Understanding the Patient Experience in Short Bowel Syndrome

That iron would work committed to advancing research for people living with gastrointestinal and rare diseases, including short bowel syndrome, SPS. We believe progress starts by listening, working alongside patients and clinicians to design meaningful research and much needed education. You can discover more about our latest research at ironwoodfarmad.com. And to support conversations about SPS, check out Let'sTalkSPS.com. It includes resources, tips, and frequently asked questions from lived experience and nutrition experts. Hey everyone. Welcome to the Diatitions and Nutrition Support Podcast. This episode is sponsored by Ironwood Pharmaceuticals. Today's discussion focuses on a truly critical element in clinical practice, the patient experience. As dieticians and healthcare professionals, we spend a great deal of time managing labs, optimizing nutrition support, and adjusting regimens. But behind every nutrition care plan is a person, navigating daily challenges, uncertainty, and adaptation. That's especially true for individuals living with short bowel syndrome or SPS. SPS is a complex, malabsorptive condition that occurs when a significant portion of the small intestine is missing or non-functional. This can result from surgical resection, congenital conditions, or disease-related damage. Patients often face lifelong challenges related to nutrient absorption, hydration, and dependence on either parental or interim nutrition. Today we're bringing together both clinical and lived experiences. We're joined by registered dietician Dr. Marion Weepler, an expert in nutrition support, and Michael McCormack, who shares his personal experience living with SPS. She has a professor of surgery at Brown University, Albert School of Medicine and Providence, Rhode Island, and a surgical nutrition specialist in the Department of Surgery at Rhode Island Hospital. Dr. Weepler has expertise in managing, enteral, and parental nutrition, and acute care, critical care, and home care, and has the expertise and nutrition management of small bowel syndrome. She received her Bachelor of Science degree in Nutrition from Case Western Reserve University in Cleveland, a Master of Science degree in Allied Health and Clinical Dietic Research from the University of Connecticut, and her PhD in Health Sciences for Marker's University. She's the past president and award-winning dietician with the American Society for Parental and Internal Nutrition, and the Aspen Roads Research Foundation. Dr. Weepler serves as Deputy Editor for the Journal of Parental and Internal Nutrition, also known as J.Pen, and Research Editor for the Journal of the Academy of Nutrition Dietetics. She is on the Medical Advisory Board for the Lipt Echo, which stands for Learn and Testinal Failure Therapy. She speaks nationally and internationally on topics, including malnutrition, short-belts to room, and internal and parental nutrition. Her current research focuses on quality of life and patient-reported outcomes and home parental nutrition. This conversation is designed to deepen our understanding, strengthen empathy, and ultimately improve the care we provide. Thanks so much for joining. Coming to you from the Dieticians and Nutrition Support Dietic Practice Group, this is the DNS member podcast where we explore topics relevant to our field. From support-line content to nutrition celebrity interviews and everything in-between, this podcast is where DNS members can go behind the scenes and explore the driving forces behind cutting-edge nutrition support. I'm your host, Christina Rollins. Let's get started. Well, thank you both so much for joining us today on the DNS podcast. I'm so grateful for you to share your time and your story with us. No problem. Anytime. Anytime, anything to help? So, Michael, can you start by sharing a little bit about your journey from diagnosis to now living with Shore-Balcentrum? Well, it all started with me in 2017. Well, 2015, I should say, I fell to a roof in upstate New York doing construction and they noticed my small intestine and my large intestine with twisted together. So they went in there, they untwisted everything, everything healed up fine, and then a couple years later I was away again for work and I got septic. It was really sick, I was throwing up those almost like purplish, brownish color and then I had to come home and I came home and then ended up spending three months in ICU because of my, I was all full of everything just to, nothing was working. So my half my small intestine ended up dying. So that's how I have the Shore-Gut syndrome as of now. What's the Shore-Gut syndrome? Was it tied to the initial injury or was it you got injured and they just happened to find it during that admission? And then I'm not quite sure. I think I was having a problem before because I was having a tough time going to the bathroom and I never had a hard time going to the bathroom. So it could have been before but it could have been during that nobody knows because I was pretty healthy before the fall. Well, very and far listeners who are maybe not as familiar with SBS, can you provide a bit of a clinical overview of the condition and really what nutritional challenges individuals face when they're living with the disease? Sure. So Shore-Bell syndrome really refers to the condition from a massive surgical resection, often removal of half of the small intestine with or without some colon. And Shore-Bell syndrome is often related to either underlying inflammatory bowel disease that requires surgery, cancer, intestinal ischemia, mesenteric ischemia, abdominal trauma or injury to the