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 Julie D.- Living with IBD, Celiac, and Autoimmune Pancreatitis
What happens when your body declares war on multiple organs? Julie Davis knows this reality all too well. Her medical journey began with a celiac disease diagnosis at 18, followed by ulcerative colitis in college, but it was the sudden onset of autoimmune pancreatitis in 2011 that turned her world upside down.
Julie's story is remarkable not just for the rare combination of conditions she manages, but for the extraordinary resilience she's shown throughout her journey. As a dietitian who became a physician's assistant while battling debilitating pancreatitis flares, Julie brings unique perspective from both sides of healthcare. She takes us through the harrowing experience of multiple hospitalizations, specialists puzzling over her case at Mayo Clinic, and ultimately, the life-altering decision to have her pancreas completely removed in 2023.
The procedure—called total pancreatectomy with islet cell autotransplantation—is so rare that Julie couldn't find a single podcast about it. Her pancreatic cells were extracted and transplanted into her liver, turning her into what she describes as "essentially a type 1 diabetic" overnight. Despite this dramatic medical intervention and the insulin pump she now relies on, Julie's perspective remains incredibly positive.
Perhaps most inspiring is how Julie has refused to let her health conditions define her limitations. She completed PA school despite having an endoscopy and nerve block the same morning as important exams. She had three children through IVF while managing multiple autoimmune conditions. And today, she's passing on her hard-won wisdom to her daughter, who has inherited celiac disease.
Julie's message to fellow chronic illness warriors rings clear: "It doesn't define you. You can still do things that you love." Her extraordinary journey demonstrates that even the most complex medical challenges can't stand in the way of a determined spirit pursuing a fulfilling career, family life, and future.
Links:
- The Juicebox Podcast
- Mission Cure: Nonprofit working in improve quality of life and bring more treatments to chronic pancreatitis
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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 Julie Davis. Julie is a physician's assistant and dietician who lives with inflammatory bowel disease, celiac disease, as well as autoimmune pancreatitis. We talked to her about managing her inflammatory bowel disease, as well as her pancreatitisitis and all of the treatment that she had to use for that. We talked to her about navigating PA school while also dealing with very significant issues with her pancreatitis. We talked to her about her career as a dietician and how that helped her manage her celiac disease, as well as her inflammatory bowel disease, and also some of the complications she had from her surgery for her pancreatitis. And we talked to her about so much more. We know you're going to love this conversation just as much as we love talking to Julie Cheers.
Speaker 2:Hi everybody, Welcome to Bowel Moments. This is Robin.
Speaker 1:Hello everyone. This is Alicia and we are really, really excited to be joined by Julie Davis. Julie, welcome to the show. Thanks for having me. I'm excited. We are very excited for you to tell your story because it is involved. But our first very unprofessional question for you is what are you drinking?
Speaker 3:You know I'm not really a tea drinker, but I have hot tea tonight because my girls gave me the crud and so I've got a little sore throat.
Speaker 1:But we're powering through yeah oh gosh With three little ones. I would imagine this is probably somewhat common in your house it's real common.
Speaker 3:It's kind of on a cycle. It's like one gets sick and then it goes through the whole family and then by the time the first one gets well, it's starting over.
Speaker 1:So oh no, that's miserable Robin. What about you?
Speaker 2:I am also drinking hot tea. It is May when we are recording this, but it is 30 degrees where I am, so it was a hundred here today, so it snowed where I am.
Speaker 1:Oh my gosh, what are you drinking, Alicia? Tonight I got real excited. I am drinking a strawberry and elderflower Collins tonight. So, it's gin and elderflower tonic and strawberries, and a little bit of lemon as well. So look how pretty it is.
Speaker 3:Oh, that's lovely. That looks way better than my hot tea.
Speaker 1:Sorry, guys, very pretty. So anyway, Julie, it is about you. Tell us your IBD story. What brings you into our community?
Speaker 3:Oh gosh, it's a long one and it's got a lot of twists and turns. So I didn't actually start out with IBD. I started out with celiac disease, which was diagnosed when I was 18. After, gosh, probably five or six years, I mean, I always had stomach problems as a kid. They kind of worked up stuff here and there. It was like the 90s so I'm sure the diagnostics weren't as great back then. But I was actually scoped when I was 18 and was diagnosed with celiac, went gluten free, did great for a while.
Speaker 3:And then I started to have kind of some GI symptoms again during college and I was like, oh, maybe I'm just not being as careful, and you know, college and then had another scope and that's when I was diagnosed with ulcerative colitis, which originally it was just kind of proctitis. It wasn't super bad. They, you know, treated me kind of conservatively and kind of managed it conservatively for a while. And then, 2011, I ended up with acute pancreatitis because I was put on a medication to help with the IBD. With the ulcerative colitis I was put on Imurian and ended up within two weeks in the hospital with acute pancreatitis and so they thought it was a reaction from the drug and stopped the Imurian and I was having more like UC symptoms by that point. But I don't I can't remember exactly the timeline. I've had like a million scopes in my life, both, both ways, so don't remember exactly the timeline on scoping and all that. But long story short, I was in and out of the hospital for the next like, so that was July of 2011.
Speaker 3:And then by February I think, I had been in and out of the hospital like six times with acute pancreatitis and they thought I had cancer at one point. They were doing all these like you know, different scopes to kind of see what was going on, because there was a mass on my pancreas that they couldn't really delineate and figure out. That they couldn't really delineate and figure out and ended up sending me up to Mayo Clinic in February of 2012, where they did the full shebang. I saw the pancreas specialist, I saw the IBD specialist, had a bunch of imaging labs, scopes both ways, diagnostic ultrasound of my pancreas with biopsies, which when I came home, caused another flare. So that was fun. But all that to say, all that diagnostic stuff revealed I had pancolitis by that point and then I had autoimmune pancreatitis, which was very new at that point very unresearched if that's a word minimally researched at that point, and they were able to differentiate it to be type 2 autoimmune pancreatitis, which is commonly seen with ulcerative colitis. So I had, in that fall where I was getting pancreatitis, I had been started on Remicade for the UC and that was the only thing that was helping the UC portion of it.
