Inflammatory Bowel Disease – PediaCast 215
Inflammatory Bowel Disease affects 1.5 million Americans—many of them children. Join us in the PediaCast studio as Dr Wallace Crandall and Dr Mike Patrick take an in-depth look at IBD. We cover the similarities and differences of Crohn’s Disease and Ulcerative Colitis, including risk factors, etiology, symptoms, diagnosis, treatment, complications, and long-term outlook. When a child has IBD, parents have lots of questions. This week, PediaCast has the answers!
- Inflammatory Bowel Disease
- Crohn's Disease
- Ulcerative Colitis
Announcer 1: This is PediaCast.
Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike!
Dr. Mike Patrick: Hello, everyone and welcome once again to PediaCast, a pediatric podcast coming to you from the campus of Nationwide Children's Hospital. This is Dr. Mike. I'd like to welcome everyone to the program. It is episode 215, 2-1-5, for June 12th 2012. We're calling this one Inflammatory Bowel Disease.
Now, many of you out there maybe kind of scratching your heads and saying what in the world is inflammatory bowel disease and do I care about this? And the answer is you should. It affects lot of people, 1.5 million Americans, including lots of kids, particularly teenagers and it's something that if your child has the symptoms of an inflammatory bowel disease you're going to definitely want to know so that you can get them the help that they need.
Before we get to the meat of the program, I want to welcome everyone. We are definitely counting down here to June 20th. And that is when our brand new hospital officially comes online. An exciting time here as I've alluded to in the last few episodes. We've got this fantastic facility that's coming online. Twelve stories tall, each floor the size of a football field, in fact they're calling with the center elevators are the 50-yard line.
But the thing is it's big but it's not impersonal and I went on a tour recently with some mommy bloggers and we really got to see their reactions to the hospital. So I've got on tours and we've had tons of staff orientation and learning all about the new facility and where things are and how to get from place to place. But that's always been with staff. So this is the first time that I was able to experience some outside folks coming in and I have to tell you, they were impressed.
It is very child-friendly as you can imagine. In fact, one of them likened it to Disneyland. So it's child-friendly, even though it's big it's not impersonal and there's a really fabulous way finding system with touch screens all over the place that you can just touch, it tells you where you are, you find where you want to go and it gives you exact instructions on how to get there. And if you have any questions along the way you just go to another screen, touch it and it'll tell you where you are and how much further you have to go and exactly what course to take to get there.
So really exciting times here. We did have this past weekend a couple of fantastic staff and community grand opening events that I had mentioned were going to happen. It was great! Just an outpouring of support, lots of food and fun, educational activities, tours of the new facilities for the community. I mean, when does a brand new hospital open it doors to anyone in the community and says hey, before we start using this for kids, check it out; walk around, tour it, go up and down the elevators, check out the emergency department before it's crazy with staff running around, just take your time and really explore it and look around.
So that's what we did. Now if you aren't in Central Ohio or if you are but you haven't been able to make it to any of the on-campus celebrations, you can still take part in the excitement. Here's how you do it, just go to the grand opening page on our hospital website. The link for that is nationwidechildrens.org/grandopening and if you like, we'll make it a little bit easier for you just go to the Show Notes at pediacast.org and we'll put a link there for you.
This site includes lots of pictures and videos, both of the inside and outside the hospital, an interactive map, a campus tour, so you can really check it out and see what it's all about. Look under the hood. You can do that at the grand opening page at nationwidechildrens.org.
We'll also have a link for you in the Show Notes to our special Wishing Tree Project, which we have mentioned a couple of times here in the past. That's at wishingtree.nationwidechildrens.org. It's also a way for you to join in with our grand opening celebration. The Wishing Tree Project provides an opportunity to share your wishes with the world and a chance to reflect and in some cases pray over the wishes of other families. So to be sure to check that out, again wishingtree.nationwidechildrens.org.
We also have a brand new and I'll mention that it's free mobile app that's designed for iPhones, iPads, Androids. Now if you have a Nationwide Children's mobile app, you probably have the old one. So we have a brand new one, it's called myChildren's, all one word, kind of a theme for today's show, all one word, myChildren's. And it's available for download in the iTunes store and on Google Play.
Now this new app not only provides great information about our facility like locations, hours, directions, physician profiles or for all information, I mean it has all of that, which you would expect, but it also provides an easy link to all of our social media offerings, including Facebook, Twitter, Pinterest, YouTube and of course, PediaCast. It also gives you some helpful hints and this is one of the questions of one of the mommy bloggers that I went on a tour with, was like how do you prepare for taking your child to the hospital? What do you tell them what to expect, what kind of things do you bring with you if you have an appointment for radiology or you're going to be admitted as an in-patient? How do you prepare your child for an admission to the hospital? What to expect? What things do you bring? And those kind of answers are also included in this mobile app. So we're really excited about that.
