From Pain ‘Like Lava’ to Remission: Living Fully with Crohn’s Disease

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we’ll get them corrected immediately. 

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org. 

Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover and joining us today we have a patient who’s going to be discussing with us some of her challenges and how she’s managed to overcome some digestive issues that I think a lot of people are going to be very interested in hearing about.

So today we have joining us Gerri, thank you for being on the podcast. 

Gerri Sterne: Oh, you’re welcome. I’m so happy to be here. 

Bruce Kassover: Excellent. So I understand that you are living in New York right now in the city itself. Is that right? 

Gerri Sterne: That is correct. 

Bruce Kassover: I’m sure that that keeps you running around busy and you’ve probably gotten very familiar with finding all the different good bathrooms in the area. Is that right? 

Gerri Sterne: I actually very much have, I know pretty much a public restroom that is accessible, in every neighborhood, I would say 

Bruce Kassover: I could imagine. Now, for those people who don’t have the sorts of issues we’re going to be discussing, that might sound a little strange, but to those people who do have them, I’m sure that everybody’s shaking their head right now saying, “Oh yes, I know exactly what that’s like.” So maybe you want to give us an idea why is it you have become so familiar with all the different rest areas in the city? 

Gerri Sterne: I am so familiar because I have Crohn’s disease and I, when things are at their peak with Crohn’s disease, if you’re, if anyone is familiar with that you need to have a bathroom and you need to have it right away.

Bruce Kassover: So tell me, for those people who have Crohn’s, you’re certainly speaking to the choir, but for those people who know that they’re having some issues, but maybe don’t know exactly what it is that they’re dealing with yet, give us an idea of what Crohn’s disease is and how does it manifest , or how did it manifest and your case?

Gerri Sterne: Sure. Well, Crohn’s disease is is a gastrointestinal disease which is different than like a syndrome or any sort of like issues that you may be having. It’s, it’s actual diagnosable and medicatable disease, which I think is kind of an important distinction there. But for me, for Crohn’s disease, it basically manifests itself sometimes it can be, you know, family history sometimes family history combined with some kind of a trigger starts you having some issues.

And for me, what happened was I just started having really terrible stomach pain pretty close after I was eating. I described it basically as like hot lava flowing in my stomach. It really was like burning hot, terrible pain really soon after I ate, followed by pretty much immediate aggressive diarrhea.

And it, it hit at all hours. If I ate something, if I drank some water, sometimes I would, I would have an immediate issue and it just, I could just tell something was not right. And it was, you know, had a lifetime of kind of some stomach issues but I could really tell that it was different when the actual Crohn’s disease started manifesting itself. 

Bruce Kassover: And how old were you when this first started to happen? 

Gerri Sterne: I officially got diagnosed in 2017. And I would say pretty much the entire year before that I was having symptoms that were progressively starting to get worse. And so it is now 2025, so I was like 27, 26, 27 when I started having really aggressive symptoms. 

Bruce Kassover: And then you recognized, you knew immediately this was not just, you know, I ate a bad fish. This was definitely something going on with your body itself. And you were saying even water could set you off.

Gerri Sterne: Absolutely. Water anytime. Any, and some people have like specific food triggers that you can identify once you’re on a medication for it. But to me it was pretty much every time after I ate, I was also, I had toward the end when I was like, something is seriously, seriously wrong. I was waking up out of deep sleep every single day around 4:00 AM having to rush to the bathroom.

So sometimes it was a food trigger, sometimes a sip of water. Sometimes it would just like wake me in the middle of the night. And so, and these symptoms were persistent, consistent from, I would say for a whole year, but really aggressive maybe the last six months before I really was like, I need to see someone.

Bruce Kassover: And even six months dealing with that sounds like it’s really tough. Tell me this, when you talk about urgency, because that’s something that a lot of people are interested in, was it something that’s sort of like, “Oh my goodness, I have like three minutes to find a bathroom?” Or was it where it would just happen and you had zero time at all? 

Gerri Sterne: I had, I would say not every time, like sometimes it would be, “Okay, I have three minutes to find a bathroom,” and sometimes. If I could force myself to hold, to hold it if I could, but it was like such bad pain that if I decided that I couldn’t find a bathroom within the, in, you know, 30 seconds, it would be me crying and looking for a bathroom.

So I could hold it off with excruciating pain if I really had to find something in, in a couple minutes. But it was pretty immediate and could, could result in me, like basically running for the bathroom. 

