Inflammatory Bowel Disease can be debilitating for patients but there if hope.  Dr. David Binion, Co-Director of the UPMC IBD Center discusses treatment options and new advances in care.

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– This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgements when advising their patients. Patients in need of medical care should consult their personal care provider.

– Inflammatory bowel disease, or IBD: It can be debilitating to patients, but there is hope when it comes to treatment. Hi, I’m Tonia Caruso. Welcome to this UPMC HealthBeat podcast. And joining us right now is Dr. David Binion. He is the co-director of the UPMC IBD Center. Thank you so much for joining us.

– Thank you, Tonia. Thank you for having me on the program.

– All right. Let’s first talk about IBD versus IBS. We start to see commercials for both of these on TV right now. What’s the difference between the two?

– That’s a really important distinction to make. So, the initials IBD stand for inflammatory bowel disease. IBS, irritable bowel syndrome, is actually a lot more common than IBD. And I think the simplest way to think about these two problems, and perhaps the big difference, is damage or injury to the bowel. Inflammatory bowel disease is a problem where inflammation will cause injury to the lining of the intestine, the large bowel, the colon, and that injury can be progressive. People can develop problems over time that might lead to hospitalization, surgeries. It can be a fairly serious issue if left untreated and unaddressed. Irritable bowel syndrome, thankfully in some regards, doesn’t cause tissue damage. It causes symptoms that can be pretty distressing. The people who suffer from irritable bowel syndrome will have a lot of disruption to their life, but thankfully they don’t have the level of injury that we see in patients who suffer from inflammatory bowel disease.

– So, IBD two types and talk a little bit about those.

– So, inflammatory bowel disease is an umbrella term for, primarily, two big conditions. One is called Crohn’s disease, the other is called ulcerative colitis. There are probably additional health problems that have similarities to Crohn’s and ulcerative colitis that are not as well, perhaps, characterized. We know patients who have low immune function at birth, they have a congenital immunodeficiency, will develop problems that look a lot like inflammatory bowel disease. There are some genetic problems that are also attributed, but they’re quite rare, they’re perhaps more commonly seen in pediatrics, but the two big categories are Crohn’s and ulcerative colitis. It’s pretty much a 50/50 split between the two problems in the United States.

– And what happens in each of those?

– We can talk a little bit about Crohn’s first. So, Crohn’s disease is inflammation that can affect any part of the GI tract. The most commonly affected area is the very last part of the small bowel, that’s an area called the terminal ileum, it means the last part of the ileum, terminal ileum. That area is gonna be affected in about two thirds of people with Crohn’s disease, but Crohn’s can involve any part of the GI tract. It can involve the colon exclusively. It can involve the beginning parts of the GI tract, the esophagus, even sometimes the mouth can be affected by Crohn’s issues. Ulcerative colitis, by definition, has to involve the colon only and it follows a pattern. It usually involves the very last part of the colon, that’s the rectum, and then it’ll ascend. It’ll actually come, essentially, in reverse direction, up the left side of the colon, the sigmoid colon, and then, potentially, the whole colon. And historically we’ve thought about a third of the patients have limited disease, just in the very last part. A third have left-sided colitis and a third have pancolitis. So, ulcerative colitis by definition is just the colon. Crohn’s can affect any part of the GI tract.

– And do we know what causes this? What’s the root cause for either one of these?

– That’s the big mystery and that’s what we actually do a lot of effort in terms of trying to understand etiopathogenesis. Many, many health problems are characterized by chronic inflammation, and we don’t have an answer yet when it comes to the causes of chronic inflammation. If we think about various organ systems in our bodies, if skin has chronic inflammation, we might call it psoriasis. If there’s chronic inflammation in the lung, we might call it asthma. Chronic inflammation in the GI tract is most commonly called either Crohn’s disease or ulcerative colitis. And we, unfortunately, don’t yet know what is triggering and, perhaps, perpetuating chronic inflammation. We’re getting better. We have much better understanding, but we don’t have the final answer yet.

– Do we know, are there certain people who are predisposed to this?

– Again, a fantastic question. The biggest risk factors for developing inflammatory bowel disease will sometimes be a family member. So, there’s a genetic component to inflammatory bowel disease, but it’s not purely a genetic disease. It’s not guaranteed to be transmitted from parent to child. And we’ve actually come to realize over the years that identical twins, if an identical twin, one sibling has Crohn’s disease, the other sibling only has about a 60% chance of developing Crohn’s. So, there are very powerful environmental factors that will influence these conditions. When it comes to ulcerative colitis, the impact of environment is even more powerful. With an identical twin pair, one twin who’s diagnosed with ulcerative colitis, the other twin only has approximately a 5-10% chance of developing UC.

