Bowel Moments
Real talk about the realities of IBD...On the rocks! Hosts Robin and Alicia interview people living with Crohn's disease, ulcerative colitis, or indeterminate colitis (collectively knows as Inflammatory Bowel Diseases or IBD) and the medical providers who care for our community. Join us to meet people affected by IBD- we laugh, we cry, we learn new things, we hear inspiring stories, and we share a drink.
Bowel Moments
Meet Angie V.!
When your gastroenterologist is also your dad, navigating the complexities of Crohn's disease takes on a whole new dimension. Angie's powerful story reveals a journey of discovery, resilience, and unexpected insights into managing IBD through life's major transitions.
Diagnosed in 2017 following a period of intense personal stress, Angie shares her quest to understand why she developed Crohn's without family history. Her analytical approach has led to fascinating observations about potential triggers and management strategies. Most notably, she's discovered her Apple Watch provides possible early warnings of impending flares through heart rate variability changes.
The conversation takes a particularly compelling turn when Angie discusses her pregnancy experience. While initially smooth, a flare during her third trimester created significant concerns about her baby's development. She candidly shares how her medical team balanced medication adjustments with pregnancy safety, ultimately leading to the birth of her healthy son.
Beyond medical management, Angie reveals how her experience with cold exposure seemed to help her, and how changing her relationship with exercise from aesthetic goals to gratitude for movement transformed her approach to fitness. Her perspective on finding meaning through chronic illness challenges listeners to consider how difficulties might lead to unexpected gifts – deeper connections, greater self-awareness, and opportunities to help others.
Whether you're newly diagnosed, preparing for pregnancy with IBD, or simply seeking fresh insights on managing a chronic condition, Angie's story offers valuable perspectives from someone who's navigating these waters with honesty, humor, and hope. Listen now to discover how technology, family support, and shifting perspectives can create a path forward through the challenges of inflammatory bowel disease.
Links:
- Our episode with Natalie Hayden
- Natalie's Instagram
- Our episode with Dr. Tiffany Taft
- Our episode with Josie McGarva re: heart rate variability
- Our 2nd episode with Jose McGarva and also Stacey Collins, RD about research
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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 Angie V. Angie was diagnosed with Crohn's disease in 2017. We talked to her about the research that she's done to try to figure out why she may have been diagnosed with Crohn's disease when she doesn't have a family history. We talked to her about how she uses her Apple Watch to try to track some things that may be impacting her disease and her symptoms, including things like heart rate variability and others. We talked to her about her pregnancy and what she did to stay healthy and safe during her pregnancy, including when she had a flare, and we talked to her about what it's like to have her dad as her gastroenterologist and the pros and cons of having a family member who's helping you track your disease that closely. I think you'll enjoy the story as much as we did. Cheers.
Speaker 2:Hi everybody, Welcome to Vow Moments. This is Robin.
Speaker 1:Hey everyone, this is Alicia and we are so excited to be joined by Angie. Angie, welcome to the show. Hi, thank you for having me. We are excited to hear your story in just a second, but our first, very unprofessional question is what are you drinking?
Speaker 3:I'm actually having a decaf coffee right now. I try to limit the caffeine after a certain time, but that's kind of what I'm drinking at the moment.
Speaker 1:I understand this one very much, especially for me it was like hit 40. And then it was like if you can't have caffeine after, at least in my case I Like if you can't have caffeine after, at least in my case I stop at noon. That's like a hard stop for me, because otherwise I just like good luck.
Speaker 3:Yeah, and I can't even touch cold brews anymore. I don't know. I think those are way too strong for me.
Speaker 1:I don't know I wasn't a big cold brew fan, but now I'm like, now I'm a little bit afraid of it. So, okay, I will try to stay away from it.
Speaker 3:Last time I had one, it sent me into a panic attack, which is crazy. Oh no, oh my gosh, very weird I never had a caffeine problem until probably the last few years, and then I love caffeine, so that was just very sad. For me it was a sad moment.
Speaker 1:Robin, what are you?
Speaker 2:drinking. I can drink caffeine until the wee hours of the day and often do self-medicating, but today it is chilly and I'm having hot chocolate oh, that's awesome. And also water, leisha what are you drinking?
Speaker 1:I'm having tea today, but I also, just in honor of the other happenings today, I am drinking a glass of wine as well. So I'm drinking some lovely Zinfandel from the Fontanella family winery. Cheers, guys, cheers, cheers. Okay, Angie, all right, next question for you Tell us your IBD story. What brings you into our community so?
Speaker 3:I was diagnosed with Crohn's in 2017, but I had some signs leading up to that prior to the diagnosis. It was December of 2017. So I'd like to go back a little bit, because I think environmental factors have a lot to do with Crohn's, but I also think there is genetic components to it. I think it's just like a mix For me personally. I've tried to figure this out. I'm sure as many people who have Crohn's or ulcerative colitis would try to figure this out. Why do we have this? I just think it's a perfect storm of events environmentally and genetic.
Speaker 3:That kind of contributes to just chaos within the body. So I was in 2016,. I really I was really focused on my relationship with somebody that I was seeing at the time and there was some. There was some issues there. We had been seeing each other for two or three years at that time and I was really stressed in the relationship. I find out I found out in 2016, that there was some infidelity going on and I just kind of like really turned to alcohol and I was drinking a lot, and that was even before like dating him. I was a heavy drinker. I would party in college and I would drink all the time. But I started to use it to kind of self-medicate through like some of these things. So you know, I didn't want to feel the stress and I think stress is a huge thing that goes with Crohn's so I was drinking a lot, I had some family issues going on and just the stress of all that. I just wanted it to go away. So I kind of used alcohol for a long time. But once I found out that my ex was cheating on me, I decided to kind of just move forward from that relationship and just kind of commit to a healthier lifestyle of fitness and working out and I completely cut out alcohol, which was great for my body and everything. But I feel like that's kind of weird because that's when my symptoms started. It's when I stopped drinking and I think it's because I self-medicated so much with drinking that it kind of shut down a lot of that, the symptoms that I would have had. But when I didn't have an outlet for stress, I think that my body kind of didn't know what to do.
