Podcast Transcript: Living Life Powerfully with Crohn's Disease

By Sacha Heppell - July 28, 2020

 


Sacha Heppell

Welcome to Who Would Have Thought. My name is Sacha Heppell, chief marketing officer of SmartTab And I'll be hosting this podcast with Robert Niichel, our founder and CEO. Robert has 15 years experience of leadership and management in pharmaceutical research and development. He founded SmartTab in 2016 to combine wireless technology with pharmaceutical drug delivery. What it's like for patients? Their voice fuels our mission and drives our innovation and we're making significant advances in how Crohn's disease will be treated in the future with our first application TargetTab, a targeted drug delivery system. With that, I'll pass it over to you, Robert, to introduce our first extraordinary guest.

Robert Niichel

Thank you, Sacha. And a big welcome today's Natalie Hayden. Natalie's a former TV news anchor with Crohn's disease living in St. Louis, Missouri. Her mission in life is to be an advocate for those battling inflammatory bowel disease and to show that a chronic illness does not have to dull your sparkle. Natalie's blog, Lights, Camera, Crohn's - An Unobstructed View, covers everything from overcoming struggles to celebrating small victories. Natalie's focus is to inspire others and connect them with those battling IBD in an honest and transparent way. As a passionate health advocate, journalist and parent, Natalie strives to show there's more to life than your diagnosis and illness. So welcome, Natalie. Thanks for being on the podcast today, on the show today, and just to kind of dive right into it, can you share with us your IBD story and kind of how you started your blog and then maybe talk a little bit about your blog and we'll kind of take it from there.

Natalie Hayden

Absolutely. Thanks so much for the warm welcome. So I was diagnosed with Crohn's disease in July 2005 at age 21. I was a recent graduate of Marquette University out of Milwaukee and had aspirations of being a television journalist, but I was blindsided with this chronic illness right after college graduation so as you can assume, it was a difficult time in my career and in my life just getting into adulthood and being given this chronic illness diagnosis. So I was given the disease diagnosis on July 23rd, 2005, and I was put on 22 pills a day and just blindsided by this illness. I was the only person in my family with inflammatory bowel disease. And it was very isolating, very daunting and overwhelming.

Natalie Hayden

And I chose to not share it with anybody other than close family and friends, because I ended up going into the television industry that October. On 22 pills a day, I moved eight hours away from all family and friends to Minnesota and worked at an ABC affiliate as an evening producer behind the scenes, even though I had aspirations of being on camera, but because I was on so many medications with heavy duty side effects, my cheeks were very large. I didn't look like myself. So I started out behind the scenes just to get my foot in the door.

Natalie Hayden

And at that time, when I started my TV career, which ended up lasting about a decade, I chose to just keep everything quiet. I didn't want people to look at me differently. I didn't want people to think, "Oh, that's Natalie, the sick news anchor. We feel so bad for her." So I chose to suffer in silence, which looking back, I wish I didn't do that. I wish I used that platform to help and implore others to share their stories. So when I left the news desk in November 2014, after being a morning news anchor for seven years, I said, "You know what? I really want to use my journalism skills, my love for writing and share my patient journey and be the voice I so desperately needed to hear upon diagnosis." So I launched my blog, Lights, Camera, Crohn's - An Unobstructed View, on July 23rd, 2016. And I've shared fresh content every single Monday since so we're coming up on four years.

Robert Niichel

Yeah, very exciting. Wow. What a journey. For people that are out there that are maybe unfamiliar with this disease, could you talk a little bit about the initial symptoms, kind of early onset, kind of what it does to you physically and then mentally as well?

Natalie Hayden

Absolutely. So when I was younger, I was an athlete. I played soccer, basketball, track year round. I was a picture of health. I never even had an ear infection in college. I felt well most all the time. But senior year, second semester, I started feeling like I had to go to the bathroom more often and I just attributed that to going out too much and maybe eating a little bit too much Taco Bell. You're 21, just living the good life. And then we went on spring break to The Bahamas, my girlfriends and I, and I had excruciating stomach pains and I thought that was food poisoning from traveling and then fast forward two months, and I started having pain every time I ate or drank anything. I was having fevers up to 105. I was so fatigued and so lethargic, I couldn't even go up my parents' 13 stairs in their house.

