Bowel Moments

From Transplants To Tailored IBD Treatment with Janette Villalon, PA

• Alicia Barron and Robin Kingham • Season 1 • Episode 147

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Want a clear, human guide to modern IBD care without the jargon? We’re joined by Janette Villalon, a physician assistant at UC Irvine’s IBD Center, who brings a front-line view of what truly helps patients: personalized therapy choices, honest safety talk, and practical plans that fit real life. She traces the evolution from a handful of anti-TNFs to a wider toolkit—anti-integrins, IL-12/23 and IL-23 inhibitors, JAK inhibitors, and S1P modulators—and explains how we match treatments to goals like fast relief, fewer side effects, and coverage of extraintestinal issues such as arthritis, uveitis, and psoriasis.

We dig into how APPs power the day-to-day of IBD clinics, from education to monitoring and rapid access, and how the GHAPP Conference and national societies elevated advanced practice training. Janette breaks down when clinical trials make sense, why strict inclusion criteria matter, and how logistics can steer decisions when someone is very sick. She demystifies biosimilars, outlining FDA standards that support confident switches when insurance demands it, and shares how she helps patients balance infusions, injections, or pills against travel, work, and adherence.

For those planning a family, Janette offers timely guidance: aim for clinical and endoscopic remission three to six months before conception, continue pregnancy-safe maintenance therapy, and discuss starting low-dose aspirin at 12 to 16 weeks to lower preeclampsia risk, coordinated with maternal-fetal medicine.

Looking ahead, we explore precision medicine and AI—predictive markers, microbiome insights, and smarter monitoring that could reduce trial-and-error and catch flares early. The throughline is empowerment: ask questions, read, return for follow-ups, and shape your care around your life. We close with community resources from the Crohn’s & Colitis Foundation and a shout-out to Camp Oasis for young patients.

If this conversation helped you, subscribe, share it with a friend, and leave a quick review—what’s the one topic you want us to go deeper on next?

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SPEAKER_02:

Hi, I'm Alicia. And I'm Robin, and you're listening to Bow Moments, the podcast sharing real talk about the realities of IBD. Sir. This week we talked to Jeanette Violone. Jeanette is a physician's assistant at the University of California Irvine IBD Center. We talked to her all about how the PAs work within the IBD Center and how they support the physicians and the rest of the team. We talked to her about treatment choices and how she works with patients to make the right selection and to give them all the education that they need to choose the right thing for them. We talked to her about pregnancy and inflammatory bowel disease and her special interest there and the advice that she has for patients and so much more. We know you'll enjoy this conversation just as much as we did. Cheers.

SPEAKER_01:

Hi everybody, welcome to Bell Moments.

SPEAKER_02:

This is Robin. Hey everyone, this is Alicia, and we are so excited to be joined by Jeanette Villon. Jeanette, welcome to the show.

SPEAKER_00:

Thank you so much for having me. I'm so excited and humbled and honored. And I'm really excited to be here with you guys today to have this casual fun conversation about IBD and what's going on. So I'm really excited.

SPEAKER_02:

Well, we are very, very excited to have you and to learn all about you in just a second. But our first very unprofessional question is what are you drinking?

SPEAKER_00:

I don't know if that's a great question. And I'm probably a really, really bad example because I should practice what I preach, which is drink water and it's so healthy for you and hydrating. And I hate water. Oh my God. I wish I loved it. I try so hard to drink it. I really do. But I'm currently drinking Gatorade Zero. You know, I kid myself because it has no sugar, but it's probably bad sugar. But yeah, I'm drinking Gatorade Zero and it's the glacier freeze. That's that's my choice. I wish I could say I was drinking water with ice with a touch of lemon, but no.

SPEAKER_01:

I feel like a lot of people who listen are gonna feel justified. They're gonna be like, yes, here is a medical professional saying that they don't like water.

SPEAKER_00:

Yep.

SPEAKER_01:

Robin, what about you? I am drinking ice water, but I also have coffee though. I will drink coffee all hours of the day, even though it's nighttime. I don't care.

SPEAKER_00:

Oh, I'm the same way. I I love my coffee too.

SPEAKER_02:

What about you, Alicia? I am drinking a spindrift spiked. The sparkling water is spiked. This is uh real squeezed grapefruit. So I'm excited.

SPEAKER_00:

That's exciting. I haven't even opened it. If I would have known, I would have brought like a couple like with my favorite alcohol if I if I do drink, because I'm more into the sugar than the alcohol. So like a Bailey's or mojito with extra mint, totally my favorite. I do love a mojito.

SPEAKER_01:

Yes, I do love a mojito.

SPEAKER_00:

Mint is very anti-inflammatory for the gut, so I feel that it's I'm actually nourishing my teeth. And then margaritas. Those are kind of oh, and Malibu babies. I love those too. So it's a Malibu baby's. I don't know what that is. It's coconut rum with pineapple juice and a splash of cranberry. And I'm very particular because sometimes bartenders will instead of pineapple juice, we'll put in grapefruit juice, not the just not the same drink. So it has to be pineapple and a touch of cranberry, and it is so tasty.

SPEAKER_02:

So, Jeanette, next question for you is what is your connection to the IBD community? What brought you into this as a profession?

