SUMMARY
In this episode of Life Without Leaks, we’re joined by Dr. Ryan O’Leary, advanced fellow in inflammatory bowel disease, for a deep dive into inflammatory bowel disease (IBD).
Dr. O’Leary breaks down what sets Crohn’s disease and ulcerative colitis apart from other digestive conditions, explaining how IBD can affect patients at any age, from early childhood to later adulthood, and why diagnosis can sometimes be delayed. He explores the complexity of inflammation, the role of the immune system and how IBD can impact far more than the gut, including joints, skin, eyes and mental health.
The conversation also covers realistic treatment goals, the expanding range of medications available today, dietary considerations, when surgery becomes part of care and why personalized treatment plans are essential. Importantly, Dr. O’Leary addresses the emotional toll of living with a chronic condition and emphasizes the importance of persistence, advocacy and specialist care.
If you or a loved one is navigating unexplained GI symptoms or an IBD diagnosis, this episode offers clarity, reassurance and a hopeful look at what’s possible with modern care.
Learn more about a wide range of bowel conditions and get free resources here.
Transcript
The following transcript was generated electronically. Please let us know if you see any transcribing errors and we’ll get them corrected immediately.
Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org.
Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover, and joining us as always is Sarah Jenkins, the Executive Director for the National Association for Continence. Welcome, Sarah.
Sarah Jenkins: Thank you, Bruce.
Bruce Kassover: Yeah, today’s guest is a friend of the podcast. It’s Dr. Ryan O’Leary, and you may remember him. We spoke recently about bowel urgency, and today we’re going to be talking a little bit more in detail about IBD in particular. But before we did , a little bit of about Dr. O’Leary. He grew up in South Carolina before moving to Indiana where he studied economics at the University of Notre Dame, but then he’s returned to South Carolina to pursue a career in medicine. He completed his medical school and his internal medicine residency at the Medical University of South Carolina before starting as the advanced fellow in inflammatory bowel disease for the most recent academic year.
And he really is committed to delivering, you know, compassionate, personalized care to help patients really navigate the challenges of IBD and Crohn’s and Colitis. So, welcome Dr. O’Leary. Thank you for joining us again.
Dr. O’Leary: Thank you so much for having me, Bruce. I’m excited to be back.
Bruce Kassover: Yeah, we’re excited to have you because last time we started talking a little bit in detail about IBD, but we really wanted to focus on bowel urgency and that’s a little bit broader. We’re hoping we could learn and you could help us learn a little bit more specifically about IBD. So I’m wondering if you could sort of define IBD for us so that we can understand it as a distinct condition that’s not just sort of some vague, ” I have to go to the bathroom a lot” type of thing.
Dr. O’Leary: Absolutely. Yeah. This is my favorite topic, so I’m very excited to be discussing IBD. So IBD stands for inflammatory bowel disease and it encompasses two diseases.
One is Crohn’s disease and the other is ulcerative colitis. And these are diseases that affect about 1% of the general population. And now patients can get, can develop these diseases at any stage in life. Classically, we think of kind of two, two area, two times of life that are, that are most common to develop these disease diseases.
The first kind of, the first kind of peak is in the late, late twenties, and the second can be in middle age, kind of forties to fifties. But patients can develop these diseases at any, any time of life. So we have patients as young as one years old and as old as patients in their ni in their nineties, eighties and nineties.
Now, so it’s ulcerative colitis and Crohn’s disease and their chronic inflammatory bowel conditions of the bowel and they can affect ulcerative colitis tends to only affect the, the colon or the large bowel, and it can affect different extents. So in some patients it just affects the rectum. In other patients, it affects the entire large bowel.
And then Crohn’s, Crohn’s disease classically can affect any of the part of the bowel from the mouth to the anus. And there’s overlapping treatments for this, for the diseases, but there are some medicines that can only be used for one disease. And the disease diseases have an overlap in symptoms, and this can include a variety of things from diarrhea, abdominal pain, weight loss, blood in the stools, and even some upper GI symptoms, nausea and vomiting. So they’re, they’re very interesting diseases. And it’s what I do, it’s what I do for, for work. So I do do it every day and I love taking care of these patients.
