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Crohn’s disease and ulcerative colitis are both chronic conditions that affect the colon, and they’re both lumped together under the umbrella of inflammatory bowel disease (IBD). But there are some major differences between the two. Colorectal surgeon Scott Steele, MD, explains those as well as who’s at risk and what it’s like to live with inflammatory bowel disease.

 

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Crohn's and Colitis: What's the Difference? with Dr. Scott Steele

Podcast Transcript

Nada Youssef:   Hi, thank you for joining us. I'm your host, Nada Youssef. And you're listening to Health Essentials Podcast by Cleveland Clinic. Today, we're broadcasting from Cleveland Clinic Main Campus, here in Cleveland, Ohio, and we're here with Dr. Scott Steele.

Dr. Steele is the Chairman of the Department of Colorectal Surgery, here at Cleveland Clinic. Thank you so much for being here, today.

Scott Steele:  Glad to be here.

Nada Youssef:   Sure thing. I want to kinda ask you some questions, before we start, just the icebreakers. First of all, would you rather read a book or listen to it, and why?

Scott Steele:  I would say historically, I would rather listen to a book, because I've got a lot going on. I like to multitask, but I do enjoy reading books, and I would say much more often read books than I listen to them now.

Nada Youssef:   Do you have a favorite?

Scott Steele:  My favorite book of all time is still Killing Pablo. I like Mark Bowden. I like the way that he writes. And for any of you Netflix people out there, the first two seasons of Narcos is Killing Pablo, the book, about that. And then, the subsequent seasons go on, but it's a great book. I just really enjoy it.

Nada Youssef:   Very interesting. I'll have to check it out. How about your favorite podcast?

Scott Steele:  Good question. I would say that like children, I have more than one podcast, and I love them equally. One is Butts & Guts, here at Cleveland Clinic. A Cleveland Clinic podcast, where we just kind of look at the digestive system, and surgical system, DDSI from mouth to butt, as we say.

Nada Youssef:   Mm-hmm (affirmative).

Scott Steele:  Going through all the ones. And then, I also have another podcast that I do that's called Behind The Knife, that I've been doing since March of 2015, and that's a little bit more doctor-facing, whereas Butts & Guts is a little bit more patient-facing.

Nada Youssef:   That's excellent. And you're the host of both of those?

Scott Steele:  I am, yeah.

Nada Youssef:   That's amazing. In an alternate universe, if you weren't in Madison, what would you be doing, besides the host of a podcast?

Scott Steele:  I would love to say that I was a professional athlete, but that my talents do not take me there. I enjoy woodworking a little bit. Maybe I would like to get more involved in that or something, where it could be just a little stressful, but that's what I'd probably do.

Nada Youssef:   Great, thank you. All right. Let's start with we're talking about Crohn's and colitis.

Scott Steele:  Yeah.

Nada Youssef:   Let's talk about, first of all, the difference. What is Crohn's? What is colitis?

Scott Steele:  What I would say is that in order to understand that, you've got to look a 10,000-foot view, and those go under what's called inflammatory bowel disease, or IBD. And really, when you talk about Crohn's and ulcerative colitis, you really have to think about there's actually a third one in there, that doesn't maybe get enough street cred out there, and that's indeterminate colitis. And so, there's about 15% of people that have a little bit of ties to both of them. We can't really determine one or the other.

Nada Youssef:   Okay.

Scott Steele:  There's some major overall differences between one. Typically, UC, when we think about that, we think about the fact that it starts at the anus and works its way backward, and only as involved in very the hind gut, the colon, the rectum and the anus, versus Crohn's can occur from mouth all the way down to anus.

Nada Youssef:   Okay.

Scott Steele: Both of them can have extraintestinal manifestations, meaning that they can have things that go up on your skin, or your liver, or your eyes, stuff like that. And then, Crohn's tends to fall within three different phenotypes, the way it manifests itself. Crohn's will either be a stricturing type disease. It'll be a fistulizing disease.

And for people out there listening to the podcast that don't know a fistula, think about a tunnel. It's something from one end to the other. It's got an opening versus a sinus, which is like a cave. It's got one opening, and it just ends blindly, and/or it can be a phlegmonous disease, so that it's got these large inflammatory phlegmons. So stenotic, fistulizing, or phlegmonous disease. Ulcerative colitis, again, tends to be mucosally-based, and typically involved in the colon, the rectum. And so, it's they're kinda under that umbrella of IBD, but there's three of email. Indeterminate with a little bit of each sign.

Nada Youssef:   Now, when you talk about UC, that's ulcerative colitis. Is there a difference between that, and just colitis, by itself?

Scott Steele:  Yeah. Colitis is just the general term. Remember where you add -itis to anything, and you've got inflammation.