Speaker 3:But then they stopped it because they didn't know if it was causing more pancreatitis, and so when I went back to Mayo or went up to Mayo, they recommended I restart the Remicade, which is always risky. I'm sure you guys know that if you stop it you could have a reaction to it and thankfully it worked well for me. I've been on that actually since then and I'm still on it and there's we'll kind of get to the later part of the story but there's kind of talks about weaning it down, which is kind of scary. But they restarted me on that. I had been on steroids and stuff for the pancreatitis and that's the main gist of the UC part of it. There's a lot more to the story, though.
Speaker 1:Feel free to give us the full picture if you would like, because certainly they all kind of play on each other and work sometimes against each other. I would imagine yeah, yeah.
Speaker 2:But if you're going through it I mean somebody else who's listening to the show is maybe they're just starting to have pancreatitis and they don't understand what's going on. So if you feel comfortable sharing, we'd love to.
Speaker 3:Yeah, absolutely so. Let's see. Mayo Clinic got me back on Remicade, pancreas stuff, kind of calmed down with a very long course of steroids which, as you know, are not fun. I had to wean off those over, like I want to say it was between three and six months with all the side effects, lost a lot of my hair, which my hair has always been like my feature, you know, and that was kind of depressing and kind of got to, I guess, a good place for the pancreas.
Speaker 3:I was having nerve blocks so they do an endoscopic ultrasound and a celiac plexus block where they inject, like lidocaine and bupivacaine, you know, and some steroids and stuff to kind of numb the area. And those would work for me for about, I would say, three to six months on average. I would hurt more for like three or four days because they always say in I'm a PA, by the way, but they always say in medical school, pa school, don't mess with the pancreas. There's a reason, because it's very fragile and very irritable. So these nerve blocks would hurt for a few days and then, once the medication would kick in, they would help and they provided some relief to the pain of the chronic pancreatitis. By that point. It was chronic because I had so many flares within such a short period of time. So I was doing that. And then they put me on digestive enzymes prescription strength, because when your pancreas gets damaged you lose the ability to digest fats and proteins well, and so I needed some help in that area. And then let's see what else Kept going on. The Remicade Ended up being on a double dose every six weeks, so that's been kind of my regimen since 2012. And thankfully that's put my UC in remission. So I would say, within I don't know about a year of starting the Remicade, after all the initial hoopla of stopping it and restarting it, I was in remission on scopes for my UC, so that was wonderful.
Speaker 3:But then you have this other component where you've got a lot of GI symptoms and so it's like what is flaring? I had to kind of self-advocate. So I'm a PA now, but I was a dietician at the time when all of this was happening and I actually worked with cystic fibrosis patients who have pancreatic insufficiency, and so my worlds were kind of colliding because I was on the enzymes that we also prescribe my patients, and so I kind of told my doctor I was like I need more enzymes. You guys need to dose me higher because I'm still having all these symptoms. I was having a lot of urgency and kind of like loose, greasy, fatty stools, if you will. So once I was able to get on the right dose for that, I regained the. I think I lost like 30 pounds, which I don't really have 30 pounds to lose in that whole process of the pancreatitis and whatnot. So I kind of regained my weight, regained my strength, got back to doing life with my new regimen of nerve blocks every four to six months and enzymes and all of that and Remicade. And then let's see 2014,.
Speaker 3:I decided to go PA school. So I was a dietitian for, I think, three or four years before I went to PA school and just kind of was itching for something a little bit more. Unfortunately, as a dietitian you don't make a lot of money. I think it's gotten better, but it's still not great. So I was like, hey, I can go back to school, I can, you know, get smarter, you know, learn more things and do more with medicine. And so I knew I wanted to go back into pediatrics, went back to PA school. That was about a three-year program and I did relatively well, considering all the stress throughout PA school, I would still get my nerve blocks every four to six weeks. I even had a day where they're real strict in PA school. I had a day where I had to go in the morning and get an endoscopy and a nerve block and in the afternoon I had to do a graded physical exam because they wouldn't let me schedule it on a different day. So post-anesthesia somehow passed it and I was like this is not right. But if you know anyone who's been through a kind of medical school, pa school, anything like that, they're pretty strict. So unfortunately, towards the end of my PA school I did have a flare up and I'm not really sure whether it was pancreas or UC or both. It's kind of hard to tell sometimes.
Speaker 3:I ended up in the hospital for, I think, close to a week and it was during clinical rotations. I was on my surgery rotation close to a week and it was during clinical rotations. I was on my surgery rotation. I actually went to scrub in on a case on a Saturday with the surgeon and then like got out of the case and was like, um, I need to go to the ER. So I went home because I didn't want to show up in the scrubs at the same hospital that I was working at and went home, got a bag packed and my now husband was very sweet, very new to the relationship at this point. But I was like, hey, you're getting you know trial by fire here, you're going to take me to the ER and I think I'm going to be admitted. And I was admitted for about a week and I had to repeat that rotation because if you miss more than three days you have to repeat it. But I still graduated on time with my class because there was a little bit of wiggle room, I guess, if you will.
