Running Against the Odds

Diagnosed with severe and debilitating Crohn’s disease, Catherine Rodgers, a child life specialist at Kravis Children’s Hospital, drew inspiration from her patients—and entered the NYC Marathon to support them. 

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Transcript

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Stephen Calabria: [00:00:00] From the Mount Sinai Health System in New York City, this is Road to Resilience, a podcast about facing adversity, a podcast about facing adversity. I'm your host, Stephen Calabria, Mount Sinai's Director of Podcasting.

On this episode, we welcome Catherine Rodgers, a radiology child life specialist at Mount Sinai's Kravis Children's Hospital. Following a series of mysterious illnesses, Catherine was diagnosed with Crohn's disease in 2020.

This helped guide a career in pediatric medicine. It was there she decided to run the New York City Marathon to support IBD kids, that raised money to further the research and treatment for irritable bowel disorder, also known as IBD.

Catherine completed the New York City Marathon on Sunday, November 2nd, and her story is a model of perseverance, dedication, and service to her community. We're honored to welcome Catherine Rodgers to the show.

Catherine Rodgers, welcome to Road to Resilience. 

Catherine Rodgers: [00:01:00] Thank you so much for having me. 

Stephen Calabria: You are a child life specialist at Mount Sinai Kravis Children's Hospital, is that right? 

Catherine Rodgers: Yes, that's correct. I help prepare our pediatric patients prior to diagnostic scans and procedures in radiology, I then help create a coping plan and I support them and their families through that experience. 

Stephen Calabria: A coping plan, like what does that usually mean?

Catherine Rodgers: Could be distraction, deep breathing.

Non-pharmacological pain management. It varies depending on the age of the patient and what scan they're getting or procedure. But those are some of the options that we can do. 

Stephen Calabria: Is pet therapy also a part of that? 

Catherine Rodgers: We do have three wonderful facility dogs, Icy, Summer and Muffin. So yes, they're a huge part of our program and we love them.

Stephen Calabria: If you're listening and want to hear more about the pet therapy program, which is called Paws and Play, check out a previous episode of this show. So you had always wanted to go into medicine, is that right? 

Catherine Rodgers: I always wanted to work with [00:02:00] kids. I think my mom was a pediatric nurse, so I grew up with stories of the medical world and was always really interested in it.

But nursing wasn't for me, being a doctor wasn't for me. And so I worked at a summer camp for kids with chronic illnesses in California called the Peanut Turtle, and that's when I heard about Child Life and knew it combined everything.

I was really passionate and interested and then just went from there pursuing a career in child life.

Stephen Calabria: But you had a physical discomfort for years that you didn't really know what it was, you couldn't identify it. When did you realize there was a problem? 

Catherine Rodgers: My senior year of college, I started getting ulcers, lining my throat and that would happen every six to eight weeks. I would have a fever and be down for the count for about a week, and I saw a couple different doctors, mainly ENTs.

And after I graduated college, I got my tonsils taken out, thinking that it was reoccurring virus or strep and the only way to make it go [00:03:00] away was with that procedure. I then moved to Baltimore to start my master's degree at Towson University and continue getting sick for the next year.

And so obviously the tonsillectomy did not work. So it was August of 2020 in the height of the pandemic. I got an abscess and went misdiagnosed for a little while. Ended up back in Baltimore and called my parents and was. Taking a bath, trying to relieve some of the pain that I was experiencing.

And I remember calling my mom and crying and just thinking I had a tumor 'cause I had no idea how something could get so bad. And I drove myself to Johns Hopkins Hospital, their emergency department on a Friday night, which is a very hectic time to go. And from there I started getting on the track to get a diagnosis.

So it was there ultimately [00:04:00] in the summer of 2020 that you got your diagnosis? 

It's when I started the process. So I was in the hospital for five days and as probably a lot of people know, when you're treated as an adult in the pandemic, you were alone. So my parents could not be at bedside with me which was definitely extremely scary for them.

And. My mom, having been a pediatric nurse, actually reached out to a former classmate of hers that was now had her doctorate of nursing and was working in the GI department at Johns Hopkins. And after I got discharged, just emailed her a list of all my symptoms and what had happened in the hospital and.

