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
Meet Dr. Christina Jagielski!
When you're battling inflammatory bowel disease, the wounds aren't always visible. Beyond the physical symptoms lies a reality many patients face but few discuss openly – the psychological impact of medical trauma.
Dr. Christina Jagielski, clinical health psychologist at Michigan Medicine, brings her expertise to this powerful conversation about trauma-informed care in the IBD community. With surprising candor, she reveals how she discovered that approximately half of gastroenterologists avoid screening for trauma history – not because they don't care, but because they feel unprepared to respond appropriately to what patients might share.
Through Robin's emotional personal story of emergency room panic attacks and medical gaslighting, we witness firsthand how past medical experiences shape current healthcare interactions. The conversation dives deep into practical strategies for both patients and providers: how to communicate triggers without reliving trauma, why certain medical settings feel unsafe, and what small changes can make enormous differences in patient comfort.
Dr. Jagielski challenges the longstanding approach of selective trauma screening based on gender or diagnosis, advocating instead for universal trauma-informed care. "People living with IBD are so much more than their labs and test results," she reminds us, emphasizing that acknowledging patients' lived experiences is just as crucial as treating their physical symptoms.
Whether you're a patient who's experienced medical trauma, a healthcare provider seeking to create safer spaces, or someone supporting a loved one with IBD, this episode offers transformative insights into healing the hidden psychological wounds of chronic illness. Listen now to start breaking down the barriers between physical and psychological care in the IBD journey.
Links:
- Dr. Christina Jagielski
- "Had a Traumatic Medical Experience? Don't Ignore it"- article in Psychology Today by Dr. Tiffany Taft
- Journal Article on Medical Gaslighting- Dr. Jagielski, Dr. Taft, and Dr. Fuss
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Hi, I'm Alicia and I'm Robin, and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD. Serve on the rocks this week. My internet failed and so Robin flew solo interviewing Dr Christina Jagielski. Dr Jagielski is a clinical health psychologist in the Division of Gastroenterology and Hepatology at Michigan Medicine. She has a particular interest in working with patients with inflammatory bowel disease, as well as patients with a history of trauma and creative individuals. Robin talked to her all about medical trauma, medical gaslighting and trauma-informed care. So just a trigger warning for folks that we do go in depth on these specific topics and so if you've experienced medical trauma or gaslighting, you may want to take care if you're listening to this episode. But we know you'll learn so much and you will love hearing from Christina just as much as Robin enjoyed talking to her. So cheers.
Speaker 2:Hi everybody, welcome to Bow Moments. This is Robin and I am flying solo tonight. Alicia was not able to join me, but that is okay, because I am very excited about the conversation that I am about to share with you and I am so excited to be joined by Dr Christina Jutkowski. Can I call you Christina? For the rest, absolutely, please do. Thank you so much. Welcome to the show. I'm so excited about this conversation. As I've already said, my first very unprofessional question is what are you drinking?
Speaker 3:It's a very important question. So tonight I'm a little sleep deprived so I just brewed up a fresh pot of black coffee. So nothing too exciting, but very much helpful.
Speaker 2:Yes, it is often what I am drinking on the show and actually you said you've listened to several episodes so you know that I usually have multiple beverages. But tonight I am also being very conservative and I'm just drinking water. I am back on that methotrexate chain, so I am staying away from adult beverages at the time. But welcome to the show. Cheers, Cheers. Okay. Now my second question, a little bit more professional. What is your connection to the IBD community?
Speaker 3:Sure, so I am someone who really became connected to the IBD community really through my work as a GI psychologist. I didn't really know anyone or have any family members with IBD growing up, but now I would say about 40% of the people that I work with in my clinic have IBD, so I've gotten to know them very well over the past seven years.
Speaker 2:And what drew you to GI psychology so that is a little more complex answer.
Speaker 3:I would say I am not someone who started off planning to be a psychologist. In fact, from the age of eight I planned to be a pediatric oncology nurse and I was a very stubborn child and you could not even get me to consider another career path from about the age of eight until I was actually in nursing school. And so I, you know I continued on that path. I was in about the middle of my nursing training when I realized this just really isn't right for me. I realized that I loved patients. I've loved healthcare since I was a kid. I had some health issues when I was a kid that required some early surgeries and hospitalizations. That's kind of what got me into healthcare in the first place and nursing. But then what I realized is that I loved being with the patients. I loved spending time with them.
Speaker 3:The best rotation I did in nursing school ended up being my psychiatric nurse rotation. Not what I expected at all. I was so excited for oncology but actually I never got to oncology. But my psychiatric nurse rotation just really kind of changed my life really. I was actually doing my nursing rotation in psychiatry at a stress care unit on 9-11. So, yeah, so it was quite a way to you know, and that was really my second week, second week on the rotation, and so I remember that I was. I won't, I won't. You remember that. I don't want to bring up too many memories for folks, but I was sitting there about to give someone their medications when I first got the news and everything changed. Everything changed, and so I really grew to respect so much the team there, the way that they handled that, the way all the TVs were turned off and they just really focused on supporting each other.
