The Esophageal Center: Using a Multidisciplinary Approach ...cdn.patientpower.info/p2docs/transcripts/NMH0110910.pdf · condition you think of, of course, is GERD, where there's acid

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The Esophageal Center: Using a Multidisciplinary Approach to Improve Quality of Life Webcast November 9, 2010 John Pandolfino, M.D. Melissa Tierce Please remember the opinions expressed on Patient Power are not necessarily the views of Northwestern Memorial Hospital, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. Introduction Andrew Schorr: Disorders of the esophagus can range from GERD or acid reflux disease to eosinophilic esophagitis to Barrett's esophagus and even esophageal cancer. Coming up, a leading gastroenterologist from the esophageal center at Northwestern Memorial Hospital will discuss these disorders and how they're treated. And we'll also meet a woman who has been living with one of the conditions. It's all next on Patient Power. Hello and welcome to Patient Power. I'm Andrew Schorr. This program, like so many, is sponsored by Northwestern Memorial Hospital where we connect you with leading experts and discuss significant medical conditions. Well, we're going to talk about swallowing and the esophagus and disorders that are related to that, and unfortunately many, many people are affected. Now, one condition you think of, of course, is GERD, where there's acid reflux, and, you know, it all comes back up and you have heartburn, and it can be very unnerving. Now, there are over-the-counter medicines available and prescription medicines. Sometimes more is needed, and you also want to understand what you're dealing with. There are also people with an increasing condition of eosinophilic esophagitis. We're going to learn about that and also what can be done and research going on. There's a condition called Barrett's esophagus that we've talked about in another program with a Northwestern expert, and we'll mention that along the way. And of course there are always concerns about malignancies or nonmalignant obstructions as well, what can you do. So all of that is what we're discussing on this program. Let's begin by meeting an expert from Northwestern. That's Dr. John Pandolfino. He's a gastroenterologist at Northwestern. He's an associate professor of medicine at the Northwestern University Feinberg School of Medicine, and of course he's a leader at the center there for esophageal disease and disorders. Dr. Pandolfino, first I mentioned GERD. How common is that? Gastroesophageal Reflux Disease (GERD) Dr. Pandolfino: Well, GERD is actually an extremely common disorder, and it really is qualified by the severity. Now, many people have just run-of-the-mill heartburn where they

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may have dietary indiscretion and note that they're going to have a little bit of a stomach upset or even a burning sensation in their chest afterwards, and those people can get away with maybe intermittent antacids over the counter. What really qualifies somebody as having GERD is really the severity and frequency of the symptoms. Once these symptoms get to be about two to three times per week where they're requiring some type of intervention, then they really get characterized as GERD because then they subsequently will probably need more of a chronic therapy. And it's a pretty common problem. It's one of the most common problems that are seen in the gastroenterology office. It's about seven million ambulatory care visits per year, and almost 20 percent of all the visits that a gastroenterologist might see are related to gastroesophagus reflux disease. So, certainly a very big problem in terms of the numerical burden that we have. Andrew Schorr: And you need to get it worked up. I know for me, I've had sometimes, you know, pain in my chest, say, oh, my god, I'm having a heart attack. Fortunately, there were no other symptoms, but then it turned out to be this severe heartburn. So there's a lot to check out. Dr. Pandolfino: Yeah, and I think one of the things that is very important, a lot of things get thrown into almost a lump of GERD in that there are a lot of things that are not GERD that are considered GERD. But GERD can mimic heart problems, and certainly one of the most common causes of noncardiac chest pain, in fact--what we joke around and say the top three causes of noncardiac chest pain are GERD, GERD and GERD. So when you're dealing with someone with noncardiac chest pain your first obligation is to rule out reflux disease and at least give the patient a trial of very potent anti-secretory or acid suppression therapy, which would be a proton pump inhibitor. And if the patients respond to the proton pump inhibitor and their chest pain gets better, then that's most likely gastroesophageal reflux disease. Andrew Schorr: Now, sometimes people will need to be scoped, right, to take a look at what is going on, what does the inflammation look like, or is it there? Dr. Pandolfino: Sure. It's kind of a controversial topic, but I think most gastroenterologists believe that everyone who has had chronic GERD symptoms should at least get one upper endoscopy to really assess the presence of esophagitis and also to look for Barrett's esophagus. Now, if people have severe esophagitis it certainly means that they're probably going to be relegated to lifelong therapy, whereas people who don't have esophagitis or maybe have very mild esophagitis might be able to get away with some intermittent therapy.

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And then as we mentioned and you highlighted in the introduction, we're always concerned about Barrett's esophagus, which is a premalignant condition, although it is important to stress that that is extremely rare, Barrett's esophagus, and it's also extremely rare to get esophageal adenocarcinoma. So I don't want to give the impression that those are very common things. GERD is extremely common, and then the prevalence of Barrett's esophagus and of course the incidence of cancer in people with Barrett's is also very small. Andrew Schorr: And Barrett's is where you get this inflammation in the lining of the esophagus that's been caused by this recurrent reflux? Dr. Pandolfino: It's not so much an inflammation. What happens is is because of the inflammation from reflux the tissue down at the end of the esophagus tries to get a little bit smart, and it tries to change to a different type of tissue that might be a little bit more resistant to acid. And some of those tissues are stomach-like tissue or even small intestine-like tissue. And technically we believe that the small intestinal type of tissue is really the tissue that makes up Barrett's esophagus, but there is some debate about that, and some people consider any type of tissue change there, what we call metaplasia, when the tissue changes to another tissue, as Barrett's esophagus. So that's really an adaptation and the tissue trying to be a little bit smarter. But in turn, because it changes is actually predisposes to malignancy. Andrew Schorr: And, as I mentioned, we did another whole program with one of your colleagues from Northwestern about Barrett's esophagus and also the concern about cancer. So we'll have a link to that; and I urge people if they're concerned about that to give a listen to that. Another huge area that you deal with is swallowing problems, and I want to introduce another guest, and that's Melissa Tierce, who is with us, 39 years old. Melissa, let's just flash back to high school years for a second, there was an episode you had in high school that really scared you. What was that? Melissa’s Story: Eosinophilic Esophagitis Melissa: My family was eating steak for dinner one night, and I was chewing a piece that got lodged in my throat, and I couldn't swallow after that point. I had to stop eating. And I'll tell you, it's kind of sad and funny at the same time. My dad, even though I wasn't choking on it, knew I was, you know, breathing fine. I just couldn't swallow anymore, tried the Heimlich on me to try to get it back up, which of course did not work. After a few hours it finally went down on its own.

