Bowel Moments
Real talk about the realities of IBD...On the rocks! Hosts Robin and Alicia interview people living with Crohn's disease, ulcerative colitis, or indeterminate colitis (collectively knows as Inflammatory Bowel Diseases or IBD) and the medical providers who care for our community. Join us to meet people affected by IBD- we laugh, we cry, we learn new things, we hear inspiring stories, and we share a drink.
Bowel Moments
Pediatric Research Roundup with Dr. Jeremy Adler
The quest for better outcomes in pediatric IBD has taken significant strides forward, and Dr. Jeremy Adler returns to Bowel Moments to guide us through the most promising research developments of the past year. Dr. Adler is a clinical Professor in the Division of Pediatric Gastroenterology at the University of Michigan and serves as the Interim Director of the Susan B. Meister Child Health Evaluation and Research (CHEAR) Center.
We discuss how medication dosing strategies have evolved dramatically, with compelling evidence showing that body surface area measurements work better than traditional weight-based dosing for younger children. This seemingly simple adjustment yields dramatically better results, particularly as children grow and develop through puberty. Regular therapeutic drug monitoring—checking medication levels every 6-12 months or more frequently during growth spurts—has also proven critical for maintaining disease control in the pediatric population.
Prevention emerges as the cornerstone of Dr. Adler's research and clinical philosophy. The fascinating GEM study has identified changes in gut permeability that occur before IBD diagnosis, potentially opening doors to early intervention before symptoms appear. Meanwhile, Dr. Adler's own groundbreaking research demonstrates that early, aggressive treatment with anti-TNF medications can prevent serious complications like perianal fistulas, fistulas, and abscesses—complications that significantly impact quality of life and body image.
We navigate the complex terrain of treatment barriers, from insurance denials to psychological resistance to "stronger" medications. Dr. Adler challenges common misconceptions, noting that injectable or infusion medications often have better safety profiles than some oral options that patients perceive as "less intense." The conversation turns to normalizing surgical options like ostomies when needed, with Dr. Adler advocating for early introduction to surgical teams—not because surgery is imminent, but because establishing relationships reduces trauma if intervention becomes necessary.
With new medication mechanisms emerging and genetic markers helping to personalize treatment approaches, the research landscape offers real hope for children with IBD. Join us for this candid, informative discussion about protecting children from the worst outcomes of IBD through early intervention, personalized treatment, and collaborative care models that address both physical and mental wellbeing.
Links:
- Research article- Preventing Fistulas and Strictures Among Children with Crohn's Disease
- Journal Article referenced- National Perspectives of Barriers by Insurance and Pharmacy Benefits Managers in Pediatric Inflammatory Bowel Disease
- ImproveCareNow
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Hi, I'm Alicia and I'm Robin and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD Serve on the rocks. This week we bring back Dr Jeremy Adler. Dr Adler is a clinical professor in the Division of Pediatric Gastroenterology at the University of Michigan. He also serves as the interim director of the Susan B Meister Child Health Evaluation and Research Center. Dr Adler has a clinical and research interest in the care of children and adolescents with Crohn's and ulcerative colitis. His research focus is on improving short and long-term outcomes and health-related quality of life for children with IBD. He's been working on developing evidence-based strategies for preventing disease-related complications such as fistulas and pouchitis and to mitigate disparities among children with IBD. We talked to him all about the pediatric research that's been happening in the last year and what he's most hopeful and excited about, as well as many, many other things, and we think you're going to love Dr Adler just as much as we do, and he's welcome to come back anytime. Cheers.
Speaker 2:Hi everybody, Welcome to Bell.
Speaker 1:Moments. This is Robin. Hey everyone, this is Alicia and we are so excited to be joined once again by Dr Jeremy Adler. Jeremy, welcome to the show. How are you?
Speaker 3:Thank you very much. I'm well, thank you, and I'm really honored to be back. It was nice last time and thank you for putting up with me and asked me to come back again.
Speaker 1:You're easy to put up with. So, as I mentioned before, you are very welcome to come back anytime, but we are very excited to have you back to talk research with us, specifically this time. However, we always started out with our unprofessional question of what are you drinking? And since I can tell you're in the office, I'm guessing it's not alcoholic.
Speaker 3:It's not, and normally it would be coffee, but I have to say I'm drinking Dr Pepper.
Speaker 1:That is my treat that I allow myself, which is probably there's probably more than one, but I will only drink soda if I go on road trips. So if I am in the car for a prolonged period of time, I allow myself to get a fountain soda, and I am a big fan of getting a Diet Dr Pepper.
Speaker 2:That's actually a good rule of thumb Alicia, I like that.
Speaker 1:Yeah, yeah, I try. I try to have discipline every once in a while. It's not always great, but this one I've done really well at Robin, what about you?
Speaker 2:I am drinking a Topo Chico sparkling water, raspberry with lemon today, and also regular water. You don't have to have a couple of kinds of water.
Speaker 1:Yes, yeah, no, you are a beverage goblin, I think is what you've described yourself as I am. I am drinking a Spindrift lime, so love a Spindrift. And then also I had an open bottle of Champs, so I decided, in honor of talking to you again, I will be drinking the rest of this champagne.
Speaker 3:Cheers.
Speaker 1:Cheers, cheers. Anyway, we're not here to talk about champagne. We're here to talk about research and children with inflammatory bowel disease. So next question for you is, jeremy, we would love to hear what is new in the IBD space, research-wise for kiddos.
Speaker 3:There's a lot of new research going on, a lot of exciting research in pediatrics and there's some in the adult world that's relevant to pediatrics, so I don't even know where to begin because there's so much of it. I guess, to start with, there's been a number of studies that have looked at different approaches to treatment of inflammatory policies. You know, in pediatrics we're limited because we only have a couple of drugs that are approved, you know infliximab and adalimumab, so we need to make the most of those medicines.
Speaker 3:We of course use the other medicines when we need them, but we have to start with the ones that are approved, and one of the problems that happens is kids' metabolism is not the same as adults, and particularly as they're growing and gaining weight and getting larger and going through puberty and everything. So we use for these medicines weight-based dosing.
