IBD 101: Getting to the Bottom of Inflammatory Bowel Disease Featuring Katie Dunleavy, MB, BCh, BAO - About IBD Podcast Episode 183

We get back to the basics of inflammatory bowel disease (IBD), including the differences between Crohn’s disease, ulcerative colitis, and how IBD is different than irritable bowel syndrome (IBS). IBDologist Dr Katie Dunleavy explains common symptoms, the diagnostic process, and treatment options, focusing on patient advocacy, regular screenings, and open communication with physicians and other healthcare providers. Also included is the importance of diet, stress management, second opinions, and multidisciplinary care in managing IBD. If you or your loved one lives with IBD, you will learn something new, and if there’s someone in your life who could use help in understanding IBD, this is the episode to share with them.

Transcript

[MUSIC: Digest This Beat]

Amber Tresca 00:00:05 I’m Amber Tresca and this is About IBD. I was diagnosed with ulcerative colitis as a teen and had pouch surgery ten years later. Today I help people with Crohn’s disease and ulcerative colitis understand their disease and feel seen. About IBD is real talk on symptoms, treatment and life with IBD straight from patients, caregivers and experts. You’ll learn, feel less alone and have a laugh along the way.

This episode is sponsored by Connecting to Cure. Connecting to cure is a nonprofit whose mission is to accelerate research, amplify awareness of Crohn’s disease and ulcerative colitis, and connect and support the inflammatory bowel disease community.

You can find them at Connecting to Cure.org, and I am so grateful for their support.

Amber Tresca: Dr Katie Dunleavy is a gastroenterologist based out of Boston. She has a B.A. from Middlebury College in operatic performance, but pivoted to medical school at the Royal College of Surgeons in Ireland. She completed a gastroenterology and an advanced IBD fellowship at the Mayo Clinic in Minnesota, where she focused on becoming an expert clinician, educator, and researcher.

Amber Tresca 00:01:26 Dr Dunleavy. Welcome to about IBD.

Katie Dunleavy, MB, BCh, BAO 00:01:29 Thank you. Amber, I’m so excited to be here.

Amber Tresca 00:01:31 Me too. This is a topic that I have not really covered on this show, even though I am over 150 episodes in. And that is the basics of inflammatory bowel disease. I think even for people who’ve been diagnosed for a while, it’s good to have a refresh because the medical community is always uncovering new things about these diseases. And so to that end, I’d like to start right at the beginning. Dr Dunleavy, what is IBD and how is it different from something like irritable bowel syndrome or IBS?

Katie Dunleavy, MB, BCh, BAO 00:02:07 I love that we’re going back to basics. I actually try to assess this with every patient when they walk through my door, because people have access to information from all sorts of places. And so whether you’ve been newly diagnosed or had your disease for a long time, sometimes the information that you have may be different from how we talk about it today. So I think getting on the same page in terms of what we’re talking about is the best first step, talking about inflammatory bowel disease.

Katie Dunleavy, MB, BCh, BAO 00:02:36 It is a chronic condition where the immune system mistakenly attacks parts of the digestive track. So that means inflammation. And over time, that inflammation can lead to some complications or damage. When we talk about inflammatory bowel disease or IBD, we typically refer to our two main categories of Crohn’s disease or ulcerative Of colitis. Irritable bowel syndrome, or IBS, which sounds too alike to IBD in my opinion, is a is a very different condition. It’s what we refer to now as a disorder of the gut brain interaction. So what this means is that the way that the gut and the brain communicate is a little bit dysfunctional. And so how you feel, your gut, how things move, can cause symptoms like constipation, diarrhea, bloating. But the main difference is that there is no inflammation in patients who have irritable bowel syndrome, whereas inflammation is the mainstay in IBD. I will say that understanding this difference is really important, because misdiagnosis in either direction can cause havoc on a patient’s medical journey, but also on the treatment they may receive.

Katie Dunleavy, MB, BCh, BAO 00:03:49 So, for instance, if someone is misdiagnosed with IBD when they actually have something else. So mimicry of disease like an infection, celiac disease, or even something like colon cancer that can actually delay their further treatment for their real disease. And sometimes even starting immunosuppressive medications can worsen their course. While, on the other hand, if a patient is told that they have irritable bowel syndrome, but in reality they have inflammatory bowel disease, they may go untreated for some time so that inflammation can smolder and unfortunately, can develop complications. Things like strictures or fistulas and Crohn’s disease, or even things like progressive inflammation, leading to make it harder for us to treat our patients when they finally get to our office. And so really, it’s important for us to get the diagnosis correct from the start. And that’s why I encourage patients to really work on that aspect of their journey first. So when I see a patient, that’s always the first thing I do is confirm that we’re all talking about the same thing and that from that index colonoscopy, which is what we refer to as your very first scope, where there was evidence of inflammation or not.

