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
The IBD Research Rundown with Dr. Victor Chedid and Dr. Iris Wang
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A lot of IBD news sounds like it should change your care tomorrow and then… nothing changes at your next appointment. We wanted to close that gap, so we invited back Dr. Victor Chedid and Dr. Iris Wang from Mayo Clinic in Rochester, MN for a Research Rroundup that’s honest about what’s exciting, what’s early, and what still has major caveats for real people living with Crohn’s disease and ulcerative colitis.
We dig into emerging data on GLP-1 agonists like semaglutide and tirzepatide and why several retrospective studies are turning heads with signals for fewer hospitalizations and less steroid use in IBD patients. We also get specific about the “who should not use this” question, including risks for people who are underweight or have disordered eating concerns, and why multidisciplinary support with an IBD dietitian can matter. Robin also raises a practical angle many patients care about: whether GLP-1 medications could help slow gut transit for high ostomy output or pouch output, and what makes insurance approval so challenging.
From there, we talk breakthroughs that could reshape the long game of Crohn’s care: fibrostenotic Crohn’s disease and strictures. An antifibrotic drug targeting intestinal fibroblasts is showing early promise, and we walk through what a phase 2 trial result really means, plus why it can still take years before a therapy becomes available in clinic. We also explore the surprising two-way relationship between sex hormones and the gut microbiome, what that could imply for symptom patterns, and why microbiome testing and “fix your gut” products often outrun the evidence.
We end with what makes us hopeful over the next five years: better biomarkers, precision medicine, and AI in gastroenterology, paired with a clear warning about bias and why ChatGPT-style tools can confidently generate misinformation. If you found this helpful, subscribe, leave a review, and share the episode with someone who needs a clear-eyed update on IBD research.
Links:
- Information from Mt. Sinai about GLP-1 Medications and IBD
- Preventing Fibrosis in IBD: Update on immune pathways and clinical strategies
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Welcome And Conference Catch-Up
SPEAKER_00Hi, I'm Elisa, and I'm Robin, and you're listening to Bel Mod, a podcast hearing real talk about the realities of IVD. This week we bring back Dr. Victor Shad and his besties, Dr. Iveris Wong. We had such an interesting conversation with them about all of the research that's been happening in the IBD community and all things that are new. And we know you're really, really going to enjoy listening to these besties geek out about IBD and gastroenterology just as much as we did. Cheers, hi everybody.
SPEAKER_02Welcome to Bowel Moments. This is Robin.
SPEAKER_00Hello, everyone, and this is Alicia. And we are absolutely delighted to be joined by the bestie of bestuses, Dr. Iwas Rang and Dr. Victor Shady. We are so delighted to have you guys on together. Although I wish we were doing it in person because I feel like that would be just like the ultimate and a fun experience. But we're excited to have you online nonetheless. And we're bringing you back for a research roundup episode. So what that means for our folks that are not frequent listeners is this is our opportunity to bring back some of our guests that are amazing and have them talk to us about the very cool things that are happening in research lately for our IBD folks and beyond. So welcome, guys. Are you excited to talk to us about this? Oh excited.
SPEAKER_04I'm really excited.
SPEAKER_00Even if you weren't, you have to say you are now. So you're welcome for that. Robin, these questions are yours. So I'm gonna let you be the asking.
SPEAKER_04I was gonna say though, I take any opportunity to hang out with my bestie. So this is yet another opportunity.
SPEAKER_01I hope you know it's better. We're virtual because we don't get anything done if we were all in the same room.
SPEAKER_04Right.
SPEAKER_00We would definitely have to book more time for sure. I also forgot, what are you guys drinking?
SPEAKER_04Oh yeah. I was ready for that. I was gonna make a cocktail because I was gonna get home, but we're getting a snowstorm, so I didn't get home and I stayed back, and I'm drinking a coffee.
SPEAKER_01Okay. I am getting over whatever is happening up here. So I've got an herbal tea with a little honey to go with my cough drop it.
SPEAKER_02Robin, what about you? We have two kinds of water. Surprise, surprise, regular water, ice water, and also hot water with lemon, because you know, it's cold. I'm not in Minnesota, but it's cold and I'm not used to it, you know.
SPEAKER_00I like to live on the edge. Well, I also have water, but mine is a spindrift sparkling water lemon. And because I am not Snowden and I am actually home, this is my Ritz cocktail.
SPEAKER_04Oh very pretty. That looks pretty. Cheers.
SPEAKER_00Cheers. Cheers, guys. Yeah, it's cognac, cherry liqueur, orange liqueur, lemon, and champagne.
SPEAKER_04Oh, I think I would like that.
SPEAKER_00Yes, we will be drinking those together in Denver. I'll I might have to pack myself some liquor then, Robin, because it requires like seven bottles of liquor for some reason.
SPEAKER_02Alicia is correct. I did send you both some questions because I feel like I know conferences happen year round, but I feel like December, January, February, March is like a heavy conference season. So my first question that I wanted to get answered from both of you is what is the single most exciting or surprising thing that you saw or heard at conferences so far this year? And I love that I put thought in there because what if it's like you just saw this random person doing something in the hotel and it had nothing to do with any of the presentations? Um so you choose, is it gonna be educational or is it just gonna be entertaining? I mean, that is the last one.
SPEAKER_00That's fine.
