The essential guide to understanding - and treating - IBD

Inflammatory Bowel Disease can be an incredible burden to bear - painful, embarrassing, isolating and, for many patients, as difficult to deal with mentally as it is to manage physically.

Today's guest is Dr. Erin Forster, a gastroenterologist from the Medical University of South Carolina, and she's here to let you know that it doesn't have to be that way. IBD conditions - particularly Crohn's Disease and Ulcerative Colitis - can be treated, especially nowadays, with a surprisingly large range of medications and life strategies that can make a real difference for you.

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Music: Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
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Transcript

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 today is Dr. Erin Forster. She's a gastroenterologist in Charleston, South Carolina, affiliated with the Medical University of South Carolina, also known as MUSC. She's been an attending physician for five years and has an expertise in treating inflammatory bowel disease, including Crohn's disease and ulcerative colitis, as well as pancreatic biliary disease. So welcome., thank you for joining us, Dr. Forster. 

Dr. Erin Forster: Thank you so much for the invitation. I look forward to our conversation, Bruce. 

Bruce Kassover: Yeah, I think we're going to have a lot of really, really valuable information for many of our listeners. So maybe you could tell us a little bit about how you got to become a physician specializing in gastroenterology.

Dr. Erin Forster: Absolutely. I didn't know that I wanted to grow up to be a plumber. I thought I'd be doing ophthalmology. My mom is an optometrist. But while I was in medical school at the University of Miami, I had some really charismatic mentors who practiced the care of IBD patients. And I knew that a procedural specialty, as well as one in which I'd have longitudinal relationships with patients over time, would be a great fit.

Bruce Kassover: That sounds excellent. So tell me, what sorts of conditions do people generally get referred to, to see a gastroenterologist? 

Dr. Erin Forster: Well, I do wear two hats at work, as you alluded to in the introduction. My first hat is one treating patients with inflammatory bowel disease like Crohn's disease and ulcerative colitis. And the other hat I wear is dealing with patients who have a bile duct disorders or pancreatic disorders like chronic pancreatitis or pancreatic cancer. Those patients are the ones that need my fancy plumbing services like endoscopic ultrasound and ERCP. Whereas the patients who have IBD, it's a very clinical-focused relationship with colonoscopies sprinkled in between.

Bruce Kassover: Sounds like there's a really wide range of different sorts of conditions that you wind up treating every day. 

Dr. Erin Forster: Absolutely. The IBD patient relationships do kind of grow over time and, and last a while, whereas the endoscopic relationships you might say are more like a couple of procedures, and then we might say, “Thanks, it's been good knowing you,” but otherwise it usually is a longstanding relationship. 

Bruce Kassover: Now, when you said longstanding, I mean, what are we talking about? 

Dr. Erin Forster: Well, for my IBD patients that are doing well, I usually see them two to three times a year. If we're handling a flare, sometimes it can be more frequently with five or six visits during the course of a year.

Often we discuss medication management. Sometimes we're planning for future family building. Sometimes we're trying to figure out a plan on the way to college. So it can really go a lot of different directions. 

Bruce Kassover: You know, that makes me think, a lot of the people who are listening to this may be people who are already in treatment for a bowel condition like IBD and they're probably familiar with much of what you're saying. However, a number of people who are listening to this are people who are sort of, you know, first discovering that they, they may have some of these conditions, have one of these conditions. So maybe you want to talk a little bit about for that patient, what sort of things do they look for that that should be giving them a hint that, “You know what, I need to see a specialist. I may have a real problem.” What are the sorts of signs that somebody might have a condition that would fall under your area of expertise? 

Dr. Erin Forster: Thanks for that question, Bruce. Certainly, we do see new patients as well as manage chronically affected patients. If someone notices that they're having abnormal weight loss, blood in their stool, mucus in their stool, if they're having a lot of cramping, abdominal pain, or perhaps diarrhea or unusual constipation that would be a departure of what they had been experiencing in months and years past, sometimes that would be a good thing to bring to your primary care physician's attention. Or if you're already under the care of a gastroenterologist, if there's a family history of someone in close to you who has a history of ulcerative colitis or Crohn's disease, that can also be very helpful.