Katie Dunleavy, MB, BCh, BAO 00:05:00 We like to be sure that the pathology and the endoscopy, meaning what we see with our eyes, matches the clinical picture.

Amber Tresca 00:05:07 Thank you so much. That was so succinct and perfect. I love it that it is so helpful. It is going to help a lot of people to understand the differences. And so as you mentioned, IBD encompasses Crohn’s disease, ulcerative colitis. Then we also have that indeterminate colitis, those poor people that sometimes go back and forth or we’re not really sure which form it is. Can you break down the differences between these different modalities of IBD?

Katie Dunleavy, MB, BCh, BAO 00:05:35 Definitely. So it can get confusing. And so I will say that when we talk about IBD, we typically are talking about ulcerative colitis or Crohn’s disease. But there are other subsets. So to start. Ulcerative colitis is really when there’s inflammation that mostly affects the inner lining of the colon. So that’s the mucosal layer the top lining. So thinking about scratching the surface. And that can be anywhere from the rectum to the end of the colon.

Katie Dunleavy, MB, BCh, BAO 00:06:01 And sometimes in patients if there’s a huge amount of inflammation, it can even go slightly beyond the colon into the small bowel. And we call that backwash inflammation or itis. That’s not the majority of patients though, really. Ulcerative colitis is occurring in the colon, whereas Crohn’s disease you may have heard this before. It can occur anywhere from the mouth to the anus because that’s how our GI tract is lined. And what this means. And what we typically see is the inflammation. Unlike ulcerative colitis, where the inflammation typically starts in the rectum and then can progress all the way around the colon. For Crohn’s disease, it can start anywhere and it can do anything. So it tends to be patchy in some situations. If the inflammation is there for a longer period of time, it can create what we call scar tissue or fibrous genetic disease, meaning that you’re prone to getting obstructions or narrowing in the small bowel or colon. And the main difference when we talk about types of Crohn’s disease is not just how it behaves.

Katie Dunleavy, MB, BCh, BAO 00:07:03 So if it’s inflammation or if it’s the narrowing or structuring subtype, or if you’re someone who may develop a fistula, which means an opening between two surfaces if the inflammation has gone deep. But we also talk about where it is. So about a third of patients have Crohn’s disease that’s just in the small bowel. About a third of patients have Crohn’s disease in the small bowel and the colon. and then we also have about a third of patients who can have Crohn’s disease throughout the GI tract. So it is a variety of different presentations because a variety of places it can develop now indeterminate colitis. No one ever wants to be in a category of uncertainty. But I will tell you that about 10% of these patients, who come in with either UC or Crohn’s disease may end up in this category of indeterminate colitis, which means they probably have features of both disease. Sometimes these patients may also have other autoimmune diseases. So sometimes we see primary sclerosing cholangitis or PSC which is an autoimmune disorder of the bile ducts so close to the liver.

Katie Dunleavy, MB, BCh, BAO 00:08:09 Those patients can sometimes be in a grey zone or look slightly different. The other form of inflammatory bowel disease that we’re seeing a lot more frequently in clinic, especially in our older females, is microscopic colitis. And so the major difference is someone may present with diarrhea sometimes up to 20 times a day. So pretty significant symptoms. But when we do a colonoscopy, when we look with the scope we’re actually not seeing any inflammation. The colon itself appears normal, but we take biopsies from the right and the left side of the colon. So different sections to make sure we’re sampling adequately. And then when our pathologists look under the microscope they may see inflammatory cells. And so that’s why it’s called microscopic because it’s when you look under the microscope, and this can have just as bad of a quality of life impact on a patient as someone who has Crohn’s disease or all stroke colitis.

Amber Tresca 00:09:03 Right. Perfect. Thank you for that explanation. And I want to congratulate you on being the first person to ever mention backwash itis on this show.