SPEAKER_04I was gonna go for research. I didn't think about crazy things. Although I can I can put one of those. I was at Guild, which is one of the GI conferences that I love. And it's it started off as an IBD conference when uh 10 years ago, and this year is its 10-year anniversary. And I'm putting a plug-in here. It's such a great conference at a great location. It happens every year in Maui, and now they have an East Coast version of it, which happens in Puerto Rico or in the Caribbean islands, so it keeps rotating and in Maui consistently on the West Coast. In any case, I was at Gill this year, and I was going out for Valentine's dinner, me and my fiance, and we get to the restaurant, and as I'm walking in, I'm like, Michael, Oprah is sitting right there, and I could not stop staring at her. And Michael's like, Okay, can you just act normal? And I tried, but it was Oprah. But I contained myself, I just behaved, went to my table, didn't go talk to Oprah, and just looked at her from afar, admired the amazingness that is Oprah, and that was it. It was great to be in her presence. Oh, and I texted my bestie right away. I kept asking Michael to take a photo because he had a better view of her, and he would not take a photo. So yeah, I have no proof other than I texted my bestie. Iris has the proof, and I stand by I saw Oprah once.
SPEAKER_00So I love that. I would have been like, Do I get a car? Can I walk up to you and just say, get a car? Is this how this works? That would be but I'm with you. That would be hard to contain myself. How fun.
GLP-1 Meds And IBD Benefits
SPEAKER_04So yeah, but now the science. Now the science. Thank you, Iris, for keeping us on track. Well, I thought there were a few things that are really interesting and exciting. So one of the bigger surprises, there were at Crohn's and Colitis Congress this year, a couple of studies that showed interesting effects of GLP1 agonists on IBD. And I thought that was quite exciting. It's GLP1 agonist for those who are listening. It's a gut hormone. They are very popular medications right now that are used widely for treating diabetes and obesity for weight loss, such as semaglutide or terzepatoid. And what was exciting is that there were multiple independent studies in different centers that were conducted. And they reported in these studies separately that people who were with diagnosis of IBD who were taking GLP1 agonists experienced significantly better clinical outcomes than those that were not on those drugs. In fact, we saw less hospitalization, less use of steroids. And I'm just going to highlight one of our other besties, one of our colleagues, Dr. Amanda Johnson. She was one of the leading authors on one of the studies, those studies from Mayo Clinic. And she used the database of 580 IBD patients and found dramatic reductions in relapse-related interventions among GLP1 users and far lower rates of corticosteroid use and far lower rates of hospitalization and intestinal surgery, as well as a reduction in all-cause mortality compared to matched IBD patients who were not on GLP1 agonists. So I thought that was pretty exciting. The pathophysiology behind it, potentially the metabolic effects of GLP1 can have an anti-inflammatory effect, but that still needs to be studied further. These are retrospective studies, so we can't comment on them in a randomized controlled trials. But again, expanding the potential of these drugs and adding to the toolbox of medications that we have for IBD in the future, I think. So I thought that was exciting and surprising study that we saw. Absolutely.
SPEAKER_00I'm curious, do we see any differences between people with Crohn's disease versus ulcerative colitis? That's question number one. And then number two is we did talk to somebody about this, Robin, about GLP ones and folks with inflammatory bowel disease. My concern being if we have people that are already underweight or perhaps have kind of eating disordered eating patterns, restrictive eating, how are we incorporating that in? Because I, you know, it's it's exciting to hear that. And I think we even heard something about like that with combination therapy. So add a biologic in with it together, and it works particularly well. But if we're thinking about this kind of for the broader community, we already know that these folks have eating issues and are potentially underweight. What happens to them? So there's two questions, and one is big.
SPEAKER_04Yeah, Alicia, that's a really important point you bring out. That is a caveat that we have to keep in mind. So again, like I mentioned, these are patients who were in retrospective studies. These are patients who have been prescribed the GLP1 agonist for other reasons, not for their IBD. One of the abstracts specifically was looking at patients with Crohn's disease only. So it wasn't looking at uh UC or Crohn's. But what I would take from that is that these are, like I said, patients that were prescribed the GLP1 agonist for other reasons. And in the future, if that were to be implemented in a clinical trial, I certainly would have considerations that it should be in patients who have concomitant Crohn's disease and being overweight or obesity. It should not be used in patients who are underweight, absolutely, because that can have a detrimental effect on their weight and their outcomes. So I would definitely be very cautious about applying this in clinical practice and not using it in patients who are underweight or with concerns for disordered eating. And it should only be used in the right population, which would be somebody with Crohn's disease and obesity. So great points there.
SPEAKER_01I want to add to that though, because I think there's so much potential in this area that we just don't understand yet. And micro dosing of these medications is becoming more and more studied, even in the IBS space. And so I think there's a lot of untapped potential there for that population that may not need this for obesity. But could they benefit from a smaller dose that doesn't necessarily appetite suppress in the same way, but can have some beneficial impact on their chronic disease? I'm not saying there is right now, but that kind of adjustment of dosing is being studied across other diseases. And so one could see how, you know, if there is strong evidence that prospectively these medications do benefit inflammation, maybe we can study them at lesser doses and see if we can mitigate some of those unwanted impacts.
SPEAKER_00And I definitely think it's this is a great entry point also for even if we're looking at somebody who maybe is a little more like, you know, is not overweight, not underweight, but somebody's somewhere in the middle, this would be interesting to get a dietitian involved to say, oh, so here's your like prescribed pattern of eating. And so, because it's my understanding that folks that do this, it just, yeah, you kind of just lose your appetite. You don't feel hungry, you don't want to eat, but there can be some side effects even from not eating. So if we're working with potentially a dietitian to say, okay, at eight o'clock, you're gonna eat an egg, at this time you're gonna eat this, like and help people come up with the sort of pattern of eating. Maybe we can, you know, kind of balance the scales a little bit. Sorry, scales is not the right word. Balance the, you know, sort of the the pattern for that for folks so that they're still getting the benefits if this is something we see as super beneficial, but also are not falling into kind of some, you know, sort of not getting enough calories.