All right. So let's turn our attention to today's program. We're going to discuss inflammatory bowel disease, commonly referred to as IBD. There are two major forms of IBD and this includes Crohn's disease and ulcerative colitis and these two diseases affect 1.5 million Americans, including many children and to help us breakdown the who, what, when, where, why and how of inflammatory bowel disease, we have a great studio guest lined up for you today.
Dr. Wallace Crandall, MD, is a pediatric gastroenterologist here at Nationwide Children's Hospital. But before we get to him, I want to remind you that if there's a topic that you would like us to discuss, if you have a question for me, just head over to pediacast.org, click on the Contact link. You can also email email@example.com or call the voice line at 347-404-KIDS. That's 347-404-K-I-D-S.
Also, I want to remind you the information presented in every episode of this program is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. If you have a concern about your child's health, be sure to call your doctor and arrange a face-to-face interview and hands-on physical examination.
All right. Let's turn our attention now to our studio guest, Dr. Wallace Crandall, MD, is a pediatric gastroenterologist and director of the Center for Pediatric and Adolescent Inflammatory Bowel Disease here at Nationwide Children's. He's also a professor of pediatrics at the Ohio State University College of Medicine and an active member of the Crohn's and Colitis Foundation of America where he has served at the regional and national levels. Dr. Crandall also serves on the executive committee and is the director of quality for ImproveCareNow, a national multi-institutional pediatric IBD quality improvement collaborative. And he's chair of the IBD Committee of the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition. All of these makes him very well qualified to discuss Crohn's disease and ulcerative colitis, which is a good thing since those diseases are today's topic on PediaCast.
So welcome to the studio, Dr. Crandall.
Dr. Wallace Crandall: Thanks for having me.
Dr. Mike Patrick: We really appreciate you taking time out of your busy schedule to stop by and tell our listeners about these diseases. I guess a good place to start is what really is meant by the term inflammatory bowel disease?
Dr. Wallace Crandall: So the inflammatory bowel diseases are conditions where the immune system and the intestine basically is overactive so it causes inflammation in the intestine that's ongoing rather than in a sort of controlled state.
Dr. Mike Patrick: Right. And as I mentioned, two common types of inflammatory bowel disease would be Crohn's disease and ulcerative colitis, are these the only two or there are other ones?
Dr. Wallace Crandall: There are other ones too but those are the main ones and the ones that most people have heard about.
Dr. Mike Patrick: Sure. Now, I would assume that since Crohn's disease and ulcerative colitis are lumped in to one category called inflammatory disease, they must have some similarities and yet some differences as well since they're two different things. In what ways are these two diseases similar?
Dr. Wallace Crandall: Well, they're both similar in sort of the end result, meaning that you get inflammation. So you get stomachaches, you get diarrhea and bleeding and those types of things. So a lot of the symptoms are the same. They're different in a couple of ways. One is the type of inflammation that occurs and the other is what part of your intestines are affected. So ulcerative colitis affects just the large intestine, whereas Crohn's disease can affect the large intestine or the small intestine or really anywhere along your…
Dr. Mike Patrick: Sure. There's also a difference in sort of how deep that inflammation goes, whether it's superficial or deep, tell us about that difference.
Dr. Wallace Crandall: Exactly. So with ulcerative colitis it tends to just affect the inner lining of the intestine and Crohn's disease can affect all of the layers of the intestine so sort of the complete thickness of the intestine and that can lead to some complications that happen in Crohn's disease and don't happen in ulcerative colitis.
Dr. Mike Patrick: Sure. So Crohn's disease can happen anywhere from the mouth down to the anus and kind of in intermittent areas and it's a deep inflammation. Whereas ulcerative colitis is just the large intestine and to the anus and then that's the one that's more of a superficial.
Dr. Wallace Crandall: Exactly.
Dr. Mike Patrick: OK. I know we said that, I just like to kind of sum it up again because in parents' minds it can start to get a little bit confusing between these two.
Dr. Wallace Crandall: Absolutely.
Dr. Mike Patrick: So, it's fairly common. We mentioned that 1.5 million Americans are affected. Is there a difference between boys and girls?
Dr. Wallace Crandall: Yeah. It's roughly the same between boys and girls. There are some small differences that we see but nothing really remarkable.
Dr. Mike Patrick: Sure. What about the age of onset? Is this something that kids have immediately from birth or is this something that develops later and how much later?
