Meet Stephanie A. Wynn- From Diagnosis To Direction

The hardest part isn’t always the pain; it’s the fog—those days when the labels keep changing, the meds blur together, and the bills are louder than your body. That’s where Stephanie A. Wynn stepped in, transforming her Crohn’s journey into a movement for clarity, access, and equity.

We sit down with Stephanie—author, podcaster, and founder of the Stephanie A. Wynn Foundation—to unpack how a misdiagnosis spiral, two heartbreaking pregnancy losses, and a sixth GI finally led to answers and action. She walks us through the IBD Patient Navigator Program she built to connect people with the care team they actually need: GI, primary care, mental health, dietitian, pelvic floor therapist, and, when needed, a colorectal surgeon. We talk about practical tools that change outcomes—recording appointments, coming with three priority questions, tracking symptoms and meals, and learning your labs so they can become signals instead of mysteries.

Stephanie also opens up her book Navigating IBD: A Six-Week Blueprint for Better Gut Health which she designed to slow overwhelm and teach the language of care including treatment decisions, and what “knowing your numbers” truly means. We dig into clinical trials—why she calls it clinical research, how to qualify, what to ask about aftercare, and ways to participate through labs or tissue samples to boost representation. We tackle health disparities and social determinants of health head-on: transportation, refrigeration for meds, school support, and why trust is built by showing up with real solutions.

This is a conversation about agency and community for anyone living with Crohn’s disease or ulcerative colitis. You’ll leave with a sharper checklist, a stronger voice, and a reminder that you are not alone—and that the right tools and team can change everything.

If this helped you, follow the show, leave a quick review, and share it with someone who needs a clear path forward today.

Links: 

• Link to Stephanie's IBD book
• The Stephanie A. Wynn Foundation
• Racial and Ethnic Disparities in Medical Advancements and Technologies- Kaiser Family Foundation 

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Chapters

• 0:00 Meet Stephanie A. Wynn
• 2:30 Drinks, Warm-Up, And Purpose
• 3:50 Misdiagnosis And The Sixth Doctor
• 9:00 Costs, Assistance, And Access
• 12:30 Founding The Patient Navigator Program
• 17:20 Building Your IBD Care Team
• 20:40 Training Navigators And School Support
• 23:50 Inside The Navigating IBD Book
• 29:30 Labs, Numbers, And Self-Advocacy
• 34:30 Clinical Trials And Trust Barriers
• 40:10 Access, Logistics, And Equity
• 44:30 From Author To Nonprofit Founder
• 47:30 Final Advice And Closing

Transcript

SPEAKER_01: 0:00

Hi, I'm Alicia, and I'm Robin, and you're listening to Bow Moments, the podcast sharing real talk about the realities of IBD. This week we talked to Stephanie A. Wynn. Stephanie is a podcaster, an author, and also founder of a nonprofit organization, and she's living with Crohn's disease. The Stephanie A. Wynn Foundation has a mission to eliminate health disparities and improve outcomes for the IBD community through comprehensive support services with priority for underserved populations. She also wrote a book called Navigating IBD, a six-week IBD blueprint for better gut health. She also has a podcast called Navigating IBD with Stephanie A. Wynn. We had such a great conversation with Stephanie, learning more about her foundation and her life as an author, and so much more. Cheers. Hi, everybody.

SPEAKER_02: 0:51

Welcome to Bowel Moments.

SPEAKER_01: 0:52

This is Robin. Hey everyone. This is Alicia. And we are so, so delighted to be joined by Stephanie Wynn. Stephanie, welcome to the show.

SPEAKER_00: 1:00

Thank you. Thank you so much, Robin and Alicia, for having me here this evening.

SPEAKER_01: 1:04

We are very excited to talk to you because there's so many things that we have already started talking about, but that I can't wait to record. But our first very unprofessional question for you is what are you drinking?

unknown: 1:15

Oh, good.

SPEAKER_00: 1:16

I am drinking some Callaway Blue spring water with a drop of non-hydration tablets. Because you know, I can't just have spring water without the hydration. So I need a little bit of help there.

SPEAKER_01: 1:30

Smart. Does it have a little bit of flavor to you? I find that that's helpful for me.

SPEAKER_00: 1:33

Actually, yes. So it's the non-strawberry lemonade.

SPEAKER_01: 1:36

Robin, what about you? Yes.

SPEAKER_02: 1:38

First of all, I'm on my little staycation. So I'm drinking my bubbly water out of a fancy glass because I can. I have cherry bubbly water with a little squirt of lime and also my regular water because hydration.

SPEAKER_01: 1:53

I love that you're doing a staycation. It's very, very well deserved, Robin. I got real excited and I am drinking a coffee Blavardier. So I think I may have got it slightly wrong because I think it's supposed to be sweet vermouth, but mine is like vermouth rose. So it's it tasted sweet. So I went ahead with it. So we'll see. So cheers, guys. Cheers. Cheers. Cheers. Cheers. Stephanie, next question for you is tell us your IBD story. What brought you into our community?

SPEAKER_00: 2:18

So I am a podcaster, but I also like to listen to podcasters. And two of my friends, Natalie and Tina, they are patient advocates in the IBD space. And so I was like, you know what? I would love to be on your podcast because I'm always for those that are going through this journey of IBD, when you hear, see, I know this sounds weird, but anything Bowel, I'm just glued to it. Like, because I want to know the details. And it was a really good episode that I came across. And so I here I am. I sent the email to see about being a part of your platform. And I hope that you and Robin can join me online. But you know, IBD, once you're diagnosed with it, it becomes like a part of you. So you're always looking to learn from others and and and hear their journeys and their stories about like how do they get through, you know, this this journey. And so here we are.

