Gut Culture
A podcast that gut checks assumptions about IBD (Inflammatory Bowel Disease) through real conversations with two healthcare leaders.
The Global Healthy Living Foundation (GHLF) with over 2 decades of experience advocating for chronic disease patients joins forces and voices with the Color of Crohn’s and Chronic Illness (COCCI), a nonprofit organization founded by Health Advocate and Crohn’s Patient Melodie Narain-Blackwell.
COCCI’s mission is to improve the quality of life for BIPOC who are affected by IBD, Digestive Disorders and associated Chronic Illnesses; through Community, Research, Education, and Advocacy.
Episodes
Episode 4: The Power of IBD Advocates
Two mothers with inflammatory bowel disease have much in common. But what makes them different is what also makes them so powerful as the “IBD Moms.” In the second of a two-part episode, Brooke Abbott and Amber Tresca talk about how racial disparities impact access to IBD diagnoses and treatment, and why building community is crucial to getting much-needed information into the hands of people living with IBD.
“We can help one another in this,” says Amber. “Let’s figure out what we need to do to make sure that we’re the best moms that we can be. We just found so much joy and so much friendship in one another.”
S1, Ep 4- The Power of IBD Advocates
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Amber Tresca 00:11
From the bottom of my heart, so sorry that you’re living with IBD, or that your child is living with IBD. But look, we have each other now. And we can help one another in this and we might not have known each other, otherwise. Let’s get together. Let’s figure out what we need to do to make sure that we’re the best moms that we can be. That we can put aside things like guilt, and be there for our children and raise the best darn kids that we possibly can.
Melodie Narain-Blackwell 00:40
Hey, hey, and welcome back to another episode of Gut Culture, a podcast that gut checks assumptions about IBD. I’m Melodie Narain-Blackwell, Health Advocate and Founder of COCCI, which stands for Color of Crohn’s and Chronic Illness.
Steven Newmark 00:54
And I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation. Hi Melodie, I’m excited to join you once again for this important podcast. In fact, today is part two of our special episode, the IBDMoms.
Melodie Narain-Blackwell 01:06
Steve, you know how much I really enjoy doing this. And I’m excited that not only did we have a double dose of IBD trouble once, we’re getting a double dose a double time. My connection to this podcast is beyond just being an advocate, but I’m a Crohn’s patient who actually lives through this IBD journey every single day.
Steven Newmark 01:23
Me too, Melodie. I’ve lived the IBD journey, and I’m excited to share our stories as we build our community.
Melodie Narain-Blackwell 01:29
As you know, Gut Culture focuses on building that community for people of color and their journeys, which unfortunately, is different from others. We’ll spend some time talking to doctors, health advocates, mental health professionals, and others about what IBD is, about why it may be hard to get a proper diagnosis, especially for people of color, and what you, that mean you Steve, and others can do to improve the life of those who are living with IBD.
Steven Newmark 01:55
Everybody deserves that. Hopefully this podcast can help improve the lives of folks living with IBD. So let’s get started. Welcome back, Amber Tresca and Brooke Abbott from IBDMoms. Thank you for coming back.
Amber Tresca 02:10
Hey, happy to be here.
Brooke Abbott 02:12
Thank you for having us.
Melodie Narain-Blackwell 02:14
Welcome back, ladies. You both mentioned earlier that your journeys were different. While there was similar outcomes with having a J-pouch and children and being IBDers, there were some things that may not have been executed the same. We’d love to hear about it.
Brooke Abbott 02:31
Absolutely. There is a clear difference between Amber and myself when you see us. I am Black, she is not. And even though our stories are similar, I experienced a lot of health inequities, just based on stereotypes that exist for Black women. Also having the barrier pre-ACA, which is the Affordable Care Act, a law that allowed patients who have a pre-existing condition to actually have insurance and I was a victim of that. I got thrown off with my health insurance because I didn’t disclose a disease that I actually didn’t know that I had. Between the time that I started having symptoms and the time I was diagnosed, I was told that I had everything except for inflammatory bowel disease. In fact, nobody even checked for inflammatory bowel disease. I was told I had lupus, I was told I had a poor diet, I was told I had the Freshman 15, even though I was losing weight. He said in my case, my Freshman 15 was that I was losing weight instead of gaining weight. And stress. They kept saying, “Stress, this is what happens to everyone. Everyone feels this way.” I was completely dismissed until it got so bad that I passed out at work. And finally my mom kind of intervene like, “What is going on with you?” And I explained to her how long I had been feeling that way. And then I was able to find a doctor who was of color. He asked me three questions, diagnosed me right away. And then post-diagnosis, I continued to have these crazy situations. I had one gastroenterologist, when I was pregnant, tell me that I had hemorrhoids. I think it was only 13 weeks being pregnant. I had one gastroenterologist tell my partner I was suffering from postpartum depression a year later and that if he just gave me more affection and paid attention to me more than I would stop creating the symptoms for myself, that a lot of my issues were psychosomatic. He just really just didn’t think that I was being truthful. Even though I was getting my colonoscopies. I had done my stool samples. I was getting my blood tests, it was clear that something was wrong, but apparently I was doing it to myself. And those are inequities and stereotypes that follow and plague a lot of patients of color, specifically very heavily women. Women are already viewed as patients who are dramatic or can’t take pain and for some reason there’s a stereotype that Black women can endure heavy amounts of pain, more so than other patients. Quite often, I was told that I was drug seeking. I wasn’t given the proper amount of pain medication to help me with my pain management. And it’s so funny because I thought that this was something that had happened with everyone with pain management, until I went to a doctor’s appointment with my grandmother, who is older, middle class lady, she presents white, she’s about the same color as Amber. If you ever see Amber, you see my grandma. And we’re sitting in a room and the doctor was asking her about her pain level. And I was getting myself prepared for having to help her manage her pain, because I knew that they just weren’t going to give her enough pain medication to last her through this period. And she tells him her pain level, and he like throws the pills at her. I was like, “What is this? You get your pain managed? Does this happen at every doctor’s appointment?” And she was like, “Yeah, what happens that yours?” And I was like, “Not this honey. This ain’t me.” And it’s funny because Amber and I have our own lanes and our own experiences and we have moms who speak to our each of our experiences. And I’m so glad that we are the two people that are working on this project together, because we have moms who are represented in each of us.
Melodie Narain-Blackwell 06:23
Incredible. I can see and feel so much of my own life and journey in your story that you just shared. So I want to say thank you just for sharing that. But also staying committed to your health. Once you have experienced something like that and experienced these journeys that make you feel disqualified, you’re not heard, you’re not seen, you’re not represented, you just shut down. I’ve seen so many community members just say, “I stopped going to the doctor, I stopped going to the hospital because of its, XYZ.” So thank you for continuing. In the spirit of fight the power, I want to know how this brought both you and Amber to advocacy. I’d love to know, Amber, like you having this friendship with Brooke, how did that make you feel? And when did you say it’s time for me to do this, or put my foot down?
Amber Tresca 07:10
When I met someone who had similar concerns as mine, as a mother living with IBD. I immediately thought to myself, well, there are other people out there who are also going through this journey by themselves as we were, because you’re not meeting other folks out in your community that live with IBD just on a regular basis. You would have to do so through your physician or through a hospital or through one of the patient advocacy groups. We started kind of small, we just decided let’s see how this goes. We started doing some Twitter chats just to see what the concerns are for mothers who live with IBD because my needs are different than Brook’s needs are different than Melodie’s needs, right? We can’t ever speak for the entire community, so we’re always making sure that we’re finding out what folks need as we proceed forward. And we’ve learned a lot. And what’s funny about Brooke and I both is that I think we’re both like planners. And I think that also comes from living with IBD for a long time, because you can’t just pick up and like leave the house, right? There’s so much to consider. And when you live with a J-pouch, there’s things to consider like hydration. When did I eat? Did I eat enough? Did I eat too much? Is there going to be a bathroom? I think almost everybody with IBD, if they’re not in remission can relate to that. The things that we’re thinking about all of the time have just sort of naturally lent themselves to our personalities becoming more like planners. And that’s something that I like to talk to IBD moms about is that what’s in your diaper bag. That’s the thing that we talk about. And no matter what your diaper bag looks like, and I’ve definitely went out of my way to buy a diaper bag that didn’t look like one. But what’s in there? What do you need to take with you to make sure that you can get through your day and get through everything that you want to do with your children and do it comfortably? For someone like Brooke and I who live with a J-pouch, that could literally be some barrier cream to help us out during the day. It’s usually like water, some special hydration, because we live without a colon. For other moms that might be their medications. It’s all about planning ahead. It’s all about thinking where you’re going to be, when you’re going to be there, how are you going to structure your day. And something that I say a lot as I say to other people that from the bottom of my heart, so sorry that you’re living with IBD or that your child is living with IBD. But look, we have each other now. And we can help one another in this and we might not have known each other otherwise. Let’s get together. Let’s figure out what we need to do to make sure that we’re the best moms that we can be. That we can put aside things like guilt and be there for our children and raise the best darn kids that we possibly can.