Natalie Hayden

And it got to the point where my general physician, she was doing ultrasounds and blood tests and thinking it was my appendix and my gallbladder and everything was coming up pristine. And finally, I was so sick, I couldn't even shower. I had no energy. My mom brought me into the emergency room. I was given a CT scan of my... Sorry. I was given a CT scan of my abdomen and rectal exam and it's almost unheard of, the ER physician walked in the room and said, "It looks like you have Crohn's disease." So unlike many people, I received my diagnosis in the emergency room and I was hospitalized immediately for being dehydrated, malnourished. I needed to get a colonoscopy the next day. So you go from being this healthy person, you walk into the hospital as one person and you walk out completely different.

Robert Niichel

Yeah. Wow. Wow. And then let's talk about the first year after you found out you had Crohn's and when we talked prior, it was kind of a mental challenge and struggle as well. So maybe talk about the first year, how you work through that, and then how you kind of recalibrated, I guess, to take this positive spin on helping other people out.

Natalie Hayden

Sure thing. The first year of receiving a chronic illness diagnosis, whether it's IBD or another illness is so incredibly challenging because you are grieving your former self and then trying to relearn who you are. Who's this identity? Who's this person? You look in the mirror, you don't recognize yourself because you're on so many medications and dealing with so many uncertainties that you feel very lost and alone. And there's family members and friends that are trying to be empathetic and trying to be there, but they don't have your illness and your reality so they can't quite grasp it. And it's very complicated to explain what the stomach pain feel like. What does this fatigue feel like? It's not just waking up feeling tired. It's next level. A cup of coffee doesn't fix it. It's very challenging because you're trying to relearn who you are.

Natalie Hayden

And I often say, "Get through that first year of Crohn's disease and you are going to be a completely different person." And now 15 years down the road, I have a lot of gratitude towards my illness because it really shaped me into who I am today and gave me a different perspective, level of empathy for others and understanding of just walking outside on a beautiful day and not taking things for granted. Prior to being given a chronic illness diagnosis, many of us feel invincible. We just expect to feel well every day, especially when you're in your 20s and when that's robbed of you, you really have to rethink what's important in life, what are your priorities, and also keep your eye on the prize.

Natalie Hayden

Don't think that just because you receive this diagnosis means you can't work and find your dream job. You can't find love. You can't be a parent. There's so many ways to get to that point, but first you have to have self love and you also have to figure out how are you going to navigate this and what tools are you going to need in your arsenal to get through?

Robert Niichel

Yeah, very interesting. And then let's kind of fast forward to today. Obviously, the last six months with the COVID-19. I think the audience is really interested in how has that shaped and really what type of adjustments have you had to make for treatments, or I think you've mentioned last time, even family members don't go to the doctors because they're afraid and then maybe touch on how the immune system is also affected so kind of the aggregate comment on the entire COVID-19 and how you've had to make adjustments there.

Natalie Hayden

COVID-19 has been a difficult landscape to navigate for everybody, let alone somebody who's immunocompromised. And I think prior to this pandemic, many of us have been immunocompromised for years. I've been immunocompromised for, I'd say, 12 years from my medication. So I've always felt this way. I have a better chance of getting sick. I have to be extra mindful of handwashing, all the things that people are just now learning about. And I feel like this pandemic, while it's been extremely excruciating and not pleasant in the least, it's also kind of shed light and spread awareness about how many people actually are immunocompromised and informed people and educated them about the reality of how many people close to them in their lives have immune systems that are suppressed.

Natalie Hayden

So just because you have inflammatory bowel disease, does not make you immunocompromised. It's a medication that the patients are on. So just because you have Crohn's, does not make you at higher risk. It's those biologic drugs. It's the different drugs out there, steroids in particular, really knock out your immune system because when you have IBD, you have an overactive immune system so when you get sick, these medications are working to fight off your immune system so it's kind of a battle of your body's fighting the good. So you have to recognize the fact that the medication that you're on is working wonders for your IBD, but it's also detrimental in the fact that it can make you sick to other things.

