Inflammatory bowel disease (IBD) is a complex, chronic condition affecting millions of people. Even though IBD is now a worldwide disease, misconceptions and confusion about diagnosis, management, and treatment. In a recent episode of the About IBD podcast, Amber Tresca and Dr. Katie Dunleavy, a Boston-based gastroenterologist and IBD specialist, talked over the basics of IBD.
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In listening to this episode, people living with IBD and care partners will learn new facts about Crohn’s disease and ulcerative colitis. Those outside of the IBD community can expect to get a master class in IBD basics, which will help them better understand anyone in their life — students, co-workers, or friends — living with a form of IBD.
What is IBD? Understanding the Basics
IBD as a chronic, immune-mediated condition in which the body’s immune system mistakenly attacks the digestive tract. This causes inflammation in the digestive system leading to ulcers (sores) in the digestive tract, bleeding, diarrhea, and other symptoms. Over time, the inflammation can cause significant damage, such as scarring, and complications.
Highlights:
- IBD is not a one disease but a group of disorders, including Crohn’s disease, ulcerative colitis, and indeterminate colitis.
- It is a condition that lasts a lifetime, with periods of flare-ups (active disease) and remission (less active or inactive disease).
- The causes are unknown, but it’s thought to develop out of a combination of genetic, environmental, and immune factors.
Advice for patients and care partners:
- Stay up-to-date about how IBD is being better understood and recognized.
- Recognize that IBD is not caused by anything you did or ate; it is caused by a complex interplay of factors beyond your control.
IBD vs. IBS: Why the Difference Matters
A common source of confusion is the difference between the IBDs and irritable bowel syndrome (IBS). Dr. Dunlevy points out that the acronyms (which are too similar!) and some symptoms overlap, but these are extremely different conditions.
IBD Basics:
- Involves chronic inflammation of some part of the digestive tract.
- It can cause structural damage, strictures, fistulas, and systemic (outside the digestive tract) symptoms.
- Diagnosed with tests such as endoscopy (like colonoscopy).
- Requires specific treatments, often including medications that selectively suppress the immune system.
IBS Basics:
- A disorder of gut-brain interaction—there is no inflammation or structural damage.
- Symptoms include abdominal pain, bloating, diarrhea, or constipation.
- Diagnosed through the Rome Criteria, not tests such as colonoscopy.
- Managed with dietary changes, stress management, and sometimes medications that alter gut motility (how stool moves through the intestine).
Why The Differences Matter:
- Misdiagnosis can lead to inappropriate treatment, delayed care, and increased risk of complications.
- Accurate diagnosis requires a combination of clinical evaluation, endoscopy, and pathology (lab tests and biopsy results).
Advice for patients and care partners:
- If you have persistent or severe digestive symptoms, advocate for a thorough evaluation, including endoscopic and laboratory testing.
- If a diagnosis of IBS doesn’t fit the symptoms, advocate for yourself or your loved one for more testing.
Recognizing Symptoms: When to Seek Help
IBD symptoms can be subtle or severe, and Dr. Dunleavy stresses the importance of not normalizing abnormal symptoms.
Common symptoms:
- Abdominal pain or cramping
- Blood in stool
- Fatigue
- Fecal urgency or incontinence
- Nocturnal (nighttime) bowel movements
- Persistent diarrhea or constipation
- Unintentional weight loss
- Extra-intestinal symptoms:
- Eye inflammation Joint pain or swelling
- Liver or kidney issues
- Mouth ulcers
- Skin rashes
In children:
- Poor growth or delayed puberty
- Malnutrition
Advice for patients and care partners:
- Track symptoms and note any changes in bowel habits (such as diarrhea or constipation), especially if they last longer than six weeks.
- Seek medical attention right away for blood in stool, severe pain, or unexplained weight loss.
- These are not symptoms of IBS.
- Trust your instincts—if something feels wrong, advocate for more testing.
Getting a Diagnosis: What to Expect
Diagnosing IBD can be complex and sometimes delayed, especially in people who are not “typically” thought to be at risk for an IBD.
Highlights:
- Detailed medical history (including how many bowel movements a day) and physical exam.
- Includes a rectal exam (where a clinician inserts a lubricated, gloved finger into the anus) if bleeding or other rectal symptoms are present.
- How long symptoms have been present and how they impact daily life.
Laboratory Tests:
- Blood tests for anemia, inflammation (CRP, ESR), and nutritional deficiencies.
- Stool tests to rule out infections (such as infection with C. difficile).
Fecal Calprotectin:
- A stool marker that is a result of inflammation in the digestive system.
- Fecal calprotectin levels are higher in people with IBD and when there is inflammation present.
Colonoscopy:
- The gold standard for diagnosis of IBD (not for IBS).
- Allows the clinician to view what is going on inside the colon and take a biopsy of the colon and the terminal ileum (last section of the small intestine).
Imaging Studies :
- CT scan or MR enterography for seeing what’s going on in the small bowel, especially in Crohn’s disease.
- These tests give a good overview of the GI tract without being invasive.
Advice for patients and care partners:
- Ask your provider to explain the purpose and the results of each test.
- If you have a family history of IBD, mention it, but remember that many patients have no family history.
- Keep copies of your test results and pathology reports for your records.
Treatment Options: Personalizing IBD Care
The landscape of IBD treatment is changing every year, with more medications available and the approach to management evolving. Dr. Dunleavy points out that IBD care should be personalized and evidence-based.
Medication Options:
- Aminosalicylates (5-ASAs): For mild to moderate UC.
- Corticosteroids: For short-term control of flares; not for long-term use.
- Immunomodulators: Azathioprine, 6-MP, methotrexate.
- Biologics: Anti-TNF agents, anti-integrins, anti-IL-12/23 agents.
- Small Molecules: JAK inhibitors, S1P modulators.
Diversity of Administration Methods:
- Oral
- Injections (including on-body injectors)
- Infusions
Personalizing Treatment:
- Medication options should consider patient preferences, lifestyle, and family planning goals.
- Should consider any contraindications (such as not wanting or being able to self-inject or the time commitment of infusions).