How to Navigate ER Visits and Avoid Fragmented Care With Dr Stephen Lupe — About IBD Podcast Episode 205

How to Navigate ER Visits and Avoid Fragmented Care With Dr Stephen Lupe — About IBD Podcast Episode 205

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Emergency room visits are a source of stress and can lead to fragmented care. Amber speaks with psychologist Dr Stephen Lupe to learn why inflammatory bowel disease (IBD) patients avoid the ER, the reality of medical trauma, and how a multi-disciplinary approach like the IBD Medical Home can revolutionize patient care.

Chapters:

  • [00:02:05] — Dr. Lupe’s Path to IBD Psychology
  • [00:06:21] — Why IBD Patients Go to the Emergency Department
  • [00:09:24] — The Impact of Negative ER Experiences
  • [00:11:54] — Preparing for an Emergency Room Visit
  • [00:14:57] — Coping Strategies While at the Hospital
  • [00:18:31] — How Healthcare Providers Can Help
  • [00:20:42] — The IBD Medical Home Model
  • [00:27:17] — Resources for Patients Without Integrated Care
Sponsored by Johnson & Johnson

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Find Mac Cooney (mix, sound design, and theme music) at:

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Transcript

[Music: IBD Dance Party]

Amber Tresca 00:00:05  I’m Amber Tresca and this is about IBD. I was diagnosed with ulcerative colitis as a teen and had surgery ten years later. Now I help people with Crohn’s disease and ulcerative colitis understand their disease and feel seen on About IBD. You’ll get real talk on symptoms, treatment, and life with IBD straight from patients, caregivers, and experts. You’ll learn, feel less alone, and even have a laugh along the way.

Doctor Steven Lupe is a clinical psychologist and the director of behavioral medicine at the Department of Gastroenterology, Hepatology and nutrition in the Digestive Disease and Surgery Institute at Cleveland Clinic. His clinical and research interests include integrated care, inflammatory bowel disease, irritable bowel syndrome, brain gut microbiome communication, acceptance and commitment therapy, and interdisciplinary treatment team approaches. Doctor Lupe helps patients navigate the intersection of chronic digestive disease, systemic stress, and mental well-being. Doctor Lupe, Welcome to About IBD.

Dr Stephen Lupe 00:01:14  Thank you for having me.

Amber Tresca 00:01:16  It’s really such a pleasure. And I just want to set up the episode. Today we’re discussing the experiences people with IBD have when they’re seeking care in the emergency department, because this can create a situation called fragmented care, which is a term that I wasn’t aware of until a few years ago.

Amber Tresca 00:01:34  So I want to define it for our listeners: fragmented care is when a patient sees different health care providers, but not all the information from those visits gets communicated between those providers. And every patient goes, oh, I’ve experienced that. I just maybe didn’t know it had a name.

Dr Stephen Lupe 00:01:51  Yep.

Amber Tresca 00:01:52  So I want to start at the beginning though, Doctor Lupe, because you have an interesting background. And so I want to ask you how you came to clinical psychology. And you’re interested in IBD and digestive disease.

Dr Stephen Lupe 00:02:05  So it’s kind of this long, wandering, meandering path. I had started my undergraduate was in psychology, and I had started a master’s in psychology in my ex-wife and I had our daughter and I needed to make money, so I became an EMT. And so there were not a whole lot of money in grad school, but, became an EMT. progressed up and became a paramedic. And I was a 911 paramedic in South Florida for about 12 years. Wow. but doing that, one of the things I saw was we would go to these patients homes, and their pantries were full of Coca-Cola Oreos.

Dr Stephen Lupe 00:02:44  There was ashtray overflowing there, maybe beer bottles. There was a stack of medical bills. And I kept thinking to myself, there is no way we are going to out medicate that. And who is working with patients on those things? And so I decided to go back and become a clinical psychologist where I could do more of that work and became a clinical health psychologist specifically. I thought it was going to be a pain psychologist, working predominantly with patients who had pain conditions. And one of the things we saw at the University of Florida, where I was doing my internship and postdoc, was all of the patients with chronic abdominal pain, including all of the patients who had been diagnosed with IBD, were sent down to us. And so I saw a job posting and liked Doctor Ruggiero here a little bit that it was for pain psychologist. I applied for the pain psychology position in about three fourths of the way through the interview. It was like, no, you’re going to build behavioral health inside a GI.