Natalie Hayden

So COVID-19 has been challenging because as you've seen many people aren't wearing masks and many people think it's a hoax, many people I see on social media saying, "Do you actually know anybody who's gotten COVID-19?" I know several people that have gotten COVID-19 and when you have a chronic illness and you think, "Oh my goodness, with IBD, I could flare tomorrow and have to go into a hospital right now for my Crohn's, but then be at risk for COVID-19 and then I have no visitors at my bedside." And it is absolutely petrifying because I've had several hospitalizations through the past 15 years and my mom or my spouse, they've never left my side and to think about navigating a bowel obstruction or surgery on my own and then also be at heightened risk for COVID is very, very worrisome. So that has been a looming fear of mine, just not so much getting COVID outside of the hospital, but having a flare and having no other choice, but needing to seek medical treatment within a facility.

Natalie Hayden

Luckily, my medication is done at home by an injection. So I haven't had to go for an infusion, but I have had to go for blood work. And I was very, very nervous about that because I went back in May. And at that point, I'd only left my house one time since March 12th. And luckily, my GI was able to coordinate it so they have special hours for immunocompromised and they text you from your car and you're the only person in there getting your blood taken and then you walk out and you have your mask on so I felt very safe. But it's those little touch points along the way where you think, "Is this calculated risk worth it? Who am I putting at risk?" And then there's also you feel bad because my husband, my kids, they're all perfectly healthy, so maybe they could do a little bit more social distancing get togethers and those sorts of things. But we've had to sit out a lot of hangouts with friends and family, because it's just not worth the risk.

Robert Niichel

Yeah. Yeah. Very difficult times for sure. As we talked about before, having a family and so the question then is maybe just talk a little bit about and share what's it like to be a parent and working through with the family, with the children, with your husband and kind of what that all just looks like and how... You touched on that a little bit with COVID-19, but even before that, and then once this pandemic's over, how do you just navigate and balance all those activities?

Natalie Hayden

Motherhood and IBD is such an interesting topic and something that interests so many people, because oftentimes, people are diagnosed in their childbearing years. They're teenagers, they're kids, or they're in their early 20s and their first question, especially their mom is wondering, "Will my child ever be able to have a baby?" And then you have to think about, "My body's riddled with illness. How's it going to bring a miracle into this world?" So you have a lot of questions going through your mind, "Will I be able to stay on my therapies? Will I flare during pregnancy? Will my body be able to create a healthy baby?" All of these things, you worry about your future children getting IBD because of the hereditary aspect. Luckily, that's only about a 4 to 10% chance when one parent has IBD, but still it's something that you worry about because you know how challenging the illness is and it's heartbreaking to think of your own child one day maybe having to deal with it.

Natalie Hayden

But those are all things that you come to terms with. And if that's something that you want and you hope and dream of, there is no greater motivator in my life than being a mom and getting to look at my kids and say, "I have to be strong for them." Even when the going gets tough and I'm spending 10 times in the bathroom and they're at my feet playing, I look at them and I think, "I've got to be strong. I've got to push through this." And they're really what inspires me to get through the really, really difficult moments. Prior to having kids, I kind of tried to be a superhero and I would just wait. I refuse to wave the white flag and say, "I don't want to get medical treatment. I don't want to go to the hospital." And I'd stay home until last possible moment.

Natalie Hayden

And there were times when my dad would have to carry me as a 26 year old into the emergency room, like a groom carries his bride over the threshold. I was that sick where I couldn't even walk through the door by myself. So nowadays, when I do have symptoms, I've realized the minute I feel a symptom, I write my physician on the patient portal. I don't try to be a superhero. We nip it in the bud with a burst of steroids or medication, and we get everything under control and because of that, I've been able to stay in remission for nearly five years and I haven't been hospitalized since becoming a mom. And I think that one fear that many mothers have is having to be hospitalized and be away from their families.

Natalie Hayden

And my hopes and dreams were always, I want my kids to be able to walk before I get hospitalized. I at least want them to be able to walk into the hospital room to visit me. I don't want them to be babies. And my daughter just started walking this past month and my son's over three so now both my kids are walking. Now I hope I can stay out of the hospital until they're 10 years old. I just keep pushing that goal further along for myself. But I also have noticed in my children at such a young age, that when your parent has a chronic illness, you have an innate empathy within yourself because they're seeing me give myself injections. They're seeing mommy get her tummy's hurting. They're seeing mommy run to the bathroom and feeding. They're seeing so many things that a typical child doesn't see that it's really quite amazing when you see what your child is capable of at such a young age.