Speaker 3:And then graduated, got married two weeks later, moved to Oklahoma two weeks after that and did really well for the majority of the rest of that time. We were in Oklahoma for five years and I was not hospitalized during that period of time, which was a miracle because all my doctors were still. I established care with a GI in Oklahoma so they could write my Remicade. But I still came back to see my GI here because he's great and he does all the pancreas stuff and I would come back for nerve blocks and just kind of kept that same routine throughout that period of time we started trying to have kids, had trouble with that, did IVF. It's a long story but we have three kids from IVF. We have twins who turn five tomorrow and then we have a two and a half year old She'll be three in August I guess more than two and a half. All girls. They're very sweet and I did well throughout pregnancy. Some people flare, some people do okay and some people get better. I would say I did worse in the first trimester and then I did better in the second and third trimester for both pregnancies and then did okay, like breastfeeding and all of that. So that was pretty cool that my body was able to accomplish that.
Speaker 3:I was worried all those years that like, oh, I won't be able to have kids, and I remember when I went to Mayo that they my colon was so bad at that point. They were talking about a colectomy and you know they they talked about the scar tissue and if you have a colectomy then they'd probably recommend an ostomy until I'm done having kids and then you could reverse it and all this and so all of that was always in the back of my mind and thankfully Remicade was my miracle drug. I didn't end up having to have bowel surgery, but we moved back to Texas in 2022. My husband's a physician, so he finished up his training in Oklahoma and we moved back here and I had my third child back here in Texas in 2022, in August.
Speaker 3:And then December of 23, or not December it was really more like the fall my pancreas started kind of acting up again and the nerve blocks stopped working and I was like, okay, this is not cool, because everything for 12 years was going well. I had my routine. I was really religious about the minute it felt like the nerve block was wearing off. I'd call my doc. He'd get me in within like two weeks. He was wonderful and I would get a nerve block and then I'd be on my way and I had one that September. I was like I don't think it worked and the area that they inject is very small and I'm a small person, so it's very difficult to get. But he always seemed to get it and he even told me like this is not easy, but like if it's working, we'll keep doing them. Because they even told me like initially, oh, that probably won't work and if it works, it might only work a couple of times and I'm like I've had 12 years of success with those. So I was like, don't break it if it's not broken, you know.
Speaker 3:So we kept doing that and then in September I was like this didn't work and I was real nauseous all the time, hurting it's like a band of kind of epigastric pain, like right underneath my rib cage just feels like someone's kind of stabbing, made it very difficult to eat, started losing weight, just not good. And so by December we were trying all these different kinds of medications to, you know, help with the pain without like taking, you know, narcotics and this, that and the other, which all of those medications that they try have side effects. They make you like super drowsy. They tried me on various different like low dose antidepressants that like cause terrible dry mouth, and I could barely keep my eyes open on the very smallest dose and I was like I mean it helped a little bit with the pain, but I can't function. I'm a PA, I have to think, I have to take care of three kids and I was working full time through all of this. And then, yeah, in December, I was like this isn't working and so I started kind of looking at what the next steps were and they weren't great. So it's like, okay, well, we could try another nerve block which I ended up admitted in January of 2024. I was admitted for about five days because I just couldn't get the pain under control.
Speaker 3:And of course, what's really frustrating is that, like CT scans and things like that at this point come back normal, and so autoimmune pancreatitis can frequently look like normal on a CT scan. Sometimes it can look normal on a specialized MRI. It's an MRCP that they look at the pancreas and the ducts and everything, and really the only thing you can see it on is like an endoscopic ultrasound which very I mean my GI does it, obviously, but not all endoscopists I don't know how you say that not all GI docs can do that specialized ultrasound, and so they ended up doing an endoscopic ultrasound with a repeat nerve block while I was admitted, just kind of a Hail Mary, and it still showed, you know, chronic pancreatitis. I mean nothing new. But then there was this question mark Well, there might be something different with one of the ducts in the pancreas which may be not draining, right. But all that to say, like there wasn't really anything more. They were like we could maybe stent it, but sometimes that can cause more problems and cause more pain. And so I was kind of left with, okay, well, what do we do? And my GI was like, well, maybe, let's you know, send you back up to Mayo. They probably have more options than they did 12 years ago and they're kind of the specialist in this than they did 12 years ago and they're kind of the specialist in this.
Speaker 3:But being a PA and like having the medical knowledge, I started just kind of researching everything and I was like, okay, joined all these Facebook groups and I was just like what's next? And the only thing that kept popping up was removing my pancreas and I was like that's extreme. So I kind of like looked into it. I was like what are the indications for this? A lot of people who have usually it's like a hereditary form of pancreatitis where they've got like a gene mutation that causes recurrent acute pancreatitis which leads to chronic pancreatitis. A lot of people who have that end up with this surgery. There's some mutations of cystic fibrosis that don't actually cause the lung disease but they cause problems with the pancreas. A lot of people with that end up with this surgery. Otherwise, it's some people with autoimmune pancreatitis, but there's not that many of us, so there's not a lot of great data out there, but usually it's people who are.
Speaker 3:They call it kind of like minimal change pancreatitis, so you don't see a lot of findings on scans. But when you actually get in there and take it out it's like horribly scarred and atrophied and just like a chunk of terrible tissue is kind of what I could gather. And so I asked my GI. I was like is this really like the next step? And he was kind of hedgy because it's a big deal. I mean, it's like a massive surgery. They take your pancreas, they take your duodenum, which connects to your small bowel. They sometimes take your spleen. They kept mine. Spoiler alert. I ended up having the surgery. They kept my spleen. But you I mean you reroute your whole GI tract because your pancreas has a blood supply that's the same as the duodenum and so they can't take it out without compromising part of your small bowel and reattaching it and all this.