SPEAKER_02: 3:17

Can you tell us a little bit more about your personal experiences with IBD? Because we're gonna dive into all the amazing stuff that you have done. But we always like to take everybody back to the beginning.

SPEAKER_00: 3:29

Absolutely. Thank you so much, Robin, for that question. So in 2017, I was diagnosed with it was Crohn's colitis. I was first told it was Crohn's colitis. Then I was told that it was Crohn's or it was colitis with Crohn's involvement. And then I was told that, you know, I'm not quite sure. I think it's Crohn's, you need to do a biopsy, I need to, you know, to rule out colon cancer. And so I'm like, oh my God, what do you mean, colon cancer? Like I'm just like I'm freaking out. Nobody could give me a direct diagnosis until I got to the sixth doctor. Prior to getting the right diagnosis in 2010 and 2011, I was pregnant and I lost two daughters. Nobody could tell me why. They just said my body rejected the baby, but not knowing then I had high inflammation markers. And so it wasn't until I got to my GI doctor now, the sixth doctor, where he looked at my records and was like, Hey, did you notice that your ESR and CRP CRP numbers were high? They were elevated. And so that kind of like the light bulb went off. Okay, maybe that's why my body rejected the baby because we had some autoimmune going on there. And so it was going through that journey where I and going getting the different diagnoses, I was told that, hey, you know, you got an option. You want to be on one biologic or another biologic. And so I was like, I don't want to be on either one. What is this? Like, what is Crohn's disease? How do I get information about this? Because I've never heard of this. And so there was nothing. I just get was given the option to take two different types of medication. And so I was like, oh, well, before we even do that, let me go and do some research. And so I went down this rabbit hole and it was just research and it was just research, but it wasn't enough research for me to make an informed decision about my health and what was best for me. In the meantime, I started, I was told um by one doctor you need to stay away from fast food restaurants and toilet paper. So I did that. I went on this like crazy diet. I started doing keto, all of these diets, vegan, vegetarian, is so much that I got down to like 112 pounds. And my GI doctor, I told my primary, I was like, listen, you gotta help me. Something's wrong. Like, I'm losing it. Like, I don't I don't even weigh enough. Like, and so she was like, I need you to calm down, but we're gonna get you some help. You can live with this. Let me refer you to a GI doctor. And she did, and that's where I found my six, the sixth doctor. And when I got there, I mean, my mom was like holding me up. I could barely walk in that doctor's appointment. And so he was like, Well, where he's like, I've been waiting on you. Where have you been? And I was telling him about this last doctor that I saw. But she had me on these, she wanted me to start taking these keto packets that you put in your water. Like, and so I pulled out my purse and I dumped it on his desk. And he was like, What is that? And I'm like, I don't know. He was so angry. He was like, I'm taking it from here. He was like, Why would she give you that when you're already a hunt? You're malnourished. Like, she can't see that. And so he's like, Miss Miss Wynne, I promise you, if you just trust me, I will help you get better. And when I tell you this doctor, like I love him so much, he is so amazing. He did just that. I'm actually overweight now. Like, I gotta lose the weight because I've gained so much weight. And so when I go to my appointments now, it's like, hey, doc, I know, I know that scale says something bad, but he was like, Look, I'm just so glad that we're here. You know, we can work on that. But I'm saying all that to say I didn't know. I didn't know the questions to ask. I was so confused about these big words. I didn't know what inflammatory bowel disease was. I mean, I've heard of IBS, but IBD, that was something different. And I remember my cousins, I have two first cousins. They were diagnosed when they were young. And so I just, I don't know. I just, it was like a I blanked it out. I didn't think about it. But as of today, I have a cousin who passed away last September from Crohn's. And so that really like opened up my mind to say, hey, like this is gonna help me push forward. But I going through this journey, just to get back to your question, Robin, going through this journey of ups and downs, not understanding what questions to ask through this process. I had insurance and I was underinsured, but I needed to see this same doctor. I'm like, I don't care what it's gonna cost. I need to stay with this doctor because he knows my condition. And I didn't know I was going through step therapy. I didn't know that was what I was going through. I didn't know that there was a patient assistance program, but I was underinsured, so I had to pay upwards of a thousand dollars out of pocket for my infusions in the beginning. So I started getting infusions, and it wasn't until one of the nurses at the doctor's office was like, hey, listen, when you go back there to the doctor, I need you to ask him for the patient assistance program because you're the only patient paying this kind of money out of pocket. And that's when the light bulb really went off. I was like, wait a minute, there's somebody else going through this like me. And they don't know to ask the questions. I never knew that there was a patient assistance program. All I wanted to do, Robin and Alicia, it was feel better, right? And so it was there. My mom, I was like, mom, I never knew about this. And I felt so like I fought it, I fought myself because I didn't know the questions to ask, I didn't know what to say. And so here we are, not knowing. So it's now 2020, and now I'm finally getting some relief with not worrying about do I pay my bills or do I pay for this medication that I need to live? Right. And so that's where I was. And I'm like, you know what? We got to help somebody else. We got to set up this IBD patient navigator program. And my mom was like, maybe you should start a nonprofit or something. And I was like, I don't want to do that. Like, I and my, I just wanted to help the people. I just want to help the people. And I'm like, well, who's gonna listen to me talk about my bowels? Who's gonna listen to that? Right. But then one night I just I said, okay, I gotta do this. Like, I gotta help those who can't speak for themselves. And specifically, like, I believe that there should be equality for all people, right? But what I do know is in the black and brown community, it's because we have not had good results with providers and the trust issue isn't there. And it's not because we don't want to trust providers, it's just that providers aren't educating us. So there's a lack of education in our community and access to this education. And so that was my journey. Losing my daughters was really devastating because I fought tooth and nail to try to figure out why this happened to me. Because I already had two older sons, and my pregnancies were good with them. So I just couldn't understand why this happened. And so for years, I just was in this depressed state of mind because I felt like it was something that I did that I didn't do. And so what should have happened is, and that's where maternal health comes into play with IBD. You know, some patients are told that they can't have kids when you're on certain medications when you have IBD and you're pregnant, or you want to conceive a child. And that's one of the things that we want to tackle as well, like maternal health and IBD, because women, as women, we go through so much. Going through this, not only did I lose the kids, but I went into this depression, this depressed state of mind, because I had postpartum. And then once I was diagnosed with Crohn's, I went through menopause. So it pushed me into like menopause. And when I had when I had the lab work, my um labs were like the the doctor was like, Hey, you don't have to worry about another cycle for the rest of your life. Like, you're fine. I mean, I was happy because I'm not gonna complain about that. But I'm like, I'm young, you know, I'm young. She was like, but be careful because you still may be able to conceive a child. So I'm like, oh my God. So it was just those things like just the unknown and the back and forth. And so that's how the Stephanie A. Wynn Foundation was founded and the IBD patient navigator program. It was founded due to my near-death experience with IBD, going through the six different doctors, not knowing what questions to ask, the barriers to healthcare. Our goal is really to help those who are diagnosed with this condition, help them navigate the healthcare system simplistically without the overwhelm. And so, even further, that prompted me to write the book Navigating IBD, a six-week blueprint for better good health.