Kind of just begged for help of something's wrong and we need an answer. And that's Sharon Dudley Brown, and I'm so indebted to her care. And she then started the diagnosis process. So I got an MRI enterography blood work, a stool sample, and then I had a colonoscopy on November 3rd, 2020, which is where I got my official [00:05:00] diagnosis of Crohn's disease.

Stephen Calabria: How did it feel to receive that diagnosis? 

Catherine Rodgers: I think after two years of symptoms and a surgery that did nothing, it was a. Relief. There is an answer. But then attached to that is a lot of fear of what does this mean for the future? How do I manage this? The abscess I have come back. So a lot of unknown and with unknown, there's a lot of fear, but I would also say there was relief that I could set out on a path to finally get healthy.

Stephen Calabria: For listeners who aren't familiar, what does a Crohn's diagnosis even entail? 

Catherine Rodgers: The diagnosis process, at least for me specifically, was an Mr. Enterography a colonoscopy, the blood work, everything like that. But Crohn's is inflammation. And it's can be anywhere from your mouth to your rectum.

It can it. Impact your eyes, it can impact your skin. So for me, my first symptoms were the ulcers, which was incredibly [00:06:00] rare from I learned after the fact. And then the abscess was also quite rare, but that is essentially what prompted me to get my diagnosis. But everyone presents differently. So how I present with my Crohn's disease can be extremely different from another individual.

Stephen Calabria: And who's most impacted typically? By Crohn's generally, 

Catherine Rodgers: The diagnosis age, from what I know is 15 to 30, but I don't know if that's changed since I got diagnosed, but from then I was in that prime age to be diagnosed with it. 

Stephen Calabria: So how did you, so how did you navigate the diagnosis? 

Catherine Rodgers: I leaned on my support system tenfold.

I think without them, I. I don't know what I would've done. My mom having been in the medical world and my dad did so much research to understand what was happening, but we asked a lot of questions, which is something I'd recommend anyone that's in the process of getting a diagnosis, whatever it [00:07:00] is, to write your questions down and really be educated on what's happening with your body.

So it was a lot of questions to Sharon and then it was also. I did get sick again and had to get a colorectal surgeon. At that time it was Dr. Sandy Fang, who again, I'm so indebted to. She held my hand through that whole process and she really taught me about what was happening to my body and.

Allowing me to better advocate for myself in different situations. So a lot of it was trial and error that first year of just riding the wave and going with the flow and figuring it out. 

Stephen Calabria: So what does a person's typical day-to-day look like if they have Crohn's? 

Catherine Rodgers: Now, that I think very varies so I can speak to myself that when I'm healthy.

There's no difference in my opinion, between me and someone who doesn't have Crohn's. I get an infusion every six weeks, but that's as much as I'm impacted when [00:08:00] I am, in a phase of maybe having a lot of surgeries to help with the abscesses I was experiencing. And I had a fistula track, that is a very different experience, and I think a lot of people with Crohn's can understand that when you're flaring, your life changes a little bit.

Maybe you're doing more pain management, you're having surgeries, you're trying out new medication. Again, it varies person to person, when I'm healthy, I'm just like anyone else. When I'm a little more sick, I slow my life down and I really prioritize my own comfort and just taking it day by day.

Stephen Calabria: I also imagine that now that you had some answers, the diagnosis allowed you to better plan out your day and just your general life. Would you say that's true? 

Catherine Rodgers: Yeah, for sure. 

Stephen Calabria: And you talked about your support system. What were your biggest areas of support? 

Catherine Rodgers: My family. So my mom, my dad, my sister Sarah, and my sister Emily were Lifelines.

I think I had to go through. Probably the first [00:09:00] three years of my diagnosis, doing infusions alone. Surgeries alone physically in the building because adults were not allowed to have a caregiver or like a support person with them due to the, to COVID. So I think in some ways it, it made me. Incredibly strong of like, how do I cope with this by myself not being able to hold anyone's hand while I'm in a lot of pain.