When patients are affected with IBD younger in life, sometimes it can be failure to thrive or you feel like the calories in aren't the calories that are on your body. Sometimes it can be a little more obscure, like anemia or having a low hemoglobin level, maybe associated with fatigue or poor sleep. All of those things sometimes can land you in my office, but with open arms for sure. 

Bruce Kassover: I'm guessing that what you're saying is that most patients come to you through a primary care physician or through some other physician that they're already dealing with. Is that, is that a fair statement? 

Dr. Erin Forster: Yes, we are a referral-based practice, but patients who might have an inkling or a suspicion of a diagnosis of inflammatory bowel disease can find our practice on the Crohn's and Colitis foundation website under “Find my provider” or “Find a medical expert,” and we accept referrals that way. There's not obstructions to getting into clinic but we try to pair patients with providers for, whose expertise matches most closely. 

Bruce Kassover: Okay, so now I come to you, I either, you know, go directly like you're saying is something that that can be done, or I am referred to you through my primary care physician. What is that introductory appointment like? What did we first start to talk about? 

Dr. Erin Forster: Well, you would first kind of come through our intake. We'd collect vital signs. Sometimes we collect patient surveys on what's important for them for that visit today, what symptoms they might be having. And then you would meet with one of our providers.

We are a teaching institution, so there are residents and fellows in the clinic, and they often will do some of the data gathering on the front end, asking what your primary symptom is. “Are you having changes in stool frequency or having blood or something like that?” And then I would come in to do the visit.

In terms of this is the workup we're planning, we're fortunate in that we practice in what's called a “patient-centered medical home.” So a medical home is less a reference to a brick and mortar structure, but rather a reference to having many services under one roof. So we have a full time dietician, a specialty pharmacist, and a behavioral health social worker. I also call her our fairy godmother. And so she can help connect patients to resources in the community. She can help teach mindfulness and coping strategies because patients with IBD often struggle with anxiety and depression. And so we want to make sure all facets of IBD are addressed. 

In our clinic, we've developed a new patient packet that kind of includes some basic information on what is Crohn's and ulcerative colitis. We also have information on typical medications that we use in the treatment of IBD. We also have a flyer for kind of urgent needs and how to navigate if you feel like you're having a flare at home and things like that so that patients aren't in the dark when they're at home and not necessarily in a clinic visit.

During the course of the visit after meeting with me, you could meet with any of those providers I just mentioned, the dietician, the pharmacist, or the behavioral health social worker. We may even give vaccines or draw blood work and then provide an after-visit summary to make sure that things are going well, tidied up in a bow. 

Bruce Kassover: Well, that's got to be really encouraging. I would imagine that if I'm somebody who's looking to get medical treatment, it's nice to know that it's not just, I know you were joking about being a plumber, but it's not just looking at the pipes. It's looking at the whole person, and that's got to be something that would be very encouraging, especially considering the emotional component that does go along with these sorts of conditions.

Dr. Erin Forster: Absolutely. And we recently have integrated a new technology into our clinic. We use intestinal ultrasound. So I've been trained on using kind-of point-of-care ultrasound to take a look at areas of inflammation. And that allows us to kind of have a heart-to-heart right then and there in an appropriate setting. So, you know, as opposed to waiting for a colonoscopy or sending off for an MRI or CT scan, the intestinal ultrasound allows the patient to be there, awake, no prep, and looking and seeing the same things that I am. So it's, it's rather moments of honesty, you might say. 

Bruce Kassover: You know, I always imagine that the name of the instrument that you use for that should be a ‘colitis-scope.’

Dr. Erin Forster: Yes, absolutely. 

Bruce Kassover: So we're having a discussion. We're talking about symptoms and related things. What sorts of tests would I have done to help sort-of narrow down what my condition is and what my prognosis might be? 

Dr. Erin Forster: Sure, we often do blood work and stool testing to start. I know the prospect of perhaps collecting stool isn't the most appetizing.

I hope that those of you who are listening aren't trying to eat breakfast or lunch right now. We often combine this with cross-sectional imaging, like a CT scan or an MRI, depending on patient specific factors. And I am an endoscopist by trade, so oftentimes it will include a colonoscopy so we can get a direct visualization of what's happening on the inside, because sometimes the tests I've just mentioned don't give us a hundred percent of the picture.