Speaker 3:You know that was 2016. I ended up actually getting back together with the same person for another whole year. We moved in together, same sort of thing was still going on and I just couldn't trust him and I ended up leaving and moving home at the age of 29. And I was like, oh my God, I can't believe I'm moving back home. And it was just. I was really, really upset at the time, just having to kind of start over, and you know, he was a lot older than I was, so I thought this was going to be the person that I was going to be with and I was just going through so much stress. But before I ended up moving out after a month of living with him in 2017, I'd lived with him just about a month I had really bad psoriasis, like all over my hands within that first month of moving in and I never had psoriasis before and I went to my dermatologist and she gave me Otedla didn't work for me, but I did.
Speaker 3:I did look up that there is a connection to like skin issues with Crohn's disease and things like that. So I thought, well, that could have been like a telltale sign prior to the diagnosis too. Growing up, I had eczema, so I always had skin issues, so I thought it maybe was eczema, but then it was diagnosed with psoriasis and it kind of went away after about a month. That year that I moved in with him was the same year that I started teaching for the first time within my own classroom. Another stressful event, so stress of living with him, stressful event of teaching, having psoriasis, and just I was really really exercising a lot because I had turned away from that lifestyle that I had, you know, used to have and I kind of just moved towards a healthier lifestyle, fitness. So I would get up at 4.30 in the morning, I would work out, I would come home, I would be with the dog, I would, you know, make dinner for him and me, and then I would go to bed and I was, I was exhausted. I mean, it was going from living at home and kind of doing my own thing and seeing my boyfriend on occasion to living with him, having my own classroom. It just it was very overwhelming and just such a short amount of time and I don't think my body kind of knew how to handle it. So the psoriasis kind of went away. That was October and November of 2017.
Speaker 3:And then, in December of 2017, I started having some. I started to notice like I was really leaning out, like really leaning out, and I wasn't even like trying to. It didn't connect with me that every morning I would go to the gym and I would take my pre-workout and I would use the bathroom within like 15 seconds of taking my pre-workout. And I look back, I'm like I started pre-workout in 2017. And whatever's in some of the pre-workouts I was using a company's pre-workout that has like lots of different stuff in there that I can't even read the ingredients on. So I don't even know. You know, but I knew that I wanted to, you know, to use pre-workout because I wanted to get stronger and I wanted the extra support. Looking back, like I wish I never took it, because I do think that that had something to do with just speeding things up in my system. So I would get up early, hit myself with pre-workout right away. I would use the bathroom like literally within 15 seconds of drinking it and then go do my workout and I thought that was normal. I was like, well, maybe it's just the pre-workout kicking in and whatever.
Speaker 3:And then, as time went on, in November, it started to be like I started to notice that there was maybe some blood in my stool and I didn't understand, like how that could happen. I was like did I eat beets or something. I would call my dad up because he's the gastroenterologist and I'd be like, hey, I just go into the bathroom a lot more and like it's, I think I see like redness, I haven't had any beats. He's constantly asking me if I've eaten beats. That was like the inside joke between us for like ever. I'm like no, I haven't touched anything red Like I don't. You know so. And I started to have this dull ache in my lower left side and my disease is active in my sigmoid colon. So that's like where most of my issues come from. But yeah, so I was starting to have a lot of pain and he's like All right, you know what? Fine, he just wanted to kind of shut me up. He's like Fine, we'll just. We'll just scope you, we'll see what's wrong. I'm sure you're fine because it doesn't run in our family or anything.
Speaker 3:And that was a very mild flare up for me. That my first one. We were able to like nip it in the bud with like just a prezo and Imuran is all I took. I didn't take a steroid at that at that time. I think, coupled with the fact that like I took those two things, though, like my immune system started to get suppressed from those drugs. I started to get colds much more frequently after being on some of those medications and then, you know, I was diagnosed while I was still living with my ex, so that was really stressful. And then I found out some more information about the relationship that I didn't really want to find out and that really set me over the edge, and that's when I moved out. That was when I was in one of my biggest flare ups.
Speaker 3:That was in July of 2018. And I would have been hospitalized had I not had my dad, but I moved back home. So he's like there's no way we're going to put you in a hospital. I can bring you the anything you need. You know IV, you can hook it up at home medications and everything. So I'm grateful, but some part of me kind of wanted to be in the hospital so that I could just feel like I was physically getting the care from everybody. That I did because I just felt so overwhelmed.
Speaker 3:I've never experienced pain like that in my entire life and I still to this day. There's nothing that's been as painful as being in an active flare up. Even the C-section I had with my four month old four months ago, I would, I would go through. I told my husband he's like, how was it? I was like, well, I would go through a C-section every month for the rest of my life. Literally, I literally would. It meant that I would never flare up again. I would literally do that. It's crazy, the amount of pain that you can be in from a flare up. Yeah, so we were trying to get it under control with medications in 2018. I took Euceris and that helped a lot. It took about four weeks for me to get out of it completely, right before the school year started. So I was able to start my second year of teaching. That year was great.
Speaker 3:I met my now husband, who I've been with for almost seven years, and it was, you know, it was pretty wild. Like everything kind of worked out Like I would have never applied for this new job a new. It was pretty wild, like like everything kind of worked out Like I would have never applied for this new job a new teaching job that I got, had my ex not been doing things behind my back. I kind of wanted a fresh start. So I, you know, I applied for a new job. I got a new job.
Speaker 3:My coworker there is actually introduced me to my husband. She met him and she's like I think I have somebody for you at the gym. So she went up to him and she asked him like if he was seeing anybody. And he was like no, like who are you, by the way? Like I don't really know you. And then you know we ended up meeting on a blind date and we've been together ever since and. But I find that funny because the bad things that happen in my life, like things that happened with my ex cheating, and all of that ended up leading me down a road that actually is beautiful now and like I love the life that I have today. You know, despite that, like I was able to kind of just meet new people through this new job, meet my husband, and he's able to be somebody that actually can handle my disease. My ex was not. He felt he didn't know what was going on, but he was not supportive at all and my husband has been very supportive with it. Like it just it makes sense, like things end up happening and then I feel like it all comes out to be the way it's supposed to be, you know. So I've been with my husband now for seven years. He's seen me through flare-ups too, so that was in 2018. I met him.
