Patient Perspectives: Managing Crohn’s Disease
Butts & Guts continues our Patient Perspectives series with a focus on Crohn's Disease. Katie was living the typical, active college life when she began to experience some uncomfortable symptoms. Listen as she tells the story of her Crohn's diagnosis, coming to Cleveland Clinic and meeting Dr. Amy Lightner, and how she's managed this condition for the past several years.
Patient Perspectives: Managing Crohn’s Disease
Scott Steele: Butts & Guts, a Cleveland Clinic podcast exploring your digestive and surgical health from end to end.
Hi everybody, and welcome to another episode of Butts & Guts. I'm your host, Scott Steele, the Chairman of Colorectal Surgery here at the Cleveland Clinic in beautiful Cleveland, Ohio. Today is a special day because today we get an opportunity to hear from a patient, and what a patient's perspectives are in terms of managing Crohn’s Disease. Our expert for today is Dr. Amy Lightner, who is an Associate Professor of Colorectal Surgery here in Cleveland Clinic's Digestive Disease & Surgery Institute, as well as a member of our Department of Colorectal Surgery. Dr. Lightner is also an Associate Professor at Lerner Research Institute here, and is again a returning guest here at Butts & Guts. Amy, welcome so much to Butts & Guts.
Amy Lightner: Thank you. Thank you for having me.
Scott Steele: And we are extremely pleased to have the wonderful, awesome, and any other great adjective that we can have, Katie Neu, who is a patient of Dr. Lightner. It is her first time here on Butts & Guts, and she is going to give us the patient perspective, as I said, about living with and dealing with the treatment, both medical and surgical, for Crohn’s Disease. Katie, welcome to Butts & Guts.
Katie Neu: Thank you so much, Dr. Steele, and thank you for including all those adjectives and clarifiers. I appreciate that.
Scott Steele: Well, we're super happy to have you join us and we're super happy to hear your perspective on what can be a debilitating disease in many different ways that people may not even think about. And so excited to get in to a little bit of that.
But first, Amy, we'll turn it over to you. And for those who haven't listened to our back episodes, please go and do that. But for those who haven't, why don't you give us a little bit about your background? Where did you train and where are you from? How did it come to the point that you're here at the Cleveland Clinic?
Amy Lightner: I'm from San Diego. I went to undergrad at Stanford in Northern California and then did med school at Boston University in Boston, and then did my surgical training at UCLA, and then went to fellowship at Mayo Clinic in Rochester, Minnesota, and stayed on for a few years there. And then was recruited here to Cleveland Clinic to focus on inflammatory bowel disease, both on the patient side and on the research side. It's been great to join the team.
Scott Steele: We are absolutely pleased to have you here. It's been a wonderful coming up at a little over two years. And Katie, for you, give us a little bit of background about yourself. Where are you from? What do you do? And how did it come to the point that you came to the Cleveland Clinic?
Katie Neu: Yeah, absolutely. So, my name is Katie Neu. I'm a recently turned 27-year-old. My birthday was on September 29th, so just barely 27, holding on to that. I am from Detroit, Michigan, actually. So I'm not from Cleveland. A Michigander true and true. I will talk a little bit about how I got to ... a little bit of my story later about Cleveland Clinic, but I work in events currently for Central Michigan University. Fire up Chips! for any of those CMU Chippewa’s that are listening. Have my masters in higher education administration and a bachelor's in event management.
Scott Steele: Well, thank you so much for, number one, teaching me the fighting Chips kind of hooray spirit there. I didn't know that one.
Katie Neu: Fire it up.
Scott Steele: And thanks for joining us here on Butts & Guts. So, Dr. Lightner, let's just go back and just start for those who are maybe new to Butts & Guts and give us a little bit of an overview of Crohn’s Disease. What is this disease? Why are there people that present with so many different manifestations, and kind of on the spectrum of it? How common is it? Katie's pretty young, 27. Is that common? Give us a little bit of background about this disease.
Amy Lightner: Yeah, so Crohn's is a chronic inflammatory bowel disease. It affects any location along the gastrointestinal tract from mouth all the way down to anus. And there really still is no known cause. We don't know why Crohn’s Disease happens or what makes it worse, what makes it better. And unfortunately that means that there's no cure yet. So the treatments that we use really are to address symptoms. There's lots of different types of Crohn’s Disease and the way that we think about it is, we think about it by location. So whether Crohn’s Disease affects the small bowel versus the colon versus the perianal area or all of the above. And we think about it in terms of what the inflammation is like. So sometimes it's just regular inflammation that affects the bowel wall. Sometimes it creates these strictures or scarring in the bowel that can create obstructive symptoms.