Speaker 3:So I saw that Baylor in Dallas had a program and they were one of the bigger programs. The surgery was pioneered actually up in Minnesota, I believe, not at Mayo, but at, I think, university of Minnesota. Don't quote me on that. But yes, they do the most. But I was like I can't be away from my family that long because it's not only a 12-ish hour surgery, it's like two plus weeks hospital stay but then you have to be close by for another two or three weeks after you discharge and all that.
Speaker 3:So I looked into Baylor. They got me in February 2nd, so I was admitted January 15th-ish. They got me in for an appointment February 2nd and when I met with the surgeon he was like it sounds like you need the surgery. So the indications for the surgery are like loss of quality of life, having to become dependent on pain medication, inability to maintain weight. Restore quality of life, get off narcotics. Restore, you know, nutrition. Restore ability to hopefully at least get back to work, if not full-time, part-time or school or whatever. Because some kids have this. There's kids who have hereditary pancreatitis that have the surgery when they're little, like real little. So that was heartbreaking but also, I guess, reassuring, because they don't do a lot of stuff in kids unless they're like sure that it's going to be more benefit than harm. So I met with them February 2nd, I went out of work on April 1st, I had the surgery on May 1st and I'm just past a year post-op.
Speaker 3:So it's been a journey. I had another surgery in July because I had a suture granuloma, which was basically like my body trying to reject a suture at the top of my incision. And then I had a surgery in January of this year for a hernia that popped up on my original incision. So I've been back under three times, plus another scope, just to kind of check things. So it's been a year. But I did go back to work in August, part-time. I chose and my doctor was like it's probably a good idea not to go back full-time. I chose to go back part-time, with their reassurance that that was the right decision. Because Alicia knows I'm kind of the if you don't put a barrier or a, I guess, boundary on me, I'm going to do too much. So I went back part-time. I'm, I would say, kind of back to normal.
Speaker 3:Part of the surgery is they when they remove your pancreas, they take your islet cells which make insulin and put them in your liver, and so the goal is that your liver takes over making insulin. About a third of patients don't need insulin after the first is that your liver takes over making insulin About a third of patients don't need insulin after the first initial period post-op. About a third need insulin small amounts and a third need a lot of insulin. I'm in that middle part. I'm now diabetic. I'm on an insulin pump and a CGM, so a glucose monitor and that's been probably the hardest part is learning to be a diabetic. So shout out to anyone who has type 1 diabetes, I have a newfound respect for you. It's a lot.
Speaker 3:But as I was telling you guys before we started, that's kind of how I found y'all's podcast is. I was searching for pancreas podcast. I don't know like who writes a pancreas podcast no one. But there is a very popular type 1 diabetes podcast that had one episode. They might have had another one since, but had one episode. That was someone who had the same surgery as me and so I found that episode and I was listening to her episode. And then I've listened to that podcast a lot because I've learned so much about how to manage my diabetes because I'm essentially a type 1. It's just called type 3C because my pancreas is gone. It's not destroyed by autoimmune surprisingly, because I have all the other autoimmune, but it's a surgical diabetes or whatever.
Speaker 3:But then I was like what other podcast can I find? And I found you guys and I was like, how did I not know this? Because Alicia and I have known each other for years and it's just been. It's been a journey. So that's kind of where we're at present day. The UC is still pretty well controlled. They talked about taking me off Remicade and I was like, yeah, no, I'm not going to go for that. So we're weaning it to every eight weeks instead of every six, and that's going to. We're going to see how that goes for a bit.
Speaker 2:Yeah, that would scare me too. Okay, I'm going to bring you all the way back to the beginning, because I've thought about this like three times. So were you misdiagnosed with celiacs or do you have celiacs?
Speaker 3:I have celiac. To my knowledge, however, because I am now a PA, I was a dietician and my mom is a very, very, very good bookkeeper. I went back through all of my records that she had, because she saves everything, bless her. And the celiac? I do have the gene. I have one gene of the two and one of my daughters has since been diagnosed with celiac. So I think I have celiac.
Speaker 3:However, my biopsies were not like home run celiac and sometimes the biopsies can be like some of those findings can be seen in Crohn's, and so I had this whole like have I had Crohn's this whole time? This whole like existential crisis yes, existential crisis. I'm like you know what I'm saying when I was like have I been misdiagnosed this whole time? And I don't think I. I really do think I have celiac because I eat gluten and like I don't purposely eat gluten but if I accidentally get served gluten or you know, cross contaminated or whatever, I get symptoms. But yeah, it's just, it's an interesting kind of pathway to go down, because I've never had any other findings in my small bowel. So I don't think I was misdiagnosed and I don't think I have Crohn's, but that question didn't pop up in my mind, yep.
Speaker 1:I am curious about pancreatitis, though. Do you mind spending a little bit of time here, cause maybe this will become the episode people find when they're looking for information about pancreatitis. But so you mentioned like autoimmune pancreatitis, can you is? Are there differences in how they manifest, like is there a way to tell that one is autoimmune versus the other, or how does?
Speaker 3:that work Initially? No, so my, my initial bout of pancreatitis was very classic presentation severe, epigastric, like right between your like sternum, rib cage area, abdominal pain that felt like someone was stabbing me, kind of turning the knife. That kind of radiated to my back. Lots of vomiting couldn't get off the I mean I had some UC stuff going on too, but so it was kind of both ends, but it was mostly vomiting and like severe, severe pain. Like my mom found me. I called her and I'm like mom, I'm not okay. And she found me curled up in a ball on the floor in the bathroom because I was just hurting so bad.