SPEAKER_02: 12:10

I mean, you know, I like to throw in my caller commentary too. Even after you've been living with this disease for, in my case, 26 years, you still have periods of when you're starting to flare again or something new comes up that you haven't experienced before, not knowing what to ask the doctor, not knowing if you have the right doctor for the situation that you're in, not knowing.

SPEAKER_01: 12:31

So I feel like not knowing what you're experiencing as your IBD or something else. Or something completely, something else completely.

SPEAKER_02: 12:39

We could go down, look, talking about hormones and IBD is like my I could go down so many rabbit holes, get on the soapbox. I just anyway. Anybody, if you're a researcher and you're listening, we need more research about hormones and IBD. Okay, thank you. Stepping off of the soapbox with the patient navigator program that you have, is it predominantly for those newly diagnosed people, or do you feel like it could benefit people who are just navigating new symptoms, new experiences, new anything? Or is it really like this is your insurance coverage? This is the questions that you should ask. Is it like a blueprint when you first find out?

SPEAKER_00: 13:16

So our IVD patient navigator program, it's inclusive to all that are facing systemic barriers to healthcare. So even men, and we've just recently found out that men have issues with, you know, getting the questions asked or understanding the treatment because you know how men are, they're prideful. So they don't, they're not as open to talk about this condition. And so sometimes they recluse. And so what we do is we partner with GI doctors. So our goal is to partner with the GI doctors with our IBD patient navigator program. So when they come to their office, they have a patient, whether they are a referral or they're getting a second opinion, they can already have IBD, Crohn's, or osidive colitis, but they refer them to our program so that now we can help them. And then the patient is assigned a patient navigator. And so what happens is we make sure that they have a primary care doctor within the first 45 days. Because here's what I do know, Robin, is sometimes the patients that come through our program, they don't have a pro, they don't even have a healthcare team. They have a GI. They went to the ER, they saw the doctor there, they saw the house GI doctor in the hospital, but they never followed up on the GI referral. So what's happening is they're seeing this patient again in three days because the patient isn't following up. So now we have an issue now that because the patient isn't managing their condition well, because they don't know. And so they think that the hospital, the emergency room, is their primary care doctor. So what our goal is really to partner with the emergency rooms, you know, the local hospitals, regional and national hospitals, and say, hey, if you have a patient that comes through there and they have inflammatory bowel disease and they're not quite sure, send them through our program so we can educate them. And so what we do is this um blueprint is it's going to educate the patient. So when they hear the terms of biologics, biosimilars, biomarkers, Crohn's disease, inflammatory bowel disease, or IBS or osteopolitis or remicade or you know, jack inhibitor. Do they do they know the difference between the two? In the book, we don't talk about you should take this medication over that medication, but they're going to hear these terms and they need to understand what the terms is. Like Remicade is in flexomab and REMVOC is a Jack Inhibitor. So you need to know the two. There's a difference. And so I didn't know that, but I was expected to know this. But I didn't go to medical school. So this is why I didn't want to waste any more time. My goal was to, I'm going to get my cert, get certified as a patient, certified patient leader. I need to get in these rooms with these doctors to let them know, hey, this is our program. So what we did, we created a monthly peer support group, not just a support group where we're just, it's a pity party if you're we're crying or we're, you know, depressed. No, we're here to help you. What's one issue or challenge you're having right now in your healthcare journey? And we're gonna talk it out. Let's hash it out and let's get you some help and let's get you some support. We've had people from London join in on our support group. And it's it's it's pretty much a peer support group because even though these patients are going through the ER or urgent care, one thing I do know, Robin, is you're going to need a healthcare team. And that should be a primary care provider, GI doctor. You may need a colon erectile surgeon, you might, but you definitely need a mental health therapist that focuses on chronic illness, right? And a diet and nutritionist. That's your team. That's the base of your the basics of having your healthcare team. And I think that if GI doctors or primary doctors, if you're referring out, these patients need those things so that they can make better informed decisions about their health and be included in the shared decision making. And that's what me and Alicia were talking about before we started. Like patients should be included in the shared decision making when it comes to their health. What I'm seeing is that they're not being included. Doctors are making decisions without the patient being in the room. So if the patient is not progressing in a positive way, that's because they're not in the room, right? So that's the difference. So we do see, you know, patients who currently already have IBD, and we see new patients who are recently diagnosed with the condition as well.

