In part 1 of this episode, Dr. Nathan Fox speaks with Dr. Asher Kornbuth, a clinical professor of medicine in gastroenterology at Mount Sinai about the two types of irritable bowel disease (IBD), Crohn’s Disease and Ulcerative Colitis. They cover, who is most commonly diagnosed, the differences between the two types of IBD, treatment options, and more.
“Crohn’s and Ulcerative Colitis, Part One: Overview” – with Dr. Asher Kornbluth
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Dr. Fox: Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OBGYN and maternal fetal medicine specialist practicing in New York City. At “Healthful Woman,” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness.
All right, Dr. Asher Kornbluth, welcome. You are a clinical professor of medicine in gastroenterology at Mount Sinai. You practice at New York Gastroenterology Associates in New York City. You were the teacher, the instructor, the head of my GI and liver disease course at Mount Sinai back a hundred years ago when I was a med student. You’re a world-famous doctor and teacher, and we’ve known each other for a long time. Thank you for coming in. Thank you for coming on the podcast. I appreciate it.
Dr. Kornbluth: Thanks very much, Natie, for having me. We go back a long way, much longer than med school, and your late father-in-law was a very, very dear mentor of mine, Saul Egerson [SP]. Mention his name, and everyone just smiles and remembers him so fondly. So, aside from that, thanks very much for having me.
Dr. Fox: Yeah, you’re correct. I knew you before I got into med school, and on the reverse, my father-in-law always said, “Asher’s awesome. You should know him.” And he loved you as a teacher and as a doctor, and he was proud of you. He felt like he had something to do with your training.
Dr. Kornbluth: He did.
Dr. Fox: He did have a lot of pride.
Dr. Kornbluth: Thank you.
Dr. Fox: So, good stuff. So, you know, for our listeners, I gave, like, the brief, you know, the bio, whatever, but who’s Asher Kornbluth? Like, where are you from? How’d you get into medicine, GI, and where you are now?
Dr. Kornbluth: Well, I don’t wanna tell you way back why I got into medicine, but I’ll tell you why I picked gastroenterology and specifically what I do, which is Crohn’s disease and ulcerative colitis. And my very dear Crohn’s and colitis mentor, the person who really put Mount Sinai on the map, Henry Janowitz, started the division in 1959. Well before Mount Sinai was even a medical school, we were already very well known for gastroenterology. I’m not that old. I wasn’t around in…well, actually, I was barely around in ’59. He said, “If you wanna grow old in medicine, find the chronic disease of young people and grow old with them.” And to me, that was, you know, exactly what I wanted to do. I wanted to take care of patients who unfortunately, can get pretty sick and have long-term relationships with them. I wasn’t interested in taking patients for a one-and-done visit and not seeing them. It’s extraordinarily gratifying to see patients over many years. And I don’t even remember when they were real sick, but they remind me, you know, the travails they went through and, you know, what we could do for them is, in their life, very important.
So, it really has fulfilled all my sort of, you know, literally dreams and aspirations about what I wanna do in medicine, which is take care of sick people, get them well, God willing, have ’em stay that way, and have long, long-term relationships with them.
Dr. Fox: Yeah. I mean, you must have patients who you’ve been taking care of literally since the first day in practice.
Dr. Kornbluth: Yeah. And I would like to tell you that I went to practice three years ago, but it’s not…because that means I would’ve graduated medical school at age, well, late 50s. Anyway, yeah, I’ve been in practice since 1990s. That literally puts me at 32 years. And unfortunately, these are lifelong diseases, Crohn’s and colitis. So, I have patients who I met in July of 1990 who are shockingly have not chosen to see other doctors and they’re still with me.
Dr. Fox: You still take their plan? So…
Dr. Kornbluth: I don’t know about that, but I still listen to them. I still listen to them. My wife used to say, “Asher, you know, this close friend of ours went to see you, and you never told me about it.” I say, “First of all, because I would never violate their confidentiality.” And she used to say, “Well, they thought you just did nothing but sit and listen to them. Why can’t I be a patient of yours? I mean, where do you get that from?” I say, “Sometimes, that’s what they need, and that’s the most important thing we do, I think.”
Dr. Fox: No, it’s really true. I mean, when I went to OBGYN, OBGYN is very much like that. You can meet someone when they’re a teen, a young adult, and, you know, take care of them. Gynecology, pregnancies, menopause, I sort of moved out of that into the pregnancy world, so I do get sort of long-term relationships. Obviously, like, pregnancy itself is, let’s say a year, but over multiple pregnancies, I’ll get people for 10-plus years. But it really is amazing. I mean, there’s a lot of different ways to practice medicine, obviously, and they’re all important and helpful, but for people, you know, you’re a schmoozer, I’m schmoozer, people like to talk, people like relationships, people like meeting people. I used to say that about my father-in-law, I said, “His patients became friends, and his friends became patients.” Like, everything started to gel together, and you couldn’t tell whether this person was a patient, a friend, or if they’re both, which one were they first? Because you just, you know people for so long, you really feel close to them. It’s tremendous.
Dr. Kornbluth: With that, I’ll take a slight exception. I mean, many of my patients have become friends, but I frankly don’t allow my friends or family become my patients. I have two great partners, I’ve been with for many years now. I’m part of a much larger group, New York Gastro Associates. I’ve been with Jim George and Pete Legnani, three dysfunctional brothers, a Jew, a Greek, and Italian, we get along great, handshake for 30 years and then we all merged together in New York Gastro Associates. I always have a place to send my family and friends.