SPEAKER_00:

So I'm gonna be honest. So I've been a physician assistant for many years. I graduated PA school in 2001, and then initially my first job out of practice, out of school, was a job at Mount Sinai in New York, New York. I was actually living there because I went to school at Cornell and I lived in New York City for a few years. It was fantastic. And I actually ended up getting a job at Mount Sinai, and I started my world in my experience, if you will, in transplantation. So I worked in liver transplant and intestinal transplant initially. Back then, my experience with liver transplant was fantastic. I will say liver transplant, this was at that time in the early 2000s. I'm sure it has changed. Success rates were pretty low. I'm sure they've gotten much better. But at the time, to find out that this was an option for patients that had short gut syndrome or other issues with their gut to actually have an intestinal transplant was pretty amazing. So I got a lot of experience there. And then I ended up at UCI when I ended up coming home to California. I started in UCI, uh, working in hepatobiliary and liver kidney transplant. So I did that for many years. It was amazing. I got really comfortable with working with a lot of immunosuppressive medications, and I'm very clear on using the word immunosuppressive because as I talk later, IBD medical therapies, a lot of patients truly believe that they're immunosuppressed when really a lot of our all of our medicines are really immune-targeted, which is a difference. Outside of prednisone, of course, which we use, which is immunosuppressive, all of our therapies are really immune-targeted. So that really impacts our care in a much more positive way in terms of side effects and things like that. And then in 2014, this kind of just landed on me. I had my daughter Eva when in 2012, and I wanted to work a few less hours and be have a little bit more flexibility and kind of started putting it out there even at UCI that I was looking for something different. And that's when I met Dr. Nemisha Parek. She is currently the IBD director at UCI. She's the one that established the program, created the program, and has built the program. And I did explain to her, quite honestly, I was looking for something a little bit more flexible with less hours. So I work about 32 hours a week, uh a little more in terms of admin time, but it's flexible, which is what I needed. And, you know, it's one of the things I tell a lot of people, I wish I would have started this a lot sooner when I was single and had a little bit more time because I do realize that IBD is an amazing field. It really started growing a lot when I entered the profession. And since then it has grown really exponentially. And so that's kind of how I landed in it. You know, to think back, I started in October of 2014. And if we can imagine kind of the spectrum and of the medications that we had, we really had the anti-TNFs to work with, which included infliximab, adolimimab, and then we worked with Certalismab and then Symphony, which I can't remember the brand name because honestly, we weren't using it that much. And then we also had obviously the immunomodulators, including the thiopurines and methotrexate. And then we had gotten vitalismab in 2014. And so that's kind of where I started. And then since then, it has catapulted to a bunch of new medicines, which I'm sure we'll go to get into later.

SPEAKER_01:

Besides the medications, what other changes have you seen in the past decade from your point of view in clinical practice? Because there's so much research in IBD, but like how does that translate into actual patients' lives every day? Because it has to go through the clinic, right? To get there.

SPEAKER_00:

Yeah. Well, let me say first, when I first started, what makes IBD so different and what was so kind of exciting about it and so different for me, for me, is I wanted to get in there and be like, okay, what's the algorithm? What do you do? Tell me steps one, two, three, kind of how do we do that? And it was easier, I think, looking back back then, because we didn't have as many therapies at our disposal. So what we've seen in the last decade or so is such an expansion of therapeutic options that the discussion of positioning drugs has become a lot more complicated. And so there is always a lot of research. We have a new classes of drugs that we are now using. Initially, for example, after betalismab came out, we've had the, which is an anti-integrin, we've had interleukin 12 and 23 blockers, we've had JAC inhibitors, we've had interleukin 23 blockers exclusively, and S1Ps as well. And so we have so many drugs that the discussion of positioning has really become an issue and how you pick the best therapy for a patient with IBD, how we can incorporate the use of knowing the patient's potential extraintestinal manifestations that they may have and seeing what we can treat with one drug that may treat several things versus various medications for each of the individual conditions. So in clinical practice, another thing that I think has grown a lot for me personally as an advanced practice provider. Again, I'm a physician assistant, but within the umbrella, it also includes nurse practitioners. Is we've really gone a long way to get information to our advanced practice providers, which have really become crucial in terms of the day-to-day management of patients as physicians work to do other things, whether it's doing their procedures, whether it's participating in conference and their speaking events or conferences that they may attend. Really, it's the advanced practice provider that we're seeing a lot more readily on the front lines of IBD. And when I first started, there wasn't a lot of avenues and there wasn't a lot of opportunities where APPs were given direct information to us as APPs. We would attend conferences much like the physicians, but what has really changed over the last decade is kind of this partnership between physicians and APPs, where they have really escalated us in terms of providers for inflammatory bowel disease. So, for example, we have the GAP conference, which is huge. It's the Gastro and Hepatology Advanced Practice Provider Conference. It's for APPs, taught by APPs, led by APPs, for other APPs. We didn't have that. This is about eight years old. And we are now teaching each other about inflammatory bowel disease as well as other GI conditions. And so I think it's really important because the team for inflammatory bowel disease is really growing and becoming much more knowledgeable. We've got another advancement over the last 10 years is a huge focus, not only on medical therapy, but the comprehensive care of the patient, including diet, psychosocial aspects, having patients meet with social workers, having them meet with dietitians, registered dietitians. Me personally, I did a fantastic program through Cedar Sinai where it was called IBD and Diet. And we analyzed various diets that patients often ask about the, you know, specific carbohydrate diet or the CDED diet, the Crohn's disease exclusion diet. So how we managed to incorporate that in our clinical practice. So we're really looking at the patient as a whole. We also have a social worker that they meet with and you know, addressing some important issues in IBD, including anxiety and depression. So kind of really focusing on a more holistic approach to care in IBD, not just prescribing medical therapies.