Speaker 3:And I'd like to say that I knew right then that I was going to be a psychologist, but I didn't. I was still trying to make nursing work. I was so committed to this dream that I had had as a kid, ended up leaving nursing school and transitioning into public health, which ended up being a wonderful fit. It was again another career that I didn't even know existed at the time, much like GI psychology, and ended up thriving in that. I really love public health as a whole. I really like the way that, you know, public health looks at the whole person, not just from, you know, a disease state, but really, really looking at occupational health, spiritual well-being, social well-being and all the different ways that public health really views health in a much more complex manner.
Speaker 3:And then it was through one of my pieces of research I was doing there that I started tapping into some psychology theories related to stress and coping and I started trying to apply that again to oncology, because I was still very committed to oncology at the time. But it was actually one of my friends who said have you thought about being a psychologist? And it had never occurred to me and I had always been kind of very psychologically minded. I had been other people's kind of unofficial therapist my whole life but never thought, you know. So then actually after that conversation it just sparked something and after that day that was, you know, I kind of knew that that was where I was headed. I still planned to maybe move in the psych oncology realm, but we're finally finally getting to GI here. You're good.
Speaker 3:So I first discovered that the field of GI psychology which I realized from listening to previous interviews on this podcast many others have mentioned this is a relatively new field. So really if I had wanted to go into GI psychology at the time it might have been quite hard to do so. But when I was applying to grad schools, this would have been around 2012 or 2011. One of the things you do is you need to look for a mentor that you can fit with, to do research with as part of the program. That's kind of what helps you match with a program. And I discovered the work of Dr Lori Kiefer, who is, you know, often described as the godmother of GI psychology, and I just I found her work and I was just very just riveted by the connections between the brain and the GI tract, the type of therapeutic support that can be incorporated, and it was one of those things that just clicked and I realized incorporated. And it was one of those things that just clicked and I realized this is what I want, didn't end up kind of going directly into GI psychology.
Speaker 3:I kind of I ended up doing my training at the University of Alabama, at Birmingham, and I kind of more of a broad health psychology experience working with sleep, and I did some work in palliative care. I did do an oncology rotation finally, and a host of you know kind of broad health psychology first, and then I finally I kept asking the whole time I was there can I create a psychology or GI psychology pathway, and there was just never a way. And so the whole time through grad school I just kept asking, like how can I get to GI psychology? And so finally, when I was interviewing for psychology internships which is the last year of the PhD program is you do a full year rotation for full year internship at another site, usually outside of the state that you are, or at least outside of the program that you are, or at least outside of the program that you are in. And so I was.
Speaker 3:Throughout my interview process, I really wanted the experience of creating a program.
Speaker 3:I was really interested in program development and specifically I wanted to create a GI psychology program because I couldn't find one anywhere else.
Speaker 3:And so I ended up interviewing at University of Chicago Medicine and they were the only place where, when I asked about program development, they got excited and they were like, oh, actually we have a rotation that's specific to that and also we have some gastroenterologists that are really excited about GI psychology, because obviously Northwestern is so close by and they were very aware of that.
Speaker 3:And so that's where I ended up going and so I got to get involved with the development of that program there. The first part of that was really the business end of things really learning how to like create a program and materials and like not a lot of exciting stuff but valuable information. And then I finally really, towards the end, got to start working with patients themselves and that was my first really real opportunity to work with IBD patients, because I had several IBD patients both in that clinic and also in my outpatient clinic and then I just loved working with them ever since, and so when I came to the University of Michigan, I was actually their first GI psychology fellow. So I had the opportunity to work with Dr Megan Real and she kind of created this program or created the fellowship and joined the faculty in 2019.
Speaker 2:And I've been, for a sense, First I have to say thank you for your persistence, honestly, with it being such a new field and so few people there, as somebody who's lived with IBD for 25 years. We need that specialization and without people like you and Megan Dr Reel, who are willing to do the work, create the programs, advocate for the necessity for it, it wouldn't be a growing field, a field that people are aware of now and understand that it is an actual job you can do so. Thank you for your persistence. I appreciate that. There's so many questions I could ask just based on that. So thank you for sharing everything with me. And also, I'm sorry.
Speaker 2:Oncology Too bad, so sad to oncology Everybody listening to this story. You know that you don't have to know what you want to do when you're 19 or 20 years old. It is a path, it is a journey and you will eventually end up where you should be. That was very inspiring to me. Now that you are at the University of Michigan, you've done your fellowship, you accepted a staff position. Part of your work is research. You did a little bit of research in RFID and then with other people supporting other PIs, and now you do your own research. So do you mind, if we like, just dive right in, Because I'm very excited to talk to you about your research.
Speaker 3:I'm always very excited to talk about my research too. I'm very passionate about it. So, absolutely, where would you like to start with that?
Speaker 2:How did you decide to choose trauma-informed care to research?
Speaker 3:Very good question, because it was again not what I planned. So I yeah, this is a if there's one, you know, one take-home point, kind of outside of IBD, I would say for anybody that's listening, is that it is absolutely okay to change course. I have done it many times and I think listen to yourself, listen to yourself. If the path that you were so certain was right starts not feeling right, just listen, because a lot of times that'll guide you to something that's really good for you.