Actually, this is a bit of an aside. When I lived in Englewood, not far from you, there was somebody who had a dairy deli store, and I said, “Where do you live?” And he lives about 45 minutes away. I say, “Why do you do that?” He says, “I never want to be going to synagogue and have people come over to me and say, ‘You know what? I didn’t like your kugel this week. I didn’t like, you know, your chunk.’ I don’t want that.” So, when I was going home on weekends, I didn’t want patients telling me about their bowel movements in synagogue when those rare times I went to synagogue.
Dr. Fox: Okay, fair. So, let’s talk about what you mentioned, you specialize or subspecialize in Crohn’s and colitis, sometimes collectively called inflammatory bowel disease, IBD, sometimes just called colitis. A lot of names for them. How would you explain just generally, like, what are these things? What are we talking about here?
Dr. Kornbluth: Okay, so they are called Crohn’s disease and ulcerative colitis. Basically, comprise inflammatory bowel disease, and you’ll hear the abbreviation, or patient has IBD. But by the time the patient is diagnosed with an inflammatory bowel disease, they’re far more specific. They’ll tell you whether they have Crohn’s disease or they have ulcerative colitis. It’s very important when you hear those initials, IBD, you recognize that it’s inflammatory bowel disease, far less common than the far more common irritable bowel syndrome, which is IBS, extraordinarily more common. Also though, in the same demographic, young folks, teens, 20s, 30s, that is characterized not by inflammation. So, we’re not using all of our very potent immunosuppressive drugs and anti-inflammatory drugs. People with IBS can suffer mightily, but it’s not inflammatory bowel disease.
Dr. Fox: Right. That’s a very unfortunate confluence of acronyms I’ve always felt. They really gotta change it. Have one start with, like, a Q or something.
Dr. Kornbluth: A silent P, PIBD. The PIBS. So, Crohn’s disease, they are cousins or maybe even closer relatives on that. Crohn’s disease can cause inflammation in either the small intestine or large intestine, whereas ulcerative colitis is limited to the colon. Some patients are told they have Crohn’s colitis and they get a little confused, they think they have two diseases. When we use that expression, it means that they have Crohn’s-type inflammation in the large intestine. Colon is the same word for large intestine, that’s why we call it colonoscopy. So, you have one disease. If it’s Crohn’s disease, it is more commonly in the small intestine, but often small intestine, in the small intestine, the region called the ileum, which is right next to the large intestine or colon. So, patients can have ileitis of the Crohn’s variety or they could have Crohn’s colitis kind of inflammation or both, whereby we call it ileal colitis.
Ulcerative colitis, a closely related disease is always limited to the colon, the large intestine, and if it’s in the small intestine, it ain’t ulcerative colitis, then you gonna have to call it Crohn’s disease or something else. Ulcerative colitis, more characteristically, very common, bloody stool. If there’s never been blood, there’s just been diarrhea, it’s probably not ulcerative colitis. Although some episodes might not have bleeding, but if someone tells you they’ve never seen blood and they’ve had diarrhea for many years, it could be Crohn’s disease or it could be something else.
Crohn’s disease, besides diarrhea, which is sometimes not present at all, sometimes it is purely abdominal pain or discomfort, most typically in the right lower part of their abdomen, which is where the ileum lives, and diarrhea, maybe some blood, weight loss is not uncommon, but pain tends to sometimes be pretty significant because food is trying to get through what essentially might be an inflamed and even scarred and narrowed area. And that’s not typically a hallmark of ulcerative colitis.
Dr. Fox: So, you mentioned that it could be in different areas, let’s say, so in Crohn’s. Does it matter so much what area it’s in, in terms of anything, or is it just, like, in one area it’s worse, another area it’s better, or in one area you’ll have pain in another area, you’ll have diarrhea? Like, does it make a big difference to you exactly where it might be located?
Dr. Kornbluth: Yeah. So, ulcerative colitis is pretty uniform. It’s gonna be bloody diarrhea or maybe just diarrhea. Crohn’s disease, it really is a very wide spectrum. Some patients, the problem in their ileum, again the small intestine, which is more narrow than the large intestine or colon, is it gets so narrow that every time food tries to get through there, it encounters some narrowing and is trying to squeeze through a narrow area, and that leads to pain. If that narrowing gets very severe, usually over years with scarring, then they can get outright obstruction where things get stuck. And think of the intestine as one long balloon, and if you squeeze a balloon at the bottom, the intestine above it, the balloon above it starts to swell and it becomes perhaps exceptionally painful.
So, ulcerative colitis is just the bloody diarrhea…not just, people can be awfully miserable with it. But pain is not so much a hallmark as it might be in Crohn’s disease. Some people with Crohn’s disease don’t have any pain, they just have lots of inflammation, and that, too, results in diarrhea, sometimes bloody.
Dr. Fox: And so, when someone is being evaluated, right, and you’re trying to determine exactly what they have, I would imagine just from talking to them, you have most of…you know, sort of most of the time you’re gonna get it right. So, what are the things you might do afterwards to be certain what they have?
Dr. Kornbluth: Right. So, that’s a great question because the point I make to patients, they say, “Well, I wasn’t sure if I had Crohn’s disease or ulcerative colitis.” It turns out Crohn’s disease and ulcerative colitis, if you’ve thought of the possibility of the diagnosis, it’s hard to miss because with two tests, basically, you can evaluate the entire gastrointestinal tract, GI, gastrointestinal tract, literally from mouth to anus as we say, which is not terribly appetizing. But basically, think of the GI tract, starting in your mouth goes down the… It’s one long continuous tube or tunnel. Food goes in the mouth, down the esophagus, the food pipe, then into the stomach, which is actually just a small sack in the left upper part of your abdomen. Most of your abdomen is possessing the small intestine, called small because it’s thin, thinner than the large intestine. So, the small intestine might even be 10 or 12-feet long, all curled up inside your abdomen.
