Bowel Moments

Meet Kaitlyn N!

• Alicia Barron and Robin Kingham • Season 1 • Episode 123

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Ever wondered how someone turns a challenging health diagnosis into a source of artistic inspiration? This week we chat with Kaitlyn Niznik about her microscopic lymphocytic colitis and how is influenced her life and her art! Kaitlyn offers a unique perspective, sharing her journey from diagnosis to becoming an empowered advocate through her art. As an art teacher, Kaitlyn navigates the daily balancing act of managing her classroom and her health, all while creating meaningful art that she shares on Instagram. Discover how her experiences with colitis have ignited a passion for medical illustration and inspired her creative process.

Join us for this episode of Bowel Moments, where we explore the intersection of art and life with Kaitlyn Niznik, all wrapped up in a narrative that's as uplifting as it is insightful.

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Speaker 1:

Hi, I'm Alicia and I'm Robin, and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD Serve on the rocks. This week we talked to Caitlin Nisnik. Caitlin is our first guest living with microscopic lymphocytic colitis. We talked to her about what that is, what it was like being diagnosed, and some of the treatment options that she's tried. We talked to her about what it's like being an art teacher and managing a classroom while also managing her microscopic colitis. We talked to her about how it's inspired her art and all of the beautiful pieces you can see on her Instagram account, and also how it's inspired her to look into becoming a medical illustrator Cheers.

Speaker 2:

Hi everybody, welcome to Bell Moments. This is Robin. Hi everybody, welcome to bell moments.

Speaker 1:

this is robin hey everybody, this is alicia and we are so excited to be joined by caitlin nisnik. Caitlin, welcome to the show. Thank you for having me. We are so excited to hear your story. But first, first question for you is what are you drinking?

Speaker 3:

I'm drinking ginger peach turmeric tea that sounds lovely.

Speaker 1:

Robin, that sounds lovely had.

Speaker 2:

I haven't had turmeric in a tea yet, but it does sound very lovely.

Speaker 1:

Is it earthy, then Does that make it kind of like earthy?

Speaker 3:

flavor. Yeah, it's a nice herbal tea, okay, it's gentle which I like.

Speaker 1:

Yeah, that is a nice thing. Okay, great.

Speaker 2:

I love ginger tea, and I usually do ginger lemon, ginger lime though, but I like the idea of ginger peach.

Speaker 1:

I'm going to have to try that.

Speaker 2:

Robin, what are you drinking? I am still in recovery mode, so I'm drinking grape Powerade. It's so exciting.

Speaker 1:

That is my favorite flavor, though I grew up drinking grape Kool-Aid and so, like anytime I can get one of those like fantastically fake grape flavored things, I'm like hell yeah.

Speaker 2:

Yes, agreed.

Speaker 1:

Yeah, that's great. I just ate peanut butter as well. Let me tell you what I never want to drink again Lemon, lime, gatorade, never.

Speaker 2:

Oh, is that because of the Poland? I?

Speaker 1:

drank so much of it and then threw it up. So I'm done. I'm done drinking lemon lime. Let me tell you Anyway, sorry, I'm scarred by this, I'm scarred by my experience, everyone.

Speaker 2:

Imagine having to do seven of those in just two years.

Speaker 3:

No, you'll have to get a new flavor of Gatorade every time. I know.

Speaker 2:

That's why I do Gatorade, that's why I do the Gatorade Miralax, because I can at least have a different flavor every time and it's not like something where it's not like you get. That's your only option. You have to have that same lemon lime flavor that they put in those big gallons of stuff. That's why I do Miralax. But I also get Zofran. So I, when I start my prep, I take Zofran before I even start my prep.

Speaker 1:

Okay, I'll keep that in mind for five years from now when I need to get it done again. Because, yeah, I was. This is the second time and both times I was like vomiting. I was so nauseous. So I don't know if it's just like the volume of liquid, or whether it's the viscosity, or whether it's just I don't know, I don't know.

Speaker 2:

But um Alicia, what? What are you drinking right now?

Speaker 1:

Cause you're gonna have to cut all of that out. I am drinking Waterloo cherry limeade. It is quite good. Actually, I'm a big fan of the Waterloo's, you know. Thank you to guest Caroline of like episode 10. I think I mean forever ago. Who introduced us to Waterloo? I'm a big fan. I'm a big fan of it, but had Waterloo's Really, I feel like you would like them. They're, they've got quite a bit of flavor.

Speaker 1:

Like it's a nice like slightly it in a like a champagne glass. No, I like it a little. I mean it's. It's a little bit stronger of a flavor, but slightly less. I feel like slightly that's bubbly than the.

Speaker 2:

Oh, that would be good for me. Lacroix is too bubbly for me.

Speaker 1:

I mean, don't quote me on this, Cause you are the bubble expert on sparkling waters. Obviously not champagne, cause that's me, but for sparkling waters, yeah. So I feel like it is a little less bubbly, so you might like that. I'm going to have to try it, yeah, okay, I'm a big fan. Anyway, this isn't about drinking or Zofran or any of that.

Speaker 2:

It's a little bit about drinking, just a little bit.

Speaker 1:

You know, when she said to me like no alcohol today, I was like dang it, like I thought I could have a glass of wine. I have a lovely, lovely rosé open in my fridge. I guess I won't be drinking it.

Speaker 2:

Next week. Next week For recording purposes.