And often that intestinal ultrasound can add another piece or layer to the puzzle. So it won't just be one straight test. Like, for example, if you're having your blood pressure measured, but rather an aggregate, if we put all of those pieces together to determine, does this seem like Crohn's? Does it seem like ulcerative colitis or does it seem like something else?

Bruce Kassover: I can sympathize so much with what you're saying, because every single day, I am stared down by this Cologuard box in the corner that's looking at me and telling me, “Use me,” and every single day I come up with a reason to just walk past it. So, I do know that you talked about how this is, you know, not something that people are all that excited about. How difficult is it even to get people to just talk about this stuff, let alone actually take action? 

Dr. Erin Forster: Well, Bruce, you bring up a really good point. It isn't something that is a dinner table conversation necessarily, but I think programs like these and other advocacy programs work very hard to make sure patients feel comfortable sharing what's going on in their body and not feeling ashamed about it.

So I joke about the plumber part, but it actually is really, really the case. I want to know what's going in you and what's coming out of you. Is it conveniently timed? Is it painful? Does it have blood associated with it? I can say that blood often will bring patients to the office more rapidly than, let's say, cramps or mild abdominal discomfort.

And so, I do recognize that it's a big ask to come to the office at all. We do try to help make it slightly less unpleasant in terms of how we collect stool. There are some home collection options. And I'm even in discussions with an inventor about a smart toilet. So there won't have to be any stool handling. We're, we're a little bit far off on that one, but I do recognize that sometimes these monitors are considered private, but I hope to create an environment in which patients feel comfortable talking about what's coming out. 

Bruce Kassover: I imagine that that's one of the things that as you're, the longer you're in practice, the better you get at putting patients at ease and helping them open up. And I guess that just by reaching out to you, they've already sort of crossed the biggest hurdle, which is, you know, them taking some sort of proactive steps. Once they're in the office, is it easy to get them to start to discuss their problems in a way that helps you really understand what's going on?

Dr. Erin Forster: For the most part, yes. Fortunately, in these in the age of phones with cameras, sometimes a picture is worth a thousand words. And so, if someone might feel less comfortable talking about their stool frequency, color, caliber, then, then a few pictures usually will do the trick. So we hope to, we hope to engender a good environment for those types of discussions.

Bruce Kassover: So if I come in, you mentioned how you're going to go through a number of diagnostic steps to try and identify what the condition is. We've been speaking about a number of different conditions throughout. Can you maybe talk about the sort of universe of different conditions, what the differences are and the similarities and some of the different things that patients might be diagnosed with?

Dr. Erin Forster: So, under the umbrella of inflammatory bowel disease, usually they're considered two main conditions, Crohn's disease and ulcerative colitis. And you might have guessed by the name, ulcerative colitis affects the colon primarily, whereas Crohn's can be an inflammatory condition that can affect anywhere from the mouth all the way to the bottom.

Sometimes the presentation can be with diarrhea, sometimes it could be bloody diarrhea, sometimes it can be associated with abdominal pain. Or abnormal weight, for example. Sometimes the IBD can be preceded or followed even by what we call extra-intestinal manifestations. So these are findings on your body that are associated with this condition, but might not always be so obviously connected.

We have joint conditions, like certain joint pain, ankylosing spondylitis, or other. what we call arthropathies or inflammatory conditions of the joints. There are also dermatologic conditions, ones that are painful bruising on the shins or kind of another erosive condition of the skin called pyoderma.

Sometimes we share patients with ophthalmologists. A patient might have redness of the eye or painful swelling of the eye like uveitis. And so we are often co-managing these patients with the specialties that I just mentioned. It's certainly a collaborative effort. 

Bruce Kassover: This is really interesting to me because obviously if you, if you have a bowel condition and you see that you have bowel symptoms, that makes perfect sense. But now you're talking about eyes and joints and all these other things that to a layperson sound really unrelated. What is going on in your body that you could have all of these different manifestations from the same disease? 

Dr. Erin Forster: Well, so, we think of IBD as a relapsing and remitting inflammation condition. It can be triggered by genetics, the environment, and certainly the microbiome, or the bugs that live in our guts, and their interplay. So IBD is a situation in which our immune system is overloaded, unnecessarily over activated. 

