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010: Patient Voices: My Crohn’s Journey

On this episode of Life Without Leaks, we talk with Gerri, a 30-something patient who struggled for years with stomach issues before she discovered that she had Chron’s disease. In her own words, she shares how she sought out help, the treatments she tried and how she’s doing today. Listen to this episode of The Life Without Leaks podcast using the player below or check it out on Apple Podcastsiheart Radio, or Spotify.

Resources:

What Is Inflammatory Bowel Disease?

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 dot com. This podcast is supported by our sponsor partner, Medtronic maker of intersystem systems for bladder and bowel control. To learn more about intersystem therapy, visit control leaks.com.

I’m your host, Bruce Kassover, and today we’re going to be talking with Gerri who’s a patient who has a story to tell about her experiences with, uh, I B D and with Crohn’s disease specifically. Welcome Gerri. Thank you for joining us. Thank you for having me. So tell us, when did you first notice that you had a problem?

Gerri: I would say that I’ve sort of had this problem for as long as I can remember that I’ve always sort of had stomach issues. And then I would say that probably like a little more than five years ago, I definitely took a turn for the worst and was noticing it kind of specifically having really bad stomach pain directly after eating, no matter what I ate, no matter what time of day, then sort of started rapidly having it just at any time of day, having a sip of water and having extreme stomach pain and intestinal pain. Shat’s kind of, I would say, I really started noticing it about like six years ago and spent a year kind of figuring it out and getting diagnosed and trying to solve it. 

Bruce Kassover: And how old are you by the way?

Gerri: I am 31 years old. 

Bruce Kassover: Okay. So right around mid twenties is when it started to become really unbearable then?

Gerri: Yes. 

Bruce Kassover: And you would say stomach pain and discomfort, that was really the primary symptom or were there other symptoms, too? 

Gerri: There were other symptoms also, I would say the pain accompanied, usually diarrhea, some fatigue, needing to be near a bathroom, kind of at all times, not knowing, just like having urgency and frequency.

And I would say the problem was exacerbated just by the pain. I used to describe it as sort of like hot lava flowing through my intestines. And that’s kind of like what it felt like all the time. And I spent like a year trying to figure out dietary wise, if there was like cutting out gluten, cutting out dairy, figuring out like if it was a dietary thing, which it turned out, it was not.

Bruce Kassover: So I appreciate you being so frank with us, because I know this is a subject a lot of people are not terribly comfortable discussing, certainly you know, sharing experiences with strangers, but even sharing it with family or physicians. What made you finally decide that you needed to do something beyond just suffer in silence?

Gerri: I would say there was a specific instance. My mom was visiting from out of town. We were walking on fifth avenue in New York, which is where I’m from, doing some shopping. We went and got an ice cream at one of the ice cream trucks, and all of a sudden I was like, I need to leave. Like I’m in pain. Like we need to go home.

And I spent like another, like five hours just like crying, not, not knowing what was wrong, just like having like an incredible amount of pain. And to me, it was so far beyond just like a normal stomach ache. And I couldn’t imagine it being something that was undiagnosable. Like it wasn’t just like a normal system function that sometimes you have sort of a stomach pain issue. And so that was really like the impetus for me to seek a doctor who could help me.

Bruce Kassover: So what did you decide to do now? You know there’s a problem and you know you need professional help. Did you just sort of go to a general practitioner asked for better guidance or did you look out for a specialist? How did, how did you go about finding the right person? 

Gerri: What I did was I just, I started looking for gastroenterologists in my area and ones that took my insurance. So I kind of narrowed down from there and I just sort of cold – went through – I found someone who had a couple, like, good reviews that were available online and a practice that had several doctors that worked there.

And so I just made an appointment, was seen and had a consultation. This doctor who I still see now, she really was so professional and really just like believed the problem. Understood where I was coming from and just like outlined a plan for how we would figure out exactly what was wrong and what we would do.

If that, if it had turned out that it was something that was a disease versus syndrome and figuring out, kind of mapping out how we would treat it. 