Steven Newmark 09:56
At GHLD and at COCCI, we’re big believers that creating the community then helps with advocacy. I wonder if you could talk to that, we’ll turn to Brooke first, if you could talk to how building that community then in turn helps advocate on behalf of other patients.
Brooke Abbott 10:09
The pandemic has shown us that we are creatures who need a community, who need people, who need support. And when you have that support, when you have that strength to move forward, it kind of gives you that power to advocate for other people. But it also gives you stories and it gives you information, it gives you a path on how to advocate or where to advocate. It wasn’t until I really met other IBD patients, specifically other moms and pediatric patients, that I realized that there was a need for more advocacy in the legislative space. Now had I not met those people, had I not heard their stories, had I not spent time with them, I wouldn’t have known that there was this gap that was needed, that these voices needed to be heard on Capitol Hill or from at the state capitol, there was a need. And I also think that having not met Amber, I wouldn’t have known that I really needed somebody else. I really could have used a lot of the things that we talked about now, as a young mother, living with this chronic condition. You often need the stories, you need the support and the motivation. And you need to find the lane. And we have found multiple lanes that nobody’s been working on.
Melodie Narain-Blackwell 11:33
Brooke, you just touched on the isolation of the disease. How like, you don’t know that you need the community, you don’t know that you need the support or the advocates. Nine times out of ten patients are just trying to be patients. They don’t even know there’s validity in what they’ve just experienced. They’re just trying to get to a place of sustainability. We’re just trying to like clear out the way. Can you just clear that way? When you connect with people like you and Amber and Steve to say wait, policy is for the people. Because we don’t think about policy being for people, we’re just trying to get to that next space. Oftentimes, especially when you don’t have a community, it stops with what’s right in front of you. But to hear your stories and to know of the community members that I serve with COCCI and the community members that GHLF serves, their stories are the stories that we need to move policy and for legislators to understand that this person presented these symptoms, why are you giving them pills to even start with? Or this person has been able to get into remission in this particular disease space with on this med, but now you’re switching them to something else because the payers don’t want to pay for this anymore. These stories bring light to those real life lived inequities for all of us.
Steven Newmark 12:44
Very well said.
Melodie Narain-Blackwell 12:45
I find often with COCCI, our community members, is that they didn’t know that there was a space to turn to that could give them support. And usually the first challenge is just getting diagnosed. As you all have been able to amplify your voices and really bring together a community of mothers, parents, and and dads, because under IBDMoms, I really feel like there’s just a holistic family approach there too. What is the most challenging aspect you all have been presented with from the community?
Amber Tresca 13:15
I think it is letting people know that we’re here. That there’s a group focused on IBD and motherhood. Whenever I go to events to speak, I always introduce myself as part of IBDMoms and I usually have cards to hand out or sometimes I have some freebies depending on what we have here. But it’s always so gratifying to meet an IBD patient or the mom of an IBD patient who is super excited to know that we have a closed Facebook group that is for our IBD moms. They ask questions and get answers. That has been one of the most fulfilling things along this journey is that we created this group, and people will come in and ask a question. And then they’ll answer each other’s questions. The community is so giving. Once we find them, or they find us, it’s fantastic. The problem is finding each other. I’m continually amazed at the people who live with IBD who’ve been diagnosed who’ve been through that whole process, who are not aware that there are patient advocacy groups that can help them on their journey. Another thing that all of us here on this episode are working towards is also working with the providers to make sure that the providers know that we’re here. If they have every person that walks through the door and gets diagnosed with IBD, they let them know of the groups that are available to them and the help that is available to them, the support. We could reach so many more patients that way. That has been, I think, one of the biggest hurdles is just been finding people and then letting them know how that they could find us.
Steven Newmark 15:04
Brooke, we just heard from Amber about her challenges, can you tell us what specifically could have helped you in your journey?
Brooke Abbott 15:11
It’s really just access. And I think a large part of that is getting to patients through the providers. I remember being diagnosed and then having my surgery. And after my surgery, the nurse handed me this very large, thick packet of Xerox copies of wires. And she was like, “Yeah, this will help you.” Had she given me some handles of some of the patients on social media, or the Facebook groups or some of the foundations that were already established, that would have been so amazing. So it’s really just letting people know that we’re out here. And also normalizing IBD I think it’s just another huge challenge. Just making sure that people feel completely comfortable to talk about having IBD. We do have moms in the closed Facebook group who families or coworkers don’t know that they have it. And it’s because of that, like we were talking about in episode one, that doubt. “She looks fine today. Why was she complaining about this yesterday?” But I think our biggest challenge is going to be overall normalizing IBD.
Steven Newmark 16:27
It’s been great talking to the IBDMoms, I thank you again for allowing an IBD Dad to join in the discussion.
Brooke Abbott 16:32
Thanks so much for having us.
Amber Tresca 16:34
Thank you so much. It was such a pleasure to do this with you. I hope we get to do it again.
Steven Newmark 16:40
Thank you, Amber and Brooke. Thank you to our listeners for listening to Gut Culture, the podcast that gut checks assumptions about IBD. If you liked this episode, give us a rating and review on Apple Podcasts. And hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Steven Newmark.
Melodie Narain-Blackwell 16:57
And I’m Melodie Narain-Blackwell. We’ll see you again next time.
Narrator 17:02
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Episode 3: Two Mothers Form a Bond Through IBD
A podcast that gut checks assumptions about IBD (Inflammatory Bowel Disease) through real conversations with two healthcare leaders. Hosted by Steven Newmark- Director of Policy at Global Healthy Living Foundation and Melodie Narain-Blackwell, President and Founder of The Color of Crohn’s and Chronic Illness.
S1, Ep 3- Two Mothers Form a Bond Through IBD
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Amber Tresca 00:11
As mothers, surrounded by moms who weren’t like us, but we don’t look different. We don’t carry around signs that say that we’re living with IBD and fatigue and all these other things and we don’t have a colon. We just found so much joy and so much friendship in one another. And then of course, because we’re both ridiculous type A personalities, we create things. That’s where we started putting together IBDMoms.
Melodie Narain-Blackwell 00:43
Hey, Hey, and welcome back to another episode of Gut Culture, a podcast that gut checks assumptions about IBD. I’m Melodie Narain-Blackwell, Health Advocate and Founder of COCCI, which stands for Color of Crohn’s and Chronic Illness.
Steven Newmark 00:55
And I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation. Hi, Melodie. I’m excited to join you once again for this important podcast.
Melodie Narain-Blackwell 01:03
Hey, Steve, I’m happy to be here. As you know, I really enjoyed doing this with you. My connection to this podcast, of course, is way beyond just advocacy and storytelling. But I’m also a Crohn’s patient. And I live through this journey every single day.
Steven Newmark 01:16
Me too, Melodie. I’ve lived the IBD patient journey, and I’m excited to share our stories as well as stories of our guests as we build our community.
Melodie Narain-Blackwell 01:25
And that’s exactly why we’re here. Gut Culture focuses on building that community for people of color and their journeys, which unfortunately, we know may be different from other folks. We’ll spend some time talking to doctors, health advocates, mental health professionals, and others about what IBD is, why it may be hard to get proper diagnosis, especially for people of color, and what you, that’s you and me, Steve, and others can do to improve the life of those who live with IBD.