Speaker 3:I didn't have a flare-up again until like 2020. There were little bouts of like issues that I was possibly flaring up. We would kind of hit me with a little bit of some steroids and then I'd kind of go back into a remission state for a while. It wasn't until COVID that I ended up getting into a major flare up. I think it has a lot to do with the fact that in 2020, I because I had so much more time, like Zoom, being at home and teaching. It was very stressful, but I also had more time at home. So my parents have some weeks and I was just working out more. I was outside more because I had more time at home.
Speaker 3:I can go for a walk and I think I was kind of overdoing it again. I have a tendency to kind of overdo it physically and so, yeah, I was pushing myself. Over the summer School year came, I had been lifting pretty heavy and like pushing myself and I think I think that that does have to do with with my, my disease when I overdo it with physical exertion and stress just stress on the body in general, maybe not taking enough rest days or whatever. But yeah, so I ended up flaring up after going to an apple orchard which I say because I met somebody in Mexico on a vacation who has Crohn's and was like I can't eat apples. And I'm like really, that's so funny. You say that I go because my major flare up that I was in happened right after I went to an apple orchard and I took a bite of an apple from the tree and I had never, ever done that. I usually go to a grocery store buy an apple. But yeah, I kind of connected the dots.
Speaker 3:It was after we had baked something with the apples and I had a couple apples from the apple orchard that the skin on the apples probably sent me into a flare up. I was probably already like on my way there, but I think it sent me over the edge and that was the worst flare up I have ever been in in 2020. I'm 5'4", so I went from being 135 pounds to 107 within three weeks and it was like I couldn't keep anything in. I was in physical pain. I just couldn't go anywhere. I couldn't do anything. I was sleeping on the floor in my living room because I couldn't make it to the bedroom. You know it was the worst pain I had ever been in and I had my husband there and his dad came over to help out with the dogs and it was very supportive. So I'm like so grateful for the support system that I have, but that was really challenging.
Speaker 3:I ended up getting out of that using Euceris again. It took a while to kick in, but I think, well, actually, let's let me back that up. Actually, I think it was actually Predazone that we did for the first time, because I had gotten to a point where Euceris wasn't working correctly and I think prednisone was stronger. I developed moon face, so they had to kind of I don't know if you guys I mean, I'm sure you've heard of moon face before but like yeah, so my face was huge and like I guess that's my dad's like we got to get you off of this. You've been on it for almost, I think, over a month. I was on like 65, 70 milligrams of prednisone. It was horrible, and then we ended up weaning off of prednisone and kind of going on to Euceris.
Speaker 3:I started to kind of flare up again in 2021 after going to Euceris in like March, and that's when I did like we have to try a biologic now, like we can't just give you medications like these, just the steroids like that. So then I you know quickly and I know I'm very fortunate because a lot of people struggle with getting on the right medication and getting the right medication quickly I went to Humira within about a month. My mom works at my dad's office so she was able to talk to the insurance companies. I again very blessed for all of that, because I don't think my parents realized how bad Crohn's was until they saw that I had it. And now I'm sure my mom, when she sees patients coming in now to the office, she's like I feel so bad for these people. I understand now. I didn't understand until you were diagnosed. So that was 2021.
Speaker 3:I've been on Humira since then. I'm still on Humira. I've had to bump it up to weekly dosages instead of every other week. We did do every two weeks for a while, but there were still bouts of flare-ups. I had one in 2023, june of 2023, after a colonoscopy. Actually I think that kind of sent me into a flare up, just the pills that you take to kind of clean yourself out. And then 2024, I thought that I was clear during my pregnancy.
Speaker 3:I felt great most of my pregnancy and then all of a sudden in July we ended up moving into our new house and the moving, coupled with the heat outside, coupled with exercising, coupled being pregnant all of that perfect storm, I think, another flare up and that was the scariest one. That was not the most painful. It was pretty painful but it wasn't the. It wasn't. It was pretty painful still, but it was just scary because the baby and I was just worried about him.
Speaker 3:I was going for weekly appointments and he got down to like the first percentile within like. It was like how many weeks was that? It was probably like 33 weeks, 34 weeks at that point and he was like at the first percentile in weight. They're like no, you know it's okay. And I'm like oh my God, it's because I'm not retaining any nutrients, like I'm just, I'm not retaining anything. So I was forcing myself to eat and like, have, like, ensure drinks and do as much as I can and have as much protein shakes and everything for the baby, as much as I could. But every time I would eat something I'm like I know this has to come out and it's going to be so painful. You know, it's just like it was just such a battle. But Jason was fine. I mean he was God willing. I mean back on wood, he was fine. He ended up coming right at 39 weeks and four days. I had a C-section and he weighed six pounds, six ounces. So he was still. He was pretty solid weight. I mean I think he was in the 18th percentile when he was born.
Speaker 3:But I had gotten out of the flare up for like the last three, four weeks. I was only in the flare up for about three, four weeks during like week 32 to week 35 or 36. So the fact that I got out of it I think really helped him gain some nutrition and everything. But yeah, I've gone through quite a few flare-ups in the last. You know what, six years, seven years now that's been diagnosed.