And sometimes the inflammation goes all the way through the bowel wall and can create an abscess or what we call a fistula where two pieces of the intestine might communicate with one another. It's actually quite common, so over a million patients now in the United States alone and seems to be on the rise worldwide for unclear reasons. And like you said, Katie's 27, but that's actually the common demographic that we see it in, patients in their teens, twenties. So it definitely affects young patients and it's something that they have to live with throughout their entire life. So common and on the rise. We know that there are certain genes associated with Crohn's and there are certain patients that may be at increased predisposition because they have family members with Crohn's. But again, really no known cause yet. It affects young patients and patients are at higher risk perhaps if they're smokers, but a lot of risk factors still haven't been determined.
Scott Steele: You mentioned a few things there. Let's unpack that a little bit. So lots of different symptoms and how does somebody know if they have Crohn's?
Amy Lightner: Yeah, good question. A lot of the symptoms are pretty non-specific. So patients might have abdominal pain. They might have diarrhea, which can happen with a lot of different things. They may notice blood in their stool, which again can happen for a lot of different reasons. They may have weight loss. So typically if patients have symptoms, it's really a good idea to go see a provider. And a lot of times the diagnosis is not made until someone has had a colonoscopy or a certain kind of imaging of their belly.
Scott Steele: So Katie, let's swing it over to you now. So I'm assuming you are rolling along in life in your twenties, or maybe even teens, according to what Dr. Lightner said, and thinking life is okay and "Fight Chips," and next thing you know, something comes up. Walk me through what was going on with you where you decided to seek medical attention/ What were the initial tests and what was it like to go through all of this?
Katie Neu: 2012, I was actually a sophomore in college, so it was 19 years old, highly active, always very active in my collegiate life, in high school, never sick ever. That is not a word that we recognize in my family. That is not a word. Also stubborn could also be a word associated with myself and my family. So 19 years old, cruising right along, like you said, in a sorority, serving on different leadership opportunities at college, and I either have blocked it out to be honest, I don't really remember stomach pain being a thing up until this point, but I had these large nodules on my shins and ankles that were debilitating. That was the first thing that I really recognized as a symptom. And I hadn't really established a primary care physician in Mount Pleasant because I never got sick. So I just went home. I went to an urgent care multiple times actually, and that was when my first very romantic relationship with steroids began.
I was given steroids. That was how we solved my, what I now call and know as erythema nodosum, on my shins and ankles. And luckily I got introduced to a physician just by chance at the urgent care that I was going to that said, "This could be a symptom of Crohn’s Disease. Do you know what Crohn’s Disease is?" And I had no idea. Again, this is 2012. I think eight years later we've come a very, very long way. But I had no idea what that was and she suggested I get a colonoscopy.
Scott Steele: So I'm going to stop you there and just bump it back to Dr. Lightner real quick. When we think about Crohn’s Disease, we think about a lot of different things, but presentation for extra GI, is that a common thing? What other types of extra GI manifestations are there?
Amy Lightner: Yeah, it certainly can happen. Crohn's is systemic. So we think about it as a gastrointestinal disorder, but you can get inflammation elsewhere. So you can get inflammation in the eye, you can get skin changes like what Katie experienced, you can get inflammation in your joints where it may be that it just hurts to move around and it almost is like arthritis like symptoms. You can actually get inflammation in the liver and the ducts that are in the liver. So a lot of different types of presentations, so something certainly to keep in mind.
Scott Steele: Katie, you go to an urgent care, you have what you think could be who knows, bug bite, it could be any sort of things that kind of rear its ugly head. Do you remember what it was like when you started looking up ... wait a second, he said, Crohn’s Disease. What is Crohn’s Disease? And you started Googling it or reading a textbook or doing whatever we did back 10 years ago. What was going through your mind? What emotions were you feeling after you were diagnosed? Walk me through that.
Katie Neu: I was mostly confused because I didn't know ... I had no idea what it was. I saw a lot of things that had to do with inflammation. I saw a lot of things that had to do with stomach issues, fatigue, all these things. And it wasn't resonating with me. I did not compute because all I had were these things on my legs. Otherwise, I was perfectly fine. I was continuing on with life. I felt fine. Maybe I was tired if I had to point to something, but truly I was mostly confused. But when we started looking at it and as my symptoms progressed ... From 2012 to 2016, I really didn't have any care because I was really confused. I was like, "Yeah, they said I have it, but must be a mild case. Not me. Must not be me."