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Andrew Schorr: You went on to college and had some stomach problems and some swallowing problems and then would wax and wane. Melissa: Mm-hmm. Andrew Schorr: And then your little boy, Tristan, now eight, was diagnosed with some real esophageal problems. You know, again, yours are real too, but, I mean, he had significant problems. You were concerned in your child. And then you got worked up and found out you had the same condition. Melissa: Correct. Andrew Schorr: Eosinophilic esophagitis. Melissa: Correct. Andrew Schorr: So, Doctor, what is that? Dr. Pandolfino: Well, eosinophilic esophagitis is what we call a new disorder in esophagology, and I think it's probably not that new. It was just really underrecognized. But it's certainly a disorder that's increasing in incidence, and it's really associated with an allergic reaction or allergic pathogenesis in the esophagus. And most people believe that it's probably related to some type of food, because we certainly have very good evidence to support that if we eliminate foods we can completely reduce or completely heal the entire esophagus with this. But, once again, there are also some hypotheses that this may even be something in the air we breathe because there are certainly some people who, even if we eliminate everything, they still have these symptoms and sometimes the symptoms are very seasonal, which goes along once again with this whole allergic component to it. So what happens is is the mucosa, or the lining of the esophagus, is slightly interrupted so that the antigen that would cause this allergic reaction gets exposed to the cells that would cause this cascade. And once this occurs, this inflammatory cascade, it recruits these eosinophils, and the eosinophils can cause a great deal of inflammation. It can cause a lot of swelling and edema in the esophagus, and then eventually it can cause rings and scarring. And that's really what gets people into trouble, is that they get this scarring in the esophagus. And it's not so much that it doesn't work as well. It's just almost a rigid tube.

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So you can imagine Melissa eating a piece of steak, and this esophagus that's narrowed, the steak just gets caught, and it's pure plumbing at that point. The steak is bigger than the tube, and it gets caught. So really the therapies are focused on reducing the inflammation through the allergic component and also trying to disrupt or at least make the tube larger with some techniques like balloon dilation. Andrew Schorr: We'll go through that in a minute. Let's just talk about a real-world example from the patient's side. So, Melissa, there you are as an adult at a restaurant. Tell us that story. Melissa: It's--you know, it was a point of really living in fear of going out to eat, because at least I knew if I were at home, it's my family, I know where the restroom is, you know, I can run to it. But eating out, I never knew. I knew which foods that were thicker or a little bit more difficult to swallow, I would just avoid when we were at restaurants. I'd always sit as close as I could to the restroom because I knew I had to get up quickly pretty much every time I ate. You'd start to figure out, okay, it felt like something was, you know, I'm having more trouble swallowing; it's probably going to get stuck in each bite now. Even though, you know, you're drinking lots and lots of water and eating small bites and chewing slowly and you'll always be the very last person to eat at the table, it was still one of those stressful situations. When you should be going out to eat and having a good time, I was always nervous about going out to eat, especially with new people around, because at any moment food would get stuck in my throat and you'd have no choice but to get up quickly and go to the restroom because if you drank or swallowed saliva or anything after you took that bite that was impacted, it would immediately come back out. Andrew Schorr: Wow. That would be scary. Melissa: The fluid would, not the food. Problems that Affect Swallowing Andrew Schorr: Yeah, but that would be scary for anybody. Now, we're going to talk about treatments and also what's worked for you and more about what the doctor was referring to with dilation and all that in just a minute, but you just a broader scope about swallowing disorders. So, eosinophilic esophagitis is one problem that can affect swallowing, as it did for Melissa. Doctor, what are others?

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Dr. Pandolfino: Well, it's amazing to me when you think about swallowing, how much we take it for granted. You know, it's a simple act that we do all day, and most of it is involuntary, that once we get the food to the back of our throat it's almost involuntary. I mean, we can try to control it a little bit, but once that occurs the chains of events are set in motion where the upper sphincter is supposed to open, the food is supposed to go into the esophagus and be moved down the esophagus in a nice, orderly fashion into the stomach. So anything that would cause that to be affected will cause dysphasia or trouble swallowing. And that could be anything as simple as gastroesophageal reflux disease. We know that gastroesophageal reflux disease is associated with some scarring and stricturing and that can give you difficulty moving food from the esophagus into the stomach. Even the motility abnormalities that we see with reflux disease, meaning that the motor function, the muscle function of the esophagus, may be impaired. There's also a whole host of other muscle disorders in the esophagus that can give you an uncoordinated propagation or just kind of a very confused esophagus. It may be going one way one minute and then all of a sudden is going retrograde or backwards the next. Then there are some diseases where the muscles don't actually relax well enough, and they'll actually sit there, and they'll be constricted at the lower esophageal sphincter, and it causes a functional obstruction so food can't get through there. So there's a whole host of inflammatory stricturing disorders. There are many different things that can cause scarring in the esophagus. One of the very common complaints that we have where there's scarring where people take specific pills, like antibiotics, nonsteroidal anti-inflammatory drugs, can really scar the esophagus and cause trouble swallowing. And those are really the problems. And of course, you know, we always worry about cancer, but once again I want to highlight that, that is a very uncommon presentation of a swallowing problem. And once again it's not something that we see in the early stages. It's usually when someone has ignored the problem for a very long time that they present with a malignancy. Andrew Schorr: Melissa, did you have pain with your symptoms? Melissa: Not at first. I mean, the first food impaction was my first symptom, but now as an adult and as years have gone by, yes. I have severe chest pain. I mean so much that it brings me to tears, sometimes. And as an adult, as I've gotten older, that's scary because I never know. Okay, well, is this a heart attack or is this having to do with my EE? So that pain is scary. I would like to know more about that.

