Topic outline

  • IBD Fundamentals

    In this module, we will explore key aspects of IBD, including its definition and epidemiology as well as diagnosis, treatment, health maintenance, and preventative care. Additionally, we will highlight the crucial role of patient-provider partnerships, shared decision-making, approaches to patient education and empowerment, and efforts to address social determinants of health (SDOH) and racial disparities in IBD care.

  • In this chapter, participants will learn about the clinical presentation of IBD, the importance of timely and accurate diagnosis, and approaches to managing IBD.

    Presented by Angelina Collins, NP, MSN, ANP-BC

    Date recorded: May 2024

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    • [00:30]

      Hello, I’m Angelina Collins and welcome to IBDIQ, part of The IBD Project by Takeda, where we’re coming together to help enhance expertise in IBD care—right from the start.

      Thank you for joining me in this overview of inflammatory bowel disease (or IBD) diagnosis and management.

      In this chapter, we will address the presentation of IBD, challenges with timely diagnosis, differential diagnoses, and lastly, approaches to IBD management.

      IBD is a chronic inflammatory disease affecting the gastrointestinal (or GI) tract and is defined by two main types: Crohn’s disease (or CD) and ulcerative colitis (or UC).1,2

      A wide spectrum of diseases can mimic IBD and should be included in a differential diagnosis. These can include: infections, vascular disorders, drug-induced injury, immune disorders, segmental colitis associated with diverticulosis, diverticular colitis, radiation proctitis, diversion proctocolitis, and irritable bowel syndrome.3-5

      [01:29]

      Differentiating IBD from other similarly presenting diseases requires a careful review of clinical history as well as endoscopic, histologic and imaging assessments.3

      Patients diagnosed with UC typically present with manifestations such as rectal bleeding, frequent stools, and a sense of urgency.6 Those with proctitis or rectal inflammation may have an additional symptom known as tenesmus, which is characterized by a sensation of incomplete evacuation, where the need to use the bathroom is felt, but little or no stool comes out. Proctitis affects approximately 30% to 60% of cases at presentation.

      In cases of left-sided colitis, affecting 16% to 45% of patients at presentation, symptoms extend beyond proctitis, involving not only rectal bleeding, tenesmus, and urgency, but also abdominal cramping and diarrhea.6

      [02:17]

      Approximately 15% to 35% of patients with UC have extensive pancolitis at presentation, wherein bloody diarrhea and abdominal pain might be more prominent, and signs of systemic illness may be present.6

      On the other hand, Crohn’s disease manifests in various phenotypes, including inflammatory, stricturing, or penetrating disease, and may include the presence of perianal involvement.7,8 Patients with inflammatory Crohn’s disease predominantly present with diarrhea, abdominal pain, fatigue, weight loss, and other constitutional symptoms.8

      Patients with stricturing disease may have obstructive symptoms, including postprandial pain, bloating, distension, nausea, and vomiting.7,9

      Symptoms of penetrating disease may also include symptoms linked to fistulas or abscesses such as perianal complications manifesting as perianal pain, lesions, or purulent or feculent drainage; passage of stool or air in the urine, frequent, recurrent urinary tract infections; fecal discharge from the vagina, or the development of an abdominal abscess.8,10,11

      [03:20]

      The presentation of IBD can be challenging in that the presenting symptoms can be heterogeneous and insidious, contributing to diagnostic delay.7,9 Additionally, the symptoms of IBD may vary between patients, change over time, and differ in severity.12

      Diagnostic delay can occur in patients with IBD whose symptoms often emerge as early as 5 years before a diagnosis.13 A study conducted at Korea University Ansan Hospital from 2000 to 2015, involving 177 patients with Crohn’s disease and 143 patients with ulcerative colitis, demonstrated median diagnostic delays of 6.2 months for Crohn’s disease and 2.4 months for UC.14 

