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This article is sponsored by Takeda.
When I started in gastroenterology 19 years ago, I didn’t 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, affecting an estimated 3 million people in the U.S., and the numbers are climbing. These are not simple diagnoses. They don’t 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’s 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’s abnormal or when to seek help.
Other times, it’s 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 6 to 18 months before diagnosis. Despite this, only 5.6% of IBD patients were referred to a specialist within four weeks of presenting with chronic GI symptoms. A similar study found that 19% 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, emergency clinicians—anyone who’s likely to encounter a person with GI symptoms—should recognize red flags such as nocturnal stools, rectal bleeding, unexplained weight loss, iron deficiency anemia, and promptly refer for timely diagnosis, earlier treatment and management, and the possibility for a better trajectory for that person.
That’s 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 isn’t 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 5-year risk of colectomy was 18%—at 10 years, it jumped to 26%. 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’s 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’re 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, little to no insurance and the timeline to diagnosis and care may stretch even more.
It’s important that we screen for unmet social needs—such as the patient who is postponing follow up because they can’t 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’re 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, NP, 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.
References
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Transcript
Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. Subscribe at KevinMD.com/podcast.
Today we have a special sponsored episode from Takeda. We welcome Angelina Collins. She’s a nurse practitioner at a large tertiary inflammatory bowel disease center in California, where she specializes in IBD management and treatment. We’re going to be discussing evolving Crohn’s disease and ulcerative colitis care, and her journey and experience as a clinician treating patients with inflammatory bowel disease. Are you a health care clinician looking to increase your IBD knowledge? Visit ibdiq.com. That’s ibdiq.com, to continue to evolve your IBD knowledge for yourself and your patients. The link will be in the show notes. Angelina, welcome to the show.
Angelina Collins: Thank you so much for having me. I really appreciate it.
Kevin Pho: All right. So, tell me how you became a nurse practitioner who specializes in inflammatory bowel disease.
Angelina Collins: I think a little bit by chance. I started my NP career, obviously, in training, as many others do, in outpatient practice. I connected with a gastroenterologist, and that was about 20 years ago. I ended up training with him. It was a wonderful experience. We had a great connection, and I started in his community-based private gastroenterology practice. It very quickly became really apparent to me that our IBD patients, those who have Crohn’s disease and ulcerative colitis, really had a lot of unmet needs. And I just thought, “I can help take care of these patients, and I can help them in their journey and advocate for them.”
And so over time, I just tried to gain as much knowledge as I could. The more you gain, it’s like a rabbit hole, as you know, in many medical areas. The more you know, the more you want to know. And I was really ready to take that challenge on. So after 11 years in that practice, I was offered a position at a large tertiary care practice center specializing just in IBD, and I’ve been there for almost eight years now. All I get to do now is just, you know, focus on my passion, which is helping people with ulcerative colitis and Crohn’s disease.
Kevin Pho: All right. Fantastic. IBD is a progressive inflammatory disease that is unfortunately associated with a delay in diagnosis. Why is that?
Angelina Collins: I think there are probably a few different reasons. You know, one thing that can happen is that because the presentation of the diseases can be heterogeneous, meaning there’s not one particular thing that tells people, “Oh, this is the disease,” that can really cause some difficulties. One is that the people who are experiencing those symptoms may not really understand that this is something serious that needs to be managed, especially if it’s coming on intermittently, right? So if it’s a symptom that comes and goes, and then comes and goes again, but there’s time in between, it can be hard to really recognize that it warrants a further workup.
Sometimes what happens, too, is that often, before they’re diagnosed with ulcerative colitis or with Crohn’s disease, people may be seeing a primary care provider. Many people do. The primary care provider may not recognize some of those symptoms or may not send them off for a speedy evaluation with gastroenterology. So that can delay the diagnosis as well.
And then, you know, some people in different areas may not have access to a specialist, right? We know specialty practices are impacted. We know that it can be difficult to get to specialty care, and that can further the delays. And then the last one is really an overlap of those symptoms. Like I mentioned before, there is not one particular symptom that is automatically going to tell someone this is Crohn’s disease or this is ulcerative colitis. There are clues, right? But because there’s not just one symptom that you’re looking for, there’s an overlap between the symptoms of Crohn’s and ulcerative colitis and those of other, you know, disorders and diseases as well. And that can sometimes be vexing for people.