Speaker 3:So milligrams per kilogram typically, and that's true for kids and adults. But there are some kids whose metabolism is different and out of proportion and the standard weight-based dosing just does not work. So there was a really nice study done out of the Toronto group that took a different approach to trying to dosing a couple of different medicines using body surface area, so measurement sort of more comprehensive measurement of body size and it actually works better for younger children than weight-based dosing. So I think that's really important because if we get the dosing right in the first place, the medicine is more likely to work and more likely to keep working. And we know from many, many studies that the first medicine you use is usually your best shot at getting things under control. And we know from other studies that the sooner you get the disease under control, the better the outcomes. So I think that's one of the really important studies this year by Stollard's group, toronto. The study was really nicely done and showed that if you alter the dosing so that you use body surface area instead of weight, the medicine's more effective and they showed it. There's actually a couple of different studies out of the same group that showed it for different medications in the younger kids, which is really important because we often are pushed to give standard dosing of five milligrams per kilogram per dose of infliximab, which is what the US Food and Drug Administration originally approved back in 1997 or 1998. And that dose is probably not enough for many people, even adults, but for younger children in particular it's woefully inadequate. And when you use too low a dose not only does the medicine not work, but you're also more likely to develop anti-drug antibodies, so where the immune system starts to attack the drug and then it really stops working. So I thought those were some really nice studies to help us do better with taking care of kids with these diseases.
Speaker 3:There's a couple others related not related, but in the same sort of topic area, if you want. So when we treat kids with these biologic medicines infliximab and adalimumab I alluded to it earlier that you want to get the dose right and the metabolism is different, we have to use different dosing. But also kids are growing, so it's totally a moving target. We're fortunate now that we can actually measure the level of the medicine in the bloodstream, the trough level of the medicine. There are now a couple of more papers in children and pediatrics to show that if you continue to measure that level on an ongoing basis, every so often, it gives you an opportunity to tweak the dose and be proactive about adjusting it before the kid outgrows the dose. And so, even though the adult guidelines say you never, you know, check the level once in the beginning. As long as someone is doing okay, you don't have to check it anymore.
Speaker 3:It doesn't really apply to kids, because kids are growing and, as we were saying before, you know, growing and going through puberty, the metabolism is changing and everything. So there's now a couple of more studies to support that we really should be checking drug levels in kids. Don't know how often. Every six to 12 months is probably right, and there is a forthcoming society position paper from NASPGAN, the North American Society for Pediatric GI, that's actually going to recommend that. So it'll be nice to have that document, but it's good to have some guidance, because we know that we need to check the levels more often. But how often do you have to check it? And having that documentation to show the insurance companies yes, this is actually appropriate is very helpful.
Speaker 3:I know this is maybe not the exciting kind of research that you might have wanted to hear about, but I think on a practical, day-to-day it really helps us taking better care of kids.
Speaker 1:This must be so difficult, though, because, like you said, kids are growing so fast, and the other thing is that these kids, before they're diagnosed, are typically smaller because they have been struggling with GI conditions and not getting the same nutrients, and so they're maybe didn't grow the way they would have if they didn't have inflammatory bowel disease. So is six months enough, like, or is it like, I wonder how if it should be even more regular, especially as kids are going into puberty and they're growing so quickly and in sort of spurts, like it feels like maybe it should be more often, just based on how fast kids are growing and changing.
Speaker 3:I don't know the answer to that question. I wish I did so. The standard of care right now is at the end of induction or during induction, which is the third dose or the fourth dose, which depend which drug might be anywhere up to 16 weeks after starting the medicine, it's standard to check a level somewhere in there and then after. That is the part that is really not clear. The best study that I'm aware of was by Dr Amit Asa's group in Israel where they actually randomized, you know, with full cooperation and you know parents, you know, and kids being willing to be part of this. They randomized kids with IBD on their standard therapy to get a level drawn with every single infusion of infliximab. Compared to now I'm blanking I think it was actually adalimumab, but it was frequently it was monthly levels compared to the kids who were just practicing routine care and the kids who had the regular level checks, they did so much better. There was like no comparison. The outcomes were better.
Speaker 3:So that really does beg the question should we actually be checking it that often? What I don't know is with how many of those checks did it wind up with a change in toast? I don't know the answer. They may have published that data. I should look for it. So I don't know the answer to how often, but I do know that we should be checking more often than we currently do. I personally think six months is probably reasonable, although if someone's not doing well or if they're growing really quickly, we probably should be checking more often. It's a good question. There's a lot of these types of questions that I think we I wish we knew the answer to, because we could do a better job of taking care of kids, and this is the stuff that I want to know as a physician taking care of kids, but this is also the stuff that I want to try to answer as a researcher to help taking care of kids.
Speaker 1:It's funny you say that because I'm like you know there's so much about treating kids with chronic illnesses that you're like you're already behind the data because they've already developed this for an adult and like, and you're kind of having to backtrack and rewind and sort of figure out, like retroactively, how does it work in kids? And I know one of the things that's come up in a conversation I had with another pediatric GI was basically like there isn't a lot of incentive for people to participate in clinical trials for drugs that have already come out for adults and that you're already using as pediatric GIs, and about, like, what's the incentive to get people to participate in clinical trials in order to get the data to be able to say, okay, this is how it works in kids. Is there a way to revamp that system instead?
Speaker 1:of clinical trials instead of going back to say, okay, we're going to do a clinical trial.
Speaker 3:Yeah, that system absolutely needs to be revamped. In the US, congress actually mandated that. I forgot what year it was. They said you know, if a drug company is going to do trials on adults and if there's a pediatric application, they have to do the trial in kids too. For the most part it doesn't happen, or they drag their feet. They submit the paperwork, they do the trial years later, when the drug's already available and we're already using it. It's not a functioning system right now. So there's a move to try and push this ahead. So NASP began the North American Society I mentioned before, and EASP again, which is the European Society, created a joint policy statement that's currently going through the approval process to actually make it very clear what the criteria should be for doing pediatric trials, to encourage them to be done earlier.