Nada Youssef:   Okay. Good to know.

Scott Steele:  Desk-itis, inflammation of the desk. I mean, that's just the Latin term of what -itis.

Colitis, the general term just means that the colon is inflamed. It can be from infectious-type issues. You get a bad stomach bug, and your colon gets inflamed. C. difficile is a very classic one. Ulcerative colitis is an actual disease entity in and of itself, of which the colon be inflamed with the very typical manifestations of it is a part of it. That's a true diagnosis versus the generalized term, colitis.

Nada Youssef:   Okay. Can you have both ulcerative colitis and Crohn's?

Scott Steele:  That's a great question, that goes back to that third one that I was saying. The short answer is no. The longer answer is that there is definitely a spectrum, much more. We in medicine like to make things in a nice tight little boxes. It helps our minds go into it. But in reality, there are those patients. We always say there's about 15% of patients that you may think have one disease, that ultimately turns into the other. The classic one being that patients get diagnosed with ulcerative colitis, and they ultimately have Crohn's.

And the way that manifests in many cases, especially on the surgery side. A surgeon is they would get a surgical therapy for their bowels. For example, we take out their abdominal colon, their rectum, and we make them a new rectum called the pouch. And then, down the road, they manifest with Crohn's disease. There's a small chance of that. It's not like they caught Crohn's or something, like you caught a flu bug out there. What it is, is more they probably fell on that spectrum that they initially presented, much more like UC, but kinda Crohn's was lurking.

Nada Youssef:   Right.

Scott Steele:  That's not a common, but it's also not an uncommon type, unheard of pathway.

Nada Youssef:   Sure. Between Crohn's and ulcerative colitis, it looks like location is the difference. The biggest difference, right? But what are some of the shared symptoms besides something like inflammation?

Scott Steele:  Yeah, so they both can get problems associated with their GI tract. They can get diarrhea. They can get belly pains. The colon can be involved in both. You can have Crohn's colitis in both, versus ulcerative colitis. You can have extraintestinal manifestations in both, if they both have skin disease or maybe have some arthritides. There's no question that between the two, that there's certain extraintestinal manifestations that may occur with one of the two versus the other. Ulcerative colitis and having primary sclerosing cholangitis, which is an inflammatory condition associated the bile ducts and the liver, for example, just one.

The major difference between the two is not only the extent of disease from mouth, all the way down to anus with Crohn's versus just the colon and the rectum with ulcerative colitis. But it also is the thickness of what affects the bowl. So for example, if you'll think about the bowel wall.

Think about a Big Mac. You've got the bun, and you've got the muscle. And you've got the other bun, and that muscle being the meat patty within that, and you've got to all beef patties with special sauce  deal. The bowel itself on a histological level has mucosa, submucosa, muscle, and then serosa, then adventitia tissue. It's got layers to it.

Ulcerative colitis just affects the most superficial layer. It's a mucosally-based disease versus Crohn's disease can affect all layers of the bowel. So even though the bowel is very thin, if you feel it, Crohn's can go all the way through. And so, that's a very classic one, and that's why in Crohn's disease, you get things like fistula, because it can go all the way through the bowel. Versus if you see a fistula in the setting of ulcerative colitis, you should think does this person have Crohn's disease?

Nada Youssef:   Right. Let's explain what fistula is, for those who don't know.

Scott Steele:  Yeah. There's lots of different type of fistulas. When we talk about a fistula, again, it's a tunnel or a tract from something to something. Classically in Crohn's disease, there is a couple of different type of fistulas. The first one is on the bowel and that would go to another organ. So in entero, meaning small bowel, to cutaneous, to the skin. There's a connection between them. They drain bowel contents through there, or an enterovaginal through the woman's vagina to the bladder, enterovesical fistula.

Nada Youssef:   Wow.

Scott Steele:  They're named between where they come from and where they originate to. And because Crohn's is primarily a bowel disease, the inflammation is in the bowel, that second organ is oftentimes just a bystander. It just happens to be there.

Nada Youssef:   Right.

Scott Steele:  The fistula is a tunnel going from the pathologic bowel to the bystander disease and causing that.

The other part of the fistula that we see very common, especially in Crohn's disease, understanding that the vast majority of fistulas of this type are just run-of-the-mill luck, and that's perianal. So around your bottom, around your anus.

You can get fistulas in these type of diseases that occur with both Crohn's disease, but the much more common thing is you could have a fistula associated with non-Crohn's that is just originating from the little glands down there that make mucous, so that you get a little bit of grease, when you go to the bathroom that come out, and those glands can get infected, just like a boil on your arm can get infected. Your glands down there can get infected, and you can get a fistula. And that's, again, a tract from the anus to the skin. Crohn's disease can get a lot of them, and they can be big and windy, and they can be pretty symptomatic to patients.