Amber Tresca 00:09:11 I think that’s something that’s, almost, feels like an open secret in the IBD community. So important to know about. And I will put links to more information in the show notes, because we’re going to move on to the next question, which is that every IBD journey is unique. None of us are the same, but there are some common symptoms that people experience. So can you go over what some of those common symptoms are that might lead someone to believe that they could have a form of IBD?

Katie Dunleavy, MB, BCh, BAO 00:09:44 I love that you asked this question, especially because as women, I think that we may speak about our menstrual cycle growing up, but we don’t talk a lot about going to the bathroom. And, this is important to me because the whole reason I became an IBD doctor is because when I was in medical school in Ireland, my young cousin who was a pediatric patient, she was about 12 years old at the time, presented with, toxic mega colon, meaning? Meaning her colon was so sick that it had to be removed immediately, and it had turned out that she had symptoms for a long time leading up to that, but had just thought that it was normal.

Katie Dunleavy, MB, BCh, BAO 00:10:22 So I’m here to tell you that things that are not normal. So certainly change in your bowel habits, diarrhea, sometimes even constipation. If you’re seeing blood in your stool, that is definitely something you want to talk to your doctor about because there’s simple, non-invasive tests to start to take a look at what’s going on. A lot of our patients who have ulcerative colitis are eventually get a diagnosis of Ulster. Colitis will also have fecal urgency, meaning you got to run to the toilet so you know where they are. At all times, or sometimes you’re not going to leave your house because you can’t get to one. and that’s impacting your quality of life. So that is also not normal as well as nighttime. either spooling or incontinence. So if you have to wake up in the middle of the night to go to the bathroom, that’s not something that we see with run of the mill. Irritable bowel syndrome. And if you certainly have issues with incontinence or leakage of stool, that’s something we should also be seeing someone in office for and getting a rectal exam for.

Katie Dunleavy, MB, BCh, BAO 00:11:21 But I will say that there’s lots of symptoms and ways that IBD can present. It is an autoimmune disease. So unfortunately we have to ask questions from head to toe to make sure that the eyes, the mouth, the skin, the joints, other organs like the kidneys, the liver, that there’s nothing else that is involved. And often in our pediatric patients, it can be as simple as feeling like your child is not developing in the same way as other children, or that perhaps malnutrition is something that’s going on. So all of these play a role. And I would say trust your gut if something’s not right. Talk to your doctor about it.

Amber Tresca 00:11:58 Thank you so much for that. That’s such important information. And I’m so I mean, on the one hand, I’m glad you’re an IBD physician because we need you. But on the other hand, I’m so sorry to hear that, that it touched your family in that way. And that toxic colon is very, very scary. Serious complication.

Katie Dunleavy, MB, BCh, BAO 00:12:18 Thank you.

Katie Dunleavy, MB, BCh, BAO 00:12:18 Honestly, she’s been a huge inspiration for pretty much all of my research, which is now a lot of about the J pouch, which I’m sure we’ll talk about because of her journey. So she teaches me something every time I see her.

Amber Tresca 00:12:31 Oh, amazing. Yes, we will get to the J pouch because I have one and that is sometimes all I want to talk about. Oh, okay. So and as you just stated, getting a diagnosis for some people takes years because we don’t know what’s going on or people or it’s thought there’s nothing in my family, so this can’t happen to me. ET cetera. But when somebody thinks they might have an IBD or has symptoms that are consistent with the ones that you just described, what kind of tests should they expect to receive?

Katie Dunleavy, MB, BCh, BAO 00:13:03 That’s a great question. And I will also note that about 30% of patients who are eventually diagnosed with IBD will have had some sort of family history, so it’s not as high as you might think. Right. It’s not like sickle cell or cystic fibrosis where there’s just one gene that’s passed along.

Katie Dunleavy, MB, BCh, BAO 00:13:21 It actually seems quite complicated. But certainly if there’s someone in the family that you know about, another reason to get checked out sooner. It should always start with a history and physical exam. So truly, people should be asking you about how long you’ve had the symptoms for. When we say chronic in medicine, that usually means having symptoms for at least six weeks. That’s kind of our cutoff point. But trying to investigate not only what the symptoms are, but how they’re impacting your life. What are the things that you’ve done? So oftentimes people may alter their diet or stop going out and to do social activities. And so that also plays a huge role. you should expect a physical exam from head to toe. And you should also expect a rectal exam in many cases, especially if you’re having bleeding. Because we want to know, can I see an external hemorrhoid? Is there something on the outside that could be pertaining to Crohn’s disease? So those are all things you should expect when you see a gastroenterologist, so don’t be too surprised.