Speaker 3:So, coming into the postdocs, it was a clinical postdoc so there wasn't a lot of expectations in terms of research productivity, but they did want me to at least be able to have some sort of research product to come into, and so I was really interested in sleep research at the time still am, so I still very much love sleep-related research, and so that was what I initially was interested in doing as part of the fellowship. So Dr Real had really built in this nice like three-week window at the start of the fellowship where I wasn't going to be seeing patients yet and I was going to have an opportunity to kind of get to know the division, shadow you know providers pretty much every day, get to see them in clinic and kind of get a better sense of the patient experience there, and that was really what informed this research decision. So as part of shadowing you know, when I wasn't, when they weren't with a patient, I would often just ask questions, questions, and one of the questions that I asked was you know, I'm very aware that there is a higher prevalence of many types of trauma in the GI population. I'm wondering how do you, as a provider, address trauma or how do you decide when to assess for trauma? And pretty much across the board, the answer that I heard pretty consistently was we don't. And these you know and I will say up front, these are all very good physicians, these are all people that I have tremendous respect for. But their answer pretty consistently across all of the providers that I spoke to was we were kind of raised or taught coming up in medical school and our medical training that if you don't know how to handle the information a patient shares about trauma, you can make things worse, and so it is better to not say anything at all. And it's not because we don't think it's important, it's not that we don't realize that this is an issue, but we were never given any training on how to handle all of this, and so we don't want to make things worse and so I tend to, you know, not say anything. And so you know I sat there listening and you know I'm also sitting there as a fellow right, so I'm kind of like a newbie, you know, very low on the totem pole. And I remember coming back and talking to Dr Real and saying I understand the perspective they're coming back with, but I just truly do not believe that's good enough. I don't believe that that is optimal medical care. And also those providers didn't think that was either to their credit. They also did not feel like it was optimal, but they didn't know what else to do. And so that is what led me into an interest in trauma-informed care and GI in terms of where the research was at the time.
Speaker 3:So we've had quite a bit of research since the 90s. Doug Drostman did some of the first studies on this in the 90s, looking at prevalence of trauma in the GI setting. A lot of that was looking, more so, at the role trauma can play in the development of various types of GI symptoms. You, more so, saw that research in the IBS population so that you would see that, and so that was the focus then. It was more so that, hey, we're seeing this connection, this might be a contributor to some GI symptoms, and that's, you know, a very valuable part of the research.
Speaker 3:There wasn't a lot of research on one.
Speaker 3:Okay, we have this information, what do we do about it?
Speaker 3:Like, how does this change practice?
Speaker 3:But also the fact that anyone who's ever been to see a gastroenterologist, anyone who's ever had a physical exam, rectal exam, any of the other sensitive procedures that are done in GI, can know that even you know, even if you didn't have a prior history of trauma, coming into this setting, if not handled properly, could be traumatic or just, at the very least, very stressful and anxiety provoking.
Speaker 3:And so that kind of you know really got me interested in understanding how can we better look at trauma? What can we do to help make this setting safer? How can we help to equip providers with what they need so that they do feel comfortable having important conversations? And then that, also, along the same time that I was looking at starting to get an interest in this area, dr Tiffany Taft and colleagues in Chicago had also started looking at rates of medical trauma in the IBD population as well, and finding that there was really high rates of post-traumatic stress for patients with Crohn's and ulcerative colitis. And so, long story short, she and I, along with Dr Allie Fuss, are now part of a research team that are all kind of looking at this together.
Speaker 2:Nice, I like that. First, I want to just highlight something that you said about the physicians that you talked to didn't feel equipped to support their patients through trauma, and it's not that they didn't want to. So everybody who's listening maybe there are 25 of you now who are listening just think about that when you're talking to your doctor, even 25 years in, I still have to. I would say not my current physician, but sometimes if I'm seeing with a PA or the NP or past doctors, I've had to kind of coach them through that a little bit, which it shouldn't be our job as a patient. But they only know what they know and they do. They become physicians because they want to help us. So thank you for highlighting that you did have those conversations and they did share that with you. That it's not for lack of wanting to support, but also they just didn't want to make it worse. Yeah, absolutely.
Speaker 2:In the research that you're doing. You said that like it's a high prevalence of trauma in IBD, but as it pertains to trauma-informed care, what are you finding? This is probably I don't know. I'm probably asking two completely different questions and trying to smash them together, but what are you finding, if you can share that? And then how do you see that? Informing clinical care.