Speaker 3:But I think that you know I question whether or not Humira is the best drug for me. I bring that up to my dad all the time because you know I'm like should it be this way? Should I still be having these issues if I'm on a biologic? Because even the last few days I've been struggling with I think I might be kind of getting some having some flare up symptoms again and it's like it's because I didn't take my Humira. I'm trying to move it to every nine or 10 days because I keep getting sick because my immune system is so suppressed if I take it weekly. But then when I do that I start having some flare-up kind of symptoms, not huge ones, but I have some telltale signs that I've noticed. When I flare up I get really bad eye twitching Very strange, but every time I've had a flare-up, one of my eyes starts to really just twitch. I think it's stress related, but that's it's. It's something I've noticed. I get these little red spots sometimes on my legs, which I've I've read about that before Just telltale signs that I I kind of just like know what it feels like for me now, like if my lower left side is hurting, it's probably not good for me, you know like that's just I know that's where my disease is like localized. So I just I'm more sensitive to it and I use my Apple Watch a lot to kind of help me. And this is something I kind of wanted to touch on because I think it's really important if you have like a Fitbit or an Apple Watch.
Speaker 3:I have noticed a trend that has been consistent every time I've been in a flare up, and that is my heart rate variability is very low. When I'm in a flare up and I have like the stats on here it's like it goes down to the 20s and 30s average throughout the day. And when I'm not in a flare up, my heart rate variability is in my 90s, 80s, 100, something like that average throughout the day. And then the other thing I've noticed the other trend is my heart rate is. You know, my heart rate is usually like 53 beats per minute, 54, something like that. When I'm in the flare up it goes up to like an average of like 63, 64 per day. So it's significantly higher than what it normally would be. And that has been true every time I've been in the flare up.
Speaker 3:So I hate that I use my watch so much to help me, but it really has been a telltale sign for me, because people are like oh, you're so obsessed with it, like you're so obsessed with your watch, like, just you know, just let it go. My husband's like just let it go, like you know what you're going to be fine. I'm like no, it's like my heart rate variability today is like 30. I'm like I'm something's stressing me out. I don't know what it is, but you know, like I've used it to kind of help me know when to take a step back, like from exercising and taking more rest days and things like that. And I hope that helps somebody, because if I would have known that before, I think that I could have prevented some flare-ups by just, you know, taking it down a notch a couple of days before that. You know, I saw those signs. I hope that that helps someone do it. That's kind of where I'm at right now with my disease.
Speaker 3:So I also want to add in that I think that seasonal Crohn's for me is real. I tend to flare up more in July and August than I do in other months. I not to say like that doesn't happen, but the bad flare ups I've had usually are like August ish. So I don't know, I think I think it has to do with the heat. Some of the things I'm doing now to kind of help me that I think are, have helped me because the medication's working but I still have symptoms sometimes. So a couple of things that have been helping me. This is kind of weird, but when I put my son to sleep. He's four months old. I kind of chant and I do like an own chant and it really puts my baggage nerve and everything. My heart rate gets very low and I and it has helped me kind of keep that low resting heart rate because I want to stay low, cause I know that when it's high that's a symptom that I'm flaring up.
Speaker 3:Cold exposure was another one. This is kind of a funny story. I went to the Bears-Packers game. My husband's a huge Packer fan, I'm a huge Bears fan. I took him in early January and we were out in the cold for like three hours tailgating. He loves it, it's like his thing, great.
Speaker 3:And I cannot stand being cold.
Speaker 3:I just hate it.
Speaker 3:So we got club seats so I knew I wasn't going to be cold for that long.
Speaker 3:I was just going to be outside tailgating for a little bit and I was like all right, I have the inside to look forward to soon.
Speaker 3:And I got inside my you know I had been out in there for I'd been out in the cold for three hours. I got inside, I was sitting in my chair and like I got a notification on my watch that my heart rate had gotten really low like 40s, 41, 42 beats per minute and it hits, reset my like autonomic nervous system because the next day and the days following, two, three days following, my heart rate variability was so high and I thought that was so interesting and I felt great and I was like, wow, cold exposure. I had always heard about it and I'm like I never have tried it but that cold exposure, I think, really helped me get back to like a good place, balanced place, for my disease and so I'm trying to go out in the cold but I will do anything to not be in that kind of pain, you know do we see cold plunges in your future in the summer?
Speaker 3:We talked about like getting one. We have a basement, we have a gym basement, we have like a bunch of stuff down there gym equipment. I'm like we should. We should add that. We should add that to the list of things you know. I I don't know. I do think it helps.
Speaker 3:I didn't want to jump on that bandwagon because so many people were talking about cold plunges. I've never done a cold punch, but just being out in the cold really did. My heart rate that day of the game was like 127, which is super high average. It was like it was. It was unheard of for me, like that was the average for the day, so that's something that's been helpful. I actually have been doing another thing that I think helps a lot of people.
Speaker 3:Colostrum is, I don't know. It's like a new. A lot of people are doing this. It's I think it's called first milk. It offers a range of health benefits. It's packed with proteins, antibodies and it supports the immune system and the reason that I got it was because it was. It helps improve gut health and reduces inflammation and promotes a balanced microbiome and I was like, okay, I'm into that, I can, I would love to have a balanced microbiome. So that was something I was like. I do that every morning I have some colostrum and then I just drink some water afterward.
Speaker 3:But yeah, I think that's important to know that for me also, besides the fact that I in my early days of like before getting diagnosed, another thing I had always, like I said, I had always had eczema, but I also kind of I think I had a lot of anxiety.
Speaker 3:That was like undiagnosed growing up which a lot of people I'm sure do and just very hard on myself and like the fact that, like I would, I started to kind of have like restrictive eating. So like I definitely think that eating, disordered eating, plays a part in my disease too. I feel like today I don't struggle with disordered eating anymore, but in my early 20s, in my teens, I did so I was. I think that plays a part in my, my chronic illness too, just the fact that like I would restrict, like I wouldn't eat as many calories as I probably should, probably not eating the correct things that I should and just not giving myself a balanced variety of nutrition at a young age. And then I do vitamin D every day, vitamin C and then a prenatal and then elderberry, because that's supposed to help with common colds and, like I told you, I think I get sick more often because I'm on Humira so frequently that it has been difficult for me to stay away from getting the flu, getting colds, strep throat, those kinds of things.
Speaker 1:We've talked to people that have gotten pregnant before, but I think you're the first person we talked to that has like gone into a flare while being pregnant, so I would love to talk a little bit more about how did your OB-GYN work with your GI slash dad to make sure that they were managing this together to try to keep you as healthy as possible.