Sarah Jenkins: Yeah, that’s great. And I’m sure that they appreciate all the help and service that you provide to them. One thing I wanted to ask that you mentioned is that there’s these two kind of age ranges where patients can be diagnosed. What are the challenges with each one? I mean, it’s a hard diagnosis for anyone, but I can imagine being a younger individual and receiving this might present its own unique challenges versus someone who’s a little bit later in life. Do you have any insights or stories about that?
Dr. O’Leary: Yeah, certainly, certainly. So in our younger, in our younger patients with IBD, the FDA has a certain, there are a variety of medicines that are approved for IBD and there’s cer certain ones that are only approved in adults.
And so that’s, I think one of the first challenges of our pediatric patients with IBD is you have less kind of available medicines to you. In general, young patients with IBD tend to have more severe manifestations. And so that’s another thing to note too. And then there’s unique challenges in our older population as well.
Our older patients with IBD, we have to take a lot of things into consideration when managing their IBD, like they tend to have other medical problems that can complicate their IBD and then we also know that older patients with IBD tend to be at higher risk for infectious complications with certain, some of our medicines.
So we have to be very mindful about the patient’s age, and kind of coming up with a personalized treatment plan for their IBD.
Sarah Jenkins: Yeah, I can imagine that can be really difficult. So what are the percentages? I think it, you said that younger people they tend to be diagnosed more than when you’re older. So, what’s the breakout of that? Do you know?
Dr. O’Leary: Yeah, I, I don’t, not sure about the exact numbers, but in general, when we think of a bimodal distribution, meaning that there’s, if you, if you look over a lifespan, there’s kind of two peaks in the incidence of IBD, the first one kind of being like around like the twenties, the second decade of life and the second kind of increased the second peak, or increased time of prevalence is in middle age.
Sarah Jenkins: Okay. So I can imagine that pediatric patients who are diagnosed probably are excited actually to get to the point where they can use some of these meds that can make a real difference for them.
Dr. O’Leary: Yeah, definitely. And that’s another really important thing in the IBD world is the transition of care. ‘Cause patients, a lot of patients that are diagnosed when they’re, when they’re children will, you know, eventually they’ll eventually, since it’s a chronic condition, they’ll eventually graduate to coming to our clinic, could be where we take care of adult patients. And so that transition is very important too.
Sarah Jenkins: Can you talk a little bit about what that looks like?
Dr. O’Leary: Yeah, I mean, I think it’s, I think one of the things that we talked about is that there’s more medicine options for the adult patients. And then another kind of aspect of that is us having a good handoff for the patient’s pediatric gastroenterologists.
So understanding as much as we can about their disease course, about, you know, their prior treatment history about if they’ve had complications related to their IBD. So. If there’s a, it’s very important that we have a good, you know, transition of care to the pediatric world. And I think another thing that can be challenging for patients that were diagnosed young is, you know, transitioning from pediatric care… A lot of them will have their, their parents very involved in their care, and then when they come to the adult world, they’ll, they’re going off to college, they’re getting jobs, they’re becoming more independent. And I think, with that comes, you know, kind of an ownership of taking care of their own health and like understanding, living, like living with IBD and taking care of their own medicines, and I think that’s a really important part of the transition, too.
Sarah Jenkins: Yeah. That brings a whole ‘nother meaning to just growing up, right?
Dr. O’Leary: Yeah, exactly.
Bruce Kassover: Related to that, you were talking about how it’s a chronic condition and, you know, you could have it for, you know, a lifelong , maybe this is a, I’m wondering is it something that can be cured? Is there, an end point for some people? Or is this something that, that people will just have to learn to manage for the rest of their lives?
Dr. O’Leary: Yeah, unfortunately we don’t have a cure yet for inflammatory bowel disease. There’s certainly been a lot of development and a lot of research on, on the, the prevention of inflammatory bowel disease and understanding the factors that may lead to these, these these diseases of developing.
And so there’s been a variety of research on anything from like the microbiome, which is the kind of natural flora or bacteria that live in our gut, to diet, to they’ve studied to see if life stressors or certain, you know, exposures can lead to the development of these diseases. So lots of, lots of research on the, prevent the prevention of it, but unfortunately not yet a cure for patients.