Steven Newmark 01:53
And hopefully, this podcast can help improve the lives of folks living with IBD. Let’s get started. We have a two parter with two great guests, Brooke Abbott and Amber Tresca of IBDMoms. And in part one, we’ll learn a little bit about their stories with IBD. And in part two, we’ll start to talk about how we can improve lives with IBD. Amber, why don’t you start by introducing yourself and telling us about you and your IBD story.
Amber Tresca 02:16
My name is Amber Tresca. I’m the Founder of About IBD, and the Co-Founder of IBDMoms with Brooke Abbott, who’s also here today. I was diagnosed when I was 16. I lived in Michigan then. I was diagnosed first with ulcerative colitis, which I then had for about 10 years until I became completely unresponsive to the only two medications that we had available at that time and my colon was falling apart and I had two step J-pouch surgery. After I had those surgeries. I was fortunate enough to become pregnant and carry to term twice. That’s what makes me an IBD mom is I have a 12 year old and a 14 year old. And along my journey I’ve learned so many things. In addition to being an IBD mom and being a patient, I am also an educator. I’m a writer and editor. I write a lot of patient facing content for the IBD community. I also run my own show about IBD which I’ve been doing for a few years now and has been just incredibly rewarding. I’m Amber Tresca, and this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease.
Steven Newmark 03:22
And Brooke, we’d love to hear your story as well.
Brooke Abbott 03:24
So my name is Brooke Abbott. I am one half of IBDMoms and I’m one whole of Crazy Creole Mommy Chronicles. I was first diagnosed in 2008, but I had been having symptoms since 2001, which was my freshman year of college. In fact, they were so bad. I didn’t know what was going on. But I knew something wasn’t right. So I dropped out of school, I started work and then a year after I was diagnosed, I welcomed the most beautiful child I had ever laid eyes on in 2009. And 2012 I ended up having my colon removed just because of years of mistreatment or no treatment at all, not enough care, only ER care. I really struggled. Once I had that surgery and things started to change for me, I decided to start advocating in the space of inflammatory bowel disease and health equity. I started talking about motherhood and I met people like Amber and some of the other IBD advocates online and started using my passion for policy and legislation as a vehicle to help the IBD community. I started advocating in the legislative space and then in 2018 we started IBDMoms. And in addition to being an advocate, I’m also a student. I’m back in school trying to transfer into the university of life, and I have a kid who just entered middle school so that’s a whole nother situation there.
Melodie Narain-Blackwell 04:56
So Amber, tell me how you and Brooke got together. What was the whole inspiration behind creating this mega awesome organization IBDMoms.
Amber Tresca 05:06
We met at at Healthy Voices Patient Conference. Brooke may have to remind me of the year because time is a flat circle and I don’t remember. It was one of those just complete watershed moments, lightning strike, things that happen in your life. I remember sitting in a hotel bar until we had to go to bed because we were supposed to be doing things in the morning. But we both realized that going through your journey, especially for me being diagnosed 30 years ago, you don’t just meet people in the wild who are like, “Yeah, I have IBD as well.” And you definitely never meet another person that has had the kinds of specialized surgeries that we’ve had, those with a J-pouch. That’s never happened. When you get folks like us together in a room, there’s just a special kind of magic that happens. And then us both having kids of similar age, we were talking about all of the different things that went into that, and how we were managing everything and how we were putting together our lives as mothers, surrounded by moms who weren’t like us, but we don’t look different. We don’t carry around signs that say that we’re living with IBD and fatigue, and all these other things, and we don’t have a colon. We just found so much joy and so much friendship in one another. And then of course, because we’re both ridiculous type A personalities, we create things. That’s where we started putting together IBDMoms.
Melodie Narain-Blackwell 06:42
I think it’s so unique because we were meant to be.
Brooke Abbott 06:46
When you’re an adult, and you meet people, it’s just so odd to meet people randomly that you can really have conversations with. As adults, it’s really hard to make adult friends in your mid 30s. We just started talking and then we became very, very close. And it’s so interesting that our journeys are so similar, but yet so different. Our kids are close in age, we both had J-pouches, we both had complications, but our diagnosis period was completely different. I had a child while having an active UC before my surgery. So I had a toddler during my surgical period and post-surgical period. And overall was a little different. And I think that that was something that was so beautiful about coming together to create IBDMoms is because we have similar perspectives, but we have two different experiences.
Steven Newmark 07:46
How does IBD impact your family life and other social relationships? Brooke, let’s start with you.
Brooke Abbott 07:50
It impacts my life significantly. Just because now I’m a single mother, everything is a time schedule crunch situation. For example, when it’s time for treatment, when I was taking an IV infusion form of a treatment, there was a lot of planning involved. The days that my kid was out of school, my kid had to go with me, I had to bring things to occupy my child. On the days that he was in school, I had to figure out how to get him to and from school, I needed a lot of help with that. On the days that I have colonoscopies, it takes a village. I need someone to drive me to the appointment and then I need someone to take Jax to school, pick Jax up, make sure that Jax has a snack. All the little things that I think I took for granted when I had someone in the home with me. Also, on those days when I don’t feel well, do I have backup? Do I have a friend who can step in and help with whatever I need. And with volunteering at the school and making sure that all my work gets in because I’m the only one making a paycheck in this household. And just making sure that everything’s on time. And I know that that’s very, a source of frustration for my surly 12 year old right now because everything is on there very slow, on my own time kind of situation. And that just doesn’t work for me. I come from production, like everything needed to happen three weeks ago. But for me a schedule, we have to stick to it. We have to have open forms of communication. I have to know what’s going on at school at all times because I have to be overly prepared because it takes a moment for me to find someone to back me up and help me out.
Steven Newmark 09:31
And Amber, how has it impacted your family life and social relationships?
Amber Tresca 09:35
Having IBD impacts everything. And as far as my motherhood journey, I’m gonna tell you a story that I don’t think I’ve ever told outside of talking to legislative staffers when we do our activism work on behalf of IBD patients. I was good after my J-pouch surgeries for quite some time. And then I started having symptoms again and had to go through that gauntlet again. Trying to figure out what it was, what was causing it. When you’re a woman, the first thing they do is send you to the gynecologist. Eh, no luck there. Back to my GI, start going through all the testing there. And this was at a point in time where I was running Cub Scouts and running Girl Scouts. And it got to the point during this diagnostic process, and then also the treatment process, because I ended up being subjected to step therapy, we had to wait a little while before I actually got on a decent treatment that would work for me, I had to send the worst emails I have ever had to send. And tell my fellow parents that were volunteering with me at school that I couldn’t do it anymore. I would get through my work day, I would get the kids home, I would get everyone dinner, and then I would be in bed with a heating pad. And that was pretty much how my life went. That was really difficult and seeing people’s reactions to me, who wants to do everything all of the time, suddenly saying no, I can’t do this now. That was a lot. You can’t control people’s reactions. But goodness, that was a lot. Because people did not know that I was living with something that impacted my life in such a profound way until it finally completely ground me to a halt. That is one way of describing how IBD has affected some of my relationship. But it certainly has pulled me away from family life and from the things that I want to do as a mother more than once, unfortunately.
Melodie Narain-Blackwell 11:39
We get up and fight and we put on this face. So people really don’t know how awful things are going for us. And then when we show up smiling and we go home, and we send the email that says I’m done. Amber, they were like, Well, you were just fine yesterday.
Amber Tresca 11:54
And I never really understood until I went through that process, how many folks don’t quite understand the up and down of it. Because it’s been almost my whole life living that way. It was kind of a shock. And yeah, being the person that’s like, “Oh, you need somebody to come to school and do whatever? Alright, I’m there. What time?” You know, and then suddenly being not that person like that was really hard.
Melodie Narain-Blackwell 12:17
I think only those who are actually living through it understand that it is heavily individualized. And you can have a A Day or a D Day within 30 seconds because it comes and we do our best to manage it. And we do our best to prepare. But it’s not a disease where we can just say, oh, sure. And we try to live life where we plan. But this might be the day that our medication actually fails, I am actually having to be committed to the toilet because I can’t move because now I’m dealing with a symptom that if I’m not sitting in this wonderful restful place to manage my mental health, and then I’m going to have to deal with another set of mental and emotional and physical problems.