Speaker 3:But it's not just the fact that the drug companies don't do the trials early enough and they should do them earlier, but the other problem is there's all kinds of regulatory barriers. I don't actually mean it on the regulatory side, but there's plenty of barriers there. I actually mean like the regulations that require barriers in the trial, that are things in the trial that are barriers to families enrolling, like, for example, the FDA currently requires if you're going to do a trial of a drug for Crohn's or colitis, you have to do a colonoscopy at the beginning, a colonoscopy at a year and another one at 12 or 16 weeks, halfway in between or like in the beginning of the study. Like who wants their kid sedated an extra time if it's not actually medically necessary?
Speaker 3:Things like that that we're arguing that. That's really not helpful. It's not necessary for the study, so why require it? Placebos patients randomized to get a drug or get a placebo. Why would you want your kid to not be treated when they have a serious illness? Thankfully they finally allow studies without placebos, but there's still this washout period where you have to be off of all treatment for two months before you start the study. Drug that's just nonsensical.
Speaker 3:That's actually not the way we practice medicine, so why require it in a trial?
Speaker 3:There's all kinds of things like that that have to change and there is progress and there is effort to change all of that to make it easier to enroll in trials. And the other thing that I think is really encouraging is there's finally at least approval, if not yet action on this, both in the FDA the US Food and Drug Administration as well as in EMA the European Medicine Authority, I think on both sides to allow real-world data for approval, which means retrospective studies, data that's already been collected. And there's groups like the Imperial Canal Network that have been collecting data on tens of thousands of kids with IBD and you could use that data to show see we're already treating with these kids with this medicine and see it works on a certain proportion of kids. So I'm really actually encouraged that there's a group that's currently trying to get one of the medications approved through the FDA using data from Improve Care. Now I'm optimistic it might actually happen. So that would be very exciting to use existing data and we don't have to put kids through randomized trials with unnecessary procedures.
Speaker 1:I guess I'm thinking about the health equity implications of this as well, because, especially if we're talking about families that have to rely on Medicaid to treat their children with IBD, it seems like maybe perhaps commercial insurance might be a little bit more flexible, even though it's it has its own set of annoyances and problems. It might be slightly more flexible as it relates to allowing for off-label or sort of, you know, allowing kids to take it when it maybe doesn't have, you know, the kid's implication in it. Yet have you noticed is Is there a difference between Medicare Medicaid typically Medicaid with kids and commercial insurance as it relates to the ability to access these medicines?
Speaker 3:Yeah, it's interesting and actually not what you would expect. So until recently I found that Medicaid often is easier to get things approved, like easier to get drugs for kids where they're being used off-label. We still have to justify it, you know, like why do we want this off-label drug when there's other ones available? Oh, it's because we already tried them and they didn't work or had adverse reaction or whatever it was. But until recently it's actually been easier to get things approved in Medicaid than from many private commercial insurances. That's all changing and I know we weren't really going to talk politics but by cutting Medicaid at the federal level. That's going to be a humongous issue because for some reason I don't think it's well known that Medicaid funds half of all children's health care in the country and somehow it doesn't make it into the political discourse. But I don't know what's going to happen to all of these kids if they lose their health care and health insurance.
Speaker 2:I was just about to say the same thing. I thought we said we weren't going to talk politics, and then I was going to jump in and ask a question about that, because I was a single parent when my kids were little and I relied on LA CHIP, the state Medicaid, in order to get my kids treatment.
Speaker 3:So yeah, yeah, and the CHIP, the Child Health Plus, the Children's Special Health Care goes by different names in different states, but it not only helps families low-income families it also is the insurance for kids with chronic diseases, which is who we're talking about. So it's not a minor thing to cut it. I don't know what's going to happen. It's very concerning.
Speaker 1:No, and I do wonder if exactly like you just pointed out, Robin, because it goes by, it's very concerning lie on this, Even if you have commercial health insurance.
Speaker 1:I have people that I know that had good commercial health insurance, but they had a kid with a very expensive in one case a fatal disease, and so they relied on Medicaid as well as their commercial insurance to really make sure that they got the services they need in order to really take care of their daughter through her very short lifespan, but to the best of their absolute ability. And so it isn't just low income families, it's people, it's kids living with chronic illnesses. So I think people don't understand that, maybe just because of the, because we do it in weird ways and because it varies state to state. But I think a lot of people also don't understand that you know Medicaid is tied to states, so it has to do with your state you live in, and states get money from the federal government, but they also contribute their own funds to it, and so that's why it also can vary state to state.
Speaker 1:You know what's available to you as somebody who, as a specialist provider, sees kids come to you for second opinions, third opinions or sometimes just because you're the best person close, I'm sure you see kids from out of state. How does that change things? Do we want to go down this rabbit hole? I just realized I opened a huge.
Speaker 3:It does change things the state. There's not only differences state by state, but it's also hard to go across state lines. So in Ann Arbor here in Michigan, we live very close to the Ohio border. In fact there's good children's hospitals there. But there's people who live in Toledo, northern Ohio area where it's closer to come here than go there, but yet it's hard to get their insurance approved. Sometimes I'll see them and they'll approve the visit, but they won't approve the medication. There's all kinds of tricky bureaucracy and every single insurance is different and I have a very hard time keeping track of them. Not only is every insurance different, but they all keep changing, so it's very hard. And, speaking of social workers, I don't know how we could survive without social workers. They're so important to helping us do everything we do, because, I mean, I might know the medical stuff, but there's a lot of other stuff that is really beyond my expertise. It's very important.
Speaker 1:Well, that's why it's good to have a healthcare team that includes people like you, as well as all of the other wonderful people that help to make sure that people get treated Well. Gosh, okay, I think next time we see you we'll have a cocktail or a Coke and work on changing the healthcare system for the better, but I don't know that we'll be able to do that today. I don't think there's enough champagne in my fridge to do that.