Speaker 1:

Oh, I was like she told me just tonight I was like no, I just meant for recording On to the show. Caitlin, it's not about drinking, it's not about bubbly waters, it is about you. So tell us your IBD story. What brought you into our community?

Speaker 3:

So hi everyone. I'm an artist and educator and I was diagnosed with microscopic colitis four and a half years ago, but I've probably suffered with symptoms for over six years now. So my symptoms started in undergrad, when I was in college for my art degree, and I just thought college was super stressful. I thought maybe I wasn't used to someone else's cooking and the cafeteria food was a little off some days and I found myself always having to stop by different bathrooms on my way to class or on my way to the dorms, but it was convenient, so I kind of ignored it for a while. Once I graduated, I got a job two months later and I started teaching and my symptoms kind of started getting progressively worse. I had way more frequency in bowel movements, I had a lot more pain going on and my doctors kind of just chalked it up to stress and I was like, yeah, the stress of a new job, I get it.

Speaker 3:

Then I finally started a low residency master's program, because in New York State you need your master's to maintain your teaching license. So then I went to the master's program. It was a 10-day residency every six months and that time it was immediate. After every meal I would get intense pain and just be running to the bathroom. And we had a very set schedule in grad school where you went immediately from dinner to a lecture center, to an artist lecture and then you had critiques and stuff. So I really needed to function and I was finding it extremely hard to do so and then I thought it would get better when I got home. And it didn't. It just kind of stayed that way for months and months and my pain was getting worse. I was losing weight drastically and I had fatigue, diarrhea, presyncope before bowel movements and this time, coming back, I have long commutes. I'm in upstate New York and you know I have a teaching job, so there were no like frequent bathrooms to save me. And I've always had a phobia of blood and doctors and I have the fun history of fainting at the cider thought of blood. So I've always been weary of doctors and I never wanted to get any testing done. I always just wanted answers, no tests. But after coming back from the first residency I knew I wasn't going to make it through grad school without having tests.

Speaker 3:

So in early 2020, I got my first colonoscopy and I was diagnosed by biopsy results with microscopic lymphocytic colitis and basically it's a lesser known IBD that can only be diagnosed through colonoscopy biopsies and according to one Danish study that the Microscopic Colitis Foundation highlighted just a couple of days ago, rates of microscopic colitis are outpacing ulcerative colitis and Crohn's disease, so it's an up and coming illness. There's two different types lymphocytic colitis, which is what I have, and collagenous colitis, and basically mine is. The pathology of it is that it shows an abundance of lymphocytes in like epithelial tissue, and collagenous colitis just has a thicker collagen band within their biopsy images, and most people diagnosed with the disease are middle-aged women and I'm in my twenties. And afterwards, after I got my results, the pandemic immediately started and so I was put on my first few rounds of budesonide and I was told to quit cold turkey and my symptoms immediately came right back and I jumped to another doctor because I realized you're not supposed to just stop butasinide and other steroids and she listened to all of my phobias and fears of testing and needles, so she decided to have me do a ton of breath tests, so I did some for bacterial overgrowth, I did some for lactose intolerance and fructose intolerance, and the fructose intolerance is what came back as positive as well. So I have to avoid a lot of sugary things like fruit juices and stuff like that. She eventually ran out of tests to do for me so she gave me to another doctor in the city and again during the pandemic. So I was meeting with her virtually and going to virtual appointments. She put me on, I want to say, about 10 different pills and supplements, all at different times of the day, still on Budesonide for two years, but all different kinds of supplements and powders and things that I would just have alarms going off throughout the day. I'd have things I'd have to stir into tea, things I'd have to take with this or that, and it just became a lot of upkeep and my days were revolving around pills and I still wasn't getting any better. And then I got to my current gastro number four and he has me on dicyclamine for the pain, which is hit or miss when it works. It's an antispasmodic that's supposed to slow down your gut and he's had me on three rounds of the drug Xifaxin.

Speaker 3:

Through the years I've tried a lot of lifestyle and diet changes. I met with a nutritionist at one point but it's hard committing to any plan 100% as a teacher. I come home I'm tired at the end of the day, or I've stayed late for my clubs and classes, and then you know, to cook a special meal or to meal prep. Sometimes I find that the meals that I prep I have to throw out because they cause a flare up. So you know it's a little hard going round and round. And Zyfaxin has been pretty well. I did my last one in August. I finished my last round and it usually lasts like it gives me a good one to two months before I start with symptoms again.

Speaker 3:

So right now I'm doing pretty well and as an artist my practice has kind of evolved around my disease. I think as I was switching doctors I wanted to become a more informed patient. So I do that through my art and my art kind of revolves around my studies and they feed into each other. I've been doing pathology slides for the past couple of months and for a year I've been making little tiny watercolor paper cuts of little mini colons and artery systems and I have a rule that for when I'm doing research, every time I don't know a word, I have to make a new slide for it.

Speaker 3:

So I love going down rabbit holes and just trying to figure out as much as I can, and I'm hoping to eventually become a medical illustrator. That would be the goal. I always tell my students that it's okay to be scared during dissection labs. I've been helping them out with their shark dissection labs in seventh grade which is tradition at our school for the past two years and it's going to be three years pretty soon and they're always so scared and squeamish and I'm like I get it. I've been that way my whole life. It took me until I was 27 to be okay doing it. So they have plenty of time to grow and that is my story thus far.