But it was through a phone that, when I was in the ED one night, my mom was doing deep breathing with me at two o'clock in the morning via FaceTime to help calm me down. And so my immediate family, but then I have a huge collection of cousins and aunts and uncles and best friends that have walked through.

Every single step with me and just provided me with the support and that I needed in those moments. 

Stephen Calabria: So circumstances worsened and then you were forwarded on to some new medical professionals, is that right? 

Catherine Rodgers: Kind of. I finished my graduate degree in [00:10:00] Baltimore and then my whole family lives in Manhattan, so that was a clear next step.

I was healthy at that point, so I transferred care to my. GI providers, Dr. Bruce Sands and, started doing my infusions here at Mount Sinai and was really healthy up until 2023, which is when my fistula tract got reinfected. And I then needed to have four surgeries with Dr. Ov over the course of October, 2023 to June of 2024.

Stephen Calabria: What did that lead to? 

Catherine Rodgers: It will lead to me being completely healthy right now. So that was wonderful. But I won't really glorify those months. They were definitely very challenging. I had a lot of chronic pain during that time, so I think that experience. I got really comfortable being uncomfortable in my body and working, as a child life specialist through that.

But I also think it made me [00:11:00] so incredibly grateful for when I'm feeling good and can move my body and how how lucky we are to be able to do that pain-free. So it gave me a very. Good perspective on life, but it was definitely incredibly challenging too. 

Stephen Calabria: And how does this diagnosis and what you've been through since the diagnosis impact the way you treat patients and the patients that you've chosen to focus on?

Catherine Rodgers: Yeah, so I, I think with radiology and, I've also done consults in the OR and my job is to prepare kids and their families for that experience. When you've had four surgeries at Mount Sinai and you've been in our emergency department and you spent the night here, you have a different perspective of every step of that process.

So I think it, when I, it comes to preparing kids, I really know the sensory experiences, but I also can empathize with the fear of the unknown that they might be experiencing. I've witnessed my own parents be [00:12:00] incredibly nervous and I. See that in caregivers too. And I just feel like it's educated me on the patient experience in a very personal way, but it's allowed me to advocate in a way that I'm really grateful for.

I think it's made me a much better clinician and it's given me a new perspective on the patient experience. 

Stephen Calabria: What do pediatric patients with Crohn's have in common with adults? 

Catherine Rodgers: A lot of the presentation can be the same. So there's, pediatric patients that, you can lose a lot of weight really fast from, not being able to absorb nutrition.

You can have fistula, tracts and abscesses. You can also might need a bowel resection. So the disease doesn't, from my understanding, doesn't present differently in peds and adults. It's just there's a whole slew of symptoms and it really is just so personal to that individual. [00:13:00] 

Stephen Calabria: Now while you were, after you started treating pediatric patients, you hit upon the idea of running a marathon.

Yeah. Why the New York City Marathon? Why marathons in general? 

Catherine Rodgers: I was an athlete my whole life. I swam from the age of five throughout my senior year of college. So I love being an athlete. I never liked to run. I, my dad was the marathoner in our family. And so I was one week post-op from my first of four surgeries and I was cheering on the 2023 New York City Marathon and again.

Waddling around definitely in a lot of pain. And I needed a goal. I needed something that was gonna be that bright light at the end of the tunnel that gave me motivation to move my body, even if it wasn't always the most comfortable. And I was watching all the Achilles runners and runners of every [00:14:00] age and every background running for different causes who had the most inspirational stories and.

I just thought, why not me? Why can't I do that? And so I made a goal then that in two years I would celebrate the five year anniversary of my diagnosis, raise money for IBD kids. And I got really lucky that my older sister, Emily, wanted to do it with me. And so we spent the next, as I continued to get more healthy, which each surgery I started running and doing the New York Road runners races to practice.

My dad having had been a marathoner multiple times, was our coach throughout the whole experience and. Got us up to, this past weekend, and actually it was at the expo that we were picking up our bibs on Saturday, where he surprised my sister and I with a bib for himself. And he actually ran it with us, which we didn't think was possible because he also had his own injury that he had been rehabbing [00:15:00] for the last year to be able to run with us.

I ended up getting to run the marathon with my sister and my dad, which was. The most unbelievable experience. 