Speaker 3:So it can probably come at this a couple of different ways. So so there really is not a lot of research in trauma-informed care practices in GI, so the majority of it was really looking at prevalence and also some general recommendations, but not a lot of research on what is actually being done. That is starting to change really over the past couple of years. We're starting to see some additional and there's some other actually GI psychologists that are also interested in this as well, so we are starting to see a few more studies come out since about 2023. One of the kind of first questions is looking specifically at screening practices. So do providers ask about history of trauma? If so, to whom do they ask? Are they asking everyone? Are they asking specific people? So this is part of my fellowship research that I did. So we did a survey it was just an internal survey of our physicians in the division and we asked about you know, how often do you screen patients with history of trauma? How often do you screen before colonoscopy? Who do you screen patients with history of trauma? How often do you screen before colonoscopy? Who do you screen? What are the factors that you consider before screening? Just to get a general sense of you know, if you do not, if you choose not to screen, what are the reasons for that, what are the barriers to doing so? And so what we found is that around 50% of providers said that they did screen consistently or, trying to remember the exact wording, it was kind of frequently, frequently screened for trauma, and I cannot remember the percentage that screened before colonoscopy, but it was somewhere around 50%. So 50% who do? 50% who do not? The providers this will not be a surprise probably to anyone, but the providers that were more likely to screen were female. So female providers do tend to feel a little bit more comfortable in that area that, or perhaps just have a higher kind of, maybe, awareness of the need to do so. We also in terms of who they were screening. This is also consistent with the other literature as well. So more likely to screen in females, more likely to screen for patients with particular diagnoses like IBS, and then there were certain factors like if the patient had a history of anxiety or if they observed particular behaviors, like if the patient appeared anxious and things like that, and so one of the things that I took away from that was one. So we, you know, think 50% is still more than what we thought. So you know that's promising that at least 50% of providers were considering screening, but also that there is a significant risk when we approach something like trauma screening with only certain kinds of people in mind. So when we come in with that bias of trauma is more likely to happen to females. Some types, some types of trauma are more likely or more common in females. That doesn't mean that the people of other genders are not experiencing those types of trauma.
Speaker 3:Or how someone presents, do they seem anxious One. I would not want someone to automatically assume or view someone through the assumption that this person has experienced trauma. I wouldn't want someone just to automatically make that assumption. There's plenty of other reasons that person might be feeling nervous in your clinic. But again, trauma is a possible explanation for why that person might feel anxious.
Speaker 3:But I think, even more importantly, you can be a stoic male that is seems like you know, seems very put together and doesn't really seem to emote any, isn't really emoting anything in particular, and have had a really difficult past or had a difficult medical trauma situation.
Speaker 3:And so how people present externally does not define what their history has been like. And so one of the movements now and I'm really pleased to see that other people are starting to talk about this as well is that we really want to move toward this idea of trauma informed care for all people, regardless of how they present and also regardless of whether or not they do have a prior trauma history. Because, regardless, if you're coming into this setting and we're going to be doing exams and you know, poking and prodding and doing various things that can be anxiety provoking if we can build a system that is supportive, you know, of both people with a history of trauma and also people at risk, we can really just provide better care. It really just comes down to trauma-informed care is better care for everyone. So that's kind of where I see this headed.
Speaker 2:I love that. I will have to say that I use dark humor in those kinds of situations and also I have to be really careful of when someone is trying to approach it from that perspective, me not getting jaded, like going like okay, here we go. You know, and actually doing this show has helped me to say like I say this on the show all the time I have to be better myself as a patient. To not be so jaded is the only word that comes to mind, because when someone is asking me questions, in a way I'm I feel like nobody on the show get mad at me. I feel like it's almost patronizing, and so I I have to like give myself a little pep talk in the process of answering their questions. Like they are trying to approach me in a way that is, you know, trauma informed, so that they are asking me these questions and and I just I answer the.
Speaker 2:I have to like just you know, trauma informed, so that they are asking me these questions and and I just I answer the. I have to like just, you know, check myself before I wreck myself so I can answer those questions honestly. And it's because of the show, because I'm like what would I tell somebody on the show how would I expect them to behave, how would I want them to behave, in order to get the best care possible? So I have to do that for myself too. That is tough. As a patient who has experienced trauma, it's really tough to not be like oh this joker, do you mind if I ask?
Speaker 3:you a question? No, go ahead, no, go ahead. Do you feel that way? More so, if the person seems uncomfortable with asking the question, does that impact or that's a good question.
Speaker 2:I'm being interviewed on my own show. Everyone that is a good question. So one particular situation comes to mind Everybody I promise I'm not going to turn this into a personal therapy session I had to go to the ER after a scope this was November of I guess it was 2023 now and they nicked a blood vessel in the scope. So afterwards I ended up bleeding a lot and I was home alone for a week it happened to be a holiday week and I had to literally give myself a pep talk to go into the emergency room because I was like, okay, okay, robin, this is a lot of blood now, like this is not just, you know, a little bit of blood, this is not just my J pouch blood. Amber Treska, who's been on the show, told me at one point that zero blood is the normal amount of blood and I said I don't agree blood. And I said I don't agree, but anyway. So I mean it was just a lot.
Speaker 2:I literally had to tell myself it's okay to go to the emergency room and like, if you don't go to the emergency room now, you might pass out in your house and then not nobody's here to help you get there. So I drive three hours to the emergency room where my doctor is, and in that situation, like, I stopped eating food. I really stopped drinking because I was like they're going to have to scope me again, so I'm just going to be prepared for that. And in the course of that I stopped bleeding. And so when I got to the emergency room, like when I first got there, I passed blood initially, but then, once I finally got back to a room and people were seeing me and talking to me, there was no evidence of me having so much blood.