Nada Youssef:   I see. Let's talk about risk factors, and if it's genetic and if risk factors are the same for both? Crohn's and UC.

Scott Steele:  Yeah. It's very interesting. A very common disease process, and we're finding out more and more. We know there are some genes that are associated with the development of having inflammatory bowel disease. There's IBD genes, the CARD15 gene, now too. There's a lot of different ones that are out there, but we don't really say that we can ... Patients can have a family history of it, but it's not like Mendelian genetics. Your mom has brown eyes and your dad does, or if you have blue eyes, somebody's ... Both pairs have got to have that. We don't pass it like that, but there's for sure tendencies that occur within a family history that you can pass things along.

There's been a lot of things that have been looked at in terms of what causes inflammatory bowel disease. There's no question it's probably multifactorial, and it has some environmental factors, where we live, where we're around. It's got some things that we're exposed to within that environment. It's got some hereditary factors. We know there's certain classes of population, where inflammatory bowel disease or Crohn's disease, even is much higher. The classic one is the Ashkenazi Jewish population. The rate of having inflammatory bowel disease is higher in that population.

And then, there's even some thoughts about more and more emerging about the gut's microbiome. All the little bacteria that live in there. They're being blamed for everything these days. We're trying to find a link with them, and that goes with Crohn's disease as well. There's been even some studies in the past that have suggested some bacteria that we're exposed to, that may lead to that. What may happen is you've got a bunch of different factors that come together, and trip off this cascade of events that are insusceptible hosts.

For whatever reason, you may have a makeup. I'm not saying you have Crohn's or ulcerative colitis, that have a makeup that causes you to be more susceptible to that. And then, depending on what you're made up of, what you're exposed to, and your family history, it all goes into sending that off. That's a long way to say lots of different things. We don't exactly know, but I think that hopefully within going forward, we'll be able to kinda hone down on that, even more.

Nada Youssef:   Okay. Let's talk about diet a little bit. Are there any kind of foods that can cause or trigger these kind of conditions?

Scott Steele:  There's no real foods that are linked to necessarily saying that you're going to get inflammatory bowel disease. There's definitely foods that you can get colitis from though, and that's just like ...

Nada Youssef:   There is.

Scott Steele:      Yeah. Yeah, you have a bad bug, right? And you can, and that's ...

Nada Youssef:   I see what you're saying. Yeah, yeah.

Scott Steele:  So again, going back to colitis being the inflammation associated with the gut that you can get bad diarrhea on, or colitis. There's definitely, if you're having an inflammatory bowel disease patient, there's definitely trigger foods that will set off certain people, and that can change within the person. You, yourself, may find yourself in a situation, where you say secretly, "God, I can't eat pepperoni because I know that gets my stomach upset." And somebody else might say, "Man, I can eat it raw, and it's not a problem." Foods within themselves act much more like triggers than anything else associated with the inflammatory bowel disease.

Nada Youssef:   It just depends on who's susceptible to getting that kind of ...

Scott Steele:  Yeah, I would say that.

Nada Youssef:   Yeah, and what kind of demographic is mostly diagnosed with this disease?

Scott Steele:  It can touch everyone. There's no question. Like I talked about before, there's certain ethic groups that are much more in the classic one, being the Ashkenazi Jews that I talked about before. It definitely can also run in families. We talk about a 15 to maybe 20% risk associated with having it run into families.

Nada Youssef:   Okay.

Scott Steele:  A Caucasian population, for sure, more. But there's definitely there's Asians that can get it, African-Americans, African. It can be all over in terms of that.

Nada Youssef:   Okay. And so, how do you diagnose Crohn's and colitis, and what kind of tests need to be done?

Scott Steele:  In general, it's a clinical diagnosis. There is not a blood test that you can run. They've definitely had blood tests that we've used in the past that are much more, and there is still tests that are available out there, that are called IBD panels that will run pANCA or pASCA, they've done in the past. These are the names of the small tests. That if they're positive in one light or other, or even have a particular pattern, that you may say you're more apt to not only have inflammatory bowel disease, but you could have Crohn's instead of ulcerative colitis for those patients that don't fit a particular diagnosis with everything that's in a way, shape, or form.

What I will tell you is the fact that we still look for symptoms. Patients will present, and they may have belly pain, or they may cause to have a belly obstruction, or they could have multiple bleeding stools, where they wouldn't have before. In the type of tests that we use at our disposal are making sure, first and foremost, that we get a good physical exam. We look for things like what's their belly like? Do they have fistulas, that I talked about before? Radiographic tests are still a mainstay, things like a CAT scan, or there's special types of CAT scans or MRs that are called MR enterography, or MRE, or CT enterography that look closer at the bowel to see the degree of inflammation associated with the bowel.