And so we use the word ‘mucosa’ to describe the lining of many parts of our body. The most obvious one is probably the guts, right? The lining of our mouth, the lining of our esophagus, stomach, and all the way down through our intestines. But we have kind-of linings of other areas as well. So like our eyes are covered with a lining. Our joints have certain lining that protect and keep certain spaces separate from one another. So that's the reason why we share kind of inflammatory conditions between that. And if you think about the skin, it's the lining that covers our whole body. And so if inflammatory bowel disease is the GI version of an overactive immune system, then those other conditions would be their respective specialties’ overactive immune system.

Bruce Kassover: That's really interesting. So are these conditions things that can run in families as well? 

Dr. Erin Forster: That's a great point, Bruce. Yes there is a genetic component to inflammatory bowel disease, though it's a single digit frequency for, in terms of transmissibility, with one parent affected, but when you have two parents that are affected it can be in excess of 30% concordance, we might call it, but just because you might have IBD and you have children, you don't have to worry about it, be automatically worried that they're going to get IBD. There are many factors going into its development. For example, sometimes patients will develop IBD after a particularly bad bout of infectious diarrhea. But again, not all infectious diarrhea will lead to IBD. Some patients may be diagnosed with IBD young in their life, like in their teens and 20s; other patients may not be diagnosed until their 6th or 7th decade. And so, IBD kind of is on the radar throughout life, but we're well equipped to manage it. 

Bruce Kassover: And that's also very interesting. Are there any sort of general demographic similarities in certain groups that might make certain types of people more vulnerable, more susceptible than others?

Dr. Erin Forster: Well, there have been some studies to see if particular racial or ethnic groups are particularly at risk. And there is data showing that patients with Ashkenazi Jewish heritage are at slightly increased risk. Beyond that, we used to consider it a kind of a first-world disease with other more infectious conditions affecting the third world.

But as our what we consider ‘Standard American Diet’ or ‘SAD’ diet has kind of expanded throughout the world, we, along with it, kind-of has come increasing incidents of inflammatory bowel disease in the developing world. Studies have been done around increasing incidents in the Asian population, in the Hispanic population, and here in Charleston, we have also found increasing incidence in the African American population. So it's important to keep on our radar kind-of across the board. It's not so much a disease of affluent whites as previously it was considered. 

Bruce Kassover: That's very interesting to know. And you did mention about how parents may, justifiably or not, be concerned about their children. Are there certain environmental factors that we might want to try and avoid or address that that might help reduce chances of somebody developing one of these conditions or worsening a developing condition? 

Dr. Erin Forster: Well, that's a great question because a penny of prevention is worth a pound of cure. I often ask for certain environmental exposures in childhood. That can start by, were they full term or pre term, were they vaginally delivered or C-section, was there a lot of antibiotic exposure as a child?

Those type of things have had correlations – but not necessarily causation – for inflammatory bowel disease because frequent antibiotic use, for example, can affect the microbiome. There is some thought that less antibiotics is better, but I think that probably can be extrapolated across many conditions.

There's even some data around, “Will an appendectomy help prevent inflammatory bowel disease?” And I don't think for any of the things that I've mentioned before that we can say with certainty if you don't give your children antibiotics throughout their childhood, they definitely will not get IBD. I do not think that that's the case, but certainly judicious use of antibiotics is recommended kind of across the board for what we call ‘antimicrobial stewardship.’ So, using antibiotics when it's appropriate at the right dose and duration, finishing your course as prescribed, not early, and not kind of taking them on an as needed basis. 

Bruce Kassover: Yeah, that's something that I've certainly heard before, not even regarding the sorts of conditions that we're talking about, but just in general, that we really need to be much more cautious about the use of antibiotics because of things like the rise of antibiotic resistant bacteria, you know, things like MRSA that are really, really troubling as well. Are you seeing that sort of thing in your practice also? 

Dr. Erin Forster: Yes. So antimicrobial resistance is something that comes up. I think it's very important because certain antibiotics, when used inappropriately, can also predispose to other types of infections, like C. difficile, which is and can be a very severe infectious diarrhea that can lead to complications that are unique to inflammatory bowel disease patients that we really wish to avoid, things like toxic megacolon.