Dr. Wallace Crandall: Yeah. For most individuals that shows up in teenagers or young adult years, sometimes in older adults as well. There are some sub types of Crohn's and colitis that show up in infants even. So it can affect the whole spectrum, but usually we think about teenagers and young adults.
Dr. Mike Patrick: Because that's when you start to see the problems. What about with ethnic groups, do you see it more commonly in one ethnic group compared to another?
Dr. Wallace Crandall: Yeah. Specifically in Ashkenazi Jews, we tend to see Crohn's disease at a higher rate. It's sort of the big one that stands out.
Dr. Mike Patrick: But really you can't see it in any ethnic group.
Dr. Wallace Crandall: You can't see it in any ethnic group.
Dr. Mike Patrick: What about with regard to family history? If you have a family history of someone with Crohn's disease or ulcerative colitis, are you then more at risk for developing it?
Dr. Wallace Crandall: You are but it's not like you think about cystic fibrosis you get a gene from mom, you get a gene from dad and you're going to get cystic fibrosis. With Crohn's disease you can get genes that predispose you to it so it makes a little bit more likely but it doesn't necessarily mean that you will develop Crohn's or colities.
Dr. Mike Patrick: Sure.
Dr. Wallace Crandall: So we usually think 10-15% kind of range for first degree relatives.
Dr. Mike Patrick: Yeah. I would think that too with it be in sort of a lower association that it makes it hard to tell is this really genetic or is there something in the environment that it might run in the family because the family's is in the same environment. Is there environmental issue in addition to genetics or no?
Dr. Wallace Crandall: Probably both. And there's probably some difference between Crohn's and colitis. So they've done studies in twins where you can sort out some of that and clearly there's a genetic component and probably a greater genetic component in Crohn's disease than ulcerative colitis.
Dr. Mike Patrick: Sure.
Dr. Wallace Crandall: But environment clearly plays a role as well.
Dr. Mike Patrick: I've also read some things on the Internet, which you can't always trust, that would suggest that maybe there's a higher risk if you live in an industrialized country or in urban area and maybe northern climates are affected a little more than southern climates. Is that a real association or is it just if you're in an industrialized country or city maybe you're more likely to be diagnosed because you have different medical care?
Dr. Wallace Crandall: So there probably really is a difference, so there's a lot of countries where inflammatory bowel disease uncommon at all. And one of the theories about inflammatory bowel disease and nobody knows for sure is this sort of hygiene hypothesis and what people mean by that is if you grow up in an area that's so clean that you don't get expose to as much stuff, bacteria and parasites and other things as you're growing up, that your immune system doesn't become tolerant of all of those things. So your immune system since you're not tolerant of those things can sort of overreact to the normal things that would be in your environment.
Dr. Mike Patrick: Sure. That's kind of been postulated with regards to asthma as well.
Dr. Wallace Crandall: Asthma, allergies and a lot of things.
Dr. Mike Patrick: Sure. So, when we boil it down, what exactly causes inflammatory bowel disease?
Dr. Wallace Crandall: A great question. The short answer is nobody really knows. If you would have asked that question 10 years ago, there was one gene that had been identified that increased the risk for having a Crohn's disease. Now there's over a hundred genes that have been identified that increase the risk to some degree.
Dr. Mike Patrick: Wow!
Dr. Wallace Crandall: And a lot of where that risk seems to be is in the genes that control the immune system. So what we think happens with these diseases is the immune system overreacts to normal bacteria or normal things within the intestine. So instead of having this nice controlled reaction, your body sees things that are not supposed to be there and will perpetually try to fight them off.
Dr. Mike Patrick: Great. And those things could be something in the environment that could be viruses, could be…
Dr. Wallace Crandall: Viruses, bacteria, parasites, antibiotics.
Dr. Mike Patrick: Sure.
Dr. Wallace Crandall: Anti-inflammatories, things like that.
Dr. Mike Patrick: Great. So you have the trigger but whether you then respond in such a way kind of depends on your body's immune system and your genetics and so it's very, very complicated.
Dr. Wallace Crandall: And probably the timing of when things happen and in what combination they happen, all of those things.
Dr. Mike Patrick: So, let's say regardless of exactly how it happens, it does happen, and someone, a teenager now has a new onset of either Crohn's disease or ulcerative colitis, kind of step us through for each of the diseases what you would typically see at presentation? Sort of what kind of signs and symptoms would be there?
Dr. Wallace Crandall: So for ulcerative colitis, you would typically see abdominal pain. You typically would see diarrhea and that would usually have blood with it. So that would be very common. A lot of kids will also get tenesmus, which is a feeling of having urgency to go to the bathroom, but not necessarily doing very much when they try. So they feel like they need to run to the bathroom but they may sit there and just continue to feel like something needs to happen when it doesn't.