Bruce Kassover: So what is science telling us are the likely, sort of, culprits behind some of this then? Do we have pretty good leads?
Dr. O’Leary: Yeah, I mean, they’ve, they’ve studied, they’ve studied a lot of different things. So, diet has been an area of particular interest and it’s, it’s difficult… It’s difficult developing studies on diet.
They have to look at large cohorts like of patients and try to try to study dietary patterns like on the country or like the very large scale level. And so there’s been some developments in risk factors for developing IBD for example. They’ve found that patients with low, low levels of fiber in their diet have higher levels or higher risk of developing IBD or patients that have high or populations that have, that eat more red meat are at higher risk of developing IBD. There’s been a lot of studies on the microbiome, and if there’s, is there a certain kind of signature or type of bacteria or combination of bacteria that can lead to IBD?
And that’s an, you know, we’re, we’re not sure. It’s an area of, of kind of like active research and we know that be the, the time period before patient develops IBD, they’ll have a distinct change in their microbiome or the bacteria living in their gut. And so that’s been an area of, of interest for a lot of people in the prevention of IBD.
And then we do know that, you know, if you have a family member or a direct relative with that has one of these conditions, Crohn’s or ulcerative colitis, that you’re at higher risk for developing IBD. So it’s a complex interplay of our body’s immune system, the microbiome exposures, and genetics and our family history.
Bruce Kassover: That makes a lot of sense. And I’m sure that, you know, people are actively working on trying to, you know, get to the bottom of this. So if I go in though for treatment, what are the realistic goals for treatment today? What sort of can I be hoping for?
Dr. O’Leary: Yeah. So for our first goal of treatment is we want patient to feel better. And so, so the vast majority of patients with IBD are diagnosed after they develop symptoms. And it can be a variety of symptoms like we kind of discussed earlier. So it could be unexplained weight loss, diarrhea, loose stools, fecal incontinence, waking up at night to have bowel movements, blood in the stools.
Patients with Crohn’s disease can have. Have complications called fistulas, which are kind of abnormal tunnels from part of the GI tract. And so that can lead to symptoms like having kind of drainage by the peri recal area. And so there’s a variety of symptoms kind of GI and the interesting thing about IBD is there’s also something called extraintestinal manifestations, which can, which can encompass a variety of organ systems. So patients can have distinct rashes that are related to IBD. They can have eye manifestations that are related to their IBD and they can even have things like worsening of joint pains. We call this like “IBD associated arthropathy.” So it’s a variety of symptoms and so that’s our first goal of treatment is getting your symptoms better ’cause the vast majority of IBD patients are asymptomatic or are symptomatic. So that’s goal one. And for, for the vast majority of our patients, we can get them great relief with our, with our current medicines in our toolbox. And then the second goal of treatment in IBD is inflammatory bowel disease is an inflammatory condition.
So when you do a colonoscopy or you take a look at the GI tract from the inside, you’ll see inflammation of, of different parts of the GI tract. And that’s our, that’s our second goal of treatment is to reduce or eliminate that inflammation and we call that ‘remission.’ So we want a patient to be in clinical remission or in symptomatic remission, meaning their symptoms are better. And then we also want them to be in endoscopic remission, meaning when you do a colonoscopy, the area of the GI tract that is affected by IBD is healed. And the reason that’s important is we know that patients, when they have healing from the inside of their GI tract, they’re less likely to develop complications from their IBD like needing surgery. There’s a increased RI risk of colon cancer in, in some of our IBD patients. And so that is the second kind of component of of our goal as a treatment.
Bruce Kassover: And is it realistic to think that you can enter into a period of remission for a long period of time?
Dr. O’Leary: It is. Yeah. We certainly have patients that are in remission for years and even decades. And the challenging thing with IBD is, is every patient is different. And I think it’s one of the exciting things as a clinician is you really have to treat the patient as an individual. And so one medicine that works for one patient may not work for another patient and. For some patients, the first medicine works great and they’ll be in remission for years or even decades.
