Julianne was having the typical college experience - going to classes, hanging out with friends, and getting ready for graduate school in Hawaii. Until her life was changed forever with a diagnosis of chronic inflammatory bowel disease (IBD). Then she met NYU Langone's Dr. Jordan Axelrad, who was diagnosed with the same condition at a young age. Together, they are inspiring others to speak up about IBD.
Julianne was having the typical college experience - going to classes, hanging out with friends, and getting ready for graduate school in Hawaii. Until her life was changed forever with a diagnosis of chronic inflammatory bowel disease (IBD). Then she met NYU Langone's Dr. Jordan Axelrad, who was diagnosed with the same condition at a young age. Together, they are inspiring others to speak up about IBD.
Vital Signs - Season 2
From Sirius XM and NYU Langone Health
TITLE: No One Can Help Me If I Don't Tell Them
DESCRIPTION: Julianne was having the typical college experience - going to classes, hanging out with friends, and getting ready for graduate school in Hawaii. Until her life was changed forever with a diagnosis of chronic inflammatory bowel disease (IBD). Then she met NYU Langone's Dr. Jordan Axelrad, who was diagnosed with the same condition at a young age. Together, they are inspiring others to speak up about IBD.
PARTICIPANTS:
Jordan Axelrad, MD
Julianne
Rose Reid
Julianne: About four years ago, I was finishing up my junior year of college and I started experiencing some GI symptoms. I've had the occasional stomach ache in the past. So I kind of wrote off as, okay, it's just another stomach bug, I’ll keep an eye on it… see what happens and go from there. But then those symptoms started to progressively get a little bit worse. And just kind of always having to think about where the bathrooms are, you know, pick the seat in the classroom that's closest to the door so you can, you know, sneak out without making a big deal about it. I was experiencing a lot of blood, a ton of nausea, so I wasn't really able to eat for a while there. And at the same time, I didn't want to talk about it to anyone. I kind of realized that no one can help me, if I don't tell them that I need help. I'm Julianne and I'm a patient of Dr. Axelrad’s.
Narrator: Julianne’s symptoms were scary, but not uncommon for someone living with inflammatory bowel disease. Someone like Dr. Jordan Axelrad.
Dr. Jordan Axelrad: I don't think I necessarily feel that some of my youth was stolen, but I do wonder how much more I could have done had I not had to waste so much time being sick. I'm Dr. Jordan Axelrad. I am an IBD specialist here at NYU Langone Health, and I am both a clinician and a researcher in inflammatory bowel diseases.
Narrator: Around three million people in the U.S. live with some form of inflammatory bowel disease, or IBD. This term refers to any disorder that involves chronic inflammation of the digestive tract, like Crohn's disease and ulcerative colitis, which are by far the most common. Despite its prevalence, two people’s experiences with IBD are rarely the same - which can make it an incredibly challenging disease to manage, both for the patient and the person trying to treat them.
Dr. Axelrad: In inflammatory bowel disease, it's not just one plus two equals three. It’s much more complicated. Yesterday, for example, I saw 15 patients. For those who I'm starting on medical therapy, I have no idea who's going to respond to what drug.
Narrator: Still, many find comfort in having a doctor who has been there, too.
Dr. Axelrad: I know what it's like to have to lose quality of life and feel like you're embarrassed at your job or with your friends.
Julianne: knowing that he kind of has that personal experience and can kind of help guide my journey and direct me forward - that was huge.
Narrator: From SiriusXM and NYU Langone Health, this is Vital Signs, where medicine is made personal. I’m your host, Rose Reid.
Dr. Axelrad: When you're otherwise young and healthy and 19 years old, you don't necessarily pay attention to what's going on with your body.
Narrator: When he was a sophomore in college at Tufts University, Dr. Jordan Axelrad’s body started begging for attention.