intestine. Could occur from or after complications of bariatric surgery? Neonatal conditions such as Necrotizing Anarchalitis or gastroskeces or even some hereditary diseases. Now we typically refer to Shore-Bell syndrome in terms of length but there could be functional Shore-Bell syndrome as well which could occur in the presence of radiation therapy that somebody may have had in the past with damage to the intestinal mucosa and other mucosal disorders. And I would also throw in intestinal fist julas depending on how proximal they are and understanding the anatomy of the fist jula, these individuals may also be classified as Shore-Bell syndrome. So Michael, if I can share, has 110 to 120 centimeters of remaining small bowel. And I first met him after that three month hospitalization when they were getting ready to send him home on home parental nutrition. They referred him to us. We were in a sister hospital. So I've known him almost 10 years now. He initially had a jagenostomy that was then later reversed and so he does have the anatomy of colon and continuity and he'd be classified under group three which is colon and continuity which is the most favorable group to try to wean somebody off parental nutrition and achieve entral autonomy. But you asked about other symptoms. So symptoms generally are related to the malabsorption and this leads to malnutrition, dehydration, weight loss, electrolyte abnormalities, acid-based disturbances and some of the complaints or symptoms that people report are extreme fatigue, nausea, cramping, pain, diarrhea which often has no rhyme or reason and impaired quality of life. But the challenges I think are really in managing, tracking and measuring the diarrhea and lifestyle adjustments that's related to the parental nutrition, having a central line, keeping it in infection free and all of the self-care that patients and their families have to endure to do this therapy safely. So I think that's, there are many others but that kind of summarizes them. Michael, what does a typical day look like for you balancing all of these nutritional and medical issues? Normal day, it consists of, I've got a pretty normal life, it's not, I don't know, it's pretty basic, I try to be myself busy, but I get a lot of bathroom breaks which kind of stink but yeah, everything, my day is pretty, I don't know, cut and dry. Like every day, I get to wake up, I go to watch what I eat sometimes because the more times whatever I eat, I go to the bathroom a lot too. So I got to just do that and I try to keep busy, most of the time and try to just stay hydrated too. That's one number one for having the sugar, stay in hydrated because you don't stay hydrated and end up in the hospital and stuff like that. I'm pretty used to it now. I've been doing it for a long time. So It's manageable. You know what I mean? It's not the end of the world, not the end of the world. So just taking care of myself and just trying to get better and better every day. Sure. So are you currently on any nutrition support? Yeah. Like getting to IVs. So what can you tell us a little bit about your own? I'm on TPN, which is, it's like supplements for like vitamins and stuff like eating also. Yeah, I'm on it 12 hours a day for five days a week. So that's pretty much, you know, yeah, I'm on a thing right now. I'm sorry. I can't get a little nervous. I can fill in a little bit. So, you know, with Michael's favorable anatomy, we've tried many, many times to weenem off. And that sometimes works. A lot of times he needs intermittent hydration and he always needs IV magnesium. And you know, sometimes he remains off for quite some time and then some unrelated intercurrent event happens. And I would call it, I don't know if you would, Michael, you kind of crash. You lose a lot of weight. Yeah, lose weight. Even become malnourished at times being off and then we start back up again. So, we try to balance, you know, the least amount of TPN or IV fluid he needs with what he's able to eat and absorb. So, Mary, what are your nutrition goals for him? Like it is getting off TPN on the table or what are you managing that? Yeah. Well, I think for, you know, for anyone and including Michael at times, it's to correct malnutrition if that actually exists or to maintain nutritional status if somebody is of good body composition and performance status and function. Yes, I think we're always trying to ween or reduce or find the least number of nights that he has to do TPN. That's for him sometimes resulted in having to go to an infusion suite for hydration or magnesium replacement. And it's our goal to do that because he's has had many infections even though he's very good at all the techniques. So, you know, we would really like to get that central line out and have him be able to maintain himself with the least amount of IV fluids as possible. Sure. Yeah. So, you guys have been working together for 10 years. That's a long time. So, Michael from your seat, what has been kind of the most helpful things you've gotten from, not just Mary, but your whole health care team. Like, how have these folks helped you along the way? They just, they take good care of you and they just make sure you're well-cretioned and then you live in your everyday life. You know, a lot of people get upset, depressed and, you know, just trying to get maintain their way and foods they eat in the bathroom. And it's just they help out tremendously. You know, I can't say enough about the team that I have and I love them all and they take good care of me. And Mary, from your perspective, how do you keep it fresh? How do you keep it from getting in that same old regimen and possibly missing things? You know, because