Dr. Mike Patrick: Right. The blood in the stool, would that be something that would definitely be seen or could it just be microscopic?
Dr. Wallace Crandall: It can be microscopic. For ulcerative colitis, you're more likely to see it. For Crohn's disease, it's a little bit different and may just be microscopic. You may never know that the blood is happening.
Dr. Mike Patrick: And that I supposed would be because Crohn's diseases can be sort of higher up in the intestinal tract.
Dr. Wallace Crandall: Exactly.
Dr. Mike Patrick: And ulcerative colitis lower.
Dr. Wallace Crandall: Yeah. So ulcerative colitis is down at the end of the colon and so if you have a blood that's happening there then you typically see that blood coming out in your stool.
Dr. Mike Patrick: Sure.
Dr. Wallace Crandall: But with Crohn's disease, if you have for example, just the very end of your small intestine that's affected then that blood may get hidden as it goes to the rest of the colon and you may never know that it's there.
Dr. Mike Patrick: Sure. What about constitutional symptoms? Again, let's kind of just focus on Crohn's disease. So you've got the diarrhea, abdominal pain, possibly blood in the stool, what other kind of symptoms, do you see fevers, loss of appetite, those kind of things?
Dr. Wallace Crandall: Yeah. We see that more with Crohn's disease than we do with ulcerative colitis. So with Crohn's disease, you'll often see growth issues, kids will often lose weight, they may not be growing appropriately. They may not be maturing sexually the way that you would expect. Fatigue is a very common kind of thing and maybe one of their biggest symptoms and often one of the last things to get better as we're treating them.
They may have fevers that sort of don't go along with having infections or anything, just kind of the sporadic fevers that are occurring. And sometimes they'll even get problems with their skin, like the skin right around the anus. For example, they can get skin tags or deep fissures, sometimes even what we call fistula, which are little areas that start draining.
Dr. Mike Patrick: Great.
Dr. Wallace Crandall: So there's a lot of different things that you can see. And occasionally even rashes and things will show up as being symptoms.
Dr. Mike Patrick: So it sounds like there could be inflammation happening in other places as well. So if you see rashes, the skin is involved, I mean are there other organ systems that can be involved with Crohn's disease other than just the GI tract?
Dr. Wallace Crandall: Yeah. So your eyes can be affected, your liver can be affected, your skin can be affected. You can certainly see other things.
Dr. Mike Patrick: Is that true with ulcerative colitis as well?
Dr. Wallace Crandall: It is.
Dr. Mike Patrick: So with both of those. So the antibodies that we think are causing the inflammation are not just limited to the GI tract, although that's where it is primarily.
Dr. Wallace Crandall: Correct.
Dr. Mike Patrick: Yup. Now, with ulcerative colitis, are there any other symptoms that go along with that one in particular?
Dr. Wallace Crandall: Well, the other things that I mentioned you can see. But with ulcerative colitis, the big things that you think about are the pain and bloody diarrhea and tenesmus.
Dr. Mike Patrick: So in terms of when kids show up with it it's a little more dramatic, I would suspect?
Dr. Wallace Crandall: It's more dramatic in the sense that you know blood is always a scary thing when you see them. Sometimes with the Crohn's disease they'll come in just being very, very malnourished and since they don't have a lot of intestinal symptoms there's a lot of fear that it could be cancer or something else going on. So Crohn's can be dramatic in that sense.
Dr. Mike Patrick: Sure. Especially if there's a lot of weight loss.
Dr. Wallace Crandall: A lot of weight loss.
Dr. Mike Patrick: What other diseases, because these are kind of general symptoms that we've talked about, I suspect that there are a lot of parents out there who may be thinking my kid doesn't eat really well, maybe they've not loss a lot of weight but they are not really gaining weight as much as I would like and they complain of a belly ache frequently and there's certainly of benign things that can cause those set of symptoms as well. Obviously, when there's a lot of blood in the stool it's a little bit different. But what other things could cause that set of symptoms?
Dr. Wallace Crandall: Yeah. So there's a lot of different things that can cause that. Like you say, most of the time when kids are having these kinds of symptoms it is benign. What we typically think about are the irritable bowel syndrome types of things and people often confuse inflammatory bowel disease in irritable bowel syndrome because they sound a lot alike but they're different causes.
With irritable bowel syndrome that has more to do with the way that the nerves of the intestines sense things but there's not a lot of inflammation going on on the inside. So with irritable bowel you don't have to worry about sort of a damaged component that you would sometimes see with inflammatory bowel disease.
