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 Amanda- founder of BeWell!
Amanda Phillips never imagined her lifelong battle with Crohn's disease would transform into a business helping other people living with chronic illnesses. But after decades of unexplained stomach pains, missed diagnoses, and learning to navigate life with IBD, that's exactly what happened.
Amanda takes us through her journey from childhood stomach aches dismissed as "just constipation" to her eventual diagnosis at 17. We explore how she learned to identify her personal flare triggers—stress and GI bugs being the major culprits—and the profound anxiety this created around situations most people take for granted, like commuting to work or being around sick family members.
The pandemic became an unexpected turning point in Amanda's health journey. Working remotely eliminated the bathroom-related stress of her daily commute. When her company pushed employees back to the office, Amanda fought for accommodations, facing frustrating resistance from HR despite documentation showing remote work improved her health and performance.
The birth of Be Well came during a February 2022 hospitalization, when Amanda found herself freezing in a standard hospital gown. Looking around at the medical wear available, she thought, "I can do better than this."
What makes Amanda's approach unique is her commitment to meaningful design. Every Be Well product—from symptom tracking journals to discreet pill holders to comfort items with inspirational quotes—comes from lived experience and continuous customer feedback with a focus on prioritizing patient comfort, dignity, and practicality. Now she's expanding into new territory with hospital gowns, non-metal MRI hoodies, and more innovations.
Whether you're living with chronic illness or supporting someone who is, this episode offers inspiration in turning personal challenges into purpose and creating solutions that truly understand patient needs.
Links:
- Link to the BeWell website
- Link to BroGlo
- Information about IBD and work- Crohn's & Colitis Foundation- USA
- My guest co-host, Stacey Calabro's episode
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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 Amanda Phillips. Amanda is living with Crohn's disease. We talked to her about being diagnosed and how, when she looked back on her childhood, explained a lot of the symptoms she was experiencing. We talked to her about work, accommodations and what she requested, and then we talked to her mainly about her company that she formed called Be Well. Be Well is a company that offers all sorts of products for people living with chronic illnesses, but they're probably best known for their IV hoodies, which include some strategically placed zippers, perfect for the times that you need to go into the hospital or you need your infusion. Enjoy Cheers. Hi everybody, this is Alicia. Welcome to Bowel Moments.
Speaker 2:I'm your co-host, your temporary co-host, Stacey Calabro, Joining us today. We are so excited to talk to Amanda Phillips.
Speaker 1:Yay, amanda, welcome to the show, hi, thank you for having me, so, Amanda welcome to the show.
Speaker 2:Hi, thank you for having me. So, amanda, are you drinking anything? And if you would like to share, please tell us what you're drinking.
Speaker 3:Oh God, I am literally drinking water. But if it makes it any more exciting, it is on the rocks, and part of the reason for that is somewhere behind me I have a five-year-old throwing up. Reason for that is somewhere behind me I have a five-year-old throwing up, so I do not want anything else in me tonight.
Speaker 1:Totally fair, that's totally fair, goodness. Well, stacey, you're still at work, so I'm assuming you are also probably not imbibing with me.
Speaker 2:No, I had to go for the Gatorade. We're still on. We're on year two of softs and liquid.
Speaker 1:I'm sorry, that's okay. Well, okay, I guess I'm drinking alone tonight, which is not the first time that's ever happened on this show, but so I am drinking an Aperol Spritz. So next question for you is tell us your IBD story. What brings you into our community.
Speaker 3:I mean, how much time do we have? Because this goes back to probably almost toddlerhood. I grew up with frequent stomach aches and I am one of four kids, so I was the only one who complained of stomach aches all the time, like it was my norm. And as a child like when you don't know any different you don't know how abnormal it is. So looking back now, it's like wow, like I feel bad for my younger self and like what I went through. And I look back now and realize that I actually had anxiety from it, because I had such frequent stomach aches and, for whatever reason, I always felt worse at bedtime and I always kind of dreaded falling asleep and wondering if I'd wake up at night. And I always kind of dreaded falling asleep and wondering if I'd wake up at night with a stomach ache, wondering if I'd wake up nauseous, if I'd have to sit in the bathroom. So looking back now I'm like wow, that anxiety like like that's what I had, like I was scared to like lay in bed and worry if it was gonna be a bad night and it kept me up, it made it harder to fall asleep and I remember thinking like everything under the sun, like God's punishing me I don't eat my fruits and vegetables and wondering, like, how do I make it better? Do I need to eat differently? And I think I've complained about it enough that my parents would listen to me once in a while about it and my mom would take me to a doctor here and there. And I remember being on vacation once, like maybe down in North Carolina, maybe the outer banks and I remember my mom taking me to like a I don't know if it was like an urgent care or for doctors down there hospital and complaining that I was having stomach pain. And I remember like they did an x-ray or something and they never found anything on imaging and they always chalked everything up to constipation, gas pain and I think one of these places they even tried to fix it via giving me my first enema as a child and even that was like I got to do what, like we're in a doctor's office here and stuff like that.