And then, we also use endoscopy. We can do scopes that look in the colon. Your standard colonoscopy, or scopes that look down into the stomach, and we kinda put together this whole picture and based on all pieces of the pie, and very quickly, you can come up with a diagnosis. So somebody, who has then gets a scope, gets biopsies, and it looks like it's kind of a classic histological example of Crohn's in the setting of also having disease in the colon is also in the small bowel, and they fit that type of image, you're going to say they've got Crohn's disease, and then they're treated as such.

Nada Youssef:   Speaking of scopes, there's, I think, three really main ones, right? There's a colonoscopy, endoscopy, and sigmoidoscopy Can you talk about the difference between those, and what they are? Just in case a patient gets to hear that they have to get that done.

Scott Steele:  Sure. Endoscopy is just a general term for meaning we're going to put a scope somewhere inside of you, and that can go into an orifice. Think about all the different orifices, that's endoscopy. So even an ENT scope can go look up in the nose or in the mouth, and they're technically doing endoscopy.

Nada Youssef:   Okay.

Scott Steele:  Sigmoidoscopy and colonoscopy, or esophagogastroduodenoscopy or EGD, are all fancy words with the ending -oscopy. So -oscopy is you're looking at it, it's a scope. You're going to look. And then, what you're looking at is that prefix. So colonoscopy is a longer scope, and it can look all the way around the colon. Remember, the colon is about six feet long.

Nada Youssef:   Six feet?

Scott Steele:  Yeah, it's about six feet long.

Nada Youssef:   Wow.

Scott Steele:  And some people have longer than others, but it's about six feet long. A colonoscopy, you attempt to look at the whole scope. And then, in many cases, what we can do is we can get through the little valve that connects your small bowel to your large bowel, down by your appendix, called your ileocecal valve. And we can get a sneak preview at the very end of your small bowel, which is called your terminal ileum.

A flexible sigmoidoscopy is essentially a shorter scope that classically can only look for the left part of your colon. So your anus, your rectum, your sigmoid colon going backwards and your descending colon. That's about 70 centimeters. And occasionally, in certain people are easier to scope, who don't have a big loopy sigmoid colon. You could actually even get up to the transverse colon in a lot of these people, but it's classically a left-sided scope. They're called flexible because you can move 'em. There are such things called rigid scopes. And in our case, in the field of colorectal surgery, we use a proctoscope, which tends to be a rigid tube that you use handheld air to blow up the colon and get a good look at the mucosa.

Those things are things that can be done in an office. A proctoscopy, an anoscopy, where you only look at the anus, or even a flexible sigmoidoscopy. But colonoscopy in general, even though I've definitely had patients. And I, myself, when I had my colonoscope, I tried to do it without medication. I got about halfway around, before I said give me the juice. But most of the time, you need to have a full bowel prep, where you drink all the stuff, go to the bathroom, and then you get some sedation.

Nada Youssef:   Okay. This is what to expect. You're going to have some kind of prep. It's going to cleanse your system.

Scott Steele:  Yep.

Nada Youssef:   Right. And then, pretty painless with some drugs?

Scott Steele:  Yeah. What I try to say, and this goes for all colonoscopy, for both colitis, IBD, ulcerative colitis. If you're just in there for a routine colorectal cancer screening type, full colonoscopy, probably the worst part of it still is the prep that you would take the night before, and maybe in the morning, depending on what your doctor prescribes for you.

Nada Youssef:   It's a big jug, right?

Scott Steele:  There's a lot of different types of preps out there, and there's pills and other things. We're trying to get to the point, where we get ... But there is still the vast majority of patients are going to drink stuff that's going to make you go to the bathroom.

Nada Youssef:   Okay.

Scott Steele:  You're going to drink it in the beginning. If you are one of the lucky few, who get the big jug out there and you're not going to go right away. And then, all of a sudden, it's going to hit you, and you're going to spend some time in the bathroom. But it does a wonderful job about cleaning out the bowel, and then it ...

What people may not understand out there is the fact that the bowel itself, even if you're somebody who goes to the bathroom a lot, we all carry a lot of waste stool in our colons and in our bodies, and that cleans it out. The other thing is that the colon itself, by and large, is collapsed on itself. It's got a lumen to it though, just like a garden hose has a lumen to it, but the garden hose wall is stiff. Your bowel is soft, so it kinda collapses. We use air to blow up the colon. The other part of the endoscopy is we not only put in the scope through, but we're also blowing in some air, so we can take a good look around, and make sure that there is no pathology in there.