Dr. Axelrad: I was planning my whole day around how much time I had to spend in the bathroom. And I was losing weight, despite what I felt like I was eating a ton of food. And then increasingly that became associated with lots and lots of abdominal pain, lots of belly pain to the point where I was having to walk out of classrooms or the library, because the pain was so significant. I would wake up in the morning and oftentimes have to spend several hours in the bathroom, you know, diarrhea. Diarrhea throughout the day as well. And obviously when you're 19 years old, that can be incredibly distressing and interfere with your entire life. And it definitely did. I specifically remember before my diagnosis going out with my friends on a Friday night in Boston and actually having an accident. That distinctly stands out for me, because you don't want to be 19 year olds and having accidents. So eventually I realized that I really had to do something about this.
Narrator: Before these inexplicable GI symptoms appeared out of nowhere and began to take over his life, Dr. Axelrad had been a pretty healthy kid. After a few months of increasingly severe episodes, he went to see a specialist.
Dr. Axelrad: Like most people who are young and otherwise healthy, I was told my symptoms were probably irritable bowel syndrome, IBS, which is a non-inflammatory condition of the GI tract which can sometimes mimic some of these symptoms of diarrhea and belly pain. And with focusing on IBS, I did not get better. And in fact, I got worse.
Narrator: He underwent a colonoscopy, which is a common exam where a long, flexible camera is used to detect changes or abnormalities in the colon or rectum. He was initially diagnosed with ulcerative colitis, a type of IBD that causes inflammation and ulcers, which are sores in the digestive tract.
Dr. Axelrad: I was given a type of medication called mesalamine, which is used for mild to moderate ulcerative colitis. And at that point right after my diagnosis, I felt great. You know, the mesalamine worked and I went about my life. And then as I got sicker, moving into college and medical school, and underwent further evaluations, my diagnosis had changed.
Narrator: It’s not unusual for people with IBD to float between diagnoses. In medical school, Dr. Axelrad began treatment for Crohn's disease - a condition where inflammation leads to abdominal pain, severe diarrhea, fatigue, and weight loss. He started on one medication for a few years, then tried another, and then yet another. This kind of jumping around to find the right drug is also a hallmark of IBD. All of these different treatments and their side effects, along with the symptoms themselves, took a toll.
Dr. Axelrad: I don't think I necessarily feel that some of my youth was stolen, but I do wonder how much more I could have done had I not had to waste so much time being sick. I would say emotionally, it didn't hit me actually until I was a resident. I remember experiencing some symptoms that many patients with inflammatory bowel disease experience, which is arthritis and sort of swelling of some joints. And around this time I was also losing weight, which I attributed to just being an overworked medical resident, working 80 hours a week, not sleeping, hardly eating and taking care of lots of patients in New York City. And during this time I noticed that some of my joints started looking more swollen, and it was becoming increasingly more difficult for me to take the stairs at work. And so it wasn't until I realized that I was actually having difficulty even running towards codes in the hospital, that I started to really take the emotional toll that like, I have to take this more seriously. You know, if I can't take care of my own patients, if I can invest the time in my career choice, then you know, what am I doing? I can't just focus on my work. I can't just focus on my job. I have to take care of myself as well.
Narrator: Dr. Axelrad and his doctors threw everything but the kitchen sink at his IBD. He tried immunosuppressants, infusions, and injections. It took a few years, and a lot of trial and error, but finally, as he completed his residency, Dr. Axelrad started to experience some stability with his disease.
Dr. Axelrad: I finally started feeling better. But it was obviously a huge struggle to get me to that place. And even today, I just had a colonoscopy in December by Dr. Sophie Balzora, who's a gastroenterologist here at NYU Langone as well. And even on this higher dose of my fourth medication that I've been on, there's still some active disease left. So even though I feel good, there's still some disease left. And so it just goes to show how complex this can really be.
Narrator: Whether because of this complexity - or in spite of it - Dr. Axelrad was drawn to treating patients with IBD. But navigating how or when or if to share his story is tricky.