Speaker 3:So like growing up constant, like constantly stomach problems stop, constantly worried about it. And it wasn't until, if you want to fast forward, till my senior year in high school. I was having a different pain. It was like an upper stomach pain and it was almost like every day. Sometimes it definitely seemed like it was after I ate and something else was going on at the same time where my period shut off and I never specifically mentioned that to my mom because I was like this is great, I don't want it back. And it was like six months and of not having it. And then I just remember something was very interesting.
Speaker 3:Timing was, I think my dad switched jobs and he got a new plan and that plan with their medical coverage required or wanted kids to get blood work or something. And I'm thinking like my whole life, like 17 years, I never got blood work and now I have to get a needle in my arm and I was freaked out about that. And I remember getting some of that back and seeing abnormalities on there like low iron and other things, and so you piece that together. I was also coming home every night from my senior year in high school, tired. I would come home. I remember I would lay on the couch, maybe get up for dinner, lay down the rest of the night, and I remember there was like frequent fevers. So after so long of this going on, I got to another point with my mom where she's like all right, we're not waiting for a doctor appointment, I'm just going to take you to the emergency room. Looking back now, like heck, yeah, like fevers every night your child's sleeping, like I wish it went sooner, but I guess by time we went I went to the, a local hospital, and they did their typical imaging and the blood work and they said you have pancreatitis, your pancreas is enlarged.
Speaker 3:Um, I believe the things that your pancreas secretes is amylase and lipase. And to measure what was being secreted, they were off the charts, like if normal is under 20, they were over a thousand, like something like that crazy. And they're like we can't treat you here. Would you like to go to Philadelphia or the Hershey Medical Center? And so another thing I was like great, I'm another medical bill for my parents and what's going on with this now? And I had to decide which one I go to. And I was like I'm not a city person, so I don't want to go to Philadelphia, like send me to Hershey. So I went to Hershey and I was there.
Speaker 3:I went, I think I went first to the ICU, then eventually was in the room. I think I was there for about a week, couldn't eat the whole time to like calm down the pancreas and I remember them using that term at the time idio, something meaning they couldn't determine what all my problems were from and they left me with also perplexed on why I didn't have my period. So they're like thinking internal bleeding somewhere, like period shuts down, trying to save those nutrients for your body that needs them. Maybe I'm bleeding so, they said they. They left me out with a script to get a colonoscopy, endoscopy. So just another traumatic event for 17 year old had to go schedule one of those prepping for it One of the worst things ever doesn't get easier Five, 10 colonoscopies later. So they did that and I remember the doctor said afterwards like it looks like Crohn's and in my head I just jumped on that looks like like. I felt like they did not say specifically it is. It's almost like it was left me wondering like is it? Or like am I going to get better? I remember the first thing I asked or was thinking was like is this going to shorten my life expectancy? So as like a 17 year old? That was my first thought and then my second was probably just being worried that I'm just a medically expensive child at this point and feeling bad for that. So I got on at the time mesalamine, pentasa, and I was on four pills at least twice a day, at least something like that felt like a lot, maybe it was eight pills, and then I stayed on that.
Speaker 3:I went to college. Luckily, college was like mostly remission for me, so I didn't have many issues there. I think I was really leaving high school trying to follow protocol, trying to eat a little better, and then I had my next flare that landed me in the hospital probably a few years after college, when I was actually working in career life, and so that was a different experience, actually having to call out of work to be in the hospital, and and then I think I had like a good nine year stretch without a hospitalization until one of my last two recent ones. I had to like about two, one or two years apart. So yeah, that's recent ones. I had two like about two one or two years apart.
Speaker 1:So yeah, that's that's the journey of my Crohn's disease. Oh wow, that's a long time it's. I mean it's remarkable to think that that was going on for so long and like no answers. If you don't mind my asking what were the things that exacerbated? Like you know, you said you had a couple of flares. Was there something like that happened during those flares? Was there anything associated with it?
Speaker 3:So I 100% believe stress will trigger a flare and I don't know if there's proof behind that or not, but I actually had been living with a roommate who up and walked out of our lease so I had to be put on the spot to find someone to replace them. They just left and I think all the stress from that and dealing with that roommate put me into that flare. So that was the one hospitalization. And then the other thing that I think sends me there is I swear there's something about getting GI bugs that trigger flares for me, and the last two were post, like kids were throwing up at home from like school daycare and then I caught it and then it was just a different kind of pain and I'm like like I want relief. It like if you want to go to the hospital, like you want to get that morphine or the anti-nausea and you just want it to stop that it's that bad. And so those last two GI bugs were the other things that sent me there.
Speaker 1:Gosh, let's all knock on wood that whatever GI episode that's happening at your house right now is not something that you catch, because, yikes, that's got to be anxiety producing too. Like every time your kid is sick, you end up potentially needing to go to the hospital.
Speaker 3:Yikes. Yeah, I think that's probably why I'm borderline actually having a phobia about throwing up and a lot of people don't understand why I avoid like the plague anyone with a GI bug and I will not go to their house for a minimum of 14 days after. I don't want them at my house. I avoid it so much because I think for my body throwing up is an ordeal Like sometimes I literally hyperventilate during the process, like I. I tried to describe to my doctor what I was happening. They're like I think you're hyperventilating, like you're so worked up about it that I feel like my hands locked up and I was the breathing it was too much and I felt like tingly and so now I try to concentrate on slower breathing so my body just doesn't like it. I it's a huge process to throw up. So even luckily if my husband's around, he knows to be on like the throw up duty of the kids, just because it'll just trigger anxiety even before symptoms would actually happen. So yeah, I try to avoid it.