Stephen Calabria: What does training look like for a marathon? 

What's the process? 

Catherine Rodgers: It's a lot. It's, for me, it was about like almost four months of running, four to five times a day. I was following like a training plan.

You're cross training, you're strength training. It takes up a lot of time, but. It. I loved feeling like an athlete again. I think I miss that so much from when I swam in college and just my entire childhood. So it felt really nice to be able to train again for something and have such a goal that was, based on how strong I was and, so it takes a while. It's a big commitment, that's for sure. 

Stephen Calabria: And where does the New York City Marathon stand on kind of the global marathon hierarchy? 

Catherine Rodgers: The New York City Marathon is one of the world majors. So if I'm not mistaken, there's six in total. And the New York is the [00:16:00] last one for the year.

It's. Tokyo, London, Boston, Berlin, Chicago, Sydney, and New York. So actually I think there's now seven with Sydney being added this year. So it's one of the world majors. But I've heard from a lot of people who have run a bunch of them. That is one of the most fun marathons. And that's because of the spectators.

Stephen Calabria: The spectators. New York has special spectators. 

Catherine Rodgers: Yeah, it's like a huge block party through all five boroughs. It was. The most insane experience. 

Stephen Calabria: So you completed the New York City Marathon this past Sunday. We're recording in early November. How was it, how did it feel? Did you cross the finish line? And if you did, how was it?

Catherine Rodgers: Yes, we crossed the finish line. Definitely painful at moments, but it was so fun. I was on such a. I was experiencing a level of joy that I feel like I haven't experienced in so long. It was, we had [00:17:00] our cousins, aunts, uncles, friends from other cities, my coworkers. We had so many people who came into the city to cheer for us and celebrate this milestone with us.

My sister and I raised over $13,000 for IBD kids, and I think it was such a celebration of overcoming adversity. The true power of having a support system and like a village that gets you through these moments. And they all showed up and it was it was so fun. I, it was painful, but I also like I said earlier, like I have a pretty high baseline of being comfortable with the uncomfortableness of my body.

I think the surgeries have proven that I can experience pain for long periods of time and be okay with it. And I just told myself that this is not as painful as any one of my seven surgeries. And so that was again, a helpful perspective to have and that any pain I was in would be temporary and to just enjoy the experience.

'cause two years ago there was no way I was running even a block. [00:18:00] So it was a huge milestone for sure. 

Stephen Calabria: I'm gonna insert this question right before that one. So tell us about IBD kids. It's the charity that you decided to raise money for through running the marathon, is that right? 

Catherine Rodgers: Yes, that's correct. IBD kids was started by Dr.

Keith Benko, I believe 18 years ago. It's one of the oldest charities of New York City Marathon again, if I'm not mistaken. And. They try to raise over a hundred thousand dollars, I believe every year that goes to the research for the different physicians that work at Mount Sinai to further the re treatments, whether that's, medication or surgical intervention.

So the money all goes to those new initiatives. And I think it's also important to note that, 40 years ago the med options for. Crohn's and ulcerative colitis were vastly different. It was steroids. And now we have biologics that don't have as many side effects. They're [00:19:00] extremely impactful and they do their job really well.

And even that, there's more biologics coming. You can do infusions, you can do at-home injections. There's even now a pill that you can take every day. So the medication has changed in a way that it's allowed. People with IBD to not have as many, maybe side effects from the meds compared to a steroid.

And then, you don't necessarily have to be tied to a hospital every six weeks which is, my current situation. But it's pretty easy seeing as I work at Mount Sinai. So I wouldn't say that's a big lift, but it's really cool to see just the progress. And even in the sur surgical interventions, I feel like have also started to change and just been really.

Really impactful for the quality of life of people with Crohn's and ulcerative colitis. 

Stephen Calabria: Now that you've finished the marathon, how do you think it impacts the way overcoming challenges and especially the challenges faced by the patients that you deal with? 

Catherine Rodgers: I was, emailing with Dr.