      Furthermore, according to the health records from a large, primary care research database in the United Kingdom, compared to matched controls, patients ultimately diagnosed with UC and Crohn’s disease were four times more likely to visit their primary care physician for GI symptoms 6 to 18 months before diagnosis.13

      [04:19]

      Similar results have been observed in another study from the United Kingdom. Within a quality improvement study encompassing 304 patients in the UK, the median time to diagnose UC was 3.3 months, while patients with Crohn’s disease typically received a diagnosis in 7.6 months.15

      Notably, 19% of all IBD diagnoses were made after a patient presented to an emergency department.15

      Studies suggest that some contributors to delayed diagnosis include delay in specialist referral, prior diagnosis of irritable bowel syndrome or depression, and missed appointments.13

      Appropriate diagnosis is crucial to avoid delays or errors in treatment.3 Diagnostic delay can be associated with increased complication rate, increased risk of strictures, perianal disease, and surgery.16,17

      Beyond physical complications, delayed diagnosis and worsening disease can have mental health consequences, including higher rates of anxiety and depression in those with IBD compared to those without IBD.18

      [05:16]

      Early diagnosis and management of Crohn’s disease can reduce bowel damage and complications including hospitalization, surgeries, and disabilities.19

      Access to effective healthcare is a key factor for diagnosis of IBD.20 Social determinants of health can impact both healthcare access and outcomes.21 Social determinants of health consist of the following 5 key areas: Economic stability, neighborhood and built environment, education access and quality, social and community context, and healthcare access and quality.21,22 It is important to address barriers to care, screen for social determinants of health, and connect patients to appropriate resources.22

      One approach to help advance health equity is to attain a list of community resources and partnerships.22 This may entail inclusion of federally-qualified health centers, public health agencies, faith-based organizations, and local organizations providing services related to poverty, education, and housing.

      [06:13]

      Working in community health centers can be central to addressing disparities in access to gastroenterology care as these local centers care for a significant amount of low income and marginalized patients.22 New IBD care models that include GI provider and IBD specialist care and services on site at community health centers may help to increase access to care for our patients.

      Having discussed the impacts of diagnostic delay and contributing factors, let’s now turn our focus to the actual journey to IBD diagnosis.

      Patients who exhibit hallmark signs of IBD, some of which include diarrhea, abdominal pain or cramping, weight loss, or fever should be considered for further IBD evaluation.23,24

      At the time of evaluation, a full patient history should include the clinical presentation, recent travel history, medications preceding symptom onset, smoking history, and family history of IBD.23,25,26 Once the history has been taken, there are some signs and symptoms that are specifically associated with Crohn’s disease and UC, which we will discuss next.

      [07:12]

      Red flag symptoms in a patient with Crohn’s disease are GI symptoms that warrant a referral to a gastroenterology specialist, and should not be ignored or confused with other disorders, such as irritable bowel syndrome.27 

      An initiative from the International Organization for the Study of Inflammatory Bowel Disease, or IOIBD, led to the development of the Red Flags instrument to help detect signs and symptoms that necessitate a Crohn’s disease evaluation.

      Red flags include nocturnal diarrhea, abdominal pain for more than 3 months, and systemic symptoms such as fever and weight loss.27 Although the Red Flags Index was developed for adult patients, growth failure in pediatric patients could warrant an evaluation for Crohn’s disease.28,29

      Further, patients with UC experiencing blood in the stool, abdominal pain and cramping, persistent diarrhea with blood in the stool and abdominal pain, or loose and urgent bowel movements should consult a healthcare provider.30

      [08:05]

      The diagnosis of IBD does not rely on a single gold-standard test but is established through assessment of the patient’s medical history and clinical presentation, as well as laboratory, endoscopic, histologic, and radiologic investigations.24-26

      Laboratory testing can help in assessing disease severity and identifying complications and is considered a complementary diagnostic method.24 An initial laboratory evaluation to check for anemia, inflammation, dehydration, and malnutrition is recommended.24,25