Speaker 1:Oh God, throwing up is so awful, but having that type of visceral reaction to it is so different and immobilizing, I think, in so many ways. One of the things you wanted to chat about was talking about work and how you were impact, how your Crohn's impacted your work. So do you mind giving us a little download on that?
Speaker 3:I think really, the whole COVID 2020 brought out work accommodations a lot for people and I never sought one. But it's all that stuff in hindsight again of looking back, what I dealt with to get to work and at work and not realizing like I could have asked for a medical accommodation and then, by time, covid had brought medical accommodations to light. I actually, when COVID ended and they wanted to call people back to the office, I sought out a medical accommodation for my Crohn's at that point because I did a lot of research on my own on them and I'm going to don't quote me because I'm just going to paraphrase, summarize this as what I remember, and it's already been a few years, but something to the effect of if it doesn't cause your employer a hardship and it's not impactful to the job, then they're legally required to provide that accommodation. And I'm like, okay, during work from home COVID, I was promoted. I was doing some of my best work ever. I got a bunch of certifications online with my job and my boss at the time would have given me any good word that was needed and he my current, my boss then very much supported the medical accommodation, which is what I wanted was just to work from home because it alleviated so much anxiety and anxiety triggers so many symptoms. So what I didn't realize is that all that time that I was commuting to work.
Speaker 3:So some of the symptoms I have with Crohn's is urgency and I know that's very tightly around anxiety. So I probably have a good 20 minute commute to my previous job and I was there for 17 years when I and when I did leave. So during that commute if I got anxiety or if I got symptoms, I would need a bathroom very urgently, to the point I'd have to stop up to three times in different bathrooms, gas stations, just to get to work. And I'm like no one knows this at work. No one knows what I went through just to get to work. And or I would also move up my time and get to work very early because of it. No one knew that and it's because going to work earlier would allow me to miss a lot of the traffic.
Speaker 3:I live in a congested area, so then you get against the problem of even then there could be traffic. I live in a congested area, so then you get against the problem of even then there could be traffic. And if I still need to go. Now it's like our place is even open at six 30 in the morning to run into and I've run into some very shady bathrooms at gas stations at six 30 in the morning and I'm like thinking about it now with kids. I'm like if I had a daughter I would not want them to have to do that, going to work and like I was a business casual, like you might be wearing skirts, heels, glasses, going into a bathroom in the dark at six 30 in the morning, and I had to do that daily, weekly, just to get to work.
Speaker 3:And then at work I always had this anxiety about being in a meeting and needing to use a bathroom and it always. I felt like I was always in fight or flight and having to worry about like, leave a meeting, I need a bathroom. Everyone knows you're leaving or people know you went to the bathroom, are they aware of how long you're there, type of thing. And so I've worried about that for so long that by the time I was home on COVID work from home, after a year of COVID work from home, I had my first blood work ever since that high school blood work. That came back normal, everything in normal range for the first time my even the inflammation, and I was like, doesn't that tell you something? That I didn't have all of that anxiety, all of that pressure dealing with all of those symptoms and all I needed was to work from home and not have that affect my health. So at that time the current boss was amazing about it and he knew like I was probably working harder there than trying to get to three bathrooms and get into the office and it was very doable for my job with what I actually did. I really didn't work with people I sat with there. I really worked with people in other countries and in other buildings via teams meetings. So work from home was great for my job.
Speaker 3:So COVID ends, they want to bring everyone back to the office. And that's when I saw the medical combination I lost multiple times with and I had to go through appealing it and appealing it and I probably really pissed off my doctor because I had to use him to keep rewriting his note. They would say, well, your doctor didn't say you have to do this, or, and I'd be like, let me go get him to say that because like he was willing to help me get this and after fighting for like six months. I finally got one and it was three or six months later. They want you to go through the hoops to renew it and I'm like this is getting ridiculous. Nothing's changed in three or six months. So every like six months I had to like redo this process and I think at some point I had a conversation with them and we got it pushed out to a year at some point.
Speaker 3:And then fast forward, my employer started really pushing anyone with accommodations left after COVID to come back to the office and I had to fight with HR about it. And HR I remember the lady she was awful. Obviously they aren't really human resources, they're just bulldogs for the company. I said to her I said would you want your daughter to have to go through what I go through every day to get to work? And she's like, well, I would tell her to try. And I was like, okay, what kind of mom are you? So it's like they didn't care and regardless of my medical accommodation, they were pushing me to come back. And what they do when they want to push someone out is then they'll start giving you a bad review and then they'll find ways to make you want to leave. And in that sense I let them win. But on the flip side, I knew what I was leaving for and I was leaving for my health and I was leaving to start BeWell.
Speaker 1:It's very insidious, and I think that people you're right, people kind of assume that HR is there for you but HR is there for the company.
Speaker 1:And so I think that people you're right, people kind of assume that HR is there for you but HR is there for the company, and so I think that's sort of number one.