SPEAKER_02:

I love that. I love that that program is so holistic and really looking at every aspect of people living with in their disease. So I'm going to back you up a hair because you mentioned, you know, sort of PAs, NPs, nurse practitioners. Some people may not necessarily know what that is. I'm guessing most people probably have encountered a PA or an MP. But would you mind just talking a little bit about how your profession, how the PA profession differs a little bit from like the physician side of things, but how you work together?

SPEAKER_00:

So that is a really good question. So there is a difference. So for a physician assistant, you know, obviously physicians go through, they get their bachelor's, they go do a medical school, which is four years, then they do a residency, you know, whatever specialty they want to do. And more often than not, we're seeing a lot more highly specialized physicians and they do fellowships, whether it's a fellowship in gastroenteralogy, you know, anesthesiology, if you want to, you know, be a surgeon. So there's different programs and specialties that they do. They have a very prolonged uh education. Our physicians are very, very well trained. And I will say this I respect our physicians, and I'm also very clear in that I am not a physician. And I think that's very important when you encounter APPs, is that as wonderful as we are, it's very important to kind of know our place in the team and our relationship with our, you know, physician colleagues. That there are going to be situations where I encounter that I may not understand or I may need a little bit more guidance. And so I never want to go outside of that space that I'm comfortable for a matter of ego. Patient safety and, you know, providing the best patient care is more important to me than my ego or coming up with something that I may not understand. And so I have no problem in telling patients, hey, you know, let me discuss this with my attending and I'll get back to you. And so that also is really important in building trust and rapport for those patients that, exactly, like you said, that may not have experience with a physician assistant or a nurse practitioner. The physician assistant education is different. We do get a bachelor's and there it's a master's. Most programs now are master's programs. When I went to school, it was certific a certificate program, but we have advanced now and there's master's programs. And later I did go and get an online master's through Toro, but now most programs are a master's. And it's a three and a half year program where we kind of mimic the medical school model. We have a didactic session, which is about a year and a half of didactic books, chemistry, basic science, all of that. And then a year and a half of internships or rotations. And, you know, in that you develop your thesis and you have your masters. So our education mimics the kind of the medical school model, but in less time, with the idea that we get exposed to all aspects of medicine and then we get a job. And at that job, we get on hands training and expertise as you go along and get more practice. The nurse practitioner model is a little bit different. I can't speak 100% on them, but they are nurses before they advance their degree to nurse practitioners. It adds a very authentic kind of field to nurse practitioners. They are very patient focused. They kind of uh have a different sort of education, but essentially we at the end of the day, we all do patient care where we can prescribe therapies, order tests and labs, interpret exams, and you know, make appropriate diagnostic evaluations. So we kind of get there in a different way, but we ultimately have the same goal.

SPEAKER_02:

Thank you so much for that explanation. I mean, I know I have definitely seen a nurse practitioner, I've seen a PA, both really fantastic experiences. And I always felt like I was really listened to, which I so it sounds like that's really an important piece of kind of your education is that real like patient-centric aspect of things.

SPEAKER_00:

It's funny you said that because I actually have had several patients who have said to me, like, I really feel like I somebody's listening to me because I do make that effort into listening. Because I, for example, have seen patients that, you know, they have IBD and their IBD is totally in remission, both clinically and endoscopic. They meet all the guidelines, you know, normalization of inflammatory markers, but they're still having six to ten bowel movements a day. So they have diarrhea or whatever. And they have seen gastros for many years who've managed their IBD, but the patient still has diarrhea. So that's when I say, okay, well, that's a totally different thing. We now have to delve into that because, you know, not all diarrhea is inflammatory bowel disease related. And so I'll evaluate them and ask them questions, and they've said to me, you know, which is very nice for me to hear, but at the same time, it kind of gives you an idea that when somebody becomes so focused, sometimes we ignore other things. And she's like, that's like the first time somebody has really listened to me. And so it's it's it's good. It's, I think, a wonderful quality that providers should give their patients, but maybe not all do. So anyway, but yes.

SPEAKER_02:

Well, I think you get that in every profession. There's some people that do it differently than others, and so but I'm it sounds like you you have a great patient care model. Um I am curious a little bit more about the you mentioned the APP training that's been around for eight years. And I I'm sorry, I did not write down the name, and so now it's out of my brain. I think that's super cool. How did that get started? And then is there like, does it have a theme every year? How do you decide what's going to be in the training session? Has it evolved so that you have kind of like newer PA training or APP training and then like people who have been in the field for a little bit longer? Tell me more about this.