SPEAKER_02: 17:43

Nice. I would also argue that your team should include a pelvic floor physical therapist.

SPEAKER_00: 17:49

Yes.

SPEAKER_02: 17:49

Whether you're a man or a woman, if you're going to the bathroom that much, you your pelvic floor is under duress.

SPEAKER_01: 17:56

So I would argue that you need that as well. Yeah, that's definitely hard to come by, unfortunately. That along with a therapist that's trained in chronic illnesses are tough, but definitely worth finding and great to have patient navigators, you know, IBD patient navigators like yours to kind of help with those referrals and help to be able to find connect people to resources that are there. I'm curious, what like if somebody were interested in becoming a patient navigator, IBD patient navigator, what's the training like? Do you have a training protocol that you put people through?

SPEAKER_00: 18:24

We train our patient IBD patient navigators. They go through a four-week training. At the end of the training, they get certified, they get a certificate of completion. So now they're ready. And we train them on patient advocacy, but we also tailor it to inflammatory bowel disease. We take the navigating IBD portions of that, we turn into a training opportunity because a lot of um IBD patient navigators, they may not have heard of IEBD. Or I've had nurses reach out to us and say, hey, we would love to go through your training, but they they've heard of Crohn's disease, but they don't know how to support students in schools who've been who's been diagnosed with Crohn's disease. So we're seeing a lot of students, you know, they're not being supported in school, public schools specifically, because the nurses they haven't been trained on yet.

SPEAKER_01: 19:12

Yeah, that's really important. And it's interesting to see the different people that come to you to get that training too, that you kind of go, okay, there's another need. Unfortunately, it feels like there's just a lot of, I'm I would imagine it's like putting your finger in a dam that's starting to break. You sort of, you know, you keep poking holes. Okay, so that's so that's very cool. And I'm guessing there's a lot of like helping people connect with resources about like patient assistance programs and support your support group and other opportunities. That's really fantastic. What a what a service to be able to have somebody to kind of walk you through. So is most of this done virtually, or does this like if you happen to be in the same city as your patient navigator, would that person come to an appointment with you? Or how does how does that kind of work?

SPEAKER_00: 19:48

So usually we do the vert the training, the four-week training is virtually online because I, you know, I'm we respect everybody's time. And so virtually we do it in person now. So we're located in the state of Florida. So what we do is we're in the out of the Tampa Bay area. So we'll do the four-week training, and then at the end of the training, we all will meet up. And so, so our goal is really to take this training not just locally, but take it regionally and then nationally to different organizations. So if if an organization wanted us to come and say, hey, we want you to come and bring your training to us where we could train the providers on how to communicate with patients with IBD uh in the black and brown community, we definitely can do that. So, yeah, so that's a portion, another aspect of our IBD patient navigator uh program as well.

SPEAKER_01: 20:39

I would love to circle back to your book because anybody who takes the time and energy and effort to actually write a book is always somebody that I I sort of admire and marvel at because I don't have the patience nor perhaps the capacity. So tell me about it. Sounds like a lot of this was like I have to actually write this down and make it available to people, but what prompted you to write the book? And then could you give us a little bit of a sneak peek about what's in it?