Speaker 1:And I do think there's a misunderstanding about medical accommodations as well, because it doesn't, you know, if you have a lifelong condition, of course, like yeah, that thing, things don't change for you necessarily, you know, but there are. I think that is one of the things about these relapsing, remitting kinds of diseases is there are times where probably you may need more accommodations because of being in a flare or whatever it is, and so there can be times where maybe for some people, getting to work or working in an office is perfectly fine for them. It's just they need access to a bathroom or whatever it is, or that there are times when they're flaring, they need to be working from home, and so I think, you know, I think that's some of the issues is that the medical accommodation isn't like well, you have carpal tunnel, so you need this type of keyboard right. So it's like there isn't that direct correlation. It's like you have to actually try and be thoughtful about the accommodation and that's not always everybody's strong suit perhaps in the accommodations process.
Speaker 2:And even with SMLA it's a challenge. My doctor, my gastro, has been absolutely lovely. He's like you fill out whatever you need and I will sign it. But there there's so many questions about like, how many days a month or a year would you anticipate this person being out? Well, one year it was six months, you know, and one year I had three hospitalizations and then one year nothing. It's, you know, impossible to estimate that stuff. But yeah, hr wants that.
Speaker 1:And he's just like I'm going to, I'm going to aim high and give you the benefit of the doubt, and he's like we're going to do like two work days a month and then, just just to give me a little bit of wiggle room, we are going to be having an episode, so there's a woman we had on the show Gosh no-transcript so I am excited for people to be able to listen to this to talk about, kind of hear your story of this and then hear from her about kind of some of the things you can ask for, because certainly doesn't sound like they handled this the way it should be handled. But I'm going to give you the caveat that I am not an attorney and so I cannot speak for legally. But it sounds like they were kind of not following the rules, because the rules are that, yeah, you're supposed to be able to say I have this chronic illness. You're not even, you don't even have to disclose what the chronic illness is. You just need to say I have a chronic illness that's protected by the ADA and these are the types of accommodations I need.
Speaker 1:And you're right, as long as it's not costing your employer major. You're asking them to install an elevator and that's going to cost them $100,000. It should be accepted essentially, and especially after working from home. Clearly you showed you can do your job. That got real weird for so many people.
Speaker 2:I really love when people like have that moment where they're like I have to start advocating for myself. That's a really important moment in our everybody's journey and it sounds like you were very on top of that and just saying like no, just saying no, is so hard for us as patients.
Speaker 2:We're just, you know, like initially, when you get that diagnosis, you're like well, okay, and like to fight and ask more questions and say this is what's working for me and this actually improved my health, and for them to deny it. It sounds like you made the best move for yourself and it sounds like that whole experience kind of helped this transition to Be Well happen. Can you tell us a little bit about how that came to life?
Speaker 3:Yeah. So the start of Be Well happened while I was still at my employer and I followed the protocol there. I had to let our company know like I'm starting something on the side, and I think the one question was is it in the financial space? Because it was a I worked at financial company mutual funds and they don't want you to be a competitor. They obviously don't want you to share information. So I'm like no, it's retail, it's e-commerce, and they're basically like I don't care and like you can have, you're allowed to do whatever you want in your spare time have a second job, whatever.
Speaker 3:So I started BUL in well, I guess it would have happened after a February-ish hospitalization in 2022. And that was after one of the GI bugs. And when I was there in the hospital, I was freezing and I rang the nurse bell to see if I could get another blanket. And when I was there in the hospital, I was freezing and I rang the nurse bell to see if I could get another blanket. And when I rang it, I of course didn't expect someone to open my door in 30 seconds, but it was becoming over 15 minutes later and it was kind of like you're already in a mental state when you're in the hospital. So something like that could just make you sad, hit you the wrong way. So I'm just like, yeah, I feel bad that I am not upset. I wouldn't describe it as upset, but just wishing it wasn't taking so long. But it's post COVID at this point and you know there's like a nursing shortage and you know that there's other people with bigger problems going on in the hospital. So it's not not like that. But at the same time it's like wow, you don't know what I wanted. And so what if it was something worse? Or what if by that time went by and I had needed help to go to the bathroom and I had just went in the bed, kind of thing. So it's kind of like that frustration of like man, I just wish there wasn't a nursing shortage. Man, I wish it didn't take 15 minutes for the nurse call bell.
Speaker 3:And it was after that that this idea of having something to wear that had full sleeves because you know the gowns are a little bit more short sleeve came to mind. Well, guess what? The first thing I didn't think to do was to create them. It was to Google them and be like should I buy one? So I remember Googling about it and I don't try to pretend that I was the first one out there. So I always have this weird feeling of if you think of something and it's a new idea to you and you never heard about it before, give yourself credit for having an idea, like just because someone else thought about it and it's also out there in the world, like I don't take that credit away from myself.