Bruce Kassover: So the first appointment, was there any apprehension or did you just go into it without any concern? 

Gerri: I was so desperate to figure out what was wrong at that point that I was just thankful that specialists that handle this just exist. It was great to know that I could find someone so local. I just, I just was so desperate at that point to be treated and figure out what was wrong and to lessen kind of the pain and the extreme that I was feeling that I was not nervous, I was just so relieved to have someone start some kind of a treatment plan. 

Bruce Kassover: That’s great. Did you even have an idea of what the problem might be before you went in? Did you have some background understanding about IBD or Crohn’s disease or any of the stuff, or was it all a big surprise? 

Gerri: I was familiar with like IBS, which is sort of separate from an IBD, like a syndrome versus a disease. But a lot of the symptoms are, uh, correlate. So I, I had a feeling I had been hearing about IBS. I sort of figured that that was where I would fall. And I was completely unfamiliar with Crohn’s and colitis, which are kind of similar diseases in a lot of ways. So I was, I was convinced that there was some, one of those irritable bowel, some things, I just wasn’t sure like where I would fall on that spectrum and left it to the doctor to sort of figure that out for me.

Bruce Kassover: So when you spoke with your doctor and she got a sense of what she thought you had, based on the symptoms you were presenting, did she run any particular types of diagnostic tests to help you really nail down what so you knew what it was?

Gerri: Yes. We did first blood tests and the blood tests at the time were just to, like, looking at sort of vitamin levels across, across like iron levels and B12 and those types of things.

But beyond that, also looking at inflammation, markers in my blood. So they were able to tell just strictly from a blood test, like if there’s some inflammation in your body. And they can’t really pinpoint exactly where it is. It’s just like a general number, that’s high or low. But mine was very high.

And so she could tell immediately when I’m describing these symptoms and I’m having this experience that as soon as the marker in, in a blood test, which was the first step, was high. She knew, you know, there was some sort of inflammation happening. 

Bruce Kassover: Yeah. It makes perfect sense. For those listeners who aren’t really familiar with the difference, IBS – irritable bowel syndrome – as you described is really a cluster of different symptoms that are related to, you know, digestive issues. And it’s usually diagnosed by the symptoms themselves, as opposed to IBD, which is inflammatory bowel disease, which is a family of diseases that are related to inflammation. So after she finished running the tests, what did she prescribe for you? 

Gerri: Once she determined that there was inflammation, then I also had to have a colonoscopy and an endoscopy. And she recommended at that time to do both, just to see how much or little damage there was, and to sort of diagnose, once the inflammation was there, it was safe to assume that there was some inflammatory bowel disease happening. And at that point it’s just determining whether it’s colitis or Crohn’s, which affects different parts of your intestines.

So I went in for a colonoscopy in an endoscopy, and then immediately after I woke up from the anesthesia, she was like, it’s very clear you have Crohn’s disease. Like she took pictures all along the way, all the damage going kind of higher up in your intestine, which is the marker of Crohn’s disease specifically.

And it’s sort of like a patchiness versus like a whole area in your lower intestine that is more full coverage, which is more of a marker of colitis. So she determined it right away immediately. I was placed like from there. The treatment options were presented at that point. And so it would be a biologic medication and there’s kind of certain ones that they try first to see if you’re allergic or not.

But in the interim, they put me on steroid regimen just to make the inflammation go down immediately until I could schedule an appointment with a hematologist who had administer a biologic medication. 

Bruce Kassover: And what did you wind up settling on then after a discussion?

Gerri: My gastroenterologist and my hematologist, both of them recommended to start with a medication called Remicade.

That’s sort of like the first tier. It’s been around the longest as a treatment option there. And they said they both agree that if you can go on it and it helps you immediately, like people can be on it for 10 or 20 years and not have an issue or become, at some point you start developing antibodies toward that medication, so a lot of people there’s, there’s other medications to switch to, but they both recommended that as the first course of action. And so I trusted that they both knew what they were talking about. It turned out that my hematologist suffers from colitis as well, and she had been diagnosed for 20 years, and so she had a lot of experience with that too. So it’s kind of like a perfect matching of doctors who really understood what I was going through and recommended what they would do in that scenario. 