Kevin Pho: When it comes to IBD, what are some of the challenges you’re seeing in diagnosing Crohn’s disease and ulcerative colitis?
Angelina Collins: Yeah, that’s really a good question, because I think the challenges in diagnosing Crohn’s and ulcerative colitis really have to do with the fact that the symptoms are not the same for every person. I always say, and I’m sure you do in your line of work too, that no matter who we’re seeing, these are really unique people, and their presentations can be unique as well. And sometimes, as I mentioned, the symptoms can really be insidious. It may come on or evolve over time, and that can be a challenge.
There’s a group of people, too, who will have silent disease, so to speak, until the symptoms become really problematic. If that’s happening, they may have active inflammation, but they’re not really having a lot of noticeable symptoms until it really becomes a problem. And then, retrospectively, we sometimes understand that it’s really been simmering for a period of time.
Kevin Pho: So what do these challenges mean? Why does it matter for people living with Crohn’s disease or ulcerative colitis?
Angelina Collins: Yeah, I think that’s a great question. For people who are living with Crohn’s disease and ulcerative colitis, that delay in diagnosis can really be important. There’s leading information that tells us that early diagnosis, and early effective intervention as close to that diagnosis as possible, can really predict better outcomes long term. So that can have a significant impact.
And then there’s also just thinking about, you know, mental health, in thinking of somebody suffering with symptoms, not getting a timely diagnosis, and not knowing what’s causing those symptoms. I think that can be a real challenge as well, and it can lead to additional difficulties for that individual person, which can have an impact not only on their life and their quality of life, but on every other facet of life that their symptoms are really impeding upon and causing those challenges in.
So, absolutely. The other thing that happens, too, is that over time, if that diagnosis isn’t made early on, disease can progress. And if disease is going to progress, that can lead to additional complications. It could be a worsening or a more severe disease presentation that can lead to things like hospitalization, which obviously is a really significant outcome, and even lead to other types of disease complications, like strictures or fistulas, nutritional deficiencies, and iron deficiency anemia, all sorts of things that are included in the disease but that some people might think of, in some ways, as even peripheral to the disease. So I think those are all really important aspects, and that’s why timely diagnosis and really timely referral are so critical for ulcerative colitis and Crohn’s.
Kevin Pho: You’re listening to a special sponsored episode from Takeda. We’re talking with Angelina Collins. She’s a nurse practitioner at a large tertiary inflammatory bowel disease center in California, where she specializes in IBD management and treatment. Are you a health care clinician looking to increase your IBD knowledge? Visit ibdiq.com. That’s ibdiq.com, to continue to evolve your IBD knowledge for yourself and your patients. The link will be in the show notes. Angelina, what is the latest thinking on best practices to help close the diagnosis gaps, with a goal of earlier intervention?
Angelina Collins: I think one of the most important best practices to help close the gap from symptoms to diagnosis is really recognition of red-flag symptoms and getting timely referral to specialists. Because these are complex and chronic diseases that we don’t have a cure for, and the chronicity of the disease can lead to worse outcomes if not managed and treated effectively, it’s really important to think about those things where we might be including ulcerative colitis or Crohn’s disease in the differential. So things like nocturnal stools, rectal bleeding, unintentional weight loss, and anemia, particularly iron deficiency anemia, those would be things to think about as well.
Kevin Pho: Based on your experience, could expanding IBD knowledge among health care clinicians, particularly in diagnostic approaches, help close existing gaps?
Angelina Collins: In my experience, I think continuing to increase IBD knowledge among health care providers, especially in the important area of diagnostic approaches, can absolutely help close gaps in diagnostic practices and delays in care. So there are resources such as IBDIQ, Takeda’s project, which offers on-demand, web-based education at no cost, in collaboration with IBD specialists, to help health care providers at all experience levels.
I think the nice thing about this is that, being web-based, it really gives options, even for physicians, clinicians, and advanced practice providers in particular, you know, who are interested in learning more about IBD. And it’s done in self-learning modules, so they are small snippets of time that you can spend learning different topics. One of the topics I speak about covers in depth many of these that we’ve discussed in today’s podcast: the presentation of IBD, challenges of timely diagnosis, differential diagnoses, and approaches to IBD management as a whole. But there are several others, and it may be a great opportunity for people to dive into IBD.