Robert Niichel

Well, and congratulations on the children walking. Those are neat milestones as we raise our families. One last question from myself then Sacha is going to ask you some more kind of technical pharmaceutical types of application questions, but really the last question to leave our audience with is what advice do you have for other Crohn's patients and either ones that are early stages just recently being diagnosed and then longer term, how do you weave through everything through their lives? So if you could touch on the advice a little bit, that would be wonderful.

Natalie Hayden

My main goal in my advocacy is to help people that are newly diagnosed because they are in the worst part of the entire patient journey. This is new territory. It's scary. It's overwhelming. It's daunting. There's so many stories on the internet that are scary. There's so many people posting on social media boards and sharing their own journeys, which is great in some ways, but can also be very detrimental because IBD is so unique in each individual that people get very scared about medications or treatment options because they read one person got cancer from it, or another person died from something. And I think that it's important to recognize that your disease is part of you, but it's not all of you. And you have to come to grips with the fact that I truly believe that God gives his toughest lessons to his greatest teachers.

Natalie Hayden

And there is a innate perspective that you are going to gain from this. And it's not to say you're a bad person prior to diagnosis, but once you come to terms with what this illness means in your life and how it impacts your day to day and the conversations that are going on in your mind and the decisions you're making, it shapes you into be a completely different person for the better. People often ask me, "If you could give away your Crohn's disease, would you never be diagnosed?" And I actually say I would keep it because it has made me into the woman that I am. I'm not saying I'm perfect, but I'm saying that it's really opened my eyes to a lot in the world. And I just kind of always expected things to be perfect in my life and white picket fence life.

Natalie Hayden

And when the rug's pulled out from under you and you are forced to be strong and resilient and brave, it just makes you so different. It's very hard to explain until you've actually lived it, but it's something that many people become grateful for. And I want people to look in the mirror and realize that their current situation is going to be ever evolving. And every hiccup, every setback, every flare up is just a short blip in the whole scheme of things. And it's actually those flare ups and those setbacks, they're going to empower you in the future as you reflect on all that you've accomplished and all you've endured and they're so short lived just as the amazing moments are.

Natalie Hayden

So everything is fleeting, whether it's pain or wonderful moments, and you will get through it, just get to a good mental health space, communicate with those close to you, do not bottle up all your emotions and your fears inside because that stress is actually a trigger for your illness. Ask for help if you need it and don't feel less than. You are still an equal to your peers. You are not less than. You can still achieve all your dreams. They might just be on a different wavelength or a different timeline than they originally were, but you can still get there.

Robert Niichel

Yeah, very impressive. And I've been impressed also with the venue and the blog and truly, what you're doing, it does help people beyond just the Crohn's disease, how you can remain positive, how you can remain balanced, how all of these activities apply to the family. And so that's very impressive that your mission expands way beyond just Crohn's disease. So thank you for that. Now I'm going to turn over to Sacha and let him ask some questions.

Sacha Heppell

Yeah. Looking at pharmaceutical companies, digital health companies that are innovating new solutions for IBD, what are some of the things that you think pharma companies, digital health companies may be missing when innovating to improve life for IBD patients?

Natalie Hayden

It's so important to amplify the voices of patient advocates and people who get the disease because they live it on a daily basis. I think that within the community, there's often a distrust with pharmaceutical companies and digital healthcare companies, because people just think it's a business and that's all that is about. Whereas, when you put the face of a patient or a credible blogger or an advocate with sharing their story and using them on the front lines and using their face and likeness, people will say, "Oh, Natalie, I actually read her blog. I trust what she's saying." So it's really important that you bring patients to the table for these discussions, because we can provide them valuable knowledge and expertise because we've lived it and we get it.

Sacha Heppell

Yeah. You've been at the table with a lot of these companies. What aren't we realizing that we should about IBD?

Natalie Hayden

I think just the complications of, even though you're in remission, it is still very complicated disease. So I think many people just look at you on the outward appearance and say, "Oh, she looks healthy. She looks like she's doing well," or "She hasn't been hospitalized in five years. IBD must not be a big deal to her." But IBD is a part of my life every single minute of every single day. Every decision that I make from the moment I wake up until I go to bed is all revolved around my Crohn's disease. So for instance, "Do I want to drink a cup of coffee or do I have this podcast interview and it's going to make me run to the bathroom? Am I going to need to eat this meal right now? Should I have cantaloupe? Or sometimes that's a trigger food for me and I don't want to have a stomach pain by myself with my kids."