It ends in a portion of the small intestine that we call the ileum. And the ileum joins the large intestine, also known as colon, again, in the right lower part of your abdomen. So, you could see the entire mouth, esophagus, stomach, and small intestine. With a single CAT scan and 15 minutes, you’ve evaluated all of that. And Crohn’s almost always, if it’s symptomatic enough that you’re going to the doctor, you’ll see it on the CAT scan if it’s in those regions. CAT scan ain’t great for the large intestine because by the time that contrast has had to go through 15 feet of intestine, it’s all diluted. The colon though, we see exquisitely well, as you can guess, with a colonoscopy. We start at the other end, at the anus, and put the scope in from the anus up to the rectum throughout the entire large intestine, which is about…and that, too, varies in length, 3 or 4 feet. Now, we put the scope into the area where it joins the small intestines.
So, with a CAT scan and a colonoscopy, boom, you’ve seen the entire GI tract. So, it’s not subtle. By the time you have symptoms severe enough to seek gastroenterologist, there’s going to be something visible on those two simple imaging tests. So, it’s important for patients with IBS that they’ve already gone through those two tests, which you could do literally in a day or two. They don’t have Crohn’s or colitis. If you think of the diagnosis, it’s not a hard diagnosis to make.
Dr. Fox: Now, who is it that gets this? Like, who’s at risk for getting? Is it in certain ages, certain populations, family history, other medical conditions? Are people set up for this?
Dr. Kornbluth: Yeah. So, that’s a great question. And basically, anybody could get it, but it is far more frequent in people in their teens, 20s, and 30s, and unfortunately, we even have younger children with it, which is really troubling because poor kids could get really sick, sometimes just as sick as any patient will ever see. Fortunate, we have pediatric gastroenterologists who spend their life struggling with that, we have at Mount Sinai, and I’ll brag about it. We have one of the finest pediatric gastroenterology divisions anywhere, and little side bar, Crohn of Crohn’s disease was at Mount Sinai. He wasn’t named after the disease, the disease was named after him. He didn’t have it. I know that on good record. But unfortunately…
Dr. Fox: And Crohn was also fortunate enough that his name had a C, which is earlier in the alphabet than the other guys who published with him, right? Was, like, Oppenheimer?
Dr. Kornbluth: You’re forcing me to do it. I’ll give you the story very quickly. So, Dr. Ginsburg and Oppenheimer, Ginsburg was a surgeon, Oppenheimer, of all things, was a urologist who was doing research. They had 11 patients with inflammation in the ileum, and called it Ileitis. Burrill Crohn, Burrill was his first name, came along and had two patients. So now they had 13 patients. They go to the surgeon, who’s senior to all of them, and said, “Well, Dr. Berg…” A.A. Berg, I’m not sure what the initial stand for. But they said to Dr. Berg, very respectfully, “Dr. Berg, we’d like to put you on the paper in the presentation because you operate on all these patients.” And he said, “You know what?” And this frankly, these days is extraordinarily rare. He said, “I don’t want my name on the paper because I had no intellectual contribution to make, so I don’t really deserve to be on the paper.” So, they said to Dr. Berg, “Well, how should we put the authors in order?” He said, “Well, just do it alphabetically.” So it became Crohn, Ginsburg, and Oppenheimer.
In 1932, Burrill Crohn got up in New Orleans at the meeting of the American Medical Association and he presented their data. A few months later, he published it in the “Journal of the American Medical Association.” And I asked Dr. Janowitz, who took over for Dr. Crohn, “Did he ever call it Crohn’s disease?” He says, “No, that the British started calling it Crohn’s disease in the late 1930s.” He said, “No. Crohn never called it Crohn’s disease, but on the other hand, he never corrected anybody who did.”
Dr. Fox: Fair. Okay.
Dr. Kornbluth: To be fair, for about 60 years, Ginsburg and Oppenheimer barely ever talked to Crohn until the day they founded the Crohn’s & Colitis Foundation. Then others, the National Foundation for Ileitis & Colitis. And there’s a famous picture of them, the three of them together. And that didn’t happen very often. So, it’s Crohn’s disease, but actually it could’ve been known as Ginsburg or Oppenheimer’s disease. It’s often known as ileitis because that’s the area that’s most often inflamed. And a piece of history, and if somebody out there is in their 80s, you might have known that you had Eisenhower’s disease. And some patients never were told they have Crohn’s. President Eisenhower, and I won’t… Unless you really want to chew up time, tell you the Eisenhower-Crohn’s story.
Eisenhower-Crohn’s had a bowel obstruction, intestinal obstruction during his presidency, had already… Oh, I am telling you the story. Already had two heart attacks. So, people were very worried about him, had a bowel obstruction acutely, had no known history of Crohn’s disease, was rushed to the hospital, I think it was at the Naval Hospital in Bethesda. They operated on him. The market crashed that day. I’ll make up some numbers. It was about 300, and it went to 100. The country went crazy. They went to Burrill Crohn’s office, the press, the media, and he said, “Don’t worry, they’re gonna operate, he’s gonna be fine,” and the market shot back up 200 points. So, that’s Eisenhower disease. He’s the president we know.
Dr. Fox: And they didn’t have an opportunity to tweet it out back then?
Dr. Kornbluth: No, they didn’t tweet it out. And in fact, it’s not a disease of 65 or 70-year-old gentile men who are presidential office. It is, though, to get way back to your question, a disease far more commonly in Ashkenazi Jews, so Jews who originate in Eastern and Western Europe, again, teens, 20s and 30s. Having said that, we see all races, all ethnic groups, and as we have become more aware of this disease, we’re seeing in all parts of the world.