Katie Dunleavy, MB, BCh, BAO 00:14:22 I will say basic blood work can give us a good clue. We look for things like anemia or nutritional deficiencies. And if any of your inflammatory markers of the blood are high. And then we also could do some stool testing so infections can present in similar fashions. We always want to be sure to rule out the most dreaded infection of C difficile, of course. and then we often use a noninvasive inflammatory marker called fecal cow protection, which is basically a stool test that you return to your doctor. And it gives us a sense. Are things normal or is there something causing inflammation? But ultimately, many people are on the road to getting their first colonoscopy. And a lot of times that can be a frightening experience. I think we recognize that. And so you need as much information as possible before you go for your colonoscopy. I’ve heard from many people that the prep is the worst part. So trying to have tips and tricks before that to be sure that you understand the instructions from your medical team so that there’s no confusion on the day or extra stress.

Katie Dunleavy, MB, BCh, BAO 00:15:23 And then I will say, all physicians or most physicians these days will use some sort of sedation for the procedures that you’re comfortable. And you should speak with your doctor about what type of sedation is right for you. if you feel comfortable to talk to your doctor, if there is any past PTSD or medical trauma or other types of trauma that may come to light during an anesthesia procedure. That’s something we always welcome information before, but I will say it shouldn’t be painful, right? It could be a little discomfort. And afterwards you may feel just issues with the air that we put in. But the biopsies and samples that we take from all throughout the colon will not hurt. So it should be smooth sailing, and I know it can be frightening, but that’s usually the test we need. And then sometimes we’ll need some imaging like a CT scan or an interrogatory. and so when I say enteropathy, I mean we give you two jugs of oral contrast which tastes disgusting and will give you diarrhea and abdominal pain.

Katie Dunleavy, MB, BCh, BAO 00:16:23 and then.

Amber Tresca 00:16:27 I promise.

Katie Dunleavy, MB, BCh, BAO 00:16:28 You know, if we don’t tell you this, I was going to tell you. People think we’re dying after this sometimes. But to be honest, what it does is it lights up the small bowel. So this is especially for our Crohn’s disease patients or people who are having symptoms like that sound like an obstruction. It helps give us a really good look. So one way to think about it is the colonoscopy is like we’re looking at a river and you’re in the raft. So we get to see with our own eyes what’s going on. But the geography or the imaging test or we’re kind of in a helicopter above the river looking down. And so it gives us more of a bird’s eye view, if that’s helpful. So we’re not trying to do any unnecessary testing.

Amber Tresca 00:17:07 Yeah for sure. And I’ll say as far as the MRIs go, drinking the contrast, I don’t maybe I’m unusual. I usually don’t have too much of a problem with it. Like it goes down.

Amber Tresca 00:17:21 It’s the bigger problem is that I have a J pouch and I don’t have a large intestine. Sometimes they want to give me three bottles of it, and I refuse and will only drink two, so that maybe if I have that third bottle it wouldn’t go so well. So with IBD, because it’s immune mediated, There’s a lot of medications that we use to tamp down the immune system and stop that inflammation. And now it’s almost like choice overload. There are so many different medications, and now there are generics or biosimilars also available. I think it can be overwhelming for patients at time. They don’t they they don’t know what to do. So how do you help patients choose between the different treatments that are available to them?

Katie Dunleavy, MB, BCh, BAO 00:18:15 I think this is such a good question. And I will say, I think it’s also overwhelming for physicians. and, you know, I think we have to be honest about it. I think that people used to be more comfortable treating inflammatory bowel disease. Maybe if they did general GI, but now that’s kind of one of the main reasons.

Katie Dunleavy, MB, BCh, BAO 00:18:33 We have a whole extra year of fellowship that many specialists go through, because there are a lot of medications. And I will say it seems more of an art than a science. Of course we want to use evidence based medicine. A lot of times it’s about knowing your patient well. And so I will say, when I meet a patient, whether it’s their first medication or they’ve been through several in the past, it always matters. Kind of two different buckets. So one bucket is about their disease what’s going on. And then the other bucket is about them as a human and a person. And they are equally important. And so we have to take both into account. And it’s also about asking someone upfront what their preference is. Some people want to know every single option so they feel informed. Some people would prefer your top two and then help you narrow it down. And so I think that our job is to kind of be whoever a patient needs us to be by providing information and sometimes giving space.