GLP-1 Dosing And Surgical Anatomy
SPEAKER_04Yeah, that's really a great point too. So again, highlights the importance of the multidisciplinary care that we provide in IBD. And it's uh it always takes a village, we say, in the IBD world.
SPEAKER_02I have a question out of left field about this, because I think about people with J pouches or ostomies and who like it because of the the slowing of the gastric process, like people with ostomies who are struggling or they have heavy output, you know, like could that be beneficial to them to like slow that gastric process and I mean make their life better?
SPEAKER_04Robin, that's such a great point there, too. So we see a lot of patients who suffer with high ostomy output when they have an ostomy, or with people with pouches who uh might be dealing with a recurrent or persistent high output from their pouch. And that idea of using either a low dose of GLP1 agonist or higher doses of GLP1 agonist can slow down their gut transit and intestinal transit and can reduce the ostomy output or reduce the pouch output, is definitely something that we can try to apply right now in clinic. I've used it before in some of my patients who have dealt with really high ostomy output, suffered from that. And it's a handful of patients that I've tried it on. But in these cases, it is very hard to get it approved through insurance for that indication. So I would usually have to find the reason, such as obesity or diabetes. So if somebody has concomitant obesity or diabetes and high ostomy output, I might try the GLP1 agonist to slow down their ostomy output or their pouch output.
SPEAKER_01I think it's really important too that your question is so pathophysiologically relevant because the GLP1s and twos are released in the ilium. And so when someone has a J pouch or has an ostomy, depending on what that ostomy is made of, right, especially if they have a jejunostomy, I mean, a GLP one is almost necessary because you have now lost your body's endogenous ability to actually produce GLP1s. And so from that standpoint, right, for short bowel syndrome, the GLP1s are indicated to really slow down and give a break to your small bowels and slow down their transit through both the stomach and the small intestine. Now, a j pouch that includes the ilium is a different story, but ajeunostomy and things like that, we have to think about in other configurations of patients who have bowel surgery, depending on what's impacted.
Antifibrotic Hope For Crohn’s Strictures
SPEAKER_04Yeah, I fully agree. Another exciting thing I thought was the progress that is happening in treating fibrostonotic Crohn's disease. So treating strictures. Very exciting here. It's usually we've historically said that our medications that we have available are more anti-inflammatory. Once the stenosis or like scar tissue sets in, there isn't much that we could do to reverse it. So many a times we end up having to do either endoscopic uh dilations to open up that narrowing or a surgery to cut that area out. So at the Crohn's and Colitis Congress, Dr. Florian Reeder was giving the keynote speaker, was the keynote speaker, and he presented data showing exciting medications that are targeting the intestinal fibroblast cells. These are the cells that produce the scar tissue and prevents when we target these cells, we prevent stricture formation. In fact, yeah, he challenged the old belief that fibrotic strictures are untreatable scar tissue. And now we're at an era that it's actually potentially treatable. So for the first time ever, there's an uh a targeted antifibrotic drug. It's called ontoniscerten, O-N-T-U-N-I-S-E-R-T-I-B. It was already tested in a phase 2A trial. It's called the Stenova study, S-T-E-N-O-B-A. And this is for Crohn's strictures, and their interim results were positive, showing that the drug was well tolerated and hinting that there were some improvements in the bowel narrowing on endoscopy and MRI over 12 weeks period of time. So currently we have no antifibrosis medications approved yet for IBD. So it's all still in the research realm. But this research is exciting because it's showing that there will be an actual medical treatment for strictures that will be soon available for our patients. And that's exciting, I think.
SPEAKER_02Currently, it's just hospitalization surgery for strictures.
SPEAKER_04Yeah, correct. Currently, strictures are treated more mechanically. We treat them with either endoscopic dilation or fighting them endoscopically or surgically. So the fact that we will soon have medical therapy that targets these fibroblasts, preventing strictures, is very exciting.
Sex Hormones And The Microbiome
SPEAKER_01It's been so much groundbreaking research in the field. And so I decided to go out onto left field. And when I thought about your question of the single most exciting thing, you know, I think there's there's been all first of all, it's it's only March, so I haven't been to that many conferences yet this year. And so I thought it would be okay to take some license and go back to DDW 2025. And this is a basic science session that I went to, but it just really stuck in my mind because it was so cool and something I completely didn't know. And I thought that it would be interesting to your particular audience here. And so I wonder if you guys have heard of the sex hormone and microbiome story. And of course, this is the time that uh, you know, I'm being asked for. So, did you know that sex hormones influence gut microbiome composition? Maybe, maybe you've heard of this. But did you know that the microbiome actually influences our sex hormone composition? So it turns out that in order for our body to regulate estrogen and testosterone levels, we actually need specific microbes in our gut to help break down pro hormone markers. And so this was huge, right? And so this um researcher from Harvard had presented this very elegant series of mouse studies basically proving that when we alter the microbiome and take away some of that beneficial bacteria, we can actually change the circulating levels of estrogen and testosterone in the mouse bloodstream. And so it just made this amazing connection and helps explain why there might be some sex-based differences in chronic illnesses. So, you know, I kind of looked into the literature behind that a little bit too. And there's been a lot of associations of estrogen levels with increased bacteroides, decreased fermicutes, greater microbiome diversity. We talked a little bit about perimenopause, right? Apparently, postmenopausal women, serum estrogen is correlated with higher stool microbiome diversity. And that's a two-way streak. So the more good bugs you have, the better we're able to maintain those hormone levels. And then vice versa, it's able to feed them. And so I thought this interest, I thought this was fascinating and worth sharing with the world.