Dr. Fox: Does it run in families?
Dr. Kornbluth: Yes. So, that’s a great question, too. Especially if you are in very Ashkenazi families. In other words, Ashkenazi families that have stayed intertwined very closely. For instance, Hasidic Jews, and we see very many of them in New York, they tend to marry within their own groups. So, their genetic pool has basically gotten very limited because they’ve originated in the same city 300 years ago in Eastern Europe, and they stay basically very close knit together, marry people within their group, so that genetic pool’s not very large and diluted. So, there is a genetic component. Now, people always say, well, if I have Crohn’s disease, and I appreciate the opportunity, Natie, to talk to your audience who are presumably mostly women of childbearing age, the big question is, is what’s the likelihood that if I have Crohn’s or my husband, that my child will have Crohn’s? And the number we quote is about 6%, if only one parent has Crohn’s. If two parents have Crohn’s, the number might be as high as 40%.
Having said that, most patients with Crohn’s disease, especially if they’re not Ashkenazi Jews, but even in the Ashkenazi Jews, most of them don’t have a family history at all of Crohn’s and colitis. So, why do I say it’s in part a genetic disease? There have already been discovered 180, what we call susceptibility genes, to either Crohn’s disease or ulcerative colitis, and a lot of them overlap. So, although no one in your family may ever have had Crohn’s disease or ulcerative colitis, some of them are carrying the genes, and the unfortunate patient who got the disease, inherited some constellation of those genes, some combination that predisposed them to the disease. So, yes, there is a genetic component.
Dr. Fox: Is there an environmental component? Like, do you see it more in certain climates or certain parts of the world or potentially with certain diets or something like that?
Dr. Kornbluth: Yeah, that’s a great question because if you look at…
Dr. Fox: I ask great questions, Asher. We don’t fool around here. This is a serious podcast. You know, this isn’t fluff. Really, it’s like “60 Minutes.”
Dr. Kornbluth: I thought it’s gonna be like Howard Stern.
Dr. Fox: No, no, no. You’re gonna sweat a little bit. I love it. All right.
Dr. Kornbluth: Yes, because you turned [inaudible 00:19:42] a couple of shackles here.
Dr. Fox: We have you chained to a chair with a little light hanging from a ceiling. We’re interrogating you. It’s all good.
Dr. Kornbluth: You guys are a tough crowd. What was the question?
Dr. Fox: I was asking, is there any environmental, diet, things like that?
Dr. Kornbluth: [crosstalk 00:19:55] Because if you have close-knit groups, they often share typical diets. A lot of the Ashkenazi Jews here in, say, the New York area grew up on plain old Eastern European cooking. So, it’s hard to separate that out. And diet probably plays a role. Having said that, and there are a lot of people who say, well, this, and there’s some element to this, is, you know, a disease of the gut has to be affected by what you’re putting in the gut. Having said that, we haven’t really found specific foods that inevitably will trigger an attack or exacerbate an attack, or foods that you could eliminate that make it less likely. One of the diets that is extraordinarily common and popular here in the New York area is the specific carbohydrate diet, which is a very restrictive diet, also known as the Gottschall diet, after Elaine Gottschall who first described it. It’s basically, and I might misquote a little bit, but really “restrictive.”
And when my patients are really sick and losing weight anyway, I try and discourage them from going on anything that’s very restrictive. It’s gluten free, lactose free, sucrose free, which is any table sugar, any added sugar, perhaps fructose free, I’m not sure. It’s very restrictive. And I tell patients, if you want to do that, you have to be very mindful that you’re getting adequate calories, and it is to be used in addition to medication and not instead of medication. So, yes, diet plays a role, but I can’t pinpoint something that is the likely trigger.
Dr. Fox: I assume we don’t know definitively, but what would be your best guess? Why is it that someone would get Crohn’s syn? Like, what happens? You know, is it just sort of, like, bad luck?
Dr. Kornbluth: Yeah.
Dr. Fox: Or do you think that there’s some inciting event or…? You know, because, I mean, it’s always one of the mysteries in medicine, like, you know, two people, same family, same neighborhood, whatever it is, and one of them is, like, horribly ill with Crohn’s and one of ’em is perfectly fine. And it could just be luck obviously, but what do you think?
Dr. Kornbluth: Yeah. So the short answer is, I unfortunately have to say this too many times, is the patient said, “Why did I get it? I got nobody in my family.” And I could give ’em, “You’re in a ethnic group, demographic group that is more likely to have it.” That’s not very satisfying, as much as they wanna blame their parents for something. More often than not, by far, the answer is, it’s just bad luck. I’m sorry, but I wish I had an explanation. And for any given exacerbation disease flare-up when you’ve been doing well for a long time, we don’t have a finger to point to that. What are the possible triggers? Which is in a minority of patients. If you have known Crohn’s or colitis, the NSAID family of medications can exacerbate it. That’s Motrin, Advil, Nuprin, Aleve, and Naproxen, etc.
Any kind of infection you get doesn’t cause Crohn’s and colitis, but can, if you get a bad “food poisoning,” that then doesn’t get better, and lo and behold you have Crohn’s disease or also colitis. We don’t think the infection caused the disease, but probably unmasked somebody who’s gonna get it anyway. Interestingly enough, smoking makes Crohn’s worse, as it does anything, but very oddly, and we’re not sure why this happens, cigarette smoking makes ulcerative colitis better in many people, so much so that if a patient tells me, “I got new abdominal pain. I got diarrhea, and just by chance, I happened to stop smoking six weeks or six months ago,” it’s almost always ulcerative colitis. So much so that if you got a patient with features of both Crohn’s disease and ulcerative colitis, if they’re a active smoker, it’s always Crohn’s disease. And it’s a very typical history that someone who stopped smoking will develop ulcerative colitis in some point of time. That’s never to say I encourage patients to start smoking. [crosstalk 00:23:37]
Dr. Fox: Not the treatment of choice for ulcerative colitis?