Speaker 3:And silly me, because I was like they're going to think I'm like you think pancreatitis, you think alcoholic. So I'm like they're going to think I'm a drug-seeking alcoholic. So I refused pain meds, which I think back and I'm like why, julie, why did you refuse pain meds? The first admission. But basically they admit you. You go nothing to eat or drink, you're on IV fluids, pain meds if you're smart and you take them and nausea control. So I think I was in for like three days the first time and I mean I was 25. So I mean I drank, but it wasn't what brought it on.
Speaker 3:So the delineation between, like, autoimmune versus not really had to come by that special biopsy at Mayo, which I'm sure that other places can do it now, but back in the day not to age myself, but back in the day I had to go all the way up there because they couldn't even do that type of biopsy. They did a biopsy here in Fort Worth but they couldn't do that type of biopsy. So the diagnosis so there's two types of autoimmune pancreatitis. One is linked with what they now call IgG4-related disease, which has a whole I don't want to even speak out of turn because I couldn't tell you every single thing but it's got a whole slew of things that are not just pancreas that it can present as, and in that one you have elevated IgG4 levels. So they tested that on me and mine were normal and so that kind of was like okay, is it autoimmune or not? Because this type 2 was so new and so like I think they found it in Japan or something, so it wasn't very well studied here in the US. But Mayo was kind of on the leading front of delineating that and delineating the link between ulcerative colitis and type 2 autoimmune pancreatitis.
Speaker 3:So when you have now, like when I went to Baylor, you have various different reasons I think I kind of talked through a little bit of it where you can have recurrent pancreatitis, recurrent acute episodes of pancreatitis, and the first thing they said that appointment was we need to do genetic testing on you, not because it's going to change your outcome, but because you have three little girls at home and if you have hereditary pancreatitis then you need to be on the lookout for that in them. And so thankfully I ended up getting it covered by insurance. But there was this whole big hoopla with the genetic testing and insurance and we had to fight it. Real bad because it was like not cheap, but we got that done and thankfully that was negative. So I don't have these certain mutations that are seen with this recurrent pancreatitis, but there's not like a specific gene that they've located for the autoimmune pancreatitis.
Speaker 3:So there's not really a great way to know.
Speaker 3:I mean most people I think you have one episode of acute pancreatitis. It's just like, oh, you got pancreatitis and you know, oh, maybe you drank too much, maybe you ate too much fatty food, you know all the typical things they say, but it's when you have those recurrent episodes, then they're going to start questioning why is that happening, especially in someone who doesn't drink or doesn't drink heavily, someone who doesn't drink or doesn't drink heavily and the pancreas looks different on a pancreatitis with alcohol abuse and a pancreatitis that's not an alcoholic I won't get into all the details, but it looks different and the surgery that I had really isn't indicated for people who have, like an alcoholic pancreatitis because, one, the likelihood that they're going to stay clean or you know whatever, doesn't bode well for all of the post. You know complications, diabetes and you know you've got to protect your liver and all this. And two, I just don't think that they have the same results like the same relief results as someone who has the kind of recurrent acute pancreatitis, chronic pancreatitis picture.
Speaker 1:That makes sense, yeah, and it just it sounds so painful, so, so, so painful.
Speaker 3:Yeah, I'm like why did I refuse pain meds that first time? I'm just like silly me Cause.
Speaker 1:How many times have you know you've been in a medical situation where people say that you know it's there's maybe some medical gaslighting that has happened that you've witnessed in the past? You know, like there's that these are the bags we carry with us, right?
Speaker 3:You know so there's probably what's crazy is that, like I've been very fortunate to have had good experiences with most of my doctors and I don't feel like I carry this burden of having being gaslit a bunch of times which I feel for people who are. I feel like part of that is that I'm able to advocate for myself in a certain way because I have medical knowledge that maybe someone who didn't have that background just doesn't know the right things to say or the right things to ask or the best way to advocate. So I do feel thankful that that's been my journey, that I have, you know, had really good care. But I think that just the stigma of oh well, they see me, I'm like a 25 year old, like you know, single girl who like, does like to have a drink here and there and whatever, like I think I had that in my mind that they were just going to pin me as like she just wants pain meds.
Speaker 1:I don't know. Yeah, I can understand that very much. Yeah, there's definitely times where I've kind of been like no, no, I don't need that, it's fine. So I would imagine that having the background as a registered dietitian has been incredibly helpful, as you've had to deal with this pancreatitis and also your celiac and also ulcerative colitis and now diabetes and how you're changing your diet. All of these have dietary like kind of conundrums, I would imagine. So talk to us about how, like how have you figured out your diet now?
Speaker 3:Yeah, it's been an interesting journey because I was ballerina, which I didn't mention before. I think you knew that, alicia. But you know I grew up with kind of a hyper focus on appearance and, you know, eating and all this up with kind of a hyper focus on appearance and eating and all this and so kind of had some disordered eating patterns as a teenager and decided to go be a dietitian because of some of that. And then when I was diagnosed with celiac, it was just kind of like, oh well, maybe I can help people who have the same issues that I do. And so when I was diagnosed with celiac, obviously that was 2004.
Speaker 3:So it was before gluten-free was cool. It was before there were any like really good products, before restaurants really catered to it. There were like a handful of restaurants that you could go to that had a gluten-free menu. Aside from that, I sat in a Chili's and cried when I was like I think I was doing a college tour or something and I was like mom, I can't eat anything except chicken. And, like you know, just had a moment and it's it's interesting navigating it. I know this is not what you asked and I'll get back to what you asked, but navigating it as a mother with a child now that who's four. She was diagnosed when she was three and that was because I pushed for early screening. Just seeing moments in her that I'm like it's appropriate for her to sit there and cry and like throw a tantrum because she can't have something that someone else can have, and I'm like, why? Like that's how I feel, but I'm an adult and I can't do that and so it's just interesting navigating that and she's done amazingly well, I will say, as a you know three and four year old to be able to tell people I can't have gluten, is that gluten free? And I mean it's kind of our little thing. She's like me and mommy have to eat gluten free and you know it's just very sweet. But just seeing that in your own child it kind of like makes your heart break and be like, oh man, I just I want life to be easier for her and so I'm hoping that catching it early she won't have this cascade of multiple autoimmune conditions, cause that's you know, when I was researching stuff, that's part of it is, you know, if you catch it early, hopefully it doesn't cause more damage and cause your body to attack more, more things.