Speaker 1:

Wow, you are definitely the first person we've had that's had a microscopic colitis. I am curious because it's still autoimmune, it's still an inflammatory bowel disease. So I'm curious why they don't use like kind of more traditional medicines, like some of the you know, the Remicades and the Humeras and stuff like that. Are they just not effective against microscopic colitis?

Speaker 3:

It's hard to say. I'm part of a Facebook community that deals with patients that have microscopic colitis and we've all been put on so many different treatments and plans. Some things that work for some people don't work for everyone. The go-to for most doctors is budesonide, so they put us on a few rounds of that to see if it works. Another popular one that I personally hate is the Pepto protocol, which you take Pepto-Bismol three times a day and just keep going with that.

Speaker 2:

And it's wild.

Speaker 1:

Is it because the diarrhea yes, yeah, but that doesn't do anything about the inflammation, like that's what I'm so curious.

Speaker 2:

Yes, I mean, even the Zyvaxin is like for diarrhea.

Speaker 1:

Yes, oh, you looked at it. I think you're looking that up, cause I was like I've not heard that one.

Speaker 2:

It's like prescribing people with IBS to manage diarrhea, which I mean our diarrhea is from a different reason than people with IBS, so that it's what we definitely have to have a doctor on here to get to the bottom of this.

Speaker 1:

I'm genuinely confused about this one and slightly angry for you, but I think that just might be my state today. But yeah, I guess this. It doesn't make sense because if it's autoimmune, you'd assume that you'd be attempting to regulate the immune system, especially if it's a lymphocytic one, which I know there are. I mean, I'm speaking as if I know anything, but I think some of the IBD medications out there do work on T cells, which are lymphocytic cells, right, so you'd assume that that would be good for somebody with microscopic colitis Weird.

Speaker 2:

We'll be back with more information about this, people, don't worry.

Speaker 1:

Don colitis Weird. We'll be back with more information about this. People, Don't worry. Don't take Alicia's medical advice.

Speaker 3:

The interesting part is that most doctors can agree on anything with microscopic colitis, from what age you can get diagnosed with the disease to is it affected by food or not? Some doctors say you have to change your entire diet, get a dietician. And some people say, like food doesn't affect it at all, like you shouldn't be changing anything.

Speaker 1:

Well, I mean, that's just. Everybody in IBD land has heard that.

Speaker 3:

Oh yeah.

Speaker 1:

Oh, food isn't a thing you know and it's like, well, clearly it is. I mean you, yeah, so that to me, I just kind of roll my eyes at that one and go sure, whatever you know, eventually we'll have the research that backs up that. Diet is probably a part of this. But yeah, I'm just mystified by this one that is so fascinating Right now. Is there kind of a? You said it's typically middle-aged women that end up getting diagnosed with this. So is there, like it's never diagnosed in kids or it's very rarely diagnosed in kids, Like why went by middle-aged women? And if you don't know that you can tell me that that's fine.

Speaker 3:

In my personal opinion, because I don't know the real answer, but I would say that that's when majority of people have their first colonoscopy is yeah, so when they're middle aged. And then women are more likely to go to the doctors with symptoms, and my family is a perfect example of that. My dad is so stubborn and he refuses to see a doctor for the exact same symptoms.

Speaker 1:

Cool, yep, that sounds about right. Yeah Well, and frankly, probably it's not till middle-aged, because they've been complaining about stuff and it's been like, oh, it's just stress, you're just eating too many, whatever, and like you get sort of patted on the head and sent home here's your anti-anxiety medicine.

Speaker 3:

Yes, they just did that to me. They were like oh, you're not drinking enough and you're having issues because you're stressed and I, I'm the least stressed, I've ever been Well and I'm sorry, but like who doesn't live with stress in their life?

Speaker 1:

Like we all have stress, it's the way life is Like. You can't just use that as some sort of like you know, all encompassing excuse for why somebody is having symptoms. That's dumb Soapbox. So okay, you said your dad has similar symptoms. Do you have a family history of inflammatory bowel disease or other? No, no no.

Speaker 1:

I wish that it would give me something to bring to doctors, right? Yeah, that's so strange. I mean, I had heard that there's like an increase in people being diagnosed some of this stuff that are younger people, I don't know. Granted, I think I was on Reddit, so you can't take that with a grain of salt. There was lots of like microplastics, so who knows, maybe that's it. Reddit is an interesting place.

Speaker 2:

Just love how you're like jazz hands micro. Reddit is an interesting place. Just love how you're like jazz hands microplastics. And then move on to the next thing.

Speaker 1:

I mean that's what they were yelling about. There was lots of like GMOs, microplastics. It's like, well, everything's genetically modified now, but maybe not the same way. Okay, I want to learn more about these testing they did for the like fructose intolerance and lactose intolerance and stuff like that. Is that again like kind of this idea that diet is contributing factor and thus, if you sort of cut this out, because fructose is basically like fruit sugar?

Speaker 3:

Yes, so you just don't eat fruit. So the thought from that doctor for me was that my diet could be causing inflammation and causing a bit of an issue, even though we went over all my foods and it didn't seem like it. The interesting part for that was, for the hydrogen breath test, I needed to have a specific diet the day before, so for 24 hours before I could only eat broth, chicken, plain chicken and rice, which is a very depressing day for me every time I did these tests, but I would that would trigger symptoms for me every time I did these tests. But I would. That would trigger symptoms for me every single time. And eggs were on there as well, but I would always be running to the bathroom just from that.