Dr. Kornbluth: No. People have done nicotine patches as a treatment, nicotine enemas even, and it might have a short-term benefit, but it loses its benefit long term. Some docs I know even tell a patient, “The thing that you tell me is working best is when they smoke two or three cigarettes a day.” And they sort of sign off on it. To me, that’s a very slippery slope, and I never sign off on that because this is somebody perhaps that worked very hard to quit. Now they’re down to no smoking, I’m telling ’em start two or three cigarettes a day, and, you know, next thing you know, they’re a pack a day and I’ve really done them some harm. So I don’t encourage that.
Dr. Fox: And then, if someone out there, you know, has abdominal pain, they get diarrhea on and off, or this or that, you said it could be something like IBS, which is again lifelong and could be very distressing, could be very painful, this set but is not Crohn’s or colitis, or could possibly be that or something else. How would they know if they need to see a doctor, right, and how would they know if they really got the right evaluation? I presume if they see a gastroenterologist, this is something you guys see all the time, presumably, but, you know, you see your general doctor or a teenager, you see a pediatrician, they see… How would someone know potentially whether they need to take it to the next step?
Dr. Kornbluth: Yeah. So just as a little aside, when you say kids, I’m not a pediatric gastroenterologist, but I tell my patients, young patients, you know, because they’ll ask me, you know, “My kid has abdominal pain. My kid’s constipated now.” I said to them almost always, I say, “You know what? If your 5-year-old has abdominal pain or the constipation, it’s abdominal pain or constipation, they don’t have Crohn’s disease.” They’re gonna have some more stuff. Adults, patients with irritable bowel could have a lot of abdominal pain. Usually, it’s after meals or with stress. Rarely, if ever will wake them up at night will not be associated with any blood test inflammatory markers. And here I’m not talking about exotic blood tests, a simple blood count, simple blood electrolytes, and a measurement called the albumin, which is a measure of nutrition. You do those very simple basic screening tests, if those are normal, even if you’re having significant pain, and frequent with stools, it might not ever be Crohn’s disease.
And statistically speaking, if it’s pain, gas, bloating after meals, your blood tests are normal, you don’t have blood in the stool, you’re not waking up in the middle of the night, and you’re in that demographic teens, 20s or 30s, it doesn’t start in the 50s or 60s, IBS, then it’s almost certainly IBS. And don’t get talked into doing colonoscopies because you have bloating after you eat, even it’s fairly significant bloating. If you don’t have what we call GI worry symptoms and you don’t have a strong family history of Crohn’s disease or ulcerative colitis, just statistically speaking, it’s more likely to be IBS. What are the worry symptoms? You’re losing weight, pains are waking you up in the middle of the night, you’re seeing blood, you’re anemic, or you have some other blood tests that are markers of inflammation. If you got any of those, then you gotta consider Crohn’s or colitis.
Dr. Fox: And then as you said, for you guys, if you’re suspicious enough, just CAT scan and colonoscopy, and there you go, pretty much?
Dr. Kornbluth: Yeah. But again, if you got no inflammatory records, you got none of that, don’t let the doctor say you need a colonoscopy. But we’re pretty simple-minded folks. The gastroenterologist will order a CAT scan, the blood test, you would’ve had. Get a CAT scan and colonoscopy, either got it or you don’t.
Dr. Fox: Okay. So, someone is diagnosed with Crohn’s or ulcerative colitis, how would you treat them? And you can obviously do that. The things that are different between them, the things that overlap between them.
Dr. Kornbluth: So, in terms of treatment, virtually, every treatment that we have works for both. Virtually, every one of them. Again, we’re pretty simple-minded. We think of Crohn’s or colitis. There’s really just two questions. Where is the inflammation, and in that area, how severe? In Crohn’s disease, is it just your small intestine? And if it’s in your small intestine, is it 4, 6 inches, or 3 feet of inflammation? If it’s in your colon, is it a few inches or is your entire colon? Ulcerative colitis, the same thing. Ulcerative colitis always starts at the very, very bottom. You put a scope and you’ll know right away. It starts at the very bottom in the rectum and it proceeds upwards for some variable fashion. So, first, you gotta determine how much of the bowel’s involved, because that’ll give you an idea of the inflammatory burden, so to speak. But within that area, is it mild, moderate, or severe?
And what medications you choose will depend on that classification. For mild disease, in ulcerative colitis, the mainstay for 60 years has been drugs in the mesalamine family, which are known as Asacol, Pentasa, Lialda, mesalamine, etc. The very old version of that is Azulfidine, which also has sulfur, which makes it hard to tolerate. I know we’ll get to it. If you have a woman who is trying to get pregnant and is having difficulty getting pregnant and her husband happens to have ulcerative colitis, I’ll say, “Is your husband on Azulfidine?” They’ll say, “Yeah, yeah. Why do you ask that?” I say, “Because Azulfidine specifically, not the other drugs in that class, can cause a fully reversible decrease in sperm count and sperm motility.” So, before you let the…
Dr. Fox: Fertility docs go to work on you.