– Wow. Okay. So, how did you become interested in this as a field of study?

– I’m pretty upfront about this. I was diagnosed personally with Crohn’s disease in high school many, many years ago, over 40 years ago. And I’ve seen the field develop in some regards. I chose to become a physician and an investigator in inflammatory bowel disease because of my own experience. And I’ve really dedicated my career to helping people with these problems and to actually try to make it better. And it’s really essential that academic medical centers are leading the effort when it comes to research. When we have an incurable illness, my worldview is that every patient experience should be to help that person get better, but should also be an opportunity to make the field improve and to improve our understanding and to really get closer to a cure, which is where we’re hoping to achieve.

– Right. And we were talking earlier, it is diagnosed much more often these days. Is that just because we’re better at diagnosing it, or why is there such an increase of cases?

– So, inflammatory bowel disease was a fairly rare problem decades ago, and the epidemiology is fairly striking. So, after the year 2000, there has been a fairly dramatic increase in the number of individuals who are being diagnosed with IBD. Now one could argue that this is observer bias. We’re looking for it more frequently, therefore we’re finding it. I think that’s of the picture, but there has been a fairly substantial rise in westernized countries, including the US, since the year 2000. And we estimate 1% of the U.S. population, about 3 million people, suffer from inflammatory bowel disease. If we look at the entire world, it’s even more striking. As populations and countries westernize, as they become more affluent, there’s a substantial increase in inflammatory bowel disease. Ulcerative colitis comes first and then Crohn’s will lag behind by about 15, perhaps two decades, 15 to 20 years. And that tells us early life events are playing an important role in etiopathogenesis. So, there has been an increase throughout the world. The biggest increases have occurred in countries like Iran, and Tehran, Iran, the city, there’s been a marked increase in patients diagnosed with IBD. India, some of the more affluent parts of India in the south, the Silicon Valley cities of Bangalore and Hyderabad. Big increase and inflammatory bowel disease in China. As China has westernized, there has been a big increase in IBD there as well.

– So, do we think there are environmental factors? Are they things that we’re eating in our diets? Do we know any of that?

– So, the human genome can’t change that fast. The human genome will potentially change over the course of centuries if not thousand and years, millennia. So, the environment has to play an important role. Now environment is a very, very challenging area for research, but as you pointed out, diet is gonna play an important role. And we’ve learned that diet will be an important part of our health. We feed ourselves with our diet, but we also feed our microbiome. We also feed the organisms that live in our GI tract. And the microbiome is potentially playing a driving role in inflammation when we think about both Crohn’s and ulcerative colitis. So, people who eat a Western diet with lots of ultra-processed foods are going to have a different microbiome compared to someone who is perhaps eating a healthier diet, that’s a little bit more fruits, vegetables, fiber, the things that we’re all supposed to eat that are sometimes very challenging for patients with inflammatory bowel disease to tolerate.

– There is so much about the IBD Center that I wanna ask you about. But, first, let’s give folks a sense of the symptoms and what it’s like day to day for folks living with IBD.

– So, our goal is to have a person feel completely back to normal. That’s what we’re hoping for, number one, And the majority of our patients are in remission. We are fortunate in the sense that we have many more to tools available to us when it comes to medications. We have better insight, better knowledge. We have a better approach to helping our patients really get their lives back on track. In past eras, I would say that wasn’t always the case. We had many fewer options therapeutically. Some of our best medicines were things like corticosteroids, prednisone, which has a lot of side effects. So, it was this cruel irony that our best drug was the drug we had to stop as soon as possible because of its side effect profile. We have the ability now to, I think, really tailor therapy to our patients. So, some individuals are fortunate. They might have IBD, but it’s fairly mild. And if it’s a mild case, we have the ability to use less powerful agents that might have less toxicity profiles. Patients who have a more medium-strength disease, we can identify these individuals and treat them with more of our standard immunomodulator approaches. And then we do have our more fancy drugs that tend to have TV commercials. And those are the agents that are sometimes used most effectively in people who have that a little bit higher level of disease burden over time.

– But, when people come to the door to the UPMC IBD Center, it is more than just medication. There’s a very holistic approach and talk about what that looks like and what someone can expect.