you have been working together for so long. Well, you know, we've stayed in touch in the periods of time when he's been on and off a GPN actually, working together with diet and oral rehydration, which is hard to do. You can talk a little bit about what you learned with that. I think that it stays fresh because there's always new things happening in the field. There are new medications, new advancement, some clinical trials, just new information. And we share that with our patients. And Michael has taken advantage and participated in some of those studies or I think benefited from having that, you know, awareness of new knowledge and things to do. Well, I'm glad you brought up the oral rehydration because I know in the past I've given these recipes to patients and they're just really weird looking recipes, right? It's not something you're used to doing at home. So tell us about that experience and what did you learn from it? You got to stay hydrated because it's the whole name of the game. The bathrooms, not you were a nightmare or you were a Santa me, but it just dehydrates you very quickly and being on the heat and the certain foods you eat, you know, you just got to stay hydrated and sometimes it's hard, you know, like sometimes it's really hard and you're doing things or trying to be normal and it just, you just go to the bathroom a lot more often than most people and it's just trying to stay hydrated, trying to, you know, on a daily basis. So that's why the TPN comes in and helps you out about that too. So. Do you hear my voice in your head all the time? No. You don't. I thought you would say yes. I did it. Sip, sip, sip, sip, sip. I may see an email coming around. I'm like, oh, yep. There they are. Yeah. Or a phone call usually, you know. So no, but I appreciate everything that they do for me and they do a good job at it too. So well, Marion, I know from your work and your research that you have a strong focus on the patient experience and patient work for the reported health outcomes. So what can we as dietitians do to really keep that at the forefront of our clinical decision making and our care planning? So I learned through research and through my interactions with patients that there is a desire for more than nutritional assessment and a physical exam. In fact, many people say that their encounters with clinicians are like TPN tune ups where they're focused on what's in the bag and the labs and the weight and what the desire is for more talk about, you know, adjusting to life, being able to travel, things that are important and more psychosocial conversation. So my advice is to engage in dialogue and discussion. Ask the patient you're working with. What are their goals? Are they having their personal goals for themselves, living with your bowel syndrome, for their experience on IV nutrition or hydration? What are their personal goals and then work together to try to establish plans so they can achieve that? I also think it's important to ask what is your quality of life? How is your quality life? How do you define it? What factors influence it positively or negatively? I find often that my patients will say, "I have good quality of life," where you might imagine as the clinician that it's not, that it's fair or poor. So you know, people understand how to adjust. They know what the alternative might be and you know, they try to normalize their situation and move forward. You're hearing that and everything Michael is saying. And I think that conversation is key and that it really is not all about just the diet and what's in the bag and the labs and things. And then I would also say that have an open mind because you know, what we're really good at is dietitians is teaching about the diet and the restrictions or the oral rehydration and you know, what we know is best practice, but it doesn't always work for everyone. Many times it does nothing to improve the diarrhea or the GI symptoms or whatever. And then you kind of have to shift your focus and talk about, you know, what can you do to eat for comfort and pleasure and quality of life? So I think having that open mind being flexible in your approach and really establishing a report and dialogue and conversation with the patient and the family if they wish really is the most rewarding part of this. Michael, when you think about your own journey with this illness, have there been any points where you thought, gosh, I wish I had more support, more resources or you found something surprising that you weren't quite sure how to manage. No, not really because I got a good team and they've been taking great care of me for 10 years now and you know, it's just, it's just, when you, when you first get diagnosed with this, it's just trying to figure out like you're eating habits and like what makes you go the best? more what doesn't you know you get a it's just a little lifestyle just I don't know I just try to make the most out of it and be upbeat as I can help anybody out I can and I speak into people now or people listening you know ask some questions because it is hard at first it's tough to get used to that lifestyle always being in the bathroom and your family functions and you gotta go why does he keep going the bathroom you just you get it just kind of take it a day at a time one step at a time Marian like what are some misconceptions that you've encountered or things that you wish clinicians would do a better job at just kind of generally speaking with SDS I think it's important that even if you don't have a lot of experience or expertise because it is a rare disorder and you may not encounter unless you're working in intestinal rehabilitation program or you