SPEAKER_00All right. So I'm, and this might not, they might not have given this to the little teeny mice, but I'm curious what antibiotic use means to that, because obviously antibiotics tend to like kind of clean everything out there. So what do we do?
SPEAKER_01It changes it, right? It absolutely does. And, you know, what they did was work with germ-free mice. And so they they did have a model where there wasn't that healthy microbiome, and they did see altered levels of the sex hormones where it was imbalanced. And you can actually change the hormone balance of male and female mice depending on the types of microbiomes they have. They skew towards the other gender. It's it's insane how much like our microbiome controls within our bodies. Now, antibiotic effect is is more temporary. And so I actually I actually remember they studied it. I was like trying to find my notes from that DDW, and I don't know which one of my paper notebooks it's in. But they did see that impact as well from giving the mice antibiotic treatments.
SPEAKER_00That is really fascinating. And now I'm wondering, what do we need to do to like help with the biome to you know bring back good bacteria in the biome while you're also doing antibiotics, just even more protection of this?
SPEAKER_02Just makes me think about somebody like me who's had surgery who doesn't have large intestines. So my microbiome had to like rebuild itself in a new environment that wasn't meant to host like your large intestines is right. So MEMOS! Where's my estrogen stuck in my J pouch somewhere with my redeveloped and remodeled microbiome?
SPEAKER_04I think that's interesting. Hypothesis generating. I don't know how much implication we would have right now or how much we know to apply it for humans, but it's really an interesting hypothesis generating for like future studies, like like you were saying, iris about sex-based differences in whether it's disorders of gut-brain interaction or in IBD. Because we do see in in IBD also hormonal impact on disease activity, as we had seen that estrogen can have pro-inflammatory effects on inflammatory bowel disease. If you recall one of our studies, though, it was a retrospective study, multi-center, looking at the impact of gender-affirming hormones. So, again, exogenous sex hormones in transgender individuals. That was published in the American Journal of Gastroenterology and was a group of my colleagues who were multi-centers, led by Dr. Audrey Bennett from Vanderbilt. But with that study, we saw that in patients who are starting gender-affirming hormones, whether it's estrogen or testosterone for gender-affirming care, who have a diagnosis of IBD, we looked at one year after starting the gender-affirming hormones and one year prior to that. And we were interested in seeing rates of IBD flares. And what was interesting is that there was no increase in flare one year prior and one year post when people start gender-affirming hormones. So what we deduced from this retrospective multi-center study was that gender-affirming hormones do not have an impact on causing IBD flares. But at the same time, with altered microbiome, these are all very interesting hypotheses generating for future studies that could have implications on patients with gastrointestinal conditions. So I I love that.
SPEAKER_02What does that do for IBS with micro the effect on hormones in the microbiome? And we don't know.
SPEAKER_01I think we know a lot about, you know, changes in cyclical symptoms or women's menstrual cycles. We know it happens, but when you do survey studies of what exactly happens, some women get diarrhea, some women get constipation, sometimes the pain gets worse. Right. The story is maybe a little bit more clear in IBD, where when women get pregnant, you know, a portion of them go into remission. A portion of them will flare. A portion of them will not do anything. And so our bodies are so different. And it's it's unclear right now how the interaction of the hormone and the disease really tracks. And I think the microbiome might be part of that key is does it depend on what diversity you have that is unlocking the hormones or interacting with the hormones that then influences your disease state? Or it really is, I think, also a factor that these diseases are heterogeneous. We can call it IBS, but your IBS, my IBS, somebody else's IBS is not the same disease. We just don't quite understand it yet. And so it's almost like, you know, Victor tells me all the time that fistalizing Crohn's and, you know, non-fissalizing Crohn's, like, yeah, we can call it Crohn's, but are they truly the same disease? You know, I maybe not, but at least you guys have a disease with a biomarker, right? And so I think it's so hard to answer that question because until we can really say, okay, let's study bile acid malabsorption, then maybe we're on to something where we can study truly how a hormone impact and a microbiome impact interplay. So all that to say is I don't know, but I have a good explanation for not knowing.
SPEAKER_04That's my favorite thing about my bestie. She's so smart. And every time I go to her, it's like she gives me the best explanation, but of why I don't know.
SPEAKER_01Right. Like I just'm very good at explaining my ignorance.
SPEAKER_00It's important to also recognize when you don't know something, and but having a good explanation is great.
SPEAKER_04So no, let me tell you that a lot of our patients who come to us have extremely smart and inquisitive questions that either generate research projects for us, which is incredible. A patient asks me a question, I'm like, this is great. I really don't know the answer, but thank you. Let's research it and try to investigate it. Or we genuinely and humbly tell our patients, this is a really smart question, but I really don't know the answer. But let's try to figure it out together, or let's try to better understand how it works for you with your lived experience. So a lot of the times, like even if we don't have a biomarker, when you're diagnosed somebody with a disorder of gut-brain interaction, versus in IBD, we do have biomarkers, but there's so much things that are personalized and individualized for a human being that that's where we try our best to go off of the evidence, but also try to put our patients' experiences and try to be very clear and transparent with our patients of what we don't know, we don't know, and we'll see if it works for you or not.
Why Early Biologics Can Matter
SPEAKER_02Question number two is what's the research story right now that you think every I said IBD or GI patient should know, but probably doesn't.
