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
Re-Meet Robin & Alicia- What's New and What's Next for BMs!
This week we reflect on the journey since launching Bowel Moments in August 2021, sharing our personal updates and the lessons we've learned along the way. We reminisce about the podcast's beginnings as a concept born out of a love of podcasts and how it evolved into a heartfelt platform for the IBD community, featuring memorable interactions with guests. We open up about our own journeys, revealing more than just the polished elevator pitches we've rehearsed over the years.
As we look to the future, we discuss plans for expanding our reach, engaging diverse voices around the world, and demystifying healthcare navigation by involving nurses, physician assistants, and insurance insiders. Highlighting our dream interviews, we express our desire to feature influencers like Sunny Anderson, Mike McCready, Kim Holderness and Rachel Elizabeth Slocum, hoping they can bring fresh perspectives and humor to our discussions.
We want to keep growing our incredible community of listeners who are passionate about understanding and supporting the IBD journey. So, hit subscribe, share with those who might need a dose of inspiration or laughter, and let us know what you think by leaving a review. Your support means the world to us, and we're excited to continue sharing these meaningful conversations with you. Thank you for being part of our journey, and here's to a future of engaging stories and shared discoveries!
Links:
- Our episode with Dr. David Rubin
- Our episode with Stacey C- The Deuce
- Our episode with Dr. Ashish Patel
- Our episode with Dr. Anish Patel
- Our Research Roundup Episode with both Drs. Patel
- Our episode with Dr. David Schwartzberg
- Our episode with Stacey Collins- One of our guest hosts!
- Our episode with Hannah Cramer- One of our guest hosts!
- Our episode with Derek Dodson- One of our guest hosts!
- Our episode with Lauren Erbach Barnfield- One of our guest hosts!
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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, you'll catch up and reminisce with me and Robin. We decided to start out the year by catching up with each other. We wanted to let any of our new listeners know about why we started the podcast and a little bit about ourselves, as well as talk about what we really hope for in the future of our podcast and what we're planning for 2025. For those of you who know us, I think you'll learn something new, and for those who are new to the show, I hope you'll enjoy learning a little bit more about us. Cheers.
Speaker 2:Hi everybody, Welcome to Vowel Moments. This is Robin.
Speaker 1:Hey guys, this is Alicia, and we are so glad that you're here with us today and always, but especially glad today because we are recording a special episode. Robin very astutely pointed out that the last time we sort of did an episode just about us was in August of 2021, when we started this show, and a lot has changed for Robin in particular, frankly and so we thought it was probably time for us to catch up and let you guys know about the changes in our life and also just all of our ideas and visions for the future of Bowel Moments. So, robin, yes.
Speaker 1:Hello everyone. What are you drinking, Alicia? Oh, thank you. I am. You know what? It's January, so I am trying to A. As I've stated on this podcast multiple, multiple times, I'm trying to drink more water. So my New Year's resolution perpetual is to drink more water. So here's my water bottle and I have had one of them already, so I'm feeling very accomplished. Also, just because I have multiple people I know doing dry January, I'm doing a slightly modified version of that. I'm allowing myself a glass of wine here or there, but today I am drinking poppy, which is probiotic soda. Not sure I buy into the probiotic nature of it, but who knows, if I'm going to drink soda, I might as well drink something that's good for me. So this is the orange soda. What?
Speaker 2:about you, robin. I also have water, but I think I always have at least one kind of water, but there is sometimes three kinds of water. This is true. There is a winter storm. There is a winter storm happening this week, and I live in Florida and I don't get to take advantage of cold weather very often, so I'm having hot chocolate. Oh nice.
Speaker 1:I think it's hilarious because I again folks, I live in Minnesota and so it is currently like 10 degrees outside, and so I think it's really cute that all these Southerners that I'm talking to lately are like it's cold, because I'm like it's 45 degrees in Florida.
Speaker 2:45 degrees in Florida.
Speaker 1:That's cold for us. You guys don't have the infrastructure for that, so I'll stop.
Speaker 2:Or coats or winter coats, quite frankly. So cheers to the first show of 2025.
Speaker 1:Cheers to the first show of 2025.
Speaker 2:Yay, so we're going to do things a little bit different, and I am going to start with Alicia. We're going to start with you, okay. So for those of you who might be new to the show, alicia, tell us a little bit about yourself and how you got involved with the IBD community.
Speaker 1:Okay, you know Robin Brow beat me into this because I don't love talking about myself. I did. I'm shameless, no, no, it's just that. Well, if people don't know on the show, I am not the person living with inflammatory bowel disease. So I feel like a little bit of just like a hanger on poser in this group. But you guys are so much fun that I just really wanted to join.