Dr Stephen Lupe 00:03:38  And I said, okeydokey, let’s do this. We started inside the inflammatory bowel disease clinic, and it started that was 2019. I started being in the hallway with my laptop right there. Physician goes in this room, dietician goes in this room, I go in this room and we all switch and we come up with a whole comprehensive treatment plan for those patients. And that was it was very, very successful. So much so that we had to hire a second psychologist. And we’re up to now eight psychologists and they’re all still. And it just keeps growing and growing and growing. Just because patients get better, if we take care of them as whole human beings, and we address all of the concerns that come with living with a chronic condition like inflammatory bowel disease.

Amber Tresca 00:04:25  shocking, right? Shocking that that is the case.

Dr Stephen Lupe 00:04:29  Well, now we’ve even extended out to digital health. We have digital health partner that we’re making sure. Because one of the things that happened when I started doing this, I would go around all these conferences talking to the physicians, and they go, we believe you.

Dr Stephen Lupe 00:04:42  Yes, we need this now. How do I get a health psychologist? And like, if you’re in rural Kansas, I don’t know. And so we had to develop some digital interventions to be able to deliver some of those behavioral health interventions in some of the dietary interventions to patients who just could not get it.

Amber Tresca 00:05:01  Yeah that makes sense. so it was Doctor Romero’s idea. Is that what you’re saying.

Dr Stephen Lupe 00:05:06  Although although I have to he would laugh. He did look at me after I started and he goes my first, review. He was I didn’t know what a health psychologist was when I hired.

Dr Stephen Lupe 00:05:19  That’s very funny.

Amber Tresca 00:05:22  Oh, gosh. Well, his instincts were good. so we will.

Dr Stephen Lupe 00:05:27  We.

Amber Tresca 00:05:28  Will give him some credit on this, I think, you know. So, Yeah. And I saw many of the the. Yeah, I was as I was putting together the information for this episode, I saw some of the little shorts and clips and things that you’ve done from the different conferences that you’ve been to.

Amber Tresca 00:05:43  So, it was really interesting to learn a little bit of how that’s come about and, and how you think about this because I think, well, I think you’re right. So anyway, So one of the things that you’ve written about is, is the emergency department in understanding your background a little bit more. That makes total sense. And IBD patients end up in the emergency department from time to time. And so I’m wondering, what are you seeing or what are you hearing from your colleagues that are some of the more common reasons that people with IBD may end up in the emergency department?

Dr Stephen Lupe 00:06:21  That’s a complicated question, right? Because there’s multiple, multiple reasons. So there’s usually a long treatment history for patients. In most of the patients I talked to do not want to go to the emergency room. And so they’ll tell themselves, let me just wait another day. Let me see if I can get this will get better. Let me see. Right. And it comes to a point where now it is a medical emergency, and there may even be something like a perforated colon or something like that.

Dr Stephen Lupe 00:06:48  And at that point, it is a medical emergency. That person needs emergency care.

Dr Stephen Lupe 00:06:52  Yeah.

Dr Stephen Lupe 00:06:52  The other place that patients end up, though, in the emergency room, and this is more a flaw in our system, is that it is the receiving facility for anything that comes back. So if a patient comes, calls their team even, right. And we can’t get them in in the next week and they’re saying it’s like well go to the emergency room. And that’s a really, really, really hard place. because like I said most patients that we talk to do not want to go to the emergency room. Most emergency rooms are overwhelmed. They don’t want to wait for 12 hours to get in. And then the staff doesn’t know how to care for IBD effectively. And so it can become a very, very hard situation for patients to navigate.

Amber Tresca 00:07:35  Yeah for sure. I actually interviewed a patient recently and the pain from his Crohn’s disease was so significant that his appendix burst and he didn’t it. It really was all part of the same thing.

Amber Tresca 00:07:52  Like he didn’t distinguish it. It was literally like someone who was with him noticed that he immediately like his demeanor immediately changed. And they were like, I think it’s time that we go to the emergency room. And that’s what they ended up doing. But but to to think that that’s the type of pain that people are dealing with at home simply to avoid the emergency room is it’s really it’s really striking.