Dr. Mike Patrick: Right. What about infections in the GI tract that could cause blood in the stool and abdominal pain and cramping kind of stuff.
Dr. Wallace Crandall: So if the symptoms are sort of short lived, meaning a week or two, then we would think more about infectious types of things and your doctor will usually check for those things, salmonella, shigella, those types of bacteria. Sometimes giardia, so is some of the parasites that you can pick up, they don't give you the bleeding but they can certainly give you the other symptoms.
Dr. Mike Patrick: Right.
Dr. Wallace Crandall: So for the first step is usually looking for those things but once you start getting more than a couple of weeks, three weeks into it, then you start saying well that's kind of a long time to say that this is an infection.
Dr. Mike Patrick: Let's say you do have symptoms that are lasting for that period of time, how do you go about diagnosing inflammatory bowel disease? How do you arrive at the diagnosis for the family?
Dr. Wallace Crandall: So unfortunately there's not one single test that gives you the answer necessarily, so it's a combination of things. So we look at what the symptoms are, there are some stools tests as I mentioned to make sure that there's not an infection going on. And then we will do some blood test, typically. And the blood test will check the blood count to make sure that it's not low, for example, we talked about having blood loss that may be we don't know about.
Dr. Mike Patrick: Right. That can lead to anemia.
Dr. Wallace Crandall: That can lead to anemia. There's test that look for inflammation in the body called the sed rate and the CRP. So we will often check one or both of those tests. We'll often check the liver to make sure that's OK, both because occasionally inflammatory bowel disease can affect the liver but also some of the medicines that we use can sometimes affect the liver so we'd like to know that it's healthy at baseline.
And then once we sort of go through those things, then it's usually some radiology testing and endoscopy testing. So with the radiology testing we need some way of looking at the small intestine. So the small intestine we don't reach very well with the scopes and it's about 20 feet long so it's hard to get a good picture of it.
Dr. Mike Patrick: Right.
Dr. Wallace Crandall: So we either have them do a test called the small bowel series where they drink some barium or we have them drink a liquid that's not a barium that shows up on MRI or a CAT scan, so we'll do an MRI or a CAT scan. And then the endoscopy, we typically would do an upper endoscopy where we look in their mouth. We look at the esophagus, the stomach and the very first part of the small intestine, just a couple of inches in. And then a colonoscopy where we can look all the way around the colon and usually the last couple of inches of the small intestine.
Dr. Mike Patrick: Right. What about the capsule endoscopy? Explain what that is and is it something that's helpful with this particular diagnosis?
Dr. Wallace Crandall: Yeah. So capsule endoscopy is some sort of very exciting technology. It's basically the size of a large multivitamin and people can swallow it or we can use the scopes to put it in to the stomach or into the small intestine. And then it just sits and takes pictures all the way through the small intestine. So it takes pictures for about eight hours and it makes a little video of your small intestine and then we can sit down and review, thankfully we can review it faster than the eight hours that it takes to take the video and it will give us some pictures of sort of exactly what are those inside of the intestine. We can do biopsies with it though and biopsy is an important part of diagnosing Crohn's and colitis. So it doesn't sort of replace having an endoscopy.
Dr. Mike Patrick: I guess it may be helpful especially like with Crohn's disease if it's just a small segment that maybe affected so you can get pictures in a non-invasive way but once you find that then you got to go in and do the biopsy.
Dr. Wallace Crandall: Yeah. Typically, the endoscopy would happen before the PillCam and the PillCam would be, if we were trying to clarify an issue in particular.
Dr. Mike Patrick: Got you. Then the pill comes out the other end I would suspect.
Dr. Wallace Crandall: The pill comes out the other end and you don't need to retrieve it or anything.
Dr. Mike Patrick: Right. Right. It's a disposable one-time use camera.
Dr. Wallace Crandall: It's a disposable one-time use.
Dr. Mike Patrick: Now, let's say you've done the blood tests, you've done the imaging, the stool studies and the endoscopy then you arrive at the diagnosis of either Crohn's disease or ulcerative colitis based on all the information that you have. So then how do go about treating these diseases?
Dr. Wallace Crandall: Yeah. It depends a little bit on sort of the severity of the disease. We don't have any test to say for sure how people are going to do long-term because it's different for everyone. But we have some things that give us a hint on whether it may be a more severe kind of a course or a more mild kind of a course. And so we would select the medications based on sort of what we think is likely to happen down the road.