Dr. Axelrad: Oftentimes I think about, do I want to raise my experiences - because I also don't want to take away from what a patient is experiencing, right? I don't want to sort of detract or minimize that. From my perspective, having these experiences has given me a much broader ability to connect with patients. And at the same time, it also gives me the ability to put my foot down, to allow for more patient individual empowerment about their disease. So for example, a lot of times patients may come in and just say, like, I'm so tired of this. I can't do this anymore. It may be even the opinion of “you don't know what it's like”, and I can actually say yes, I do know what it's like, and here's the steps that you can take to get better. And of course that doesn't always work because everyone processes their emotions a little bit differently, but it, at least it gives me a leg to stand on to be sort of in more of a partnership with a patient, rather than standing across the room in a white coat dictating the plan.
Narrator: And the plan is sometimes complicated.
Dr. Axelrad: Inflammatory bowel disease is extremely difficult to treat because it's not just one pathway. And so when I give a talk to patients about inflammatory bowel disease, I always show a slide, a PowerPoint slide, and it is just a picture of the gut sort of lining and with all the immune cells that are involved. And it is crazy looking, it looks like a Jackson Pollock. I mean, there's just so many things involved in the disease pathogenesis that you finally grasp why one medication may not work.
Narrator: Inflammatory bowel disease is an immune-mediated condition. This means a person’s immune system is overreacting. In this case, within the gastrointestinal tract. Every patient’s immune system is so different, and so diverse, that IBD often presents with a wide range of symptoms. It can make Crohn’s and ulcerative colitis incredibly frustrating to control.
Dr. Axelrad: In inflammatory bowel disease, it's not just one plus two equals three. It’s much more complicated. And so if you block one pathway, the disease can get smart and just sort of shuffle to another pathway and up-regulate another inflammatory pathway. And that's part of the challenge. Yesterday, for example, I saw 15 patients. For those who I'm starting on medical therapy. I have no idea who's going to respond to what drug. There's no way I can look at a patient and say, I know if I give you Remicade, for example, or Infliximab, that this is the drug that's going to work. And so we still have to go through this sort of trial and error period where we try drugs and patients may get sicker during that time, if it doesn't work and may have adverse outcomes. And that that's part of the trouble is that the disease is not just mediated by one pathway, one molecule. It’s complex.
Dr. Axelrad: And so a lot of my frustration is trying to A: figure out what drugs are going to work for a patient and then B: optimize that to get them to their healthiest. And that's what I struggled with a lot. Unfortunately, for a lot of patients who aren't familiar with biologics, or, you know, the field of immunology, it's hard to understand why if you’re taking a drug, it's not working. Right? If you take insulin, yes, it drops your glucose level. So why, if I'm taking Infliximab, Remicade, am I not getting better? And oftentimes when that happens, patients may start to lose confidence in you as a provider. You know, you chose a drug, that's not going to work for me.
Narrator: Some of the drugs people take to try to control their IBD can cause other, potentially more serious problems.
Dr. Axelrad: The primary thing is to make a patient feel better safely. And there are definitely times where you want to do everything you can to help a patient stay out of the hospital or avoid a major surgery or just to feel better. But that has to be tempered with the safety of these agents So we keep talking about them, but they’re immune suppressing. They increase risk of infections. They may increase the risk of certain cancers. And that's really important to balance with the risks of uncontrolled disease and feeling better. So that's a risk balance analysis that has to occur with every patient. And it's different for every patient.
Narrator: People who live with inflammatory bowel disease also typically try to make dietary changes or adjustments to avoid symptoms. It’s not always effective, and like with the drugs Dr. Axelrad prescribes, it can be difficult to predict which nutritional approach will work for each patient, if any works at all. This can be confusing for some patients, who presume a digestive disease must somehow be related to what they eat. But again, IBD is immune-mediated, not dietary-mediated. And since IBD is so strongly tied to the immune system, physicians like Dr. Axelrad may soon have even more tools for treating it.