Speaker 3:But there's still. You know, I think the research gives me hope that there's ways to improve things here and there. So back to the research question, but totally related. Brad Constant, who is a pediatric gastroenterologist in Colorado, has now done a series of studies looking at the impact of insurance delays and denials and they are really important studies just showing that this isn't without cost and they actually harm children and lead to worse disease outcomes. So he published a couple of studies this year. In thinking about this meeting, I was really thinking just about the research published this past year to try and stay focused. But anyway, I'm really encouraged that his papers are out there because now I can reference them when I'm arguing with insurance companies that really know you can't wait six months before starting this medicine. It needs to be started now. So it's very sobering to see the data, but very helpful to have the publication.
Speaker 1:I'm really glad they did that study, you know, because I know there's a number of folks that are particularly active on social media and in pointing out the times where the health insurance companies and what health insurance companies are being particularly recalcitrant in helping families. And I know another one is a friend of the show, Brad Pasternak, and he's also quite active on socials talking about like anytime his families are denied, like he's on there saying why is this being denied at you know, a name insurance company, and I think it's sad that that has to be the case, that, like people are getting so loud on socials because their families are not being served. But also, I think, like you said, being able to point back at this research and say, but this is the implication will be helpful not only for kids but also for adults. I mean, this is it's not like it's different in adults kids, like delaying treatment we know causes worse outcomes. Now we have this study to point to, so I think it's important.
Speaker 3:Yeah, brad Pasternak is really big in this field and actually he's the senior author on that paper, so the two brads together led the study, which is very nice and very helpful I think it's important. We need this information.
Speaker 2:Absolutely, Dr Adler. The last time we saw each other in person, which was Congress over a year ago I can't even believe I'm saying that it's been that long we were talking about prevention and you wanted to come back on the show to talk more about that, so can you share more about prevention and your thoughts on that and what the research says?
Speaker 3:Absolutely. Thank you. This is something that I'm very passionate about, I feel is really important. I mean, ultimately, what we would all love to do is prevent IBD from happening in the first place, and I would be happy to be out of this part of my job and do something else. I don't think we're there yet, but there is some really interesting data coming out about prevention.
Speaker 3:There's a long-term study called the GEM study it's an abbreviation G-E-M Genetics, environment and Microbiome and it's a multicenter study where they're taking the recruited families where one person has Crohn's disease and they're studying first-degree family members so siblings, children, parents of that person, you know collecting all that stuff and microbiome, genetics, environmental stuff, diet, all kinds of other things, and it's now been going on for several years. I don't even remember when it started, but the results are starting to trickle out and they're publishing more and more papers on it. And there's a really interesting paper where they looked at gut permeability, which is like the lining of our guts. Have all these cells that are interlocked like jigsaw puzzles that basically keep us inside ourselves and then allow the fluids and whatever out that needs to come out. And when we know this is a thing in Crohn's and colitis is, the gut barrier gets broken and it becomes leaky, and the term leaky gut has taken on a life of its own.
Speaker 3:But the reality is there is a leakiness to the gut when you have IBD, and what they've found is that you can actually detect. And so they follow these family members over time, expecting that some of them, being family members, will develop IBD. And then they're going back and looking at okay, what did we see ahead of time? And they found that you can actually see detect changes in gut permeability before the onset of IBD in people who are about to or going to develop it, which is fascinating. And this raises all kinds of questions about like, okay, if you can catch it early enough, can you treat it and turn off that process? I think this is so exciting. We're obviously not there yet where this is a practical reality, but it really gives me hope that someday we'll get there.
Speaker 3:So that's a very exciting finding that was just published this year. So that's the prevention of the disease itself, and there's been many other studies that have looked at. You know what are risk factors to develop for developing IBD related to diet and other. You know environmental exposures and I think the bottom line is we should all be eating healthy. You know Mediterranean diet not too much highly refined, highly processed foods and perhaps you know you know minimizing certain chemicals, but none of them, I think, have actually gotten this close to a targeted, both understanding and potential mechanism for how you could intervene. So I'm excited. So stay tuned for more data. I'm not part of the study. I just think it's a cool one and I really look forward to hearing more from that group.
Speaker 2:That is exciting, Like it's like you're watching the gut do its thing.
Speaker 3:I mean, how much more surveillance would we need.
Speaker 3:I don't know. So there was a study years ago. So using blood samples from military recruits. Are you familiar with ASCA and ANCA, those serologies that you might hear people check, and people with IBD? People have done all kinds of studies trying to see if it can like predict the disease severity and stuff like that, and it's really not particularly good at that. But those are like antibodies to like yeasts and other stuff in the gut that the immune system develops. But it turns out there was a study of military recruits where they did blood samples I don't remember what the frequency was yearly in these people in healthy, you know, young people in the military and then what they found. A similar thing is you could see these antibodies go up before they develop IBD. So like it's fascinating, there is stuff there, but the problem is that one wasn't quite specific enough to say yeah, this person will and this person won't. But this permeability thing makes me wonder if we're actually getting close. And then the big question comes okay, can you actually prevent it? I don't know.
Speaker 1:Yeah, that was going to be. My question is like okay, so say, we see somebody that has increased gut permeability and like is on the verge, do we throw some Remicade at them and see what happens? Or like, what do we do?
Speaker 3:I don't know the answer to that, but I guess that is the question, because so this gets to the other half of my interest in prevention and some of this is my research is I believe we all wanna improve people's long-term outcomes and quality of life and everything. I feel that one of the best ways of getting at that is to focus on preventing disease complications. You know fistulas, strictures, colectomy surgery. You know need for ostomies and all of those things. It feels like it's a tangible thing to talk with families about, like I want to prevent this from happening, but not only that, it's a measurable thing and a thing we can test.
Speaker 3:And so what I've been working on is studying strategies of preventing disease complications and what we found now in a series of several studies is that if you start treatment early, if you get the disease under control early, you can actually prevent perianal disease.