I think one of the other environmental risk factors that I probably brushed over inappropriately before is diet. So again, there's no diet necessarily that will prevent you from getting inflammatory bowel disease. But patients who have IBD often do well on a Mediterranean diet as opposed to the SAD diet I referred to earlier. Less processed foods, slightly more plant-based, less preservatives, are always a good idea. There have been some studies on things like the specific carbohydrate diet among others, but we did have a very robust trial that compared the specific carbohydrate diet with the Mediterranean diet and they performed similarly.

Sometimes when patients are in a flare, we do advocate for a low residue diet, which is kind of a fancy way of saying a relatively low fiber diet. If patients are flaring a little bit, but they can't be so specific, we do often use the BRAT diet. BRAT stands for bananas, rice, applesauce, and toast. It's kind of like when we dial back the complexity of what you're eating to make it easier for our guts to digest what they can instead of just kind of sending it right on through.

Bruce Kassover: So this sounds like there are just a lot of different approaches based on what the patient is presenting. So I'm getting the idea that more than anything, this is not the sort of thing that you can handle on your own, that when you're starting to experience these problems, you really have to have the guidance of an expert to help you make the right decisions. You can't just sit there and say, “Oh, I'm going to try this diet today,” without having any idea whether or not that's going to be at all helpful for you. Is that a fair thing to say? 

Dr. Erin Forster: Well, I think you bring up a very good point, Bruce, and that's one of the reasons that we try to practice in this medical home context. So having a dietitian on staff to answer some of the more straightforward questions, but also kind-of hold a patient's hand virtually or in-person about what diet might be a good fit for them and particular challenges and successes that they have with a variety of diets.

Sometimes we have to do an elimination diet, and that's kind of like we take a lot of things away and then slowly. and carefully reintroduce them. We do recognize, you know, IBD is a team sport. And so we want to make sure patients feel supported throughout it. And especially if you consider food is a medicine, it's probably a medicine that we take two, three, sometimes even five times a day if you're counting snacks. So we want to equip patients with the tools to help make the best decisions for them. 

Bruce Kassover: So, you run the tests that you're going to be running to help narrow things down, and we come up with a diagnosis. What sort of treatments are available? What sort of treatments can I expect might be presented to me?

Dr. Erin Forster: That's a great question. And we practice in a world now with more medications even when I was then when I was going through fellowship, and even more medications than decades prior. So I have actually created an Excel spreadsheet of all the advanced therapies that I have laminated and bring into the visit, because it can be kind of overwhelming to see all of these names of medications that are hard to pronounce, and thinking about, you know, infusion- and injection-based therapy sometimes can be rather intimidating. The general premise that guides therapies for inflammatory bowel disease are ones that modulate the immune reaction. So we help make that immune system response a little less intense so that we're not unnecessarily kind of existing in this red zone.

Sometimes it does involve limited use of certain drugs. Steroids, sometimes prednisone, or sometimes less systemically absorbed medications. We try to avoid medications like Advil, Aspirin, Aleve, Ibuprofen, because those medications, though it sounds like perhaps an anti-inflammatory medication might be good in this situation, they can actually make the situation worse or exacerbate it.

So we usually will take a medication, sometimes it's a pill medication, sometimes it's an injection or infusion medicine, combine that with perhaps some dietary interventions as well as some behavioral health interventions like helping patients be more confident in managing their social situations with their guts.

This kind of speaks to the importance of what we call ‘shared decision making.’ So it seems probably obvious or intuitive that there would be shared decision making conversations between patients and providers, but it's actually one of the tenets by which we take care of patients on a regular basis.

It's important for me to know what matters for you. Is there a needle phobia that might be at play? Is getting to a doctor's office regularly for an infusion going to be a challenge? Is there difficulties remembering to take a pill every day? Those are kind of all the ingredients that I put together when I present the options to a patient, and we work through what might be the best fit for them.

Bruce Kassover: That sounds like it makes a lot of sense. I can imagine that that spreadsheet has got to look like, you know, like something from a major accounting firm, just guessing from all of the commercials that we see for all the different medications. I could probably sing jingles for them all to you.

Dr. Erin Forster: Yes, we are fortunate in that we have a very full toolbox of medications, but in that is kind of a blessing and a curse because we've learned over time that sometimes the first medications are the best ones. And so we want to be diligent and thoughtful about our selection of those medications because it can impact the effectiveness of future medications. And so, much like we want to be good stewards of antibiotics, we also want to be good stewards in our selection of some of the advanced therapies for patients with IBD. 