Natalie Hayden

So every little thought is all revolved around your illness. So you can imagine, 15 years of that constant inner conversation that you can not shut off. You're in the car and you don't know where the next rest stop is and you have to use the bathroom. Or you're in a huge meeting with a bunch of professional people and you can't even sit with your pants button because you're in so much abdominal pain. Or you're at a family party and you venture out and you try an appetizer and it doesn't sit well with you, but you haven't seen your family in months so you're sitting there in agonizing pain, trying to put a smile on and suffering on the inside.

Natalie Hayden

There's so many little touch points that go on. So even when someone's in remission or they haven't been hospitalized or maybe their drug is working well for them, there's still so much mental and physical aspect of things that goes on it. I don't think people really understand, and there's just not enough awareness or education. It's gotten so much better through the years, but even people that know me well, they don't even ask me, they can go years without asking me how my Crohn's is until I'm hospitalized. So I think just creating that conversation of what is the day to day life for somebody with IBD, whether they're in remission or not.

Sacha Heppell

Yeah. That curiosity for the concerns that you have as a patient with IBD, those concerns are not concerns that everybody else has. And how could we really get the day to day concerns and the what is life like really?

Natalie Hayden

I think that's what's so many advocates are really striving for with blogs and podcasts and writing articles for different apps and different things as we're trying to give you that inside look into what does it look like to be pregnant with IBD? What does it look like when your baby's sick and then you're worried about getting sick from them? I was hospitalized in October because my son had a stomach flu and I got acute gastroenteritis and leukopenia, which is my white blood cells crashed because I'm immunocompromised and I was hospitalized overnight with just the basic stomach flu. But when you're a mom and you're kid's puking, what are you going to do? You have to take care of him. So it's moments like that behind the scenes that we can really give an insight into that I think is so important because especially for the newly diagnosed, they might just see the doomsday. All they see is the hospitalizations, the new treatments, the doctor's visits when really, it's the day to day that people struggle with.

Sacha Heppell

So what you're saying is the day to day moments is the most important. How can we improve the day to day life, not wait until it gets to the point where it's an emergency?

Natalie Hayden

That's a good question. I wish I had the answer because if there was a way to do that, I'd be right on it. I think it has a lot to do with recognizing the symptoms your body's trying to communicate to you and learning what those symptoms are. For instance, last night, we actually, for the second time since March, we had our in-laws over with my two nephews and I had maybe two sips of alcohol and chocolate chip cookie, and bam, I had gnawing abdominal pain. I haven't had abdominal pain in three weeks. Instantly, I think, "What decision did I make wrong there? Should I not have had the sugar? Should I not have had the alcohol?" And it was literally I took one sip of alcohol, swallowed and the pain started. That's how quick it happens. So it makes you start questioning yourself on a daily basis.

Natalie Hayden

So I think just giving people the resources and the tools. So many patients don't have any support network. There's people that have no siblings, no significant other, maybe their parents aren't in their lives and they're given this diagnosis and they have to navigate it on their own. So really, being a lifeline of support, just to communicate with somebody and to show them that they're not alone in their struggles and their thoughts, what they're thinking, how they're dealing with things.

Natalie Hayden

It's a very isolating disease. Nobody really wants to talk about going to the bathroom or being in pain all the time and feeling like they're a weak human being when really they're not. But when you're dealing with those things, you start thinking, "Is this all in my head or is this legit pain?" And now, especially in the recent years with the opioid crisis and people not prescribing pain medication, my GI hasn't given me pain meds in five years. And I could really use them. I'm not going to use them to a detriment, but maybe once or twice a year, I really need something like that. But because others abuse them, unfortunately, those of us with chronic pain problems, we are missing out on being able to use medications like that, which is really unfortunate.

Sacha Heppell

And what do you see could be a way to improve that?

Natalie Hayden

I think it becomes almost intimidating when you see somebody in a white coat and you go into a doctor's appointment, you think, "I have this list of questions. Here's what I'm going to ask." But then even if you have a great rapport with your doctor, even I have a hard time asking. I asked in my last appointment if I could just have maybe a month's worth of pain medication to get me through the year. That's how few times I use it. And she actually said no. So when you're told that, I think that it just kind of makes it seem like people just push aside your pain and aren't really worried about what your day to day life is.