Nada Youssef:   Okay. Great. Sounds interesting. Now, is there a cure?

Scott Steele:  Well, for ulcerative colitis, let me just step back and I would say that in general, just like there's a spectrum of diseases, there's also a spectrum in terms of how potent that particular person is. Meaning that I definitely have had patients with ulcerative colitis and Crohn's disease that really they're not that affected, and some patients with really mild cases, they may be on minimum medications at all. Or in some cases, they don't even take medications. They just kind of cure it with diet, or do whatever. Not cure it with diet, but manage it with diet.

There's other patients that despite the strongest drugs that we do, and the strongest medications that we have, they still have complications associated with it. And so, if you take a look within those, we know that there's different classes of medications as well as surgery that we use in order to control the disease, and also control the manifestations of the disease, which could be complications associated with the disease.

Nada Youssef:   Sure. Flares, things like that.

Scott Steele:   Exactly.

Nada Youssef:   When is surgery needed?

Scott Steele:   In general, just to get back to the medications and surgery, what we talk about is we talk about ulcerative colitis, you have a certain set of populations that may decide that they're going to be managed with medications only and they're successful managed with that or they're not, or patients don't want to take the medications. And so, ulcerative colitis could be "cured" by taking out all the affected bowel.

What we do in that case is the affected bowel for ulcerative colitis is the rectum and the colon. We can remove that and patients in the old school could either get a permanent bag. Or nowadays, what we're able to do, even through minimally invasive procedures is to be able to make some small incisions, remove the colon and the rectum, and make them a new rectum using their small bowel called a pouch. And that pouch is called a J-Pouch or an ileo pouch, and there's different types of configurations, but the most common, the workhorse one is the J-Pouch. And so, patients theoretically can be cured of their disease with ulcerative colitis by doing this.

Crohn's disease, again thinking about not only the medications, there's different classifications for both of these diseases. On the short end, there's things called aminosalicylates. Then, other people can be put on some of the biologics or the immunomodulators, and they've got all sorts of different names and ways that they work to affect our inflammatory system to try to quell that inflammation, and they can be adequately controlled. For Crohn's disease, it's a little bit different in terms of cure. It's hard to say that you can really cure Crohn's disease, because again it occurs from mouth to bottom. And there's not just a set area that we can cut out in that, because the rest of the bowel could still be affected.

Nada Youssef:   Sure.

Scott Steele:   In those cases, we typically operate in general for Crohn's disease for complications associated with the disease. So patients who perforate, patients who have fistulas that need to be taken care of, patients who get stricturing over time and get a bowel obstruction, or patients who continue to have problems associated with nonresponsive to the medications that we need to go in there and take out that. With Crohn's disease, we don't necessarily say, "Hey, we're going to take out all of your colon and rectum and give you a new pouch," because it can just occur again in the small bowel, and you could be having problems with that. We try to limit our surgery on the disease aspect of where it's causing patients to have problems. We talk about function as well. You always want to consider because you can't just stop chomping away at the bowel, or you'd be left with too short a bowel and patients won't digest well, and they'll have a failure to thrive.

Nada Youssef:   I was going to ask about that. First of all, I want to clarify, J-Pouch, you said it's internal, right? I mean, it's literally you're making ...

Scott Steele:   Yeah. Thanks for giving me the opportunity to say that. A lot of patients will oftentimes hear the term pouch, and they'll think a bag, and they'll think of ostomy.

Nada Youssef:   Yeah, like a stoma bag.

Scott Steele:   Yeah.

Nada Youssef:   Right.

Scott Steele:   When we talk about a stoma, so a stoma versus a bag versus an ileostomy versus a colostomy, all these different terms really are meaning the same thing.

A stoma is just, again, we talked about endoscopy and flexible sigmoidoscopy and colonoscopy. What we talk about in stoma is opening. Your mouth is a stoma. It means opening.

But a stoma, when we think about it on the belly is essentially an opening of the bowel to the skin. And ostomy is that art of bringing the bowel up to that, so an ileostomy is when we bring the ileum up, which is the tail end of the small bowel.

The colostomy is when we bring the colon up, and it's a colostomy that you have and patients wear a bag, so that the waste can go into the bag and they can live a completely normal functional life associated with that.

A pouch, the way that I think about pouch and the way that we're describing it today is constructing essentially a reservoir, a holding tank. Your rectum is just a holding tank for stool, and I've got news for you, it's nothing fancy. It's an area, when stool goes down and reaches the rectum, you get the sense that you're like, uh-oh, I've got to go to the bathroom, but your rectum expands and allows you to have the ability to say, "I'm going to finish the interview, and then go my deal, instead of just right there." It allows you to essentially have that capacity to hold stool.