Bruce Kassover: So, in some cases, what you're saying is that the medication you take today could have an influence on the effectiveness of the medication you might take down the road sometime?

Dr. Erin Forster: Yes, you're exactly right. 

Bruce Kassover: Wow, that's really, really interesting. What is the sort of efficacy of some of these medications that we do see? 

Dr. Erin Forster: I had hoped you weren't going to put me exactly on the spot for efficacy because we do have a therapeutic ceiling, which is kind of a fancy way of saying there is kind of a top in terms of percentage of efficacy.

Usually that's around, say, 30 to 50 percent kind-of across all therapies for patients who require an advanced therapy. Now, that's not to say that only we're only successful in taking care of patients 30 to 50 percent of the time, because as I mentioned, sometimes IBD is a waxing and waning condition.

You have periods of goodness and periods of less goodness. We call those flares. And so we strive to keep patients in remission or at least out of a flare for as long of a stretch as possible until it kind of gets punctuated by a flare. But long periods of remission are very much possible and certainly a priority for IBD providers across the world.

Bruce Kassover: So, when you do have a flare, is there any typical idea of how long they usually last or is that something that really varies from person to person? 

Dr. Erin Forster: It does vary from person to person, and we try to get you out of a flare as quickly as possible, but we do have to balance kind of risks of particular medications for flares.

So, I kind of started to paint a bad picture of steroids like prednisone and, you know, fortunately that's supported by guidelines because long-term steroid use has very significant negative side effects, whether it's bone density concerns, infection concerns, fluid retention concerns, sleep disturbance, mood alteration, there's a whole list of reasons why steroids are the bad guy here. But it very much can be the Band Aid in the short term that kind-of gets us over the hump. But if a patient or provider notices that they're requiring steroids for a flare very many times in a year, then it's probably a good time to take a look at their therapy overall and whether or not it needs to be changed or optimized or adjusted.

Bruce Kassover: Isn't there sort-of a limit to how often or how long you can take steroids before they start to just lose effectiveness for you? 

Dr. Erin Forster: I would say there are patients who are steroid responsive and those who are what we call steroid refractory, meaning the steroids don't do anything for them. And frequently, when a patient is steroid responsive, it can seem like the right choice to just want to go back to the steroid if you're having frequent flares.

But the long-term consequences of that are worse than finding a medication that better meets your needs for control of inflammation associated with IBD. 

Bruce Kassover: Makes sense. So I'm taking medications. Let's say that I'm one of those people who is not really getting the sort of response that I'm hoping for. What would the next steps be? 

Dr. Erin Forster: Well, often it would be a clinic visit where we talk about exactly which parts of your day-to-day life are being affected by this flare or this continued flare or this feeling that you haven't been getting better. We'll probably get some labs to see what your inflammatory markers are doing, and oftentimes it will involve a scope just so that we can know how much of your guts are inflamed or affected or not. Because sometimes you can have irritable bowel syndrome, which sounds a lot like IBD, but is different, IBS, that might be overlying the inflammatory condition. 

And so it's very important that we nail down what's actually going on: “Is this an inflammation problem?” We may ask for stool tests to rule out infection because infections of the gut can be slightly more prevalent or common in patients who have IBD. And so we'll often check for those type of infections and treat them if needed. And if there's neither infection nor inflammation, then we can work on symptom management with medications that can help reduce spasms or discomfort or adjust stool frequency.

Bruce Kassover: You know, I'm a very easily confused person, so maybe for the benefit of other people out there like me, can you talk real briefly about what the difference is between IBS and IBD? 

Dr. Erin Forster: Yes, so you're not the only one. It is a commonly confused topic. So, if you just remember that IBD is usually Crohn's and ulcerative colitis, and if it's not one of those, it probably is IBS.

IBS, Irritable Bowel Syndrome, is a condition that affects one in 10 Americans. I would say more than 40 million people in America have irritable bowel syndrome. My job security would be even better if that were the case for IBD, but I wouldn't wish that on anyone. The incidence of Inflammatory Bowel Disease is around two to three percent.