Natalie Hayden

And that can get really stressful when you just want to be able to manage things yourself when you've had this illness for so long and you know that you can sleep through the night better if you just take a pill before you go to sleep and you're not going to abuse it, but hey, once in a blue moon, if I'm an excruciating pain of a level of an eight or nine, and I don't want to go to the hospital, because I know it's not a flare, I think that they should really empower patients to make those decisions and have these conversations and really trust their patient. When you've had a patient for so many years, you would hope that your physician would be able to trust you and know that you're going to make decisions for your best health.

Sacha Heppell

Yeah. Because it's not a one size fits all treatment. There's a lot of talk about personalized medicine, precision medicine. What are your thoughts on that?

Natalie Hayden

I think that's so exciting. Precision medicine and treating to target is the big talk these days with IBD, not just blanketing everybody under one umbrella and saying, "Okay. First, we're going to do a step therapy approach and give them a mesalamine first and they fail that, then we'll go to a biologic." Now they're really looking at where is your Crohn's? Where is your ulcerative colitis? Which biologic can best treat this? And what I think is so promising and exciting is when I was put on a biologic in July 2008, 12 years ago actually next week, there were only two biologics on the market. There were Remicade and Humira.

Natalie Hayden

Fast forward to 2020, now with biosimilars, I actually just looked this up today, there are 12 biologics on the market. That is from 12 years, we have developed 10 new biologics, which is so, so exciting for our community. Because prior to that, if you tried Remicade or Humira and it failed you, you were kind of out of luck. Now you can try different medications and really target your therapy according to your disease process. If you have fistulas, if you have it in your large intestine versus your small, your physician is going to tailor that approach accordingly, which is a huge win.

Sacha Heppell

Yeah. If you had a magic wand, what would the future of IBD treatment look like and how could it make the patient experience more empowering?

Natalie Hayden

One of the most challenging parts of the patient experience medication-wise is steroids and also biologics. So the steroids have very challenging side effects to deal with. And then the biologics, you either get through an injection or an infusion at this point for IBD. So many people struggle with self-injection. Many people don't like getting an IV. Many of us had bad veins. So if we could get a biologic without having to get a needle prick or inflict pain on ourselves, for many people, especially the pediatric community, that would be a huge, huge benefit and helps so many people. I know people that have to take anxiety medication prior to doing their biologic. That is how worked up they get about needing to give themselves an injection. So I think that would be really, really huge.

Natalie Hayden

I also think it'd be great if physicians around the country and around the world really partnered closely with patient advocates and utilized us as mentors and brought us on to help them really diagnose patient to walk through that parent whose child was just diagnosed who wonder, "How am I supposed to navigate this with my child? We have no family history." And they're trying not to be a helicopter parent or overstep their bounds, but they want to help their child. I think that there's so much work that people that are veteran patients can be utilized for and we're really just breaking the surface.

Natalie Hayden

When I was diagnosed in 2005, patient advocacy really didn't exist on any level. Facebook actually was created the year I was diagnosed. People weren't going on social media and sharing their patient journeys. Now you have hundreds upon thousands of IBD advocates right at your fingertips on Instagram, Facebook, Twitter. You look up hashtags, Crohn's, IBD, colitis, you're going to see all these people. And these companies can really do research pretty quickly and see who they should reach out to much like you guys reached out to me and then you create these partnerships and you think, "How can we help people?" And when we collaborate together, I think the options are really limitless and it's so exciting to see what the future could hold.

Sacha Heppell

Totally. Totally. Now bringing digital technologies into the mix, have you had any experience with the digital therapeutic apps? There's a lot of new apps that are coming to the market to support patients with IBD.

Natalie Hayden

There sure are and there's so many great apps out there. I've actually had the opportunity to contribute and write and be a patient ambassador for several of them. Oshi Health, I was a contributor for, for a few years and I currently am a patient ambassador for Gali Health, which is an AI app that's just really awesome. It's, to me, the best app out there. And then I also do work with IBD Health Lines app, and I do live chats on there with the community and we talk all different topics and it's live and we're responding to one another. It's very interactive. And I think having these communities of support, these safe spaces for people where maybe they don't want to go on Facebook and blabber about their health to acquaintances from high school, they can go to an app and say whatever they want to say without judgment, without their aunts and their cousins and everybody and their brother seeing and reading their personal life and be able to get advice from their peers.