SPEAKER_00:

Well, thanks for asking. Yeah, it's something that I'm really proud of that our fellow colleagues have made. There is a conference that is called the Gastro and Hepatology Advanced Practice Provider Conference. And GAP has really grown. We just went through our eighth year or ninth. I just spoke at it and I can't remember which one is which. Basically, it started as a small group of APPs that were realizing that we were not getting the appropriate training in gastroenterology as a whole, because there's a lot of new grads, but there's a big step from graduation to becoming an experienced provider. And while, you know, physicians get a lot more training in that because they have residency and fellowship and a lot of things, you know, physician assistants kind of graduate from their degree and then they move on to patient care. So somebody has to train them. And we were realizing that there was a big deficit in our education in gastroenterology. So there are a lot of founding members, including, I don't know, back then it was Elizabeth Evans that I worked with, Sharon Dudley Brown, who's out of Johns Hopkins. Through my years, I have met such amazing advanced practice providers. And they established this group so that we could teach each other. And that makes a big difference to be taught by each other. There's a lot less, you know, at the end of the day, physicians, you know, they teach themselves in certain ways. And sometimes a lot of, especially new grads, might have more insecurities about asking questions or approaching doctors about certain things. So this conference started basically out of that idea. And I have spoken at multiple conferences and it's set up to where there's a big plenary session. We have committees within GAP. There's educational committees and a lot of different committees that make it happen. So I really want to give a shout out to all of the members because I haven't participated in that aspect, but it is a lot of work. These people put a lot of time of their own to establish the appropriate curriculum and find adequate and experienced speakers that they can contract to really provide that not just education, but experience that they bring to the table. So I have spoken in the past about inflammatory bowel disease, Crohn's disease, ulcerative colitis. I've done a talk on pauchitis, I've done a talk on ostomies, but we also have hepatology, which is a huge field. We have advanced practice providers that specialize in esophageal disorders. And so they look for experts amongst advanced practice providers across the country. And those experts teach other APPs that are interested in learning. And that could vary from new grads. There's a program within GAP that's called IBD Bootcamp. And it's a whole session on all the information IBD. And so I'm extremely proud to be invited as a faculty speaker there. But I won't take the credit because it took a lot of behind the scenes work from a lot of APP pioneers that have really grown this into a program where every year we're seeing more and more advanced practice providers attending. So, and they kept it going through COVID, and they're always coming up with innovative topics to keep us up to date on the most updated information. So I really, you know, want to encourage all APPs to attend that practice in Gastro and, you know, focus on our education a lot more. That's super cool.

SPEAKER_02:

I and I agree with you. I think having you teach each other is such a great way for people to learn. Has this sparked additional change in things like the AGA, like DDWs, so digestive disease week conference or the AGA conferences or any of these other like big conferences that happen? Have you noticed has that also kind of changed how they are handling education or how they're doing things?

SPEAKER_00:

Yes, it really has. Like I said before, there has been an evolution, I think, in the partnership and relationship between physicians and their advanced practice providers. I'm very fortunate. I've always had a very forward-thinking physician, Dr. Nemisha Parek, who always considered me a partner. I didn't work for her. She was always my partner in this. We were partners. But we have seen it. So the ACG as well as the AGA now have committees for and about advanced practice providers. And they're really trying to incorporate us into that system as well, as they realize that we are really on the front lines and we allow physicians to do other things while we're the ones that kind of have a lot more face-to-face time with patients. And so they have recognized it a lot. As a matter of fact, just on a personal note, I was asked to be a part of just this last weekend when I went to GAP, it's called the Milestones APP Lead Conference. And I was invited to be a faculty guest. And it was spearheaded by amazing IBDologists, Anita Aspali, Dr. Ben Cohen, Dr. Christina Ha at the Mayo Clinic, along with Angelina Collins and Amy Stewart, both nurse practitioners in IBD and Gastro. And they basically invited PAs and NPs across the country that are doing IBD and brought them in to teach them leadership skills, teach them how to create a presentation, educate them on other avenues that we can pursue, whether it's in education or speaking, and really kind of bringing home the concept of we really want to work with you and make you just as good in the IBD and gastro field. This is very new, milestones and APP. And so there's always things that are coming out in terms of helping escalate advanced practice providers, not only in IBD, but also in gastroenterology as a whole. So I was really honored to be a part of that. It was an amazing experience. I met such wonderful advanced practice providers from across the country. And we shared our experience. Angelina Collins shared hers, Amy Stewart shared hers. They were leaders in this conference. We spoke to them. We encouraged them to network and how to network, giving them ideas. We got experience from the attending physicians. So it was, it was, it was magical for lack of a better word. And it's going to keep growing. It's just a program that's going to keep growing. And so there's always things that are growing to escalate us as professionals and as providers, which is super exciting.

SPEAKER_02:

You're at an academic center. So does that mean you also at times participate in research, what that's happening within the IBD center?

SPEAKER_00:

So we do, they have a lot of research in IBD. The only thing I'm currently participating in is in a registry study, but we do have a lot of clinical trials. Because I'm in clinic a lot, it kind of deters time for me to participate in clinical research. Medicine is currently very productivity driven, especially for a lot of advanced practice providers, which is a little difficult for somebody who or all of us who are this altruistic kind of we want to help people and be patient advocates. And at the same time, having to really see more and more patients. And you know, so it's kind of a balance that we have to match. And so I have to pick and choose kind of what I do. And so I really focus in on clinical care. But there are other APPs across the country that do a lot of research and have that opportunity within their institutions, community practice PAs as well. But me personally, I, you know, happen to work for an attending that has a lot of other things. And so really relies on me to be there for my patients.