Speaker 3:Yeah, so I was seeing a high-risk doctor as well, and so that was the one that I was going to primarily, and he and my dad did talk about what the best solution would be at the time. They did not want me to be on steroids during pregnancy because that could have some effects to the baby, so we just amped up my Humira from being every two weeks to every week, and that did kick in after about two and a half weeks of being in the flare up fully. It was two and a half weeks of hell, but it did kick in and it did end up working. That was what they did. I was like I wished I could have taken some prednisone or Euceris, knowing that that has helped in the past, but that was not the case. I haven't taken prednisone since 2020 now, which I'm very grateful for. But yeah, I know that that has been the easiest way for me to get out of flare-ups is just taking a bow to steroids and then tapering off.
Speaker 1:Gosh. Yeah, that must have been so scary, though, because you're doing everything right, you're doing exactly what you need to do to stay healthy and stay pregnant, and then, all of a sudden, something like this happens. Gosh, I'm sorry.
Speaker 3:Yeah, it was really challenging. I have a very strong faith. That played actually a really big role in my diagnosis with Crohn's. I did not know the severity of Crohn's when I was diagnosed. I thought, okay, like it's such, it's an illness, I guess I'll deal with it. It wasn't that bad the first time I flared up so I was like okay, but although Crohn's has been challenging, it's really afforded me the opportunity to become more spiritually connected and really rely on my God, because I don't have control over this as much as I want to and as much as all of us want to have control over our diseases. And we try to figure it out. We use our Apple watches, we go in the cold plunge, we do all these things. The reality is is if my body's going to flare up, it's probably going to, and I don't have a lot of control over that and that's when I rely on God and I think that even just me being on this podcast, like the fact that I'm here speaking to you guys, could be a reason that I have grown so I can help somebody else, and I think of the bigger picture today, like I truly do. My God has helped me through so much Like I, I I had gone through I'm gonna get emotional on the podcast I had gone through several miscarriages before having my son and I thought that it was related to Crohn's.
Speaker 3:And I and I will say that because I was like, well, maybe it's my, you know, who knows is the inflammation. And you know, we found out that I had a uterine septum which I had surgery for in June of 2023. That's also when I had my colonoscopy, right within that couple weeks after. So, the surgery, the colonoscopy, that's why I think I had that flare up at that time. It was a lot of stress on the body. But, point being that, I think that definitely there was a lot of hard things that happened in my life the last couple of years that stressed me out, but I didn't flare up a lot during those miscarriages or anything, which is quite crazy, because I thought for sure that my body would go into overdrive being stressed that way. But, yeah, no, I, it's up to God Ultimately, like I don't have control over this disease.
Speaker 3:I don't know why it happened. I don't really understand it. I've learned to have a lot of acceptance around it and to talk to people openly about it, because it's nothing to be ashamed of. It's something that I have, that I have to deal with. But you know what? Other people have, problems that I don't know about, and if I can help somebody by speaking about my problem and telling you guys certain things that have worked for me, like cold plunges, like some of the things that I'm doing, like maybe that's why I have Crohn's, maybe it's to help somebody else that has Crohn's, and that's the way I think of it now. I don't think of it as being a sentence that God gave me. I think of it as being an opportunity to help somebody.
Speaker 2:So sometimes we, as patients, get obsessed with metrics. It's one of the reasons why I don't wear my Fitbit every day and why I have resisted from getting one of those rings, because I know that I will go off the deep end. So I mean, I know that you're watching, like your heart rate variability and all that, but how do you find the balance between staying physically fit, working out as much as you want to, but then not like overstressing your body, especially now that you have a newborn at home?
Speaker 3:You know, I had always put so much pressure on myself and I'm learning to give myself grace. That is a new concept for me that I had to kind of, I think, develop through having Crohn's is give yourself grace. I remember when I was sick and I was unable to do a lot of things. I was doing everything very slowly when I was in a flare-up but I got so much more done because I was going at a slow pace and I wasn't rushing and pushing myself. So like I feel like that has a lot to do with the fact that like I need to take things slow, like balance for me looks like not pushing myself to an extreme and taking pausing the workout video I have, taking a few more breaths and not saying I have to do this, start to finish perfectly. That's my problem.
Speaker 3:I'm a perfectionist and I think when you set that expectation on yourself of like being a perfectionist, that's stressful and stress is such a huge component of this disease. If I just take it back and say, like I don't have to do this perfectly, I'm going to do the best of my ability today. Maybe my perfect today is 60% of what I can give and that's my perfect for today and being okay with that. That just takes a lot of evolution and growth, like. But I feel like I've gotten to a point where I have to enjoy the journey more than the destination, and I know that sounds so cliche, but like it's the truth.
Speaker 3:Like I was always trying to attain that perfect physique that I wanted to attain and now I'm just like I want to work out because I enjoy movement for my body. That's really helped me a lot, because before it was to attain a certain look and now it's to attain a certain feeling of joy that I can move and actually do something with my body, whereas when I'm in a flare up, I can't. You know, I it's a new perspective, it's it's. It's a new perspective and that's, I think, how you gain that balance with working out. You have to look at working out in a different way, as just attaining a goal. It's more than that. It's. It's about appreciating the fact that you can do what you're doing. You know, that's what I think is going to help people most if they are people who work out like me is just changing that point of view a little bit.
Speaker 2:No, that's a very, very lovely way to say that. It's a paradigm shift. I try to be grateful for things that my body can do, and I have a really hard time with that. I say I'm a recovering perfectionist. My mantra is done is better than perfect, but sometimes I have to convince myself that that's the truth. Right, I have way too many sarcastic and dark jokes about my butt trying to kill me. So I mean, but the way that you said that, like it was inspiring to me. I'm like okay, I need to look at this from a different perspective too.