Dr. Axelrad: We are now in the age of immune therapies where we've finally achieved the ability to harness our own immune systems for our benefit. And so I would say that there's definitely been a sea change over the past couple of decades, and it will continue, uh, in terms of harnessing our own bodies to manage our own chronic diseases. And in terms of understanding how our immune system works to sort of exploit in a way to, to treat, that's something that's really exciting and that we're just sort of scratching the surface of.
Narrator: Despite new drugs and therapies emerging to treat IBD, patients can still spend months and years of their lives trying - and failing - to manage their disease. The typical age of onset for IBD is between 15 and 35 years old, which means people are relatively young when they’re diagnosed. It’s not an ideal time to have your life upended by your bowels.
Julianne: I'm Julianne and I'm a patient of Dr. Axelrad’s. So about four years ago, I was finishing up my junior year of college and I started experiencing some GI symptoms. And I've had the occasional stomach ache in the past, so I kind of wrote off as, okay, it's just another stomach bug and I’ll see what happens and go from there. But then those symptoms started to progressively get a little bit worse. It was never super bad, but it was when I started seeing blood that I ended up reaching out to my primary doctor. Ran a couple tests and she ultimately said, you should go see a gastroenterologist for this.
Narrator: Julianne went to see a local specialist close to home in New Jersey, and after a colonoscopy, was diagnosed with ulcerative colitis. She now had a name for what was happening, and she was given drugs to try to treat it. Neither helped much.
Julianne: I was pretty healthy. I was always exercising. And I'm told now I have this chronic illness. We don't really know how it started. There's no cure for it. You're going to have to be on medication, probably your whole life. It's kind of a lot to wrap your head around. Maybe a month or so into senior year things start kind of going downhill. The frequency of needing to use a bathroom dramatically increased. I remember my apartment at the time was maybe not even a quarter mile to one of my classes. And to get to class, I would have to map out two separate buildings that would have bathrooms and, you know, shuffle along to one, hurry up, get to the next bathroom and then make it to class. And just kind of always having to think about where the bathrooms are. You know, pick the seat in the classroom that's closest to the door so you can, you know, sneak out without making a big deal about it. It was hard for me to sleep because pretty much like clockwork on the hour, I was up with pain and needing a bathroom.
Narrator: Julianne was exhausted. IBD was starting to take over her body, and her life.
Julianne: So I was always just tired and, you know, trying to get through school and all of your classes, workload and projects. Kind of just showing up half asleep to things. And at the same time, I didn't want to talk about it to anyone. So no one knew. They couldn't outwardly see that I was sick or that I was dealing with these sorts of things. And it's, you know, an invisible illness of sorts. So, you know, I always felt bad or flaky if I had to cancel something, or if I missed a class, or if I handed in an assignment that was half done. It’s a lot physically and mentally and it’s kind of a lot to grapple with as a younger person, as a student.
Narrator: She didn’t want to make a big deal out of her IBD with friends or professors - but what was happening to Julianne was a big deal. She went for counseling to try to cope.
Julianne:Talking to therapists who kind of explain how after a diagnosis, you go through this kind of period of acceptance of the condition and it's part of you, you can't really run from it, but it doesn't have to define your whole life. We talk about the idea of grieving who you used to be. Grieving the person you thought you would become. And just kind of trying to find peace in that presence and just kind of taking the days as they come, still staying hopeful and everything like that.
Narrator: Fall break rolled around, and Julianne went home to visit her family. She also went back to the gastroenterologist, who put her on steroids to try to address her worsening symptoms.
Julianne: And that actually helped a lot, that pretty much relieved my GI symptoms. I was super happy. I, you know, started getting back into my strength training and cross-training, and I was feeling super strong and just so thankful. I was kind of at my strongest. I was back in, you know, doing sports, when I started to notice a stomach ache. Little did I know that that was all kind of gonna flip on its head.