– I think to take care of people optimally, we just don’t focus on treating a disease. We want to take care of a person in terms of their quality of life. We wanna understand how the disease is impacting them. We put emphasis on diet and nutrition. We actually have dieticians who are dedicated to inflammatory bowel disease patients who will help in terms of making accommodations. If there are issues with the GI tract having been injured or scarred or, perhaps, having gone through surgery. One of our most important advances here at UPMC is the work that’s been done with one of our colleagues, Dr. Eva Szigethy. And Dr. Szigethy is a world-renowned psychiatrist who’s really dedicated her career to the care of patients with inflammatory bowel disease, with this focus on sort of the gut-brain interaction. So, the gut is a organ that’s highly, highly innervated. There are as many nerves in our GI tract, as there are in the spinal cord and those nerves help to regulate function. When people are stressed, there’s gonna be less health in the GI tract, and really helping to help people cope successfully with the challenges of chronic illness is really where her forte is and she’s done an absolute fantastic job in that regard.

– And when you talk about that, there’s the expression, “It was a punch in the gut,” like your emotions, you feel things, so important and so connected. Lots of times, I’ve read with IBD can come social isolation, is it because the symptoms can be so jarring you’re afraid to go out?

– Yeah. Those are really important points, I think when people’s symptoms involve the bathroom, having urgency to get to the bathroom, diarrhea, abdominal pain, that tends not to be a very glamorous symptom complex. And in the era before the internet and before social media, it was even more isolating simply because people didn’t know other individuals who had these problems. Nowadays, things have changed. We have many more people suffering from these issues. When we look at the impact of advertising of medications on television and media, it actually serves a purpose to make people aware of these issues. And, fortunately, we have support groups where patients will have an opportunity to talk to each other. We have fantastic members of our community. Lori Plung is one individual who’s really gone above and beyond. And she’s been recognized by the National Foundation, the Crohn’s and Colitis Foundation for her efforts as an advocate and a liaison to support patient efforts to really learn how to cope and deal with these problems.

– Is there a recommended diet, or is it individual for each patient dealing with IBD? What are sort of the things that diet-wise you focus toward or move toward and things you stay away from?

– So, the challenge with IBD is that one size does not fit all. And when we think about diet approaches, we have to take into account where injury might be located in the GI tract. We have to really, I think, make accommodations. So, a healthy diet typically emphasizes fruits and vegetables, and sometimes that’s the hardest thing for a person to tolerate. So, if I had to give overarching recommendations, it’s really common sense. Removing added sugar from the diet is a very important strategy that will help people. We actually just studied diet in about 2,000 of our patients over the past five years, and we’ve just published those findings. And we found that individuals who used a lot of soft drinks, a lot of sugar-sweetened beverages did worse over time. So, this is the first report that really links the consumption of a specific dietary component that we all know is, perhaps, not the best for us with worse inflammatory outcomes when we take into account all of the parameters. We have come to realize that, as I pointed out, when we eat, we’re not just feeding our body. We’re actually feeding our microbiome as well. And people who use a lot of simple sugars are gonna push the microbiome in a less healthy direction. It’s gonna actually become more pro-inflammatory. Some of the organisms that really prefer added sugar as a substrate are gonna be proteobacteria and coliforms, which are pro-inflammatory. If we think about the other end of the spectrum, where we have complex carbohydrates, fiber molecules, they can be incredibly healthy over time, but when a person’s in a flare, they can’t eat those types of foods. We have to sort of reintroduce those foods when they’re in remission. And this is actually sort of the complexity and the timing and the nuance that is really, I think, a major part of our center.

– That research study is certainly important for so many people. What’s some of the other research that’s underway there and what gives you hope for the future?

– So, the research group that I had is, I think, trying to take what is a very pragmatic approach to understanding the complexity of inflammatory bowel disease. And the approach that we have is a very, I would say it’s a business school approach, where if you keep track of all of your patient’s outcomes over the course of years, you can very quickly start to see who has done well, and who has done maybe not as well, maybe they’ve done poorly, and they’ve really had a more challenging clinical trajectory. And then you can go back and reverse engineer why. And we’ve used this approach to really understand the complex trajectories of all of the subgroups of patients. And we’ve tried to make it as user-friendly as possible. We build it off of the same laboratories that we use on a routine basis, the complete blood count, CBC, that’s gonna be the most commonly obtained lab in the care of a person with inflammatory bowel disease. And we can actually repurpose that data to become a crystal ball to predict the future. So, we can use that information to help give us prognostic guidance, where things are gonna be headed in five years, and, hopefully change things in a better direction, make things better for our patients.

– So, what is seen as success in treating IBD?

– The goal of treating IBD is to help a person get back on track, have the optimal quality of life they can achieve. They want to have goals in terms of education and occupation and family. We want them to achieve all of those. We want them to have a normal lifespan, and we want them to be, as best we can achieve, free of the burden of disease that could impact them on a day-to-day basis.

– When it comes to getting help. I guess, first, is this something where you’re diagnosed very young with this or can you be diagnosed as an adult later in life? And when do you know that it’s time to go see someone and get some help?