Speaker 3:So I had the idea, I Googled it, it existed and I saw two options at the time. One option was priced over $200. And I was like that's not in my budget. And then one option was probably below 70, but I no offense to either company. I thought they were both hideous and I was like I wouldn't buy either. Because one, the sleeves opened all the way up on the one that was $200. And they had these very like bold prints inside the sleeve and I was like that's not my thing and they look really weird when they're flapping open like that. And then the other one used really chunky white zippers on what looked like a gray gilded you know Walmart kind of fabric when you picture like a cheap sweatshirt, and it's probably scratchy and not cozy.
Speaker 3:So I guess you need a little bit of a backstory to my next thought. My next thought is like I can do this better, and the reason I thought that is because my husband has been, since I've known him, like. He's an entrepreneur, he has an entrepreneur spirit, he also has a day job in the finance space, but since I've known him, he's been trying to create products and have something take off, like kind of the idea of like one day to not work for the man, one day to have his own company. And his last brand ended up taking off. And now it's it's still just I still call it a small business, but they were just on Shark Tank and so there, if you've heard of it, it's called BroGlo Self Tanner for the Boys, and feel free to check out the website because all the reviews are real, they are not paid for, and I go on there once in a while just to look at them because they're hilarious. I can't believe how many guys share pictures of body parts that they tan with Broglo actually in their reviews. So it's very funny. So, of all things that he's done in the past to take off, broglo took off, and it took off because of viral TikToks. They started in 2020 and they had a case where they went viral. They sold out of like their first 200, bought 400, sold out of 400, bought 800 kind of thing, and then they just kept going from there.
Speaker 3:So in my head I was like I could do this. This could be my new day job. Let me work towards that. And so in the hospital then that February, I sat there and kind of designed and I was like February I sat there and kind of designed and I was like my first first thought to it was very siloed to my experiences and I was like, all right, I have this bucket in my car as my emergency bucket to use for the bathroom. And it was one of those emptied out ice cream pails you know from parties with trash bags lining it. And I said, well, we got to make that better, cause I put my weight on it once and cracked it and like you can't just sit on it, that rim would hurt too much. So I started designing a bucket, I started looking for manufacturers.
Speaker 3:I was new, I was leaving there on a restrict, a restrictive diet again, and I'm already probably because of Crohn's, I don't know, but I'm already a picky eater. So I'm like when you already have to narrow down your already narrow list of foods you eat. I was like let me write, I'm going to go to the store from here, make sure I have the things I can eat, like white bread, white rice, eggs, whatever. And I was like you know, I googled some of the IBD type of journals out there and I felt like everything at that time that I was looking at was either just a generic symptom tracker or some IBD specific ones, didn't get very specific in certain details, like it didn't ask if you had blood in your stool, it didn't ask if you had gas or bloating and those types of symptoms. So I sat there in the hospital and designed a new IBD journal for symptom tracking and I added your stool chart, but I also added the times per day and I added the water you're drinking and your sleep hours and I added your school chart. But I also added the times per day and I added the water you're drinking and your sleep hours and I added your mood and I added the gas, the bloating, the blood and all those things related to IBD. But personally, everything I know about medical is those are important to anyone's health. So in hindsight I wish I did not call it an IBD journal. I wish I had called it just the symptom tracker. But that was designed in the hospital.
Speaker 3:And then I said how I would make all these IV zip hoodies better. I would use a premium fabric. I wouldn't put a big fat ugly logo on it like that one with the white zippers. I wouldn't want white zippers on my sleeve. Why do I want to call attention to having extra zippers in funny places? So I would make them discreet and color matched and have a soft fabric and no funky, bold things inside the sleeves. And so I sat there, designed that. I also said, well, if I'm going to have like a crone store, what else would I want? I'd really like I would want a discreet pill holder because I go to work. I actually had pop top pills in my desk drawer at work. I'm like, but it'd be nice to just have something sit on my desk, easy access, but not be like, hey, I'm taking pills every day. So I designed a more discreet pill holder and I think those are the main things that I initially designed.
Speaker 3:And then I I didn't currently need infusions, so it was more about the hospital stay for me.
Speaker 3:But obviously so many autoimmune diseases, cancers.
Speaker 3:People are getting infusions, so that's the very main big reason people are purchasing them. For me it wasn't the main big reason, but for that I thought it made sense to have like a tote bag, because, whether it's that hospital stay or infusion day, so the totes and the blankets and I'm like, well, what's gonna make my stuff special compared to any other tote or blanket that you have? And it's the quotes that I put on my products. I feel like that really resonate with people and that you can do hard things or everything else can wait or find comfort in the little things, strengthen the journey. That's where Be Well was born. Be Well didn't have a name for a little while because I was like I know I'm going to want my logo on things, but what logo is not going to be big and ugly, resonate with people that you would actually want to wear it somewhere on your item? And it came to me because be well is what my GI doctor says to me every time we part ways. He doesn't say goodbye, he says be well.
Speaker 2:Now is your GI going to want a percentage of sales now because of that. I going to want like a percentage of sales now because of that.
Speaker 3:It's funny, because when I first told him about it I thought he it was like a nice gesture, I thought he enjoyed it. I also feel like I get that feeling from him, like like he's proud of me proud not daughter, but you know like a proud proudness there. So I did have at the time earlier on in print, like I called it like a marketing card, just like pictures of the products, and there's an infusion center at my GI office and I was like would you let these be in the infusion center? And he did so. Every time I go there I bring a couple more right.