Bruce Kassover: Wow. And hence the list of the best places to go in the city. 

Gerri Sterne: A hundred percent. And even, and the running was also making it worse, like going to the gym and like running on the treadmill. I would start running and like have to jump off the treadmill too, because it would sometimes trigger some kind of a bowel reaction. 

Bruce Kassover: Wow, that’s really interesting. So I guess as somebody who was living for at least six months up to a year with these sort of, you know, urgent symptoms, how did you live? I mean, did you have to, prepare a kit to take with you at all times? You know, did you have to strategize, you know, every minute of the day? How did you live day-to-day with those sorts of symptoms? 

Gerri Sterne: I… there was no strategizing. I honestly, I think it’s why it took me so long to be seen is ’cause I, I didn’t want it to be happening, so I was trying to my best to ignore it for a long time.

Like I was, I was like, oh, I’ll just go out for lunch and hope for the best. And I really did that for a far too long. Before I got some help. There was nothing really I could do to prepare. I did I did always kind of have in the back of my mind when I was going out, like if I needed to use the restroom, like I would know where it was or if I was going out for dinner, I would make sure I would go before I left the place or like give myself an opportunity to be triggered if I was going to before I would like leave a venue, especially if I was like going to go on the subway or something ’cause being in excruciating pain on the subway is not fun at all. 

Bruce Kassover: Oh, I could imagine you’re sort of stuck there too.

Gerri Sterne: Exactly. 

Bruce Kassover: So now you said that, that you waited too long. The funny thing is you should actually be commended because we talked to a lot of people who managed to suffer with their symptoms without seeking professional help for far longer. I mean, for certain conditions, you find people waiting 4, 5, 6, 7, 8 plus years sometimes. So, I guess it had to really reach a pretty significant point for you to say, I got to talk to somebody about this. Was there sort of like a deciding factor that said, I don’t care. I’m going to suck it up and go.

Gerri Sterne: Yeah, actually it was… It was my mom was visiting and she like, we loved doing stuff in the city. It was in the summer and then we went to a Mr. Softee truck and got an ice cream and we were walking around doing some shopping and I was like, I need to go home immediately. I like remember stopping her on the street saying, I need to go home immediately.

And I, I couldn’t figure out what was wrong. I just, like, as I said before, like I, it felt like hot lava in my stomach. I was, and I remember she was sitting on my bed with me and I was basically curled in a ball crying because I was in so much pain and I, I just obviously it was triggered by the ice cream, but could have been anything.

I was like, is it lactose intolerance? Like, am I having an issue with dairy? Like at, still, at that point I was in denial that it was just every single food. But that was kind of the turning point. My mom was like, there is something wrong. I’ve never seen you like this… you need to go see somebody.

Bruce Kassover: So you decide that you’re going to go to the doctor, you’ve had this sort of final traumatic experience. I’ve had enough. Was just convincing yourself that you’re going to talk to somebody about this, was that sort of psychologically challenging to do or were you just so over it that you were ready?

Gerri Sterne: I was so over it that I was, I was ready. I was like, I just, I went on, ZocDoc in a few sites. I was trying, I was like, I’m over it. I need to see somebody. And I, I believe I made an appointment like. Almost immediately after, after my mom left because I was just like, “I’m over it. I need to see somebody. I can’t talk myself out of going anymore. I just need to go.” Something is obviously wrong and what at that point, what could it hurt to talk to somebody like they have to be able to advise me on how to get to the bottom of it. 

Bruce Kassover: So what did you do? Who did you go to in the end? You didn’t go to your, your general practitioner; you went to a specialist then? 

Gerri Sterne: Yeah, I went to a specialist right away. Thankfully, my insurance let me find a specialist. I don’t, I didn’t have to get a referral or anything, so I did some research and I found a doctor. I absolutely love her. Her name’s Dr. Laura Frado, and she is the, she works at a practice called New York Gastroenterology Associates.

And there’s like a ton of doctors at that practice. I could not recommend her enough. I think she’s the best, and she is like, so straightforward, no nonsense. She knew immediately something was wrong. And that is, I, I just like, cannot recommend her enough. She just like never takes any symptom, like, not seriously, like she just is always looking for the next thing, the next treatment. She just is the best doctor ever. 