And for some patients, other patients they have the first medicine doesn’t work well and they have to try different medicines. So the disease course is unique for everyone, but we, we certainly have a variety of patients that we see in clinic that we see once a year that have been doing really well on a me, on a single medicine for years.
Bruce Kassover: I wanted to ask you about medications, because it seems like if you were to take away pharmaceutical advertising from television, the entire, like media world would collapse because every third commercial, every second commercial is something for somebody with Crohn’s or ulcerative colitis or something… What sort of medications are available today?
Dr. O’Leary: Yeah, so there’s a, like you said, there’s a variety of medicines. Just turning on the television, you’ll probably, you’ll see a couple. So we know the first thing when choosing a medicine that’s right for the patient.
The first thing is, you know, there’s a lot of things that we take into consideration. So first is the severity of their IBD. And we kind of grade that there’s different grading scales that are based off objective measures and patient symptoms. And so we grade that into mild, moderate or severe. And we treat, we treat patients with, you know, if with severe disease, different than we treat patients with mild disease.
So to take, to take ulcerative colitis for example. There’s some patients that have such severe disease that they’re, that they’re getting hospitalized, that they’re needing IV steroids. And that’s a very different situation than a patient with ulcerative colitis that has mild disease in the rectum that can do very well as an outpatient with, with medicines that we call mesalamine type medicines.
So first we under, you know, we have to think of like what the severity of their disease is. And now for, for patients with more severe disease, there’s a variety of tools in our toolbox now. So we, they’re medicines called biologic medicines or small molecules that have revolutionized the way that we treat IBD.
So the first medicine that came around that many people know of is infliximab, or people know the generic name, Remicade. And it came out in 1998 for IBD. And we still use, we still use Infliximab quite a lot, but now the, our, our tools in our toolbox has expanded dramatically. So Infliximab, for the most part is IV formulation, but now we have medicines that are pills that patients take every day to control their IBD.
Some are are subcutaneous shots that they take every couple of weeks or sometimes every eight weeks to control their IBD. And so we take a lot of things into consideration. Patient preference for the route their, their disease, and also some of their underlying medical problems.
Because sometimes these medicines can help other conditions if they have autoimmune, comorbid autoimmune conditions like rheumatoid arthritis or psoriasis. So we have lots of treatments, options for patients, and the first one, you know, the first ones is, works for some patients and doesn’t for others. But the great thing is we have so many tools in our toolbox now.
Bruce Kassover: That’s very encouraging. I love hearing that. But you know, I think we all know that. Sometimes medication, all the different types of medications, they are not always successful for the same person, or somebody may have a condition that’s, that is, is more advanced than medication can handle. So beyond medications, what sort of treatments might a patient encounter?
Dr. O’Leary: Yeah. Yeah. So, you know, a lot of our patients ask us about diet, ’cause I think there’s patients that are, there’s a, there’s a lot of patients that are interested on making dietary interventions to try to control their IBD and what the, what the, what the research shows in what we recommend for most of our patients is, is uptake do eating a, in a Mediterranean type dietary pattern.
So it’s something that has been studied in a variety of diseases ranging from cardiovascular disease to IBD. And that can, that can certainly, certainly help as a healthy diet, but by itself cannot control under the underlying IBD. Patients will ask about that. There’s some kind of integrative or alternative medicine options for IBD that have shown some efficacy in IBD. Curcumin is, is one of them in ulcerative colitis that we use for some patients that are looking for medication sparing strategies. And then a very good important component in, in IBD care is also, is surgical interventions. So our goal of medicines is to, to try to avoid surgery and surgical interventions, but for the right patient surgery can be very life changing.
It can, can, can really help their symptoms tremendously. And so we work very closely with our colorectal surgeons on identifying patients that we think could benefit from surgery. And there’s a subset of patients that fail medical therapy that re really surgery can be quite. Life changing and life saving.
Bruce Kassover: I would imagine that, you know, considering how life limiting it can be to have, you know, one of these conditions that your surgery, if that’s your only option, it really could, you know, restore a lot of the freedom and confidence that you didn’t have before, but I think one of the challenges is that I don’t wanna see you.