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Multidisciplinary Team Andrew Schorr: Well, Doctor, you have a whole center at Northwestern for this. So it sounds like different specialties can come into play. You're a gastroenterologist, and you have a special interest in this with your colleagues. You mentioned about allergic causes, so I think that could come into play. How do you work together at Northwestern to try to figure out what's going on? Dr. Pandolfino: Well, I think when you deal with swallowing problems because it can impact the life of the patient, it can impact their ability to get proper nutrition, it can cause severe complications, you're almost obligated to approach these disorders with a multidisciplinary team. So we really have a team that incorporates both gastroenterology and surgery as the foundation for diagnosis and treatment, but we have a lot of help from our ancillary team, our dietitian, who will help patients eat a diet that is easy to tolerate in terms of their dysphasia symptoms. In addition, we also have psychologists who help us with the stress and anxiety. I think one of the most profound things that really gets to me as a physician is when I hear stories like Melissa's where patients are scared to go out and enjoy their life. They feel as if, you know, they can't go out and socialize, they can't go out on a date, and they can't enjoy family events. You know, the holidays, they get more nervous because if they're eating a Thanksgiving dinner they're going to have problems. So we try to think about the problem in parallel versions where we treat the disease, we help the mechanics, we relieve obstruction, but then in parallel we focus on nutrition, getting sure that the patient is getting the right amount of calories, making sure that the food that they're eating is easy to tolerate and not going to cause them problems. And then also we start working with them in terms of the psychological stresses, reducing the anxiety, maybe even utilizing hypnotherapy so that people are not as afraid or when they feel that obstruction they don't panic to the same degree or they don't get even the same pain via these kind of central modulations of pain perception that can occur with hypnotherapy. So you have to treat these problems with a multidisciplinary approach. And, once again, that's what we've really tried to do at Northwestern in our esophageal center. Andrew Schorr: Now, Melissa, you suffered for many years. Now you hear this, it makes a lot of sense to hopefully bring relief, right? Melissa: Oh, yeah.

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Andrew Schorr: Okay. Well, what we're going to do is we're going to take a quick break. When we come back we're going to start to learn how these treatments come together and how at the esophageal center at Northwestern they take a look at what's going on in your exact case. Is it one of these conditions, yes, no, which one? How severe is it for you? What approaches can work to get you back enjoying a full life, like Dr. Pandolfino was just discussing. We'll be back with more Patient Power right after this. Welcome back to Patient Power as we're visiting with Dr. John Pandolfino, who is a gastroenterologist at the esophageal center at Northwestern Memorial Hospital, he was just talking about multidisciplinary approach to really see what's going on for someone. Maybe they have GERD. Maybe they have swallowing problems. Maybe they have a more rare condition, Barrett's esophagus, or even a concern, fortunately not common, about cancer, and help people really get on with a healthier life. We also have with us someone who has lived with it, now in her family, Melissa Tierce, but also her young son has the same condition, which, unfortunately, is becoming more common in the United States, maybe an allergic something going on, eosinophilic esophagitis. So let's understand what's going on. Now, Melissa, you eventually were scoped or had upper endoscopy, right? Melissa: Correct. Andrew Schorr: And there were biopsies taken and that indicated that you had this high degree of eosinophils or white blood cells marshalling in your esophagus causing inflammation, and also the doctor noticed scarring, right? Melissa: Scarring and rings. Andrew Schorr: Okay. Melissa: Right. Evaluation and Tests Andrew Schorr: So, Dr. Pandolfino, let's understand that. Help us understand how you step through somebody's coming with swallowing problems or reflux problems. How do you go through it to see which tests or approaches might be needed?

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Dr. Pandolfino: Well, first things first is that a good history really helps you tremendously when you're dealing with people with swallowing problems, and your first decision to make is whether or not the swallowing problem is localized to the oral pharynx, meaning the mouth and the throat, or to the esophagus itself. And there are certainly clear cues to that. If someone tells you that they're choking, they're coughing a lot when they're eating, that they feel like they have nasopharyngeal regurgitation, where they'll eat something and it will come out of their nose, those are all signs that there might be something going on above the esophagus. Now, a lot of people, they say stuff may get caught in their throat, but people have a portability to localize where dysphasia is occurring, and that's really due to the fact that the perception of where the problem is is not great. In fact, about 30 percent of people who have a distal esophageal obstruction will actually point to their throat. So you have to take a good, careful history. The other thing that I do in my office always is that I actually watch people swallow, even a dry swallow or a couple sips of water to just get a sense as to how they're moving at least liquids, and sometimes I'll even give them a piece of candy or a marshmallow. Now, if someone tells me that they have liquid and solid dysphasia, then I start to think that there might be more of a motor abnormality, but if people have just kind of a solid food, steak, bread, chicken and so forth, then it's probably more of a mechanical obstruction related to some stricturing or scarring. Regardless of what I think, however, I'm probably going to wind up doing some first evaluation to rule out a mechanical obstruction. So we're almost obligated when someone comes in and says that they're having dysphasia, especially when we believe it to be in the esophagus, we're almost obligated immediately to send them for an upper endoscopy with biopsies. Because you can have a completely normal upper endoscopy but still have a significant eosinophilia, eosinophilic esophagitis, and a very poorly compliant or elastic esophagus that doesn't allow the food bolus to traverse down into the stomach. So once again all of these evaluations typically start with an upper endoscopy with biopsies. And if you've ruled out a mechanical obstruction, and if you've ruled out eosinophilic esophagitis, then you will use more fancy tests focused on assessing the motor function or the muscle function of the esophagus. And that's where we have a certain expertise at Northwestern in terms of using a technology called high resolution manometry, which gives you a very nice dynamic picture of the entire swallow complex as it traverses from the upper sphincter down into the stomach. Andrew Schorr: Now, what is this word "manometry"? What does that mean?