So for ulcerative colitis sometimes we can get away with using sort of very mild types of medications as a first step and just seeing if that will work. With Crohn's disease the trend among experts team treating Crohn's disease is actually to be more aggressive in the beginning because there some thought that if you can do a good job controlling inflammation upfront, not only will you make them feel better then, but you may actually change the course of things over time. So you may actually make them better than they would have in a year or two.
Dr. Mike Patrick: So some of these medicines would work at decreasing the amount of inflammation that's there. So the immune system is still having a reaction but what you see at the cellular lever you're kind of trying to blunt. Is that a fair assessment?
Dr. Wallace Crandall: Yeah. So the most mild medicines are sort of topical anti-inflammatories. So you can take them by pills or you can take them by enema. And they came to cope things and just work locally there to try and decrease the inflammation.
Dr. Mike Patrick: Right.
Dr. Wallace Crandall: Others are medicines that sort of circulate throughout your body and decrease your immune system sort of everywhere in your body. And they don't sort of target just the intestine. There is actually a new medication that is in testing right now and will probably be coming out that is able to suppress the immune system like the more potent medications do, but we're able to target it just to the intestine.
Dr. Mike Patrick: Oh, very nice.
Dr. Wallace Crandall: Yeah.
Dr. Mike Patrick: And that decreases then we're going to sort of get to some of the risks or complications associated with the disease, itself, and with the treatment as well, so we have to kind of keep that in mind as we get further along and talk about that. So if anti-inflammatory agents have immune system suppressors, what other kind of medicines like laxatives, pain reliever, I mean there are lots of other things that would go along that you sort of have in your arsenal to help with the symptoms of these things. Talk about some of those.
Dr. Wallace Crandall: Yeah. So laxatives we don't usually use simply because diarrhea is usually the problem. But if people have narrowed areas where we're trying to make sure that things stay kind of loose so that nothing gets caught up in those narrowed areas, sometimes we'll use laxatives for them. There are anti-diarrheal medicines sometimes we use, although we're trying to avoid those because the feeling is that those sort of hiding the symptoms rather than addressing the symptoms. We try not to do a lot of them. Occasionally, dietary changes, although most of the time people don't need to change their diet unless there's something that's sort of specific to them that sort of bothers them.
Dr. Mike Patrick: Yeah. What about vitamin B12? Is that one in particular for Crohn's disease that you might have to use?
Dr. Wallace Crandall: So, theoretically, absolutely. Vitamin B12 is sort of the end of the intestine where it gets absorbed, the end of the small intestine and that's the most common place for Crohn's disease. So it's something that we have to think about and keep an eye on, but in reality we have a very few patients who ever have problems with their B12.
Dr. Mike Patrick: Great. And what about surgical treatment then? Is there a time when you've kind of maxed out what the medications can do and you have to go that route?
Dr. Wallace Crandall: Yeah. And there are probably different instances between ulcerative colitis and Crohn's disease. So for ulcerative colitis if you take the colon out, in a sense you've sort of cured the ulcerative colitis because it doesn't come back any place else, but there are always risks of having surgery and complications by having surgery but in a sense you're curing it. So if people aren't responding well to medications then that's clearly an option. And when people have that option they will often temporarily have the ostomy bag but that's not something that they need to have long-term, that's a temporary solution.
With Crohn's disease, because surgery doesn't cure things then we're a little bit more careful about when we do surgery. For surgery we would usually be trying to take care of specific complications, so if there's a narrowed area there are ways that we can expand that or we can just remove that narrowed area, for example.
Dr. Mike Patrick: It really sounds like for both of these diseases is not a cookbook approach to what you do. You got to take each kid individually and see what exact problems they're having and kind of tailor their treatment to that child.
Dr. Wallace Crandall: Yeah. I think that's true. I think there's sort of a handful of different pathways that you probably would choose for each child.
Dr. Mike Patrick: So talk a little bit about the complications that can arise from the disease itself. Why is it important to treat this, obviously to eliminate the symptoms and have a more comfortable life, but with not treating it are there other more serious things that can happen?
Dr. Wallace Crandall: Yeah. With Crohn's disease that chronic inflammation can lead to what we call strictures, which are narrowed areas of the intestine. And if an area becomes too narrow then it can become blocked and that can become an emergency if your intestines blocked. So we certainly don't want to see people progressing to that point.
Dr. Mike Patrick: Right.
Dr. Wallace Crandall: You can get pretty bad malnutrition if you don't control the Crohn's disease. Your small intestine does a lot of your nutrient absorption and so if you have a lot of inflammation you don't absorb nutrients very well and you may not use the nutrients that you do absorb very well. So that can be a big deal. Sometimes people will get a whole in their intestine that will sort of cause infection to leak out into their abdomen and form an abscess and so that would be something that might require surgery but at least would require being in the hospital for antibiotics and things.