Speaker 2:And so when I got to the point where the hospitalist, the emergency room doctor, came to ask me questions, the kinds of questions he was asking was like so you said there was blood, was it like a lot of blood or was it like a little bit of blood on the toilet paper? And so I was like, okay, my guy, I have had Crohn's disease for 25 years. I know the difference between a little bit of blood and a lot of blood. So I had to like, bring myself back and say he doesn't know that.
Speaker 2:And so the way that I responded to him, after I gave myself a little check, was like, you know, I thought it might be hemorrhoid blood at first too. But I can see how you would ask me if there's a little bit of blood on the toilet paper and that could be scary for a lot of people. But I have lived with IBD for 25 years and so there's a difference between a little bit of blood on the toilet paper and, you know, a lot of blood in the toilet, like passing only blood. And he's like, oh, yes, ok, yes, yes, yes. So I had to like take a step back and say he's not asking this to be condescending, like he's genuine, he doesn't know my history and so when you have experienced trauma, that part is hard like retelling your story over and, over and over again.
Speaker 2:And actually, in that emergency room visit that's the first time I had to go to the emergency room in a long time I had two panic attacks, sharing my story with two different doctors. And so the first doctor came down and I started sharing my story and then I started my chest is getting a little tight right now. My chest started getting tight, tears started, and I was like, okay, you're going to have to give me a second because I'm having a trauma response. And then, about an hour later, a hospitalist came in and so I had to go through the whole thing again and I thought, okay, I'm going to be fine, I'm going to be able to get through this one, because I just did it and I did the exact same thing. I was like, okay, you're going to have to give me a second because I'm having all right, okay, this is a little bit too much in a 24-hour period.
Speaker 2:So I really do have to think about being able to respond in a way that's not snarky, right? Because they're just doing their job, they're trying to find out what's going on, and they were being very thoughtful and considerate and asking those questions and I had to keep myself from getting defensive. It's hard, when you've experienced trauma to not go right there, and so I can completely see how physicians don't want to make that worse. We have to work hand in hand and I hate to say that it's the patient's responsibility because we didn't ask for this right. We've already been through so much, but it is a little bit, especially somebody who's been living with it for a long time and really understands that and has had to navigate it Like I feel like I would be doing patients coming after me a disservice if I didn't take the time to be thoughtful in my responses and potentially help them, help somebody through trauma.
Speaker 3:Thank you, I realize you didn't expect therapy today, but I appreciate your willingness to share that with me. I hear you in that you are trying to be mindful. You know in that position to realize wait a minute, like this person doesn't know me and is asking you know this is coming from a good place or is just trying to get to better understand my situation. I do think it is valuable for providers to keep in mind that this is not your first time answering that question, and especially in academic medical centers and teaching hospitals, where students come in and residents come in right, and a lot of times people want to take a history that we can really think we can be a little more thoughtful about who asks what questions, who communicates what to the rest of the team, so that we're not making people rehash really painful details again and again just because new person hasn't heard. That and I think that's part of trauma-informed care is really thinking about not just what questions to ask, but who asks this, when and how do we prevent? You know, in the midst of a colonoscopy, we don't need the check-in person asking about it, the tech, the nurse and the gastroenterologist all asking these questions we really need Don't forget the anesthesiologist.
Speaker 3:So, and this is where the research comes in, you know, I think when you started sharing your experience, one of the things I was thinking about is one of the research that my research team is about to start doing is really doing some qualitative interviews with patients, asking about their thoughts on various types of trauma, informed care strategies.
Speaker 3:Do they, you know, how do they feel about screening, if they feel that because there's been, there have been, there's been a couple of studies, in fact, I'm thinking of one that was from about 10 years ago, where they asked people who had experienced sexual abuse and were undergoing colonoscopy and there was a question about do you think your gastroenterologist should ask about history of sexual abuse? And again, about 50% said yes, they should, and about 50% said no. We don't have any information about why the people said no, and so that's part of what we're trying to gather through this research. Is you know, is that because you've been asked before and it didn't go well? Is it because the person didn't know how to respond to that? Is it because you don't understand why someone would even bring this up? You know?
Speaker 2:Yeah, exactly yes, I'm having a colonoscopy. How is that pertinent to this situation?
Speaker 3:Yeah, and also, I think, really valuable questions about who should be asking this. How do we both gather the information to help someone feel safe to, you know, if somebody comes in and knows, you know, the last time I had a procedure of some kind, you know, maybe the anesthesia, you know, wasn't adequate or something didn't go well, and so I am now coming into this procedure, already apprehensive, already thought about canceling, thought about canceling multiple times because I just maybe, I'd rather just not. You know, I'll just postpone that test till next year, right? So there's value in a provider understanding that patient's experience and knowing this is really hard for me. There have been some things in the past that have made it, you know, made this a very unsafe feeling place, or a place maybe where I didn't feel heard or understood, maybe a place where my symptoms were originally ascribed to stress, which I see a lot. I see a lot in my patients. So there's reasons, there's reasons why I've been rescheduling my appointment or there's reasons why I am, you know, clenching my fist waiting in the waiting room, because it creates an opportunity for a provider to say one thank you for sharing that and let's work together to figure out how we can help this experience be more comfortable, for you to feel safe.