SPEAKER_00: 21:02

What prompted me to write? This is actually my third book. So I'm an author by that's that's my thing. I love to write. Yes, but this one, this book, and in the beginning, I wanted to just write about my story going through IB, the way I was treated. And then so it wasn't until I went to a patient advocacy training last October in DC, and I noticed that they were asking questions that patients didn't couldn't answer. And so that's when the light bulb went off. I'm like, oh, this is not gonna be it's it's about me, but it's this is bigger than me. Like, this is to help the actual patient understand. Like, do you know your numbers? Do you know when you go get a lab? If this doctor is ordering all these labs, do you know what your iron levels are? Do you know what your ESR markers are? Do you know what your CRP levels are? So in the book, I break down what those terms mean. We hear these acronyms all the time in the medical and the healthcare industry. But what does that really mean? And so what we did, what I did was I'm like, okay, I need to put this in a format. It's a six-week blueprint. So let's just say in six weeks, it may take you six weeks to see a GI doctor, depending on how severe you are. So in that six-week time, you have this blueprint. We could talk about the diagnosis in the beginning. And so you write down, okay, what medications are you on? So you can write those down. So when you go and see this doctor, or maybe you're getting a second opinion, you can provide him with the symptoms. Because sometimes we can't remember how we felt yesterday. I mean, how I felt an hour ago, I mean, I was in the bed because I didn't have I was tight, right? But we can't remember some of us can't because we have brain fogs, right? And so that's one of the things we have a meal tracker inside of the book. So you could track your meal. So if you ate something that day and it didn't agree with you, how did you feel? What was it that you ate, right? What is the medication you're taking? How often do you have to take the medication? And so, what was the symptoms as a result for taking that medication? So now when you go into the doctor's office, you can refer back to this blueprint and say, hey, on such and such date, I took this medicine. This is how I felt, right? Another thing in the in the guide, too, is I put together questions that patients should ask themselves, like, How did you feel today? How did you feel when you were diagnosed with this condition? These are reflection questions. And the reason why I asked these questions, because nobody asked me these questions. Nobody asked me how I felt. I couldn't explain to my family members how I was feeling because I didn't know how to explain it. All I know is my stomach hurt. But I do know this. If Robin goes to the doctor and says, hey, doc, I have cramping in my stomach, I have the urgency to go to the bathroom. Uh, when I go, there's blood in the stool. But for me, I was so ashamed and embarrassed, my stomach hurts. That's all I could tell you. That's because I didn't, I was just so overwhelmed with so much, like I didn't know what was going on with my body. So I put these reflection questions after each chapter so that they can look at, go back and reflect. Okay, this week I'm gonna focus on this. So I each week I give them a song of the week and I give them a word of the week in affirmations because when your hormones are out of whack and you're going through a bad flare, you can't stand this. I couldn't stand this the sound of anything like music, the door opening, somebody blow their horn. Like it really bothered me. Like sound was it was really horrible. It was, I just can't even explain it. But what I did was I'm like, okay, this is going to help this person get through the week, this song. And I created songs based off of the title of the chapter. Now, I also talked about what clinical trials are because nobody told me that I that was an option for me. I was never told that a clinical trial was an option for me, that I even qualify for a clinical trial. And so I think sometimes in the black and brown community, because of the Tuskegee experiment and even other things, we weren't explained or we didn't understand when it comes to these chronic illnesses. We don't, we don't know what they really are and what are the causes, so that we can here we go back to that decision making, so that we can make a decision if we want to partake in this research. And so, what I do know is that the medication, I failed a lot of medication, and that's because black and brown people are not showing up in these clinical research opportunities, and and we got to change that a hundred percent. Please, yes, we have to change that. And so I wanted to put that in there because so often things aren't communicated effectively, and so I wanted to put that to rest so that they know, like, listen, you have options. And I wanted patients to know, like, you have to ask the question, Doc, what is my options with this condition? Do I have access to clinical trials? Do I have access? What are my options? I also put in there, and a lot of people don't like to talk about this because this was brought up a lot every time I went to an appointment. Hey, do you have an advanced directive? Do you have a power of attorney? Do you have these tools in place? Do you have a will? And I was in the process of getting things together, but you know, I put it out because I was like, okay, I got time. I'm young. You know, I'm young. But you never prepare for a chronic illness. And so what I did, I put a I put that as a template in the back of the book so that people can have that so that they can, you got to take care of your business. Who is the person that's gonna make the best decision when it comes to your health care if you're not in a position to make this decision? And so that plus some is what's in the book. And it's really it's a great read. I mean, we talk about like foods you should stay away from when you're going through a flare, put herbs and spices in there. I know sometimes we want to, as you know, IBD survivors, we want to eat what we want to eat. And sometimes are you gonna eat that and suffer the consequences, or you just it's okay. I'm I'm good. You know, I I love gourmet food at one point in my life. And I was like Robin with the fancy glass. I love my red wine, but at some point you gotta say no. If if it's gonna cause me to be man down for the next week or two, uh-uh, uh-uh. I'll pass. I'll keep drinking my water with hydration tablets. So yeah.

SPEAKER_01: 27:30

That's cool. It sounds really informative. And I and I love that you touched on some of that stuff that is a lot of people don't, you know, like talking about advanced directives, talking about, you know, kind of healthcare legal healthcare choices. Because I think, I mean, a lot of people don't even understand what they are. Like, what is an advanced directive? Like, what exactly does that do? What's a medical power of attorney? How does that work? You know, so I think it's really important to share that information with folks just because there's it's just like nobody knows about it. And then all of a sudden you were faced with needing it and then it's not there, and you know, you don't want it so that your wishes are not honored, right? No matter what it is. So I think it's super important. I'm curious, what's been the response to your book so far? How long has it been out and what feedback are you getting from people?

SPEAKER_00: 28:08

So my book came out, it was launched on my birthday, March 16th of this year. I mean, I've gotten so many people who ordered the book. Our goal is really to take this book. We want doctors when they diagnose their patients with this condition, that they give them this guy. Because it's one thing to diagnose someone with something and you give them a pamphlet. Okay, that's great. But if you give them the like a blueprint, it's like a journal, if you will. They can they'll hold on to that and they will learn about this condition. Yes, our are medications changing, yes. But those are I know that they need to know the basics of what is inflammatory bowel disease? What does that mean? What is Crohn's disease? What is oserative colitis? What does it mean when your ESR is elevated or you're anemic? You're gonna hear biomarkers, and so that's no more than labs. What does your lab say about you? You know, and so we really have to get patients educated on how to advocate for themselves without overwhelming them. And so that's what this book is gonna do is just give it to them in simple terms. So when they go to the doctor, hey, hey, doc, my lab says this, because what I was doing is not even looking at my lab lab results. And so I was like, one day the light bulb went off, and I said, Let me look at these numbers because something just isn't right. Like, I'm not gonna allow these doctors to keep telling me something without being informed. So you can't make a decision if you don't understand what the numbers are saying on your lab report, you know, because they may offer you something, they may want you to get iron infusions, but your iron may be off just one half of a point, meaning that you don't need to go and get this infusion. It could be just maybe you just were. Off that day, you know. So that's one of the reasons why. One of the chapters is do you know your numbers? Because so many people.