The pouch that we make is essentially called a J-Pouch, only because of the fact that we take the end of the small bowel, and we bend it on itself in the configuration of a J. There's also an S pouch, that we add one more turn to it. There's actually even a W pouch that's been described, but the workhorse is still the J-Pouch that we use, and that is the bowel itself on the internal, so people don't have to wear a permanent bag. As a matter of fact, there's different types of pouches that we make, so that they don't have to do that. Wearing an ostomy or bag on the outside is definitely a part of the process. And what I mean by that is the fact that if you had bad ulcerative colitis and you're on a bunch of different medications, oftentimes you get referred to us as surgeons because they're sick.

And so, we may do a multi-step procedure to get them to the point, over months, to the point where they don't have to wear a bag. And so, the first operation may be, say I'm going to remove all of your colon because that's pretty sick and bring a loop of bowel to the skin in ileostomy. The second operation of the procedure, a few months down the road is going to be I'm going to take out that rectum. I'm going to make you that pouch, that new rectum with the small bowel, and connect it down to the bottom, down to your anus. And again, I'm going to bring up a loop of bowel to the skin, so that stool can be diverted, so that pouch can heal. And then, a couple of weeks down the road, I'm going to be able to take this down.

The fact that you wind up with no bags, but it's occurred over a few months to get you to the point where you're there. And so, patients can oftentimes get exactly, like I wasn't super clear before, confused with the terms pouch versus bag versus ostomy versus everything. There's even a type of pouch that we make here at the Cleveland Clinic. It's one of the few centers that do it, that's called the K-pouch or Kock pouch. And that type of pouch is a pouch that you also don't have to wear a bag, but it's for ones that we actually bring to the skin, and it's something that patients can ... We make. It's kinda got a ball valve to it that we bring up to the skin, and you intubate that with a tube. You drain the waste, and then patients can go about their lives and do whatever they want to do and not have to wear the external bag. And then, every so often, they just go ahead and intubate the pouch. And again, we're one of the few centers in the world that do that.

Nada Youssef:   Is this something, if someone had the old style stoma bag, can they get this new K-pouch?

Scott Steele:  Yeah, there's a lot of considerations to it. Yeah.

Nada Youssef:   Mm-hmm (affirmative).

Scott Steele:  Kock pouch has been around a long time, and there's certain aspects, that where people would want or not be able to do it.

Nada Youssef:   What would you say to someone that has a stoma? A stoma bag is the one that would be an external bag, correct?

Scott Steele:  Correct.

Nada Youssef:   For quality of life, what kind of things should they be expecting? What to do, daily, things like that.

Scott Steele:  There's a difference between a colostomy and an ileostomy for sure. In general, if you just think about the fact to digest. And so, when we eat, kinda take a step back from the question to really kinda understand this. When we eat, the process of digestion is we eat, it goes down in our stomach. Our stomach starts to use the acid, and then it gets the enzymes from our pancreas and our liver. It works it way through the small bowel, where really it gets not only broken down, but we get a lot of our nutrition that's absorbed and everything. And your bowel actually secretes fluid in, and also absorbs fluid out, to the point where ...

And when it goes through your jejunum, which is several feet of jejunum and your ileum, which is the tail end of the small bowel, it comes all the way down here. In most people, down to their right lower quadrants, where your appendix sits. That stool, when it reaches the colon, is still kind of a thinner liquid. Maybe in the best of worlds, it's maybe like a grits or something like that. But by and large, it's pretty liquidy.

Your colon's job actually, with the workhorse of it being the right side of the colon is to absorb water. And so, then it absorbs water throughout the colon. And by the time it gets to the left side, it actually forms stool. And so, certain people, for whatever reason may be not as either efficient or that, or they can't kinda form stool and they have looser stool. Again, the looseness of your stools are how many times you go is so individualized. There's definitely probably men go more often than women, but there are so many things, our emotions, what we eat, the time of the day, your patterns that you fall into, go into how many bowel movements you have. I would say a very common question that I get asked.

Nada Youssef:   Sure.

Scott Steele:   But to go back to the question you asked at hand, what to expect? If you're somebody that is missing your colon, you've got to go back to what is natural. If it's natural for you to typically have a little bit more liquidy stool, if you have an ileostomy, then that stool that's going to come in the bag, tends to be a little bit more liquider. Now, over time, your small bowel gets much more efficient, and you'll see it thicken up a little bit. And what patients notice with an ileostomy is the fact that oftentimes, depending on what they eat or sometimes we'd put 'em on bowel-slowing medications, or bulking agents like fiber, Metamucil, Citrucel, some of these other things, or bowel-slowing medications, Imodium, some of these other ones, that will thicken it up, so it gets to be a little bit thicker.