Speaker 3:Yeah, it's taken a long time to get there. I mean, I remember still going through flare upsups and or starting to get going, starting to have flare-up symptoms and be like, damn it, I really want to finish this, this workout program that I'm doing, and I want to finish it. And you know I'm I'm just complaining, you know, about it, to my husband or whoever. And the reality is like what's more important you finishing this workout program or you like, feeling healthy? Like the whole point of working out is to feel healthy, not to. You know, and we lose that perspective as people who are, you know, work out a lot is that we just look at it as, oh, I want to get this done, I want to look this way, I want to achieve this goal.
Speaker 3:What about where's the health component? Fitness and health are not the same thing, you know. It's like being fit is different than having a very healthy body. My body isn't always very healthy. I might look fit sometimes, but my body struggles. So I try to focus more on what am I going to do today to make me feel healthy? Tomorrow I'm taking a rest day. Actually, my program told me I'm not supposed to take a rest day tomorrow. I have a schedule for a different day, but I'm like you know what, I don't feel up for it, so I'm just not going to do it. And the old me would have been so upset with myself and whatever. And the reality is, what am I putting this pressure on myself for? Why? Where did that come from at a young age? Why Nobody put pressure on me? It's strange. I think a lot of us do that. But that's not why we're here. We're not here to put pressure on ourselves. To be a certain way. We're supposed to enjoy what we're doing. That's the whole purpose.
Speaker 1:It's such a hard thing to do, though, I think for everybody not just people living with inflammatory bowel disease, but just everybody it's like just living our lives, striving, striving, striving. That's kind of the American culture, frankly.
Speaker 2:I was about to say it's American, it is uniquely American.
Speaker 1:Yeah, but I'm glad that you're recognizing it. I'm glad that you're starting to connect the dots between the two. And I wanted to circle back on something you said about heart rate variability. It's interesting you say that because there is research that shows that heart rate variability is something that can help people figure out if they're having a flare. We had Josie McGarva talked about that on her episode, didn't she?
Speaker 3:Robin, and so did Tiffany Taft. I thought I was the one that figured this out. I thought I was the one that was going to figure this out. I would call my dad or call my mom or call my husband, call a friend and be like my heart rate variability is really low. I think I'm flaring up my husband's like it's just for watch I go. No, I'm not. There's research. There is research. Thank you, because I feel like I needed that validation for such a long time around that concept. That's been an irritating situation with people. But yeah, I think so, and I know heart rate for sure.
Speaker 3:Mine increases when I'm in a flare up, maybe seven or eight beats more than what it normally is at rest seven or eight beats more than what it normally is at rest. You know it's very interesting. But now that I know that, I wish I had some tools to help me when it is a low heart rate variability, like how can I increase that? Cold plunge seem to have helped, or cold exposure, I should say seem to have helped that one day. But is there anything else I can do? Like that's a question that I'm like.
Speaker 3:I go online, I research a lot about this kind of stuff too, and I'm like that. I'm like I go online, I research a lot about this kind of stuff too, and I'm like, maybe this I'm thinking the vagus nerve has a lot to do with my disease as well Like that rest and digest state right, like so I don't think I'm always in rest and digest, like most people are. My husband likes to say to me you need to turn your brain off. I'm like oh, I don't know how to do that. Like how do you do that? How do you turn your brain off?
Speaker 2:I think most people can do that this is not the group right here, this audience right here, the three of us. We cannot. Alicia and I are not the two people to answer that question for you.
Speaker 3:I can't turn my brain off. I don't know. Even when I'm like resting, I'm thinking about something and it's like I need to learn how to meditate better. I used to do it in 2020. I made a commitment after that, during that flare up, to get me out of that. I was meditating every night and I did it for like almost a year every night. After that it's great. And then, of course, life gets involved and then I just lose track of doing those things. But that that seemed to have helped for a while. Yeah, man, there's just.
Speaker 3:I just wish I had some more information about what to do with heart rate variability when it's low, Because if I could figure out a way to keep that up, I have a feeling that I won't be flaring up. That's just what I've seen. But I also was battling with this chicken or the egg. Is my heart rate changing causing my Crohn's disease, or is my Crohn's disease causing my heart rate variability to change? I don't really know that either. Like, I don't think that it's a heart issue that I have, but I think that is something wrong with my autonomic nervous system that is causing my Crohn's disease or autonomic nervous system to be, you know, off. I don't know. You know that's something I've thought about too.
Speaker 1:So having a baby, a super, super tiny, tiny baby that definitely contributes to all of the other stuff too. When you're so exhausted you're not meditating because you're like I just put the baby down and now I'm so tired, kind of thing, and so I'm sure that has changed things. You haven't necessarily noticed the stress of being a new mom contributing to any symptoms, or how has that worked for you.
Speaker 3:Jason has been a very good, easy baby so far, like in general, sleeping wise. He's given me some really great spurts, like ever since three months he's been pretty much sleeping Like from nine. I go to bed with him, I put him in his crib at like nine and he wakes up like seven, six, 30. It's been awesome. So I cannot complain. I can't with that. But yeah, I mean there's there's been a couple of nights where he you know he'll wake up, but he's pretty easy.
Speaker 3:I think I've had a lot of time to prepare, unfortunately, because I had gone through a few miscarriages. I really prepared myself mentally for having a baby. We had gotten pregnant really soon after trying and I was like whoa, like I was really scared, you know cause I didn't know if I was really ready. You know, I was just all the thoughts and everything and you know what. I had a lot of time to prepare, so I knew how hard it was going to be, but it's been such a joy.
Speaker 3:I really focus on gratitude, you know. Gratitude has been such a huge thing for me in my life and just like with him, even though things can be hard, I look at him and it's just like it's such a blessing. It's so hard for me to even be upset Like he has been a very minimal stressor in my life, I kid you not. I know being a new mom is very hard for a lot of people, depending on the child, but for me it's been. It's been a joy. I mean, if anything, he's distracted me from myself, which is me. I'm the problem, you me thinking about me is the problem. So he's distracted me from me. That's been a huge help, because when I'm in my own head about myself and my disease and it starts the anxiety, that's when I'm in trouble. When I can focus my energy on something else or someone else, that's a safe spot for me actually.