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Dr. Pandolfino: Well, it basically means that we're assessing the pressure patterns in the esophagus. So there are typically done with a catheter, small catheter placed transnasally. And the reason we place it transnasally is we don't want to put it through the mouth because then people will be gagging. So if you go transnasally you'll actually miss the gag center, and patients will be able to swallow and talk and act normally while they're doing this particular test. The test itself actually takes about 20 minutes, and on the catheter there are specialized pressure centers that are spaced about one centimeter apart, and they record pressure. So as someone swallows--we give them maybe a bolus of liquid or a bolus of apple sauce or even marshmallows--as they swallow you should be able to visualize a nice orderly propagation of the muscle activity down the esophagus, and you should also see the lower esophageal sphincter relax almost immediately after the swallow, and that's a typical normal pattern: An ordered contraction down the esophagus and relaxation at the lower esophageal sphincter. And if you have an abnormality with that then you probably have an esophageal motor disorder, and that would be treated very differently than something like gastroesophageal reflex disease or eosinophilic esophagitis. Andrew Schorr: So you first need to know what you are dealing with. Now, some do these barium swallows. Are there other tests that come into play? Dr. Pandolfino: Well, certainly barium swallow is another adjunct test where people will swallow barium and we'll take X-rays, but once again we can get a lot of this information from the upper endoscopy, which once again is mandatory for the evaluation of dysphasia. And then the manometry and some other techniques like impedance combine with the manometry will pretty much give us a very nice comprehensive picture of what's going on in terms of the esophageal function. Andrew Schorr: What's impedance? What's that one? Dr. Pandolfino: So impedance is another technology. Once again, on the same catheter that we do manometry there are actually these little metal electrodes that have a small current that is very innocuous, not dangerous, but that current needs something to traverse across an insulator. And it allows us to ascertain whether there is liquid, air or nothing in the esophagus. So by looking at the pattern of the intraluminal contents we can actually see the flow of the bolus without using radiation. And once again it gives us a little bit more information regarding the esophageal function.

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So at Northwestern we have one of the most advanced esophageal function units in the world, and we actually have people come from all over the world to spend time with us to learn how to use these particular techniques. Andrew Schorr: Now, Melissa, you mentioned that when you had an exam it showed scarring or rings, I think the word that's been used. What do we mean by these rings, Doctor, and what do you do about it? Dr. Pandolfino: Well, the rings, once the eosinophilic esophagitis occurs you can see rings but more focal rings or strictures with gastroesophageal reflux disease, once the inflammation takes hold there's always a certain degree of fibrosis and tissue remodeling that occurs because of the inflammation. And in particular in eosinophilic esophagitis there is definitely an inflammatory fibrotic kind of interaction where there is remodeling and replacement of the tissue in superficial and deeper layers with fibrosis. And when the esophagus becomes fibrotic it scars, and it becomes a narrow tube. And you can see actually these rings of fibrosis down the esophagus. And the importance of these particular rings is that this is really what causes the problems. This is where the food gets caught up. Andrew Schorr: So this fibrotic tissue or I think of it as scar tissue in a way, it doesn't move the way a healthy esophagus should. Dr. Pandolfino: Exactly I mean, we all have some degree of remodeling and some degree of fibrosis that occurs, but that fibrosis kind of gets remodeled and taken away so that our esophagus can be like this very floppy, compliant balloon; because if it's stiff then food will get caught. Treatment Options Andrew Schorr: So what do you do? You mentioned at some point about dilation… Dr. Pandolfino: Mm-hmm. Andrew Schorr: --or trying to break these bands. Is that something you do at Northwestern? Dr. Pandolfino: Definitely we do that. First off, we always try to treat this medically, so we'll try acid suppression, and we'll try inhaled steroids but swallowed, so we'll use actually steroid inhalers and have the patient swallow it so we'll get a nice topical anti-

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inflammatory state or effect on the esophagus. And I believe Melissa is on both of those particular medicines. And what that does is that that starts to control the inflammation. Now, sometimes by controlling the inflammation the scarring will get better and the rings will go away, but a majority of the time the rings actually stay because there's already scarring in place and it's hard to remove that scarring. So in those particular instances, what we'll actually do is we'll place a balloon or something called a bougie dilator, which is actually a soft, rubber tube, and we'll actually place that at a slightly higher size than the rings. And by increasing the size of the balloon or the bougie dilator that stretches the rings, and because they're fibrotic will actually crack or tear the rings. And this can be somewhat disconcerting for someone who is not experienced in doing this because you will see a lot of blood. You'll actually see tears in the esophagus. And, once again, we do not like to see tears in the gastrointestinal tract because that could potentially lead to perforation, but if you don't tear the esophagus you're not helping the patient. So it's almost like a controlled complication, in a way, where you're trying to tear the esophagus, tear these rings, and this will relieve some of the obstruction because now the esophagus can open up wider and allow for a piece of steak or any other type of food bolus to traverse down into the stomach. Andrew Schorr: If you can find a way out of the inflammation, learn the cause, decrease the inflammation and you do this dilation, can healthy tissue grow? Dr. Pandolfino: Yes. Certainly as long as you control the inflammation or get rid of the inciting antigen that's causing this whole allergic inflammatory cascade, certainly you can make the esophagus look much better. Now, I always tell people when they have problems with the esophagus, they may never get down to normal or a completely normal esophagus, but we typically can make it much better so that you can enjoy a larger variety of foods and improve your quality of life. But I always tell people, no matter what, you always have to be careful when you eat, but we can certainly make it better. Andrew Schorr: And, Melissa, you have had some improvement, right? You're doing the swallowing of the medicine. You're observant of certain foods. You had allergy testing. Is it better? Is it getting better? Melissa: It is. It is, and I think like he had said that I realize that it will probably never be, quote/unquote, normal, but it's much more manageable now, and I feel a lot less fearful to go out to eat because it is more manageable now.