Speaker 3:Maybe you have ideas. Maybe you have ideas about what would help you. Can we collaborate on this to help this? Maybe it won't be, depending on what we're doing. Maybe it won't be like a super pleasant experience in terms of physical comfort, but can we help to at least create a space where you know that the people who are here are really motivated to take the very best care of you and that we're going to be looking out for anything that you know we're going to be keeping an eye out for. You know, if you seem to be feeling distressed or if we're seeing signs of pain, we're going to respond to that. We're not going to let you just keep going through this procedure and ignore those signs and symptoms, so that type of thing. I think this is where trauma-informed care and GI could head. But I fully acknowledge there's a lot to learn and your conversation about having to repeat your story so many times is a perfect example of that.
Speaker 2:Telling your story multiple times in a short amount of time. That's not ideal, that's not ideal. I'm going to switch gears a little bit, because we got deep there. What are you most excited about looking into now? Because you did say that you're going to start researching something. So what are you most excited about that and where it can take us?
Speaker 3:There's a couple of things. So I'm really excited about this upcoming project where, you know, getting ready to start recruiting, and I'm just really excited to really talk to people and really hear what people really think, because I think for the longest time we just haven't been able to answer the question what do patients want? We've had a few kind of survey-based questions where we've been able to get that. So I'm really excited to really find out what do patients want, what ideas do they have? You know, that's why we part of why we want to do a qualitative approach here is to just kind of come in and just leave that as open as possible so we can see what happens. And then I also think there are opportunities in the future to help a training providers like I'm really interested in potentially the developing a training program for people who are really interested in getting better at this, at practicing. I'm really hoping that this can lead to not just information that people can read about, but actually doing some work where they can get a chance to work up their nerves, because I think it's so important.
Speaker 3:You know, we as patients come in with our own anxieties. I don't have GI specific, you know, medical trauma, but I have had some really bad medical experiences in the medical setting. I'm very aware of how that can go. But our providers are coming in with a lot of nerves and insecurity and doubts themselves, and so one of my hopes is that we can help them to get a chance to work out those nerves, ask their questions and practice so that when they are going in to talk with patients that they've had a chance to kind of really strengthen those skills a bit as well. I think first we want to know what the patients really want and that we can help the providers learn how to do that.
Speaker 2:And then you're going to get every single person is going to give you a different answer about what they want.
Speaker 3:Very true, it is very true.
Speaker 2:Right, we have to find those common themes, right? I am curious about like I did therapy because of medical trauma, like I never thought that I was somebody that was going to have to have therapy. I am a very self-aware person and I, if I thought that something was wrong with me, I would read a book about it and then, you know, do those things that were in the book and like very much when it came to that kind of stuff not self diagnosing, but, okay, recognize a problem, get the information, make changes based on that and move on with my happy little life. But after my J pouch surgery in December of 2020, I really experienced a lot of trauma from a specific provider and I ended up changing providers mid J pouch surgery and I ended up like going back to the original provider's office and sharing with them why I was changing providers. It did everyone did zero good, but I went into intense therapy. I even did EMDR because, like, this is a reoccurring thing, right? You can't just go to therapy and you're cured of that thing and then you never have to do it again.
Speaker 2:When we have a chronic illness, when we have IBD, it's constant. There's the potential for re-traumatization, right? Just, over and, over and over again, and so very recently I had a conversation with not my specific doctor but another provider, and after that conversation he texted Alicia and I was like I think I'm going to have to start therapy again. Like I'm not feeling very good, like I think that I'm going to need a referral to another practice because not my doctor, but somebody in their office and I know that my doctor sometimes listens to this. So please forgive me, I'm still with you. Thank you for the way that you handled it, you know.
Speaker 2:So it was like just one little thing that happened in a virtual visit and I was like I, I'm not going through this again. Like I'm, I'm not going through it again. So, and maybe you don't have an answer to this but what is the thing that we can do as patients if we're not in therapy? To kind of and I hate this word because it puts the onus on us, it's like something's wrong with us but to build resiliency, so like, help us to be able to say like, okay, I'm in a situation that is probably not good for what I'm experiencing. How can I respond to the doctor? How can I fortify myself so that I'm not having this like traumatic reliving of it. How do we build up that resiliency, I guess, is the basic, what it comes down to.
Speaker 3:How do we build that up so that you can continue to get the medical care that you need and not, you know, have to avoid that? Am I hearing that?
Speaker 2:Yes.
Speaker 3:Thinking about this in a couple of ways. So I might answer this in a couple of different ways. So one if you are experiencing post-traumatic stress whether it's full-blown criteria to meet, you know a diagnosis of PTSD or just you know ongoing post-traumatic symptoms, flashbacks. You know increased arousal in certain environments, desire to kind of avoid medical settings or those triggering environments or anything that just reminds you of someone or something or someplace In those environments. You know if we're not already working with a trauma-focused specialist, I'll say not just in therapy, but working with somebody who specifically focuses on trauma. This is your invitation that it can really help. It can really help.