      Let’s begin with the complete blood count (or CBC) and the comprehensive metabolic panel (or CMP).23 Anemia and thrombocytosis represent common changes in the full blood count of patients with Crohn’s disease.25 Further, C-reactive protein (or CRP), hemoglobin, and serum albumin levels at diagnosis can aid in assessing disease severity and prognosis.23,25

      [08:57]

      CRP is useful in monitoring acute inflammation.23,25 Elevated CRP levels broadly correlate with disease activity. It is important to remember approximately 40% of people with IBD and mild inflammation do not have elevated CRP, however, when elevated, this can help predict the risk of colectomy and response to treatment in patients with ulcerative colitis.23,24 Additionally, this is more likely to be elevated in active transmural Crohn’s disease than UC, or in more severe or extensive colitis compared to proctitis or mild colitis.31

      It is critical to rule out C. difficile infection which is increased in patients with IBD, and increases risks for complications.32

      Fecal calprotectin is a nonspecific neutrophillic marker of inflammation.33,34 It is also elevated in infectious and inflammatory causes of diarrhea and helps to differentiate from noninflammatory causes such as irritable bowel syndrome.24,34 It can be used to prioritize some patients for endoscopy.34,35 It can also be used to assess response to treatment in patients whose biomarkers have been observed to correlate with endoscopic disease activity.34

      [10:00]

      Additionally, per American Gastroenterological Association best practices, assess ferritin, Vitamin B12, Vitamin D, and additional nutrition labs as appropriate and particularly for any patient with weight loss.36

      Next, let’s discuss assessment of disease activity in IBD. Disease activity refers to how sick your patient is now, as compared to disease severity which references your patient’s disease course and prognosis.7

      Both UC and Crohn’s disease utilize standardized indices to evaluate disease activity, helping to inform treatment decision-making and disease progression monitoring.23,24 These assessments are also used in clinical trials.37 The Crohn’s Disease Activity Index, or CDAI, is a subjective tool that is often used in Crohn’s disease clinical trials to assess symptoms over a 7-day period. 

      [10:50]

      CDAI is calculated based on weighted scores that include number of soft or liquid stools, abdominal pain, general well-being, use of anti-diarrheal medication, presence of abdominal mass, presence of complications, and hematocrit.24 Other assessments of Crohn’s disease activity include patient-reported outcomes (or PRO), an assessment of the patients’ perception of disease burden and treatment effects,38 and Simple Endoscopic Score for Crohn’s Disease (or SES-CD), which is an endoscopic assessment of disease activity.24

      An example of an assessment of UC disease activity is the Mayo score.6 The Mayo scoring system, frequently used in clinical practice, integrates clinical parameters including stool frequency and rectal bleeding along with endoscopic findings to classify UC into mild, moderate, or severe disease. 

      [11:40]

      Additional assessments of UC disease activity include the Simple Clinical Colitis Activity Index (or SCCAI), the Ulcerative Colitis Endoscopic Index of Severity (or UCEIS), and patient-reported outcome 2-item (or PRO2), which is patient focused, and is derived from the stool frequency and rectal bleeding components of the Mayo score.6,23

      Let’s discuss endoscopy in more detail. Endoscopic examination with histologic confirmation is required for diagnosis of Crohn’s disease and UC, determining disease activity and severity, and (with subsequent examinations) evaluating treatment response.23,25 Endoscopic examination in Crohn’s disease includes several findings.4,39-42 

      These include patchy inflammation with skip lesions, which describes areas of inflammation adjacent to normal or unaffected mucosa (a hallmark characteristic of Crohn’s disease). Linear or longitudinal ulcers, fistulous orifices, stricture, or a cobblestone appearance may be other endoscopic findings in Crohn’s disease.24,25

      [12:40]

      These images represent ulcers of various sizes.43 The presence of ulcers is one element of the SES-CD, and is calculated based on ulcer size, ulcerated surfaces, affected surfaces, and narrowings, which are scored from 0 to 3 depending on extent in the terminal ileum, right colon, transverse colon, sigmoid and left colon, and rectum.24,43