Dr Stephen Lupe 00:08:18  It it.

Dr Stephen Lupe 00:08:19  Really is. And, you know, that’s one of the things I even work with patients on is how do we advocate for ourselves, and how do we tell the teams that this is going on? but because it, it is hard when it gets to that point, right where there is now something really going on, there’s a bowel obstruction, there’s, you know, and we’re at the point where we need to figure out a way, as a system with patients to be able to intervene earlier so that we can help them sooner. and I think the emergency rooms, to their credit, are trying to work on this.

Dr Stephen Lupe 00:08:54  I have had conversations with emergency room physicians about what do we do when a patient with Crohn’s disease comes in, and making sure that the staff is educated and stuff, and it’s not like one of those things like, well, of course you hurt your view of Crohn’s disease. because that’s just dismissing patients. And most of our, most of the patients we work with, they know their bodies very, very well. Yeah. and they, you know, they have a pain tolerance and they’re not there if they don’t need to be.

Dr Stephen Lupe 00:09:24  yeah.

Amber Tresca 00:09:24  It’s something that I say all the time. so, as we know, as you were just describing, the emergency department isn’t always the best place to deal with IBD. And, that doesn’t that really is not a reflection or a broad statement about, people that work in those spaces, because how could you possibly know everything about everything? You know, IBD is difficult even for gastroenterologists that are trained in it.

Dr Stephen Lupe 00:09:51  Absolutely.

Amber Tresca 00:09:51  But as a consequence, sometimes people have negative experiences.

Amber Tresca 00:09:55  That’s why they may not want to go back to the emergency room. so what are some of the things that you’re hearing that people are affected, that their mental health may take a hit when they end up going to the emergency room?

Dr Stephen Lupe 00:10:12  So we’re starting to talk about this more to this idea of, like, medical trauma. So there was some research that was put out by, Tiffany Taff and a group of psychologists a couple years ago that they were looking at trauma symptoms for patients who had been diagnosed with IBD, and it was only 10% of the population. They looked that they had no trauma symptoms whatsoever. So that meant 90% of the patients who had been diagnosed with IBD had some form of trauma. And that’s not that’s not specifically medical trauma. But we know medical trauma is just as bad. And so you’re looking at that going. So now this patient has this piece where they’re trying to avoid care. Like I’m saying, they’re trying to avoid going to these places. And that’s that’s a big problem.

Dr Stephen Lupe 00:10:57  it increases anxiety around, you know, symptoms. Is this going to be do I have to go to the emergency room? And that in turn puts pressure on the brain, which then starts over detecting the body. and so there’s all kinds of problems that come out of this.

Amber Tresca 00:11:13  Yeah, yeah. First of all, Doctor Taft, friend of the show, she was one of my first interviews. So thank you for bringing that up. I’ll have to make sure that I link back to that episode and that and link out to that research as well, because it was so it was it was one of those things where those of us that live with an IBD were like, yeah, well, kind of like, yeah, but having the numbers around it, I think was really just so validating to so many of us.

Dr Stephen Lupe 00:11:41  Yeah.

Dr Stephen Lupe 00:11:42  Doctor Taft’s a good friend of mine. So.

Amber Tresca 00:11:44  Oh, amazing. Amazing. I do enjoy her very much. so as you were also saying, one of the.

Amber Tresca 00:11:54  I don’t know, is it a is it a blessing or a curse? People with IBD will power through just about anything. and we don’t want people with IBD to do that, though. We want people to go and get care. So do you have any advice? Does somebody realizes that they’re at the point where they do need to go to the emergency room? All right. It’s time. How can I prepare myself for that?

Dr Stephen Lupe 00:12:18  That’s a you know, one of the things that we do a lot of work in is even getting the switch over to. Right, because when we go and we have this total focus on the things I’m trying to avoid. I don’t want the team to think I’m a drug seeker. I don’t want the team to think I’m, you know, whiny. I don’t want the team to think I’m exaggerating, I don’t. And it’s like time out. Let’s work on that for a second. What are we trying to get out of this situation? Why would you have to go to the emergency room in the first place? right? Let’s get the focus back on your care and your well-being and your health.