Dr. Kornbluth: …yeah. Fertility docs, you know, raking tens of thousands of dollars and put you through a lot of pain and shots and misery, tell your goddamn husband to get off Azulfidine. Before you know, you’ll get pregnant the next night. So, that’s important about Azulfidine. So, it’s mild to moderate is that class of drugs. In ulcerative colitis, where again, I said that the inflammation is at the very bottom, sometimes we give you the same kind of medication in enema form. If the disease is Crohn’s disease, those drugs don’t work, we have other drugs. But sometimes now we’re starting to think the very mildest Crohn’s disease, maybe you don’t need any medication at all if it’s not progressing. If disease becomes more severe, the big problem we’ve had all these 60 years is that steroids, prednisone, and associated medications work very well, but that’s the problem. For decades, doctors and patients said, “Gee, I feel great, I’m gonna stay on this.” And then it becomes the worst possible curse because long term it has a myriad of side effects that are irreversible.
So, no patient should be on any form of steroids, in this case, prednisone. Don’t confuse it with the steroids that the weightlifters use. For more than weeks to months, fill in the blank, blank number of weeks to months. Nobody should be on prednisone for six months or more because by then they should’ve been switched to another family of medication, of which we fortunately now have almost an embarrassment of riches in the last six years. And 25 years ago, there was truly a revolutionary drug, the first one of biologics, called Remicade. Since then, in that class, we also have Humira, Cimzia, and we have other older immunosuppressives that have lots of side effects that we’ve sort of gotten away from if we can.
Azathioprine and 6-mercaptopurine, they also suppress the immune system, lots of side effects. We’re trying to push those aside. Methotrexate, which is another old immunosuppressive drug, very relevant to this conversation. And then, maybe you could talk about the role of methotrexate to deliberately induce abortions. We’ll never ever give methotrexate to a woman of childbearing age because of the congenital defects it could cause. It’s truly could be even feticidal. So we avoid that. And I literally will write, now I don’t write, I use the computer, in big black letters, “If there was no other drug other than methotrexate, if you become pregnant, I will strongly recommend termination of pregnancy.” We almost never use methotrexate in women of child childbearing age for that reason, and because these days, meaning over the last 20 years, we have so many medications that are safer and more effective.
And besides the medications I mentioned, which are all in the anti-TNF family, Remicade, Humira, the ones that are most commonly used, and now what are known as biosimilars, which you should ask your doctor about. If you’re gonna get put on one, think of it as almost like a generic. We have drugs in other families that are in fact maybe as effective but far safer. Some of them are Entyvio, STELARA. There’s a new one called Zeposia, a class of drugs known as JAK, J-A-K, JAK kinase inhibitors, and our hipsters call them JAX [SP]. Those I point out are not yet studied in pregnancy, so we don’t use them if a woman’s pregnant or contemplating getting pregnant. Those are known as Xeljanz. Tofacitinib is the generic name. Or what is turning out to be an extraordinarily effective medication, also a pill, Rinvoq, which is upadacitinib. It doesn’t mean that they’re toxic to the mom during pregnancy, we just don’t have data. And in animals, they are in fact not safe to the fetus. So, for now until we have human data, we’re not using Xeljanz or Rinvoq. All the other medications I mentioned except for methotrexate, and we’ll get to how to manage during pregnancy, are something we emphatically do not stop in anticipation of pregnancy or during the pregnancy.
Dr. Fox: You mentioned a ton of medications, which is tremendous, and so many of them are new in the past six years or so, but conceptually, all these medications are really just meant to reduce inflammation, right? So, how would you choose one versus the other, right? You know there’s inflammation, so you’ll know whether it’s mild, moderate, or severe, where it is. Is it, like, one medication’s better for severe and one’s better for mild, or one’s better for this part of your intestines and one better for that? Or is it sort of like, we’re gonna try this, give it four months, and if it doesn’t work, we’ll go to another one? Like, how do you make that? Because you just mentioned, like, 20 medications, and you had none before.
Dr. Kornbluth: Yeah, I just rattled them off frankly to tell you. We don’t use methotrexate. Xeljanz and Rinvoq is a discussion for once we have more data. So, from mild to moderate, we stay away from the immunosuppressive drugs, which is basically everything else I’ve said besides the mesalamine. And if you go to any Crohn’s and colitis meeting, every doctor in the room is sitting there and what they wanna hear most about, and the lecture almost always has the word positioning, how do you position these therapies? Of all these biologics, which have tremendous benefit for many patients, which one do you choose and when? And I could sort of… Well, the cynical view is you choose the one that your payer, your insurance will allow you to have, which is unfortunately…
Dr. Fox: Start there.
Dr. Kornbluth: …an obstacle. Usually, we’re able to fight and appeal and fight the denials and get the patient the medication we think is best for them. But a lot of times, you have, again, this… It’s not an embarrassment of it, just, but we have several medications that can do the trick. The anti-TNF drugs, the Remicade, Humira, the Remicade in particular, I think everyone will agree is for the most sick, acutely-ill patients, certainly for the patients sick enough to be in the hospital. That’s the most effective. Problem is, all the drugs in that class, anti-TNFs have the risk of increasing the risk of infection and the dreaded word, lymphoma. So, patients have carried around for 25 years. Remicade’s been around a quarter of a century, 1998. That these drugs “cause cancer.” The reality is they don’t cause any cancers, they do increase the risk of lymphoma. The number I quote is somewhere around maybe 1 in 5,000, and the longer you’re on it, the greater the risk because the risk becomes somewhat additive, and younger people less so than older people.
So, there are drugs if you’re not really sick, that are probably nearly as effective and don’t have infection risk and don’t have cancer risk, things like Entyvio or STELARA. And now we have other drugs, the pills, which are newer, and you gotta sit in a meeting with 150 or 1,500 gastroenterologist who are trying to parse this out and sort this out.
Dr. Fox: And is it just because they’re all new and everyone is different and we don’t quite know why one works in someone and not in somebody else? I mean, is it something that maybe over time we’ll learn more with, like, genetic markers or certain something markers to try to say this one’s best for this person and this one’s best for that person?