SPEAKER_02:

As somebody, I mean, you are seeing patients all the time. It sounds like this is, you know, you're every single day all the time. At what point do you bring up clinical trials to somebody? Because I know it seems like a lot of people are like, well, nobody, they didn't tell me about it until I was like ran out of options, right? Or I didn't have insurance, or something kind of happens. How do you determine when it's best to bring up a clinical trial to people?

SPEAKER_00:

A lot of it depends on where the patient is at in their stage of the disease process. We do at our academic center bring it up to patients, especially since we have trials that are ongoing. The issue, too, and we also kind of have to decide who we bring it up to because clinical trials are wonderful. But you also have to keep in mind that they have very strict inclusion and exclusion criteria. And so when you get really those complex perianal disease patients or the patient that's had multiple surgeries or have tried and failed more and more biologics, the criteria can be a little bit narrowed. But we do bring it up. Patients ask often, and so we're able to answer that. For example, there was the stem cell research for you know perianal disease and fistulas, which has shown efficacy in patients with more simple fistulas, but they may not qualify because they have very advanced perianal disease. So patients ask, and also based on, you know, when we have trials and when we know of trials, for example, we get notified of other centers that are actively recruiting patients that, you know, with this criteria, and if we have that patient, we may offer it. But then also at the same time, we have to balance the fact of how sick is the patient. Do they need treatment right away? Do they have the time to go to that center, fill out the paperwork, do the consents? So it is a balance. And so we tend to kind of focus when we have people that we're directly working with to offer it a little bit more regularly. But right now, our main goal usually is just how sick they are and how quickly we can get them treated.

SPEAKER_02:

I, you know, and I know the other thing that comes up is you know, it's great to participate in clinical trials, but sometimes it means like more scoping and more visits to the doctor. And so if you're really, really busy, it might not make sense because of just timing of stuff and how, you know, how much more kind of you have to be in the doctor's office potentially. So it's true.

SPEAKER_00:

And I have to say, you know, I just I love my IBD patients. You know, with IBD, there's always there's this what we teach people, it's it's got this bimodal age of distribution. So you kind of have people younger and then they kind of plateauzel and then like in their 50s to 70s, so you kind of have both ranges of the spectrum. So we have a lot of people that are just kind of getting started in life, going to college. We do adults, so most of them are, you know, young adults that have finished high school, but they may be going on to college, they may go on to study abroad, they may do other things. And then I've got my, you know, older population who's retired and now they're doing things, and so they don't really want to get caught up in that because they want to live their life. And going to the doctors is kind of annoying, especially if they're feeling well. So, and lifestyle and how busy people are also affects the choices that we make for medical therapies, which is something that I, you know, should point out, right? We try to pick things that are more convenient for them. Do they want just injectables? Do they want pills? So there's so many things to consider. But yes, when it comes to clinical trials, committing to that can be difficult for people. I can definitely understand that as well.

SPEAKER_02:

So, in in keeping with the therapies thing for a little while, and I want to give the caveat that we're not offering any medical advice on the show at all. So it does seem, and you this is where you correct me when I'm wrong, is it seems like some of the newer medications that are coming up seem to be more effective for some of those really tough cases of like Crohn's disease with fistulas and things like that. Am I right on this? Like I feel like I'm hearing this, but I also don't have Crohn's disease with fistulas. And so I'm curious if you're seeing that some of the newer medications are actually helpful to treat some of these tougher cases of like Crohn's or all stiff cleas.

SPEAKER_00:

So I'll say this. I think what we are seeing more, I'll get to your question, but I think one of the definite things that we are seeing in terms of our options for medical therapy and kind of what a lot of companies. Companies are really focusing on and really publishing is the safety. Patients are more and more and more concerned about the safety profile. And so we are trying to really get more specific therapies to kind of decrease that the side effect and the risks. In terms of data for perianal disease, I'm gonna be honest, it's more difficult to recruit patients for the clinical trials because when they do, that's not part of their inclusion criteria, which is more perianal disease. We have a lot of case reports and we have experience on it, which is published. And there is some data that is coming out. A lot of them are trying to publish data on perianal disease and how it responds because we have so much more experience with the use of the anti-TNFs. So we kind of always do that. But as things, as patients become refractory or it doesn't work anymore, we're starting to utilize these therapies. And yes, we are finding that it has significant efficacy in controlling their perianal disease. So we have new data that's gonna come that has to come. And you know, obviously we're studying that all the time. Perianal disease is complicated. It is a phenotype that is more complicated to treat. And so it's currently there's very small, limited amounts of studies that are done on smaller groups of patients, but definitely they are all showing promising results in the treatment of perianal disease.

SPEAKER_02:

I think one of the issues is you're right, like the research tends to be the folks that are not quite complicated, and you know, because they don't make the cut on clinical trial recruitment. So, but I'm happy to hear that. So understanding that insurance companies make things challenging for you as a provider and also for patients. In an ideal world where that was not the case, you mentioned saying, you know, talking to somebody about their preferences and blah, blah, blah. You have somebody sitting in your chair. Insurance is no matter. You don't have to worry about it. What is the criteria that you talk to with folks about their treatment options and how you sort of help them figure out what's their best one? What would you talk to them about? What you ask them?