Dr Stephen Lupe 00:12:51  And then it becomes, am I willing to even tolerate some of that to get the care I need? Because I have some important things I need to do in my life, and I need to take care of my gut as part of that. and the disease I’ve been diagnosed with. As part of that, I have to manage that. And this is part of that journey. And I would suggest, you know, if somebody has gone through this and they’ve got they’ve been through multiple bad experiences. They are noticing that anxiety when they it does come time where they have to go to the emergency room to really, you know, that those are also signs that may be a good idea to talk to someone, like myself or even a therapist within your local community, to try to work on what are some strategies I can do? Because this is not an optional thing, right? This is part of care. I wish there was a better way to do it, but this is part of the care we got.

Dr Stephen Lupe 00:13:46  And we need to help make sure, like you said, that we’re trying to do that sooner and sooner and sooner and advocate for ourselves because we want to avoid some of those downstream complications.

Amber Tresca 00:13:58  Yeah. And you make a valid point in something that I think about a lot in that we, we can identify places where we want to change the healthcare system and where we want to improve things, but we are also functioning within the system that we currently have. And so we have to hold those two things and prepare ourselves for potential negative experiences until we get to the point where things improve.

Dr Stephen Lupe 00:14:21  Yeah. Well, and, you know, the medical system moves changes slowly. And that’s a good thing and a bad thing right. I mean it means that we’re looking at the data when it comes to treatment and really making sure there’s a strong data set that your data there to justify changing treatments and it’s culture shift and everything else that we’re working on currently with even what we’re talking about, the emergency room and how do we do culture shift around this, educate those providers better so that they know what to do for the for patients when they come in?

Amber Tresca 00:14:56  Exactly.

Amber Tresca 00:14:57  Okay. Say somebody has decided they’re going to the emergency room. What about while they’re there or maybe directly after? Are there things that they can do to help themselves to sort of, I don’t know, feel calmer or I mean even advocate for themselves?

Dr Stephen Lupe 00:15:18  Sure. Well, as far as feeling calmer, I always tell all the patients, right, when you’re in the hospital, that’s a great time to start doing some like practices for relaxation and stuff. You can download calm, you can download headspace for free and start or not headspace Insight Timer for free and start doing something to listen to your favorite music. The hospital is a great place for distraction. Normally I don’t preach Distraction, but that is a wonderful place for distraction. And the other part of the. You’re talking about the advocacy piece we have to see when we’re predicting outcomes beforehand. Right. And be able to step into that spot and say, this is what I need. And that is a hard spot to be because we’re all kind of trained from like the time we’re little that like, doctors know everything and they’re kind of like the guy.

Dr Stephen Lupe 00:16:07  The people that take care of us. Yeah. And so it is hard when we’re not getting the answers we need or we don’t feel the team to like is hearing us to kind of be like, I need you to hear me. This is what’s happening in my body, and this is not right. I always tell our patients they are the experts of them. They live in their body 24 over seven and know what is normal and what is not normal. And it is okay to tell the teams when something is not normal. There is an understanding here, and I think we need to do a better job at communicating this to that. Sometimes the things we feel are not findable by our test as well. But it is always better to rule out those things and make sure, like you are saying with the person you were talking about, that there isn’t something major going on, like your appendix is burst. I mean, or that there’s a small bowel obstruction or any number of things that can come up when you have been diagnosed with Crohn’s disease or all sort of colitis.

Dr Stephen Lupe 00:17:06  And this and I think that that’s important when you see that go. What are the things I can do here to help with that and help my body and take care of me in this moment. And sometimes that is advocating for myself.

[Music: About IBD Transition]

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[Music: About IBD Transition]

Amber Tresca 00:18:31  Doctor Lupe every IBD patient already knows this because we encounter healthcare providers who haven’t been trained in IBD And especially where resources are scarce. Like you were saying, sometimes in rural places or places that are like really far from an IBD center like Cleveland. So I’m wondering, from the perspective of your colleagues, what are some of the things that they’re doing or that they can do to help protect the mental health of IBD patients or help them through a stressful situation, like an emergency room visit?