Speaker 1:So this is my first time meeting you and hearing your story, robin. Does you get a chance to talk to all of our guests ahead of time? But I don't. So brand new meeting you Just in our conversation. You strike me as a planner and somebody who does a lot of research, and so I am very curious about when you did decide to start a family and you decide to start your pregnancy journey. What research did you do on this? Because I know some people are pretty intimidated by taking a biologic while they're pregnant, things like that. So talk a little bit about just. You know, how did you get yourself comfortable and prepared in order to even start this?
Speaker 3:I follow a few people on Instagram that are very big in the IBD community. I don't know if I should say the names or not, but Natalie is one of them. Natalie Hayden, she's wonderful, oh my God. God bless her heart. She's one of the best women and I actually she lives in the Chicagoland area as well, so we've connected anyways, and she she's on Humira and she had gone through some things with her Humira and I felt my heart went out to her. So, anyways, I was talking to her about it and I asked her cause she has three kids and she said it was very safe. She gave me some research to look at as well. My dad said Humira is safe to be on during pregnancy after looking at research that he did as well, and so, um, you know what? I just trusted the doctors, I didn't think too much about it.
Speaker 3:I, my pregnancy was pretty good, like the first seven months. I was fine. It was just again that July, august, I'm telling you seasonally, that's not a good season for me. That heat, I don't know what it is about that summer heat. I go for walks and my heart rate stays elevated. After working out, I'll go for a walk. It's just too much, like there's too much heat for me, I think, and I my body doesn't know how to respond to it properly. And yeah, that's, I think that's why I flared up. I remember it had started right before moving into this house that that was a stressor, though, so that was that could have contributed. The moving was was, yeah, very stressful because we had so much crap to move and everything.
Speaker 1:Yeah, moving is for the birds. I've done it too many times, robin has also done it too many times and, yeah, it's just awful, I think that might have contributed to it.
Speaker 3:But I was pregnant, I was kind of hormonal and the flare-up kind of started. I think I said this the 32nd week of my pregnancy and then when I looked at some chart online, that was when like a huge hormonal shift happens during pregnancy. Can't remember exactly what, but I do remember seeing that like some hormone drops at that time, the 32nd week. So I don't know if estrogen, progesterone, all those things play a factor in IBD or not, but I do know that I thought that was quite interesting that that that is when I started to have those those symptoms too. So I don't know.
Speaker 1:I have to fully admit that I don't think I could have my dad as a gastroenterologist and giving me scopes. So I am genuinely curious about how your choice to be with your dad like I get it, like I think it's like it's. You know you have a lot of comfort with this person. This person changed your diapers at some point, but also now you're a grown person. So talk a little bit about having a family member as your GI.
Speaker 3:Yeah, of course he does this for a living. So I just was telling myself, this is my dad, my doctor, he does this for a living. He's, you know, he's helping people. He's going to give me the best care that he can. And I was in so much pain that I was like, whatever, I just want to figure out what's going on at this point, you know. So you know I've gotten over it. Like, all of our family members go to him for gops. You know, I'm like I'm just another family member. Like that's the reality.
Speaker 3:If you have a GI doctor in your family, like yeah, you're probably going to use that person to. You know, if he's he's considered to be a pretty good doctor in the area like you're going to go to him. You know I would have gone to him if I was having issues with my, with my stomach, when I was a kid. I would have like there's no question. But now you know that I've gotten older, I do wonder, like, what it would be like if I went to somebody that specialized primarily in IBD rather than a gastroenterologist. That's something to explore possibly in the future, like. But you know, I just feel like it's. It's not as embarrassing as I thought it would be, but I just feel like I've gotten over it again. When you're in that much pain, you don't care who's helping you or what's going on.
Speaker 1:Well, and if it's your family member, chances are that you you might be able to get seen faster, because it's like well, it's my dad, my dad's going to fit me in, right?
Speaker 3:Thanks, you know, come on, hurry up. It's a blessing. It really is a blessing because I was able to get diagnosed so fast. I was diagnosed within three weeks. I mean, some people go years without being diagnosed.
Speaker 3:My dad's like, okay, you keep persisting that it's not beats, that you're eating, we'll scope you, but I'm sure you're fine. And I'm like, no, I'm in pain and like I would have never asked that, like you know. But so, yeah, they did an upper and a lower and they figured out. He saw the inflammation in my sigmoid colon and how bad it was. And he's like you know, to some people he's like, yeah, andrew's got one of the worst cases of Crohn's I've seen in like 20 years. And I'm like, oh really, you never told me that what he's like. He's like, well, I'm, you know, you're my, you're my daughter. I'm not going to tell you that. But yeah, it's pretty bad when you're in a flare up where it's like he's trying to do the best he can, but at the same time I'm his daughter, so it's hard for him too. It's a struggle. It's a struggle for both of us.
Speaker 1:I think I do. I feel like I have to ask this question. But, like, are you a very frequent beet eater family? Like, why did the beets keep coming up?
Speaker 3:He could not believe that I had Crohn's, like he couldn't believe that I was bleeding. He was just like there's no way, we don't have that in our family, like there's no way, you know. And so, yeah, he just kept insisting that it must've been something. I was eating Tomatoes, ketchup, beets, whatever. Yeah, the beets thing I still bring up to him when I call him.
Speaker 2:But If you've had blood in your stool, you can tell the difference between blood and something you've eaten.
Speaker 1:Oh yeah, I mean, I'm just saying I mean also, don't you like not just have blood, but oftentimes there's like mucus and other things too, like it isn't just, like there's other signs.
Speaker 3:So this was like my first flare up when that happened, so like it was just more like I couldn't tell Like now I look at my poop every time I go, like every person with IBD, and I give my husband a high five. When it's solid, I swear I'll be, like I'll come out of the bathroom Like it was a good one. You know, it was a great poop. Like I didn't even have to wipe. It's like that's awesome. And then there's other days where I'm like oh my God, I think I'm flaring like just having a little bit more diarrhea. Sometimes it's more just like diarrhea. Other times it's more just like there is some mucus sometimes. But for me it's like when I'm in the flare up it's basically like I'm pooping blood, like that's pretty much it. It's bad.