If you have a colostomy, you've got all your colon in play, or for people that have part of their colon removed, some of your colon in play, to the point where your colon still has the ability to do its job. For people who have a colostomy, they may, just like they have a bowel movement, what comes out of their colon may not be as often, and it may be thicker stool. And so, I definitely have patients with a colostomy that can almost train themselves over years to have a bowel movement just through that. And sometimes, they wear a bag, and I've got a small amount of patients that actually don't even wear a bag, that have been able to do that. But it goes back to the anatomy and the physiology of how we're wired, such that you could say that what to expect is much different from somebody who has a colon to that's to the skin versus an ileum, that's to the skin.

Nada Youssef:   Okay.

Scott Steele:   The one point that I would like to make sure that patients, especially patients that are faced with the recent being told that if you go through this, you could wear a bag and that bag could be permanent. That's not only something that is body-altering, but it's mind-altering.

Imagine if I told you, right now, I don't know you. I'm assuming you don't have a bag. But if I told you, right now, and I said, "Listen, whatever's going on with you, you're going to have to wear a permanent bag." That's a shock to most people's systems.

Nada Youssef:   Yeah.

Scott Steele:   One of the first things they say and a very common thing that I've faced, "Oh my God, I'd rather die." My own mom said this, when she was faced with her terminal illness. She said, "I'd rather die, Scott, than get one." And then, it kinda sits in, and what most people find after they go through is in many cases, their quality of life was better than it was before and you can do everything.

I have buddies that have climbed mountains, done Iron Mans, done just about you name it. I have somebody that fashioned this wonderful padding apparatus, so she could still play rugby using a bag. And you'll find that not only can you do everything that you want to do, but you can continue to have that solid quality of life. And in some cases, patients had been trying to avoid a bag or avoid an operation that had the threat of having a bag for far too long, where they lost their quality of life and it's not an uncommon finding that they come back to me in a postoperative setting and say, "God, I wish I would've got this thing a long time ago, because I've been suffering for a long time."

Nada Youssef:   I'm glad you touched on that. I think it's very important.

Let's talk about some lifestyle changes for people with Crohn's and colitis, from stress management, exercise. I know we talked about diet, but if there's any kind of food that triggers, or anything like that. What is the ideal lifestyle?

Scott Steele:   What I would say is that I would hope that for most people, that they would have a very normal lifestyle. That they would fall into a pattern, they could be either taking care of any complications that they might have with medications, or even with surgery to get back then to doing everything that they wanted to do. There is no question though that there are certain foods that trigger, and that the foods, like we talked about before, that may trigger one Crohn's or ulcerative colitis person, may not be others.

Scott Steele:   There's definitely diets, elemental diets, or other diets, especially in kids. Specialized diets that they may do, that are out there that certain GI doctors use that could for the severest of Crohn's patients will still allow them to get to be able to take in nutrition through the mouth and have weight gain, not have weight loss and be nutritionally replete.

But in terms of being able to exercise and being able to do all the things you want to do, there is really nothing that they can hold them all the way back from doing that. During a flare, there is no question that patients can be sick. And depending on the degree and kind of potency of that flare and where it affects, especially with how that flare is. Is it bloody diarrhea that won't come down? Is it abdominal pain that just is occurring? Is it a bowel obstruction that can come up, or is it a fistula that has reared its ugly head?

Depending on what's going on with that patient, may affect that time that may have to be taken care of with either medications and admission to the hospital, going on IV nutrition during that time, or even surgery that we have to think about. But in general, I guess the biggest take-home message to answer your question is their quality of life, the things that they do, the exercise, and hopefully even some of the diets that they eat. If their disease is well-controlled, it can be as normal for them as for anybody else.

Nada Youssef:   That's great. Excellent. I wanted to go back to the microbiome. I know you were talking about like the gut germs.

Scott Steele:   Mm-hmm (affirmative).

Nada Youssef:   Are any changes in the microbiome, in your gut, would that change things for Crohn's and colitis.

Scott Steele:   I think that's what's going to be the next horizon. As a matter of fact, I know that us, like other institutions, are collecting stool samples and getting biopsies and stuff, and really studying the role of microbiome for inflammatory bowel disease. There's some preliminary reports that have some suggestions. We're not there.

Nada Youssef:   Okay.

Scott Steele:   But I do think that's the next thing on the horizon, just like it's the next thing on the horizon in terms of healing, when we put bowel specimens back together. When we cut out a piece of bowel and link them up, and whether or not that leaks. John Alverdy, out of the University of Chicago has done a lot of work in this. Cancer operations, Matt Kalady, here in my department has NIH-funded research that's looking at the role of the microbiome.