SPEAKER_00:

It is a very extensive conversation that I have with them. And I really appreciate you bringing up the issue of insurance companies because it really establishes a very difficult framework with which we have to work in. Because we as providers want to function in that ideal world. And then we get denials all the time, and we always have to justify why we're doing what. But in an ideal world, if I don't have to worry on whether or not they have Medicare, which is a huge inconvenience, or what they have to consider, I ask the patient what their biggest concerns are. So for example, most patients will express the safety profile is super important to me. I don't want anything that could increase, you know, my malignancy or anything like that. I also look at them and say, look, you know, you also have psoriasis and you have arthritis or you have uveitis or, you know, spondylosine ankylitis. So I say to them, look, you know, these therapies work, these may not. We talk about trying to use a drug that can solve all the problems. Another important aspect is their lifestyle. If you have somebody that travels a lot, if you have somebody that travels for work, an infusion every four weeks may not work, every eight weeks may not work because they don't know where they're going to be in their travel schedule. So we may look at something like injectables or oral pills if they have ulcerative colitis. So it's really a conversation that is very individualistic, addressing the goals that are most important for the patient and trying to find the best drug at the same time that can kind of meet not only where they are in their disease, but how to best treat them in it and also accommodate their lifestyle. And also another important thing is pregnancy. A lot of women want to know are these drugs safe? What drugs can I take that are safe during pregnancy? What are drugs that I could take that are safe during breastfeeding? And so we have that conversation as well. It's a very, very individualistic and comprehensive conversation based on all of those things. My experience, safety and convenience are the most important because I think patients kind of have the confidence and assume that the drugs are approved because they work, right? So they don't typically get into the details of, you know, rates of remission at three months versus 52 weeks, you know. And I will tell them, you know, some drugs work quicker than others. If they're super sick, I'm gonna say, look, this is the drug that's gonna help you the most. This is safe, this is not safe during pregnancy. So it's a very extensive conversation and oftentimes more than one conversation. I'll give them a very kind of a basic idea and then we'll bring them back in a week so that they have time to review the medications a lot. You know, IBD patients are very, very smart and they read and they're very inquisitive and they want to know. And they know more than I do. I have one patient who is very into holistic care, and he'll be, Did you read about this vitamin that, you know? And so they want to know, and so they challenge you. So I really encourage them to read on it. Then we'll bring them back and we'll have the conversation all over again, but now with better, more informed questions on the patient's behalf. So it's a great question. And I wish I had like a one size fits all, but that's the beauty of IBD is that one size does not fit all. But again, that eliminates the insurance. If we talk about insurance, it eliminates a lot of other things for certain patients. So it is something we have to include whether we like it or not. And the other thing I do want to bring up, since we're kind of talking a little bit about medicines, is the advent of biosimilars. And that is a whole other layer that we have now because, you know, several of our class of drugs have lost patents, including uh infliximab and adolimimab, and then Eustachinimab or Stellara has now biosimilars as well. So patients are getting letters that their insurance is no longer covering brand name Stellara and they're getting all freaked out, but we really have biosimilars at our disposal. And so we try to comfort them and say, look, we've had experience with these drugs ever since the anti-TNF family, and we're very comfortable in switching these drugs. They have to be, you know, extensively studied in order to get approval by the FDA. They have to meet the same dosing, mechanism of action, efficacy, safety, and adverse events profile, or they wouldn't get this certification. So that adds another layer of conversation because sometimes we may order a drug and they'll the insurance company will say, okay, but we'll do the biosimilar. And so we have to, you know, provide that assurance to the patient that we're comfortable with the drugs. And so therefore they should be too.

SPEAKER_01:

Do you think that the conversation is going to change as we get closer and closer to precision medicine? Because I always think about this, like lifestyle is always a big part of the initial conversation. Because if you're not going to take the meds, then they are not going to work, right? So, like you said, if you're traveling for work, you can't do the infusion every four weeks because you just don't know where you're going to be. But as we get closer to precision medicine, I just think about it like if you tell me that this is the drug based on whatever criteria have been established that has the best chance of working, regardless of the other questions. I don't know. I feel like my lifestyle may have to take a back seat to take in. And let me just say this too, Jeanette. I have a very complex case and a very rare case. So I wasn't one of those people who can say, like, I'm worried about the safety profile. I didn't care about that. Like I wanted to get better and I've had multiple surgeries and, you know, I have a J pouch with Crohn's disease. Like I have a complex case. So I didn't have the luxury of being like, yes, I'm worried about the safety profile of this drug. I was like, I would like to not die, please. But I just think about that that people that do have, and this is gonna sound bad, but what I for me, people that do have the luxury of being able to have the conversation and have options like this. I'm a little bit jealous of you all. But also, do you think that conversation will change as we get closer and closer to precision medicine?