Speaker 3:But back to what you asked. It's been a challenge because celiac's gluten-free, obviously, and then pancreatitis was low-fat, and then I did the low-fat thing and I was eating mango sorbet for months because I couldn't tolerate anything else and that's why I was losing weight like crazy. And I mean I look back and I was like Skeletor, just not a good look for me. It was like not great.
Speaker 3:But then, getting on the right enzyme doses, I was able to incorporate more fat back into my diet and eat more regularly as long as I took my enzymes. And then I did well with it for years and I was able to, you know, even have a drink here and there without like causing a flare up and just everything, in moderation of course, have been strict gluten free this whole time. And then really the next changes were actually when I was breastfeeding my kids, because I had two out of three that were dairy sensitive and so I cut dairy out when I was nursing them and that actually I probably shouldn't eat dairy. Let's just be real, because you know most people don't tolerate dairy well, and I do feel better, but I love cheese. It's really good.
Speaker 2:So I went dairy. I'm sorry, you can pry the cheese out of my cold dead hand, Right, I'm like you know it's not happening.
Speaker 3:I'm like, oh, we just got cheese back in our diet, let's not take it back out again. So it's been a journey with that and I mean I've helped a lot of friends who actually have gone through similar things. I mean it has nothing to do with IBD, but you know, nursing their babies who had, like you know, cow's milk protein intolerance and be like, hey, these products are great, these aren't, you know, try this. And so just knowing where to look for things and there's so much out there now that it's gotten so much easier for gluten-free, dairy-free, egg-free, soy-free, like everything you can find something. And then once I had to add the diabetes into the picture, like I didn't have to, I had to learn. You know I still look up carbs on certain things, but I didn't have to learn the concept of counting carbs. I'm on like a, an insulin pump that is very smart, but you still have to put carbs in it. So you know they do have some insulin pumps out now that they kind of the endocrinologist will set up and you know, you put in a typical meal for me, a higher than typical meal for me or a lower than typical meal. That's like someone who doesn't want as neurotic control like I do. My endo told me that I need to just kind of relax a little bit, but my A1C is normal. I'm living my best life over here, counting my carbs and eating a normal diet, though.
Speaker 3:So, like, I take my enzymes and I take my insulin, and I do have sugars that go too high and I have sugars that go too low, and I'm still navigating that, because I have the weird part about the surgery I had is I have the islet cells that are in my liver that are doing whatever the heck they want. So some days they're like I'm going to pretend to be a pancreas today, and some days they're like I'm lazy, and so my insulin needs are very variable. And so I actually got COVID a couple months ago and I needed like three times as much insulin, and thankfully I knew that that was a potential to happen and I just changed my settings and rode through it. But even since then it's been a little higher than it was before that. And so illness, surgery, getting steroids as a pre-med for Remicade all of those things affect the amount of insulin I have to give myself.
Speaker 3:Steroids make your sugar go super high, and so I've got different settings on the pump and like I've learned all this how to navigate this really with the help of that podcast and then just kind of doing it. But being a dietician, I didn't have to learn the concept of like this is a carb and this is a fat and this is a protein. So I don't know how people who don't have that background manage that on top of recovering from surgery and they do it. I'm in a group with a bunch of people who have done it and they do well with it. But I feel blessed again that like I didn't have to navigate that on top of everything else.
Speaker 3:So God has a weird plan and I never thought I really didn't think that my pancreas would come out. I thought it would be my colon. You know, like, when you think of what organ are you going to have removed in your life, you're not like my pancreas. I had my gallbladder out at one point in the whole process I didn't even mention that. But like who has their pancreas removed? Like you tell people that and they're like you can't live without a pancreas. Well, apparently you can.
Speaker 2:I was told early on that I couldn't live. I must be wrong. I couldn't live without my colon, and at that point I had not had a colon for like 10 years. So like, oh, no, no no, you must be wrong. You must have misunderstood your doctor. I'm like OK, yeah, yeah, you're like check it.
Speaker 1:Yeah, all right, sir, stay in your lane. Thank you, stay in your lane.
Speaker 3:The worst is seeing people talk about how they'll get like CT scans after having this surgery that I had, and sometimes the radiologist will even comment on like the pancreas looks normal and they're like there's no pancreas. And then they're like, did they not take it all? And you know, I think that sometimes we know not to throw them under the bus, but you know, sometimes we rely on kind of just like form. You know, this is what I typically say and like if you're not aware that that was done, I'm like you gotta see that it's not there, right?
Speaker 2:I don't know did. Did you even look? Did you even look? Whenever anybody when I say anybody, I mean a medical professional, whenever I have test runs now and they're like, oh, that looks normal. I'm like normal for who? That's my first question Normal for who? Do you know what is normal for me? Is this normal for the average 50-year-old man that's 6'2 and weighs 185 pounds, or is this normal for me?
Speaker 1:Julie, did you get to see your pancreas when they were?