And I think a lot of people don’t wanna see it because the idea of having to go and talk to a stranger about all this embarrassing stuff and potentially have to face things like surgery is just a terrible idea. And I’d rather suffer. Now, certainly, people who are, you know, whose conditions are so bad that, you know, they can’t go outta the house, et cetera, you know, they’ll come to you because they have no other choice.
But for somebody whose symptoms might not be quite so extreme, what can you say to help me realize that, “Yeah, I really should go see a doctor”?
Dr. O’Leary: Yeah. Yeah. So I, I, you know, I, I think first off is we, we love taking care of IBD patients, and at MUSC we have something called a IBD Medical Home. And what that means is that, is that we’re here, we’re here for you.
Like we, we treat patients as family. So, so if they come, when they come to a visit. They see, a variety of team members. They see friendly nurses. They see me, a fellow, other doctors. They, we have, we have them talk to our social worker that helps them with the kind of psychosocial component of IBD.
And so, while some patients that are new to IBD or like are understandably hesitant to talk about a sensitive topic such as like bowel habits and things once they start to. Start to get to know us. Like they really, I think, appreciate coming to us. And so I would, I would say that that, you know, it can be tough at first, but we’re really here to support you in any way we can.
And, you know, sometimes, or oftentimes we help patients even with, with non GI related issues. And so I would say that, you know, that we’re here to support you. And, and then another thing that I would say is, you know, if you’re on the, if you’re in the camp of mild symptoms, I would say there are, there’s a subset of patients with IBD that have like, kind of silent IBD.
So particularly in patients with Crohn’s disease of like the, the small bowel or the ileum, they can have, they can be less symptomatic. But there can be kind of severe inflammation going on. Without severe symptoms. So I think it’s very important for patients to be proactive about treating their IBD.
So even if they’re feeling well now, we want to follow them closely and we want to control their disease so we can prevent complications from occurring in the future.
Bruce Kassover: That’s really interesting when you take into account that you could have a silent condition or you could have those, you know, other manifestations like eyes and joints and things.
It really sounds like it’s not the sort of thing, even if you know you’re having, you know, bowel issues that you could diagnose yourself, you really do have to have a professional diagnosis. Is that fair to say?
Dr. O’Leary: Yeah, yeah, certainly. Certainly. IBD is such a difficult disease to diagnosis, to diagnose because it’s not, it’s not as simple as like a blood test or a image.
You have to take so many things into consideration, including patient’s symptoms, blood tests, imaging, colonoscopy. So it really, it really takes an ex, an expert diagnose and to treat these conditions.
Sarah Jenkins: So I have another question just following that. You know, we hear and have talked to patients about how long it does take to receive a diagnosis because of all the reasons you just said that it could be a number of different symptoms that presents differently in everyone. What would your advice be to someone who is really struggling and is experiencing some of these symptoms but is still struggling to get a diagnosis?
Dr. O’Leary: Yeah, I mean it’s, it’s definitely a common situation that we see and the, the patient that has kind of suffered from GI complaints for, for years before coming to a diagnosis. And it can be a challenging diagnosis to come to, and oftentimes patients can be misdiagnosed before they can be diagnosed as irritable bowel syndrome or which is a non-inflammatory condition of the, of the gut. That is quite common. Much more common than IBD.
So I would say, you know, for a patient that’s kind of hasn’t yet had a diagnosis, I would, I would continue, you know, seeing your doctor. I think it’s, it’s fine. It’s, I think you should be persistent. I think getting a diagnosis can be very can give a patient a lot of relief.
Beause, because then you can, like, you can learn about your disease, you can get on proper treatment. So I would say, you know, continuing to see your doctor and it’s also fine to get a second opinion or to see another doctor. And certainly something that we encourage from, you know, patients that are kind of struggling to get a what they feel like is a proper diagnosis.
Sarah Jenkins: Yeah. And, and if they haven’t gotten a referral to a specialist, it sounds like that’s something that they should also push for to really get those more extensive tests done and hopefully a quicker time to, to actually getting a diagnosis.
Dr. O’Leary: Definitely.
Sarah Jenkins: Great.