Speaker 1:But how did I get involved kind of with the IBD community? So I am a social worker. I've been a social worker for well. I got my master's degree back in 2007. I did psychology before that and so worked social work type roles and have always worked in chronic illness, chronic diseases. So I was fortunate enough to professionally get involved with the community Think of back in 2015, professionally got involved with the Crohn's and colitis community. So that really is where I started to get to know these diseases and started to get to know the doctors that serve the patients and all of the healthcare professionals that are part of this community and, of course, all of the amazing patients that I met. And so that's really where I started and kind of learned to love this community and found that it's just. It feels like everybody in this community just really has a great sense of humor and is just super welcoming and it's such a big, warm community, and so I just really kind of fell in love with it, and so that's kind of how I got started and we just kept you around. Well, I think I forced myself onto you guys. But thank you for allowing me to stay.
Speaker 1:Now I actually don't work professionally with the IBD community any longer directly, but now I run a nonprofit organization and so I've moved from a disease specific organization to another nonprofit organization that works with people living with chronic illnesses, and so I'm still attached to the community, still working within the community, but just not in a IBD specific role. So still still involved though. So that's good, and of course I still do this show with you. Yes, robin, now onto you. Next question, and in our first show I basically kind of interviewed you, similar to the way we interview our guests, although much rougher. We've gotten a lot better, I think, as we've gone. So I think people probably have listened to that show. But tell us a little bit about, kind of, how did you get involved with the IBD community. Just kind of give us a revisit. And then also, why did you decide to? How did you decide to get involved in this show?
Speaker 2:I'll try to do a quick and dirty recap.
Speaker 1:Sorry.
Speaker 2:I know because it's been so many years half my life, actually. I was diagnosed in 2000. And, like most of our guests, you know, had a dramatic and traumatic entrance into the IBD community and had surgery pretty quickly, like you know. Life and death, all this stuff. But then I had two very small children. I had a two-year-old and my baby turned one while I was in the hospital, you know, having surgery and everything.
Speaker 2:So once I had the surgery to have my colon removed, lived with an ostomy for a year and then had my takedown, I was focused on taking care of my kids living life. I didn't really engage in the community on taking care of my kids living life. I didn't really engage in the community. At that time, 25 years ago, if you had ulcerative colitis and you had your colon removed I hate to even say this, but the thought was and I'm using air quotes here that you were cured right. Fun fact, though, when I had my pathology reports done when they removed my colon, they did not give me a J pouch at that time, which they were doing, but very infrequently my pathology reports came back inconclusive. My ulcerative colitis was so bad they couldn't tell if it was ulcerative colitis or Crohn's, and so they loosely changed my diagnosis to indeterminate and didn't give me a J pouch. So I lived with what's called an IRA ileorectal anastomosis, which when we talked to Amber she was like I was only one of two people that she'd ever met with that and I've only met one other person that has had that too. So I lived like that for 18 years, 17 years, 18 years. And it wasn't until I started doing 5Ks and my best friend at the time said you should do a half marathon with the Crowns and Colitis Foundation, with Team Challenge, because she knew someone. It was a random thing, like I moved from Louisiana to Texas, met this person at work, we started doing 5Ks together and she happened to know somebody one of her best friends from high school. His wife had Crohn's and they did Team Challenge and so she sent me the link. She reached out to him, they sent me the link.
Speaker 2:I did a half marathon with Team Challenge in Hawaii in 2011, I think 2011. And that was it. That was it. That was like 10 years after my diagnosis. It was the first time I'd ever been around a community of people that knew what I was going through, that I didn't have to explain anything to. Before I knew what Camp Oasis was, I called it summer camp for adults.
Speaker 2:Like I had found my people, I came home from that race and immediately signed up for the next race, which was in Las Vegas. And I did that one. And then I did Hawaii again and I did Vegas again and I did Nashville, virginia wine country. Like I was fundraising and running these races. And then they actually did start a take steps walk in my community for the first time, which was wild to me because I lived out in the middle of nowhere, west Texas. So I got involved with helping with the walk. But I also, on the download, was looking for a job. You know I wanted to make have a bigger impact on the community.
Speaker 2:So team challenge was my introduction to being involved with the community and as a part of my fundraising I started writing an article for the local newspaper to like, follow my fundraising and share my journey. And so many people responded and sent me letters saying how they thought they were alone. They thought they were the only one. My story inspired them so much and I was like hooked to like. Like the IBD community was just so welcoming and so awesome and inspiring to me and if my story could help them to know and understand that they weren't alone, then I wasn't going to stop telling it.