Speaker 3:You can prevent, you know, fistulas, abdominal abscesses. I think it's so important because some of those complications, you know there's varying degrees of severity, but some people have really miserable experiences with those complications and if we can prevent them from happening in the first place, that would be awesome. So that's what I found in my studies is that early treatment, particularly with anti-TNF medicines, can prevent perianal fistulas. And I mean you can sort of like extrapolate how early is early and perhaps if you start medicines even before the disease manifests itself you can prevent everything. I just don't know yet. There was an abstract at ECHO that did look at early introduction of therapy and I honestly I'm sorry, I apologize, I don't remember which therapy did people who had that gut primary thing and, like you know, it's an early study, but it looked encouraging. So I think we're going to have to keep an eye on that group and see what they learn and we can learn from them.
Speaker 2:In the work that you're doing in prevention of complications. What do you find is the biggest challenge to that? Do you think it's fear of side effects from the drugs? Do you think it's just not wanting to have to take medication and try to treat it? I'm using air quotes here, naturally.
Speaker 3:I think it's everything and everybody has a different take on all of this. I think for a lot of families, the fear of starting an immune suppressing drug is a huge obstacle to treatment. For other people that are on board, I want to get my kid better right now. Let's start the drug and then the insurance company doesn't let you.
Speaker 2:Right.
Speaker 3:There are many people who want to take the natural approach, you know. Unfortunately, the evidence we have for diet-based therapies is really not very strong. Now we need more studies. It's true the quality of evidence isn't as good as a randomized trial of drugs, but the best study out there the DYN-CD study that compared the CD-ED diet to the Mediterranean diet. It was actually a beautifully done randomized study of adults with Crohn's disease found no substantial difference between the two. So why use these difficult diets when healthy eating is just as good?
Speaker 3:But we know healthy eating alone doesn't stop these diseases. So as much as I personally would love to have a diet-based therapy for my disease and these diseases, there isn't one that's practical and effective and evidence-based. But you bring up a very important question, because the barriers to starting early therapy are multiple and many times it's. You know, I don't want to be on these medicines, I don't want my kid to be on these medicines, and I totally get that. But having done this now for a long time and this isn't just me, this is my colleagues and you know the whole IBD family there was a time when we didn't have any of these medicines and the outcomes were far worse. Yes, and so when you compare the risk of these medicines and nothing is without risk there are risks, but the risks of these medicines are so small compared to the risk of the disease. But I understand, not everyone wants to go there right away.
Speaker 2:I do too, but as someone who's lived with it for 25 years and has had multiple surgeries, and you know I just I want to get on my soapbox and scream as loud as I can like do what you can do now, because it's going to make it so much easier, because I I'm in a cliche analogy it's not a sprint, it's a marathon. I was talking to somebody the other day and I was like you know, this is never going to end, and I've already been here for 25 years. I was like you know, it's just never going to end.
Speaker 1:Yeah, that's so true, but it's also, I think, that makes it even more important to get the treatment right in the beginning, because if you get the disease under control in the beginning, the long-term outcomes are so much better and you don't have to struggle with all of these difficult things that can happen nipping it in the bud as quickly as possible, and that may mean feeling like you're going to 10 instead of starting at one and escalating up, but I do think even just the implications, like I don't know you're talking about you know fistulas and abscesses and all these things and especially for kiddos, like there should be something to be said to you about just the psychological impact of having to be like hospitalized multiple times, or especially if you're getting perianal fistulas, like the amount of touching that happens and people being in your business and all these things.
Speaker 1:Not that it's hard, easy for an adult to handle it either, but as a kid, just the like. You know there's so much at stake here, so it's like I don't know. If I was a parent, I think I'd want to be like yeah, throw everything at it as quickly as possible so that we don't have these implications later on, just because of all of the trauma, the potential for medical trauma as well as just physical trauma that can be happening.
Speaker 3:It's so true, and it's not just a physical discomfort thing. It affects your body image, your self image, everything. It's a huge issue. So I really think that that's true. We want to try and prevent these things as best as we can. Yeah, I think there's also many misperceptions of these medicines.
Speaker 3:You know people perceive an injectable medicine or an IV medicine of being stronger or riskier than an oral medicine, which you know. Maybe it used to be that way, but it's definitely not that way now. We know that infliximab, adalimumab, ustekinumab, rizinkinumab I don't know if I'm allowed to use brand names, but those are so this is like Remicade and Flektra, humira, adlima, stellera, skyrizzy. Those medicines have a much better safety profile than the JAK inhibitors, which is upetacidinib, rinvox or tofacidinib, zeljanz or Ozanod, which is Zeposia, which are all oral medicines and are much more immune suppressing than the injectable medicines. So I think we have to do a better job of communicating that and educating families, and because it's sometimes the fear factor overshadows the actual evidence.
Speaker 1:It kind of goes back to my comment about being bad at math, you know, like because there is that like one in a whatever chance that somebody could develop cancer from it. Like people don't have a really hard time understanding that concept. They just hear cancer and they go hang on a second. I think that is part of what does make some of these medications the injectables or infusions challenging for families is that so many people associate infusions or injections with chemotherapy and so it feels like this big escalation in treatment or like that you're jumping straight to something that's so bad. But it's just if you explain why, like these are biologics and they can't be taken through your mouth your gut, like, will destroy it that maybe people would better understand it. I don't know it, just I feel, like there's just education that could happen.
Speaker 3:Yeah, I think you're exactly right. I was looking for it. I may not find it fast enough, but we did a study years ago where we made this little grid of these you know like little people to show the level of risk, to compare side by side risks of different medications and the risk of the disease without the medications, which I thought this is the way to show it. I think we still need that, but I think we need to now update it with the new medicines. I'll find it and send it to you if I find it.
Speaker 1:Yeah, but I totally agree, I think you have people need to have that visual in order to help them understand it. Because, yeah, I mean, if like one leg of one dude at the bottom corner is like what is your risk quote unquote of getting cancer, then you know it does. It makes people feel a lot better, I think.