Brooke Abbott 12:54
Your comment just reminded me when Jaxon was little and I had my ostomy. Some days, I would say let’s go to the park. And then we get to the park. And I’d be like, “Okay, we’re gonna have to cut a little short today.” And one day, he was so furious because we had gone to the park. And we could only stay for like 20 minutes. And after 20 minutes, I was just done. And so it was like, “Well, you know, we’ll come back tomorrow. Maybe we’ll come back later this afternoon.” And he turned on a heel at me with his hands on his hips. And he marches up to me and he literally doesn’t address me but he goes to my ostomy and he goes, “Hey, you bobo! You better be nice to my mommy so we can be in the park!”
Steven Newmark 13:39
That’s a great way to end part one, if I may say. It’s been great chatting today to talk about what you have each been through and the importance of other folks to lean on. And we look forward to bring you back for part two and talk a little bit more about maybe some advice for some of our listeners as well. And with that, we thank our listeners for joining us today here on Gut Culture, the podcast that gut checks assumptions about IBD. If you liked this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Steven Newmark.
Melodie Narain-Blackwell 14:11
And I’m Melodie Narain-Blackwell. We’ll see you again next time.
Narrator 14:16
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Episode 2: Are There Any Black People with IBD
If you’re part of an ethnic community, you know how difficult it is to get diagnosed and treated for inflammatory bowel disease, or IBD. In this episode we hear from gastroenterologist Dr. Florence Odufalu, and why she treats patients in ethnically diverse and underserved communities. We also talk with ulcerative colitis patient Joshua Benton, who has been managing his disease for more than 17 years.
“It’s an incredible challenge for all IBD patients to navigate the health care system. Especially in patients of color, I kind of hear sometimes the same thing that, ‘I didn’t really know where to turn. Nobody was really believing my symptoms,’” says Dr. Odufalu.
S1, E2: Are There Any Black People with IBD?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Florence Odufalu 00:12
It’s an incredible challenge for all IBD patients to navigate the healthcare system. Especially in patients of color, I kind of hear sometimes the same thing that, “I didn’t really know where to turn. Nobody was really believing my symptoms.”
Melodie Narain-Blackwell 00:31
Hey, hey, welcome back to another episode of Gut Culture, a podcast that gut checks assumptions about IBD. I’m Melodie Narain-Blackwell, Health Advocate and Founder of COCCI, which stands for Color of Crohn’s and Chronic Illness.
Steven Newmark 00:45
And I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation. Hi, Melodie. I’m excited to join you once again for this important podcast.
Melodie Narain-Blackwell 00:53
Steve, if I can be honest, I really love what we’re doing here. As you know, my connection to this podcast is way beyond being an advocate, but a Crohn’s patient, and I’ve lived and I’m living this IBD patient journey every single day.
Steven Newmark 01:07
Me too, Mel. I’ve lived the IBD patient journey, and I’m excited to share our stories as we build our community.
Melodie Narain-Blackwell 01:12
And Gut Culture focuses on building that community for people of color and their journeys, which unfortunately, we know may be different from other folks. We’ll spend some time talking to doctors, health advocates, mental health professionals, and others to talk about what IBD is, about why it may be hard to get a proper diagnosis, especially for people of color, and what you, that’s me and you, Steve and others, can do to improve the life and the lives of others living with IBD.
Steven Newmark 01:43
And everybody deserves that. And hopefully this podcast can help improve the lives of folks living with IBD. So let’s get started.
Melodie Narain-Blackwell 01:53
We have two special guests to hear from this time. Joshua Benton, an ulcerative colitis patient and Dr. Florence Odufalu, a gastroenterologist. Welcome Dr. Odufalu.
Dr. Florence Odufalu 02:03
Hi, thank you for having me.
Melodie Narain-Blackwell 02:06
I have learned and looked around when I was looking for a particular physician of color there were so many challenges when it came to locating gastroenterologists, especially an IBD specialist. Can you tell us how you got into IBD care?
Dr. Florence Odufalu 02:19
When I went into medicine, I knew that I was interested in treating in ethnically diverse and underserved communities. But when I first learned about IBD in medical school, I was taught that IBD was primarily a disease of Western Europeans. And it wasn’t until my GI fellowship training that I quickly learned that this was absolutely not the case. I had the opportunity to care for several severe and refractory IBD patients who are patients of color and due to the severe refractory disease course, I began to educate myself about how does IBD present and what is the IBD course in non-white populations. And when I looked through a lot of available research, I didn’t see that there was a focus in understanding the disease course in people of color. And so from that moment onward, I’ve been very interested in IBD and understanding more about the disease process and treating minority patients with IBD.
Steven Newmark 03:09
Dr. Odufalu, do you mind if we just take a step back and you could tell our audience what led you to medical school initially, where you practiced first after medical school, where you did your residency and so forth?
Dr. Florence Odufalu 03:21
I went into medicine because I wanted to help people. And I’m a first generation immigrant of Nigerians. And when my grandparents came to the US, they really struggled with navigating the healthcare system and finding doctors that really looked like them and understood kind of what that means to be an immigrant in the United States and understanding the cultural aspects of healthcare and not just the pathology. And so that’s what really drove me into going into medicine. I went to UC Irvine School of Medicine, and I graduated there and I went to do my residency training at the University of Iowa. I did my GI fellowship and Hepatology training at St. Louis University. And then I did an IBD subspecialty fellowship training in advanced IBD at the University of California San Francisco. Now I’m practicing at Keck Medical Center of USC where I have a really diverse IBD population.
Steven Newmark 04:24
You just heard Dr. Odufalu speaking about her journey to becoming an IBD specialist. Can you tell us a little about your patient journey as an IBD patient and how it intersects, if you will, with Dr. Odufalu’s journey.
Joshua Benton 04:36
I have had this disease for, I believe, almost 17 years now. My first symptoms began back in 2004, which was my senior year of high school. Followed was probably about three and a half years of various tests and medical examinations trying to diagnose the source of some of the different discomfort I was experiencing and it led to me ultimately not being diagnosed till 2007. That was almost four years dealing with this condition. And one of the interesting things that Doctor spoke with, right, is that the notion that this was mostly or almost exclusively a Western European condition with respect to the people who had it. And once I was diagnosed, I remember one of the first things I did was I started to Google ulcerative colitis, and people with it and you know, just wanted to get a more ground level understanding of where I fit within this whole experience. And that was actually one of the things that was very jarring was that most of the people that they spoke on on these different websites, it spoke on them all being predominantly somewhere in the Western Europe territory. There wasn’t a lot of documentation or any type of valuable information really, for me to relate to, not just specifically being black, but even just being an American with this condition, because at the time they consider this such a small percentage of our population here,
Steven Newmark 05:59
In terms of getting your diagnosis, were you lucky enough to have a champion in the medical community who got you through? How did you find navigating the medical system?
Joshua Benton 06:08
Very overwhelming, just because there’s a lot of layers, I think, to just going through the experience, even leading up to the diagnosis that maybe isn’t discussed or dressed with the sensitivity or urgency that’s needed. Nobody I knew even understood or was aware of what this was. When you asked about whether I had anybody that, whether it’s from an advocacy standpoint or somebody who can vocally support and kind of guide me through the process, no, that did not exist. I didn’t know anybody with the condition. A lot of it was kind of some type of self educating through pamphlets that my primary care physician or the gastroenterologist would provide, and that point, most of the conversations as it pertained to family, friends, even to some degree medical professionals, there was an educational component. They were learning through my experience. It was pretty lonely to be honest. That part really weighed on me, I think, a lot more than I probably would have acknowledged in the moment. But in a reflection of those experiences, I would definitely say that that’s something that I think everybody would benefit from.
Melodie Narain-Blackwell 07:14
What’s interesting, Josh, is I would say that when I was diagnosed in 2018, I wasn’t really looking for resources at that time, because I was kind of like sharing with my coaching clients in entrepreneurship. I did take a beat and like a pause to say, “Okay, let me look around because people had found me and they were telling me, I’m the first black person to be diagnosed with this disease.” Until I started to look around and I said, wow, black and brown people are literally nowhere to be found or they’re few and far between, because they’re not on any of the information materials. They’re not on the pharmaceutical websites as representative of what the patient looks like. They’re not on really any organization materials. And when you’re looking on social media, where, hello, that’s where we go in 2018 and beyond to look for community and connections. It probably was like a couple of hundred people before I found one person that may have been a person of color with the disease. But then they might have hashtagged one thing, but they weren’t inclined to really share their journey. It was just like, hey, I have Crohn’s disease, and then keep moving and living my life because of the stigma, I think, that coincides with this disease.