Speaker 2:So that's like how I got involved with doing stuff more actively in the Crohn's and colitis community and then that's eventually met you a few years in doing that and then for this show specifically, I needed a different way to share my story because I was flaring again and it became very hard, very taxing mentally, to be in person in with people, live, living my experience, but trying to downplay it so that I could focus on other people's story and challenges and helping them to advocate for themselves and teaching them how to share their story. So I think it's just the nature of working in nonprofits, especially disease nonprofits. It was very emotionally and mentally taxing for me because I was really symptomatic and normalizing that and kind of living in denial with that. So yeah, that part was hard but I needed a new way. I needed a new way to be able to support and help this community that I love so much, without that direct person to person connection that was like at that point in my life, so emotionally and physically draining for me. Does that make sense?
Speaker 1:It does. Yeah, I mean cause, of course you know I knew you at that time, that's, you know you and I had already gotten to be friends at that point and I think IBD was just such a presence in your life at that time, just because you were so symptomatic, but also because it was like because career wise, that's what you were focusing on and so you were, you know, having to travel a lot for your job. You're constantly, constantly, constantly, constantly in the community and constantly being like kind of hyper aware, and so I know that that can be, that can be too much, it really can be. And I think you know, stepping back and deciding to keep it as a smaller portion of your sort of everyday life or a smaller portion of your sort of what you're, what you decide to do for fun, professionally, whatever you know kind of, is different than and being able to kind of focus your energies elsewhere, I think makes a lot of sense. So I yeah, I know I know it got to be too much for you and and I you know to be frank and with frank with the audience, there are times where I worry that that's going to happen again with this, because we are, you know we are having to have a lot of conversations with a lot of people.
Speaker 1:We hear some really tough stories, you know.
Speaker 1:We hear people at their worst, sometimes at their worst moments and and you know, and I know that that's got to be challenging for you especially.
Speaker 1:I know you know your, your health has gone and you've been very open about your health on the show and you have had some struggles kind of, you know, with surgeries and and new, a new Crohn's diagnosis instead of ulcerative colitis, that kind of thing, and so you've kind of lived it real time with us. And so I'm curious about sharing your, your story so publicly. What has that been like? Because I think it's a slight difference here. I think this is what people maybe don't understand is I've joked about it feels like we're screaming into the void, like you share your story very publicly, but at times it feels like we're just talking to each other and nobody's listening. So it's public, but it's also sort of sometimes doesn't feel public. So I'm curious, like what has that experience been like for you sharing on a podcast where you know what's going out to people, but it really at the time feels like it's a conversation between you and me and one other person usually.
Speaker 2:Yes, even like right now, with us talking to each other. This is like an intimate conversation between friends, right? So it makes the sharing, the initial sharing of it, so much easier, even with the guests, because I like, is that one on one connection with someone? After the fact, I have told you multiple times that I don't know how many times I've said it, I'm sure it's been cut out of the show, but like I get a vulnerability hangover and once I had my first one, I do discovery calls now with our potential guests and I kind of warn them about that. I asked them about have they ever shared their story publicly before? Are they public with their story, like on their social media channels? Like I asked them how public they've been with their story, because we have had two guests that have asked us not to air our conversations because they did have that whiplash, almost that vulnerability hangover, and it's that realization that, oh my gosh, I've said too much.
Speaker 2:For me personally, when I get that feeling it's like I have a story that I have created around my IBD, things that I have cultivated that are okay for me to share, that don't affect me mentally or physically.
Speaker 2:Like this is my quick fact sheet right, my elevator pitch about my disease.
Speaker 2:One, two, three, check off the list, and you'll hear that sometimes, with guests on our show where they run through their story like this, this, this, this, this and then you and I have to like really dig in and ask questions to get more to the root of that, because they have their story down pat, right, and so I do too.
Speaker 2:And what I find on this show, because of the format of it, I am sharing more, I am going deeper, I am being more vulnerable with what I'm going through and I am deviating from my elevator pitch about my journey, and so that can be really hard.
Speaker 2:But also I feel like I should say why it can be really hard, because I feel like that might be helpful. I feel like I should say why it can be really hard because I feel like that might be helpful. When I admit it, then I have to acknowledge it and then I have to address it, and then there's all of these things that go along with that Right. So when I talk about it with you, with our guests, when I'm sharing something that's happening with me, to relate to them, to help them to know that they're not alone, all of those things. When I admit it in this way, in such a public way, it is there for me to go back and revisit, and so it keeps me accountable, but it also it does a number on me because I have deviated from my perfectly curated elevator pitch about my disease journey.
Speaker 1:Yeah, there is gosh. What is the? What is the term Like? It's like, once you speak it, it sort of becomes reality and so, yeah, it is. It's a way of admitting that something is different than you'd like it to be. So yeah that's got to be incredibly difficult. I appreciate you doing that, Robin, because I know that's, that's a challenge.
Speaker 2:Yeah, it's what I'm meant to do, I think I hope so.