Speaker 3:Yeah, it's. I think we can do a better job of communicating and I think we've come a long way of communicating. And I think we've come a long way. I think we are better than we used to be, but I still think there's a lot of room for improvement. And the other thing is people seem to tend to gravitate towards these new medicines and I'm not saying they're bad medicines, there's a lot of good stuff out there but they've been around for two years. What's the long-term implications of that, where infliximab has been around for 25 years? Now that long 1998. Yeah, so we know very well the ins and outs of those medicines and the long-term risks because people have been on them for a decade plus. Anyway, the idea, I think, of prevention. I think there's two pieces of it the preventing the disease, which I'm optimistic someday we'll get to, and then preventing the disease complications, which I think we can do now. We just need to do a better job at communicating, getting past the insurance barriers and getting started on effective drugs early. But I can think of prevention.
Speaker 1:When you were talking about talking to families about prevention and trying to prevent stuff like abscesses and fistulas and, you know, unnecessary surgeries, things like that. One of the things that we've sort of we get on a soapbox about on this show is the fact that, like surgery is an option. For instance, you know that like that needs to perhaps be on the table a little bit faster, because I think it can be some of this, this thing that is like we're trying to prevent it. We're trying to prevent it, so it makes it feel like it's this really big bad thing. When you're talking to families about prevention or getting on top of this as quickly as possible, how do you balance talking about that in a way that provides the urgency that you want to getting these kids treated as quickly as possible, with also not making something like an ostomy or a surgery, something that's now the thing that shouldn't like, that should be prevented at all costs because it's bad, thus making it when it does happen, if for somebody making it a bigger deal, did that make sense?
Speaker 3:I just again, I was thinking while I was saying it, that not only made sense, but that is such an excellent question and that's the balancing and the nuance of, I think, a lot of the decision making. You know there's definitely time and place for surgery. There are times when surgery is absolutely the right thing. Sometimes it's not clear what's the right thing and surgery is a reasonable option. And then there's other times when the medications are totally worth pursuing because, you know, hopefully you can avoid surgery.
Speaker 3:I think of surgery like medicines. You know there's a risk and a benefit to everything that we do and like, even like a colectomy, which removing the colon, like if you have severe ulcerative colitis and it's not responding to medications, that is the treatment is removing the colon. Years ago we used to just expect that everyone was going to need to have their colon taken out because, well, one, we didn't have such effective medicines, but, two, there's that risk of colon cancer that comes up later on, and so it was just simply the expectation, and so it was just simply the expectation. I think we've gotten past that, to the point where I no longer say that, you know, it's an expectation that you're going to everybody's going to need a colectomy someday. I don't believe that anymore. But there's some people where you know either the medicines aren't working well, you know they're into multiple, or they're just miserable and they want to have the surgery and that's fine. But just like the medicine, that has risks of side effects small risks, but real risks. The surgery has risks and some people the wound doesn't heal well, they have complications from the surgery.
Speaker 3:And there's a significant number of people that for all the world they look like they have ulcerative colitis, they have their colectomy, they think I'm done, it's over, and then sometime later they find out they have Crohn's disease. It's more common than I think anybody wants to believe. The best data that I can find it's somewhere around 10 or 15% of people and it could be as much as 20%, which is a lot. So I don't think we can tell people have a colectomy, it's a cure, because maybe it will be, maybe it won't be, we don't know. This gets back to that whole prediction thing, like we're not really good at predicting. So some things work, we can, but there's lots of things that like yeah you know we can have a good guesstimate, but we don't have a perfect prediction.
Speaker 3:So I mean your question of when do you do surgery? How do you talk about surgery? I tend to bring it up very early because I want people to know it is one of the things that they may need someday. I want it to be just a natural part of the conversation. I don't want to say we're going to do everything we can do to prevent surgery. I also think, especially in the case of ulcerative colitis, but probably with other situations, it's really good to bring the surgeon in early. On the inpatient side we do this right away, naturally day one. But on the outpatient side I tend to refer people to the surgeons to meet them, to have the conversation with them. That doesn't mean you're going to have surgery now, but I want you to hear the pros and cons of the different options. And I'm lucky here because I have some excellent surgeons that I work with and I think it's really important on the medical side of things to have a good team. But when I have that conversation with people about surgery, it's not. I try to do it early because at that point it's not urgent and then it's just part of the conversation.
Speaker 3:But the other half of the question that you asked about is ostomies. Nobody wants an ostomy. That's just plain and simple. Nobody wants one. There are times when an ostomy is necessary to get things to heal right and when I talk with them about ostomies, it's usually as a helper. It's a temporary thing to try and help things heal. Unfortunately, the reality is sometimes it becomes a permanent thing and it's a very hard conversation to have with people. But I think it's a very hard conversation to have with people. But I think it's important to be transparent and talk about this as a possibility, you know, and not high likelihood, but a possibility. But that's one that's very upsetting, especially before you know what an ostomy is. It's a hard conversation to have.
Speaker 2:I absolutely love that you potentially send families to talk to the surgeons early. I did not have that luxury. Really, my first surgery, when I had my subtotal colectomy, did not have that luxury, and for my second surgery it was kind of rushed as well. I did get to meet the surgeon in advance, but I it was like a meeting to schedule the surgery. Basically it wasn't like a you know, let's explore our options. It was like this is your option and we're going to schedule the surgery. Basically it wasn't like a you know, let's explore our options. It was like this is your option and we're going to schedule the surgery.
Speaker 2:Recently and I've talked about this on the show I proactively told my GI hey, I don't know what's going on and I want to go talk to a surgeon. I want to go talk to a surgeon in advance. I want the surgeon to look at me, do an exam and tell me what he sees and what he thinks or he or she sees. You know what they think and then I'll come back to you and talk about what it is, because I didn't want to be in that situation again where I was having to emergently go and see a surgeon and it'd be somebody that I don't know.
Speaker 2:Yeah, it's much easier to have surgery with somebody that you know you've met before you've seen in the office.
Speaker 3:Exactly, I totally agree. So we started doing this years ago because I think there were two sides to the problem. One is it's very scary for the family to say you need surgery. Here comes a surgeon, we're doing this tomorrow, we're doing this today, but it turns out it's also upsetting to the surgeon and like to be put in that position of to have to rush in and say you kid needs surgery. I've never met you before, you don't know who I am, but I'm doing this. It puts the surgeon in a difficult position.