Dr Stephen Lupe 00:19:11  Well, I think first thing is getting the teams to acknowledge that psychological stress is part of this, right, in that it is normal for things to show up like tears and whatnot. It does not mean this person’s depressed. It does not mean they have anxiety. It means they’re going through a hard time. and we do a lot of education around that, trying to teach providers even that, you know, these are parts of this journey and even if this person has been diagnosed with anxiety and stuff.

Dr Stephen Lupe 00:19:40  That may not be what’s going on now. And yes, even if it is part of what’s going on now, it’s probably not the whole question. The whole thing. Yeah. And so we really have to take into account the person that’s sitting across from us. Right. What does this what does this person need? What are they telling me? And listening to it in a very, you know. One of the other things we push for is trauma informed care that our patients who have been navigating a illness like IBD for any time. Most of them, like we said before, have some trauma in the background and we have to be sensitive to that, that we are going to step on that as a team and we have to be prepared for it. And we have to know, and it’s okay to even ask the person, are you doing okay? Right. Are providers even be able to have those conversations? I’m also trying to give the patient, ask the patient what has worked for them, what you know.

Dr Stephen Lupe 00:20:34  The more control we give patients, the better they can navigate this. from, from the provider side.

Amber Tresca 00:20:42  Yeah. That makes so much sense. so you are working on some of these things, within the IBD medical home that you have at Cleveland Clinic. And so this is a model that it integrates behavioral health directly into gastroenterology. And I think a lot of IBD patients have never heard of this. but now all of their ears are perking up. So I’m wondering if you can talk about the IBD medical home and tell us some of the basics and how it works?

Dr Stephen Lupe 00:21:13  Sure. It was a model that was actually developed in pediatrics. imagine that PEDs was better like taking care of people than the adult world. and it was the medical home model is kind of this all services under one roof thing. And we all work as a team. And so as people would come in, they’d see the gastroenterologist, they’d see the psychologist. They see the dietician. eventually that will grow. And it is growing to include other disciplines, like a radiologist even.

Dr Stephen Lupe 00:21:44  we’re very close with our rheumatology colleagues, stuff like that. So we can communicate directly with each other. And we all are there surrounding the patient, and we all are a resource for the patient. And you may not need one of those resources too, right? Let’s say like a patient meets with me and we’re like, actually, you’re doing really, really great right now. Don’t worry. I’m always here. I’m in the background. If you if something does change and we can work through it, we can talk about it. We can. You know, there’s a lot of different stages as someone to navigate, IBD. And so if you’re not in a place for that, that’s fine. We’ll work on it when we get there and we’ll work on how do we optimize the body to make it so that it has the best chance of responding to the medications. But one of the advantages of this model rate is there’s so many touchpoints, with patience that they have with us, that we can all kind of pick up on stuff early as well.

Dr Stephen Lupe 00:22:42  And this is even being extended out further, like I said, with the digital health stuff. So patients are logging their symptoms at home even when they’re not seeing us. And that team can communicate directly back with us. But, yep. It’s it’s not uncommon for me to hear from a patient. They come in, they go. You know what? Doctor. Lupe, I’m really, really starting to experience some fatigue. I just can’t get out of bed. I’ve got, like, I can’t think. I’ve got brain fog, and I just feel like £1,000. And I may shoot a letter, a note over. Well, I’m talking to that patient, to the primary gastroenterologist going, hey, can we draw an iron? Can we get B12? Can we get vitamin D to make sure that it is not one of those things first, and then I will work with them on what do we do from a behavioral standpoint? What do we do from a dietary standpoint? Our dietitian colleagues, I always joke with them that they’re my boss.

Dr Stephen Lupe 00:23:35  They have to tell me what I’m doing before I can work with patients. On how do we expand diet? How do we work with fears around food? How do we work through frank trauma around food? Sometimes, yeah. and we just have to treat this as a whole person thing. And like I said, eventually I think we’re going to even move into the place where pelvic floor PT gets moved directly into the medical home. Our surgeons are within the medical home, too. I’m a big fan of people meeting the surgeon early, even if they don’t need them, so that you see that they’re not a scary person hiding in the corner with a knife.

Amber Tresca 00:24:13  Yeah.