Dr. Kornbluth: Yeah, maybe. When you decide to hang up your delivery tools, you should become a gastroenterologist. You’re asking all the right questions that we are so struggling with, which is, the term is personalized medicine, or precision medicine. When we have all these medications, many of which work in vastly different mechanisms, which one is better for which patient? So, again, the very sick patient, generally go to Remicade. Some of it is based obviously also unfortunately on the payer, some of it is lifestyle choices. Some of these are IV infusions every eighth week, namely Remicade or Entyvio, and others are basically injections you give yourself anywhere from every two weeks or as frankly, infrequently as every eight weeks, that’s STELARA.
Dr. Fox: You give it yourself at home, you mean?
Dr. Kornbluth: Right. So, if you’re traveling a lot, the injections every eight weeks especially are extraordinarily more convenient than having to be in a doctor’s office every eight weeks, which is not the end of the world, but every eight weeks. Especially if you’re going abroad, kids go to study abroad for a year, it’s a major, major hassle. Once in a while, we will actually switch them to one of the injectable meds to…
Dr. Fox: Temporarily.
Dr. Kornbluth: …[crosstalk 37:09] quandary.
Dr. Fox: Yeah, it is fascinating. What did you do 15 years ago, right? So, Remicade was around. Was that all you had? Because all these other ones are really pretty new.
Dr. Kornbluth: Yeah. So if somebody was leaving for a year and they’d been pretty sick, you know, we’re always reluctant to switch. You know, these patients, once they’re on the biologics, it indicates that they’ve been at least moderately active disease or even severely so, and we don’t wanna take them off a med that’s working and put them on a med from another class that may or may not work at all. So, we’re a little reluctant to what we call switch out of class, meaning use the medication that is a totally different family, a totally different, what we call mechanism of action, how it works for convenience. So, it was a problem. One of the drugs that is like Remicade a lot is Humira. It’s approved actually for 11 diseases, and as an aside was the largest grossing drug on a place called Planet Earth for the last 11 years. Last year was about $22 billion. It’s amazing. And it was a very effective drug. And it’s approved for 11 diseases, which is part of it.
Now, the advantage of that is most people use it as a self-injectable pen, not a syringe, every two weeks. And you can travel with it. Over the last few years, we’ve learned, does not need to be on ice. And people just take as many pens as they need to last them if they’re away for a while. Now, a lot of kids go for a year and the parents generally have found ways to get the kids their medicines. Because in a lot of these countries, the health insurance plan won’t pay for years for medications. These, by and large, all of these biologics I’ve been talking about, costs on the order of $50,000 $60,000, $70,000 a year.
Dr. Fox: Yeah. I mean, it’s very expensive, but someone that’s sick, not in the medicine, they’re gonna be admitted to the hospital three times a year, that’s also crazy. I mean, the reason they cover it is they sort of have to, but they know it’s actually long-term saving their money, saving everyone money because you have to go and, you know, be admitted to the hospital. If you’re in an intensive care unit, it’s like $50,000 a day. So, it’s, like, crazy. So now, you didn’t mention surgery, which is interesting, and obviously, you wouldn’t be the one operating on them, but clearly, you do recommend some people get surgery. So tell me who needs surgery?
Dr. Kornbluth: What I’ve learned from, you know, one of my other mentors who I treasure dearly, he took over for Dr. Janowitz in the late ’60s, David Sachar who since retired, his line was always, and he was a gastroenterologist, not a surgeon, is, “My job is not to prevent you from having surgery by using medications. My job is to get you better and a better quality of life. And often, surgery is a no-brainer.” For Crohn’s disease, when you have that narrowing that’s due to scarring, no med in the world is gonna fix something that’s already scarred and narrowed, and that, the surgeon will take out. And to paraphrase, and you know this expression [inaudible 00:40:04], “You should always use the name of the person who taught you something in their honor.” Dan Present, who essentially pioneered 6-mercaptopurine, 6-MP, is another student of Dr. Janowitz. He used to have an expression, and I’ll translate it, “If you’re coming in for uncomplicated Crohn’s surgery, ulcerative colitis tends to be a little more complicated surgery, these days it’s done laparoscopically,” we could translate in a minute, “you’re in on Monday, home for Shavuos.” In other words, you’re in the hospital about three, four, five days. Shavuos starts Friday night.
So, the surgery for Crohn’s disease in the right hands, and I stress the right hands, a surgeon who knows his way around Crohn’s disease, can be fairly straightforward. And we don’t blindly say, “Go for surgery,” we generally have started the medications. But a mistake is often made that the gastroenterologist, whose life is made prescribing medications says, “I could try one more thing, one more thing,” and we just belabor it, and the patients are getting sicker and sicker. Often, the best thing is we say, “A surgeon can make this better today.” Having said that, Crohn’s can recur, and sometimes, we will use medications after surgery to prevent it. Ulcerative colitis, frankly about 10% of patients traditionally have needed surgery. And I say traditionally because now with our newer meds, it might be less frequent. But that involves not just taking out a few inches, let’s say.
Dr. Fox: The whole colon.
Dr. Kornbluth: It’s just the entire colon. The entire large intestine comes out.
Dr. Fox: So they don’t have ulcerative colitis but they have no colon?