So, most often, patients will be having been diagnosed with Irritable Bowel Syndrome. And the definition for Irritable Bowel Syndrome is abdominal pain that's been going on for at least three months that's associated with a change in stool caliber or consistency. So is it thinner? Is it looser? Is it more frequent? And that, that pain changes when you go to the bathroom. So does it get worse? Does it get better? Those are the criteria that are needed for diagnosis of irritable bowel syndrome. 

And it comes in a couple of flavors, IBS-D or Irritable Bowel Syndrome with Diarrhea; IBS-C, Irritable Bowel Syndrome with Constipation. There's also a mixed type and an undifferentiated type. It kind of just depends on how your stools are looking as to which category you fall in. But again, they are separate. But I'm going to add one layer of kind of confusion to it because patients can have both, but the medications we use for IBD generally will not have an effect on the IBS symptoms.

Bruce Kassover: Wow, that's interesting and it's more evidence of why this is not the sort of thing that you want to be self diagnosing, trying to address on your own.

Dr. Erin Forster: Dr. Google can be a pretty deep hole, so I would really, strongly recommend using what we might consider approved resources when doing your online reading. The Crohn's and Colitis Foundation has excellent resources for learning more about IBD. 

And actually, there are fairly reasonable kinds of self-help resources for IBS. One of my close friends and colleagues who is a GI psychologist at the University of Michigan recently published a book called Mind Your Gut in partnership with a dietician, Kate Scarlata, who's done a lot of work in the IBS space. And so I think that these ladies have done a fantastic job of putting into words what people are looking for in terms of managing IBS issues. Acknowledging the mental health and psychological component of our GI system. 

So, I don't think I've mentioned it yet, but the GI nervous system is almost as robust as the nervous system that lives in our brain. And so when the two of them start talking either too much, too little, or accentuating certain things, it can really go haywire. So that's why I have a behavioral health social worker in my clinic who deals with our GI psych needs. But it's not just IBD patients that have those concerns. IBS patients also can have those same concerns.

Bruce Kassover: I have to say that doesn't sound surprising because a lot of what we talk about when we talk about bladder conditions is about the brain-bladder connection and treatment methods like neuromodulation that try and address that. Are there similar sorts of treatments for bowel disorders that there are for bladder disorders, like neuromodulation, addressing the nervous system’s relationship to the bowel as well?

Dr. Erin Forster: Yes, there are. We do use medications that are technically considered antidepressants or other neuromodulators for the IBS side of things. So, it wouldn't be uncommon for your doctor to maybe talk to you about amitriptyline or other things. And. It's pretty remarkable because those neuromodulator medications can affect your stool frequency.

So, some of them are associated with faster stools, slower stools. And so if you already have a patient who's suffering from diarrhea, it might beg the question of whether or not certain neuromodulators might be better or worse, in fact, for their condition, if it slows them down further or speeds them up further.

Bruce Kassover: And beyond that, what about surgical treatments? Are there surgeries that might make sense for certain patients as well? 

Dr. Erin Forster: Yes, so we do have a close collaboration with our colorectal colleagues, which is something that I would say is an important feature when you're looking for a provider to make sure that they know colorectal surgeons who are, have a good relationship with them.

Sometimes surgery involves elective removal of certain parts of the colon or small intestine. Sometimes it can happen a little bit more urgently if there's issues with infection or other more serious complications like fistula. But we really believe that the best IBD care happens in the outpatient setting rather than in the hospital. So we try to like run a tight ship outside of the hospital, but sometimes hospitalizations are required. And sometimes surgeries are required. 

Bruce Kassover: And do you find that the results of those are generally pretty satisfactory to the patients? 

Dr. Erin Forster: Yes, it's very important that we've had thoughtful discussions before surgery, both with the patient and the surgeon, about what we hope to achieve.

There are some less glamorous parts of surgery related to the bowels, because sometimes ostomies are, kind of part-and-parcel of those decisions. So, an ostomy is when we have to drain our stool material outside of our body into a bag that's usually on the belly. And our hope is that those ostomies are temporary situations, but there are situations in which that might have to be a permanent thing or something that we couldn't reverse to what we call, restore intestinal continuity or put pieces back together.

But we work really hard to keep kind-of a list of volunteer patients that have gone through surgeries in the past with and without ostomies, with and without plans on having kids, and at various stages in their lives to kind of make the situation more tenable and approachable to our patients as they're going through the same things.