Bruce Kassover: I love hearing that because that’s one of the big reasons why a lot of people don’t get the help they need as soon as they need it. Because, you know, there’s this embarrassment thing. They don’t want to talk about these sorts of subjects to anybody. And you know, the idea that the doctors out there who deal with this deal with this… that’s their job every day, they talk to people about it, they solve it… it’s certainly not embarrassing or scandalous to them. And to hear you had such a good experience, I hope people say, oh, you know what? I can too. 

Gerri Sterne: I hope so too. I and that is like, it’s such a gross thing to talk about, like, and it’s, it’s so hard to explain to somebody. It’s like you feel even weird, like talking about it with people in general. It’s like if, if there’s such a stigma around it, which I wish there wasn’t. But medical professionals are there to help you. Like they’re not, nothing you say is going to alarm them or embarrass them. They are, they are problem solvers.

Bruce Kassover: Yeah. And I can’t imagine that anybody’s going to be showing up with something that they haven’t already seen a thousand times. 

Gerri Sterne: A hundred percent. 

Bruce Kassover: So tell me about then the diagnostic process. What did they do to you to help you determine what you actually had? 

Gerri Sterne: I think the, so the first. The first thing that they did at the office is they took blood. And really what they’re checking your blood for is for any markers of inflammation because Crohn’s disease is basically a disease… your immune system is attacking your intestines thinking there’s something wrong, which can cause like a lot of inflammation. So a blood test is the first thing that, that they did.

I basically did it right when I was at the office. So she could test inflammation markers, and then the, the second thing I did was I had to do a bowel sample which was probably the worst, grossest part of the whole process. And so you. You get a kit, you do the sample, you, I brought it back to the office.

And then they have that tested again for inflammation. And then if those markers come back as you having some inflammation the next thing you do is just get a colonoscopy. Which I obviously did right away. And at the, your first diagnosis, you have to do a colonoscopy and an endo, endo endoscopy where they, you do a scope from the back and do a scope down your throat.

Some of the differentiators like Crohn’s disease is kind of in a family of, of gastrointestinal diseases and it’s related to colitis, but is, is different in a lot of ways. So the distinction really is the part of your colon that is affected by the disease. So a colonoscopy, an endoscopy, by checking both ways, they can see how far the damage has gone.

So you get the colonoscopy, she’s checking, you know, all the way up to the colon and what the sign of the damage with that distinguishes Crohn’s disease is that the damage is kind of more pockmarked. It’s not like situated in one specific area and can affect into the small intestine as well.

And so the only way really to officially diagnose is with a colonoscopy and end endoscopy. They take samples in there, they get it all tested. But you walk out of your colonoscopy knowing whether or not you have it with almost a hundred percent certainty. 

Bruce Kassover: I mean, nobody wants to know that they have a disease. But I would imagine that in some ways it was also a relief to know that you had a disease. 

Gerri Sterne: Absolutely. My husband, but then boyfriend accompanied me. You have to have someone pick you up ’cause you go on a medication. So they have to have, New York someone walks you home. But you know, in other places someone drives you home.

So he came with me and I was a little loopy still from the anesthesia, when my doctor came to talk to me. But he was in the back with me and she was explaining what I had, and I just remember feeling like so happy and relieved because I knew what was wrong and think contributed to by the medication still pumping through my system.

But my husband, I remember him being so. Worried because you’re basically getting a, like a life sentence in a way of like what this disease is, and it doesn’t really ever go away. It’s something you deal with forever. And I remember him being more affected by the news than I was at that point. I was just so relieved to know what it was and that there was treatment available that could potentially completely negate my symptoms.

Bruce Kassover: So tell me about those treatments. What did they offer? What did you try? 

Gerri Sterne: So the first line of defense is basically the longest running drug that’s been on the market. Most providers will prescribe that first; it’s called Remicade and it’s a biologic medicine. It’s basically like telling your immune system to stop a little bit, like to slow down, to stop it from attacking itself.

And it’s administered by IV. I have to go to an office. I go to a, a hematologist office and they administer the medication with a nurse over, over the course of a period of time, and your body starts kind of getting used to it. So your first time, they do it over several hours with having some Benadryl first, which makes you a little snoozy, but just to make sure that you don’t have any kind of reaction to the medication.

But typically, most doctors, I would say, prescribe Remicade as like the first line of defense. It’s been in the market for 30 plus years. Like it’s the go-to first-line drug. And then in the event that you start getting symptoms again, the drug stops working as much, there’s a bunch of other medications you can try.