Speaker 2:I will tell you that a positive note potty training so much easier as somebody who has to go to the bathroom more often.
Speaker 3:When I'm not in a flare up I don't have. I go once a day when I'm not in a flare up, and when I'm in a flare up I go 17 times a day. It's like crazy how my body can go from just being a normal body to when I'm in a flare up, having to go so often, you know, and the urgency, which is a new symptom that I just got in the last couple of years. I used to never have urgency. The first five years of my disease didn't really have urgency to go during a flare-up. Now, yeah, I've had accidents. I've never had accidents before, but that's something I had to deal with the last few years.
Speaker 1:So, yes, I think it's really wonderful that your dad is there to be such a fantastic help for you and such an amazing resource and to really like. You know nobody's going to care for you like your dad. But you know when you have somebody who's saying the most that he's the most complicated case of Crohn's he's ever seen, I definitely understand why you might be considering talking to somebody else, you know, just to get a second opinion.
Speaker 3:Yeah, definitely. I mean, when I heard that when we were out with family, I'm like were you exaggerating, you know? I took him aside and he's like no, he's like you have a pretty bad case. And you know it's hard, it's hard for me to be serious with my dad. We have, we have, a joking relationship, you know. And so, all jokes aside, he was like yeah, you have a pretty. Not, there is more information out there.
Speaker 2:There's a lot of options and different approaches now and research is literally. Every single conference, new research is being presented and they're trying new things in clinic and there's new clinical guide. Like I just if it's not somebody who sees only IBD like I, can't tell you the number of specialists that I have heard, either on our show or at patient education or at professional education, that have said if you've seen one IBD patient, you've seen one IBD patient and so, like even Dr Marla Dubinsky said, you know, if I see somebody and I've never seen it before, I don't automatically discount them. I'm like, oh well, this is something I haven't seen before. Let's dive in. Because every single person with IBD it's different for everybody, because our bodies are different, the way that we metabolize stuff is different, our hormones, like everything, is different for every single person. When I went to see somebody, from a regular GI to somebody who only saw IBD which was in 2018, mind you, I did not see an IBD specialist before 2018. And I could kick myself in the butt every day. It was a relief when I said, well, my doctor said that this is not for my Crohn's and she's like I mean for my IBD, and she's like it is. And I was like, oh, I had this and I have this. And she's like that's it too, that's it too. And so you know, it was just like I'm not crazy, I'm not normalizing my symptoms. Like it just made me feel justified, something new, that brand new, which is why I'm considering a second opinion right now and I go to the IBD clinic at Mayo.
Speaker 2:Because of my age I'm 50 and I'm in that perimenopause, menopause stuff I started having hot flashes and night sweats and so when I was talking to somebody who was not my GI, who knows that I'm having night sweats, I was like, oh, blah, blah, blah. I started seeing a registered dietician because of my symptoms and I'm like, if my doctor's not going to help me, I have to do something to try to go to the bathroom less frequently, like I'm going to start seeing my dietician again. And she was asking me she goes okay, you've given me all your crown symptoms. Now, out of all of your perimenopause symptoms, what's the one that's bothering you the most? And maybe we can address that one too.
Speaker 2:And I said night sweats. Like I'm going to the bathroom three, four, five times a night and then I'm also waking up with night sweats. And she said, robin, night sweats is an indicator of IBD active disease. And I said I'd never heard that before. I'm like what are you talking about? And she's like she did work at Cedars and she's like that's one of their intake questions when they're seeing new patients is do you have night sweats? She's like that is an indicator.
Speaker 3:And I'm like.
Speaker 2:I'm going to Mayo and I told them that and they didn't even say that to me, you know.
Speaker 3:So it's like that makes me wonder because the day before my period I get night sweats so badly that I have to change out of my clothes in the middle of the night because I'm sweating. But I think that has to do more with hormones. I don't know.
Speaker 2:I think hormones have played a bigger role in women's players than anybody knows yet.
Speaker 3:I think so as well. I mean, that makes sense to me.
Speaker 2:Angie, thank you so much for coming on the show and sharing your journey with us and sharing your life with us, but it is time for me to ask you the last question, and that is what do you want the IBD community to know?
Speaker 3:So for me, I just want people in the IBD community to know that, although Crohn's comes with lots of challenges physically, emotionally, mentally it's has afforded me, and it can afford you to, a lot of opportunities to help other people by, like, just sharing your story and reaching out and sharing your experiences with Crohn's or ulcerative colitis. It's given me a lot of opportunities to share and to get to know people, to learn about what works for them, what doesn't work for them, and to just spread hope in my God. That's the thing for me is it's given me an opportunity to rely more on my God, and I believe that sometimes we're given things that are hard so that we can use that as an opportunity to strengthen our faith in God. That's true, that's what I believe in my heart. So sometimes, when I'm upset that I have this, I think about it as an opportunity to have more faith in him, that he will help me through this.
Speaker 3:And you know what I've gone through every flare up that I've gone through it's been hard, there's been challenges that come from it, but it's given me an opportunity to become more spiritual, to become more connected with something that I might've not chosen to be connected with had I not been diagnosed. You know what? It's a hard thing, but it's given me a beautiful life, with people in it that support me, and a stronger faith, and that's what for me I believe I'm put up here on earth is to be closer to God and to help people, and maybe by sharing my story I can help somebody.
Speaker 2:Thank, you so much. You're going to help so many people with just sharing your story so openly.
Speaker 1:Absolutely. Thank you so much, angie. It was such a pleasure to get to know your story and get to know you, and so we really appreciate you being so open and honest with us, and thank you so much for sharing with us. Thank you everybody else for joining us and cheers, everybody, cheers.
Speaker 3:Thank you, hi. This is Angie. If you enjoyed this episode, please rate, review, subscribe and share with your friends.