Speaker 3:done. I have a picture of it. I didn't get to like actually see it because so they take it. The surgery is kind of in two stages. So the first stage they're dissecting everything out very carefully because it's all like plastered from all the scar tissue and all that Lots of vasculature, arteries, veins. You know they got to be real careful, so that part took like seven hours or something. And then they hand it off to the lab that actually takes it and, like in layman's terms, blends it up and then puts it in an IV bag. And then they actually so they like kept me on the table under anesthesia but I was just kind of hanging out there for a while while that process took. And so they they extract the islet cells and then they bring them back and then they put them in through your portal vein, so your vein that goes into your liver, and so it just uptakes into your liver and they just kind of seed throughout your liver and then they make their self cozy and you know, there they are.
Speaker 1:So it's like a smoothie for your liver, Like wow.
Speaker 3:Yeah. So I saw a picture of it and I mean it, it looked pretty like scarred and he said it was very difficult to get out. So I mean, I guess it was like validation that I did the right thing, because let me tell you it was a lot of pain, the incisions from like the bottom of my sternum to my belly button. So I make jokes that I had twins and a third child without a C-section, no scar. And here I am getting a full, you know up and down vertical scar, which it's fine, it's faded out, but you know it's a battle wound that's hard to recover from, though that's a big scar.
Speaker 3:And then lifting restrictions. I mean, we had, thankfully, a lot of help from both my parents and my husband's parents. They kind of manned the fort on this side of town with my kids and my husband and then my mom kind of manned me and my dad came in helped out and my sister came. It was a joint effort to keep everything afloat, because I was in the hospital for two weeks, went home to my parents' house for like five days and then got readmitted for another four days because I had kind of just some post-op complications. And then I think I finally came home about three weeks after surgery to my family, but I couldn't lift anybody which. I have little kids and they always want to be picked up. So we had to employ my in-laws to kind of help out when I was on duty because I couldn't pick up my at that point very young two-year-old, you know, not even two at the point. Yeah, so it was a it was a joint effort.
Speaker 1:And it's not like two-year-olds are like super reasonable either. So it's not like you could be like no, I can't lift you up because of this. And she's like yeah, of course, gotcha.
Speaker 3:Thankfully the twins, I mean they could understand and they still say you know? The other day I went to my neurologist about my migraines and my daughter was like is he going to cut your head open? It's like no, every doctor I see doesn't cut me open, honey, it's okay.
Speaker 1:Last time I I checked. That's not the treatment for this, but yeah, yeah, I hope.
Speaker 3:I told him that and he laughed because of course he's a neurologist, not a neurosurgeon. He was like, yeah, no, I don't do that oh, that's, very funny, yes that is I love it
Speaker 3:out of the mouths of babes, yep, and they play doctor all the time and they like lay down and they're like okay, I'm gonna cut you open to like most kids don't have that like. At least they're like okay, I'm going to cut you open, like most kids don't have that Like. At least they're working through it right, like they're kind of processing it.
Speaker 1:I mean, I think that's really sweet, that they like they want to be part of it and it's nice for them to get to that. You probably are like you know, have tiny little doctors or PAs on your hands yeah, probably.
Speaker 3:My daughter who has celiac. She so invested my daughter who has celiac. She had to have another scope the other day and she was a rock star, like perfect. You know she just she went in there, she didn't get nervous, like I kind of talked her through everything and the nurses were all like wow, she's doing so good. You know, they have child life, come in who kind of helps talk through everything. And she did great.
Speaker 3:And you know she had a pH probe placed and so she had to come home with like a little pH probe in her nose and she didn't touch it and she kept it in until the next morning. I was really proud, like I hate that she has to go through it. But you know I think that it's helped kind of relay a sense of calm with. You know, medical professionals I mean obviously I work as a PA in pediatrics and so I see my fair share of kids who are traumatized by us and who hate us, and so it's nice that at least I've kind of relayed some calm with them with going to the doctor, remind me what you specialize in.
Speaker 1:What part of pediatrics are you working in?
Speaker 3:I'm in pulmonology and so I work with lung disorders. I'm actually switching up. It's kind of full circle. So when I worked as a dietician I worked with the cystic fibrosis but I also worked on the trachevent unit. So kiddos who have tracheostomies and are on breathing machines and I am actually in June switching back up to exclusively be on that floor. So still within pulmonology, but just a little bit more specialized. There've been a couple opportunities to work in GI and I've said no thanks, I have enough of that on my own, like I need to separate personal and professional.
Speaker 1:So yeah, we've talked to a few people now that work within like the medical, different parts of medical profession and yeah, they've had to. Some of them have had to step away and say like either they're like I'm not at all interested in that because, you're right, it's such a big part of my life, or it was such a big part of my life, and some of them are just like, yeah, no, I think you know I need to step away from this and do something else. It makes sense.
Speaker 3:I mean, I think that I would be like the perfect fit for that, being a dietitian and a PA, but I just I've kind of always felt like I would probably not have a very objective viewpoint, and so I think that it's. I mean, don't, don't get me wrong, I still deal with a lot of GI with my patients. You know, most of my kiddos, especially on the treatment unit, have G-tubes and you know, there there's various different congenital things that they're dealing with and whatnot. So we kind of cross, crossover a lot, but it's just enough. You know, I think it's good to have that, that distance from it professionally, kind of talking into the mental health aspect of it, because I think that that's important to share too is that in this last year, I mean, I've dealt with insomnia, I've dealt with anxiety, I've dealt with a lot of like I guess you would call it like PTSD, like medical PTSD, even though, like, inherently, I'm a pretty like chill person.
Speaker 3:And so I've had to go down the route of like trying different meds for anxiety and then, oh, guess what, these are all causing diarrhea. So that's real cool. And so having to go through, like various different med changes just to find something that didn't cause GI problems and I'm like I can't be in the bathroom when I'm already in the bathroom all the time, and it was like not to be TMI. But it was like even worse than some of my baseline and I was like I asked my GI and he was like I don't think it's the medication. And then, like lo and behold, I stopped it and it got better and I was like it was the medication, you know. So I think, just as a medical professional too, like kind of keeping that in mind, that like even if it's a rare side effect that it does happen, you know, to certain people, and so I've had to kind of go through that route.