Steven Newmark 08:17
I wonder if, Doctor, if you could talk a little bit about experiences you’ve had with patients, particularly patients of color with IBD, trying to get them to navigate the system and any particular difficulties that you have found in the community.
Dr. Florence Odufalu 08:28
People had found me and they were telling me, I’m the first black person to be diagnosed with this disease.”It’s an incredible challenge for all IBD patients to navigate the healthcare system. Every time you have a multi-system disease that requires long term medicine and seeing a specialist it’s, it can be a challenge to really navigate who’s my doctor and what do I do and what can I do to make myself better. Especially in patients of color, I kind of hear sometimes the same thing that I didn’t really know where to turn, nobody was really believing my symptoms. And oftentimes, sometimes I hear that maybe patients felt like they were being blamed for their symptoms. And it’s really disheartening to hear and so one thing that’s coming out of all of this awareness and understanding this disease in patients of color is that we’re educating patients and we’re also educating providers. Not just gastroenterologist, but other providers that patients see before they get to our office like primary care and the emergency departments that we’re raising awareness and people can be referred faster.
Melodie Narain-Blackwell 09:29
That is an awesome point, Dr. Odufalu, because we are educating providers. Also educating industry as a whole because I remember this campaign after I got diagnosed that it was this whole IBD looks like me and it was all these friends getting together and having these posts. There were at least like 15 or 20 of them. And every IBD post that looks like me was all white. It was like maybe one I saw that had an Indian person or maybe a person who was black, but it was this whole blast thing of like yes, this is great. IBD looks like me. But no one looked around and said, “Hey, are we actually contributing to a negative narrative of disqualifying people that have been hurt, that are suffering that aren’t showing their faces.” And that, to me created more harm than it did help.
Dr. Florence Odufalu 10:16
I think we’re really just now kind of catching on that IBD is a global disease and affects all colors. And so when I’m working with industry, I’m discussing the same thing. If you look at my patient panel, it has everyone from all over the world and all different races and ethnicities. And so, yes, IBD looks like all of us. And I think we’re, unfortunately, it’s just catching on right now.
Steven Newmark 10:45
I have a question for both of you. And that is, what should patients look out for in a doctor? How do you know when you are seeing the right doctor for you? Joshua, from the patient perspective, if you don’t mind answering first.
Joshua Benton 10:57
One of the key indicators that you have a doctor that is supportive, or at least is open to supporting you the way you need to be supported, was one who’s asking questions in a way that’s not just what I would call surface level. I can’t speak obviously, from the role of a professional, but being on the receiving end, the experience sometimes is that the line of questioning is more investigative, where it’s like they’re trying to find where you fall on this chart of symptoms. They can try to kind of box you in basically and figure out these are the types of conditions you have, it sounds like this is it. And so the the issue with that is that this disease has so many different layers to it. And we’re, early on, not sure what’s connected and what’s not. There’s so many different aspects of this that you learn later on where you’re like, oh, I didn’t realize this is possibly connected or residual effect of it. The first thing they go to is telling me, “Hey, here’s what I think you have or I’m just gonna go directly to providing you a prescription.” It’s almost like it devalues some of the other parts that are really important to you like how it’s actually making you feel emotionally, not just physically. You may be dealing with even the mental aspects of having anxiety. You want a doc that is somebody who is asking questions that aren’t just what I would call kind of quantitative but are also qualitative, in a sense, where they’re going to potentially treat you holistically.
Steven Newmark 12:16
Doctor, from a medical perspective, do you have anything to add to what Joshua just said?
Dr. Florence Odufalu 12:20
From the provider perspective, it’s very important that patients find a doctor that they trust. Find a doctor that’s, number one, in your insurance network, and that covers your visits and procedures. And then find a doctor that listens to you. There are structural confines that limit the amount of time that the doctor and patient have in clinic, but make sure that your doctor is accessible through either the patient portal or through calling the office when you have questions. Patients with IBD should communicate symptoms and all concerns even if you don’t think it’s related to IBD to your doctor. Ask number one, what is your diagnosis and clarify what that means so that you can reflect on that when you get home. And then ask about the next steps. Ask about your medications and any questions that you have around medications, like what should I feel if it’s working, what should I feel if it’s not working. And then if you feel like you’re not being heard, say that to your doctor. And if you still feel like you’re not being heard, then ask for a second opinion. For patients that are maybe approaching the diagnosis of IBD and you think that you may have IBD, discuss your concerns clearly with your primary doctor and ask to see a specialist. If you have seen a specialist and they’re not hearing you ask for a second opinion. And then lastly, healthcare is a basic human right. And so educate yourself as much as you can. Go to reliable websites that either your doctor recommends or that you find online and so that you feel comfortable managing your IBD long term.
Melodie Narain-Blackwell 13:45
Josh, I wanted to ask, can you tell me if having community now versus not having it then, has it added any value? Or has there been a shift in even you and your ability to manage your IBD?
Joshua Benton 13:58
Yes, there’s certainly a difference in this. A sharp contrast in experience having that support system versus the early stages of me just experiencing the symptoms and even the initial years when I was officially diagnosed. And so a couple of the things I will say from a mental health standpoint that really jumped out, just anxiety, right? There’s a little bit of just the fear of the unknown. When you first get diagnosed, you’re just trying to get a handle on, you know, what, what does this all mean? Is my life shortened? Am I going to be able to do any of the things I used to be doing? Am I potentially on pace to get surgeries? Like there’s just all these different spectrum of thoughts. And the mental health component for me was just not feeling like I had an outlet to not only just express the concerns and the worries or fears that I might have. But also just feeling like I didn’t have to kind of talk like in this loop of experiences and those some of these things are just standard experiences with respect to you going to the doctor for any kind of condition, I think because of this specific condition and the sensitivity that sometimes come with it, or in my case, the insecurities that I had, it was very difficult having to repeat myself and just talk about it, because on some level, it forces you to relive those experiences. And so one of them for me, for example, was one of my early symptoms was like blood, blood in my stool. And I was just really embarrassed about it. Because again, I didn’t know what any of that stuff meant. Just having to say that out loud was something that made me extremely uncomfortable. And then again, there were other symptoms and things that would happen too but compare it to the last year where I really had a chance to build connections with other fellow IBD patients through COCCI. Mentally, it’s just become much easier for me to be comfortable even speaking about it. And so I think that from a mental health standpoint, being able to have an outlet where you have your medical support, but then you also have your peer support, where you don’t necessarily have to over explain everything. There’s an inherent kind of knowledge base that all of us understand.
Steven Newmark 15:56
Doctor, what are some common misconceptions with IBD?
Dr. Florence Odufalu 15:59
IBD doesn’t affect or rarely affects black and brown people. And this is absolutely not the case. IBD is emerging as a global disease. It can affect people from all walks of life and of all background. Another misconception I see from patients is that you kind of feel like you’re the only one suffering with this and that’s absolutely not the case. Just communicate what you feel with your doctor. You’re not alone and it’s not hopeless. We have so many treatments out there. But the best way to get the best treatment tailored for you is to discuss what you’re feeling, how you’re feeling, and kind of what your lifestyle is.
Steven Newmark 16:36
During the pandemic, have you found it more difficult, Joshua, to talk to your friends about what it’s like to have an autoimmune condition while there is a raging virus going on outside of our doors?