Speaker 1:

It's only chicken products you can have. That's really strange. That is, yeah, that's the first time I've heard of just like I mean, robin, have you heard of any? Have you done any of these tests?

Speaker 2:

Breath tests. No, Look again, Alicia and I like to have scientific data backed opinions in here, but this sounds a little bit like these two of the doctors that you saw have bought into the wellness industry and we're not actually using scientific research to inform their practice and what they were recommending to you, because that sounds like it's deep in the wellness industry and not in actual medical care.

Speaker 3:

Oh, absolutely, yeah, One of my primary care physicians, way back when I told her about my symptoms and she gave me a pamphlet on becoming a vegetarian, which was a book that she wrote. Oh bless. And then she charged me for a sick visit instead of an annual. Oh my God.

Speaker 1:

Oh, people, okay, Listen, so many opinions about these people. I want to dig in a little bit more about your fear of doctors and your fear of procedures. You mentioned fainting.

Speaker 2:

That's where I was going to go.

Speaker 1:

Yeah, you mentioned fainting with blood. Number one I want to know how you do shark autopsies. Autopsies, yes, is that what it is Okay? Shark autopsies while being afraid of blood? Oh my God.

Speaker 2:

Wait, that is what I'm going to call Wait, is that not what? What is it?

Speaker 1:

called All of a sudden it's like not in my brain Dissection, dissection.

Speaker 2:

That's it. It's going to be autopsies from now on. That is amazing. Makes it sound more professional Right.

Speaker 1:

It makes you all sound like criminologists over there. That involves blood, surely? So like? Is there a difference between that type of blood and like human blood? Is it the thought of your blood? Is talking to this going to make you faint? Let's start there, okay good.

Speaker 3:

I was like oh God.

Speaker 1:

All of a sudden, she just slumps down in her chair and she's gone, okay. So yeah, is it all blood, your blood? Tell us a little bit more about this.

Speaker 3:

Yeah, yeah. So ever since I've been little I've had a fear of blood, doctors and needles and they all kind of go together. Yeah, ever since I was little I was terrified of finger sticks. Oh my gosh, the worst thing ever for me. Even things like blood pressure would scare me. I remember throwing up on a nurse when she tried doing the blood pressure cuff on me, and I also have a history of fainting when getting shots. I once took down a whole row of chairs on my way out of the doctor's office and my mom. I just kind of started tipping over and then just collapsed.

Speaker 2:

So yeah, oh, my goodness gracious, it was a fun childhood. How do you overcome this fear to be able to go to the doctor and then, like you said, you eventually came to terms with the fact that you had to have tests run in order to get treatment? How do you? I'm really fascinated by this, because I know we've talked to people that have fear of needles and probably fear of blood too, but not the way that you described it. I mean, you have to get over a lot of fear in order to be able to go to the doctor to have these tests run.

Speaker 2:

I don't know if you had bloody stool as part of your symptoms, but I know a lot of people with IBD do, and I have blood all the time. So, like I mean, I can't imagine fainting every time I go to the bathroom. You know what I mean. Like, if there's blood, there is the potential for blood at all times, even though people have told me that any amount of blood is too much blood. I disagree, but I digress also. I'm apparently on a tangent. How did you overcome the fear?

Speaker 3:

So to answer that, I'm going to go to the most dramatic episode first, when I was in high school so a little bit older than the other fainting episodes I was in health class and we had a visitor come to talk to us about donating blood and there were no pictures. She was just talking about it and I remember sitting there at my desk saying uh-oh, and immediately out cold, fainting, and my pregnant teacher had to drag me out of the room by my feet into the hallway and she was trying to like lean me up against a window and I passed out again and so she left me in the hallway. She called a nurse to come with a wheelchair and the bell rang like perfect timing, and everyone was flooding out into the hallway and walking to their class and I was just laying on the floor. It was fantastic. So, yeah, I had to overcome a lot. I've still been terrified of blood and needles. I had to get my COVID shot working out of school in 2020. And I was crying so hard I didn't know how I was going to make it through that. Okay, but yeah, I was very clear with my doctors that, like, no invasive testing, like oh my gosh, even even just shots are just so much for me to handle. So when they said, oh, we need blood tests like we should get you tested for everything, you should do a colonoscopy the worst thing I could think of was, oh my gosh, they're going to do an IV and I can't handle that. It was really grad school that gave me the push I would not have. I would have been 29 and still suffering with diarrhea and not knowing what in the world was going on if it hadn't been for grad school, because I knew there was so much work I had to do and I was not functioning and I knew something had to change and I was down to 90 pounds. That's the lowest I got. So that was when I knew it was like this is now or never. This needs to happen. And it was still the most traumatic thing, you know, just crying and howling and getting the IV set in. But I've done it twice more and I've gotten through it every time. I'm working with a therapist right now on my blood phobia and my needle and doctor phobia. So we're trying to get it together before the next colonoscopy happens, just so I can be a little bit better with IVs.