Speaker 1:One of the things you talked about that I want to kind of come back to is also talking about going to PA school and not getting an accommodation.
Speaker 3:Which an accommodation, which is interesting because I had accommodations during PA. Yes, that was completely absurd. Like my time hop pulls up the picture every year. That was like endoscopy in the morning past Donosky in the afternoon and I'm just like why did that ever happen?
Speaker 1:Like I'm shocked. Yeah, I'm really shocked.
Speaker 3:I don't know, I don't know how that happened, because I did have accommodations. I mean I had like special extra time, extra bathroom breaks, you know, things like that Pretty standard. But got to sit at the end of the row, you know, so I could get out easily.
Speaker 1:That kind of stuff those are easy to accommodate and something else is not, and so that's why I don't know. It was a mess, but I got through it. Both patient and professional had on this one. There are medications that are coming out for celiac disease and that are supposed to sort of help in the off chance that you get cross-contamination things like that. Is that something you've considered? Or is it one of those where, like, you've hit a reasonable homeostasis with the rest of your treatments and you manage your diet really pretty well and you're just like, if it's not broke, don't fix it, you know?
Speaker 3:I see the trials and I have always been like cool, I'd like to be part of that. I get excluded because I have IBD, so I've been interested in it. I think that I would probably let other people try it a little bit before me and see how it goes, but I am excited for the potential that maybe my daughter could have a future where she didn't have to limit her diet. I don't know if it'll get to that point, you know, in her lifetime, but it's cool what they're doing with different gene therapies and stuff. When I started as a dietitian in CF, we had kids admitted all the time into the hospital with respiratory infections, flares, poor weight gain, things like that. And they have come out with various different CF medications now that actually alter the sodium channels that are defective in CF and so we have hardly ever kids admitted now. And it's literally been in the 10 years that I was out of that world.
Speaker 3:When I lived in Tulsa I worked in brief, stint and cardiac because my job kind of fizzled but brief, stint and cardiac and then I did pediatric ER for a while and so I was out of the pulmonary world and then when I came back to DFW I went back, I did urgent care for a year and then came back to pulmonary and I was like talking to the doctor, the medical director, and she was like, yeah, we hardly ever have CF kids admitted anymore. And I was like that is so cool. And so that's literally been. I left for school in 2014, came back here in 2022, rejoined pulmonary in 2023, 10 years and they have made that much progress. And that's like I mean the CF Foundation like does a lot of research and stuff, but it's not huge. There's probably not a lot of money that anyone's giving them, you know. So that's just cool for that, obviously.
Speaker 3:But like the thought that that could translate for IBD and for celiac and for all these different disorders that are genetically linked. I mean we know that it's a little harder to pinpoint with IBD, celiacs more specific, but cool to think that, like in her lifetime that could happen. So I mean I'm so used to it now that it's like maybe you know it'd be really nice to have a really nice piece of bread, but I mean that's probably the worst thing still is the gluten-free bread, but everything else is pretty reasonable. I mean we eat mostly gluten-free at our house. My husband tolerates it. He doesn't really seem bothered by it, so he has his loaf of bread and some tortillas, and aside from that it's mostly gluten-free.
Speaker 2:Julie, thank you so, so much for coming on the show and sharing your story. I know that it is going to help so many people, but unfortunately, it is time for me to ask the last question, and that is what is the one thing that you want the community to know?
Speaker 3:I think that kind of my, my standpoint is that, like it doesn't define you, you can still do things that you love. And I mean I've been thrown, as you heard, so many roadblocks along the way and I still managed to have a career and a family and just don't let it, I guess, get you down like in a pit, because it's very easy to do that. I mean, I had moments where I was like what, what is my life? What am I doing? Why? You know why, why me? You know you can get in that. Why me my life? What am I doing? Why? You know why, why me? You know you can get in that. Why me? Moment, or very long moment, and you just got to kind of pull yourself out of it, because if you sit there, everything else becomes way way worse, including your, your symptoms, and so just kind of keep moving forward. It's all you can do.
Speaker 1:Yeah, I do think that's really easy, but I also think that is that is the time when you do reach out for community and you say you know what. I need to talk to somebody now. I need to either get therapists potentially to help with this or I need to reach out to friends that understand and, you know, get some support at that time, because sometimes it's like it gets real dark and it's real tough to pull yourself out, and so people can help you. You can get a hand up. I think, to help as well, for sure, absolutely. I think to help as well, for sure, absolutely, julie. One question that I forgot to ask you, that I intended, is what is the name of this podcast that you were listening to the Diabetes Podcast so that we can link to it?
Speaker 3:The Juicebox Podcast. It was started by a dad of a child who is now a young adult who has type 1. And so it is a massive community. They have a Facebook group and a podcast, and he churns them out like almost every day. It's insane. That's like his full-time job, though, so he's not. He's not doing other stuff, but he has. I'm actually going to record with him in the fall, so it probably won't air until I don't know, next year or so, but yeah, it's been very helpful, so it's awesome.
Speaker 1:Awesome. Thank you for sharing that. I will make sure I link to it down in the show notes, so if anybody is looking for this and that sounds of interest to them, please do look for that. Julie, thank you so much for joining us. Thank you everybody else for listening, and cheers, cheers, cheers everybody.
Speaker 3:Hi, this is Julie. If you hi, this is julie. If you enjoyed this podcast, please rate, review and subscribe and share it with your friends.