SPEAKER_00:

Oh, absolutely. I totally do. We're already seeing so many changes with, you know, AI and how it's going to affect it. Patients have been asking for a very long time, you know, because that's one of the big issues in IBD right now is why does this person have such a wonderful response to an anti-TNF and this other person didn't? You know, why did this person tolerate Antibio and this person did not? Or so there it's, you know, they're already doing it in terms of, you know, cancer treatments. And so we're kind of a little bit behind the eight ball there. So it is going to make a huge difference. I mean, to know that we could eliminate hopefully that trial and error, which is, you know, you've got to give it a try and then we'll see if it works and plan for that scope in six months to see if we can check for healing, because I don't know if you, your phenotype is going to your genetics will respond to this. So we're very hopeful, just eliminating the trial and error, being able to predict based on markers, how well you'll respond, monitoring outcomes. Even now, you know, there's apps out there in terms of so many different things that you can monitor. So we can use these things in terms of like communicating with your provider in terms of like monitoring tools. So, yes, I'm very hopeful. And that is gonna be super exciting when we do have that at our disposal. And it's gonna, I, you know, the way things are moving, it moves so quickly. It's gonna snowball. And for me, probably it'll be hard for me and my brain to keep up because I'm getting older and like I only have like a limited amount of brain space left, and then I'm gonna have to leave it to the younger. Oh, this is the true thing. Like, I told my boss, like, seriously, how complicated do we have to name these drugs? Seriously, adolimumab, eustakinimab, betalismab, you know, tofacidinib, all these crazy, there's not enough room. I I don't have enough room. So you can imagine with AI, my brain is going to explode. But yeah, if we can use it to not only predict if they'll respond, use it to predict potential flares. You know, they're also studying use of microbiome data. So there's so many things that are being studied, it's it's gonna snowball, and you know, we're just gonna try and keep up. So, but yeah, I'm hopeful that it will because we do have those cases where by the time, so for example, for the for the patients that do become medically refractory, that they do end up needing, for example, ulcerative colitis, a total colectomy with potential J pouch. By the time that patients gotten to the total colectomy, they've already been in this for years, shuffling through therapies because patients want to try everything before they go to that, right? Obviously, I understand that nobody wants to give away their innards, nobody wants their innards removed. You want to do everything you can to keep everything whole. It makes sense, right? And you don't want to be a young person having to go through an awesome lot to deal with psychosocially going through that, you know, just their own vanity, they're growing. There's a lot of things. So if we could eliminate so many years of people being sick before ultimately they either need surgery, that would be a game changer for people. So yeah, looking forward to to that coming out as well. I don't know if I'll be practicing, but I might have to quit. But but yes, yes, it would be fantastic.

SPEAKER_02:

So when you have patients that are having surgery and and they're going to have pieces of their, you know, their small intestine removed and they maybe have to have multiple surgeries, my Crohn's disease friends, you know, have to have multiple surgeries. How are you counseling those people on the potential lack of absorption they're getting because of having less small intestines? I mean, I think we see with our JPouch friends like that, you know, your body can kind of change itself and transform in many miraculous ways. But you're right, at some point, like if you're, you know, you're cutting pieces away, cutting pieces away. As do you start to sort of counsel people to go to a dietitian or do things different or do things nutritionally to kind of compensate for that? Or do you do different labs to check?

SPEAKER_00:

Oh, yes. So definitely for before surgery, we have to have a really in-depth conversation. And a lot of this is also done by the surgeons because sometimes you just don't know how much bowel you're going to have to remove. So the most common surgery, for example, in Crohn's is an ileosecectomy. Well, you might remove some of the small bowel and part of the first part of the colon, but ultimately, you know, they always have to take out the diseased area and a certain amount after. Usually, one surgery, they'll do okay. Patients will typically have a lot of diarrhea initially because of the inflammation. I do have some couple, a couple, not a lot, of patients with short gut, and it's a very, very difficult thing to treat. Nutrition-wise, they have some micronutrient deficiencies. The main thing is just the diarrhea, right? They just have a lot of diarrhea. The good news about the small bowel is that we do have about, you know, 20 feet of it, so about six to eight meters of it. And so let's say you have like 800 centimeters of small bowel. And then in order for you to actually qualify for short gut, you need to have less than 200 centimeters. So you're talking about removing a huge chunk. So it is pretty amazing. But I do counsel them, you are going to have potentially some diarrhea, especially as the inflammation gets better. If it's somebody's second surgery, we always talk about, even with the first, we have to talk about the risk of adhesions because that you may have a wonderful surgery and then have scar tissue down the line that may lead you to susceptible to small bowel obstructions. Short gut is difficult, but you need a, and again, when the surgeon goes in, there may be lesions, there's areas of inflammation that they may not have seen, but typically they can tell, but it's ultimately difficult until the end of the surgery when you have the actual specimen. But even some removal can lead to different symptoms in different patients. So I do counsel them on it, but I will say I had a patient recently that had a lot of small bowel removed through disease, and they're doing quite well of the small intestine. But yes, we definitely monitor vitamins like B12, we monitor iron micronutrients such as magnesium and potassium and phosphorus if they're having diarrhea. And we tell them that this may be a risk, especially in the initial post-op period, and we just have to give it time to see how it ends up. But yes, it's definitely a very difficult conversation to have. The surgeons have it a little bit more who are able to talk a little bit more in detail about how much they suspect they may remove. But ultimately, patients come back to the GI, right? When it comes to them having the diarrhea or, you know, they're not absorbing as well. I have some patients that need ongoing supplements with magnesium infusions because they're losing a lot of magnesium. So it is very difficult. And I have a lot of these patients with this short gut are very, they depend on antidiarrheals to not make them normal, but just to get through the day. And that's really difficult to see as well.