Speaker 3:

But I think artistically. I like to think of things objectively and logically, if I can, and break them down into simple shapes and forms. That's just how I can draw complex shapes. So I started doing the same thing with the colon and pictures of it. So that's an easy way for me to kind of start to get over my fear of blood is to think about it in terms of color and the shape of the vessels and things like that. It helps also having a distance between the subject matter. You know it's on the screen and I'm separate and I can close my laptop at any time. Going from that to shark dissection is another big jump, because then it's like the formaldehyde and it's the experience of a dissection. Luckily they're all drained of blood. I believe they have like liquid latex or something in there that's meant to mimic blood and it's red and it's dyed red to look like that. But the actual shark is pretty clean and you can distinguish between like different colors of organs. So it's not too bad If you say so.

Speaker 1:

It still seems like it'd be kind of traumatic, frankly, but it's not a person and it's not you, so I think that probably would help. But I applaud you for working with a therapist on this because, yeah, this is pretty complicating for your life, you know, and your medical care and, just in general, like you said, just the fact that you got a COVID vaccine and that was the traumatic experience that you had with it. So I applaud you for working with the therapist. I will say there are some really great resources out there, especially on injections, because there was a lot of people that, during the COVID pandemic, were afraid of needles and so they. There's been a bunch of information put out there about, like you know, things you can do to help with needle fear.

Speaker 1:

Meg Foundation has some really good ones too. It's the Meg M-E-G, like the Women's Name Foundation. They have some really good resources as well of like putting together your poke plan, which is like this is how I want you, as the provider, to support me in this moment. Like I want this kind of music, or I want you to like count to three, or I don't want you to count at all and I want to look, or I don't want to look like it sort of helps you put together like a plan for how you want to tackle this. And yeah, the IV thing is is wild, because of course you know the needle doesn't stay in you, but it's still something in you and I know that's really kind of weird for a lot of people. So that's, that's a whole different deck of cards.

Speaker 3:

Yeah, my therapist and I have worked on a plan, Like you said. I have like a stress ball that I bring and I have to sit in like a certain chair facing a certain way. And they understand, They've seen me and I think my primary care physician also wrote in my chart difficult patient getting blood drawn. So they know that anything they can do to help so that I'm not hollering and crying like a toddler works out well.

Speaker 1:

Yeah, yeah, I think I don't love needles. It's not my favorite, but I cause I think I'm. I'm usually dehydrated though, so unfortunately that's kind of my thing is that you know, but I would imagine that happens for you as well. If you're having like diarrhea, you're going to get dehydrated, and so I'm sure that makes it even extra harder, because your veins are harder to access as excess as well, so it doesn't help.

Speaker 3:

Yes, and, as Robin said, I didn't answer your question before. I'm sorry. Microscopic colitis doesn't usually produce blood in the stools, so thank God I touched that bullet.

Speaker 1:

Yeah, I mean, if you're going to dodge one, that's a good one for somebody like you. For sure. Let's stick with doctors for a little while. Because you mentioned you're on your fourth, fifth, fourth, fourth GI and that you kind of, as you were going along, determined at some point that this was not the right provider for you, and that's one of the things you wrote on your questionnaire too is just, you know, like the importance of finding the right fit for you. So talk to us a little bit about, kind of your, what metrics you put in place to be able to kind of find the right doctor for you.

Speaker 3:

Yeah. So my first doctor wanted to keep me on Budesonide. She thought Budesonide was the end-all, be-all and some providers agree that you can be on it for a long time at a low dose and I knew I wanted something else. I didn't want to stay on a drug my whole life. So that's what led me to change and I went to a more holistic practice and that's why they focused on non-invasive treatments like breath tests, and she referred me to the other side.

Speaker 3:

I didn't make the choice to leave that practice, but she referred me to another doctor and that was the one that was toughest to leave because she was known in her field and it was.

Speaker 3:

I thought that I was getting the best treatment that I could and that's why I was on so many supplements and she's really making an effort and I had a dietician. But the moment it came down to was me crying during a Zoom call a patient portal kind of Zoom and me telling her I'm in so much pain all the time and I said I have a spot I can point to it on my body and I tilted the camera down and I lifted up my shirt and I was like here is the pain and she said there's no organs there that would cause that, and that just tore a hole in my heart. And that was the moment I knew that I needed to study up and I needed to become as informed as humanly possible and take as many notes as I could, and I just never wanted to feel that helpless again and that's what made me leave.

Speaker 1:

So when you went to your next provider, did you sort of interview them before? Do you kind of have a little bit more of a like kind of consult before you said, yeah, this is the person for me.

Speaker 3:

Yes, I definitely did. I don't want to say I'm a commitment phobe, but I definitely wanted to make sure that it was the right fit because I had wasted so many years with other doctors and trying medications that weren't right. But he is absolutely amazing. I can't say enough good about him. He walks into your room and you immediately feel at ease. He's read the research, he's doing his homework and he's not just saying the same thing at every visit. He's like okay, we're at this hurdle, what can we do to solve that? And I love that. He knows about my phobia and he accepts it for what it is.

Speaker 1:

That's important, that's really good that you found somebody that you feel really confident in and that makes you sort of have that sense of calm, that point and a lot of doodles.

Speaker 3:

But then it turned into these little like cut paper pieces that were so teeny tiny. I don't have a lot of space at home to work, so I usually make very, very tiny pieces of art that I can just be like working on on my lap, and I started feeling that these were almost like surrogate colons in a way, like just tending to them and just putting all the little details on them. It felt like a piece of myself that I could control and a piece of myself that I could keep safe. So I started putting them into little petri dishes as a way of protecting them from the elements and just keeping their fragile forms intact, and I think that's a method of self-care for me. It relaxes me and they just are so fun to do.