Katie Dunleavy, MB, BCh, BAO 00:19:31 So the disease severity bucket means how bad is your disease? Where is it located? How long do we think you’ve had this for? do you have other symptoms outside of the GI tract? So, for instance, some medications are better at targeting what we call extra intestinal manifestations. So things that happen outside the gut that are from IBD. So is it joint issues or eye issues. And so we might choose different medications based on that. or does a patient also have something like psoriasis, or another type of autoimmune disease that we need to be cognizant of. So all of those play a role and it’s an important role. But we probably still have lots of different medications to choose each one. And so the patient preference sometimes we say upfront okay there’s different ways of getting medications these days. We have pills. We have injections we have on the body injections. especially for patients who have a hard time say using a needle. And then we have infusions and who knows, there might be other alternate forms in the future if there’s any strict contraindications, say a patient says I can never give myself a needle or get a needle for whatever reason.

Katie Dunleavy, MB, BCh, BAO 00:20:44 Then that’s something we need to know about from the beginning. Of course, we don’t want to restrict our options because of that alone, but it helps build trust. so talking about the means that a medication is given and then giving our recommendation for usually the top 1 or 2, I think we always need to consider, especially in women where they are in their life. So what are their life goals in the next year? Because I think that with IBD we have immediate action plans. So what needs to happen today or over the course of the next two weeks to get you feeling better? Then we have short term plans, which I like to think of 3 to 6 months. So what do we need to do in that time? And then our long term plans and all of those include a person outside of your office. So if someone tells you they’re finishing school or they are trying to make it to their daughter’s wedding or whatever it is, you need to work with a patient to get that goal, And work towards that with them.

Katie Dunleavy, MB, BCh, BAO 00:21:41 I think the other thing we also talk about with young women is where they are in their life cycle. Do they want to have children? Is that something they’re interested in? I talk to patients as young as 18 about this from their very first visit, because I think there’s a lot of misinformation. Women with IBD can have children. women with IBD can do lots of wonderful things. And I think that the most important thing is if that’s a path that someone wants to pursue immediately, we talk about why or why not. That’s a good plan for them. and so I think it’s just a two way street. At the end of the day, I’m not the one receiving the medication. And so it is the patient who will have to call and help with the insurance information and make sure that their specialty pharmacy is sending the medication, or fill out the forms for the drug company. And so you want the patient to feel confident in the decision that you’re making. and if it’s not working or if there’s side effects, then we need to understand why and move on to something else when we feel like it’s appropriate.

[MUSIC: Inside Beat]

Amber Tresca 00:22:53 Coming up, Dr Dunleavy tells us why second opinions should be normalized.

Dr Dunleavy, what about lifestyle changes? What role do you think things like diet or stress management play in treating IBD?

Katie Dunleavy, MB, BCh, BAO 00:23:18 Great question. It’s probably the most common question we get asked in clinic. and I will say that they play a huge role. I will say that we probably don’t understand fully the role of either, because research in both areas has really only come to light more in the last 5 to 10 years, But it makes sense that what we put in our body. So what we eat impacts our disease. As unfortunately, we all know there is no cure yet for IBD, which means that we don’t entirely understand why it develops. And so the role of diet is certainly something that’s plausible in that realm, which does not mean that a patient is at fault for developing inflammatory bowel disease. But it’s just one of the multi factors that go into why someone might develop an autoimmune disease. So in terms of telling patients from the start that you did not cause this, it was not something you ate.

Katie Dunleavy, MB, BCh, BAO 00:24:11 I think that’s very important especially at first time diagnosis. But a lot of times if someone’s not feeling well, they’re going to change how they eat to try to make themselves feel better. And that’s just human nature. And so it’s our job to investigate as physicians. Well, what are you eating? So you should occasionally be talking to your doctor about what exactly you eat each day. And for some people, that does mean keeping track of it, trying to come to a realization yourself about what you’re eating. Because if we create a restrictive diet for patients by telling them to avoid certain food groups, then sometimes people are left with like three foods, and that’s not very good for anyone. And so while there are certainly times where we may limit what someone eats after a surgery or if they have obstructive symptoms like nausea and vomiting, and we’re concerned that they could be impending hospitalization, that’s not the majority of the time. And so I work very closely with an IBD dietitian who is someone who’s actually specialized in patients who have chronic GI issues.