Bruce Kassover: And is that what you’re still taking today?

Gerri: So unfortunately, because of insurance issues, I had to switch to a biosimilar medication, which is called Inflectra, but it I’ve noticed absolutely no change in, in the treatment at all.

Bruce Kassover: And how’s it working for you?  

Gerri: It is a miracle drug I have to say, as soon as I started taking it, I noticed a difference almost immediately. At the, the worst stage, I was like dropping weight. My hair was falling out because I had such low iron. I wasn’t absorbing any nutrients. Everything was running through me. I didn’t, I like didn’t know what to do. I couldn’t function day to day. And after like 48 hours after my first treatment, I felt like a new person. 

Bruce Kassover: Would you say that lasts to this day? You still feel like a new person?

Gerri: There are definitely ups and downs. Like there’s, I ended up with originally the biologic medication. When you start it, you have to get like a Benadryl drip too, and then once they figure out if you’re allergic in any way to it, then you can sort of wean off of that. And the medication will run a little faster when it goes intravenously. But after being on it for maybe two years, every eight weeks, I noticed that before my treatment, I would start feeling like a little bit symptomatic right before.

And so I go every six weeks now just to maintain that. And then, kind of midway through that, around that same time, I also had another colonoscopy where my doctor just checked to see if any of the damage was being repaired and to see how I was doing. And at that point, she put me in, diagnosed me as being in full remission, as long as I’m being maintained by this medication, which is pretty common for most people, they try not to take you off of.

Unless you’re having an adverse reaction to the medication, even if you are in remission because the symptoms can come right back at any time. So, remission maintained on the biologic medication.

Bruce Kassover: And that’s going to be ongoing maintenance? 

Gerri: Ongoing maintenance, forever. I definitely notice there’s some things that are a trigger to me. And sometimes right around my treatment, I start feeling a tiny bit symptomatic, but for the most part, it works like a charm. It’s the key to my survival at this point, is taking this medication. 

Bruce Kassover: Have you had to do any dietary or behavioral changes in addition to that? 

Gerri: My iron was really, really low when I first went and, because taking like a pill form of iron was not absorbing because of the, because of needing this treatment and having the disease in the first place, so because my iron was so low at the same time as I was getting the treatments, I also had to get some iron in an IV form. And I would say that periodically my iron starts dipping like a little bit low and I have to get iron in addition to my regular medication, which definitely helps.

And sometimes I notice a little bit of fatigue, which comes from the iron. Hair loss, that type of thing. So that’s kind of the additional thing that I have to do. 

Bruce Kassover: So now, do you have any thoughts for anyone who finds themselves in a situation that’s similar to you? 

Gerri: I would say the best thing to do is go get it checked out. Even if you’re not sure, self-diagnosing is never the answer. Like go see your doctor, go see your primary care doctor and have them recommend a GI doctor to you. If you know something is wrong with your body, you’re the best indicator that something is wrong and trust your feelings on it. And if a doctor tells you like, “No, no, you’re fine,” like, go see another doctor. You know your body best, and if you have to find a doctor that believes in, trusts that you know, what’s wrong and that, you know, you’re feeling something that doesn’t seem right. So. I would say that finding a great doctor that works with you and, and believes you and tries to help you figure out how to make you better.

Bruce Kassover: Well that’s really an encouraging story and I hope that people do take your words to heart. So thank you, Gerri. I really appreciate you joining us today and hope that you continue to do as well as you sound like you’re doing right now. 

Life Without Leaks has been brought to you by the National Association for Continence. Our music is “Rainbows” by Kevin MacLeod and can be found online at incompetech.com.

Music: Rainbows Kevin MacLeod (incompetech.com)
 Licensed under Creative Commons: By Attribution 3.0 License
 http://creativecommons.org/licenses/by/3.0/

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