– So, there is a pediatric component to the disease, about a quarter of people with inflammatory bowel disease are diagnosed before age 18. So, there are many, many pediatric patients who will then graduate into adult care and we take care of those folks, but IBD can be diagnosed at any age. It can be diagnosed in the first few months of life, it could be diagnosed in individuals who are in their eighties and nineties. So, it is a illness that can affect the entire spectrum of human life, the human lifespan. Primarily, it’s gonna be diagnosed during the peak ages when a person should be in their optimal health, late teenage years, early twenties, early adulthood. The symptoms that prompt a person to seek care or evaluation, I would say, change in the bowel habits, weight loss, waking up at nighttime to have bowel movements. Those are sort of the cardinal features that really distinguish a person from IBS, perhaps having more of an IBD-like picture. Waking up at night and weight loss.

– So, if that is happening to you, do you start with your PCP, or, you know, can you just call the IBD Center? What does that look like?

– Interesting question. I would say it’s usually good idea to start with your primary care physicians, just to get a sense of where things are, and they’ll be much more in tune with an individual. And should there be any of these clinical red flags that I described, that definitely warrants evaluation by gastroenterology.

– And, really, people from around the country come to you at the UPMC IBD Center. Talk a little bit about that.

– So, I think our center, the UPMC IBD Center, provides outstanding care and that outstanding care includes expertise in surgery, it includes expertise in nutrition, expertise in medical care of our patients, expertise in the sort of psychosocial interplay, and the psychiatry of dealing with chronic illness. But, in addition to providing really world-class care in all of these regards, we integrate research into what we do for our patients. And all of our patients are offered an opportunity to be a part of our studies. Simply by seeking care here, we have learned how to take their information, their clinical data, if they give us permission, and use this as part of this discovery effort, to really help us move things forward. So, people who suffer from an incurable illness just by receiving care in our center, they’re helping us on a path to make things better. And research is the way to find a cure. So, we take care of individuals who have some of the more severe forms of inflammatory bowel disease. That’s one of our areas of expertise. And thankfully, the majority of people who suffer from Crohn’s and UC will have the milder forms of the disease. I think that’s a fair statement. But there is a group of folks who are gonna be on the far end of the spectrum, who are really challenged by what could be best described as life-threatening illness, and people who have gone through multiple surgeries, over time, they’ve gone through multiple hospitalizations, they’ve really, in some regards, burned through many of the newer agents that we have available. We, thankfully, have more drugs now to treat our patients than we’ve ever had before. And sometimes these are individuals who have, perhaps, a genetic underpinning that is really driving that very severe and very aggressive disease process. We do have the ability to help these individuals. UPMC is the largest center in the world when it comes to small bowel transplantation and patients who’ve suffered from IBD have been a part of that program for sure. We also have novel programs that will offer some of these patients, who are really challenged by severe disease, a opportunity to reset their immune system. And that is the Autologous Bone Marrow Transplant Program, which is headed by my colleague, Dr. Paul Szabolcs at the Children’s Hospital of Pittsburgh. So, Dr. Szabolcs and I have worked with individuals from throughout the United States who’ve come here to essentially have that immunologic reset, where we actually harvest stem cells from an individual, freeze them, the person undergoes an ablation of their bone marrow, which will essentially wipe out their immune system. It wipes out the allergies and some of the immunogenicity that’s perhaps driving inflammatory bowel disease. An autoimmune reaction to your own micro flora is actually felt to be one of the driving stimuli for this chronic inflammation. And, because there’s so many microorganisms that are found normally in our GI tract, there’s this perpetuation of inflammation that can occur. So, when people undergo the autologous stem cell transplantation protocol, we will give them a second chance. We will downgrade the inflammation. It’s a very challenging protocol, and it’s not available for everyone on a routine basis at this time, but, for people who are really in this most-severe category, I think it’s a life-saving modality.

– Wow. And what is it like? And what’s the reaction from patients when they find out there is something that you can do to help them and that there is some hope?

– Our motto is we can always help people. We can help people in all ways and shapes and forms. And sometimes we can’t make things perfectly better, but we can help them with coping mechanisms. We can help them with day-to-day strategies that’ll make the disease less intrusive on their life. And in certain situations, as I pointed out, we can help them with life-threatening illness. So, it’s incredibly rewarding because when you’re dealing oftentimes with young people whose whole lives are ahead of them, you can really reset them in a direction where they can succeed and successfully deal with these challenges. And in some regards, you know, it can even motivate them to greater things.

– Well, Dr. David Binion, some great information. Thank you so much for coming in and spending time with us today. We appreciate it.

– Thank you so much, Tonia.

– I’m Tonia Caruso. Thank you for joining us. This is UPMC HealthBeat.

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