know like what we do is we do home TPN so the vast majority of patients actually have it so you begin to develop an expertise but most patients are managed by people who may encounter one or two or three patients in the course of their year or their career and I would say never feel like you're isolated or alone and I mean that both for the clinician and also the patient I think that there's plenty of resources there's a lot of networking among clinicians and colleagues whether you network with GI specialists and dietitians who have GI expertise or those who work in intestinal rehab and short bowel specific short bowel expertise I think also there are opportunities to participate in active programs like the learning intestinal failure therapy echo program where you can basically have you know multi-disciplinary interaction and and expertise to provide guidance and best practices and assist in the management and care so I think one of the really important things is to never feel like you know I'm not really sure what I'm doing there's a lot of assistance out there same for patients you know I think the biggest thing I hear or I observe is you know I'm the only person experiencing this and I think that we as dietitians need to be very familiar with resources and connect our patients with Mania the online social media, Facebook or other opportunities they can meet people just like them or experiencing similar things or for example the only organization there are many opportunities to connect patients and I think that is a very valuable thing and then lastly I think that it's our duty to really teach and educate the patient about what is short bowel syndrome what is their anatomy is it's almost empowering them with information the more they understand the condition and how we manage and treat it I believe the more successful they are in making some of the very very hard changes they need to make in order to not just survive but thrive really thrive. And Michael as you hear all of that great information and advice is there anything that comes to mind that you think clinicians should know when working with patients with SPS or things you'd like us to do differently? No I wouldn't say no not do anything differently you know they've been doing a good job and they know what they're doing and I've been they've been great with me and I'm sure they're great with the other patients it's just they do a great job they really do they get they get you up and going they keep you up beat they keep you on track and you just gotta go with the punches go with the flow. Well I think it's clear you guys have built a nominal relationship I think we should all strive sort of clinician patient engagement so this is awesome. That patient in doctor you know relationship I think that that's a lot too you know and we haven't people that care about you and you care about them and and it hasn't been smooth sailing no I'm not saying no so in and out of the hospital having infections and needing new lines and a lot of challenges you've overcome and you know yet you still travel and you still you know engage with the family and and you know do activities you want to do. It is normal as a life as you possibly can you know and and my being in the hospital for so many times you just gotta stay up beat like that's what I would just tell everybody you know stay up beat it's gonna be a journey you'll you'll get through you'll figure it out and you'll learn your body over again because you're gonna give you how your body works again but you know just let's stay up beat stay positive that's that's my go-to you know and tell everybody that I've been in the hospital a lot of people that are sick and just if you don't stay up beat you know I think I don't know just and just stay up beat that's that's my motto in the hospital so anything anything your view would like to share otherwise or marry in any other tricks or tips that you can share with us before we wrap up today's episode now I'm at a loss for words well you know I think that really the positivity that Michael exudes is really rewarding and certainly not everybody has that same approach so you know I think though that should be the goal is to find something that is really important to the patient and and you know work so hard together to try to achieve that and then celebrate that milestone because there are a lot of things to learn there's a lot of self-care and the better you become at that then the more mobile you can be or that you can travel more easily and you can you know adjust your lifestyle or as Michael said create a new normal and understanding that I think is really key yeah just understanding how the bumps in the road go and then you just you progress and you know you know how to deal with it and things get better and they keep they keep me well hydrated and well full of vitamins so it helps it really helps and it keeps you positive and makes you maintain a clear head we love him for so well thank you both so much for sharing your stories I think this is just another great example of how nutrition plays such a vital role in the patient experience you've given us a lot of great things to think about as we move ahead so thank you both for sharing your stories with us. Thank you so much for joining us for today's episode of the DNS podcast if you enjoyed this discussion please take a moment to like and follow us on Spotify Apple Podcast or wherever you access your favorite content we also invite you to visit our website at eatrightpro.org to access a variety of nutrition support related resources many of which are at no cost to our members until next time I'm Christina Rollins thanks for listening