SPEAKER_01:

Thank you so much for answering all of our very detailed and clinical questions.

SPEAKER_00:

I did have one comment. I know that we talked about a little bit, and I don't mean to interrupt, but since we're coming to the end, I do want to bring out something that's been kind of not so new, but maybe patients may or may not know about in IBD and pregnancy. Again, we talked a little bit. Most most of the medicines are very, very safe in both pregnancy and breastfeeding. There is a recommendation that I think women should know about that has been uh published now in our guidelines is that women that become pregnant with IBD have a slightly higher risk of pre-eclampsia and eclampsia. And so now there is a recommendation that women should start low dose aspirin between weeks 12 and 16 and throughout the rest of the pregnancy to kind of decrease that risk. That is one of the newer recommendations, something that they should talk to about with their GYN. And then also just another thing with IBD and pregnancy, which I find, you know, super important because I think that women, you know, want to have babies. And if they don't, that's totally fine. But we do see a lot of voluntary childlessness in women because of the questions that they have about pregnancy and the things that they don't know about pregnancy, and that but just means that they may not be properly educated. IBD women can get pregnant if they choose to. We can talk have conversations about fertility, even women with J pouch if they choose to. There's always the IVF route. Getting pregnant with a J pouch is more of a scarring issue of the pelvic area versus their eggs not being, you know, good. So I encourage patients early on to speak to I speak to my patients about it, but you know, speaking to their GYN because we do refer early on to maternal fetal medicines to have that pre-pregnancy discussion and education. But anyway, I wanted to make sure that they knew about that aspirin recommendation. It's kind of been, you know, rather new for us. And so I want to make sure that they're aware to ask about it and discuss it with their GYN and OB. Yeah, and then the other really important thing that women need to know, and I strongly emphasize is that the recommendation is that women that are thinking about getting pregnant need to be in clinical and endoscopic remission about three to six months prior to conception. That is super important because that will decrease your risk of complications, including low birth weight and preterm delivery that may occur if you happen to get pregnant while you're flaring. So, to optimize the best results during pregnancy, you really should have endoscopic and clinical remission three to six months before conception.

SPEAKER_01:

Thank you so much, Jeanette, for coming on the show and sharing so freely and openly your experience and especially about all the medications and patient care. I know that a lot of our listeners are gonna get a lot out of this episode, but unfortunately, it is time for me to ask you our last question. And that is, what is the one thing you want the IBD community to know?

SPEAKER_00:

I think that the most important thing that I want them to know is it the IBD field is growing so much in terms of therapies, possibilities, treatments. We're really honing in on disease states much better. We're really treating the patient more comprehensively, including diet and kind of a more holistic approach and a very patient-centered approach to patients. And I really want to encourage you to talk to your doctors and APPs about any concerns that you have. I mean, one of the things that is most important to me is that patient-provider relationship and that trust. And you have to have that with your provider and just know that providers they are busy, but you are the most important thing to us. If you were to attend as a patient the conferences that we attend, you would see how much we do care about patients and patient care. So please feel comfortable to ask us about any topic that you may have because the worst thing for an IBD patient or any patient is to not have their questions answered and to not know. Knowing and having that knowledge empowers you as a patient, and you deserve that right. So never be afraid to ask questions. Don't think that you're taking up too much of our time. It is your right to ask questions. It's growing. Now is the best time in the world to have IBD. I mean, it is really amazing. And as a provider, I'm excited to be a part of it as I see the changes and the growth as we have new mechanisms of action on the horizon as well. So quail your anxieties by speaking to providers. Attend these podcasts, go to patient conferences when available. There is a huge community out there, and it really, really, really, really is empowering. One more thing. Join the Crohn's and Colitis Foundation. I have to say, that is our national organization. And there are so many wonderful opportunities and things within the Crohn's and Colitis Foundation. And I'll do one shout out to an amazing thing for any parent with children with IBD. Crohn's Colitus offers this amazing camp called Camp Oasis. It is for children with IBD. And, you know, oftentimes, especially having IBD or any chronic disease can be very, very isolating as an adult. Imagine for a child that just wants a normal childhood, be a part of Crohn's and colitis. There's so many ways that you can, so many things that you can get off their website, so much information and so many activities that would only benefit you as a patient as well.

SPEAKER_02:

That's a great shout-out.

SPEAKER_00:

We love Camp Oasis.

SPEAKER_02:

We're big fans of Camp Oasis. Oh, good over here. So yes, yeah, great shout-out. Thank you. Such great advice. Absolutely love it. So thank you. Thank you, Jeanette, so much for coming to spend the evening with us and sharing all of your wisdom and knowledge. And thank you, everybody else, for listening to the show. And cheers, everybody.

SPEAKER_00:

Thank you guys. Cheers. I'm really excited to have been here. Thank you so much. Hi, this is Jeanette Valone. If you enjoyed this podcast, please share it with all of your friends. Please subscribe and give us a positive rating. Thank you so much.

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