Speaker 3:So we realized that. I realized that a long time ago and so when I started working with the surgeon, so we got together as a group and we said you know, we got to change this. And so we made up our own protocol for ulcerative colitis and the protocol was day one you meet the surgeon, whether you need surgery or not. That way you've met them. So a few days later, whatever time period later, if medically things aren't going well or if you just choose to do surgery, then you've already had the start of the conversation. You've met them, and I think it's really.
Speaker 3:It's never easy when your kid is sick and in the hospital and might need surgery, but I think it makes that difficult situation a little less difficult.
Speaker 3:If you've already met these people, it's not a shock surprise. I'm sorry you had to go through that, but a lot of people go through that, and that's why we need to do stuff like this and that's why I think it's so important to collaborate and to talk, and I think we talked last time about the Improved Care Now Network. I'm sure you've spoken with other people about how good a group that is. It's collaborative. It's the parents, the kids, the physician, the GI docs, the kids, the physician, the GI docs, the nurses, the dieticians, the social workers, the psychologists, the surgeons too. We have surgeons that come to that meeting now as well and it's such a collaborative place where we talk about things like this, like how are we going to do this better? We don't have a cure, but we can do better at taking care of kids who have these diseases and we need something like that. Well, there's an attempt at something like that. We need something really like that in the adult world.
Speaker 1:Yes, well, in general there's so much about the pediatric system that is a best practice, I think, for healthcare. You know like the fact that a lot of times you know pediatric groups like yours, you know, have people that are integrated in, like social workers, integrated in dieticians, social workers, psychologists, that are just integrated into the care team and are just like introduced very quickly, whereas adult practices it's like it's very piecemeal, like you may have. You know somebody, rob is just shaking your head. She's like no, that doesn't happen.
Speaker 2:I mean, even if it's a, I mean it has to be probably like the university of Michigan or Mount Sinai or Cedar Sinaiai, where they have like the large systems. But otherwise it's like I have my GI and I'm going and finding my own therapist and my own IBD RD registered dietitian and my own like I'm creating my own team in and out of that system and hopefully they can all talk to each other. Yeah, it's.
Speaker 3:It's unfortunately not always that a good. You know, in pediatrics we don't also. We also don't always have that team and there's a lot of smaller places that don't really have the resources. But people really need the team to have good quality care.
Speaker 1:Well, that, and I've I've joked that we need to have child life specialists, but for adults, because you know they're so good about explaining things in a way that is understandable or, like you know, helping people calm down when they're in situations that are really stressful, and so I was like we need child life specialists.
Speaker 3:People are great, we totally need them for adults, you're right, but sort of related to that. Mental health is so important and there still remains a shortage and still remains a stigma and it's still a problem. And everybody needs mental health care, especially if you have a chronic disease, and it should just completely be part of routine care and it's unfortunately not still.
Speaker 1:No, a hundred percent agree with you as somebody who, as a social worker, I a hundred percent agree that everybody needs a mental health professional, whether you think you do or not. And, frankly, if you don't think you do, you probably need it more than the other person.
Speaker 3:Exactly. I think that's so true.
Speaker 1:Sadly, you might not know the answer to this question because this is going to be definitely a curveball question for you, but I'm curious what longitudinal research there is for outcomes for kids that have to have colectomies really early. What do we know about their prognosis and their lives long-term? Say, you had a colect and you're 10, and now you're 50. What does that look like, do we know?
Speaker 3:I don't know if we know. I do know that over time because there's some research in this area. I'm not aware of any research that looks 40 years later. I mean there's cross sectional studies that look at how long have you had your disease for. Okay, this is how you're doing, but actually following people over time you need. There's some really good research done in countries that have national healthcare, like Denmark, where they have records on everybody you know over many, many years. Or you know the province level data in Canada, or you know there's some places that have really long-term longitudinal data, but those studies usually aren't so granular.
Speaker 3:What we do know is over time, if you make a J pouch, which is after removing the colon, taking the small intestine and making this little pouch this reservoir that can hold the poop so you can hold it in that over time the J pouch can accommodate to its new role holding poop and it grows with the kid, it gets bigger with them. Sometimes it grows too much and then it gets too big and you get bacterial overgrowth. Yeah, it's odd, but most people you know over time that does continue to get better and the quality of life of kids who had collecting me years ago, is generally pretty good Not for everybody and there are some people who have, you know, ongoing problems with you know, not being able to tell the difference between gas and stool or, you know, fecal incontinence, particularly nighttime. That stuff for some people can persist, but I can't tell you how often, and then I'm a pediatrician so there's a limit to my knowledge.
Speaker 3:When you get into adulthood and pregnancy and stuff like that, I read the papers, I know some information about it, but I don't have actual experience taking care of adults through the entire life cycle. But I think that's a really important question because the medical world has a habit of talking about long-term outcomes as like one-year, three-year, five-year outcomes. These are chronic diseases, thankfully with a low mortality rate. So these kids are going to grow up to be adults and going to grow up to be old adults. And knowing what the long-term implications are of all of our decisions and all of our interventions I think is really, really important. Yeah, I don't know the answer to that. I wish I did.
Speaker 1:Well, and I'm curious about stuff. Like you know, talking about body size, if you're a little 10-year-old, where your ostomy is placed might be perfectly appropriate for you then. But where your ostomy is placed might be perfectly appropriate for you then. But what happens when you're now a six foot five adult man and you know? And then all of a sudden, where, where, does that, ask me, go? Do ostomies have a shelf life? Like, is it? Like your stoma is only good for a certain amount of time and then it needs to be redone? Like I boy, I have all these questions about ostomies and stomas. Now I'm sorry, like you're, I realize now you've got me so curious.
Speaker 3:No. So I know patients. I have patients who are, you know, in their early 20s and have had ostomy since they were infants. So, yeah, the ostomy can last for a long, long time. I don't know if there is such a thing as a shelf life, but as you grow and your body shape changes, I have seen kids, or maybe young adults, who did need to have their ostomy revised, which is another surgery, you know, because when you were young it was fine, but now it sits right at the you know, the crease there.