Dr Stephen Lupe 00:24:13  Make that joke to my surgeon friends all the time. Yeah. and so in this model keeps expanding. We’ve actually even expanded. We’re getting ready to start our perioperative medical homes so that patients who do have to have surgery, they’ll be screened by psychology, a nurse practitioner, a dietician prior to even surgery will do an educational class, and then we can find the people that we need to work more one on one and get resources mobilized before the patient ever comes in.

Dr Stephen Lupe 00:24:41  Make sure that psychiatry is involved so that, you know, we can get you medications to make this visit as easy as possible. The hospitalization as easy as possible. If someone needs pastoral care, let’s get that moving. Let’s get arts and medicine moving. we even have, like, therapy dogs. And it’s like, yes, let’s get the therapy dogs in there. Everybody needs a golden retriever. Yeah. right. And I think when we surround a patient and we look at it that way and the team communicates with each other, that’s another huge piece, right? I have no problem walking into any of my gastro entomologist colleagues offices and going, hey, can I talk to you for a second? This is what I think is going on and this is what I think needs to happen. What do you think? Right. We work like that. It’s just much more effective. And patients feel much more heard. In. We can work off each other’s strengths and weaknesses as providers, right? Where if, like maybe one of the gastroenterologists or a surgeon has to go in and give some hard news, I can go in then and help process this and figure out what’s going on, which is another piece of education.

Dr Stephen Lupe 00:25:48  I had to educate some of my friends who are surgeons. It doesn’t work to just chase people into a corner and tell them you’re going to die. If you don’t have surgery, we have to talk to the patient and figure out why they want to do this. and makes space. So but that’s again that’s another one of those things like you know you’re playing off the strengths of all the team members. and making sure this person is treated as a whole human being as opposed to just a set of intestines that are walking around in the world.

Amber Tresca 00:26:16  Yeah. And, you know, that’s something that comes up often on this show. And when I attend medical conferences, it is something that whenever I am, giving the patient voice, that is something that I, remind folks of is that asking us how many times we go to the bathroom every day isn’t the beginning and the end of everything.

Dr Stephen Lupe 00:26:37  So yeah, and we should be doing you know, we released a consensus statement a couple of years ago. I was one of the authors on the consensus statement through the Chrome Colitis Foundation, talking about how we should spend more time asking patients about, you know, psychological symptoms, psychological history, psychological, especially trauma.

Dr Stephen Lupe 00:26:56  A lot of our exams are pretty invasive. And if you haven’t asked about trauma history, there’s a good chance you may step on it in. Patient may have a very bad reaction, and that’s going to lead them to try to avoid care, not want to come in and have more anxiety. Yeah. And so there’s all of these things in there that benefit from working as a team.

Amber Tresca 00:27:17  I love it. Yeah. Great explanation. Thank you so much for taking me through that. And so of course IBD patients are you know, like I said, ears are picking up, as they’re listening to this because it sounds like a dream come true. As we wait for more centers to put in this kind of, 360 care, we have to work within the system that we have. Thankfully, we do have telehealth. I think in a lot of places for people to access a dietitian or a therapist or a psychologist. So what are some of the other resources that you might suggest for people who, you know don’t have this high touch, one on one care necessarily, with a health care provider with a mental health care provider?

Dr Stephen Lupe 00:28:06  Sure.

Dr Stephen Lupe 00:28:07  Your team is a great resource, so make sure you know you ask your team if you feel you have a need for things. We may have to ask for it in those places that it’s not one of the, you know, pieces of advice I always give to the teams and this is throughout the country, is even if you don’t have a psychologist, if there’s a therapist locally or something, and you can form a bidirectional relationship. I will refer to you and let’s talk a little bit about what this disease event is. So the therapist has some understanding of what’s going on. that’s there. Like I said, there’s several digital health things that are coming out to make sure that we can connect patients with some behavioral health care in, dietary care. my voice is on the one that we helped co-develop. and there’s, you know, the Crohn’s and Colitis Foundation has wonderful resources. They have, vetted peer support groups, which most people don’t know, that that exists, along with, like, all the different resources, like the Can’t Wait app and all that stuff.