Speaker 3:

And then, from there, a couple months ago, I started doing watercolor paintings of biopsies and of pathology slides that I was finding online and looking at different staining techniques for microscopic colitis and what the condition looks like under certain conditions, and that led me to my current series. Oh, that's so cool. Yeah, so these aren't on my website yet, but this is an abundance of lymphocytes and I am a big believer in spending a ton of time on detail. So I like that I have something that can take a long period of time and I can stop and walk away when I need to, and then I can come back to it every night after I'm done teaching.

Speaker 3:

What is that watercolor? Like, what is it? Yeah, so I've been using watercolor this one is Gamori's trichrome, I believe staining, and I've just been drawn to like the beautiful colors and some staining techniques that I found in my microscopic colitis research papers. It's just so jarring to see because obviously you want the lymphocytes to stand out so that you can count them and make sure, like the condition is legitimate, and so some of them, the colors that they use, are just so beautiful and jarring at the same time, I would say.

Speaker 1:

Hey Ball Moments fans. This is Alicia, probably interrupting myself, frankly letting you know that Robin and I will be taking a little break for the Thanksgiving holidays, and so your next episode will come out on December 4th, but I want to take this moment in the season of gratitude to let you know how much we are so incredibly grateful for each and every one of you for listening to the show. Thank you also to our guests for sharing their amazing stories and their resilience. Thank you to our medical guests for sharing their passion and their dedication, and thank you to our researchers for their creativity and drive and for sharing your stories of working on behalf of our community every single day. So cheers everyone. Happy Thanksgiving. Yeah, what an interesting juxtaposition of like highlighting something that's wrong essentially that's like overgrowing but putting it into something that looks so beautiful. Because, yeah, that is that is really beautiful.

Speaker 1:

Wow, that's amazing you have you always been an artist Like? Do you just like? Were you born just being like? I look at the world in a different way. Um.

Speaker 3:

I wouldn't say born with the talent. No, I was blessed to have a lot of great art teachers growing up and they kind of fueled a passion for art in me and it's just something that I could always turn to and something that I could make into my own. And that creative spirit just never left and I knew I wanted to become an art teacher, just like them. And I believe it's an art teacher's duty to have like a personal practice outside of work. So that's what I'm striving to do with my watercolor colons no-transcript.

Speaker 1:

Try to do stuff and my sister-in-law would be like I don't. I don't get what you're saying, but it was like her brain just functioned like in pictures instead of in words. So is that you too? I'm just like so fascinated by this.

Speaker 3:

Yeah, I would say I'm a visual learner. Half of the notes I make don't make sense unless I make pictures and sketches for them or I find some pictures online. Yeah, I find that I learn way better visually, but I always give my students the option. I always pair, like visual with words and audio and all that good stuff.

Speaker 1:

That's great teaching. Talk to me about medical illustration, because I think this is that I think you'd be great at it, number one, just because it's like I'm super impressed with the ones that you produce. But what is the call for this? Like, is there? It? Does one find a job listed on LinkedIn for this? Like, how does this work? Because I mean, it's such a like, such a cool idea, but you have to go work for, like, a book publisher.

Speaker 3:

So it's an interesting field. The more I learn about it, the more I love. There's some where you can get into, like courtroom sketches and things like that for illustrating like an accident and what it did to the body so that a jury can understand it. Then there's the publishing side of it, where you're working with either researchers or a foundation or a school, a university, and you're doing illustrations for them. And then there's some that specialize in videos and animation. That's a whole new field that is coming up and it's beautiful to see what they can do with cells and going through the body.

Speaker 3:

It reminds me of a high def version of the magic school bus and that makes a child in me just so happy to see. I've been waiting. I would love to be a part of the field school bus and that makes a child in me just so happy to see. I've been waiting. I would love to be a part of the field in some way, just to spread awareness of little known diseases like microscopic colitis and just to spread information about little known diseases like microscopic colitis. But I'm also hesitant because of AI right now and the way the world is going. I want to see what a graphic design illustrator will be doing in five years time and if they'll be replaced by AI.

Speaker 1:

I think it's wise that you're thinking about that because, yeah, the AI thing especially is getting kind of scary as it relates to like copying people's voices or like creating basically virtual voices that are like sound just like regular people and copying music and things like that. So it's just, yeah, I think that's probably wise to wonder about that for sure, but that just makes me sad.

Speaker 2:

You think of AI's capabilities in research and modeling, and it can do so much more, so much faster than what we can in our human brains. Because Dr Moss, when he was on, was talking about AI and research, and so it's like is it going to do that? Or is it just the fear mongering of it being it's not new, but it's really new being so public and public having access to it? So is it just the fear of the new? You know, you know, you know us Americans. We want things to be hard until we get the hang of the easy thing. And then we're like, oh yeah, let's make everything easy.

Speaker 1:

So you know, I think it's just the wild, wild west. I mean, I think that's the problem is that, like you know, technology is outpacing regulation, and so it's like nobody's governing this at all, and so that's the scary part for me, I think.

Speaker 3:

You won't believe it, but every year I do animal drawing lessons with my eighth graders, and last year was the first year where I was like, oh my gosh, this top page of Google results were all AI images.