[00:20:00] Benoff of after the marathon of how grateful I was for this whole experience, and I, he and I both agreed that. I think training for the marathon and running it when you have a chronic illness it proves that you can be just as healthy as someone without a chronic illness and that you shouldn't put, limitations to what you can or cannot do.

And I think running the marathon and training and showing up for myself and being disciplined throughout that entire process just proved that. I can do hard things and so can everyone else who ran that and had, such inspiring stories. So I think the marathon just allowed me to also take back when I couldn't do things physically and was in a lot of pain and there was no chance I could run a marathon two years ago.

But to take that back and be like, no, I can do it. Like I can train and be healthy and I think that was just so helpful. Yeah, to feel like an athlete again. And the Crohn's is a part of me. It's a part of who I am, but it doesn't have to be a limiting [00:21:00] factor to what, myself or anyone else can do in this life.

Stephen Calabria: The pain, the diagnosis, the surgeries, would you take it all away? 

Catherine Rodgers: No, I think and that might sound crazy to some people, but I think when it comes to my. Diagnosis. It's made me such a better clinician. It's made me a, so much more grateful for my physical health, my, my mental health. It's given me a whole new perspective and obviously it comes with challenges of fear of the unknown and, what does it look like if I have to change my medication someday?

What does it look like if I get sick again? Obviously that is really scary, but it also makes you just so grateful for your current moment of being healthy and not limiting yourself. And I, yeah, I just think it's, and it's brought me so much closer to my friends and family and it's just, it's been a really good life lesson and, i'm really [00:22:00] excited to see how the treatment continues to change and grow over the years. And I'm a huge proponent of being part of research studies as a patient to helping, raise money for them. Because if it wasn't for those individuals that, were either GI doctors, colorectal surgeons, researchers, my quality of life would be a lot worse.

I think getting to raise money and be a part of those studies is a blessing and it's a privilege and. I just think I, I wouldn't change it. I think my life is incredibly beautiful with it. 

Stephen Calabria: What does your average person not know about Crohn's, specifically? How it impacts children? 

Catherine Rodgers: I think when it comes to Crohn's, there can be, I.

Maybe a stigma against, how it impacts your body and having to go to the bathroom and what that looks like. So I don't know if it's enough like a education thing or just more of a stigma that can come along with the [00:23:00] diagnosis. But I think the more that. Talked about and normalize, especially with the different surgeries that I've had and other people have had.

I think hopefully it helps people not feel as alone in the experience and that, just because a part of your body might have changed or you might just, doesn't mean that, doesn't like impact who you are as a person or make you less than or anything. So I think there's a, there can be a stigma around it, but I think it's hopefully changing and I hope, more kids can feel comfortable in their body and talking about the diagnosis and leaning on their support system.

'cause I think with education comes more support and empathy. 

Stephen Calabria: If a listener takes anything from this conversation both about Crohn's and just perseverance in general, what do you hope it would be? 

Catherine Rodgers: To not limit yourself. I think it's pretty easy to get diagnosed with a chronic illness and have a victim mentality and let that kind of completely [00:24:00] alter your life and what you feel like you're capable of.

And so I think my one hope is that anyone who listens to this, whether it's a chronic, they have a chronic illness, or just anything is. Is not to let that limit you and let it to be a motivator to continue doing really cool, amazing things that push you mentally and physically. But yeah, I hope people just take away to not limit themselves.

Stephen Calabria: That's it for my question was that's it for my questions. Was there anything else you wanted to say? 

Catherine Rodgers: No, thank you so much for having me. I really appreciate it. 

Stephen Calabria: Catherine Rogers, thank you so much for being on Road to Resilience.

Thanks again to Catherine Rogers for her time, and thanks again to Catherine Rogers for her time and expertise. That's it for this episode of Road to Resilience. If you enjoyed it, please rate review and subscribe to our podcast on your favorite podcast platform. Want to get in touch with the show or suggest an idea for a future episode?

Email us at [00:25:00] podcast@mountsinai.org. Road to Resilience is a production of the Mount Sinai Health System. It's produced by me, Steven Calabria, and our executive producer Lucille Lee. Lee from all of us here at Mount Sinai. Thanks for listening, and we'll catch you next time.

Catherine Rodgers: Alright, cool.