SPEAKER_04We've been publishing data about this for years, trying to better understand the targets of treatment for IBD and the approach to how to do the medications and treatment for patients. Historically, they used to talk about step-up therapy, so you start low from and then start going up. That paradigm has completely shifted. And what I want patients to know right now that we have data upon data that are showing that early aggressive treatment can change the course of IBD. This is very important to keep in mind. There's a ton of evidence that is showing us that treating IBD early and proactively can fundamentally improve the long-term outcomes of IBD. And this has made it all the way into the AGA Crohn's disease of treatment guidelines, where the guidelines are now recommending that we need to start with advanced therapies upfront in order to improve the outcomes of our patients. And also another important study that was presented at ECHO in this past ECHO 2026, it showed that it was a trial called the Profile Trial, and it's a landmark trial where they randomized patients who are newly diagnosed with Sperm's disease to immediate combination therapy of a TNF blocking agent, biologic plus an immunosuppressant, like immunomodulator, that is, like azotherpine, or the conventional stepwise approach, starting with milder drugs and reserving biologics for later, only if needed. And they looked at these patients over five years. The long-term outcomes were really striking because over the five years, these patients who were treated with the top-down biologic therapy had a fourfold lower risk of needing major abdominal surgery compared to those who were treated with the step-up therapy. And so, again, that is a very important message to take home. Because in clinic, we experience it a lot where patients come and are really afraid and worried about when we talk about advanced therapy. And I believe that there's a stigma that's assigned to the term advanced therapy because it is scary when you hear that your doctor is prescribing you an advanced therapy or when you hear the word biologic. These are scary terms. Doc, why can't you just give me a pill that can fix it? At the end of the day, we have seen a lot of data. We have a lot of publications that show the safety of generally the safety of many of these biologic drugs and the importance of starting with aggressive therapy upfront for moderate to severe Crohn's disease so that we can modify the disease and reduce the risk of any complications down the line. So that's the message I would leave with patients.
SPEAKER_02I think the term aggressive treatment is what because as somebody who was not put on biologic originally because they weren't approved yet when I was diagnosed, I just think that patients I feel like the terminology that we use is what creates the stigma and creates the fear. I feel like it's the same way about surgery, the way that I know that's changing, but the way that physicians talk about surgery want to avoid surgery. We surgery is the last resort. And then we wait till people we wait till people are so sick that that there is no other option. And we have created all this fear and stigma around surgery when it's just a treatment option. And I feel like it's the verbiage that we use around biologic medications that creates the same fear and stigma. Because you say aggressive, and I say I feel so much better. I'm more likely to get in remission, I'm less likely to have symptoms. So aggressive from what's the standpoint that we're talking about? What's the foundation? Why are we calling it aggressive? Because it's the treatment outcome that's gonna work, that's it's more likely to work. I'm not gonna say that's gonna work because what are we still at 60% or so? Right. But it's the treatment application that's more likely to work and also keep you better for longer.
SPEAKER_04You nailed it, Robin. And language matters always, whether in our clinical interactions with our patients, whether when we are publishing our research and whatever we write or what we communicate, language really, really matters and has an impact. And so we need to be working to destigmatize a lot of things that that have been attributed to uh a lot of stigma.
SPEAKER_01So I think this is not just about patients, right? I think that the stigma is how we sell it. The stigma, this is a message that doesn't go just out to patients. It goes out to every primary care GI provider who encounters an IBD patient. Because if I say, oh, your disease is mild, let's start with a low-risk treatment, and that's how I'm selling it, that's how the patient's perceiving it when I escalate therapy. If I come out of the gate and say you have Crohn's, and the number one recommended thing for you right now is use the kinemat, it's not scary. This is just the right size for your disease. Then how I sell it matters, right? So I think this is such an important thing to give not just the patients, but all providers for these patients, for our patients, like to learn that this is now the paradigm shift. I'll I'll skip my answer to number two, but I'm gonna say that this was actually one of the most exciting things I've seen all year. I was at the evidence-based medicine conference hosted by medicine evidence-based medicine. It's called the Great GI Debates. And I actually saw two great IVD doctors debating this exact question of do you do dual biologic therapy for moderate Crohn's? And you know, the the there's obviously no clear answer in moderate Crohn's, right? It's specified that way. But man, were they really into it? They came out in like wrestling outfits, there were bandanas, there were boxing gloves involved, there were some low blows in some of those presentations, but it was a very valiant debate. And so I feel like I learned this concept really well because of them, and that we really do need to shift the paradigm and hit IBD early and try to get our patients under control.
SPEAKER_04And where that matters too, Iris, is in our clinical practice because we end up having to go through a lot of hurdles with insurance companies. And that's very, very, very frustrating because we have a ton of evidence, paradigm shifts, guidelines that are all recommending advanced therapies up front. And yet you end up having the conversation with your patient, destigmatizing, doing everything you can, and then you go prescribe it, and then the insurance denies it and recommends mesalamine for Crohn's disease, which we all know does not work.
SPEAKER_01To get me started on that, I could go all night about it.
SPEAKER_04I could go all night. The number of hours that we've lost in going back and forth talking to a bot or to somebody who doesn't know the data, trying to convince them that this patient needs that right therapy. These are the guidelines. It is very frustrating. So the the message that we're putting out there is not only for patients, but also if insurance companies are hearing, we need to do better for our patients and for the people we are taking care of.
SPEAKER_00I don't think they're listening. No, they're not. They're not.
SPEAKER_02They're not. If you if you're a patient and if you have received a denial, you can go to the Crohn's and Clitus Foundation website and look up all the states that have passed step therapy laws to where they can't deny it and they can't force you to go on step therapy.
SPEAKER_00Caveat Robin, caveat. That's only for state-regulated plans, which I happen to be on one. If you are on an ERISA plan or a plan with an employer that has people on multiple states, so probably someplace like Mayo Clinic, frankly, or then you are not governed by the state. You're governed by federal regulations, which is why we need to pass step therapy in states and federal.