SPEAKER_02: 30:08

I obsessively look at my labs and I personally use it as a way to know if I'm going downhill. And I say that with the recognition that I've said on the show many times that my body is a liar. And so sometimes everything looks good until all of a sudden it doesn't. But sometimes, especially with my iron, I am anemic. I can see, like, hey, doc, my iron has been gradually going down every time. Let's take a look at it. Even though it's still in the clear, it has been decreasing. So I've used that a couple of times, especially if I start to get symptomatic. Like anemia has symptoms. And so I start to get symptomatic. So I love that you are teaching people to look at their labs, know what their numbers are. Look at your labs when you're feeling great. So you know what they should be for you when you're feeling great. And then that way you know, even if it's still in normal range, if it's not normal for you, you could still be experiencing some kind of symptoms. So know your numbers.

SPEAKER_00: 31:07

And you know, and then to add to that, so one of my numbers, I'm just gonna say this for those that are listening, my GFR, which is my kidney function, has been off. Sometimes it's high, sometimes it gets, you know, I question it. So what I did, I'm like, listen, you're not going to wait a year to tell me we have a problem. So what I did, I looked at my numbers, and I even went back like a year ago and said, Hey, okay, it was this number. So what do I need to do? And so it was more of a conversation. I went to a kidney doctor. Hey, listen, this number is this. I need to get this up. And he was like, Listen, you just dehydrated. You drink more water, but you need a little help. You don't need to just drink plain water, you need to hydrate yourself. And so that's one of the things, like just like you said, I wasn't symptomatic, but I could tell that something's going on, and I need to get, and usually you could tell, like in your like your urine or something, you could tell like something's off, but yeah.

SPEAKER_01: 32:06

I really like that you're like explaining symptoms to people too, because I think a lot of people just assume inflammatory bowel disease pooping, right? Diarrhea. And there are so many other symptoms that could be out there, like brain fog and some of these other things. And so it's hard to tell the doctor what your symptoms are when you don't know if it's a symptom of your inflammatory bowel disease. So I think it's really cool that you're giving people a place to like, here's what you could be experiencing. Make sure you're going and talking to your doctor about it, because that might mean that things are treated differently. And so I think that's that's a really important thing. It's the other thing I really like is that, you know, it's really overwhelming to get diagnosed with anything. And then, you know, you get this label dropped on you, and then you kind of go, holy cow, and then you go do a bunch of research, and then you're completely overwhelmed. So it's nice to say that you're breaking it down into like this week you're only going to focus on this thing. That's all you're gonna look at. You're gonna listen to the song, you're gonna do this affirmation, you're gonna think about this thing, and then you walk away, you know, and then you the next week you do something else. And so I think it's helping people digest it and not get completely overwhelmed and just kind of throw their book away and then say, I'll deal with that later, and then until they get sick, and then they end up having to kind of go back to it. So I think I really like that. I think that's a really smart move.

SPEAKER_02: 33:11

Yes.

SPEAKER_01: 33:12

I'd love to talk about clinical trials, and this is so fun. We love Robin and I are big geeks, basically is how it goes. In addition to do the patient navigation and having this really grass, this really great resource in this book and doing support. You also have educational sessions that you do for patients and really to again do actual training with patients either directly in a room or sort of virtually to provide these types of you know, talks and resources and educational opportunities. Like you said, there's there's history behind you know, some mistrust, founded mistrust of the medical community. What do people say about clinical trials? Like when in the black and brown community, when like when you're talking about this, what are the questions they have? What are maybe some barriers that sort of keep them from maybe investigating this or really feeling comfortable participating in a clinical trial?

SPEAKER_00: 33:56

So, one of the questions that we get when we get patients that come through our patient navigator program, they don't know that that's an option for them. Clinical trials is an option one, right? They don't have access to a clinical trial or their provider has not given them that as an option to participate in clinical trial. So, for example, for me, because I was failing so many medications, that came up in a conversation with my GI doctor. Hey, you know, we need to look into getting you, see if you could possibly get into a clinical trial. Okay, but is that an option for me? Or we're just having a conversation about it, right? That's a difference. It's a difference than having a conversation and then knowing if I do if I qualify too, is we've had people that went through a clinical trial, they've hyped them up for the clinical trial, they've gone through get to the door, and now they don't qualify, right? So that's a that's an issue too. So we have knowing that it's accessible to us, two not being qualified for the clinical trial, and three, just really understanding what a clinical trial. I think they need to change the term, it needs to be clinical research because that's really what it is. And the questions we get is if I go through this clinical trial, what happens at the end of the trial? Do they just like kick me to the curb or am I do I have a follow-up? And that is issues that we need to address. And so what we've done is we're partnering with Moffat Cancer Center to talk about the correlation with IBD and colorectal cancer, if it's not managed, how that could be an issue, because so many younger adults are now being diagnosed with colorectal cancer in the black community, and it's like rampant, and the numbers are just the numbers that they're diagnosing is not even hitting the mark, like it's higher than that. And so our goal is really to even with our educational series, our lunch and learns, our goal is really to educate patients on that too. Like, what do you really know what a clinical trial is? Do you know how that affects your health? Because let's talk about it. We know that the medication is based upon a white European male when you they look at these medications. So black and brown people aren't showing up for the trial, they're not there, and so that's why you have so many black and brown patients that are failing because they're not showing up. So our DNA is totally different than a white European male. And so what works for him may not work for Stephanie Wynn, may not work for Robin or Alicia. But we need to get, we need to be clear that we can participate in these spaces and we're not pushed away, if you will, we're given the opportunity as the 40-year-old European male to partake in this clinical trial.