Speaker 1:Because otherwise we don't have much of a show, because otherwise we don't have much of a show.
Speaker 1:Well, that's not true.
Speaker 1:We had other people sharing their stories. But I do think that your vulnerability is helpful to our guests. I think the fact that you're sharing with the people that are on the show does make it feel easier for them to share their stories. And I don't mean that in like a weirdly manipulative kind of way. I just feel like it fosters this environment of you know, like we're just telling each other stories, we're just telling each other our experiences, and it's okay to have these experiences, you know, and it's okay to kind of deny them at times and not let them have power over you when you're just not in the right place. You know they're going to rear their heads whether you like it or not, but it's you know. So I think I think you sharing the times where it's it has been a struggle for you or where you haven't been a hundred percent and you've let it kind of dwindle, dwindle, dwindle and like you've needed an iron infusion or whatever it is, is, you know, it's definitely like I think that's normalizing a lot of this experience for patients.
Speaker 2:So yeah, I hope so. Okay, we're going to switch this back to, hopefully, something that's not going to make us cry, but who knows? At this point I have to ask you if you remember number one, when you first came up with the idea for the podcast because the podcast was your idea and do you remember that first text you sent me about it and what were your thoughts about the podcast?
Speaker 1:back then. So, yes, I very much remember when I came up with this idea, because it was probably, I think, 2017, 2018. And it was because I listened to a bunch of podcasts. At that time I was driving, I think somewhat, or I maybe was commuting on the train and so I was listening to a lot of podcasts. That's just what I would do. And so I was like I didn't necessarily see another IBD podcast.
Speaker 1:My initial idea for the podcast was that it was going to be really kind of short, very factual, informative kind of podcast. I was like it's going to be really kind of short, very factual, informative kind of podcast. Like I was like it's going to be somebody talking about, like J pouches, right, you know, like one very specific thing and that's why it was called bowel moments was because it was going to be a little snippet of information that got completely thrown out the window, I think, the moment I spoke to you. But I also realized like I can't do this on my own Cause again, as I've admitted, like I'm not a person living with IBD. I love this community and I have kind of my role to play in the podcast, but it really needed somebody like you who is willing to openly share their story and who is willing to facilitate the conversation with somebody because of that you know and and who is so unabashedly open with their experiences and and you know, cause it's just not the same conversation with somebody who isn't living in the part of the community.
Speaker 1:And I get that, I a hundred percent admit that. And so I was like who do I know? Who is that type of a person? And I was like I know, robin. So I think I think I sent you a text message saying I have this idea, you know, but I'm not sure kind of where to go with it, what to do with it, and I'd like to do it, but I need, I need help. So I think that's probably the text I sent you, but I don't remember.
Speaker 2:I remember you asking me about the name and then like asking me if I wanted to do this with you no-transcript. I loved it. I thought it was perfect. I think it took me like 20 minutes to come up with our logo. I mean, it took me a little bit longer to put it together, but it didn't take me long, okay, so I'm going to build on that. What's been one of your favorite moments or like episodes? So?
Speaker 1:far. Oh God, there's so many. This is the thing like. We've published so many episodes. You know my I don't know if it's my favorite moment, but my most unexpected moment was when Dr David Rubin made us both cry within like the first three minutes of him speaking, and it totally unexpected, totally unexpected, and so I just that was such a memorable moment because he's such a big name in the IBD community and I did not know his kind of origin story and so I remember being taken aback by that and kind of having to try to get my game face back on. So that was probably one of my memorable moments. I don't know if it's my favorite moment, but I think One of my favorite episodes and this is not no shade on anybody else is Stacey the Deuce, stacey Calabro, who is an early, early episode for us.
Speaker 1:She was just so freaking funny. And what is sad and we've said this on the show before is that we keep ourselves muted most of the time so that you don't get our background noise. In fact, you're probably going to hear some background noise because I'm not muted, so my dog occasionally will bark, robin's dog will bring her a toy. You know stuff happens and so we normally so we keep. We kept ourselves muted on that show and it was. I laughed so hard and so loud that afterwards my husband was like oh my God, are you okay? When I came out of the room and so I think that's probably one of my favorite memories is just him being like what were you guys talking about? And just like cause I had, I was just open mouth laughing and you guys can't hear us doing it because we're muted, but she's just was so funny. What about you, robin?
Speaker 1:Okay, I loved our conversation with David Schwartzberg, like he was just hilarious and also like he's an absolute treasure, Like, yeah, that was one of those where I was like do I love this man? I think I love him, Like I think we just became best friends Like those where I was like, do I love this man. I think I love him I think we just became best friends.
Speaker 2:Like honestly, he is hilarious and so like just a genuinely nice person and willing to help and wanting to do the best that he possibly can for all of his patients. Like again, all of our guests have been awesome I would have to say Ashish and Anish for being like the first.