Katie Dunleavy, MB, BCh, BAO 00:25:14 So not just any dietitian, but someone who knows about what you’re going through. And if there’s any long term dietary plan. I would not do it without a dietitian. So there’s lots of diets out there you may have heard about. There’s things like the Fodmap, which is something that we more frequently use for irritable bowel syndrome that should not be done alone, should always be done under the guidance of a clinician. And then there’s also what we call enteral food intake, which is when oftentimes in the pediatric population, people may be doing more of those kind of, protein supplement shakes, or sometimes they have to be given through a feeding tube and there is some evidence for dampening the inflammation. But what I will say, our most common recommendation is that diet needs to be taken in account, with the medical therapy. So if you have moderate to severe disease, whether it’s Crohn’s disease or ulcerative colitis, we’re going to be talking about starting most likely a biologic or immunosuppressive medication. And so in combination with that, I think it’s a great opportunity when you start to feel better and the inflammation starts to get under control, that we talk about moving towards a mediterranean type diet, which for us Americans really means more fruits and vegetables and limiting the amount of processed foods we’re eating, which are not only going to be beneficial for your gut, but it’s also going to be beneficial for your overall health.

Katie Dunleavy, MB, BCh, BAO 00:26:42 That is kind of the typical recommendation I would give. And then if there’s questions outside of that dietitian, that’s where we go. And I think similar things can be said for stress management. So I will say that stress patients often tell me that, you know, they can feel that if something stressful was going on in their life, then maybe five days later they might notice that a flare or their bowel habits have changed. So we know that there’s a correlation. Certainly it is not all in your head. Definitely not. But stress management with a chronic illness is important because it’s not something that ever goes away. And so there are going to be times when we as a team go through good times. We get to celebrate positive moments, and then there’s going to be some hard times where things are not going great. And so we need to make sure that we’re looking at your mental health. So is there anxiety or depression playing a role here or anything different, and then referring you to our colleagues who have tools to help you.

Katie Dunleavy, MB, BCh, BAO 00:27:39 So there’s actually a huge range of tools these days. We have got specific, psychologists who can help. I learned all about hypnosis on your last episode of about IBD, which was incredible. And I think there’s a number of tools, including meditation, yoga even, that can help patients. And so we need to be open to all of it. But what I ask is that you just talk to your doctor about what you’re planning to do before you start it.

Amber Tresca 00:28:04 Dr Dunleavy, is there any one particular thing that you really want IBD patients to understand about these diseases?

Katie Dunleavy, MB, BCh, BAO 00:28:15 I will say it’s very simple. Your voice matters. You know your body best. So if there is something that is wrong or different, for whatever reason, I think you need to advocate for yourself. Unfortunately, it can still take up to two years for a patient who has inflammatory bowel disease to get diagnosed. And so although you may love and trust the doctors that you currently see, sometimes cases present differently. And it just means you need to get yourself in front of an expert who can help establish the initial diagnosis.

Katie Dunleavy, MB, BCh, BAO 00:28:51 I will also say that it is important who your doctor is. You should feel very comfortable talking to them, not just about your bowel habits, which we all get comfortable with once you have inflammatory bowel disease. But things may come up over time. As we said before, relating to mental health or sexual dysfunction or how do I talk about dating in this? And I think that having a close relationship, where you feel like someone is listening to you is the most important thing, and knowing that your doctor may not be the only person on your team, and probably they shouldn’t be, because there’s actually way more evidence out there that having multiple people you can turn to, whether a dietician or a psychologist, or a pelvic floor physical therapist, or whoever it is in your life that we all need to work together as a team. And so finding the position that’s willing to do that is the most important thing. And honestly, if you’re not finding someone. Medicine is all about second and third opinions, so no one should ever feel threatened if a patient wants another opinion.

Katie Dunleavy, MB, BCh, BAO 00:29:53 In fact, it’s just getting another set of eyes on something that’s going on.

Amber Tresca 00:29:57 I love that you said that I am on my own pelvic floor therapy journey, and when I finally got referred and went in to see her, she said, you had all these surgeries and then you had two babies. Why has it taken it till now? And I said, ma’am, I would like to know the answer to that question myself. So and it took advocating for myself. It’s, it’s it’s hard, it’s really hard. but to that end, I, you know, a lot of patients listen. But I also know that clinicians listen as well. And so I don’t like to put it all on patients. So I want to give you the floor to talk directly to your colleagues, your colleagues maybe that don’t specialize in IBD, their community. GIZ what’s your advice for them?