Narrator: Julianne was in the middle of her last semester of college. She thought maybe she was anxious about school projects, and that maybe stress was making her IBD flare. Or, that maybe it was all in her head, which was also making her IBD flare. Soon, it became clear that it was neither. The steroids Julianne was taking can help IBD patients find relief, but they’re more of a temporary solution.
Julianne: Within about a week, I was dealing with a bunch of symptoms again. It came on much faster, kind of without any warning. I was experiencing a lot of blood, a ton of nausea, so I wasn't really able to eat for a while there just trying to take nutritional drinks.
Narrator: Julianne lost a lot of weight during this flare up, as many IBD patients do. The goal was just to get through each day, but even that became difficult, if not impossible.
Julianne: I wasn't communicating this with anyone, so no one knew besides, you know, my closest friends and family. It was good to have that support, but you know, my peers in class, my professors, I would just say, oh, I have to go to the doctor or, oh, I have to miss class for this. Here's an assignment that I only did halfway. Don't hate me for that, but I'm not going to tell you why I didn't finish it. I kind of realized that no one can help me, if I don't tell them that I need help.
Narrator: Julianne made it through the end of the semester.
Julianne: By some miracle I finished. My goal now is just spend the summer resting, letting my body try to get back to normal. I had planned to go to graduate school later that summer. It was going to be a ways away. I was going to the University of Hawaii. I get out there, I'm out there for about four weeks and in a place where I was planning on going surfing and hiking every day. I was spending every day in bed. The symptoms had gotten worse again. So I made the decision to move back home.
Narrator: Over the next year, Julianne worked hard to get her IBD controlled. She tried new medications, suppositories, and major lifestyle changes. The disease never really went away. But it wasn’t getting worse. She continued to deal with constant fatigue, as well as bouts of anemia. Tests showed her inflammation was creeping up again, which was troubling. All she wanted was to go back to graduate school in Hawaii.
Julianne: But I wasn't going to do that unless I had a good plan on how I was going to manage the colitis.
Narrator: A friend suggested she check out NYU Langone Health, because they had a center devoted to managing inflammatory bowel disease.
Julianne: I went on to NYU's website to book an appointment. And at this point I thought that any doctor at NYU would be good. However, it was kind of by this serendipity that one of the first appointments they had was with Dr. Axelrad. And I went on, and I looked at his bio and seeing that he was living with IBD. I thought this was such a great opportunity to work with someone who truly could understand what I was going through.
Dr. Axelrad: Julianne is a very challenging patient. Looking at her, you'd never know that she was so sick, which speaks to the challenges in IBD generally, is that when you're dealing with otherwise younger, healthier, people, that they can have sort of a high tolerance for looking well, but actually being quite sick. So when she walked in my office for the first time, I thought, oh, this doesn't look so bad. And then, you know, looked at more of her records, got labs, eventually did a repeat scope and recognizing that things were quite severe.
Narrator: Another challenge specific to Julianne’s case was that she had returned to graduate school, across the country, across an ocean, in Hawaii. Dr. Axelrad was constantly trying to adjust her therapies from a distance so that she could achieve some level of remission, and maintain a higher quality of life.
Dr. Axelrad: I mean, the challenge of someone like Julianne is also that there's lots of patients in college and even high school that are struggling with this and are trying to live their lives and, you know, date and make friends and have a good time, and then are also managing a chronic, life impacting disease.
Narrator: In this, and other ways, Julianne’s case was familiar to Dr. Axelrad.
Dr. Axelrad: What reminded me of myself when taking care of Julianne was the minimization of her symptoms. Because when I did the procedures on Juliane, it was severe. I mean, it was a war zone. And I knew that she was suffering and I knew that she was minimizing the way she was feeling just to simply get through her day, to be a regular college student and to go to school and to have fun with her friends. And, um, a lot of that minimization felt very similar. And what was different, however, I think for me was that there were times where I was not compliant with my own medications. So she was willing to do whatever I or whatever we suggested or whatever we came up with as a treatment, Julianne was highly compliant.