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Andrew Schorr: Doctor, what about the urgency of somebody getting this examined, whether it's GERD, it's just persistent or whether it's these symptoms like Melissa has had of what we'll call EE, or somebody is spasming or other swallowing problems, of really getting it worked up? And when you talk about scar tissue and things like that it would seem like earlier intervention is better than later. Dr. Pandolfino: Yes, certainly with swallowing problems earlier intervention is better. And the reason for that, for instance with eosinophilic esophagitis you don't want to wait to the point where people do have a food impaction because that can become dangerous. You can actually tear the esophagus and perforate the esophagus from a food impaction, especially if a lot of retching occurs. So if you can catch things early, treat it aggressively, you can maybe avert some of that really tight scarring that can occur. Even with esophageal motor problems, if you keep the obstruction at the end of the esophagus for long enough you will actually have dilation of the esophagus. And once the esophagus starts to dilate then you start to have problems not just from the lower esophageal sphincter obstruction but also because the esophagus now loses its ability to contract, and it almost becomes like a second stomach in the chest. And that will predispose people to significant amounts of regurgitation and possibly aspiration. So certainly you want to be aggressive with these symptoms. But unfortunately the patients are usually pretty resilient, so when they run into these problems they usually either consciously or subconsciously start to change their activities and their diet so that they don't have to come see the doctor. Andrew Schorr: Well, so that would be good, wouldn't it? And I wouldn't say avoiding an important medical visit, but if you can make lifestyle changes that are acceptable that's not a bad way to go, is it? Dr. Pandolfino: And that's certainly is quite all right, but we definitely want you to get evaluated first because if there is something else going on and something that's going to lead to problems in the future we'd much rather get you involved early because we could potentially prevent you from progressing to a very narrowed, small caliber esophagus which can be very difficult to treat. We can also maybe avert you from having a dilated esophagus with achalasia, which is a rare but common disorder in our practice because we're a referral center. But these patients come in and once they develop what we call mega esophagus they almost invariably have to get their esophagus out. And that is a very morbid operation which only should be done at centers of excellence.

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Andrew Schorr: Wow. Well, it's great that you can help people with that situation, but let's hope people don't develop to that point. I want to go back to the most common condition for a second, GERD. So you said really you define GERD where people have these persistent problems. It's not just you ate pizza last night and it didn't agree with you. So you come in and get evaluated. So there are a lot of over-the-counter medicines, and even, you know, little antacid pills and things like that. Is that okay? Or is it when people are just relying on that all the time they may need something more? Dr. Pandolfino: Yeah. I mean, the bottom line is everyone at some point in their life is going to have a little indigestion or some heartburn after a meal. It just happens. And as long as it's not too frequent, you know, we don't need to be too worried about it. I think if you're taking antacids once or twice a year, you know, when you know you're going to have a problem because of a meal or a party or something, that's not reflux disease. But when you're consistently taking antacid, three or four times a week, that's really when you have gastroesophageal reflux disease and you really need to be evaluated because you're probably going to need some kind of chronic acid suppression, one of the proton pump inhibitors, and you really should have an endoscopy at some point so that we can look at your anatomy and also look to see if there is Barrett's esophagus or esophagitis. Andrew Schorr: Now, there's, you know, huge counters at the pharmacy now of drugs that used to be prescription drugs that are over the counter. It's hard for us to know as consumers when those are effective enough. So is that another argument for being evaluated? Dr. Pandolfino: Well, certainly, you know, that's why I think on the over-the-counter meds it's always listed that if you're taking those medicines for more than 14 days you should see your physician. And I think that's not because the medicines are dangerous, it's because they want people who are requiring that medicine to see a doctor so that they can assess whether or not they need an upper endoscopy and whether or not they need to take this medicine chronically. So when someone starts taking this medicine, certainly the medicine treatment is actually a diagnostic test because if people respond to these acid suppressive agents, like the proton pump inhibitors which are very effective at treating GERD, it's almost like a diagnostic test for reflux disease. Because if I see someone in my office who comes in and tells me that their symptoms are almost completely gone with this particular medicine, outside of doing the upper endoscopy to make sure that there are no complications or anything else that I should be worried about,

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that pretty much cinches the diagnosis that this is reflux disease and that when they stop the medicine their symptoms get worse. I mean, I think that's a pretty good marker of whether or not they have reflux disease. Now, we could do some more definitive tests where we actually once again use a catheter-based technology. We can use something called pH impedance, or even something a little bit more fancier is putting a wireless capsule at the end of your esophagus, and we can actually measure the amount of acid or reflux exposure time in the esophagus. And we do know what the upper limits of normal are. So if you have a very abnormal pattern or at least exposure time to acid or gastric refluxate, then we know that you probably have reflux disease and that your symptoms are attributable to this. We can actually also look to see if there is a correlation between your symptom events and reflux. For instance, maybe someone is having some heartburn and we can actually see when they have a reflux event and whether or not that is associated with their symptom of heartburn or regurgitation. So we do have fancier tests that we can use, but we tend to reserve those for people when we're not exactly sure what's going on and most of the time when we're actually questioning whether reflux disease is actually part of the patient's clinical presentation. Andrew Schorr: Now, we were talking about Melissa's case where she had this inflammation in her esophagus. So someone with EE in her case could have reflux, correct? Dr. Pandolfino: Oh, yeah, certainly. And there is an overlap between reflux and the eosinophilic esophagitis. In fact, some people believe that maybe the gastroesophageal reflux disease can actually cause the mucosa, or the lining of the esophagus, to be a little bit weaker so that the antigens that cause this problem have an easier access so the allergic cells or the inflammatory cells. So certainly there is an overlap between gastroesophageal reflux disease and actually gastroesophageal reflux disease may actually make eosinophilic esophagitis worse. And really probably the best evidence of that is that sometimes you can actually get away with treating eosinophilic esophagitis with acid suppression alone. So there must be something to this, and I think we're still really trying to really work this out in terms of the pathophysiology of why this occurs. But certainly there is a small cohort of people, maybe, once again, about 10 to 15 percent, that will respond to just the acid suppression alone without really attacking the allergic reaction. Andrew Schorr: Well, that's where the wisdom of you and your esophageal center at Northwestern, you're multidisciplinary team come into play, and it's so important I think when someone has these ongoing symptoms to really see specialists in it who have experience because there are questions that have been answered, but as