SPEAKER_01All your senators.
SPEAKER_00Yes.
SPEAKER_04Yes, yes, yes, advocate.
SPEAKER_02Yes. If you go to any national nonprofit website, there's going to be templates you can use. There's probably a little link that says click here to message your state representative. They make it so easy for you. And you should sign up for notifications and you should always click that little link and message your representatives about important issues like this.
SPEAKER_01I I actually recently heard that it's more effective to call. And I don't know if that's true or not, but I'm going to pass that along. And as a millennial person who hates to call people on the phone, I'm still going to share that advice.
SPEAKER_00What I will say is if you do do the click to go send an email to your legislator, make sure that you personalize it because when they see the same email over and over and over again, then yes, they do tend to just count them, if that, and then toss them. The other thing is also make sure you're only emailing or calling your legislator. So as much as it would be great for them to pay attention to other people, they don't care about you. So sorry about that.
SPEAKER_04I'm so excited that we are talking research and advocacy and everything in between. So this is phenomenal.
Research Lag In Real-World Care
SPEAKER_02Amazing. All right, moving on to question number three. This is something that fascinates me. And Stacy, a friend of the show, Stacey Collins, and I have spoken about this because she goes to conferences is so excited and then gets so frustrated about this thing. So what's the gap between what's being presented at conferences, like what's happening in research, and what's actually available to patients in clinic at their next appointment? I feel like there's a huge disconnect between what's happening in research and what's happening in clinical practice. And that's across the board.
SPEAKER_04It's not just an IBD, obviously.
SPEAKER_01I mean, I think we already talked about an IBD, right? It's it's exactly that, that like we have these great evidence, great studies that show that hard-hitting biologics work and yet we cannot make it happen because of this exact issue. That clinical practice is not research. I think the microbiome story is a huge one as well. Right. And that's the one that I think is very, very tricky because the research world is so sterile, if you will. We control so many factors. We study like two bugs at a time, or a mix of bugs, or very controlled conditions. And it just does not translate to real life. And so we have all this great research coming out about the microbiome because everyone's very excited about knowing what it impacts, how the diversity in both alpha and beta diversity, right, either within person or between people diversity, how all of that shapes this like hormone-producing garden or controlling garden in our bodies. And none of that translates to clinical. Because then when you look at the guidelines that say, or patients will come to me and ask, what do I do to improve my microbiome since it's so important? I have to tell them I don't know. Because when you look at the guidelines, there isn't meta-analysis data. None of it is strong enough to recommend any sort of probiotic. But for the most part, we just don't know, right? We know that a well-balanced, diverse microbiome is beneficial to health. How to achieve that and even what exactly that means in every individual, we actually don't have the evidence for that. And I really want to talk about this because there's many, many people out there who claim that they do, right? That are selling uh gut microbiome profiles. And then we have to interpret those profiles. And I'm like, I don't know. Like, yeah, it says this, but like, does that really mean anything? Don't know. Even worse than that, though, are anybody who claims that their product can fix a microbiome. I I'm very, very, very wary. Maybe they're right, but I would be very, very, very cautious about that because we don't know what we're trying to achieve. So how can you say your product achieves it? And so I just want to put that message out there for patients that yes, there's a huge boon in microbiome research, but we actually have no clinical products that really truly create a beneficial microbiome besides eat the rainbow, eat a lot of fiber, get those prebiotics in through food. And so that's sort of where I tend to counsel my patients. And yeah, that's that's my answer for that.
Clinical Trials And What Happens After
SPEAKER_04Another thing, if I may add, because this is very important what you're mentioning, Iris, is that we have to be aware that things that are presented at conferences and research that is exciting will take a lot of time to make it to clinics. So let me remind people let's say we were talking about the antifibrotic drug. I did mention that was a phase two study, clinical trial. Clinical trial world is very rigorous. You start with first of the drug discovery, then you go into the pretrial drug development, then you start going into the clinical trial, which has multiple phases to check the first safety of the drug, then you check the efficacy. So it just goes on from one phase to another. So if a drug is still in phase one or phase two, it still has to go through phase three trials, which usually is a study that would be much larger than it, phase two trial that might take a couple of years, and then it would have to go through multiple regulatory approvals, has to go through the, for example, in the United States, it would have to go through FDA approval, and then once the FDA approves after all the clinical trial phases, and then the FDA approval for a certain medical condition for that drug, then it has to go through the insurance coverage decisions and approval. So if you see a drug that is exciting in a phase two study at, let's say, Crohn's encolitis congress of 2026, that drug might not be on the market till maybe beginning 2027 or even sometimes later. So that is something that we have to keep in mind, and our patients have to keep in mind that yes, there are exciting things, but we call, we say that they're all in the pipeline and they're gonna be coming, but we have to go through all these regulatory processes that are necessary to make sure a drug is safe, to make sure that medication is efficacious and it's not causing any harm to our patients. So that's another very important point as a gap from research to clinic and clinical practice.
SPEAKER_00So say you're participating in a clinical trial, it's a new medication, super exciting. One of these things we're talking about, right? What happens when the trial ends, but the drug isn't on the market yet? Do you get to keep taking it? If it's working for you, obviously.