Speaker 3:

And so then you have to kind of tell the kids what's the difference between like a tiger that's photographed versus like the AI tiger, and sometimes it's very, very hard to tell. I'm an illustrator, a volunteer illustrator for Knowing Neurons, which is a neuroscience group, and so I illustrate articles and things for them in my free time, and I just finished an illustration that maybe took, I want to say, 25 hours and yeah, knowing that AI can replace that in a second. It doesn't have the same love and feel of the human hand, but if companies know they can get something done quickly, unfortunately, a lot of them take the easy way out. I would love to tell viewers, if you have the time, to look on google for ai medical illustration especially, there's a rat or mouse one and it's horrifying Like AI is starting to try to do medical illustrations and to an untrained eye that doesn't know English, you would think that it might be real and it's just making up words. It's putting appendages where they don't need to go and it's very horrifying.

Speaker 1:

I just yeah, I just looked it up and this is some. This is some weird shit. There's a typewriter in somebody's brain. There's a bunch of people inside this mouse huh oh my god oh wow, this is. This is strange, this is really. Oh no, this is medical illustration of mythical creatures they're mythical.

Speaker 3:

They don't. I can do that. You can mess with the mythical creatures perfectly fine.

Speaker 1:

The internet is a strange place. It makes me sad that that's the case, though, because, like I mean, I guess I can understand the sort of economics of this. Like for you to produce one piece that takes you 25 hours if you're paid an hourly rate for your time, that's a lot more expensive for them to just go into, like chat GPT, and say, come up with a model for a mouse. You know neuro system. So I guess I can understand the economics behind it, but it does feel like it sort of it takes the soul out of it a little bit, absolutely. Talk to us a little bit about being an art teacher, because being a teacher has very specific hours, just like you were talking about going to grad school and having, like, at this time you go here, at this time you go here. As a teacher, you have specific times that you must be in the classroom teaching. How do you cope with that with your microscopic colitis?

Speaker 3:

A lot of meal prep is the one thing that keeps me functioning.

Speaker 3:

On most days I always have oatmeal for breakfast and I can't change that, because every time I try to experiment then it means that I'm running to the bathroom before my day even starts and as soon as I get to school. So I'm trying to set myself up for a good day and then hoping that the meal that I prepped for lunch doesn't make me go into like a pain spiral. So I usually repeat a lot of the same meals throughout the week and as I go I'm lucky in that my schedule has a couple classes and then a break, and then a couple classes and then a break. So as long as I get to school early, I still have time for those bathroom breaks if and when I need them. Most of the time I'm just surviving on Imodium and then my doctor's like wait a minute, you don't have enough bowel movements. Or you know, you're saying you have diarrhea but you're not having enough bowel movements and I'm like yes, because I'm taking Imodium immediately so that I can function throughout a normal school day.

Speaker 1:

So a lot of Imodium, a lot of meal prepping and just sort of pre-preparing for your day. How open are you with your students about this, like, do you tell them that, hey, I might need to?

Speaker 3:

book it out of here. So I do have a group of teacher friends on speed dial that I can call or text and say I need you to cover class, just in the rare case that I'm experiencing an episode. Most of my students I would say the older ones know that there are some days when I'm just in a lot of pain, especially the classes that happen after lunch. So sometimes I might use my wheelie chair as just a normal accommodation and kind of push myself around to the different tables, or I just might need a second to breathe. They also know about my fructose intolerance. They don't really know about my condition per se, but they do know I have fructose intolerance because then I don't feel as guilty for saying no when they bring in snacks.

Speaker 1:

Yeah, that's a good one to use. I would use that too. I think that makes sense. I think that it's a good way of going about finding kind of a balance for your classroom as well, because I'm sure you don't want to share too much information and stuff. But so I'm curious with the pain. It doesn't sound like they've given you like pain medicine. It sounds like it was like antispasmodics and some of the other kinds of treatment Rationale for that.

Speaker 3:

Did they give you a rationale for why they're not giving you, just like, a pain reliever? They're convinced that dicyclamine will work. So it's not working? Yeah, I deal with it. Thankfully, I have a very forgetful memory when it comes to pain. So my doctor will ask me are you fine? I'm like, yeah, I've been doing great. And then I'll look at my daily log and I'll be like, oh wow, I was in like four out of four pain some of these days. But it comes and goes very quickly with me. So it's hard to find something in the moment because it usually happens. Sometimes it happens like after a meal and it comes very quickly and then it goes away like within an hour. So by the time anything would start working it would be too late.

Speaker 1:

I mean Robin, you've had pain issues with your Crohn's disease. Have you experienced something similar, or is yours more of like a pain that comes and stays kind of situation?

Speaker 2:

I have experienced multiple types of pain, which is I said this a couple of times on the show being able to describe your pain more specifically is so important when you're talking to your doctor. So I have had pain in my stomach, which is what led to my diagnosis changing from ulcerative colitis to Crohn's, which is a very different pain from the pain that was in my intestines when I first got diagnosed with ulcerative colitis, so like the pain in my stomach was more like nerve pain and it was like burning pain. Colitis so like the pain in my stomach was more like nerve pain and it was like burning pain. And then I've also had when I feel like I might be having obstruction. It's like throbbing but also radiating, and that usually is there for like an hour or so and goes away unless it unless it really is like the beginnings of an obstruction, and then it usually lasts. I think the only pain that I get that is that comes and goes like that is gas pain. But not everybody experiences gas pain. Some people just have gas and they pass the gas and they move along with their lives and I don't understand those people at all. Apparently that's like the norm. I don't get it at all, because and I didn't have gas pain for the probably 20 years because I didn't have large intestines and just with the J pouch the gas pain is like a new thing and it is debilitating, but it is also sometimes it stays if I can't pass the gas and I have it for hours or days and sometimes if I can pass the gas it's just like you said, like an hour and then it's gone. So I mean I feel like I have had the rainbow of pain experience.