Joshua Benton 16:48
You obviously can be expanded even beyond the most recent years of us dealing with what’s going on. But to kind of keep the focus there, I would definitely say that having an autoimmune disease and knowing that that could potentially be complicated if I was to contract something else, and how that even plays with having a vaccine versus not having a vaccine, just how polarizing this topic is for a lot of people. I think it’s an opportunity, at least where I would say it kind of highlights the nature of what your relationship is with that person. And I say that part because I will say the overwhelming majority of my friends just legitimately don’t understand it. And I think that my close friends, the ones that I probably converse with on a more consistent basis, they at least take what I say. And there’s some kind of, I don’t know what you want to call it, almost just like this inquisitive nature, right, where they want to know more. “You mentioned that you have a pain that is very sharp and sudden, is that what’s happening when I see you just kind of randomly double over in pain when we’re walking, or if we’re doing this or if I see your face wince.” And that’s just one example of it, right. But the other one, as I think Melodie perfectly summed up, is just it is considered an invisible disease so you don’t look sick. And because I work out quite a bit and I’m by most accounts seen as very physically fit, people just assume because I’m walking and functioning every day, and I might work out or do certain things that, like, I’m not in pain. Having those conversations, it’s part educating them. And then on some level, though, it’s also part identifying where those boundaries need to be in those friendships. Because I always say that there’s some people where you can tell when you start to give them a lot of the details they become uncomfortable. And I can’t speak on where that discomfort comes from with those people always say, okay, note to self, I’m just gonna let them know in general, like, “Hey, I’m just not feeling well, today. I’m just having a little bit of a flare up,” and let that be. And as I mentioned earlier, with the really close friends that are more inquisitive, you tell them, “Hey, I’m in a flare up.” They’re like, “Well, what do you mean? Like, what exactly is going on?” And then I’ll tell them and they’re just like, “Oh, wow, okay, I’m sorry to hear that. Is there anything I can do to help? Or is this that.” And for me, I would say a lot of times, it’s just if you want you can check in obviously, but sometimes just understand I’m not going to be in the mood to talk. I don’t want to over explain things. And so if I just give you a general answer, I need you to respect that because you inquiring, while you have good intentions, that might be magnifying certain feelings I have or might heighten the stress which is going to complicate the symptoms I’m feeling.
Melodie Narain-Blackwell 19:17
Dr. Odufalu, I as an IBD patient, looking at the symptoms and the things that are displayed as what colorectal cancer can present as they’re very similar to IBD. And I think that that can be alarming for some of the patients in our community or can be off putting where we just completely disregarded and say I can’t have that because I have IBD. Can you share where some of the intersections are with IBD and CRC?
Dr. Florence Odufalu 19:47
Sometimes some of the symptoms of colon cancer can present similarly to what patients with inflammatory bowel disease have. Specifically weight loss, blood in your stool, or diarrhea. But we know that having good control of your inflammatory bowel disease, not just you feeling well, but when we look at your colon or your small intestine with endoscopy, or MRI, or CT, and if all of that looks healed, we know that we can reduce the instance of colorectal cancer in patients with IBD. And again, I’m going to put a plug out there to find a GI doctor that you trust and try to get control of your disease so that we can prevent colon cancer.
Melodie Narain-Blackwell 20:31
Hey, Josh, as your fellow IBD Warrior, friend, and advocate over here, I know that you have a story and a relationship to colorectal cancer. Would you be willing to share a little bit about it and how it has actually played a part in your ulcerative colitis journey?
Joshua Benton 20:47
My father passed at the age of 49, from what was initially diagnosed as stage three colon cancer. And that journey was very insightful. He worked in pharmaceutical sales. He had spent 20 plus years already working in the medical field. He also was somebody that was very physically fit, and would run miles every single day, he would eat salads. When he was diagnosed, I believe I was like 27, maybe 26, and I didn’t grow up with him. In terms of like, on a day to day basis, I was born and raised here in California. So I would spend summers with him growing up, though, and during the college era is when we got really, really close in terms of just talking much more frequently on a day to day basis. Once he was diagnosed, there was an emotional journey first, right, of just wishing that I could physically be there with him, though I was working and living in San Diego, I couldn’t be in Houston, Texas, where he was based out of to just help him navigate that. And the reality was that he was very strong and had a crazy pain tolerance. So he would downplay a lot of the symptoms. And then I would learn the real nature of what was going on talking to my aunt who also lived in Houston and was kind of like almost his primary care giver in terms of family members. Got a lot more detail and I say all those things to say that just seeing the experience of him unfortunately, having to succumb to that disease, right, and kind of going from this super muscular built 175 pound man that I looked up to as my hero to kind of literally withering to where he was less than 100 pounds, and inside of two years. And ultimately, obviously passing away from it. And I mentioned all of this part just to say because on some level, there were some very similar, I think, experiences in terms of how people would respond to it. Because of how he looked. right. He did not look sick to most people even during the initial stages where he was getting chemo radiation treatment. Me having my condition and already previously being in it for at least I would say, what five years at this point, I was at least familiar with just understanding that, you know, the reality versus the perception of it from the outside looking in can be two completely different things. That at least allowed me just to kind of support him in a very different way than I think I would have been able to or would have been restricted to if I hadn’t had a personal experience. But where I think it manifested the most was in watching how they treated him with the condition because the doctor mentioned that that’s a very preventable disease. And I know that one of the things if I remember correctly, it has to do with your diet, right. And not really consuming too much of red meat, or even consuming it all together, possibly. All of those things might mitigate that risk or just reduce the chances of it. And at that time, I was still regularly eating certain meats, I was somewhat health conscious. But again, when it came to food I had like the taste buds of an eight year old. My ex-wife would attest to that and once he passed, we had really reflected on a few things that had happened during his treatment. And one of them was just how there wasn’t really any incorporation or consideration on what he was eating during that time considering that that may have been one of the things that really put him at high risk of even contracting the cancer, right. And to my ex-wife’s credit, when my father was kind of like in the twilight of the condition, right, she was exploring alternative treatments or just methods of support. And obviously, she started looking at diets and just food in general. And obviously it was at a stage where probably wouldn’t really have helped him given how much the cancer had progressed. However, once he passed, she turned that same energy towards my condition. And my ex-wife had started exploring, okay, well how can this affect me having ulcerative colitis? And what are some of the things I could possibly do to improve my condition? And that opened the door to me exploring a plant based diet.
Steven Newmark 24:39
Doctor, from a cultural aspect do you find it’s sometimes difficult to have a conversation about what changes that need often need to be made after a diagnosis?
Dr. Florence Odufalu 24:48
Diet is a fantastic topic because everyone’s diet is a little bit different. And it’s really hard to study diet and how that affects different people’s disease. It’s an interesting topic, but it’s incredibly challenging. I know my culture, I know what I grew up with. But I don’t know everyone’s culture. And I don’t know what every specific diet entails. I love journaling. I love when patients journal and write down how they feel after they eat a certain type of food, because it really helps me and it really helps patients hone in on what makes you feel good and what doesn’t make you feel that great.
Melodie Narain-Blackwell 25:30
Wow, there’s so much to digest here from the food that we eat, whether it’s a healthy thing or help me thing. From what we have to deal with as it comes to the challenges of being people of color with educating our peers, our family members, and our providers to understanding the complications and the complexities that we are inherently having to manage as we go through our day in and day out with IBD. I want to thank you both Joshua and Dr. Odufalu for being so transparent, and just giving us your time, your energy, and your voices to be able to break these barriers.
Joshua Benton 26:09
Thank you for having me.
Dr. Florence Odufalu 26:10
Thank you for having me.
Melodie Narain-Blackwell 26:11
Thank you, Steve, for the amazing questions.
Steven Newmark 26:15
Thank you, Melodie, and thank you to our guests also, of course, and I just want to say on a personal level, I so appreciated this conversation. I honestly cannot recall a time where I was able to speak both to an IBD specialist and patients plural in a roundtable free form discussion like this, so it was great. And lastly, I do want to thank our listeners. Thank you for listening to Gut Culture, the podcast that gut checks assumptions about IBD. If you’ve liked this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us.
Melodie Narain-Blackwell 26:47
And Steve, remember that March is Colorectal Cancer Awareness Month. A disease that’s preventable, beatable, and treatable. Please, please, please get your screenings. 45 is the new 50. Thank you Josh and thank you Doctor Odufalu. From here on out, I want you to both know that we are family, insert We Are Family song. I’m Melodie Narain-Blackwell. We’ll see you next time.
Steven Newmark 27:11
And I’m Steven Newmark. Take care.
Narrator 27:17
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Episode 1
On Episode 1, Melodie and Steven discuss the challenges of living with IBD, and how those challenges are magnified for patients of color. Melodie and Steven share personal stories and speak directly to patients as they bring together years of knowledge of two incredible patient organizations.