Speaker 3:I'm not saying that everybody who has experienced something that they consider to be traumatic necessarily needs to do EMDR or to do, you know, a full course of trauma-focused treatment. But if you are finding that you are dealing with those symptoms on a pretty regular basis, please do consider it. I absolutely understand why people avoid it, because it means approaching the thing that we've been wanting to avoid, and so really the hardest part of it often is showing up and following through with that. But it really can help and you don't have to live with the symptoms of PTSD for the rest of your life. It really is treatable. I really appreciate that you brought up the fact that one of the things that makes medical trauma in particular so challenging is that it's really hard to not put yourself in a position that's similar to the one that caused the traumatic experience in the first time.
Speaker 3:If you want to get medical care, there are times where you are having to put yourself back in that situation and that is, for lack of better term, you know, just unfair. It's unfair and also I want, I want everybody to be able to get the care they need as well. I think a couple things can help, just from, like, a non-post-traumatic stress perspective. So if you know that there are certain aspects of the medical environment, know that there are certain aspects of the medical environment, certain aspects of exams or conversations or waiting rooms, or if you know what it is that for you seems to get you every time, or almost every time, a conversation with your provider or somebody in the team it doesn't have to necessarily be the gastroenterologist, maybe it's your favorite nurse, maybe it's somebody else there that you really trust Having a conversation to say I just, you know, I wanted to let you know this. Something about this makes me really nervous every time.
Speaker 3:And I'm wondering if there's anything you could be done to help address that. You know, just pointing it out to somebody. I know that's hard, I know that's really hard to bring that up, but rather than trying to just cope with it every time, if we can address it, maybe we can help you have a different experience. I think that's my goal is to, because if people can have a different experience in the medical setting, one of the things that can do from a trauma perspective is it lets the brain know that, while, yes, that bad experience or that multiple bad experiences because we know a lot of times trauma happens more than once yes, that happened, that is real, that was a part of our history. It is a part of our history.
Speaker 3:But I have had other situations that went better. I have had providers that listened, who believed me, who didn't question me on that, who advocated for me, and that can help the brain understand that there is more to this world than that experience that I had, or multiple experience, and that can be really helpful in finding that place of safety. Does that make sense?
Speaker 2:No, it makes perfect sense and I love the way that you put it, because how is our provider to know that we are experiencing that if we are unable to share it? It's just like sharing your symptoms. It's just like answering questions Honestly when you go in the office. It's why we say you know, bring somebody with you If you think you're not going to remember everything. Bring a notebook, write down questions in advance so you don't forget, because we are all human. A notebook, write down questions in advance so you don't forget, because we are all human, they are human and I spoil your alert for everybody. They can't read your mind. So the physicians, our GI, psychologists no one can read your mind. So the onus is on us to actually share that. We are feeling uncomfortable, or we are starting to have that anxiety, or for me, everything's in my body. My chest is getting tight, tears are rolling down my face, like it. It is my responsibility to share that, otherwise they have no idea what I'm experiencing if I'm not vocalizing it.
Speaker 3:And you, and sharing that you are uncomfortable doesn't mean you have to retell your trauma story, right? You? You can just express hey, I just wanted to let you know I feel really nervous whenever I come in here. There's lots of ways we can say that right, if you're worried about offending your doctor, you can say it's not you, it's based on previous experiences I've had, and they can actually take the lead then and say, oh, like, let's talk about that, right, this actually gives the provider an opportunity to really connect with you and be there with you.
Speaker 3:I also really realized that in any situation that makes us feel really anxious, it is really hard to speak up right. A lot of times what we do when we're very anxious is we shut down. And so I just want to acknowledge to anyone listening that I know we're saying you know, providers can't read your mind and it can be really helpful to share. And I also just want to acknowledge I totally get it if you want to do that. But in the moment you shut down, maybe after having that realization, we might go home and talk to a loved one and say, hey, next time will you come with me? Can you help address, like, what's happening in the room, like there are some ways that we can, we can work with that, to help with that. But yeah, I think if you are finding that you know, a lot of times providers send information results through the portal and I have experienced numerous people who have said I'm terrified, terrified to read that and so I just avoid it, and so sometimes people don't get information.
Speaker 3:A lot of times that information says everything's fine.
Speaker 3:But if you know that that is a trigger for you, if you know that that just causes so much anxiety that it's essentially not an effective form of communication for you, then maybe have a conversation with your team and say could somebody call me or is there?
Speaker 3:You know, come up with a plan so that you can get the information that you need right. So sometimes, just bringing this up, we can come up with constructive solutions to either revise how we do things or come up with a coping plan, a trauma-informed plan. So we're aware that, hey, maybe I know that I tend to dissociate when there's pain or if there's touch or if there's a smell or there's some, whatever the trick, it could be numerous things. If I know that that's what I tend to do and a lot of times people do know that sometimes people aren't aware of what dissociation is. But if they know that, that's what I tend to do, and a lot of times people do know that Sometimes people aren't aware of what dissociation is. But, you know, if they know that there's something they tend to do in certain moments and I'm going to put the onus back on the doctor and just admit it.
Speaker 2:but while we're talking about this from a patient perspective, then we can talk about that.