Speaker 3:Maybe the surgeons know more about that, maybe there is more literature on that than I'm aware of. But I do know people who have had ostomies for a long, long time and are, you know, you get used to it as part of life, yeah, but I don't know you know the decades long story. I can tell you stories, you know, of adult friends and family members who have, you know, who have lived with IBD for decades, but it's not something that I'm aware. That's much of the really long-term data, but we need it and I think that's a plug for the need for more high-quality research, because five-year outcomes are short-term outcomes when it comes to a long-term disease.
Speaker 1:And the older I get, the faster five years goes, that's for sure.
Speaker 2:For sure.
Speaker 1:Robin has bemoaned the fact that ostomy technology has not changed since her first ostomy, like 20 plus years ago. This is my thought Is there a way to implant and this might be like metal behind the ostomy, so that you have a magnet that attaches it instead of having to like use adherence? Because there's a lot of people that have that struggle with the like, you know, the adhesives that they go along with the ostomies and they get rashes and openings.
Speaker 3:So I don't know the answer to that. I think it's a really interesting question. There was something called a Coke pouch that they used to do years ago, which is a continent ostomy. So they somehow take the ilium and as it gets, as it goes to the skin, they did some sort of pleating or folding or whatever they did, and then you have to put a catheter through self-cast but through the ostomy to let the stool come out, which sounds like a great idea, and maybe it works for people who had ostomies for reasons other than IBD. But IBD tends to lead to inflammation and problems, which is why they don't do it very much anymore, Although there are a few adults out there who had a Coke pouch years ago and are doing fine.
Speaker 1:Is it Coke's like the Coke Brothers?
Speaker 3:K-O-C-K.
Speaker 1:Oh OK. I was like is this also where you you smuggle Coke? It's somebody's name, but anyway.
Speaker 3:I was at what conference was it? Nasp, again last year, and they have this like a shark tank come up with your great ideas thing. And there was a surgeon, Steve Moulton, who presented this idea of this new kind of ostomy that you could somehow like open and close.
Speaker 3:He had this device that he developed, which I thought, wow, that's so cool if it works, but it made me worry. The reason the Coke pouches are problematic is because if stool's not going through there, it's backing up and it triggers inflammation in the mucosa and I don't know that you're not going to wind up with that same exact problem. It was a cool idea. He had an animal model. It mechanically worked, but you need to see what happens when you start doing it in people with Crohn's or colitis or whatever it is. So it's a cool idea. I'm not a surgeon and I don't know all of the subtleties of the mechanics, but I like the idea.
Speaker 1:Listen, we'll keep workshopping this because I think we can get this. I am curious, just, jeremy, as you were perusing the last year's worth of research on pediatrics, is there any specific research that you're most excited about?
Speaker 3:Yeah, I think the things that I'm most hopeful about are maybe not yet realities. I think the things I'm most hopeful about is there's so and this is not pediatric research, of course, maybe it's a little pediatric is there's so many new drugs with different mechanisms of action, so if this one doesn't work you can try that one, and of course we always go to them in pediatrics even before they're approved. But there's so many that I'm getting hopeful that some of these kids that have really difficult to treat disease are going to have treatment that works. And I'm hopeful that that group is working on the policy statement to hopefully get the FDA to approve these drugs. You know that would be really, really valuable. And there was a study at ECHO that was of a new drug with a new mechanism of action which is a TL1A antagonist, which is a tumor TNF-like thing which is even more targeted than the anti-TNF drugs and in theory or at least so they say you know less side effects, which I think is. It's just exciting that there's so many different drugs out there. That it gives me hope that you know we're going to get better and better treating these kids.
Speaker 3:People talk about precision medicine. I think. Well, the term has been co-opted by the geneticists to say genetic answers everything, and I don't think we're there yet, but there's some new studies on a new genetic marker, hla-dqa105, which is. It was described by a British group a couple of years ago and ICN group just studied it in pediatrics and it works in pediatrics also and it's a marker of like risk for the anti-TNF drug not working or developing antiderive antibodies, and so that was just published. That was. A bunch of people in the Proof-Your-Noun Network, myself included, were part of that study.
Speaker 3:So I think it's encouraging that we have more drugs and we're getting better at figuring out how to use the drugs and, of course, my passion is can we use them then to prevent the bad outcomes? There's so much research out there. Every time, a year goes by and I reflect on what's been done. I get more and more encouraged that we really are making progress. You know, a year goes by and I reflect on what's been done. I get more and more encouraged that we really are making progress. And when you look backwards, we were in such a better place than we were 5, 10, 20 years ago. No cure yet, but we're getting there.
Speaker 1:That's very cool. I mean, there's definitely. It's interesting to hear about those new things, that they're either new mechanisms of action, like you said, or sort of you know, looking at these genetic markers. That's so exciting to kind of feel like we have more options, different options, especially, like you said, if there's some drugs that, like you have the genetic marker that shows you're not going to respond to it, that you have other options right away. So that's super cool.
Speaker 2:What is the research that you're most excited to see come to fruition? And you are.
Speaker 3:I know you've already said it, but just like a little recap for everybody, yeah, I think the thing that makes me most excited is if we can get better at finding the right medicine and starting it right away or soon enough that we can prevent all the badness that can happen and people can have a normal life and they just have to take a medicine. I'm excited that we are getting closer to that. We're not obviously there yet, but I feel hopeful that we are on the right track.
Speaker 2:I'm excited about that too. It'd be lovely to be able to do that.
Speaker 3:Because I think that's the way to improve quality of life and long-term outcomes.
Speaker 1:For sure, 100%. Well, jeremy, thank you so much for coming on the show. I will reiterate again that you are always welcome to be a guest any, any time. Thank you so much for sharing some time with us today and thank you so much for sharing your expertise with us as well. Thank you, everybody else, for listening and cheers. Thank you.
Speaker 3:This was a lot of fun. I really appreciate it. Thank you.
Speaker 1:If you liked this episode, please rate, review, subscribe and, even better, share it with your friends. Cheers.