Dr. Kornbluth: Right. And we used to say, you know, “Surgery’s the cure.” And we’ll get to it because it impacts on delivery depending on what kind of surgery you’ve had. The operation that almost everybody has for ulcerative colitis is now done in about two or three stages, and that is, the first operation is to take out your entire colon except for about an inch or so of your rectum. You wake up and instead of stool coming out now through your rectum because the colon is gone, the surgeon has taken a piece of that ileum, which is the part that joins the large intestine, that ain’t there anymore, and brings it out to the skin. That’s called an ileostomy, where the ileum is brought to the skin. People know the word colostomy, that’s when a surgeon does an operation that brings the colon to the skin. So, all your intestinal waste, what used to come out as stool, now comes out of the ileostomy, which ain’t as horrible as it seems because at that point, all the intestinal contents are liquid. You’re not passing stool through there.
But most people or all people would prefer not to walk around with an ileostomy. They call that the bag, an ileostomy bag. That is temporary, because a few months later, once you recovered and you’re well, the surgeon comes back and he takes a couple of loops of your small intestine above that ileostomy, brings it down to where the rectum used to have been, shapes that small intestine in a shape generally in the shape of a J. So, it’s known as the J-pouch. And sews that small intestine that’s now in the shape of a J to that last inch of rectum. That operation is called an ileo for ileum, that’s the small bell, anal because he’s sewing it, he or she, just above the anus, actually to the rectum. An ileo-anal pouch. I, in the next sentence always say this, and exactly how I explain patients in my office, I don’t like the word pouch. People hear the word pouch, they think it’s a bag. The ileostomy bag is that. The pouch is basically your own intestine. It’s called the pouch because it acts as the reservoir that the rectum used to have done. Because that’s some very fine sewing or actually stapling, whereby the surgeon creates that J-pouch on that second operation, he or she will leave that ileostomy intact. So, the stool still comes out of the ileostomy, doesn’t come pouring into your new J-pouch a day later, lets that area heal, and a couple of months later comes back and basically puts the ileostomy back into the abdomen, sews your abdomen closed.
And I can tell you, these days, even the most complicated of those operations, perhaps the first one, I come in the next morning, first of all, the patients feel great. It’s amazing how much better they feel. Even though it’s less than 24 hours after surgery, they’re just smiling. And I say, “What is going on? Did you not have surgery? The surgeon cancel you?” They say, “No, I feel great for the first time in a long time.” Because basically, think of it, you’ve taken out a rotting, lousy gangrenous organ and all those toxins, is the way I think of it, have been removed. And these days with pain meds and the fact that it’s done laparoscopically, there is a whole different world of feeling better the next day.
Dr. Fox: You said earlier that people have this their whole lives in some capacity. Is there anyone who’s cured? Let’s say, let’s take out the person who had the colitis and the colons removed, fine, is there anybody who’s on these meds, you say who are cured and they never need it again, they never need meds or they’re on this forever, pretty much?
Dr. Kornbluth: Yeah. So that’s, you know, in plain English, it’s a sad truth, that you’re not cured. Ulcerative colitis, you take out that whole colon, you’re cured of ulcerative colitis, but…
Dr. Fox: You have the pouch and…
Dr. Kornbluth: …the pouch can get inflamed, we call pouchitis. It happens. Actually, about 50% of people have the pouch, but fortunately, it’s usually very mild. It gets better with a couple of weeks of antibiotics. And actually, the symptoms are very much like your old-fashioned ulcerative colitis, diarrhea. But it gets better almost always with antibiotics for a few weeks. And 90%-plus of people will have…who are sitting across the desk from me, and I tell them, “You need this operation, these three operations.” I tell the patient, and they’re extraordinarily dismayed, sometimes devastated by this concept. I tell them, “In six months and often sooner, you are going to tell me two things. I could promise you, you’re gonna say two things. Number one, I can’t believe I didn’t do it sooner. And number two, I can’t believe what I thought was an acceptable quality of life was an absolute disaster. Ten bloody bowel movements a day, walking around sick, 30-pound weight loss, always wondering where the next bathroom is, diarrhea, feeling horrible.” You get the operation and they feel better.
So, you’re gonna feel better if you have that operation, whether it’s Crohn’s disease or ulcerative colitis, if it’s well timed. Unfortunately in Crohn’s disease, most patients would have a recurrence in the “old days” before we started treating with preventive meds after surgery. Crohn’s disease and ulcerative colitis, if you don’t take out the colon, are unfortunately what we say, lifelong diseases. But hopefully, with the medication, we can bring you into what we say is a remission, means you are totally symptom-free, all the inflammation is truly gone. And that’s what we’re shooting for, a long-term remission, and that we have, “healed your small intestine or healed your large intestine.”
And I make this point very distinctly to the patients, we don’t use the word cure. To my mind, cure means you’ve treated disease in a way that it can never come back, and that’s unfortunately not the case with ulcerative colitis or Crohn’s, it can come back always. Often, it “burns itself out,” and what we shoot for is our medications work forever. We talk about healed. Your colitis is healed, your Crohn’s is healed, meaning you’re perfectly without symptoms, you’ll live to be 120, as we say, without any symptoms. That’s the goal. Can we achieve it most of the time? Not necessarily, but that’s the goal. But we can’t use the word cure, unfortunately.
Dr. Fox: Wonderful. Asher, thank you so much for coming on and talking about this.
Dr. Kornbluth: And talking and talking and talking.
Dr. Fox: No, no, no, you’re great. We’re having you back. We’re gonna talk about Crohn’s and ulcerative colitis in pregnancy, meaning before, during, and potentially after. And so, thank you so much for coming on. I appreciate it.
Dr. Kornbluth: Thank you so much for having me, Nate.
Dr. Fox: Thank you for listening to the “Healthful Woman” podcast. To learn more about our podcast, please visit our website at www.healthfulwoman.com, that’s H-E-A-L-T-H-F-U-L-W-O-M-A-N.com. If you have any questions about this podcast or any other topic you would like us to address, please feel free to email us at firstname.lastname@example.org. Have a great day.
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