Dr. Mike Patrick: So these are all good reasons to keep it under control.
Dr. Wallace Crandall: They're all good reasons to keep it under control.
Dr. Mike Patrick: Yeah.
Dr. Wallace Crandall: And there's a little bit of increase risk of cancer with these things and the risk is probably greater in people that have a lot inflammation than in people who have little inflammation.
Dr. Mike Patrick: Sure.
Dr. Wallace Crandall: So another reason to kind of keep things under control.
Dr. Mike Patrick: I guess that's part of the long-term management too is cancer surveillance. Is that in particular of the large intestine that you see or can it be anywhere in the GI tract?
Dr. Wallace Crandall: It's predominantly the large intestine that you're thinking about, sort of the traditional colon cancer that you think about in adults. And so what we typically say is eight to ten years after being diagnosed then at that point every one or two years we'd recommend having a colonoscopy done. I think those recommendations may actually change a little bit over the next few years because we probably need to not treat everybody exactly the same way. People who've had very little inflammation or have been in remission for prolonged periods of time probably don't have as much risk and maybe don't need to have a colonoscopy quite as often.
Dr. Mike Patrick: Sure. Now we talked and I'd kind of alluded to this, with our show we've always talked OK, here's how you treat it but we always want to look at risk versus benefit at anything that we're deciding. So what are some of the potential complications from the treatment of these diseases?
Dr. Wallace Crandall: Yeah. The stronger medicines that suppress the immune system are the ones that you would worry a little bit more about. And the things that we usually talk about because they suppress the immune system that puts at risk for infections. Most people if they have an increased risk of infection, the mild everyday colds and flu kinds of things just like everybody else gets, but occasionally they can get more of severe types of infections. We just need to pay a little bit more attention when somebody is sick.
Dr. Mike Patrick: And that's kind of the exciting thing if you have an immune system suppressor that's really just aimed at the GI tract and not the body as a whole.
Dr. Wallace Crandall: Exactly. Exactly. Occasionally, the medicines will make your pancreas sore, which causes something called pancreatitis. There's a couple of different medicines that sometimes do that, they don't usually but they can. The medicines will occasionally affect your liver, as I mentioned before, that we usually try and make sure that the liver enzymes are normal before we ever get started. And then that's something that keep an eye on pre-regularly.
And the scariest sounding thing is some of the medicines increase lymphoma risk a little bit, lymphanode cancer. If you sort of just take anybody off the street, you just sort of grab somebody and say OK, what's their risk of getting lymphoma, it's about two in 10,000. They types of medicines that we use increase that risk to about six in 10,000.
Dr. Mike Patrick: So it's a small increase but it's still a low relative risk.
Dr. Wallace Crandall: Exactly.
Dr. Mike Patrick: Describe what the long-term outlook is for kids and teenagers that would be diagnosed with inflammatory bowel disease. Lifespan, is it lessened? Is it something that gets better overtime or worse overtime? What sort of the long-term outlook?
Dr. Wallace Crandall: Yes. So for people who take care of themselves, the outlook is pretty good. If you look at all of our patients at any given time, about 80% of them are in complete remission and most of the rest of that 20% have very mild symptoms. So they're doing pretty well. We sort of tell everybody that they shouldn't change what you want to do with your career, with your family, any of those kinds of things. It just means that they need to be a little bit smarter than the other kids about taking care of themselves and being a little bit more responsible.
Dr. Mike Patrick: Sure. Is there any way to prevent inflammatory bowel disease?
Dr. Wallace Crandall: Not that we know of at this point. There's a very interesting study that people are doing looking at siblings of kids who have inflammatory bowel disease and looking to see if they can predict who's going to develop it. But right now we just don't have that information.
Dr. Mike Patrick: You'd mentioned that you could potentially cure ulcerative colitis if you remove the entire large intestine because it only affects the large intestine. What kind of complications or issues are there if you take out the whole large intestine?
Dr. Wallace Crandall: So, it's not something that you need to live but it's certainly something that's nice to have. The main job of your large intestine is to suck out the salt and water, so if you don't have that then you don't suck out the salt and water and so you have an increase of those things. So you tend to get more diarrhea, you may have some incontinence problems especially at night. Patients who have that surgery where they take out the colon and then they make a little pouch out of the end of the small intestine, the diarrhea, the incontinence, those types of issues tend to get better overtime. So right after surgery they may have bowel movements seven or eight or ten times a day, but a year after surgery it may be three or four times a day.
Dr. Mike Patrick: Is there any way that you foresee in the future being able to cure these diseases in a non-surgical way?