Speaker 3:We can talk about that and you know, I will do this with my patients when they acknowledge there's certain things that happen, because we can come up with a plan together for what they can do, and then, with that person's permission, I can reach out to the doctor and communicate that and say, hey, we came up with this idea for this next procedure. You know, would you be open to this? And we can actually work together to come up with a system to say, hey, I tend to say yes, or say I'm okay, or say I'm fine when I'm not fine, and so that's because I'm just trying to kind of check out and I just want to get through this and pretend like it's not happening. But that also means I'm not speaking up if I need to stop or if I'm in pain, and so that's probably not the most effective or helpful thing for me, but it's what I do, it's what I know, and so we can work together to come up with strategies, maybe a nonverbal, maybe a hey, I'm going to raise my finger if I'm feeling in pain, or something like that.
Speaker 3:So there's lots of different ways that we can work together as a team. So again, if a person feels comfortable bringing that up to the doctor, that can be hugely helpful. I'm also going to say from a provider perspective, this is where developing your own communication approach long before we get into actually doing sensitive procedures or any of those things that can be triggering, having a communication approach to just address, you know, is there anything about prior experiences with IBD that has caused a lot of anxiety, or is there anything that you really struggle with as part of this? Is there anything I should know about that? I really encourage providers to be proactive in opening up that door because I think that makes it a lot easier from the patient perspective to then answer that question if they know the provider wants to know.
Speaker 2:Yes, and I would say that I know I'm only one person, but we've talked to a lot of patients, and I've talked to a lot of patients over the years. Just knowing that they're willing to listen to something like that, even if they don't know what to do we don't expect them to know what to do in every situation so just knowing that they're open to that, having that conversation, makes you feel more comfortable and safe, which is really what it's about, right? You're feeling unsafe, feeling more comfortable and safe in their care. One thing that I've said on the show more than one time is that and you've said it multiple times with it's a medical team.
Speaker 2:When you have IBD, it is a team. There is a team approach. You have so many different types of providers and you are the captain of that team as the patient, and so if you don't direct your team, I don't want to put the I hate putting the onus on us back on patients, but we do have to captain that team if we're going to get the best care that we possibly can. And I also want to recognize that not everybody has access to these institutions that do research and the IBD centers of excellence, and not everyone has access to therapy or like if they're employed, they're provided as an employee insurance for that. So I do recognize that not everybody has access to that team approach. But if you can get it, take advantage of it and if your employer has an, is it AEP, eap.
Speaker 3:EAP. Thank you, An.
Speaker 2:EAP plan. A lot of times that will have like five or six free visits with a therapist. So if your insurance doesn't cover therapy but your employer does have an EAP plan, you should look into that and see if they do provide free visits, because that is such a wonderful way to get started, or at least to give you the tools and tricks that you need initially to be able to build your resiliency and feel safer in someone else's care.
Speaker 3:Absolutely.
Speaker 2:Unfortunately, it's time for me to ask you the last question, and I have loved this conversation so so much, even though my chest is good tight and I'm like I cried at one point. Thank you so much for coming on the show. But to wrap things up, what is the one thing that you want the IBD community to know?
Speaker 3:First I want to say I want to say thank you to you for being so open, and I think that that will be really helpful to so many people and also it's been really informative for me. You've really got me thinking about some things that were not right at the top there, and so I really appreciate it some things that were not right at the top there, and so I really appreciate it. I really do so in terms of what I think providers really need to know. I'm just going to reiterate what I said earlier. You know, I realized that when you know someone comes in for a new patient appointment, there's so much to learn, there's so much to know about this person and you know. A huge part of that is you know, looking through records and getting a sense of you know. A huge part of that is you know, looking through records and getting a sense of you know all the things on paper that we can, labs and all of this.
Speaker 3:My biggest recommendation for providers that are working with patients with IBD whether you're an IBD specialist or whether you're a primary care doctor or whether you're a general GI is to keep in mind that people living with IBD are so much more than their labs, their test results, how those biomarkers are looking, that everybody's really coming in with prior experiences that really shape their interaction with you and the medical system.
Speaker 3:Not everybody has necessarily had adverse events that are coming in, but you know, especially if you're not the first provider they've seen, they probably have some things to share with you.
Speaker 3:And so I really encourage being proactive in getting to know the patient's experience and not just the dates, dates of when they were diagnosed, what the symptoms were, but really approach them to get to know them as a person and understand the experiences they are bringing in with them.
Speaker 3:We don't have to directly ask necessarily, especially in that first appointment do you have a history of trauma? I think, especially when you're getting to know someone that can be kind of a tough conversation to lead with, to know someone that can be kind of a tough conversation to lead with, but we could open up the dialogue to say is there anything about your prior experience to getting to here that I should know, any kind of difficult experiences or anything that have made this journey harder for you? Because I'd really like to understand that and maybe we can figure out how to make this a better experience going forward. Maybe you know that person will say, no, everything's been really smooth and easy. But just like you were saying earlier, I think just the willingness to listen, just the fact that you're conveying, I care and I really want to understand what you're bringing in, what your experiences have been, can really help that relationship start off on the right foot and really help you kind of identify some ways to help create safety from the get-go.
Speaker 2:Amen to that and, on that note, thank you everybody for listening. Thank you again so much, christina, for joining us and cheers everybody. Thank you.
Speaker 1:If you liked this episode, please rate, review, subscribe and, even better, share it with your friends. Cheers.