Katie Dunleavy, MB, BCh, BAO 00:30:52 So in a similar vein, I would say please refer early. We would much rather see a patient at the beginning of their journey with inflammatory bowel disease than after they’ve cycled through 4 or 5 medications.

Katie Dunleavy, MB, BCh, BAO 00:31:05 Oftentimes, our threshold in an IBD Center of Excellence, meaning usually a large academic institution where there’s risi IBD patients all the time. So for instance, at my new job at MDH, I’m just going to be seeing IBD patients. So with that level of experience we have more nuanced care recommendations. So we’re happy to weigh in and provide expert evidence for a period of time and send patients back to their local teams when they’re feeling better or doing great. I think we all need to work together, just as I don’t take care of complex pancreatic disease by myself. I think we need to know where our limits are in medicine, but I think the other major thing that’s been an area of interest for me is that we’re seeing more and more overlap in patients who have inflammatory bowel disease and GI motility issues. And so this is things like constipation, pelvic floor dysfunction or even gastroparesis, which is slow emptying of the stomach. And these conditions a lot of times can mimic an inflammatory bowel disease flare. and so sometimes what I do see is that patients really are getting frequent courses of steroids when we need to be a little bit more judicious.

Katie Dunleavy, MB, BCh, BAO 00:32:19 And so when symptoms come on that feel different, the patient does the right thing and they go to their physician. But I think the next step from the physician aspect is that we need objective testing to look for inflammation. So are we seeing that there’s inflammation on imaging or colonoscopy? Or how happy are the stool testing showing as inflammation? Because if not, then maybe we need to be broadening our horizons and starting to treat a disorder of the gut brain interaction that when actually caught early and treat it adequately, can really improve a patient’s quality of life. So just because you have IBD does not mean you will never have irritable bowel syndrome or a number of other conditions. But I think that even as a patient, but certainly as a physician, having some objective evidence before starting steroids can be really beneficial.

[MUSIC: Pulse Beat]

Amber Tresca 00:33:10 Dr Dunleavy, everybody who lives with or works in chronic illness care has had at least one moment where things didn’t go as planned, and they learned something that they’ll never forget. What’s something that you learned the hard way?

Katie Dunleavy, MB, BCh, BAO 00:33:26 Great question.

Katie Dunleavy, MB, BCh, BAO 00:33:27 I think we are all always learning and our patients are our teachers in many ways. And so one thing we haven’t talked about too much is the complication of colorectal cancer or other types of cancer and inflammatory bowel disease. And I do want to say that colorectal cancer, the risk remains real, even if a patient feels good and has been in remission for a long time, it matters more about what their duration of their IBD is and the most severe level it was at one time. So it may have been that you had a very bad onset of symptoms, and it took a long time to get things under control. But you’ve been doing well, so you haven’t gone back to see your GI team. But colonoscopies save lives, and it is our duty to help advocate for patients to receive them, even if it is something that is an inconvenience and can be difficult for patients to undergo. And so I will say that I have seen a number of IBD patients who feel great, and we push the colonoscopy off, and then when we do eventually do it, there is evidence of dysplasia, which are kind of precancerous cells.

Katie Dunleavy, MB, BCh, BAO 00:34:29 Or sometimes we can see evidence of cancer. And so just as a reminder, in any IBD patient, usually about eight years after their initial diagnosis, if they have a fair amount of involvement of inflammation in the colon, we should start doing screening. And so that means looking for signs of colon cancer. If an IBD patient also has a autoimmune disease called PSC or primary sclerosing cholangitis, then this should be starting from the very first day of their diagnosis because their cancer risk is higher. I will say that many of our patients do require surgery at some point in their IBD journey and in our ulcerative colitis patients, often that surgery as a collector or a resection of the colon, sometimes they end up with a ostomy. So a pouch that connects to the abdominal wall where they empty their stool, or sometimes they have a small bowel that’s fashioned into a J shape like we were talking about. We call that a J pouch so that there’s bowel continuity, meaning you can use the toilet in a somewhat regular way because I won’t call it regular.

Amber Tresca 00:35:38 Yeah, it’s definitely not regular. But anyway.

