This article is sponsored by Takeda.
When I started in gastroenterology nineteen years ago, I did not imagine my professional journey would lead me to specialize so deeply in inflammatory bowel disease (IBD). But once I began caring for people with Crohn’s disease and ulcerative colitis, I found myself drawn in by the complexity of these conditions and the resilience of the people who face them. IBD is a chronic, progressive set of diseases that include Crohn’s disease and ulcerative colitis and affect an estimated 3 million people in the U.S., and the numbers are climbing. These are not simple diagnoses. They do not follow neat clinical patterns. They can present differently in each person, progress unpredictably, and may involve organ systems beyond the gut. Crohn’s disease and ulcerative colitis challenge our assumptions and test our capacity as health care providers (HCPs) to think critically, act early, and deliver not just care, but advocacy. I have been fortunate to have had wonderful mentors, both early in my career in a community-based gastroenterology practice and since mid-career at a tertiary referral IBD center. My mentors, along with my patients, have grounded me in the belief that to fully care for patients with IBD, we must stay relentlessly curious, compassionate, and committed to expanding our knowledge.
Diagnostic delay: one of IBD’s persistent challenges
One difficult aspect of IBD care lies in the diagnosis itself. Misdiagnosis or missed diagnosis remains a challenge. There is no single test that definitively identifies Crohn’s disease or ulcerative colitis, and symptoms often overlap with other gastrointestinal conditions. The reasons behind diagnostic delays are layered. Sometimes it is lack of awareness by patients or by providers. People with symptoms may not be aware of Crohn’s disease or ulcerative colitis and may delay care by misattributing or downplaying symptoms. Many normalize their symptoms, prioritize other responsibilities, or hesitate to discuss bowel issues, especially if unsure about what is abnormal or when to seek help. Other times, it is challenges with access to specialty care, even among those who recognize that their symptoms require medical attention. For example, according to the health records from a large, primary care research database in the United Kingdom, compared to matched controls, patients ultimately diagnosed with Crohn’s disease and ulcerative colitis were four times more likely to visit their primary care physician for GI symptoms six to 18 months before diagnosis. Despite this, only 5.6 percent of IBD patients were referred to a specialist within four weeks of presenting with chronic GI symptoms. A similar study found that 19 percent of all IBD diagnoses were made after a patient presented to an emergency department. In some cases, the absence of a clear diagnostic algorithm contributes to diagnostic delays. Diagnosis often involves clinical history, blood work, stool tests, endoscopy, histology, and imaging, all interpreted together in context.
IBD knowledge is key
This underscores why strong IBD knowledge for all health care professionals, not just those in gastroenterology, is critical. Primary care providers, urgent care providers, and emergency clinicians, anyone who is likely to encounter a person with GI symptoms, should recognize red flags such as nocturnal stools, rectal bleeding, unexplained weight loss, and iron deficiency anemia, and promptly refer for timely diagnosis, earlier treatment and management, and the possibility for a better trajectory for that person. That is where programs like IBDIQ, part of The IBD Project, can be helpful (please note, no continuing medical education credits are offered through IBDIQ). Developed by Takeda in collaboration with IBD specialists and created for health care providers, IBDIQ is an on-demand educational platform, available at no cost, that offers timely, relevant information tailored to today’s IBD care landscape. IBDIQ modules are presented by IBD specialists and cover a wide range of topics, including:
IBD fundamentals
- Diagnostic, Prognostic, and Monitoring Approaches in IBD
- IBD Treatment Landscape
- Psychosocial and Behavioral Aspects of IBD Care
- IBD Care Across the Lifespan
- Nutritional and Dietary Aspects of IBD
A progressive disease demands a proactive care model.
IBD is not static. Left unchecked, and even without symptoms, inflammation can worsen, and complications can occur, making timely diagnosis and intervention not just a goal, but a necessity. Care models have evolved to a proactive “treat to target strategy” where goals are defined, routine monitoring and re-assessment occurs (even in the absence of symptoms), and if signs of inflammatory disease re-emerge, optimization or changes are implemented. Successfully doing this requires collaboration between gastroenterologists, advanced practice providers, nurses, pathologists, radiologists, and dietitians, in addition to maintaining space for patients to be actively involved in shared decision-making.
Early intervention makes a difference. Untreated and under-treated inflammation can progress and lead to significant complications and irreversible bowel damage. In Crohn’s disease, for example, a meta-analysis of 44 population-based cohort studies, found that the five-year risk of colectomy was 18 percent; at 10 years, it jumped to 26 percent. And the damage is not just physical. Patients with delayed care often report higher rates of anxiety, depression, and fatigue. This is why shared decision-making and coordinated, comprehensive care are best practices.
The growing role of advanced practice providers (APPs) in IBD
Today, APPs play a critical role in delivering that coordinated, comprehensive IBD care. We often see patients in clinic, interpret diagnostic data, initiate therapy, manage side effects, and, perhaps most importantly, serve as consistent points of contact for those with IBD. APPs also play an important role when it comes to education, both our own and for those with IBD. IBD extends beyond symptom management and for people with IBD it is important to understand how the disease may impact other organ systems, fertility, nutrition and long-term health to name a few. Being that steady presence and helping people navigate all these aspects is a privilege and a responsibility.
Equity, access, and whole-person care
Even with medical advances, access to care remains a persistent barrier. Social determinants of health, like transportation, income, language barriers, and health literacy, may affect who gets seen, when, and how well they are able to follow through on care. In IBD, these barriers can be particularly damaging. Delays in diagnosis are already a concern; add challenges such as transportation difficulties, lack of child or elder care, and little to no insurance and the timeline to diagnosis and care may stretch even more. It is important that we screen for unmet social needs, such as the patient who is postponing follow up because they cannot take time off work, or who may not be able to afford medication, or who need extra help navigating and managing advanced therapies, advocate for patient navigators and connect our patients to services that support their full well-being. IBDIQ includes a module specifically dedicated to social determinants of health, which highlights how these factors intersect with IBD care and what can be done to address them in a meaningful, actionable way.
Staying sharp in a shifting field
IBD care is rapidly evolving. From novel therapies and biosimilars to changes in clinical guidelines, the landscape is dynamic. Staying current is essential. I encourage colleagues at all stages of their careers to stay engaged with their education whether through conferences, journals, mentorship, or on-demand tools like IBDIQ. I contributed to one such module myself, focusing on diagnostic strategy and disease presentation, because I know how valuable these resources can be, especially for new APPs navigating IBD. Continuous learning helps us best care for those who need it.
Looking forward
As I reflect on what it takes to do this work well, it comes back to staying committed. Committed to being curious, committed to listening, committed to learning and committed to showing up and meeting those with IBD where they are. If you are a health care provider looking to grow, I encourage you to keep going. Ask questions. Explore new resources. Seek out perspectives that challenge you. The more you learn, the more you can offer, and in IBD care, that can make all the difference.
Angelina Collins, MSN, ANP-BC, is a clinician at a large tertiary inflammatory bowel disease center in California, where she specializes in IBD management and treatment. She is a paid consultant for Takeda. All opinions expressed are those of the health care provider.
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