Natalie Hayden

And now these apps, Oshi, Gali, IBD Health Line, they are bringing on physicians and dieticians so you actually can connect with medical people that can give you medical advice. It's really awesome. I think one of the hard things when you become a veteran patient is I don't really feel the need and remission of almost five years to go on an app and document how am I feeling today. I think that it becomes kind of annoying in a way to feel like it's an extra homework assignment on top of all my advocacy work to think, "How am I monitoring my health today?" And all these apps do that. But when you are new to the game and you're newly diagnosed and you're trying to track how you've been feeling, it's very easy to go to your physician and be like, "I think I had three abdominal pain situations the last month."

Natalie Hayden

Do you have that all trended, trapped out in a chart? You can just actually send it to your physician and they have all of that information right at their fingertips, which is so useful because I think as chronic illness patients, we tend to downplay the severity of our symptoms. But in the moment when we're struggling or it's fresh in our minds, we tell it like it is on the app. So those apps are a great conduit to really show the truth behind what you're dealing with and I think also, you're not going to downplay things to a physician because you just want everything to be hunky-dory. You don't want to go in for a colonoscopy. You don't want an endoscopy. You don't want to deal with any of the testing because the test too, I think, hopefully in the future we can do something better for colonoscopy prep.

Natalie Hayden

I know there are some things on the market, but unfortunately, any GI will tell you this, many of them, you still have to drink something else in addition when you have IBD or there's ways to do colonoscopies when you don't have IBD to make it very simplistic at home. Those aren't options for us. So I think the scoping procedures and the prep for those procedures, the barium you have to drink for a CT scan, I'm hoping that in the future, there's better ways to get around all of those things. Because for any IBD patient, getting an MRE, a CT scan, colonoscopy, dealing with those perhaps no matter how many years you've had it... I've been doing colonoscopies now for 15 years, I get them annually. Every single time, I end up crying. Every single time, I'm vomiting on the floor. Every single time is a horrific experience for me.

Natalie Hayden

So I think if you could somehow improve that experience for patients too, that'd be great. But the apps, that's a great way too that has really helped because people can go on these apps and say, "I'm starting a colonoscopy prep, which one is your favorite? Which do you think is the easiest? Which have you had the best success with? Which gave you the cleanest scope with the less amount of drink?" And people have these conversations. So I think that those apps are just phenomenal and I'm so excited for them and the communication they've created for the community.

Sacha Heppell

And it seems, we're just scratching the surface now about how digital technologies can really make a difference and with that, going to Robert, like looking at delivery systems and what could it look like to actually have delivery systems get to that level of effectiveness?

Natalie Hayden

That'd be phenomenal. Just the thought of being able to swallow a pill and receive your biologic is probably one of the most exciting things I've heard as a patient since being diagnosed.

Sacha Heppell

So on that note, like there anything that we don't see now that is in store for the future of IBD treatment?

Natalie Hayden

I think hindsight is 20/20, of course, but as a patient, I've seen so much change and improvement in research and therapies and outreach and just the community in the past 15 years. In 2019, the month I had my daughter, the IBD Parenthood Project was launched by the AGA, which is an awesome resource, the gold standard for taking away all the gray area for people that are family planning, having babies, being mothers and none of this was created prior to 2019. So we are just breaking the surface right now. So my hope is that we're going to continue creating resources and communities of support to show people, "You know what? I have this illness, but I don't have to face it alone." And there are millions of people just like me with the same thoughts, same worries, same concerns, same experiences and same uplifting emotions too.

Natalie Hayden

Oftentimes, I tell people, especially that are newly diagnosed, I say, "If you want to say, "Woe is me" and lay on the couch and think, "My life is over. I have Crohn's disease." You can certainly make that happen with this disease. If you want to stand up and say, "I'm not going to let this disease rule my life. I'm still going to achieve everything I aspire to." You can do that as well. So really you can be in the driver's seat. At times, you're going to have to be in the passenger seat when this disease takes control. But for the most part, if you can get things well managed and you don't try to be a hero and you don't try to say, "I'm going to heal my gut on my own," when so many of us don't have that luxury and need to depend on medical therapies and that is not a failure by any means."