Speaker 3:I have to redesign them, but I've printed some of the old ones out and brought them every time I have an appointment. And so I think he feels proud and that he's happy to see everything I've done. And it's nice to have that support because I'm always worried about him and or any GI doctor for that fact, because I've been avoiding the recommendation of biologics for the longest time. So I'm worried that one day they're just going to drop me and be like well, you don't want to do what we recommend. So I feel like I walk a fine line there.
Speaker 1:You started out with sort of these specific products? Have you evolved your product line based on people's feedback and people requesting it, or how have you decided on what to add to your store?
Speaker 3:Definitely take feedback. One of the things that I'm so glad I started is I have this VIP group on Facebook. It's called Be Well VIPs and the purpose of the group is to have an engaged group of people. Like if you're coming to join it, like I expect that participation you know not required, but that you want to be here, you're coming to join this group and the purpose of that group is to have a forum that I'm not just blasting on social media but a place to be like what do you guys think of this? Or, hey, let's do something fun. You guys vote on the next color Ivy Zip Hoodie, or people actually will shout out recommendations there.
Speaker 3:And one of the things that I did well I should say I'm implementing going forward is the feedback from people in that group said hey, we wish your Ivy crewnecks and your Ivy multi-access had pockets. And the multi-access didn't originally have pockets because it was a pullover hoodie and the two big arch zippers go down near like the center zip area and it's not like you could add that kangaroo pouch type pocket. So we worked with the manufacturer and I'm going to do like invisible kind of side of pockets on the future multi-axis designs and crew necks. That's something that came out of that group. Sometimes that group will feel really strongly about something like I'll put poles out there, and so it's really good to hear what they want to see next. Trying to think of an example, if they really push towards a certain product.
Speaker 3:I guess one place that social media whether it was VIP group or social media in general helped guide is going to be launching in about two months. I don't have the official name yet, but I just for now call it the MRI hoodie, a non-metal hoodie. So the current hoodies have metal in the zipper pools and this hoodie string pools. Not my need to need one for CAT scans and MRIs and imaging machines, but apparently other people do them enough that they wish they had it for those with the IV access. So we designed something that is made out of Velcro and no metal, just plastic on the string pools, and we'll be launching that soon.
Speaker 3:So that was purely social media feedback and yeah, so VIP group really helps get us to leave some fun things for them. Like I could easily pick which color we do next, but it's also fun letting a group decide, like what colors you want want to see next and one of the things that we'll be launching probably probably still this spring is our. The discreet one day pill holders that I talked about was one of the first products we had. We've had very pastel, neutral colors and we're finally going to add some brights and like. For me, I like the idea of like a neutral one for like, my desk at work, but I like the idea of brights for, like, if I'm traveling for a day and just to have something fun, to like open your purse and have like a bright colored pill holder. So yeah, I think that's where we kind of blend what we're hearing from comments of people buying versus that VIP group and social media and help guide what we add next.
Speaker 1:That is so fun. I am curious, like as an entrepreneur, like how do you start sourcing, like where you're going to get your hoodies, like how do you even start when you're starting to like build a business like this? When you said you worked in finance, it doesn't seem like this is something that you, like you just sort of you know, knew where to start looking to start and companies to work with to build design these, build them, build them, not design them. You did this design.
Speaker 3:So I think, with my husband's initial knowledge of having done it multiple times, because he did it with Brogo and sourcing, and then he's had a couple other things before, like one of the things that he had before that was glass water bottles, and so he sourced those, and funny is that I've always had a design input on all those other products, so the design part comes easy to me.
Speaker 3:But honestly, google, like you just can Google clothing manufacturers and you can just you research and say, like if you're looking for a specific manufacturer like clothing apparel, you're gonna specifically Google for that, but not just to find the manufacturer, but you're Googling the research on where is the best place to manufacture these Like for clothing in the United States the best place is probably LA for clothing, and not that I wouldn't say I can say this with certainty.
Speaker 3:But I think even a lot of the materials are still not sourced in the US from making the cloth that you're using. So there's probably no way around getting anything right now with the current infrastructure completely made in the US. But I'm sure it's feasible. It's probably more expensive, probably higher order quantities to get a price that you need to be reasonable. But yeah, it's between his previous expertise with doing it multiple times and then just Googling and research, because he never did clothing so and then it was interviewing manufacturers, like having phone calls and emailing them and asking questions, and it was kind of like who came back that seemed the most responsive and someone that if I'm going to work with them, that I can get ahold of them, and I think that was what helped us decide on really who to go with.
Speaker 2:And I love the idea of just like whenever I go to the hospital, I take my own clothes. I refuse to wear a gown, and so IVs are definitely an issue. Because of this disease, I have Crohn's you don't have any control, and so I have something that I have control over. It's like what I'm going to wear, and so like the idea of the hoodie, making it that much easier to stay warm and not have to depend on those blankets, and like they're lovely when they come from the warmer, and that lasts about four minutes, and then you know, or if I sneak my heating pad in in my bag, but then they'll get mad about it. So yes, just that. Or I've had to go get the iron infusions and the biologics and stuff, but yes, to just have some control over the situation, whether it's what you're wearing, and I love that. It just adds to my arsenal of what I have control over during the stay. So prepare for an order.