Scott Steele: Did you tell your friends about it? Did you tell your family about it? Were you embarrassed by it? Were you confused by it? A lot of times, one of the things, especially we can tell a lot of things about ourselves, but when it comes to our bellies or innards or our bowel movements or things like that, that's not something that you're like, "Hey, how are you doing?" on your first date, "By the way I have Crohn’s Disease."
Katie Neu: Yep.
Scott Steele: You're at a different stage in your life and, as Dr. Lightner mentioned, this is a disease in many cases, of the young. So how did you navigate those waters?
Katie Neu: My family knew, but they weren't sure because no one in my family had had it either. I did not tell my friends at all. I was extremely embarrassed. Actually one of my first feelings when I felt the most embarrassed, I went to go see a GI and no one in the lobby was younger than 50. And I just walked myself in, checked myself into the desk. And I was very embarrassed. It's not a sexy disease by any means, talking about diarrhea and having blood in my stool and those types of things. I really think that I hesitated on even telling my family members, where now as I reflect, there may have been more of those symptoms like blood in my stool and those things that are harder to talk about, even with family members, because it's admitting something that's wrong. And nobody likes to talk about those things. Nobody likes to talk about things that happen in your belly.
Scott Steele: So what was the change? What happened in 2016 or somewhere around there that kind of made the switch that you maybe took on a new light or took it more serious or things got worse for you? And then kind of walk me through that next bit, and then how did it eventually come to the point where you got to know Dr. Lightner?
Katie Neu: 2016, I woke up in the middle of the night with a screaming pain. I was luckily home. I was at home and my mom said, "Do you need to go to the hospital?" And I said, "Yeah, we need to go." So I went to the emergency room and that led to an emergent resection of my small intestine. Felt fine after that. The conversation was that if you have to have one surgery, it's not likely that you'll have to have another one was the impression that I was given. So a lot of life changes. I've graduated from college, moved back home, never really established care with a GI at all, to be able to have some sort of maintained treatment. So I was on nothing. I just said I was going to manage it by diet. People do it, people manage it by diet all the time. I'm following these folks on social media, they've got it, I've got it. Not the case.
So 2016 with the resection was a big reality check. In 2019, from January to August, I had been hospitalized six times and I was seeing a GI in Midland. She actually connected me with Dr. Lashner, who's at the Cleveland Clinic, met with him on October 1st and told him my story. He said, "You need to talk to Amy." Dr. Lightner luckily was there that day, I met her and she said, "This is the therapy that I am recommending. We're going to try and do a scheduled surgery. If you have any major flares, then you need to come back." And October 25th, I was back in the hospital with an extreme flare and October 28th I was in surgery.
Scott Steele: So Amy, you meet Katie and you kind of ... obviously lots going on, prior operation, just got her whole life in front of her, and now all of a sudden you're trying to plan for what I'm assuming is elective surgery, maybe get off the steroids or a little bit of way away from it and time it just right. Walk me through your thoughts and her treatment plans and kind of what guided you in that decision-making process.
Amy Lightner: Yeah. So when I met Katie, she had had pretty long standing inflammation from her prior resection and it involved quite a bit of the small intestine. So about the last 100 centimeters and some of the inflammation was also in the pelvis and just a lot of involved bowel. And she was feeling pretty well. Part of it is her affect. She has this very infectious, positive personality and a lot of energy and never complains about a thing, which I have learned. So she was feeling pretty well, no blood in her stools, able to eat, not having any kind of obstructive like symptoms and, as Dr. Steele alluded to, to was on pretty high dose steroids, which we know steroids are associated with postoperative complications. So, ideally if we think that a patient may be heading toward needing surgery due to the amount of inflammation that she had and not responding to medical therapy with both the biologics and the steroids, we try and get patients off of steroids to optimize them prior to surgery. So, in combination with kind of what was going on in her life in terms of timing the surgery, and also weaning off these steroids, we were hoping to get out to the December, January timeframe, given that she was feeling pretty well. So we were planning for that, but then obviously she ended up back in the hospital with pretty significant symptoms.
Scott Steele: Katie, we don't have to go into all of what had happened over the course of the last year, but I would like to touch on a few things. And the first thing is, is that we have a lot of patients that listen to this podcast. What tips would you have to give to the patients regarding the challenges that you've had to overcome throughout this entire journey and who are either just getting diagnosed with Crohn's or who are currently living with this condition, and maybe don't have that positive bundle of energy that you have, and it even could be even worse or different parts of the body or different things. What would you say to them?