SPEAKER_04So it depends on what type of trial it is. If it is a double-blinded trial, that neither you as the participant nor the primary investigator or any of the investigators know what you were randomized to, then neither the investigator nor the patient would know what you were on during the period of the trial until the trial is over and until the data is analyzed. So that would be a few years after the trial is done that you might get information on what you were on or not. So by the end of such a trial, then you will have to go back to therapy that you were on or any other therapies that would be indicated at that time. If it's an open label trial, then the patient and the investigators know what you are on. There's no blinding there. And so many a times, for example, there's a current trial ongoing that is comparing two different biologics that are already known and are already on the market, but they're just being compared head to head. So when that trial ends and you're in an open label trial, we know what you've been on. We know it's been effective while you were in the trial, then you can continue it afterwards. So again, it all is dependent on what phase of the trial this is, what is the design of the study, all of that has implications on whether or not you will remain on the drug or would have to go off of it afterwards.
SPEAKER_01To your original question, though, if it's not on the market and you are in that trial, you don't get the drug after the trial is done.
SPEAKER_03Right.
SPEAKER_01Because there is no drug on the market. So that that is really disappointing. And you don't even know whether you were on the drug for the most part, unless you're in the very early phases where we're doing kind of dose testing.
SPEAKER_04But that's not to dissuade people from participating in clinical trials. Because clinical trials are extremely important for IBD and for any GI condition, because they are the basis of how any of the medications that are available now on the market have become available. There was a time before the 1990s where there were no available options other than steroids for azothyraprene for Crohn's disease. And then starting 1997, infliximab was the groundbreaking medication. And then it took a while. It took several years until adalimumab came on the market, and then another long period of time till uh Vedolisumab. And then now we're having multiple per year, which is very exciting. But that wouldn't be happening without clinical trials and without the patients who have been very kind and have dedicated their time to participate in clinical trials. So we really think this is a very important part of all the GI care.
SPEAKER_01Now, these are the things that we go through with you before you sign up for a clinical. What happens when the trial ends? What benefit to you would there be to joining a trial? What benefit would there be to society to joining a trial? And we do greatly appreciate everybody who has the altruism to be part of these scientific endeavors. It is the way progress is made.
The Next Five Years In GI
SPEAKER_02Last question. You know, I gotta end it on a good note. What are you most hopeful about in GI over the next five years?
SPEAKER_04I'm very excited about where IBD is heading as a field. If the past year's conferences were any indication, the next five years are gonna bring us more treatment options, more personalization and care, better outcomes for our patients, better addressing health disparities. And there are so many exciting things on the horizon. So I'm very optimistic. There will be a richer arsenal of therapies. We're talking about antifibrotic drugs now. We're talking about precision medicine and personalized care. So we're at the interface of using multiple biomarkers and genetic markers at tailoring treatments for patients and also incorporating the use of artificial intelligence and large language models and predictors to be able to better create algorithms that predict what patients respond to what drug and for better personalized care. And we will be also having better disease-modifying interventions, as well as a lot of exciting data that's looking at pre-IBD. So trying to better understand who is the person who might get IBD and if there's any interventions that we would be able to implement before a patient even ever gets diagnosed with Crohn's disease or ulcerative colitis. So I see a future where we might even be reaching the point where we're curing IBD. And that's a bold, big word, but I I have that hope and optimism.
SPEAKER_01This is why he goes first. Because I don't have, I don't have enthusiasm or I think you could tell who the who the optimistic one is. I think in the field of IPS, I think personalization is a big thing, right? Trying to take this big symptom-based bucket of disorders of gut brain interaction and really try to hone down and understand the pathophysiology. One of the big things that has hit the market is this gastric surface body mapping. And so kind of like an e-commerce. For the heart, but for the stomach. Where now we can study the electrical activity across the stomach and understand how that correlates with symptoms. We're working to understand how that gets altered after eating a meal. We're trying to understand how that relates to the traditional testing we've had of gastric motor function and whether this is probably an additive impact so that we can now phenotype a different bucket of disorders that didn't previously have a motor impact. In that idea of understanding sensation, our lab is actually embarking on this journey. We were fortunate to just get some grant funding recently for this to quantify hypersensitivity in the small intestine. This is like an area that we have not really been able to reach very well with all of our tools, but I'm hoping to develop this test to be able to say, okay, this is what normal bowel small intestine should feel like under this type of stress. And now, because your small intestine under the same type of stress is feeling 10 times worse than what I would expect a normal average unsymptomatic individual to feel, then you have hypersensitivity. Part of that is going to involve the IBD population because patients who have small bowel Crohn's have very expected hypersensitivity. And so, what about, you know, what does that pain level look like? How does that reaction look like? And so then when my IBS patients who don't have ulcers or strictures have the same level of pain, then I can really use that test to say non-invasively, hey, your your small bowel is overly sensitive, and we can turn that around because now we know what the problem is, right? So I'm really excited about embarking on that work and hopefully it'll pan out the way that I claim it will pan out too.
SPEAKER_04More and more developing biomarkers for different elements of GI disorders is really exciting. So with DGBI, biomarkers is really important for individualizing care. So I'm very excited about that. So maybe I'll end on we always have to remember, and that's I think part of where the future of IBD research and IBD care in the clinic is going, is that we recognize that IBD care is very holistic and that we treat people as a whole human. And so I think that with all these different advances, we're gonna be able to achieve a better support system for a patient from a holistic uh point of view, whether care coordination from dietitians, nutritionists, GI, mental health, surgeons, and then with multi-omics and AI predictive models, all of this is just gonna make for a better holistic approach for our future.
SPEAKER_00So you mentioned AI. And this, I was just at a meeting where we talked a lot about AI. And one of my concerns for this is that we already know that, as Robin said, women are not just small men or alternative men. And a lot of the research that we're putting into AI, a lot of the data we're putting into AI, we already know is not is skewed towards white men, to be honest. And so I am with you. Like I'm hopeful about AI. I think there's so many cool things that could come from this. There's so many potential, so much potential there. But how do we, you guys as providers, us as patients and and advocates, make sure that we're trying to right set that data so it's not continuing to perpetuate shit, you know, like, you know, it's garbage in, garbage out. How are we, how are we fixing the garbage?