Speaker 3:Speaking of that, one of the things I've been trying to design for like over a year now and I'm trying to make myself go to the finish line for 2025 is our Be Well version of a hospital gown. So I think I have a majority of what I need. I think it's just been a little bit scared of pushing out the first version but it not being perfect, because there's so many needs people have in the hospital that I'm not aware of, so I probably really need to run it by someone that is more familiar with that. But like, for example, some of the things that I know from my own experience that I want to change is not the regular back opening where you're holding it walking down the halls, and for me, I want longer sleeves so that I can feel more warm. I obviously do not want a scratchy thin fabric. I have a prototype. It's very phase one. It was the guy trying to design it with Velcro and front opening, back opening, arms opening with Velcro Didn't love how the first one turned out.
Speaker 3:I think it needs a little bit more of a tailored look, not to make you look like you're wearing a box, you know, and so I'm working on that and then needing to get the pockets right. So offline you want to talk about anything you know about that. I'm trying to decide where the pockets need to be, because I know people have those. The heart monitors I'm not going to pronounce it right the telemetry boxes, something like that yeah, telebox, and then you'll sound super like you're in the telebox.
Speaker 3:So I know people want to carry all these things that I'm not familiar with and I just need to get pockets right and I know like you could walk down the hall, maybe you want to have your cell phone there. So I want to make sure I got the pockets. I got to try it out first too. I want to make sure, like you can lay on Velcro and it not be like I know the Velcro won't be touching you, but if it makes a little bit of a bump, is that going to be uncomfortable? So I'm still in design phase for those.
Speaker 1:Well, and I'd be curious to what, like the hospital says about that. Like, cause I know you know like they all of the gowns are laundered in a certain way and whatever, whatever and like. So it's like, would you get pushed back from the hospital? Stacey, have you gotten pushed back in the hospital for not wanting to wear the gowns and bringing your own stuff?
Speaker 2:No, Cause I think part of it was my age when I decided, okay, I have to have some control in this and I'm don't want to wear the gowns, like you said, get up. I'm usually there for an obstruction and they want you to get up and walk around and yeah, I don't want my bum hanging out. And if I'm going to have to get up, you know I always take a sports bra and usually tank tops so that they do have as much access as they need. They know, and I think also just with my age, and I'm a grumpy old nurse and I'm like this is how it's going to be and I go in and I wear a sports bra because there's no metal, so I can get my CT scan done and like I can go straight into my room and then, you know, I can do a bed bath on my own and get in.
Speaker 2:You know, if they, if they, I know how to disconnect my IV. I'm not an idiot. But you know, if you let them know, hey, I'm doing this, I'm going to get myself cleaned up and I'll get reattached, it's fine. But yeah, I've had to wear the teleboxes and stuff, yeah, so you do have to kind of accommodate, for, you know, the extra stuff. But yeah, I think the longer sleeves is good and like maybe just a slot to slide your phone in, maybe up here, where you know it's a little higher, I don't know. But I love that idea of having the pockets and just, you know, being able to move around a little bit without your bum hanging out.
Speaker 1:And it sounds like. It sounds like Stacey would like to be part of your VIP club to be able to help you with this.
Speaker 2:Frankly, yeah, and like is the thought to like market it for the hospitals or market it to patients to take to their hospital stays, or both.
Speaker 3:Yeah, I think initially it would be the patients that know like I'm going to go in, I'm going to have a bowel resection or whatever it is.
Speaker 3:Obviously it's for more than IBD. So I know I was talking earlier like it kind of started in that silo of IBD but then all the people and all the autoimmune diseases came together and I'm like this is not IBD, this is autoimmune, this is cancer, this is chronic illness. So it quickly morphed from my initial silo of thinking about Crohn's store to chronic illness store and making life easier with chronic illness. So I think it's for anyone that thinks they know they're going in for something long-term but at the same time, if, like, obviously, if you're going in for two days, like why would we not grab it too, If we have one, and then like, maybe it's in the future, like we're still so small, I operate BeWell out of my home. So in the future, if we're talking wholesale orders and having any type of contracts in the future with hospitals, like sure, like maybe hospitals will be a customer of the future. We haven't done that yet, but definitely open to it as we grow.
Speaker 2:And I wonder if, like children's hospitals, would be super into it where, if you have special design, because I have seen, I know I've seen a couple of kids that have their own gowns. I have seen, I know I've seen a couple kids that have their own gowns with you know, you know if you're six and you've been in the hospital, you know, twice a year since you were three, then you know they have their own stuff. So that, yeah, but I know that hospitals, children's hospitals, do really good job of accommodating the kids in like adult hospitals they don't care. So but yeah, I would pack that, because I pack, just like you know, the, the shorts with the built in like unders, because that is one thing I hate in the hospital is just being like out there.
Speaker 1:You know, yeah, but now I may have a new custom made gown with special pocket, so you're working on a hospital gown. Are there other things that you're like plotting or other business propositions you have?
Speaker 3:One thing that I was requested to make by a patient is they have like a port pillow, a little pillow that sits on their seatbelt and so that their seatbelt doesn't rub their port, and they're like, just like you did with the IVs of putty, like you can make this better and like obvious thing.