Thankfully, I’m still happily on Remicade. It’s still working really great for me. Some people are on it for 20 years and never need to switch medications and so that’s the deal for me. I’m on Remicade and love it. 

Bruce Kassover: So they start with this, they test you out to make sure that you can tolerate it and that it’s working for you. How fast was it before you started to see results? 

Gerri Sterne: Immediate, I, within 24 hours of my first… 

Bruce Kassover: Really? 

Gerri Sterne: …dose, I felt better. 

Bruce Kassover: Wow, that’s amazing. So now when you say you felt better, did it really like eliminate your symptoms or did it reduce your symptoms or what’d you see? 

Gerri Sterne: A complete elimination for me a complete elimination of symptoms.

I did not have urgency. I did not have frequency. I, to even currently, I can’t even discern if I have any sort of food triggers that sort of supersede the medication in some ways. Some people have issues with certain foods still even being on the medication for me, it completely eliminated my symptoms.

Bruce Kassover: That is absolutely amazing and I love hearing it. So now you’re still taking the medication you have to go with some sort of a routine. 

Gerri Sterne: Yes, I’m still taking the medication. A couple years in, I did notice I had a little bit of urgency, frequency coming back and basically what we did is I started the medication going every eight weeks to be administered and then we switched it to every six weeks just to make sure that I didn’t have any of that urgency in the last like week before I would get my medication. So I go every six weeks for it. Every year I have to get some, you have to get like a certain, because it’s a biologic medication, it’s sort of suppressing your immune system. You also have to get tested regularly to make sure get extra vaccines.

Like I got the Pneumococcal pneumonia vaccine, even though I’m pretty young. There’s certain kind of vaccines that they want you to get, just to make sure that the, because of the suppression of your immune system, that nothing else is going on. And every year I have to get like a tuberculosis test. I get tested, I get all my inflammation markers tested every year just to make sure the medication is doing its job.

And then about every two years I have to go in for a colonoscopy just to see, make sure that there’s no damage happening, make sure everything’s sort of clearing up. But it’s really just maintenance at this point. 

Bruce Kassover: That’s amazing. That’s really outstanding. I love hearing that. But more than that, I imagine that there are tons of people out there who are going to love hearing that because these are the sorts of problems, like you said, it feels like a life sentence to hear that you could actually, and that some people in real life are getting the sort of relief that you’re experiencing has got to be like a revelation to those people.

Gerri Sterne: I hope so. I can’t believe it. Like, it’s amazing that they have. Medications that really work. It’s so great. 

Bruce Kassover: So tell me, how did this now change the sort of, the way you feel about yourself and you feel about, you know, living your life and doing things in the city and now you’re a new mom also. I mean, how did this change everything? 

Gerri Sterne: I feel like. I feel like I’m surprised at how little it changed. I think like the relief and being treated has made it so that this isn’t really defining who I am anymore. It’s something that is always going to be a part of my life and something that I’ll always have to kind of be thinking about.

But it has. Getting the treatment that I needed has enabled it to be sort of something that’s just like sort of in the back of my mind but doesn’t really like take up that much space in my life, which is kind of amazing and I actually really thankful that that’s the case now. 

Bruce Kassover: That’s more than kind of amazing. That’s great that it does not define who you are. I love hearing that. So as you know, this is Life Without Leaks and, you know, hearing your story one of the things we always like to do before we leave is give our listeners one little hint, tip, strategy, bit of advice for them to live a life without leaks. Now we’re not talking about bladder leaks, but we we’re still talking about continence issues. So maybe you have one little word of encouragement you could share with them today also. 

Gerri Sterne: I would be happy to, I think, go to a doctor. If you don’t like that doctor, find another doctor. Get a second opinion if you need it, but don’t wait. Don’t wait until things are worse. They’ll only get worse. They will not get better on their own. Find a doctor. Find one you trust. If you’re not happy with that doctor, ask. Ask around. Get a recommendation, but go to the doctor sooner rather than later. If you’re having an issue that doesn’t seem to be going away on its own it, it won’t go away on its own. Find a doctor. 

Bruce Kassover: Those are great words, and an outstanding piece of advice. So thank you. I really do appreciate hearing that, and I appreciate you sharing your story. I know it’s not always easy for people to come forward, but it’s going to be helpful to a lot of people, so thank you.

Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.