Bruce Kassover: You know, there’s a question I wanted to ask, and I know this is, is probably going to sound like a dumb question, but from a medical perspective, could you tell us what exactly is inflammation in the first place?
Dr. O’Leary: Yeah, inflammation, so inflammation involves our immune system.
So our immune system is made up with a variety of different cells. And it’s essentially, the point of the immune system is to identify self versus non-self. So self being your own body, your own body’s organ systems, and non-self being like an infection or a bacterial infection or something that your body should mount against.
And so the way that inflammatory bowel disease develops, and one of the kind of mechanisms behind it is the body is recognizing the parts of the GI tract as non-self. And it is mounting a inflammatory response against our own body and our own organs. And so that involves kind of certain molecules called interleukins, which kind of, which are like cell, parts of the immune system, that kind of a attack our own body’s like GI tract and GI system. And so the basis behind a lot of the medicines that we use that we discussed earlier, like the biologic medicines and the small molecules is they interact within our body’s immune system to try to block that response in different, pathways and different steps of it. So that’s kind of, you know, what it means to have an inflammatory condition and like what is kind of going on in a patient with IBD.
Bruce Kassover: I guess that’s why you have those, all sorts of what might seem like unrelated manifestations are actually sort of all different symptoms of inflammation.
Dr. O’Leary: Certainly, certainly.
Bruce Kassover: I guess that’s also why the same medication might treat other things that you don’t even realize it’s going to be treating when you’re taking it.
Dr. O’Leary: Right, right, exactly. And it’s also the mechanism, the proposed mechanism behind why, why patients with IBD are more likely to have like depression and anxiety because, you know, those conditions are also, there’s also a hypothesis that they’re related to inflammatory, inflammatory conditions in our body’s own immune dysregulation. So it’s, it, I think is certainly the, the explanation behind the IBD itself and then what we call the extraintestinal manifestations of IBD.
Bruce Kassover: Well, that’s really interesting. Although I’d imagine that the symptoms alone are probably enough to cause depression. And we know that patients are often, you know, they do often have to struggle with, you know, self-image and things like that. If the inflammation itself only compounds things, that’s got to make it particularly difficult to deal with, you know, deal with it from a mental health perspective.
Dr. O’Leary: Certainly, certainly. And it’s something we see commonly in our, in our patients. I think, like you said, part of it is like struggling with living with a chronic condition and the impact that has on your life, be it work, like personal relationships, like studies.
And so that’s certainly a component of it. Another component is like the, the inflammatory, the actually inflammatory response and like that being tied to, like, depression and anxiety. And it’s a very important thing that we, that we, that we ask our patients about and that we treat as well, like through a variety of mechanisms.
We obviously wanna get the IBD under control and the inflammation under control, but we also really support patients in like in going to see counseling and trying medicines for depression and anxiety. And this kind of multimodal approach is, patients really appreciate it and they get, and they have great outcomes with it as well.
Bruce Kassover: Well, great outcomes is what it’s all about. So I’m really glad to hear that. And as you know, from past experience, this is Life Without Leaks. It’s a podcast about helping people live a life without the challenges of incontinence.
And we always like to leave our listeners with one little hint, tip strategy, bit of advice for them to live a life without leaks. So maybe you have one you can share with us today for those who are struggling right now with IBD or a similar condition.
Dr. O’Leary: Yeah, certainly. So, you know, if I were to leave you with one kind of one message is that there’s really hope in getting your IBD under control.
So living with IBD is a, it’s a windy road of ups and downs and we’re, our team is here to help you with that. To support you through that and that, you know, patients really live very full and flourishing lives with IBD and that’s, that’s where most of our patients are. But we also are here to help you through the down times. But there’s, there’s great hope and that we’re continuing to learn more about the disease and how to prevent, treat it and hopefully one day cure it.
Bruce Kassover: Well, that’s really encouraging to hear and I hope that our listeners take it to heart. So thank you very much for sharing your insight and for joining us today.
Dr. O’Leary: Yeah, thank you so much, Bruce and Sarah. I enjoyed it.
Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.
To learn more about the National Association for Continence, click here, and be sure to follow us on Facebook, Instagram, Twitter and Pinterest.
Music: Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/