Speaker 3:Number one again was like the fabric choice. And this is a male using this pillow with like flowers and bows, and I was like, yes, I can do that better. And then I said, is there any other problems functionally with it? And he's like, well, honestly, it's starting to fray my seatbelt. So he thinks it's because there's Velcro that holds it on the seatbelt and the Velcro is just plain Velcro and if you can picture the feeling of Velcro when it's not sewn on fabric, it's kind of sharp, has sharp edges. So I think that's what could be fraying the seatbelt, because you get in your car, you're pulling it down to your port and get out of your car You're pulling it up when the seatbelt goes up. So I said I should be able to find a way to cover the edges of Velcro by sewing fabric around the actual Velcro that's around it. And then I also think that maybe if I have two straps instead of one, that it's going to share. That like resistance a little bit. And then obviously a more neutral fabric, like the first thing that came to mind is like blended in with your car, just like my zippers don't call attention to it. So I was like suede or like faux leathers that are black, tan, cream, gray, whatever, like car interior colors or something. So I'm going to probably go through a prototype on that. I just went through design and use the feedback from that VIP group on proceeding with.
Speaker 3:It is the one thing I hate after hospital stays and blood draws and IVs is when they put tape on my skin and my hairs and I swear to God, sometimes ripping that off hurts more than the IV itself. And I was like, okay, how can I do that better? Like, if I'm going to improve something, how do I do the tape or the bandaid better? And I was thinking like if I just had something that you can wrap that puts a little pressure and blocks blood from getting on your shirt, that's all I need to do. So I just designed like it's just the band of terry cloth fabric, so like think towel absorbent material, a hundred percent cotton, so no polyesters for anything to be allergic to, and then it has Velcro built in and then you can just now I don't think it's the easiest thing to use single handed, but there's someone that's taking your IV out, there's someone that's, you know, going to put that tape on you, so you just hand it to them instead and say, Can you use this instead of a tape? And they just wrap the band around that area, apply the pressure by just how much they tighten the band and yeah. So something very minor.
Speaker 3:I'm going to probably start being able to launch those probably this summer, and I'm just starting in one color to start. They'll be black just to hide anything and just see what people think about it. And if people have feedback, then I can improve upon it for, like the next order. And then I mean it's not a big design change, but we got feedback from people on wanting a pullover option, that is, a hoodie pullover Cause. Right now we have our Ivy zip hoodies with the center zip and we have crew necks, but they kind of wanted the hoodie pullover with no centers. I think it was like the younger crowd that kind of wanted that option and we're looking to do it in like a fabric that's very comforting and between our sweatshirt Ivy's at putting material not as thick as Sherpa, but like almost fuzzy like Sherpa. So we found some options that will make it different, besides just being another pullover. That's some of the things that we're thinking about right now, besides just adding new colors to current products.
Speaker 1:I love that. Yeah, I think what people don't realize too is like when you get infusions, the medicine is at room temperature, not at body temperature, and so that's not something people put together of that. Like you know, because it's at room temperature, it's going to feel cold once it's in you, because it's not your body temperature, so you get cold because of it, and I don't think people understand that. You know, I certainly didn't.
Speaker 2:If you have one nugget of advice for the IBD community, what would you like to share?
Speaker 3:I would say prep for your symptoms, like, take what you need with you. And I'm going to go back to me creating the urgency bucket. Before I created the urgency bucket, before I had the ice cream pail in my car, I had panic attacks in the car about not making it to the bathroom when I needed one and my hands got sweaty. I was holding it as much as I could. One time I was in a limo with people when this happened and had to have the limo get somewhere for me to go and I was panicking and I'm like, oh my God, I'm going to go in my pants with other people in this car. I think at that point it was probably post finding out I had Crohn's. But there was not an association to why I was having this like attack at this time. And if I would have prepared, if I would have gotten those anxiety meds from the doctor, if I would have brought a change of pants or underwear or had toilet paper or wipes in the car or with me, I would have probably had less likely to have a panic attack if I was prepared for situations. So for me I probably overpack now.
Speaker 3:Now I have an urgency bucket in every car. I don't travel even 10 minutes to the grocery store without it, and so that's my very IBD specific advice. But like a higher level piece of advice would be just you're your greatest advocate. Like from my story, I was probably gaslit for the first. How many 15 years of my life to. You have constipation, you have gas, but no one else is going to show up for you. Like you have to say no to something you're not comfortable with. You have to ask questions, you have to ask why. So just be your greatest advocate, because it's not going to be anybody else.
Speaker 1:That is all very, very good advice for sure, amanda. It has been such a pleasure getting to hear your story and hearing about the evolution of Be Well, and if people are interested in finding you, the link is going to be in the show notes, so I definitely want to let people know you can go down to the show notes and find Be Well, thank you. Thank you so much for joining us, amanda, thank you, stacey, for being my co-host and filling in for Robin, and thank you everybody else for listening. So cheers, guys, thank you.
Speaker 3:Hi, this is Amanda. If you enjoyed this episode, please rate, review, subscribe and share it with your friends.