      In Crohn’s disease, imaging studies such as computed tomography enterography, magnetic resonance enterography, and magnetic resonance imaging of the pelvis may play a complementary role in establishing the location, disease activity, and severity, as well as the presence of complications such as stricturing or penetrating disease, identifying abscesses, and mapping fistulas.25,44

      [13:25]

      Endoscopy findings are a component of the Mayo score, which measures UC disease activity and is graded as normal, mild, moderate, or severe.6 From left to right there are images of normal or healthy mucosa, to mild inflammation with a loss of vascular markings, to moderate inflammation with loss of vascular markings and friability, to severe inflammation with ulcerations and spontaneous bleeding.23 Another potential endoscopic finding is pseudopolyps or pseudopolyposis, a sequelae of inflammation.45

      Now, let’s discuss the evolution of IBD management. It’s important to understand that focusing only on symptom control fails to prevent disease progression, bowel damage, disability, and long-term complications.7 Furthermore, there is an emerging concept of early diagnosis and intervention in IBD.46

      [14:14]

      That brings us to the Selecting Therapeutic Targets in Inflammatory Bowel Disease, or STRIDE-II, guidelines, which focus on delaying or stopping disease progression and established a treat-to-target algorithm for using selected short-, intermediate-, and long-term targets for clinical practice.47,48 

      Once a therapy has been selected, the short-term target is clinical response, or a reduction in symptoms such as fewer bowel movements, less rectal bleeding, and less abdominal pain.48 Intermediate targets include clinical remission and normalization of inflammatory biomarkers (CRP and fecal calprotectin). Long-term targets consist of endoscopic healing, normalized health-related quality of life, and absence of disability.

      Additionally, it’s important to note that histologic remission in UC and transmural healing in Crohn’s disease are not formal treatment targets, but can be considered as adjuncts to endoscopic remission to represent a deeper level of healing.48

      [15:07]

      Now that treatment goals have been set, let’s discuss a brief overview of the IBD treatment landscape, starting with conventional therapies.49-57 The evolution of treatment focus beyond solely symptom control has resulted in changing patterns for use of conventional therapies for IBD, including 5-aminosalicylic acid (or 5-ASA), corticosteroids, and immunomodulators as monotherapy.7,24,58

      Let’s continue our overview of the IBD treatment landscape by looking closer at advanced therapies. Advanced therapeutics, which began to enter the clinic in the late 1990s, address specific targets in IBD immunopathology that are key to the mechanism of disease in IBD.52 Advanced therapies for IBD include anti-tumor necrosis factor agents, integrin receptor antagonists, interleukin inhibitors, Janus kinase inhibitors, and sphingosine-1-phosphate-receptor modulators.55,59-61

      [15:58]

      Please note, this is a high-level overview of these therapies, and the choice of a specific treatment for patients depends on balancing factors of disease prognosis, disease activity and severity, patient preference, the efficacy, tolerability and safety profile of the agent, and patient comorbidities.58

      Let’s review what we’ve discussed today.

      Inflammatory bowel disease is a chronic inflammatory disease affecting the GI tract.1

      IBD can present similarly to a wide spectrum of other diseases, so accurate diagnosis requires laboratory, clinical, endoscopic, histologic, and imaging assessments.3

      Heterogeneous presentation and severity of illness in IBD can contribute to diagnostic delay.7,14

      [16:42]

      Endoscopic examination with histologic confirmation is required for the diagnosis of Crohn’s disease and ulcerative colitis to determine disease severity, and (with subsequent examinations) evaluate treatment response.23,25

      And treatment management has evolved from centering only on symptom control to a combined strategy of symptom control along with normalization of biomarkers and mucosal and/or radiologic healing which can reduce disease progression, bowel damage, disability, and complications.7,48

      Thank you for your interest and for spending some time with IBDIQ today to help adapt to the evolving care needs of all patients with IBD.