S1, Ep 1- Got IBD? I Got You Babe
S1, Ep 1- Got IBD? I Got You Babe
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Melodie Narain-Blackwell 00:09
Statistically, we know that if you are a black patient coming into the emergency room going to your doctor’s offices, it’s a 91% chance that you won’t even get an IBD workup. There needs to be a space like this, where our community members can come and hear the truth. Hey, hey, welcome to Gut Culture. I am your host Melodie Narain-Blackwell and I’m happy to be here. What is Gut Culture? I know you’re wondering, and I’d like to kind of pass this off to my co host, Steve Newmark, what is Gut Culture?
Steve Newmark 00:44
That’s a great question. I think for the two of us, it’s bringing together our backgrounds with IBD, dealing with our own guts.
Melodie Narain-Blackwell 00:51
Right.
Steve Newmark 00:51
And the work we do for our two organizations, our two cultures and we’re bringing them together to create this new culture called Gut Culture.
Melodie Narain-Blackwell 00:59
You know, it’s funny when I hear that the first thing I think is, a little bit country and a little bit rock and roll, like it has to have some kind of music going on with it.
Donny and Marie Osmond 01:06
I’m a little bit country, I’m a little bit rock n roll.
Steve Newmark 01:09
Rock and roll,
Melodie Narain-Blackwell 01:10
I would be more inclined to say a little bit of R&B over here and on your side, Steve?
Steve Newmark 01:16
I don’t know what. I think I’m a little bit of everything, a little bit of classical, a little bit of jazz, a little bit of country, a little bit of rock and roll and a little bit of R&B. And now we got to mix it all together.
Melodie Narain-Blackwell 01:25
Yeah, I love that. The Color of Crohn’s and Chronic Illness is my organization. I’m the president and the founder. And we are now in this awesome space to be able to represent a community that has intentionally, historically been disqualified from the conversation of inflammatory bowel disease. And with that, I’ve been going around talking about it, and I met one of your amazing and esteemed colleagues, Joe Coe. And it got me in front of you.
Steve Newmark 01:54
Yeah, and by way of background, I’m the Director of Policy at the Global Healthy Living Foundation, or GHLF. And we at GHLF have 21 years of experience working on behalf of chronically ill patients.
Melodie Narain-Blackwell 02:04
Wow.
Steve Newmark 02:05
And I’m excited to learn even more and use our background and and to really focus on IBD patients, particularly the Black and Brown population that you serve so well, Melodie, and I’m excited to learn from you from the great guests that we’re going to have on this podcast, more about that specific patient journey.
Melodie Narain-Blackwell 02:22
You know, Steve, you have been around, or GHLF has been around for 21 years.
Steve Newmark 02:26
Oh, wait a minute, let’s be fair, I’m over 21. That’s all I’m gonna say, I’m legal to drink.
Melodie Narain-Blackwell 02:30
We’re the little fish on this podcast. And I think it’s such a great approach that while I feel like you may be big brother in so so many spaces, that we’ve been able to see where the synergies are, and we can only shift health equity together. It’s not something that I can do alone. And to be able to say, Hey, this is a partner that I have, we’re doing this work together. And because of this work, we’re going to inspire, we’re going to engage and we’re going to uplift communities in IBD to come together instead of being disregarded or disqualified, or underserved or underrepresented.
Steve Newmark 03:04
Absolutely.
Melodie Narain-Blackwell 03:04
And I look forward to doing that. Because I don’t know anyone else who’s doing it.
Steve Newmark 03:08
I’m very excited to take this journey with you, Melodie. Alright, enough about us. Let’s get into it. You ready?
Melodie Narain-Blackwell 03:14
I’m ready. Let’s get it poppin.
Steve Newmark 03:15
So let’s start at the top. What is IBD? And I don’t mean, let’s open up Grey’s Anatomy and figure out what IBD means, inflammatory bowel disease? What does it mean to you Melodie?
Melodie Narain-Blackwell 03:25
IBD actually means sometimes false imprisonment.
Steve Newmark 03:29
And what do you mean by that?
Melodie Narain-Blackwell 03:30
If you want me to be really transparent with you. There are times like this morning actually Steve, my disease controlled my life. I was so sick, having knots in my stomach out of nowhere, there wasn’t a food trigger, it wasn’t an environmental trigger, it just came. And I almost canceled our time because I said I can’t stand right now, I can’t do this, I can’t think straight, I can’t walk. I’m in pain, my stomach is twisting. And for me a lot of times I have to go and sit in the restroom to actually perform work, because I know that my body is tied to that space, or I won’t be functional. And that mental imprisonment, if you don’t know that this is how to separate this, to say, you know, this is just the space that I have to work in and I’ve adapted like me. I have a desk in there. I have a phone in there, charger, table, whatever I need.
Steve Newmark 04:19
Wait, where’s this your bathroom?
Melodie Narain-Blackwell 04:20
This is my bathroom.
Steve Newmark 04:23
Wow.
Melodie Narain-Blackwell 04:23
But I’ve learned to say I’m not going to allow IBD to paralyze me from being productive.
Steve Newmark 04:28
Yeah, but the way you’re describing it, even when it’s silent, it’s still there.
Melodie Narain-Blackwell 04:32
Always.
Steve Newmark 04:33
It’s ever present. You can never fully plan for it. Is that fair to say?
Melodie Narain-Blackwell 04:36
Yes. Yes.
Steve Newmark 04:37
So it’s not just the mental imprisonment. It’s the physical imprisonment too.
Melodie Narain-Blackwell 04:41
It’s absolutely mentally and physically oppressive, in some ways. You can’t fully plan for it. But once you’ve been in a space to navigate it, and I always say that I’m the anomaly because I’m a patient who didn’t know that I had this disease for 30 years. So I had to get up every day and there were times, there were weeks literally, where I would have these gut wrenching stomach pains. And I would have to just prepare and say, Look, you got to get up, you got to get to work.
Steve Newmark 05:07
And you didn’t know what it was?
Melodie Narain-Blackwell 05:08
No, take the pink stuff, take the liquid stuff, like whatever I could get in my body to make me functional. That’s what I did. And I think sometimes with me, because I operated like that for so long, I don’t give myself enough space to actually be a patient.
Steve Newmark 05:22
Certainly a tough way to live for anyone, but specifically for you. If you don’t mind me going directly at it, as a black woman, how does your patient journey differ from that of a white woman?
Melodie Narain-Blackwell 05:32
Statistically, we know that if you are a black patient coming into the emergency room, going to your doctor’s offices, wherever you’re you’re receiving your care, it’s a 91% chance that you won’t even get an IBD workup. And while that’s a stat that I hear, it’s a stat that I believe because I didn’t I never got one. I never got one until I was completely at a loss, a loss of mobility, loss of my hair, loss of management of digestion, loss of bowels. I was oozing and it took all of that for me to finally get a workup to say you may have this disease. Well, thank you Sherlock, for finally including space, but I’ve been suffering with stomach ache since I was six and bleeding rectally since I was 13. It took me until I was 35 to get a disease diagnosis.
Steve Newmark 06:20
Wow.
Melodie Narain-Blackwell 06:20
So that’s a huge difference right there. I wasn’t even qualified to get the workup.
Steve Newmark 06:25
So the time to diagnosis. That’s a big factor.
Melodie Narain-Blackwell 06:27
Yes, that’s a huge barrier in this community. Reducing the timeframe to diagnosis is important because people begin to suffer things that they should not have to be enduring because we know the unpredictability of of these digestive diseases even after you’re diagnosed. So imagine what’s going on when you’re not diagnosed, and you’re trying to manage this. So it’s a big space. That’s a huge difference. And it’s a huge disparity that prevents any kind of wellness for a long time.
Steve Newmark 06:55
You know, hearing your story, it really brings it to life. That said I know of a 20 year study from the Institute of Medicine that found that black patients were 22% less likely than white patients to receive any pain medication.
Melodie Narain-Blackwell 07:07
Yeah, I’m inclined to believe that it’s much higher than 22%. I think these stats are always so awesome to hear. But I definitely believe that there’s a disparity and even that and it’s distorted information. I know firsthand from community members in Cocci about their experiences with pain. And recently someone told me who has ulcerative colitis, who is also a veteran, that the hospital just kept saying he just wants to be medicated. He just wants pain pills. There’s nothing wrong with him. And this gentleman has been several days crawling on the floor from pain from his U.C.