Bruce Kassover: Yeah, we have heard from patients before who said that, of course it was, hearing that this is something that they might need is one of the most frightening things that they've ever heard in their lives. But at the same time they say, “You know what, after I got it done, it was life changing in the most positive way possible.” It gave them back their lives when they really were isolated, depressed, in discomfort and pain, and suffering beforehand. So, it is one of those things that we've heard really can make a dramatic improvement for people if they are just willing and ready to go through the procedure. 

Dr. Erin Forster: Yes, and I think that those patient connections can be some of the most valuable, and so we often are asking our patients if they're comfortable speaking with others about their journey. Everybody's journey is different, but hopefully, if we can help patients feel a little bit more comfortable about it, the overall results will be positive. 

Bruce Kassover: So bringing it back to the beginning, then, if I'm a patient who's just on the start of my journey, are there any sorts of tools or diaries or trackers or anything like that that you think could be helpful as I'm getting ready for my initial consultation?

Dr. Erin Forster: Well, we talked about how sometimes people don't like to talk about their story. There is what's called a ‘Bristol Stool Scale’ that talks about shape and consistency of stools that can be used to describe things if you just want to use numbers instead of words. Having a food diary can also help us know if there are particular environmental dietary triggers that might make symptoms better or worse, kind-of keeping track of how often you're going to the bathroom, especially if you're having to go to the bathroom at night to pass stool. Those are things that can help us know the severity of the inflammation that you might be experiencing. 

Bruce Kassover: So, Dr. Forster, we've talked a lot about the physical side of things, maybe you could tell us a little bit about the emotional side of things, especially considering how often patients wait far too long to actually reach out to a physician and start their way on the treatment path. They have a lot to deal with and a lot to struggle with on their own. What do you see from, from an emotional perspective? 

Dr. Erin Forster: Well, facing the potential or actual diagnosis of Inflammatory Bowel Disease can be very scary. And as you mentioned, sometimes it can take a long time, not necessarily because of anything patient-related, but sometimes putting the pieces together from a provider perspective can also be a challenge.

I had mentioned earlier that anxiety and depression are unfortunately relatively common in patients with inflammatory bowel disease. More than a quarter of patients experience symptoms of varying severity. I'm so grateful to have my behavioral health social worker in clinic with me. She offers services like coping with chronic illness. She teaches progressive muscle relaxation and mindfulness strategies. And that book that I mentioned does also have those techniques, including things like diaphragmatic breathing. So there's certain breathing techniques that can help ground patients in the moment and recognize that they still do have control over what's going on in a situation.

And so, I think that once you’ve found a provider, ensuring that they do have emotional health resources available is of the utmost importance. And actually, I think as a silver lining from the COVID pandemic, we have experienced. services that are kind of telemed services that are available. There are subscription and non subscription emotional health services that are applicable to patients who have inflammatory bowel disease or family members even.

I think that one of the things that patients do very well with is having caregivers join them for their appointments because having these mitigation strategies like progressive muscle relaxation can be equally as important for them as it is for the patient themselves. 

Bruce Kassover: I'm glad to hear that. I mean, getting support from all of the different facets has got to be something that really is essential for patients to really find themselves on a rewarding treatment path.

But there's one more thing we hope patients get out of this. As you know, the name of the podcast is Life Without Leaks. And I'm wondering if you have any one tip that patients can take away to help them to live a life without leaks, or maybe a life without a bowel issue. 

Dr. Erin Forster: So, I think it's really important to be your best advocate and work towards shared decision making with your provider. I mentioned before that IBD is a team sport. I don't see it as a situation in which a provider is kind-of dispensing medications without any patient consideration. And so, being able to feel confident in expressing your wishes, whether it be about a particular medication or a desire to travel often, or perhaps an emphasis on nutritional things, or more conservative measures rather than jumping to medications first, having a provider that's willing to listen and try to craft a treatment plan with you will help you to be the most successful.

Bruce Kassover: Well, those are excellent words of wisdom. And I hope that patients and people who are out there who are just beginning their journey towards treatment take those words to heart. 

Dr. Erin Forster: Thanks so much, Bruce, and the National Association for Continence, for inviting me on a Life Without Leaks. 

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.