Dr. Wallace Crandall: I hope so. That's certainly the goal and there's a ton of research going on around specifically what causes Crohn's and what causes colitis and how you might be able to intervene. I think and to be honest that true cure is probably pretty distant in the horizon but better treatment I think is happening all the time. I think as we understand, we talk about Crohn's disease like it's one thing or ulcerative colitis like it's one thing, but it's probably 12 different types of Crohn's disease or 20 different types of Crohn's disease or whatever. And so as we're able to better specify what type of Crohn's disease somebody has then we can better target treatment for those individuals.
Dr. Mike Patrick: Sure. Speaking of treatment, I want to talk a little bit about the inflammatory bowel disease program here at Nationwide Children's Hospital. It's really a multidisciplinary clinic. Tell us what that means.
Dr. Wallace Crandall: So that means we have lots of people involved. We don't think that there's any one person that's going to have, we're going to be able to provide everything that our patients need. So we have, for example, a nurse coordinator for the program. One of the unique things about what she does, for example, in our program is when somebody is newly diagnosed we actually bring the patient and their family in for a half day teaching session with her and with her dietitian who's part of that multidisciplinary team. So they get a pretty intensive amount of instruction in the beginning about how to deal with this.
We actually wrote a handbook to teach people how to take care of themselves and so that's part of that initial teaching and starting to go through that with them and teach them how to do that. We have a nurse practitioner that works with me very closely, who works not only in the out-patient side but if our patient get admitted to the surgery she'll be able to find out about that and see if those patients are OK in the hospital as well. Dietitian who's part of the team, a psychologist who's part of the team. Sometimes it's hard to sort of deal with all of these happening all at once.
Dr. Mike Patrick: Absolutely.
Dr. Wallace Crandall: Social workers, so on and so on. Pretty comprehensive team of people trying to help.
Dr. Mike Patrick: Sure. And I would assume that you see kids from far and wide and not just here in Central Ohio as a tertiary care pediatric hospital that we are. So if folks want referrals, we'll put a link in the Show Notes to the Inflammatory Bowel Disease Program and then folks and physicians could get in touch with you guys, I would assume, through that mechanism.
Dr. Wallace Crandall: Absolutely.
Dr. Mike Patrick: Great. We'd mentioned in the bio that you're involved with the ImproveCareNow network, what is that?
Dr. Wallace Crandall: ImproveCareNow is a multicenter collaborative. So it's about 30 IBD centers across the country, actually a little bit more than that now, that are working together to try and improve outcomes. So if one site sort of learns to do something really, really well, instead of everybody else trying to reinvent the wheel, that's shared freely between the groups. I know that hospitals and hospital systems compete on different things but we shouldn't be competing on taking the best care we can.
Dr. Mike Patrick: Yeah. Absolutely. That's great. That's a great thing. So we'll put links in the Show Notes again to the Inflammatory Bowel Disease Program here at Nationwide Children's, also the ImproveCareNow network and there's really lots of educational information and online support for inflammatory bowel disease, including the Crohn's and Colitis Foundation of America. There are various support groups that are available and we'll have some links to some of those in the Show Notes for you.
Dr. Wallace Crandall: Right.
Dr. Mike Patrick: Great. Of course we'll also have links to the Nationwide Children's Hospital grand opening page and the Wishing Tree Project as I mentioned at the beginning of this show. All right. We appreciate you stopping by but before you go, one of the things that we ask all of our guests here on PediaCast is just what's your favorite family game or activity? We're trying to encourage families to do things that don't always involve the screen and so what are some of the things in your family that you guys enjoy doing?
Dr. Wallace Crandall: Well, we…
Dr. Mike Patrick: Or did I ask you too fast?
Dr. Wallace Crandall: No. No. I was thinking sort of two different pathways. We do martial arts together and so that's not everybody in the family but a large part of our family does that. But the things where we're sitting around the house, there's a board game that we play that sort of a drawing competition but you're not judged on how well you draw, it's on other criteria, so it's fun for six year olds.
Dr. Mike Patrick: Oh sure. Yeah. What's the name of the game?
Dr. Wallace Crandall: That's what the part that I'm blank.
Dr. Mike Patrick: Oh, OK. All right. You can email me and let me know and we'll tell the folks, that sounds like fun. All right. We really appreciate Dr. Wallace Crandall for stopping by and talking to us. Also, thanks to all the listeners out there, we appreciate you taking time out of your day to make PediaCast a part of it. Also, I want to remind you that iTunes reviews are helpful as our links on your webpages and mentions in your blogs, on Facebook, in your tweets and on Google+.
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