Steve Newmark 07:41
That’s distressing to say the least to hear from any patient, you know, and bringing it back to gut culture and why it is that we are here, I think it’s imperative that we have our little platform to build a community of IBD patients.
Melodie Narain-Blackwell 07:53
Absolutely.
Steve Newmark 07:54
To let patients know that they’re not alone. There are literally millions of individuals living with IBD in United States.
Melodie Narain-Blackwell 07:59
Absolutely. And you know what, Steve, you just said little. I think everything we’re doing is big. Culture is big, exposing the truth is big.
Steve Newmark 08:06
Here, here.
Melodie Narain-Blackwell 08:06
Being a part of the avenues that get people to results that take, so we’re not little we’re big.
Steve Newmark 08:12
Okay. I like that. You know, for so many people they hear IBD on Sundays while watching football or something, you know, one of these strange commercials living with IBD? You know, and it’s so esoteric, almost.
TV commercial 08:26
Abdominal pain. Urgent diarrhea.
Steve Newmark 08:31
What you know, it’s hard to understand what that means. But I think it’s important what we’re doing, we’re trying to provide a face and make it real for people.
Melodie Narain-Blackwell 08:39
I would even stretch that a bit that until recent times, the commercials that I have seen are people that all it is is a stomach ache, that they kind of they might hunch over or they have like a bad mood.
TV commercial 08:49
Hey, ready for the big meeting? Yeah.
Melodie Narain-Blackwell 08:51
And then it’s like, life is great and I’m doing this and I’m rock climbing and and I’m swimming the Indian Ocean, you know, they’re just doing great living these lives that are are completely adventurous and inclusive. But the challenge is that that’s not everyday life for patients.
Steve Newmark 09:08
You mean you’re not climbing rocks and mountains while you’re suffering, Mel?
Melodie Narain-Blackwell 09:11
You know, I do just the ones that are in my dreams.
Steve Newmark 09:15
Okay, fair enough, fair enough. You know what, all kidding aside, what’s going on in your mind, sometimes those are the biggest mountains actually, those are the biggest hurdles.
Melodie Narain-Blackwell 09:22
Absolutely. And those are the best ones to climb if you have IBD because whoever’s behind you, they could be in for a rude awakening.
Steve Newmark 09:29
And that’s true, literally, as well as figuratively.
Melodie Narain-Blackwell 09:32
Now, we’ve seen these commercials where that’s where they show life is. Here’s where if you have this and you take this medication, life now goes here. And I think like that is an unfair space. Of course, they want to show people feeling good and living well, but I think even companies that are showing us after having the medication, they should show something that’s more realistic so people can say this is an attainable life, like I can now actually go to Thanksgiving dinner.
Steve Newmark 09:59
Yeah.
Melodie Narain-Blackwell 09:59
I can now I have Christmas with my family.
Steve Newmark 10:01
Or go to a meeting without having a bathroom that doesn’t have a desk in it.
Melodie Narain-Blackwell 10:04
Yes, absolutely, outside of your toilet.
Steve Newmark 10:07
Yeah.
Melodie Narain-Blackwell 10:08
We’re now in so much Zoom, everything is Zoom, Zoom, Zoom, people aren’t even able to attend Zooms that are having challenges with their IBD. But I think there needs to be a more realistic approach because people that have IBD are living everyday lives, they might want to walk through the city, they might want to take a stroll in their cars, but to take it from the approach of, oh, you’re not well, and you’re bent over with a stomach ache, to now you are a stuntman for, I mean, not saying that it can’t happen. But for Hollywood.
Steve Newmark 10:37
You’re going to be in Mission Impossible 7.
Melodie Narain-Blackwell 10:38
Yes, yes.
Steve Newmark 10:39
There’s got to be something in between there.
Melodie Narain-Blackwell 10:41
There has to be and I believe that that would even present a better buy in for us as patients because we can say, Yeah, I’ve been in that space. And this actually does feel good. This feels attainable to get over here. But everything has to be so far fetched. We don’t want farfetched life, we want to better managed life so it gives us a quality to live everyday life.
Steve Newmark 10:59
Right, right. I don’t care how healthy I am, I’m not climbing a mountain, I got things on my to-do list and that that’s not in there.
Melodie Narain-Blackwell 11:05
I mean, you never know Steve, life presents us with a lot of opportunities that we never expect to have.
Steve Newmark 11:10
I’ve got things on my to do list. And that’s not one of them.
Melodie Narain-Blackwell 11:13
I do believe that there needs to be a space like this, where our community members can come and hear the truth. Because what’s not delivered are all the other symptoms that come along with IBD. You see the stomach aches on the commercials, and then you see the rock climber. But what about the person who has, suffers the fatigue every single day, they can’t get out of their bed and they can’t move. The person that has fistula so they’re getting these tunnels, these holes, this is not the scientific terminology for it. But it’s the Melodie terminology for it. They’re getting these extra tunnels from their colon that could either connect to their bladder that could connect to their vagina, if they’re a woman, that can even connect for men to testicular areas, like these are tunnels that are being created from infection and pus. And we’re not being educated on that, we’re not educated on the fissures or the abscess. And people ignore these for a long time. And honestly, if you’re a young adult in college, and you’re sexually active, you might even think it’s an STD.
Steve Newmark 12:10
Shockingly, people are not going to become fully educated over a 30 second commercial.
Melodie Narain-Blackwell 12:14
But you know what, they’re also not going to be educated in a 15 minute podcast, and this is why we’re doing the work. This is why we’re here because these small excerpts of information aren’t giving us enough.
Steve Newmark 12:25
Right? I have a list of questions, Melodie, that I am planning to ask you and our guests as we go through this journey.
Melodie Narain-Blackwell 12:31
Steve, I’m excited. I’m ready for whatever you have. So bring it on. I can’t wait to answer those questions, get my question asked and then build this space for this community to know that they’re seen. They’re heard and they’re supported and they will never have to do IBD alone, ever again.
Steve Newmark 12:45
You know, living with IBD can be very tough, but there is one upside and that is you get to meet great people on the journey. And I feel very fortunate to be here with Melodie.
Melodie Narain-Blackwell 12:55
Yeah, I feel the same. I feel like sometimes with these, these relationships, we can make it a praise fest. But outside of praise fest, this is a relationship that will endure. Because, like one of the famous couples of what the 70s I would say, when it comes to this journey of Gut Culture, I got you babe, and you got me.
Sonny and Cher 13:15
Babe, I got you babe.
Steve Newmark 13:20
Okay, so we started with Donny and Marie and we’re ending it with Sonny and Cher.
Melodie Narain-Blackwell 13:24
I mean, would you like me to throw in some Lil Jon?
Steve Newmark 13:26
Yes, please.
Melodie Narain-Blackwell 13:27
Some Waka Flocka?
Steve Newmark 13:28
Yes, please.
Melodie Narain-Blackwell 13:30
Okay then, let’s oh, let’s do it. Oh, let’s do it.
Sonny and Cher 13:33
I got you babe.
Steve Newmark 13:36
Alright, so you got to hear our little take.
Melodie Narain-Blackwell 13:38
Steve, Steve, no more little, we’re big. We’re big
Steve Newmark 13:41
Right. Thank you for listening to Gut Culture, the podcast that brings together two cultures to explore living with IBD. I’m Steven Newmark with the Global Healthy Living Foundation.
Melodie Narain-Blackwell 13:52
And I’m Melodie Narain-Blackwell with Color of Crohn’s and Chronic Illness. We’ll see you next time.
Narrator 14:01
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
About Our Hosts
Melodie Narain-Blackwell
Melodie Narain-Blackwell is a passionate health advocate, educator, mobilizer, and the founder of Color of Crohn’s & Chronic Illness, a nonprofit dedicated to health equity and BIPOC communities that are challenged with digestive diseases and chronic illnesses.
Steven Newmark
Steven Newmark is the Director of Policy and Chief Legal Officer for the Global Healthy Living Foundation. Steven is responsible for identifying relevant issue areas and working with the Advocacy Team to craft responses and campaigns to help improve patient lives. He previously served in various health policy roles in government, and as an attorney dealing with life sciences issues.
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