Kevin Pho: What is the latest thinking on best practices when it comes to an appropriate patient care model?
Angelina Collins: I think for me, the patient care model ideally would first include a multidisciplinary team that has really in-depth knowledge of IBD. This doesn’t mean that each patient has to be cared for at a specialty or a referral center, especially keeping in mind that I started my, you know, GI practice in a large community-based practice. And I think wonderful care can happen everywhere, right? But what using a multidisciplinary team means in my mind is that, depending on where you are, you may have to create your own network of providers who are really knowledgeable and can help manage the varying challenges of IBD. So that can mean surrounding yourself with people who can really help the patient navigate, and not just those who are within your practice.
Thinking of the obvious types of things, you need a gastroenterologist. Of course, I think every team needs an advanced practice provider, you know, a nurse practitioner or a PA who specializes in IBD or has in-depth knowledge of IBD, for best care. But then you also need a nurse. You need a patient navigator, or someone who can help the patients get to medications or, you know, help them through the authorization processes. You need a pathologist who’s really a GI-trained pathologist, in my mind. Having a radiologist who’s really familiar with reading certain studies, like CT or MR enterographies, that are inherent to how we diagnose, and not just diagnose but also monitor and track disease progress over time. A surgeon that you can trust and can call on, and ideally even having somebody who is really knowledgeable about nutrition, so a dietitian would be fantastic. A pharmacist is really wonderful to help navigate. We’re lucky enough to have a pharmacist, a couple of pharmacists, in our practice, and that has really helped us quite a bit.
So again, it doesn’t mean that everyone’s sitting in the same room at the same time seeing patients. It means that these are people you’ve identified as your team players, and you can phone them. I call this “phone a friend,” for when you need to collaborate.
Kevin Pho: So I want to talk a bit more about the role of advanced practice practitioners in IBD care. The Bureau of Labor Statistics forecasts a 40 percent increase in the demand for nurse practitioners and physician assistants between 2023 and 2033. Going beyond the statistics, what is your perspective on the growing role of advanced practice practitioners?
Angelina Collins: I’ve seen a lot of, you know, increased changes and increased ability for APs to help with patient care since I’ve been a nurse practitioner, over the last, you know, 19 years. And I think it’s been wonderful, because APs have really demonstrated their knowledge and their ability to deliver high-quality, cost-effective care, and to be part of that team. And I think being recognized for their active roles in the management of patients is really important.
When it comes to GI, I think most practices have already embraced and integrated APs into their practices. So I think that has been a key driver of care and a key game changer where APs are being utilized. Often they’re in the clinic seeing patients, and often the gastroenterologist is scoping or performing procedures, which I think makes a lot of sense.
But the whole idea is to really embed this. I really see this as a team-based care delivery model, where you get the best out of it when the AP and the gastroenterologist have time together, you know, to talk, to review patients, to consider complex patient care, and things like that. And I think that’s a really important aspect of the collaborative approach to IBD. Really, I tend to think of IBD as a team sport, you know. There are a lot of different players that you need, and we can really deliver the best care when everybody is focused on the game of really helping our patients and advocating for our patients.
Kevin Pho: And my last question, Angelina. Let’s end with some take-home messages that you want to leave with the KevinMD audience.
Angelina Collins: So the messages to leave with, especially if we’re thinking about, you know, what we can all do to recognize Crohn’s disease and ulcerative colitis, I think, are about going back to those red flags. I’d really love for everyone to take away that if you’re talking with a patient and you’re wondering about symptoms or thinking about a differential diagnosis, and they have any of the red flags, if they have nocturnal bowel movements, if they are having rectal bleeding, if they have unexplained iron deficiency anemia, or if they have unintentional weight loss, I think those really need prompt referrals.
Kevin Pho: You’ve listened to a special sponsored episode from Takeda. Are you a health care clinician looking to increase your IBD knowledge? Visit ibdiq.com. That’s ibdiq.com, to continue to evolve your IBD knowledge for yourself and your patients. The link will be in the show notes. Angelina, thank you so much for sharing your perspective and insight. Thanks again for coming on the show.
Angelina Collins: Thank you, Dr. Pho.
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