Katie Dunleavy, MB, BCh, BAO 00:35:41 and I will say that those patients really need to come back and see us, so we’re happy they have the surgery. The decision for doing that can be a number of different reasons. And in many patients, they feel like their quality of life gets better. And it was a surgery that they needed at that time. But it doesn’t mean you should never come back to the GI because we need to be doing pouch copies, meaning we look in the pouch with the scope on a semi frequent basis every 1 to 3 years or so, depending on your risk factors. And I will say, very recently I had a young patient less than age 30, who was diagnosed with ulcerative colitis in childhood, which can be a more severe type of disease. He had his colon out at some point. And, then he was told he was cured and he just never saw. And he went again and he started having some bleeding from below, which is why he came to us and unfortunately had a cancer in the pouch, which I will say is exceedingly rare.

Katie Dunleavy, MB, BCh, BAO 00:36:37 It is not something we typically see. But now he had his pouch excised, and him and his wife and their new baby are all doing great. So it is something that we need to just remember. And although it certainly can be an inconvenience. Colonoscopies, pouch copies, endoscopy they’re very important.

Amber Tresca 00:36:57 I agree 100%. I had my pouch surgery in 1999. We didn’t know very much at all then, and so I don’t want to make it sound like anybody that I wasn’t cared for properly because I was based on what we knew at the time. But my gastroenterologist shook my hand and said, nice knowing you. And then I didn’t see anybody for a long time. And then. So I also learned the hard way because when Symptoms came back. I had to establish care somewhere new. It took time. ET cetera. Etc.. And so now I do present myself every 1 to 3 years. Currently, it’s every three years. I talked my team into letting me do that for a patch because I had my colon removed partially due to precancerous cells.

Amber Tresca 00:37:49 So it is really important. And even though it’s, you know, it’s rare, for cancer to show up, I certainly don’t want it. And if that means I need to take two days and drink some clear liquids and have a nice propofol nap. yeah, I’m going to I’m going to do that. So, we’re big fans of screening here at about IBD. So very interesting that you and I sort of learned the same lesson coming at it from different points. And I’m glad to hear that your patient is doing well.

Katie Dunleavy, MB, BCh, BAO 00:38:19 It’s true. And I liked what you said is that there’s new information all the time about IBD. So I think we never want to disparage one another. Practitioner is recommended because very likely this is what they made this recommendation in good faith based on the information they had, which is why just getting updated information sometimes from reputable sources is very important, which I’m sure you always share with your patients on about IBD.

Amber Tresca 00:38:45 Yes, I do try very hard. Dr Dunleavy, this has been the most packed episode.

Amber Tresca 00:38:53 I’m going to put links to so much more information in the show notes and on the on my website on about IBD. Com so I hope people will check it out and send this to anybody in their family who maybe doesn’t quite understand what they’re dealing with, so that they can take a little bit of time and learn a lot. I want people to connect with you after they are finished listening or watching this episode. So where can people connect with you online or in the real world, if you want to tell us that too.

Katie Dunleavy, MB, BCh, BAO 00:39:23 Perfect. Well, I just moved my practice to Massachusetts General Hospital, so we’ll be based in Boston, which is great. So anyone in the New England area, I’m more than happy to see you. And then on Twitter or X, you can find me at Dunleavy underscore. Katie. Sometimes I really just like to promote the voices of our patient advocates. Or occasionally you might hear an opera tidbit.

Amber Tresca 00:39:48 Yes. And I would encourage everyone to, you know, come for the IBD content, stay for an education in some opera.

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Amber Tresca 00:39:59 So let’s just leave that there. Dr Dunleavy, thank you for connecting with me and for doing this episode with me at what is a very busy time in your life. I really appreciate it, and I know the information is going to be so impactful to the IBD community and beyond.

Katie Dunleavy, MB, BCh, BAO 00:40:17 Thank you so much.

Amber Tresca 00:40:22 Hey super listener! Check the show notes to find links and information about the topics discussed in this episode. Plus, get a written transcript and much more on my website about IBD. Com. If you enjoyed this episode, please consider sharing it with someone or leaving a rating in your podcast app. Reviews and ratings help me grow the show and bring you more great content.

This episode was sponsored by Connecting to Cure and I am so grateful for their support. Thanks for listening and remember, until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio.

About IBD

Articles and podcasts about inflammatory bowel disease (Crohn's disease and ulcerative colitis).

IBD 101: Getting to the Bottom of Inflammatory Bowel Disease Featuring Katie Dunleavy, MB, BCh, BAO – About IBD Podcast Episode 183

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