Natalie Hayden

And I think that that's also something many people struggle with is everybody and their brother on Instagram is saying, "Oh, I heal my gut with this drink," or "I just don't eat gluten, sugar, dairy," and they list five different food groups, is that how you really want to live your life? And is that giving you a quality of life? So it's so much to consider. And I think that people feel a lot of pressure from society to eat clean, be clean, not need medicine and that's a real struggle for our community because the majority of patients do need medication or else your disease is going to continue to progress and it's going to continue to rule your life.

Sacha Heppell

When I Google you and I look at the online reach you have, the impact that you've made for patients in similar better or worse situations, you bring so much hope.

Natalie Hayden

Thank you so much. I truly am passionate about this, which I'm sure you can tell. It is my life's work ever since I left the news business in 2014. Honestly, I get no childcare help and every single day that my kids take a nap, I am working on my advocacy. That's what I do day in and day out. My husband was actually surprised because he's known I do this, but when he worked from home and he's seen me on calls every single day, I mean, just Friday, I was actually on the phone with a random girl who was just diagnosed from New York, on the phone with her for an hour and there's so much behind the scenes advocacy work that goes out from the bottom of my heart, just to offer support and show people. She was crying. I started crying because people don't realize that when you're an advocate, you're not just helping people, they're helping you too, because you're learning just as much from them.

Natalie Hayden

And while it can be difficult to kind of go back in time and relive those difficult emotions of diagnosis and starting a biologic and all those things, it also shows you how far you've come and you can be a source of so much hope for people that are struggling to get out of bed in the morning, because they don't know how they're going to take on the day with their new disease. So I just find so much, it really does my heart good. I get teary eyed just thinking about the messages I get from people whose lives I've been able to touch in some way. And I think that I'm just starting and I'm excited to see what the future holds.

Sacha Heppell

Yeah. And I think it's time for pharmaceutical companies, digital health industry to catch up to where you are in providing that support.

Natalie Hayden

So many of them are really starting to do a great job too. Janssen in particular, they have IBD Social Circle, which includes, I believe, 22 of us patient advocates that are fairly well-known in the community and we do Facebook lives and Twitter chats and we convene at the Crohn's and Colitis Congress. We were just in Austin, Texas in January, or we go to DDW in San Diego and we're getting to be on the brink of research, sitting next to the top physicians in the world. And I think that that really makes a patient feel equal and it lets us have a voice in the process. So doing things like that is so amazing.

Natalie Hayden

I've been on Humira for almost 12 years now next week. And AbbVie does phenomenal work taking the patient voice and not talking about their drug, but talking with my husband about, "What's it like being a caregiver? During IBD Awareness Week, what's it like taking care of your girlfriend and then your wife when she's pregnant with IBD?" And getting that insight and just talking with me about things with their commercials before they air and say, "Natalie, how does this resonate with the community?" And I can give my advice. So I think pharmaceutical companies are moving in the right direction and it's just going to keep getting better.

Sacha Heppell

Yeah. And I think we're going to see more of that and more partnerships happening with digital health companies to really start, yeah, bringing this to the place that we talked about, the ideal situation for patients that are dealing with this, and I'm inspired by your vulnerability and assertion to that, no matter what the circumstances, you're going to live a powerful life, and you're going to follow your dreams and that's what I'm taking away from this conversation. Robert, was there anything else for you?

Robert Niichel

I think we're good. Appreciate your time today on everything with this, Natalie. And again, I'm so impressed how your mission really affects people beyond the Crohn's and really the kind of bigger picture, live a balanced life, don't let anything get you down, follow your dreams and that's so important for not only Crohn's patients, but all the lives that you touch through what you're doing. So congratulations.

Sacha Heppell

How can people reach you and stay connected to your blog?

Natalie Hayden

Sure. My blog is lightscameracrohns.com. I share fresh articles every Monday morning at 7:00 AM Central Time. If you have a story idea or just a topic or if you want to be a guest writer, you can always email me and my email is right on the website, or you can also connect with me on social media. I am always on Instagram, Twitter, and I have two Facebook pages, but feel free to really connect on Instagram, that's really the bread and butter for the patient community and that is @natalieann, A, N, N, Hayden, H, A, Y, D, E, N. And feel free to direct message me. I'd love to connect with you. I'd love to share your story and it's just incredible what the IBD family can do when we all work together.

Sacha Heppell

Awesome. Thank you so much, Natalie.

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The perspectives of digital health thought leaders today and an inquiry into digital technologies of tomorrow.

 

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