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Dr. Pandolfino was just saying, there are questions they're still asking, trying to get clear answers, and that's where it helps to get to a place where they really have experience with this. We're going to take a short break. When we come back we're going to understand more about treatments and also where research is headed for some of these conditions as well. More of Patient Power right after this. Other Causes of Swallowing Problems Andrew Schorr: Welcome back to Patient Power as we continue our discussion about esophageal disorders and our discussion with Dr. John Pandolfino, gastroenterologist and the director of the esophageal center at Northwestern Memorial. Dr. Pandolfino, so we've discussed GERD a lot, which affects so many, and with Melissa Tierce, who is with us, we've been discussing eosinophilic esophagitis, and we'll discuss that more in a minute. We mentioned about these sorts of other swallowing problems, motor problems. So this is where, what? You just have some difficulty not caused by inflammation, where you just have difficulty swallowing? Tell us about that. Dr. Pandolfino: Yeah. So what actually happens is very interesting. The esophagus is a very complicated neurologic organ, even though it seems to be very simplistic, in that when you swallow you have these simultaneous nerves that are firing to both excite the esophagus and relax the esophagus at the same time. Now, the reason why we get food to move from top to bottom and the muscles start in the top and work their way and squeeze the food down from top to bottom is really the concentration of the type of nerves that we have in the esophagus. So at the end of the esophagus we have a lot more density of the nerves that actually relax the esophagus, whereas at the top of the esophagus there is a higher density of nerves that actually cause excitation or contraction. So that's really what happens. You simultaneously fire these nerves, and then you have excitation at the top and relaxation on the bottom, and then that progresses. As the relaxation goes away the contraction moves down the esophagus in a nice orderly fashion. So what happens in some people is that they actually lose the inhibitory or relaxation neurons, and that can be anything that presents like diffuse esophageal spasm or distal esophageal spasm, and these patients will have chest pain and really severe problems swallowing. And then the classic disorder, and probably the most well defined esophageal motor disorder is something called achalasia, which basically means a failure to relax. In that particular case what happens is these patients typically either have a spastic contraction in the esophageal body or absolutely no contractions in the esophageal body, and then at the lower esophageal sphincter the muscle never relaxes and opens, so food just continues to pool in the esophagus and in the chest. And this

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can dramatically affect patient's ability to maintain their weight, their ability to have a normal quality of life. They can get chest pain. They can aspirate. So it can cause a lot of particular problems. And we really use the high resolution manometry technique to define these particular disorders and also to tell us what to do about them, whether we're going to use Botox injections into the lower esophageal sphincter to help it relax. Are we going to put a balloon down there and stretch and tear the muscle so that the muscle now will be open and you won't have to worry about the fact that it's not relaxing? Or sometimes we will actually send them to our surgical colleagues who will do a definitive surgical procedure where they'll actually cut the muscle under a very controlled laparoscopic procedure, and we have some of the best about laparoscopic esophageal surgeons in the country here at Northwestern, so I feel very confident sending these patients for this particular procedure as long as the manometry lets me know that this is going to work. So it is a very complex problem. It's rare, but at Northwestern we probably see more achalasia than most places in the country, maybe even the world. Andrew Schorr: Wow. Well, it goes with what I was saying about should you have one of these conditions you want to get to where they're experienced about it. Now, I know there is no universal answer, Doctor, but generally whether it's with GERD, whether it's with achalasia, whether it's with eosinophilic esophagitis, can you help people to improve their quality of life? Dr. Pandolfino: Definitely. And once again, not to be somewhat redundant, it really goes back to the team and the important members of our team who are just as important as the surgeons and the gastroenterologists are, you know, our dietitians and our colleagues in cognitive behavioral therapy and psychology who do the hypnotherapy. One of the things that affects people is sometimes we're limited in our ability to help people improve their esophageal physiology. There are very limited medicines to improve way the esophagus contracts. In addition, there are very little medications available that will actually help us relax the lower esophageal sphincter. Certainly Botox can poison the muscles, similar to what it does in the skin or at least in the forehead as people use it for cosmetic procedures. It can actually make the muscles weak down at the lower end of the esophagus, but we don't have great medicines to treat patients all the time, so what we're left with is treating the symptoms. And by modulating their diet with the help of an excellent dietitian and then also by helping the patients down regulate the sensation or the fear of having something caught dramatically improves their quality of life. And I think to have a comprehensive esophageal center you certainly have to have good