Katie Neu: First of all, I do try and maintain that positive aspect, but those three months were difficult. And secondly, it's okay to have bad days. It's okay to have days that are hard and you're struggling, but I guess the biggest piece is to lean on the folks that you have for support, especially your medical professionals. Find someone that you trust, that you know is going to give you sound medical advice, that you can have an open conversation with. These things are embarrassing and they can be difficult to talk about. So finding someone that is there for you and able to actively listen, like I found in Dr. Lightner and Dr. Lashner and Dr. Regueiro now, is extremely important. Allow yourself the bad days, but really capitalize on the good days too, because the good days is where I find a lot of my energy as well.
Scott Steele: And Katie, what would you say to the healthcare providers out there, the surgeons, the gastroenterologists and primary care docs, from a patient's perspective? We see a lot of patients in a day and, although we have that bond and obviously you two have that bond that's right there, but what would you say to the healthcare providers about just what we should keep in mind when evaluating patients and treating patients with Crohn’s Disease?
Katie Neu: Treat everyone as if you've never heard their story before, as if it's not something that is maybe something that you hear on a daily basis. It's unique to that individual person and what they're experiencing is very unique and they've never gone through it before, and they're terrified. To be able to have someone that they can listen to and that they feel understands at a genuine level makes all the difference and will ultimately capitalize on their treatment. Because there were folks ... I had seen three prior GIs. It took going to Cleveland and meeting Dr. Lightner, Dr. Lasher, Dr. Regueiro to really lean into Crohn's. Now I do a ton with the Cleveland chapter, talk with the women on a monthly basis. So it makes a huge difference to recognize each patient's story as unique and uniquely their own, especially because of what y'all have alluded to that this disease is unique.
Scott Steele: That's fantastic advice for everybody out there, for all of our listeners. And so for those of the people that who know and listen to Butts & Guts, we like to get to know each of our guests a little bit better. And Dr. Lightner, we're going to skip you since you've already had the opportunity to talk to us. And so, Katie, a little bit about yourself first. So, what's your favorite food?
Katie Neu: Oh, gosh. I used to say my mom's spaghetti. I would still probably say my mom's spaghetti is up there. I really like smoothies too, though. It's like a daily thing.
Scott Steele: Fantastic. What's your favorite sport?
Katie Neu: Hockey and football are tied. Grew up hockey family, but hockey and football are tied. Can't wait until I can get back into a stadium, when it's safe.
Scott Steele: Absolutely. And what's the last book that you read?
Katie Neu: Gosh. I have Grit right here, Angela Duckworth. This is the one I'm currently reading. The last one I finished was Where the Crawdads Sing. That's a fiction one that I really, really enjoyed. It was really good, highly recommend.
Scott Steele: As a West Point graduate. I do like the reference to West Point in Grit right off the bat, so good choice on that one. And then I normally say, tell us something that you like about Cleveland, but I will switch it up for your sake. Tell me something you like about Detroit and Michigan.
Katie Neu: Oh, the Great Lakes State, Detroit. The comeback that Detroit has seen over the last five, 10 years has been immaculate. Mackinaw, especially in the fall leaves and all the hiking trails. And I could go on and on, but I know that there are only so many minutes in the podcast.
Scott Steele: Dr. Lightner, back to you, give us a final take home message for our listeners regarding Colin's disease. What should they take away from this?
Amy Lightner: I think one thing is if you are diagnosed with Crohn's and you're feeling okay and you feel pretty good, I think it's still important really to find a provider that you connect with, a gastroenterologist, surgeon and really have them invest in your care. Because I think we could take a look at Crohn's and really think about it more as preventing these symptoms from occurring and using medications to prevent people from getting to the state of needing surgery. So even if you're doing well, find those providers early that you can really trust and have the conversations with.
Scott Steele: Fantastic. And so to download a free treatment guide with information on Crohn's and other inflammatory bowel diseases, please visit clevelandclinic.org/ibd. That's clevelandclinic.org/ibd.
And to speak with a specialist in Cleveland Clinic's Digestive Disease and Surgery Institute, please call (216) 444-7000. That's (216) 444-7000.
Remember, in times like these it's important for you and your family to continue to receive medical care and rest assured here at the Cleveland Clinic, we're taking all the necessary precautions to sterilize our facilities, protect our patients, and it's critical that if you're having some out of the ordinary symptoms that you're not sure about, please contact your doctor, and virtual visits are even available here at the Cleveland Clinics.
So to the both of you, cannot thank you enough for joining us and Katie, especially to you. We really appreciate you coming and sharing your story. I know that's hard to do, but somebody out there is going to be listening and going to have the courage to step forward and make it another day or to reach out to their doctor, and we really appreciate you sharing your story with us.
Katie Neu: Of course. Thank you so much for having me. I really appreciate it.
Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts & Guts.