Speaker 1:It's a little bit like a Sophie's Choice when we're doing this, because it's like they're all like good in different ways, you know, and all of our guests have been so fun to get to know, so yeah, but anyway, you are. Yes, I love, I love the Doctors Patel. That was a very fun episode.
Speaker 2:But they but I mean they came on before we we had not published any episodes. They were some of our very first interviews, the timeline of the show, you guys, we actually started recording episodes in the fall of 2020. So Alicia sent me that text. We had work and you know, life and all of that stuff happened. And in 2020, I do remember this and I might even actually still have this text, I'm not sure In 2020, alicia sent me a text message with a picture of a podcast microphone.
Speaker 2:Like, look what I just bought. And I thought it was for the podcast, but it was for work, because in 2020, everybody was transitioning to, like live events, to virtual events and all of that stuff. So I said, oh, are you starting the podcast? Like, is this something that's going to happen? And you said, no, it's for work, but maybe we should. And then I immediately went on Amazon and bought the same microphone. That's how, like, we started. This conversation started in 2017, but we didn't actually take action or start recording until 2020.
Speaker 2:We recorded what? Three or four episodes and then I found out that I had to have surgery and I was going to go have surgery and be on medical leave for two weeks and then go back to be in the hospital for three or four days and go back to work, and we were just going to keep on trucking on and I ended up actually being in the hospital for two weeks Again like how I was feeling before the show started, when we first started recording. And then my life got turned upside down with everything that happened with that surgery. In case you are new to the show, I had J-pouch surgery in December of 2020. And I had all of those things that you have to sign waivers for the things that can go wrong in surgery but usually don't.
Speaker 2:That happened to me Respiratory failure, heart failure, I went septic, I was in ICU, I had an abscess in my pelvis, pneumonia, like all of those things happened, and I was ended up being in the hospital for two weeks and being out on medical leave for the entire 12 weeks that they allow you for FMLA. I still needed to have another surgery. So while all that was happening with me, we stopped recording. So everything was on pause. We didn't even know if we were going to get to do the show, and then we started recording again in March of 2021. And then we published in August for the first time. So it was like an extended, like we built up several episodes and really worked behind the scenes to get everything where we wanted it to be Once we knew I was going to live.
Speaker 1:Yes, yeah, I wasn't going to say that, but there definitely was a like I don't know if we want to start a show and then not have you there. That's a little bit weird, but also it took a long time for you to recover as well. I mean it's just, you know, energy wise, stamina wise, and this is, you know, as we've stated to everybody, this is our second job that we've given ourselves, and so it does mean we, you know, there's effort that has to go into it on both of our parts.
Speaker 2:Yes, so the timeline of the show is that, and so we started with guests that we knew and felt comfortable with. But Ashish and Anish, like we hadn't published episode one, and they were like, yes, we will be your guests and have kind of been champions of the show. This you know right from the start, and so they're always going to be like my faves. For that reason, like they just early adopters, they were early adopters.
Speaker 1:Yes, Well and that, and I have really liked our research roundup episodes. I know sometimes we get a little into the weeds on those, but I do think you know this community is so smart and engaged and so, you know, invested, and so I know a lot of the people that you and I are friends with. That's part of this community like they want to know what's happening in research and they're usually pretty up on it. But you know, one of the things we wanted to do is really capitalize on, you know, our medical professionals that are coming back from these big conferences. What do they learn? What should you know about what they learned? The evolution of there being more interest in diet and psychology and mental health and the sort of holistic view of living with a chronic illness has become much more at the forefront of a lot of these conferences. So that's been fun to see. I don't know, we just have so many good guests it's hard to-.
Speaker 2:We do. I will say that because we had pelvic floor on, I started seeing a pelvic floor physical therapist. So I mean I had already been seeing a therapist because of just the recovery from that experience, that medical trauma, but so I started seeing a pelvic floor physical therapist too. I hope that, like those kinds of shows have helped everybody to understand that I mean, even if you don't have surgery, like the amount of times that we go to the bathroom a day, you should probably be working with a pelvic floor physical therapist. It's mind-blowing some of the stuff. So I like that we took that approach and really wanted to talk to everybody that serves the community and not just focus on GIs and patients.
Speaker 1:Yeah, and I think even just having surgeons on to help really demystify that, I think a lot of people say it like it's last resort kind of thing, when the you know the reality is it needs to be another tool in the toolbox and that you know.