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gastroenterologists and surgeons, but you also have to have the other components because otherwise you may treat the mechanics of the problem but you're not treating the symptoms and the patient as well as you can. So I know I'm sounding redundant here, but I really want to emphasize that you have to have these other components. Because even Melissa, we may never be able to get Melissa's esophagus to work completely well, but Melissa told you that the things she worried about the most was the anxiety, you know, the fear about what's going to happen when this occurs and she's visiting with friends and so forth. And that's really what we focus on. We focus on improving your quality of life. Not just getting rid of the disease or the obstruction, but really helping you enjoy your life, enjoy your social activities; because once again, our lives revolve around food, and more and more so as we get older. That's kind of our number one social interaction, and if you have people who are worried about that, that to me is a dramatic impairment in their quality of life, and that's really where I think we're most helpful. Diet Andrew Schorr: Let's talk about diet for a minute. So in some cases there could be some bad guy in the diet that we're trying to figure out. You mentioned, Melissa, that beef may be some factor for you, and I know you had allergy testing, skin testing, and there was some reaction to beef. Have you cut beef out of your diet? Melissa: Oh, yes. Totally. Andrew Schorr: Okay. So how do you come to understand that, Doctor? I know sometimes there's even something called an elimination diet. Maybe you could describe that for a minute. Dr. Pandolfino: Well, I will say that, once again, I am a gastroenterologist, I think gastroenterologists probably provide some of the worst dietary advice to patients sometimes because we have a tendency to tell people what they can't eat, and I think the more important thing to do is have them see a dietitian; because dieticians take a completely different tact when they deal with patients. And, yes, they certainly will tell patients what they can't eat, but they also tell them what they can eat. And they also help them develop menus for like an entire week so that the patient can look at this as not an overwhelming problem. When you look at what we tell people to avoid if they have gastroesophageal reflux disease, for instance, they're almost relegated to only eating chicken and rice the rest of your life, which may be a problem with eosinophilic esophagitis because

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they'll get things caught. But the bottom line is that sometimes these dietary restrictions impair or reduce the quality of life more than the disease. So I think it's extremely important to have a good dietitian give advice. Now, for the specific disorders certainly if someone has gastroesophageal reflux disease there might be some triggers that reduce the pressure in the lower esophageal sphincter and allow reflux to occur. Now, the only person who really knows whether or not that's important, though, is the patient, because if a patient tells me that they only have a problem when they have tomato sauce, I'm not going to tell them that they have to avoid chocolate the rest of their life if they've never had a problem with chocolate. It would seem illogical for me to do that unless I thought that it was creating a scenario where they were developing severe esophagitis. So I try to really focus the dietary elimination in terms of reflux disease. Now, eosinophilic esophagitis is a little bit different in that we know that there are certain triggers. There are six specific food types that trigger eosinophilic esophagitis, and we know that one of the big ones are soy, nuts, certainly eggs and dairy and some wheat products. So those are things that we tend to want to eliminate. And when patients hear that they automatically go, oh, my god, well, what am I supposed to eat? Well, once again, that's why we send you to a well-equipped dietitian who provides with you menus and gives you some latitude to enjoy food. Meanwhile you're avoiding the antigens that are causing the eosinophilic esophagitis. And we always let the patient know that even though we're avoiding these big groups eventually we're going to try to start to introduce those back and figure out which one is causing the problems so we can liberalize this elimination and not make this the common theme of your day. What do I have to avoid? I have to stay away from this. Now, in people who have dysphasia from esophageal motor disorders, you know, sometimes those can be very difficult to treat, but in that respect we really want our dietitian to focus on foods that are easy or at least will move easy through the esophagus. So we tend to like softer foods. If you're going to eat meat we like ground products because the esophagus can deal with those a little bit better. They'll fall and move through esophageal gastric junction or the lower esophageal sphincter much easier than big pieces of steak and chicken. And also another thing that our dieticians always focus on and sometimes we might neglect is, you know, teeth. If your teeth are not working or you have issues with your teeth or whether you have dentures or you a have a toothache or you're having dental problems, if you're not chewing your food well enough then you're not going to be able to digest it well enough in the stomach, but also it's going to be too large to traverse through the esophagus. So I think a lot of times our

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dieticians are also helping people--and also our hypnotherapists are also helping people learn how to eat appropriately so that they don't develop these symptoms of dysphasia. Andrew Schorr: And, Melissa, you mentioned that. Somebody must have told you that earlier because you said you worked on smaller bites. Melissa: I kind of figured it out for myself as far as taking real small bites, chewing a whole bunch and drinking a whole lot while I was eating. Something else, though, that we haven't talked about that I know that I tried and my son had to do was the medical formulas. Dr. Pandolfino: Mm-hmm. Melissa: And I will say that now as an adult I chose not to do this long term because of the way it tasted-- Dr. Pandolfino: Yes. Melissa: --but when I was having severe reflux heartburn-type symptoms I know in the evening if I did not eat a meal but drank formula instead it definitely helped control symptoms. But again, as Dr. Pandolfino was saying, it doesn't really help with your quality of life to be, you know, drinking a medical formula as an adult. Dr. Pandolfino: Yeah. Those medical formulas taste horrible, and I think that's really the biggest problems with adults to have them have that. Some of them actually opt to get a tube placed because they can't tolerate the taste. But certainly, once again, it highlights the fact that this is related to foods--or eosinophilic esophagitis is related to foods because people do extremely well on these elemental food supplements that really get rid of a lot of these antigens. But, as I mentioned, I've tried these products and they're really not very palatable. So it might just exchange one impairment in your quality of life to another. And one of the things actually Melissa just reminded me of that I didn't really talk about too outside of diet, sometimes some life, very mild lifestyle modifications can help especially with reflux disease. And one of those is avoiding big meals before you go to sleep and possibly raising the head of the bed six inches so that gravity will prevent the acid from sitting in your esophagus when you're sleeping. Even some weight loss. If you lose 10 or 15 pounds it can substantially improve your reflux. And that's really because that 10 or 15 pounds usually is associated with