SPEAKER_02: 36:50

Do you talk about the different ways that you can participate? Because sometimes it's just making your labs and like tissue collection available without actually having to go to be monitored, you know, try a specific medication. Sometimes it's just going so far as to say, yes, you can use my labs, you can use my markers, you can take a tissue sample, and that can be used in clinical research. Because I feel like that's an easier entry point, maybe.

SPEAKER_00: 37:19

Exactly. Yes. I know that there are, I've been seeing on social media is coming down my timeline of UC Crohn's and IBD with high blood pressure in the in a trial that's going on now with one company. And like you're right. And that was one of my questions because we've partnered with a local cancer research hospital here in Tampa that provides that research. And so our goal is to do that. Like if it's just based on we get so many people in the black and brown community to, like you said, use their tissue, use their labs, that then it's not as like an inconvenience. Because when you talk about the clinic going through the clinical research, okay, do they even have transportation to participate? You know, because there is going to be a requirement from the patient to show up, and you know, maybe it's every week, and maybe it's every two days, maybe it's every other day. And can they meet that need and come back? Do they have a car? They may not even have a car. You know, we had a patient that he was diagnosed with Crohn's disease. He was referred to our IBD patient navigator program. He was unhoused, but they prescribed him a medication that required refrigeration. But had the provider asked questions on the intake, they would have known that he didn't have this. This goes back to the social determinants of health. He would have known that, hey, we can refrigerate it here, you can come here and make it much easier for the patient. So again, our goal is really, like you said, to make it seamless for the patient to show up. That was a good question, Robin. And like we definitely want to wanna see if that's an option too to offer them.

SPEAKER_01: 38:58

There's so many reasons why somebody may not be like, you know, what clinical trials may not come up in conversation. It might be that there's just sort of assumption that you're not interested. It might be that they want to try the existing therapies first. There's just a lot of factors. It's hard to kind of say, like, okay, well, this is exactly what we can do to fix this. But I love that you're covering that and I love it that you're talking about it as a way to just get people familiar and get them to start asking the questions of their provider to say, what is available to me? What exactly? Because there are some distinct benefits to participating in a clinical trial, like being able to get free colonoscopies, being able to get free drug, but the trade-off is that then you actually have to go get more colonoscopies, right? And you have more monitoring that you have to do. So there's like kind of some trade-offs, but there it could be a great option for somebody who's maybe in between insurance or is you know that kind of thing. So it's just such an important piece. Plus, also, we're just getting to the point where no other medications are going to be available if we aren't doing these things. And so it's just a catch-22 that we're in.

SPEAKER_00: 39:54

Yes, ma'am.

SPEAKER_02: 39:54

Yes. I mean, we already only have I can't remember who we talked to. It was either one of the Davids that we talked to was like 60% efficacy right now. And if you fail on that drug, then it goes down significantly in percentage. And so if the medications aren't working for you, the likelihood that the next medication is gonna work is the percentages are significantly reduced.

SPEAKER_00: 40:14

So, what did my doctor? So he said, so the first medication, so if we were talking biologics, the first biologic, what did he say? You're gonna get the best bang for your book on that first one, the second, you know, and after that, you know, is you you hope and pray that it works out for the best, right? And so, who has the capacity to do that? We need help now, right? So, yeah.

SPEAKER_02: 40:35

I mean, you mentioned that you wrote three books. What were the other two books about?

SPEAKER_00: 40:41

My very first book was a business self-help book. It's called Ready Set Go: A Simple Guide to Establishing a Successful Small Business. And then I co-authored that with one of my coworkers at the time. And then my second book was I've published my book now. What? A simple guide to establish a successful author brand. Because what I do know is this if nobody knows that your book exists, nobody's gonna buy what you're selling. And oftentimes, authors they go through the editing process, the publishing process. But after the book is published, what do you do next? And they've sold to their friends and family, and then it's like their book just dies. And you should be building that author brand before your book is published so people know there's something to come. And it's not just about the individual book sale, but why are you writing this book? Are you really writing a book to make a difference in the lives of the people, or are you just doing it for notoriety purposes? And so the second book was really, these are just simple guys. My goal is to not overwhelm the reader, just to give it to them simple and plain. Then the third one came out, and now you know I already knew how to. My first book, I went through a publisher and they didn't teach about branding and marketing. But because I've had businesses in the past, I knew that you need to market your book, you need to get out there. So in the first book, I went on a nationwide book tour. I went from the East Coast to Midwest to the West Coast. But then, so this my third book is really more of a teaching tool, if you will, to go and teach to the mass of people so that they can get the help that they need and get the support. So even if patients who are diagnosed with IBD, they get a pamphlet from their doctor or some papers. When you leave that doctor's office, it doesn't matter, you can give them a stack of papers. They're still trying to understand like what does this doctor just say to me when they get home?

SPEAKER_02: 42:36

Even now, 25 years in, sometimes I'm like, What? I'm gonna need you to repeat that. Like, I don't know. Or and sometimes I walk out of the office and I'm like, I'll just Google this when I get home. And then they hate to see me coming back in the patient portal with my questions. Yeah.

