme dilation of the colon)
Additional complications may include:
- Anemia (low levels of red blood cells)
- Blood clots (thromboembolism)
- Cardiovascular problems (heart attack or stroke)
- Delayed growth in children (due to malnutrition or a side effect of treatments)
- Eye pain or inflammation
- Gallbladder problems (such as gallstones)
- Joint pain and arthritis
- Kidney or urinary problems
- Liver disease
- Lung disease
- Mouth ulcers
- Neurological conditions
- Pancreatitis
- Skin rashes or conditions (psoriasis)
- Sleep disturbances
- Worsening symptoms during menstruation
Living With IBD
A diagnosis of IBD can bring on many challenges that can affect daily life. Consult with your healthcare provider to learn how to manage your symptoms.
IBD can affect mental health and people with IBD are at increased risk of anxiety, depression, and post-traumatic stress or post-traumatic stress disorder (PTSD).
Creating a care plan can help with all of the challenges of this condition.
This can include:
- Scheduling periodic visits with a gastroenterologist
- Getting regular physical activity
- Managing stress
- Regular screening for complications
- Seeing a mental health professional as needed
- Staying up-to-date on vaccinations
- Quitting smoking
- Taking medication as prescribed
People with IBD can speak to their healthcare provider or ask at their local hospital or IBD center about available resources and support groups.
How to Manage IBD
IBD will need to be managed over a lifetime. There is no way to reverse or cure these conditions. However, there are many ways to help manage them.
The most important part of managing IBD is to reduce the inflammation that leads to complications. This means finding a medication to reduce symptoms so they go into remission and then taking that medication consistently.
People with IBD may also want to avoid triggers associated with flare-ups. There is not enough evidence concerning what causes flare-ups, but there are still measures to help avoid symptoms or cope with them when they do happen.
Ways to avoid triggers may include:
- Avoiding foods that may cause gas and bloating (such as carbonated drinks)
- Avoiding fatty, highly processed, and fast foods
- Staying hydrated
- Getting family-planning counseling from a healthcare provider
- Keeping a food and symptom diary to find any patterns
- Reducing stress via meditation or mindfulness
- Seeking mental healthcare when needed
- Taking vitamins or supplements as recommended by a healthcare provider
- Working with a dietitian to develop a nutritious eating plan
When to Contact a Healthcare Provider
People who have symptoms of IBD (persistent diarrhea, abdominal pain, or bloody stools) should see a healthcare provider for an evaluation. A diagnosis of IBD can take time, so it’s important not to delay seeking care.
Contact your healthcare provider when signs or symptoms worsen or return after remission. There may be a need for testing to determine the cause and adjust your treatment plan.
In most cases, IBD is not considered a life-threatening or fatal condition. However, some signs and symptoms require care in the emergency department. These may include:
- Lack of bowel movements
- Being dizzy or light-headed
- Dehydration (extreme thirst, dark urine, or passing no urine)
- Not being able to eat or drink anything
- Severe abdominal pain
- Vomiting repeatedly or after eating or drinking
Summary
IBD is a group of chronic inflammatory bowel disorders, including Crohn's disease and ulcerative colitis, that can be managed with lifestyle changes, medications, and in some cases, surgery. Although its exact cause isn't known, there are genetic and environmental factors that may contribute to predisposition.
IBD affects the entire body, so it’s important to have a team of healthcare providers to screen for and manage potential complications. Since symptoms of IBD may come and go it's important to consult with your healthcare provider about any new, worsening, or changing symptoms so they can be addressed promptly.