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some increase in your intragastric or intraabdominal pressure pushing up the reflux into your chest. And certainly if you can lose about 10 or 15 pounds that would certainly improve your reflux symptoms and obviously also improve a lot of other things, so it should always be advocated. Research Andrew Schorr: I want to ask you about research for a minute. So, for instance, I know there's a condition, fortunately not common, hypereosinophilia, and I've met some people like that, and their life is difficult. I know there's been a lot of research in that area, and maybe could help Melissa too where these, you know, your own immune system has been causing inflammation. Where are we with that with understanding that and maybe the development of medicines that would help? Dr. Pandolfino: Well, certainly we know that this eosinophilic or hypereosinophilic syndrome are associated with almost kind of an abnormality in the cytokines, you know, that are just kind of off kilt in a way. You know, they're just not in balance. So there is definitely a lot of interest, especially in eosinophilic esophagitis, in looking at some of these what we call ILs or interleukins. And we know that certain interleukins, like interleukin 5 and interleukin 13, which are these cytokines that these cells make that recruit these inflammatory cells and maybe allow these inflammatory cells to become stronger and multiply and become more prevalent in specific types of tissue, and if we can target those and maybe develop antibodies against those then we could possibly reduce the inflammatory component and then of course the disease. So there's a lot of interest in developing these particular medicines and what we call immunomodulators because they affect the immune system because that's really where the interleukins act, but certainly there are some other treatments on the horizon. And as such I think there's also a lot of interest in delivering the medicines to the esophagus a little bit better. I mean, sometimes swallowing the Flovent inhalers can be difficult for patients, so certainly we would, you know, like to have better delivery mechanisms. And we're also getting a little bit better on the mechanical side, you know, developing maybe better dilation techniques. And then also our ability to follow disease. I think one of the things that we would love to do is we would love to replace endoscopy with biopsies using maybe a noninvasive test for patients, because certainly patients don't want to take a day off from work or come in for an upper endoscopy every three to six months when we're trying to figure out what particular type of treatment or management will work. So there's a lot of interest. There are a lot of people suffering with esophageal disorders. Eating is an extremely important part of life, not just in terms of getting

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yourself nutrition but, you know, in feeding the spirit and your quality of life. So there are a lot of people working on this and really trying to help people who have swallowing problems or esophageal problems in general. Andrew Schorr: And I want people to know they're not alone. Melissa, I know you're active in a community of families affected by eosinophilic esophagitis and gastroenteritis, and that's the American Partnership for Eosinophilic Disorders, or APFED, and they have a website, apfed.org. And so you know you're not alone because you were just sort of living with it, maybe not even talking to people about it for so many years, and now your son was diagnosed with it. That makes me think of one thing, Doctor. People will wonder, and I know when I've done programs on Barrett's esophagus it came up too. Do we know in maybe some percentage of cases there is a familial connection? Dr. Pandolfino: Oh, certainly there is. We've seen a lot of work done especially by the Cincinnati group in looking at some of these genes that affect something called eotaxin 3. And we certainly do know that there is a genetic predisposition to this particular disease. And we do see it a little bit more common in families. There's actually a male predominance of the disease also, so there's probably something that sets males apart from females, but as you obviously see it does affect females. It's just at a higher frequency it will affect males. And I do think that it has also to do with the fact that we're becoming a more allergic society and probably has to do with, you know, just the cleanliness. We're a lot cleaner. We don't get exposed to a lot of things, growing up as our, you know, forefathers did or people a hundred years ago. So we don't develop these tolerances to specific things, and we might develop these things later in life. So, you know, there certainly is a familial component to this. There are genes that are being isolated and identified that are being associated with this particular disease, and we're learning more and more. And thanks to people helping out I think we're going to make major strides and exponential strides in improving the quality of life in people with eosinophilic esophagitis and all the other esophageal disorders. Advice to Others Andrew Schorr: Melissa, you suffered for many years, and your young son has these problems, and, you know, like any parent, you don't want your child to suffer and you investigate it and get to the bottom of it, and there you are living with it. So for adults who have any of these problems, and it's going on and it's affecting your life, what would you say to them?

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Melissa: Number one, I would say research. But, you know, find support and most definitely go see a good quality gastroenterologist and preferably one like these from Northwestern that actually specialize in esophageal diseases. Andrew Schorr: I could not agree more. And this is no disrespect to any local doctor you might see anywhere, and certainly your primary care doctor can always help you navigate all this. But, first of all, not every gastroenterologist will specialize in esophageal problems, and so those are questions to ask. But I know your group there, Doctor, not only does, but you have a multidisciplinary group. And as I listen to you with dietitians and even hypnotherapy and giving people confidence that they can eat, you're a firm believer that all that and coming together can provide better care. Dr. Pandolfino: Certainly, I think once again, you know, you can't just treat the mechanics, you have to treat the patient and their quality of life and improve the quality of life, and you can't do that with just surgery and medicines alone. You need everything at your disposal. Andrew Schorr: Okay. Well, congratulations to you and thanks to you for all the work you and your colleagues do at Northwestern Memorial in having an esophageal center that focuses on this that can help so many people. And you brought a lot of knowledge worldwide today in our program. Dr. John Pandolfino, the director of the esophageal center at Northwestern Memorial, thanks to you, Doctor. Dr. Pandolfino: Well, thank you, and it's always a pleasure to discuss this topic. Andrew Schorr: Sure and, Melissa Tierce, the best to you. You've gotten a lot of good information for you and maybe for Tristan too today, and we hope this leads you and others who have been dealing with this to better health. Melissa: Oh, most definitely. Thank you so much for your time. Andrew Schorr: Well, pleasure for me to bring you this program. Thanks to Northwestern Memorial, our sponsor. I'm Andrew Schorr. Remember, knowledge can be the best medicine of all. For more information or to schedule an appointment with a Northwestern Memorial physician, please contact our Physician Referral Service at 1-877-926-4664 or visit us online at www.nmh.org.

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Please remember the opinions expressed on Patient Power are not necessarily the views of Northwestern Memorial Hospital, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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The Esophageal Center: Using a Multidisciplinary Approach ...cdn.patientpower.info/p2docs/transcripts/NMH0110910.pdf · condition you think of, of course, is GERD, where there's acid