We have a lot of different things, and I know that our GI department, led by Dr. Miguel Regueiro, who is our chair here, and others within the DDSI are taking a look at the role of the microbiome in terms of what it does. Not only in terms of causation, but treatments and then also things like flares, and how we can affect it.

Nada Youssef:   Great. Now, I want to talk about with Crohn's and colitis, patients, do they have an increased risk for colorectal cancer?

Scott Steele:   Yeah.

Nada Youssef:   Should they get their colonoscopies earlier?

Scott Steele:   Absolutely. In general, what we talked about in the past is it used to be thought if you go back 20 years, that maybe it was just ulcerative colitis that was associated with increased risk. And what we've found inflammatory bowel disease does have a higher risk in general than the general population.

Really, when you break that down further, if you can take a look, especially as it goes to colorectal cancer, there's two things that we think of. The first one is the length of time that you've had. So meaning that if you've had it for a long time, that's had that inflammation, which is one of the potential things that can cause the cells to go awry and ultimately trigger on a tend towards either having dysplasia, which is the cells look funny underneath the microscope. It's along the pathway to cancer versus also the degree of how much of the bowel is infected.

If you've had it longer or if your gut is more affected, a pancolitis, instead of just maybe a part of your colon, those patients that have had it longer and the more their colon is affected are at a higher risk, and that is for both Crohn's and for ulcerative colitis.

The one thing that I will also say about that is the traditional pathway to having cancer in non-IBD patients has a pretty set pathway, where you go through a polyp. The polyp becomes dysplastic. Dysplasia goes along and then ultimately you get a cancer. There's other types of polyps that have different pathways, and whether it's BRAF or serrated polyposis. There are all these fancy doctor terms. You've got to think about it. You're starting with somebody that's something that's normal and you're going to something that's abnormal and ultimately invading into the bowel, and that's the diagnosis of cancer.

IBD pathway can be a different pathway, and that pathway is outside of the traditional pathway of the adenoma to carcinoma sequence. So not only is it important that we control their inflammation, but that we also follow them to be able to say that we want to follow you at a more frequent interval to make sure that you don't have cancer because it is a higher risk than the general population.

Nada Youssef:   Sure, sure. Great. Last question for you.

Scott Steele:   Yeah.

Nada Youssef:   I want to talk about when it comes to pregnancy for women, because I have a lot of friends that are childbearing age, and some do have UC. I just wonder, is it hard for women to get pregnant? And if they do, what does that mean for the baby? Do they go through intermission during, or what's going on with that?

Scott Steele:   Yes. This is a whole ... I think that it's been around. It's been something that's been known for a long time, that there is no question that some of the inflammatory things, including inflammatory disease affect women's ability to get pregnant. But it's not talked about a whole lot, and we don't ... To know exactly what degree, I know that there's multidisciplinary clinics that are taking a look at that. I will say this falls into two different patterns.

The first one that you have to think about is you have to think about the fact that what is going on in terms of the overall system that might be affecting their ability to get pregnant. The second part is, is there any aspect in terms of some of the things we do to them as surgeons, or even the medications that may affect that. I think the medication is the aspect of that, especially with some of the newer biologics, remains to be seen. And that's something that with time, we'll be able to know that maybe there's certain medications that make it more difficult than others.

What I can tell you from a surgical standpoint is that any pelvic operation that we do, including one of the ones for ulcerative colitis has the potential to form scar tissue. And the woman's ovaries and their fallopian tubes are sitting, right down in that area. And so there's been times in the past, where we've had people come in and their fallopian tubes up, so to kinda get 'em out of the pelvis, or even at the time of the operation, wrap the fallopian tubes in some antiadhesive type things. People have tried a lot of different things to try to minimize that scar tissue. Probably one of the best things that's come along is having minimally invasive surgery. Some of the minimally invasive surgeries that we do, like here at the clinic, allows you to have less scar tissue. Which then will have that secondary scar tissue, hopefully not there, towards where a woman's fallopian tubes and the ovaries are, so that it increases the chances to get pregnant.

The second part of that question is, is that oftentimes, for example, let's use this situation, where somebody had their rectum and their colon removed. They had a pouch. Now, they get pregnant, which is absolutely possible. Many women do that.

Nada Youssef:   Yeah.

Scott Steele:   Is that a high-risk pregnancy? And in many cases, that is considered a high-risk pregnancy, and then it goes through the whole process of should they have a C-section, or can they have a normal vaginal birth. Those are some of the questions that we kind of go through and with our perioperative and our gynecology people to kinda discuss, because that's definitely some things that we need to think about.

Nada Youssef:   Sure, sure. Wow. We're out of time, and that was lots of information. Thank you so much.

Scott Steele:   Thanks for having me here.

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