Speaker 2:

The full spectrum of pain experience with IBD and pain medication is not something that's usually prescribed. To be honest with you, I mean it took it. It's why I'm so well-versed in the kind of pain I'm feeling, because I had to be able to say I'm not just coming to you telling you that I mean it took it. It's why I'm so well versed in the kind of pain I'm feeling, because I had to be able to say I'm not just coming to you telling you that I have pain like this.

Speaker 2:

Specific pain that I'm talking about is this and it feels like this and it's hot and it's shooting and it's cold and it's, you know, whatever, radiating, whatever it is, and like you said, caitlin, when you picked up your shirt and said this is where the pain is, I was able to say right here, this area, this is where the pain is. Can you do something about that? And also in the United States nowadays. I know every state is different but, like the state that I live in, I would have to go to a pain specialist in order to get pain medication. Like primary camp can't prescribe it, my GI can't prescribe it, my OB-GYN can't prescribe it, my rheumatologist which that is mind-boggling to me.

Speaker 3:

But like I would have to go to a pain specialist.

Speaker 2:

Yeah, it's weird, like every doctor's office has signs in it that says we cannot prescribe pain medication.

Speaker 3:

And I'm like great.

Speaker 2:

Where do you go to get that? Who can? Who can prescribe that? I mean, I know we have the opioid epidemic in the country, but there are people who legitimately need pain medication.

Speaker 3:

Yeah, and the saddest part is that within my microscopic colitis Facebook group, not all the doctors can agree on whether or not the condition involves pain, and when you're trying to tell a group of hundreds of people that you're bound to upset a lot of them, especially when you have the daily experience.

Speaker 2:

You're bound to upset a lot of them, especially when you have the daily experience that sounds like when doctors tell women that, oh, this isn't going to hurt when they're doing some kind of internal work and they're like, oh, you're not going to feel this, it doesn't hurt. Really, sir Do you have a vulva and a vagina and a cervix.

Speaker 1:

What kind of gaslighting is that nonsense? Yeah, it's like. Don't tell me what my experience of this is, that's so invalidating. And yeah, I'm with you. I would be pissed off for those people. Even if pain wasn't my symptom, I'd be like no, no people, that's not like. You need to listen, right.

Speaker 3:

I'm currently diving into research trying to find a connection, if there's a connection between microscopic colitis and Raynaud's, because I've also developed that within the past year and so I'm going to see a rheumatologist within a couple of months about that. Luckily, I've been a lot better with tests. Now, whenever one of my doctors says you should get tested for this, we should do an x-ray, an ultrasound blood tests, I'm like go ahead, because at this point I just want answers and I want something that works.

Speaker 1:

Yeah, I think there is something. I just want answers and I want something that works. Yeah, I think there is something. I mean it's kind of like when they talk about it being strange that sometimes when people get their diagnosis, they're like kind of happy about it. You know, sometimes having that answer is just the thing that you need in that moment because you like, now I can take steps, I can, I can create an action plan associated with this. I don't have to just wonder what the heck's going on and try and try and try and sort of, you know, just throw spaghetti at the wall. I think it's how they say. You know, like and just like. That can be good for a lot of people to have that answer and I'm glad that that's helping you get over some of this fear. It's just shitty that that's the case.

Speaker 3:

Realizing that it's not just stress Thank God, right, oh my God but also the symptoms are stressful. Just the buildup of symptoms cause stress as well.

Speaker 2:

Caitlin, it has been so lovely to get to know you better on this call. Thank you so much for joining us on the show, but it is unfortunately time for me to ask the last question. What is the one thing that you want the IBD community to know?

Speaker 3:

I'm going to answer it with two things. If that's okay with you, I think, more than anything, just don't be afraid to self-advocate for yourself and to separate yourself from a doctor that you're not seeing results with. I think when I was younger I was so adamant about keeping the same doctor and they know me better than anyone but if you're not seeing results, don't be afraid to change. And then the other thing is that microscopic colitis does happen in younger people. It's real, it's an IBD, and we've been fighting to get it recognized as an IBD. Some organizations accept it and they have it on their website along with Crohn's and ulcerative colitis, and some don't yet. So we're just pushing for that recognition because hopefully that'll lead to more research, more funding and get us the answers that we need.

Speaker 1:

Those are both great pieces of information to share with our community. For sure, we a hundred percent agree with you that if you're not satisfied with your doctor, try another. You know there's. This is a long-term relationship you're going to have with this person. You need to be able to trust them. You need to feel like that you, they, are part of your team, so agree wholeheartedly. And yeah, it sounds like there is definitely much, many more answers that need to be found for microscopic colitis, and so we share your wish for there to be more research funding and more awareness raised here. And, caitlin, like Robin said, it was such a pleasure to get to know you. Thank you so, so much for being on the show and sharing your stories with us and your experiences, and thank you everybody else for listening and cheers everybody.

Speaker 1:

Cheers. If you liked this episode, please rate, review, subscribe and, even better, share it with your friends. Cheers.