Speaker 1:Getting to know a surgeon and finding the right person that you're really comfortable with and you feel like is going to understand you and your case and that you like, is another big thing. You know, I would much rather have that person lined up in the event I might need them, instead of having just an emergency like oh God, I have to have surgery, just whoever is on duty, kind of thing. So that, to me, has been another kind of important lesson that I've learned. As you know, don't think I can. I don't think I can because I do feel like we have grown a lot. But I am curious because I have had so much fun doing the show with you, hence why we're still doing it and not getting paid for it, in fact paying money to do this. But I am curious how do you, since you have gone back and listened to some of our initial episodes, how have we grown as a show? Oh my gosh.
Speaker 2:So first of all, kudos to you because you do the production, the editing, adding the music, the intros, sometimes the outros. Like you guys, if I had to edit the show we would never have published because I could not stand to listen to my voice for the first few episodes that was definitely something it takes some getting used to.
Speaker 2:It takes some getting used to. I always feel like I'm so freaking loud and I'm like Alicia. Can you please turn down my volume? I am obnoxious. Can you please make it like to where I whisper or something? I don't know how. I guess I'm just for Seinfeld fans. I'm a loud talker, I don't know what else to.
Speaker 1:I don't know what else to say about it. The other thing for people to know is that you do have a tendency to, when you want to make a point, you lean forward where your microphone is, and so there is that. I have noticed that because I also watch you and during the show and like, and then you'll be like let me tell you, and you're like right up into the microphone, which, sorry everyone, I'm sure I just blew out your eardrums right there. Yes, but it's, it's funny. I think it's funny every time, so I don't say anything.
Speaker 2:I have something to say and I want to make sure you hear it. I mean, I don't know. So you have like just the, the editing on the shows, from show one to show 125, the work that you have done and like taught yourself how to do, and all of that is just like mind blowing to me. In order for us to have, like, our show get better and better and better, I started to have the discovery calls with our potential guests so that I could prep them a little bit more. After we talked to somebody who had never really shared their story like this before and we just did it cold. Um, we'd only had email communication with them and we ended up having to rerecord an episode.
Speaker 2:I felt like I needed to start prepping our guests a little bit better, because that part falls under my purview, and so I feel like that has helped our guests understand what we do and they get like a pre-run sharing their story with me first and I get to ask them questions and I get to point them in directions that we may go on the show so they can be prepared for it, to point them in directions that we may go on the show so they can be prepared for it, and so I feel like that has helped prepare our guests better and help them feel more comfortable when they get live with us here on Zoom, and I think that the fact that the people who have been guests on our show recommend their friends or people they know or people they follow, like the other accounts they follow, that inspire them.
Speaker 2:We've gotten some really good guests that we would never have known or been introduced to if it hadn't been for people that were already willing to share their story with us, so I feel like we're able to share more diverse stories and experiences because of that.
Speaker 1:Yeah, that is a huge compliment when one of our guests shares the show or when they when they recommend that somebody be on the show with us, because it means they had a good experience. And it's hard to know. I mean, I've said that we don't get a ton of feedback, and so it is nice that is. The one piece of feedback that we do get is that when we have our guests say, actually you should talk to this person or I'd like to come back again. Even the people that have said I'd love to come back on your show. So that's such a new people, different people, and you know, and helping us provide voices that we haven't yet, and that you know people that maybe haven't been on other shows too. So that's been, you know, a big part of your job and it's been a huge asset to the show as well. So you're doing a great job. Robin, I guess I'll keep you around.
Speaker 2:I would also like to give a shout out to our guests hosts too, like Stacey has been a guest host and Derek Dodson has been a guest host and Hannah has been a guest host. Lauren Erbuck-Larnfield has been a guest host. Like that has been awesome because look you guys, for a while there we were doing episodes every week, which is cuckoo for Coco Puffs. When we talk to other people who do podcasts, we're just the two of us and we are pumping out episodes every single week with our travel schedule for work and all of that. So we're glad you're still sticking with us, even though we're going every other week. But because of that we did have to call in guest co-hosts sometimes. So we're really grateful for them and their insights and their willingness to jump in and penchant for one of us.
Speaker 1:Yes, yeah, it's been fun to have them on too, just because you know just a difference in how we do the show. All right, well, robin, we have celebrated the good times of our show and recognized you know kind of how far we've come. But I want to talk about the future. So what do we want to achieve? What do you think our goals should be? I mean, it's in the era of goal setting, right.
Speaker 2:Like we're doing, manifesting what's the future of our show. I mean always sponsorship somewhere, somehow. But we need a lot more followers and listeners for that. I know that, a lot more downloads to get to that point, but that would be like you know, rainbows, unicorns, glitter, confetti that's like pie in the sky kind of thing. Oh golly. I want to share as many diverse stories as we can, all kinds of diversity like disease experience, community experience, cultural experience. There are what? 3 million estimated, 3 million patients in the United States and 10 million worldwide. Is that correct? You can fact check me on that. So I feel like there's just so many more stories that we can share, and I appreciate that we've been able to share some international experiences too. I feel like that's been important, but I just I want to keep helping people to share their story. If you could interview anyone, alicia?