SPEAKER_00: 42:52

And so what I tell patients is listen, get your three questions ready first. Like when you go in, three questions, make a list of 10, but those three questions, that's it because you don't have much time and you want to make sure that when you leave, it's a good visit and you've gotten your questions answered.

SPEAKER_02: 43:13

Can I add something to that too?

SPEAKER_00: 43:15

Sure.

SPEAKER_02: 43:16

Maybe even ask if you can record the answers because sometimes you have your priority questions that you want to ask, and maybe the answer to the first question you overwhelms you. Right. And then that's it. You're not remembering. And I had to learn this the hard way. I have not recorded, I haven't had to yet, but when I was really sick, like I had my daughter brought her to a couple of appointments with me so that I had another person there who could be my brain and my memory. And also have had my husband do that for me too when I was really, really sick after the surgery that I had in 2020. But we don't always have somebody that can go to the doctor with us. So I mean, I know not everybody does, but almost all of us have a cell phone. And so I would highly recommend that you record what the doctor says so that you can take it back and listen to it when you have a clearer head.

SPEAKER_00: 44:07

That is great. That's great information.

SPEAKER_01: 44:09

I'm curious, Stephanie, you know, hearing about your books about, you know, small businesses and building your business and things like that. What did you take from your other career into building this nonprofit?

SPEAKER_00: 44:18

One of the things that helped me, I'm gonna tell you this. This is so funny. So I was gonna market my second book. So I went to this marketing conference in Atlanta and I met these two ladies from Philadelphia. And we were talking, and she was like, What's your name? I said, Well, my name is Stephanie. I'm like, you know, we were talking, I said, I really want to start my nonprofit organization. And she said, Okay, so we had a lunch break. Well, when we came back, she was like, Excuse me, ma'am, I looked you up. You have another book. Why are you here? And I'm like, Because I want to learn how to market my book. And navigating IBD wasn't even, it was written, but it wasn't finalized. I said, I want to start a nonprofit, but I just been teetering. I didn't know, like, it's a lot of work, right? And so one night during this conference, I'll never forget, like, I woke up in the middle of the night and my heart was racing. And it was like, I was helping these people, but they couldn't hear me. And I was telling them, you gotta do this. Like I was telling them what to do. And I woke up like my heart was pounding. So I the next day I went and I spoke with the lady. She was like, Yeah, because you know, I have experience with funding a nonprofit. I'm like, what? She was like, Stephanie, you should do that. I'm looking at her like, this lady is crazy, right? She was like, I'm serious. What you're talking about? Nobody's doing that. Like, I mean, they're doing it, but not in our community like this. Like, you're really, you have something really good to talk about. So she was like, Look, I tell you what, I'm gonna send you some information and I need you to look at it. So I was like, okay, and we have become the best of friends. And it was there, like the the website was already up. I had already did some things, Alicia, to like behind the scenes, but I didn't let nobody know because I was like, I had to get out of my way because I'm like, who's going to listen to me talk about inflammatory bowel disease? Nobody's gonna want to hear about that. And my mom was like, That's not true. If you start, I promise you, people will listen. I started doing blogs, posting them on LinkedIn. I was like, you know what? Let me get active on LinkedIn. And so the lady from Philadelphia was like, Look, you need to know what social determinants of health is. Here, you need to get this information, and I was like, huh? I'm like, oh, okay. So I gotta go back and get some training. And I love learning. I'm all I love to learn, I love to learn new things, but not just learn new things, but truly apply those to the community to help the community out. And so that's how the nonprofit started. But I would say yes, because I started businesses before, my very first business was an ice cream shop here in South St. Pete. And I just always had that entrepreneurship spirit in me to help others. And one thing I do know is even though it's a nonprofit, you still have to run it as a for-profit, meaning you have to market it, you have to brand it, people need to know that it's there. It's been a journey to say the least. And I'm just so thankful that I'm we're able to, like our board is able to just help get the word out about what we're doing because the people need you to show up for them. And so, yeah, that's how the nonprofit became uh to be.

SPEAKER_01: 47:29

That's awesome. You're in the right place at the right time. Very fortuitous.

SPEAKER_02: 47:32

Stephanie, thank you so much for coming on the show, for being our guest and for reaching out through the website. So glad that you did. Thank you so much. And uh have to ask you the last question, which is what is the one thing you want the IBD community to know?

SPEAKER_00: 47:46

Absolutely. So, the one thing that I would like the IBD community to know is that you're not alone. You are not alone in this journey. Your voice matters. IBD does not have to define who you are. Saying that with so much compassion and just to know that you're not alone, even when you're in your darkest moments or you're having the worst flare up, you are not alone. You just have to breathe through it. You're gonna get through it. Things are going to get better with the right tool support and the right team. You can definitely get through this and you can have a good quality of life if you focus on what really matters, and that is your health, because your health is truly your wealth.

SPEAKER_01: 48:26

That's fantastic. I love that so much. Stephanie, what an absolute pleasure to talk to you and to learn more about your book and more about your organization and all of the many, many things that you do. Thank you for coming on the show. And again, thank you for reaching out to us. And thanks everyone for else for listening as well. And cheers, guys.

SPEAKER_00: 48:44

Cheers. Hi, this is Stephanie Wynn. I'm your IBE patient navigator. And if you enjoyed this episode, please rate, review, and subscribe and share with a friend. Until next time, peace.