Narrator: Dr. Axelrad’s goal with most patients is to try to avoid surgery. For Julianne, he decided to try infusions of a biologic medication that would tamp down the inflammation in her gut. There are risks of taking biologics. For instance, they can weaken the immune system, which increases the risk of infection. But, soon, Julianne started to see a change.
Julianne: The good days were outnumbering the bad and I was really happy about it. So in my mind, things were great. There was still the occasional GI episode, these intense bloating and aching episodes, but they only really lasted 24 hours. So it would kind of just push through and keep an eye on it. But in terms of disease activity and things like that, the infusions were helping. And it wasn't this, you know, immediate success, but there was definitely noticeable, subtle successes. As far as approaching grad school, it was this management of energy, making sure I really got to live fully while I was out there. But also knowing when I needed to stay home and rest and just kind of finding that balance and making it work. Because being out there and doing that was better than being home on the couch.
Narrator: Julianne was developing confidence in herself to be able to manage her IBD - and also, in her doctors.
Julianne: So was I waiting for it to come back? I kind of always have this slight fear or this slight anxiety - When's the day? but at the same time, I really try hard not to think like that. And you know, at this point in time, it very rarely crosses my mind. Also having this sense of faith or trust in the doctors at NYU. We’re figuring this out. If something else happens, he's gonna figure it out. I just had this kind of safety blanket. And I think that contributed to that minimized fear.
Narrator: People who live with IBD often struggle alone, embarrassed by their symptoms and reluctant to reach out for help. As both Dr. Axelrad and Julianne can attest, it can feel like an invisible disease, despite having extremely visible symptoms that patients try exhaustively to hide. Dr. Axelrad is also trying to remove stigma for those suffering, and make it more acceptable to talk about IBD so they can get the help they need.
Dr. Axelrad: I think for younger people who are experiencing inflammatory bowel disease, one of the things that I'm able to offer personally is that I am also a younger person with inflammatory bowel disease. And I've been a young person with inflammatory bowel disease. It's important that inflammatory bowel disease, that chronic diseases have a face and also context. And so if someone is listening who is experiencing similar things, there are not only other folks that are living and experiencing this, but there are also providers who can help take care of this that are living and experiencing this. And that responsibility is probably the easiest responsibility I have because, this is something that I live with every day and I've lived with for many, many, many years. And so I feel actually quite comfortable talking about it. And I want that to be a comfort to a lot of people out there who are really struggling and suffering.
Narrator: For now, Julianne is not one of those people who is struggling or suffering, In fact - she might even be thriving.
Julianne: I feel so much better. I feel extremely close to where I was before all of this. I've gotten back into running. I've gotten back into surfing. I think one thing for me that I'm really looking forward to is I fell in love with triathlon before my diagnosis. And then that was something that was kind of taken away from me. And now I'm training for kinda my first triathlon in four years. Even being able to put my head in that space and visualize waking up and driving to the race site. I didn't let myself think like that in the past. And now I'm at the point where I could think about that and feel confident that, knock on wood, I won't have to cancel that race.
Narrator: Vital Signs is a co-production of NYU Langone Health and SiriusXM. The podcast is produced by Jim Bilodeau, Julie Kanfer, and Keith King, with sound design by Jim Bilodeau and writing from Julie Kanfer. SiriusXM’s executive producer is Beth Ameen, in partnership with Allison Clair and Jim Mandler of NYU Langone Health. Don’t miss a single episode of Vital Signs and subscribe for free wherever you listen to podcasts. To hear more from the world-renowned doctors at NYU Langone Health, tune into Doctor Radio on SiriusXM channel 110. Or listen anytime on the SXM app. To get in touch with our production team, email VitalSigns@siriusxm.com. For the Vital Signs podcast, I’m Rose Reid. Join us next time as we bring you stories of medicine made personal.