SPEAKER_01Yeah, I think it goes back to it goes back to what Robin said, right? We need original data. We need those people to join clinical trials and be willing to share their data. And I think that's really the key is so so one, it's that it's that we have to recognize that it's shit in, shit out, right? And so if we don't put in good original data, it's always going to be skewed, it's always going to be biased. And that's something that's very important to understand about AI generated data. The other thing to understand is how is the people who are doing the AI research are now getting better. They are getting better at understanding what that means to do AI research. They're no longer just saying, okay, well, AI can fix it. Okay, we can do this. They're now thoughtful, ethical, right, in understanding what that computational power is able to do and understanding what it's actually doing and not just leaving that up to the computer scientists who understand the code, right? But but we're building this generation of physician scientists who speak the language enough to say what you put into that input cannot be extrapolated to this output. So I think we are seeing that more and more in conferences. And that's really reassuring to me, because I definitely had those same concerns that you do. So I think those two things together, right? Patients holding the researchers accountable and the researchers knowing what they are doing at an expert level, I think those two things will shift the paradigm.
SPEAKER_04And also a lot of the AI work is governed by an ethical AI framework. So there are so many, just like with clinical trials, there are so many regulatory boards to make sure that a clinical trial is safe and that it's following the proper uh protection for the participants in the trial. Similarly, they have designed and there are so many regulatory boards and compliance boards and ethical boards that have been put in place to make sure that medical AI that's being developed is equitable, is fair, is explainable, with a lot of human oversight, as well as with a lot of security for patients' information and ensuring that the data is very well protected. So this is a very rigorous field that has to be continuously monitored, continuously regulated. I am afraid too, I'm worried the same worries that you shared. But I know that there are so many regulatory boards that are making sure that we are conducting all that work in an ethical setting that just gives me some uh reassurance. But I I do share your fears. And those those points that you brought up are extremely valid.
SPEAKER_00I think there's it's it's one of these where it's like there's so much good that can come from this. I think there's so much promise, but also it's like it feels like it's the horse is galloping way too fast. And we're like, like you said, Iris, like, you know, we don't have the data to put in yet to write set. So, but it's already, you know, 20 steps ahead. And so by the time we get the data and can input the data, shit's also it's already happened, right? You know, like systems have been in place, things have, I mean, we already see this. Like insurance companies are using AI to deny people now. Patients are using AI to help them figure out stuff that maybe they should be careful not to have AI help them with. You know what I mean? So I think it's, you know, we're already so far down the track that it feels a little bit like I feel very old when I say this, but it's like I'm scared of this because it's already so like so advanced right now that you know it feels like we're behind the curve so far that we won't catch up.
SPEAKER_01So but this is an important conversation to have, no matter how far behind the curve we are. Because if we just give up and say, well, horse is out of the barn, then we're never going to get it back, right? Like I think pushing for regulation at whatever level needs to happen, whether it's medical regulation for clinical trials, federal regulation for whatever else is going on, right? All of that is so important. And it takes people being willing to engage with what this technology is capable of to not just say, okay, I'm too old to understand this, right? And but also not blindly say, well, ChatGPT works and therefore I will use it, right? Or any other plug-in, any of the AI settings. Oh, it's gonna give me answers, my doctor won't, and therefore I use it. Like we're just selling our data for free. So those are things that I think we have to talk about, we have to learn about so that we can keep ourselves safe and then hold the companies that are developing these tools, collecting our data, hold them all accountable to the safety and security of that. There's some very scary things that can happen. And we need to be able to know what those are so that we can protect ourselves.
SPEAKER_04Just to remind people listening, especially patients who might be, instead of now Googling their symptoms, they're Chad GPTing their symptoms. Remember, Chad GPT, the way it's built, the way it's designed, it's designed to predict words. What that means is that it's built to answer you, no matter what you ask. So it might many a times generate a correct answer, but many a times it might confabulate or come up with a fake answer that sounds very smart, but it's answering you nonetheless because it's meant to answer you. And many a times, if you notice, it's meant to validate you. So even if you're having an argument with a friend and you go to ChatGPT and present the argument to ChatGPT, ChatGPT is gonna answer, validate you. Even if you might have been wrong and you should be going to apologize to that friend. So that's what the fear of these tools that are at hand are now. So when it's in the wrong hands, you're not gonna know how to interpret the data that comes out of it. While, like if you talk to a physician, I might ask ChatGPT a medical question, or we have another one that's more medical called open evidence. But in any case, I might ask it, and what it answers me might be wrong, but I have the knowledge that would allow me to scrutinize the data, scrutinize the resources and recognize what's wrong and what's right. While in the lay person's hands, they might not be able to differentiate and it might sound like it's ground truth and it's not. It's meant to answer you, no matter what. Always verify, always be scrutinizing it and don't use it as ground truth at all. It's meant to answer you.
SPEAKER_02Alicia, I stole this whole show and asked all of the questions, which guys, that never happens. So I feel pretty special right now to be able to be the one to ask all the questions. Thank you both so much for coming on, sharing your expertise, your passion, your excitement about research. I if I've said it once, I've said it a million times. I love listening to researchers talk because they are so excited about what's happening. I mean it gets me excited about it. Thank you everybody for listening. And cheers, everybody.
SPEAKER_04Cheers. Thank you for having us.
SPEAKER_02Thank you.
SPEAKER_00Cheers. Thanks, guys. This was so fun. If you like this episode, please rate, review, subscribe, and even better, share it with your friends. Cheers.
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Amber J Tresca