Dr Stephen Lupe 00:29:12  in those are so validating to a lot of patients. I think a lot of patients, you know, I wish they’d go that way. A lot of our patients ended up going through like Facebook and social media and a lot of and those are those are not bad resources, but they’re not monitored in a lot of times. You know, you just get on these threads that are just the worst, worst, worst, worst, worst case scenario. And it can make anxiety much worse. about the condition. And so I think that, you know, trying to stick over to some of those more vetted resources. Right. can be helpful. I know the Chronicle Foundation even has, like, a peer mentor type program. I have some patients who are mentors in that, who, you know, those are great things to have someone that you can call or text or message and go, hey, I’m experiencing this. Have you ever experienced anything like this? Or I’m frustrated. They just told me they’re switching me to a biosimilar instead of my medication, and I.

Dr Stephen Lupe 00:30:16  What do I do? Right. and I think that those there’s lots of resources there for what do we do, including, you know, they even have some of the, like, appeals, letters already drafted for some providers and stuff like that to help with that, which is so unfair. I wish we didn’t live in a world where the patient has to show up with those resources for their gastroenterologist, but like you said, not all gastroenterologists are IBD experts, and they may be doing the best they can. but don’t fully understand how to navigate this whole system and don’t have a room full of resources like, you know, medication navigators and stuff like that, like we do.

Amber Tresca 00:30:59  For sure. And social media is a wonderful tool for connecting with patients and for discovering community. But as I often remind people, sometimes what you are going to see on the internet is the worst case scenario. Like, I know I live with a pouch. I know a lot of patients who live with pouches. It is not anything that they ever discuss because they’re out there doing great and they’re out living their life.

Amber Tresca 00:31:23  So it’s only the folks that have had a really difficult time of it that are actually in the support groups looking for help. So it gives a little bit of a skewed perspective of, you know, post-surgical, for instance.

Dr Stephen Lupe 00:31:36  It it does. And that’s one of the reasons like I like those monitored like more support groups just because instead of it becoming one of those like this just terrible, terrible, terrible. It’s also like then what can we do about this, right? How do we live our lives even if this is going on? there’s there’s something that I end up, you know, eventually saying to all of our patients as we like, work with them. It’s like, do you have IBD or does IBD have you? And we’ve got to switch that equation over a lot of times, because it’s very easily being human beings in the way we learn and the way our brain works for IBD to have us. And I don’t want to leave. I just want safety. and you know, that can create some problems.

Amber Tresca 00:32:23  Yeah for sure. so Doctor Lupe, thank you so much for all of your time and taking me through everything. is there anywhere you want to send people anything you have online, any resources or anything else you want to talk about?

Dr Stephen Lupe 00:32:38  the resources we have. So, like I said, I always tell people, start with the Crohn’s and Colitis Foundation. Go there. it’s amazing how many patients who have been diagnosed with IBD have not looked at any of the resources there. you know, there’s a couple digital health apps out there. The one we that we’ve partnered with is called able ably. health. I know that Oshie was doing some stuff there as well. There’s several of them out there to try to connect people and improve access to, make sure that there are some resources for patients as far as behavioral, psychological, brain, gut type connection and how that influences, the course of, you know, treatment and life when someone’s been diagnosed with IBD and, you know, and I think, you know, even the major health systems like the Cleveland Clinic, Mayo have great information for patients.

Dr Stephen Lupe 00:33:37  And you can even pick up lots of information about diet and some of the lifestyle factors around, living with IBD.

[Music: IBD Dance Party]

Amber Tresca 00:33:47  Perfect. I’ll make sure that I put links to all those resources in the show notes. people shouldn’t sleep on my show notes because they’re usually pretty good, especially after talking with somebody that is as knowledgeable as you are. Doctor Lupe, thank you so much for talking with me today. I really appreciate your time and even more than that, I appreciate you dedicating your life’s work to helping people with IBD. It really is so impactful.

Dr Stephen Lupe 00:34:14  Yeah, it’s my honor. This is you know, I love my job. I love what I do, I love our patients. And so this is great. Thank you for having me.

Amber Tresca 00:34:29  Hey super listener, check the show notes to find links and information about the topics discussed in this episode. Plus get a written transcript and much more on my website About IBD. If you enjoyed this episode, please consider sharing it with someone else or leaving a rating in your podcast app.

Amber Tresca 00:34:47  Reviews and ratings help me grow this show and bring you more great content. Thanks for listening and remember, until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio. 

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