Speaker 2:if you could interview anyone you do, but I but you. I want you to add like a you are like the interviewer, I feel like you're the interviewer and I'm like color commentary sometimes. So when you do yours, I want to know, like if there's somebody that you like, your dream person that you'd want to interview.
Speaker 1:Oh okay, so who would I, who would I want to interview? You know, I thought about that, that's like. I think there are some folks like that are like. Sunny Anderson, for instance, is a really interesting person for us to potentially like that I think would be really fun to get to know. A she's really funny, so I think we just really enjoy talking to her. B she has such a public facing job and her jobs are things that I just kind of go or don't feel conducive to having ulcerative colitis, and so I would be really curious to get to know her and her experience of being on television but also being a chef and all these things. And so you know we've talked to a chef with IBD, obviously Abigail Marie, the chef with IBD, you know it. Just I think it could be really interesting to get to know her.
Speaker 1:You know Mike McCready is another one that I think would be really fun to get to know. Just again, same thing. He has such a job where you're on stage. You can't go off stage whenever you feel like it. You're in the middle of a concert, right. So those are people that I just kind of say they have such interesting jobs as it relates to being a person who may be symptomatic or may have this type of disease, also just being on the road and traveling and all these things like how do they navigate all of these things. So those are folks that I think could be really, really fun to get to know. I mean, david Rubin was like our number one. We'd love to get to know you guest and we'd be interviewed him. So I think that's, you know, that's great.
Speaker 1:But I know we have a ton more healthcare professionals that we haven't talked to. So I would love to talk to even more of our folks, even more of our people that are involved, especially in some of those sort of areas that we have touched on but haven't spent a lot of time on. And so I think people like nurses and PAs we haven't had as many conversations with them. So maybe some of those folks just talking about kind of how their role is different within our community than it is for, like the gastroenterologist that's scoping them we had a conversation about potentially bringing in an endoscopist, and so some of those people that are just really involved. I think the other thing is just navigating. Health insurance is so freaking complicated. If we can find somebody who can really help us talk about, like kind of maybe somebody who's even an insurance insider kind of person that could really talk to our community about how to best navigate the healthcare system, could be super, super valuable. Personally, I think that would be really awesome.
Speaker 1:Vision-wise for the show, I would love to be able to do some commercials. That's one thing I sort of have had on my radar and, just in typical Alicia and Robin fashion, haven't had the capacity to really do because it requires me to write the commercial, record the commercial, convince you that you need to help me write this and record this commercial and find time that both of us can actually do it, and so it just hasn't happened. Also, it would require us to spend some money as well. So that's another one that I think it would be fun to do some commercial. The other thing that my putting it out into the universe is that I would love to be kind of media for one of the conferences.
Speaker 1:Scrubs and Heels is a really cool organization that works with women in the GI space and I think it'd be really fun. We happen to be women we're not GI professionals, but we happen to be women and Robin has IBD, so I feel like that qualifies her. So being able to be kind of on the ground commentary and to be able to record some of these conversations with people, kind of live as they're happening, would be super cool. Do I know how to do that? No, not yet, but we certainly could learn it, and so that's another sort of vision I have for this. But I have so many more and I need to stop talking because eventually we'll our show is going to be six hours long.
Speaker 2:I do love those. I would love to put us in to moderate some of those conversations at the conferences. I think that it would just be chef's kiss.
Speaker 1:I think us at like DDW moderating a panel, come on, I mean get on board with the vision.
Speaker 2:Everyone get on board with the vision of this happening.
Speaker 1:ACG, aga. Come on people. Is there anybody on your wishlist so?
Speaker 2:there's two people that I would love to have on the show and they're both like influencers One, kim Holderness the Holdernesses, kim Holderness oh, they're so funny, they're so funny. And the other one, her name is Rachel Elizabeth Slocum. She does positive affirmations, she is an influencer on TikTok and Instagram and Facebook and all that, but she, she has IBD. She's talked about it, but that's not what her um, she also talks openly about being a recovering addict, and so I would love to talk to her about managing IBD and being a recovering addict and also like why did I not come up with positive affirmations like I I mean, she does it like she's trying to get thick, but I'm like I need to have positive action. I need to like give my, my booty a little pep talk about you know, stop trying to kill me, you know. Those are my positive affirmations today. We're not going to go to the bathroom 15 times. Are we New booty Judy? No, we're not. We are, but that's just the stage of life I'm in right now. So she is so freaking funny.
Speaker 2:I just I think that she would be a good guest on the show and it's something we haven't addressed. How do you manage that? Like the pain and everything that comes with IBD, and then you're recovering. So you really shouldn't be taking those kinds of medication. Rachel, if you listen to our show, I would love to have you on here. When you started, when you thought about this and you thought it was going to be little nuggets. Even when we started interviewing people, we thought it would be what?
Speaker 1:30 minute shows. Oh my God, I think we said it in our first episode. It's like it's going to be little. 30 minute episodes is our vision, and even that episode wasn't 30 minutes.
Speaker 2:Yeah, this is par for the course for us.
Speaker 1:This is the reality, though, is that very, very quickly, I think you and I both realized that once you start asking people to share their story, there is so much to every person's IBD story that just getting them to share their story is 30 minutes alone, and asking any questions afterwards is just gravy. And so you know and that's the part we want to be able to dive in more and ask questions and sort of get to know these people really well or as well as we possibly can in 45 minutes to an hour. And so I think we realized, for basically the second episode, that 30 minutes is a silly vision because it just has never happened. So there's just so much.
Speaker 1:There's so much to each of these stories and it needs to be heard. It can't just be like I have IBD. End of story.
Speaker 2:That's true. I am going to flip the script on you because you've never had a chance to answer this question. So, alicia, what is the one thing that you want the IBD community to know?
Speaker 1:It's all stuff that has been said and it feels very trite, but that number one you're not alone. I think that's the one thing that we've we've heard from. This is like even when you were talking about, like getting involved with Team Challenge and you sharing your story in the newspaper and how many people feel so isolated and alone. And that's one of the reasons that we do this show is that we want people to to feel like they're not alone, and that there is another story that somebody that has had a similar experience to you and so you can kind of feel it sort of normalizes the disease, and so I think that's number one. Number one I think the other thing is that the importance of building the right healthcare team around you. If you can get a team, which is not always possible, but at least creating a really good relationship, or finding a GI professional, either a gastroenterologist or a nurse practitioner or a PA that you really trust, because this has to be such a long-term relationship with that person and there's going to be ebbs and flows and ups and downs and it's going to be probably your primary person that you're talking to.
Speaker 1:What I have seen happen in a lot of different chronic disease states is that you start out with your specialist. Anything happens. You start with your specialist and you go down from there. You know it's sort of it's not like you start with your GP and you escalate up it's. You start with it Is this my Crohn's? It's not okay, what is it now Like? And then you move on kind of from there, unless it's just so obviously not your Crohn's which Crohn's is a bitch? It kind of just throws all sorts of crazy curve balls at you. But I think you need somebody that's going to be okay with those, like you know, my chart messages like oh my God, is this something I need to be concerned about? If you don't feel like you have that, then you need to try to find somebody that really is going to become your partner in this, Because I think so much of your quality of life and your confidence in your disease management is going to come from that relationship. So I think that's probably what I would say.
Speaker 1:The other thing I would say and this is we say this a lot is get involved in advocacy, you know, even if it's just talking to other people about your experiences. But legislative advocacy is so key, and I feel like legislative advocacy especially makes you feel so empowered with a disease that takes so much away from you. It gives you something to sort of take that back a little bit, and so to me, like that's another thing. So I have three pieces of advice, and I'm not saying one, it's our show, we can say it, so get involved in advocacy. Robin, this has been such a great conversation. Thank you for talking me into it, and I am so excited for everything that we've got planned for the future and I'm so excited for our manifestations to go out into the universe and come back to us, because you know fingers crossed and I can't wait to see how we keep this podcast growing and to see all of our new guests join us.
Speaker 2:We have already have a good lineup for 2025. We only have I don't know a little bit more than a handful of spots to fill to get all 25 shows. So I'm very excited about that and I am so grateful that you did ask me to do this with you. It's been just the best experience. I'm so glad that you're my friend and we stayed friends and to our listeners, thank you. You guys are going to laugh if you listen to this show.
Speaker 2:Thank you for being on this journey with us. Don't get triggered, anyone. Your support literally means everything. If you have questions for us that you want us to answer on social, if you have suggestions, if you have topics you want us to cover, please send them my way. You can email me at robin at bell moments podcom or hop Uber to at bell moments pod on Instagram and send me a direct message. I will get it. I'd love to know what you want us to talk about, what you want us to ask our guests about, what you want more information about so that we can make the show better for you.
Speaker 1:Well and in typical fashion. Don't forget to subscribe to our show and, better yet, make sure you share it with your friends and family. We want more and more listeners, so please share it with folks that you think that would be interested, and also feel free to leave a review If you have something nice to say, please, preferably please leave a review for us, because definitely I know I read reviews on shows before I listen to them. So if you have some nice things to share, we would love to have them on our reviews, please.
Speaker 2:So thanks, guys, because I want you all to be part of these important conversations. Thanks for listening, everyone. Until next time. Cheers.
