Living with Ulcerative Colitis: A Personal Journey

In this episode, Brandy Schantz speaks with Liam Robertson, an author and ulcerative colitis warrior, about his journey with chronic illness. They discuss the onset of Liam's symptoms, the emotional and social impacts of living with IBD, and the challenges faced in navigating healthcare systems. Liam shares his experience of writing a book to connect with others and raise awareness about ulcerative colitis. The conversation also touches on the differences between healthcare in the UK and the US, the role of community support, and the dangers of misinformation surrounding chronic illnesses.

Transcript

Brandy Schantz (00:00.918)
Welcome back to Living Chronic. This is Brandi Shantz and I'm here with Liam Robertson, living with ulcerative colitis, author, IBD warrior and all around great guy. Welcome Liam.

Liam (00:15.643)
Thank you so much for having me Brandy. Really excited to be on and get chatting with you.

Brandy Schantz (00:21.816)
So you're living with all sort of colitis. You're also an author. And you and I have a lot in common in how we lost so much of our lives to this disease because you also loved working out, doing the athletic kinds of things, and losing some of those was difficult. And that led you to where you are today. So tell me a little bit about how this all started for you.

Liam (00:53.361)
So for me, when I was growing up, especially as I reached my late teens, was kind of somebody who was in a mega health and fitness kind of similar to yourself, you know, I wanted to constantly push the boundaries, dieting, know, to protein and protein shakes and lifting weights and running and, you know, every day.

go in sweatsuits and run up and down hills because I wanted to have abs and look a certain way. A lot of it was vanity, know, I just wanted to look like a certain person. I that was me, was part of my ego and part of my personality as I was kind of developing in a young man. And then when I was about 20 years old, I got really unwell. I was on holiday in Spain and I came home and I had what I can only describe as a terrible stomach cramp that turned into a kind of diarrhea.

and it was quite extreme cramps, so like worse than I'd ever had before. And I remember running to the toilet and there just being blood. So was thinking I've never had that before in diet, I like bleeding. So obviously the panic sets in, like you don't know what's going on. You know, I think the instant reaction is, I'm dying. Like there's something seriously wrong with it. And then I think I went to the GP for the first time about it and they said,

you know, you've got a stomach bug from spaying on your holiday, pass in a couple of days. So a couple of days later, I had it passed, it getting worse and worse. And then it got to the point where it was so bad, like I was almost passing out with the pain. And I tried going on to the NHS website and trying to look for symptoms and do all this kind of stuff. And my partner at the time, she ended up like trying to call an ambulance, but they wouldn't come for me.

basically decided to make my own way there kind of thing. So at this point I was like, it's almost like a bit why I imagine going into labor must be like it was cramps coming on every, you know, every set period, maybe like every 10, 30 cramps and I would run to the toilet and bleed and then they would go away for a bit. So I remember jumping in my car and like placing a towel down on the seat and then running back in the toilet and then.

Brandy Schantz (02:54.19)
Mm-hmm.

Liam (03:08.08)
letting the cramps finish and the bleeding finish and then running back my car and trying to drive to hospital in the small gap of the one cramp to the next one and I only made it about couple hundred yards up the road and I ended up coming on really bad cramps to the point where I actually took my eyes off the road and I crashed my car into the curb, wrecked all my wheels and it was almost like that all the way to the hospital. I was having to take my eye off the road, couldn't even see where I was going, stopped in the car in middle of the road.

Brandy Schantz (03:16.972)
Mm-hmm.

Brandy Schantz (03:27.502)
Mm.

Liam (03:37.955)
Luckily it was quite late at night so I wasn't really busy. But by the time I got to the hospital I was in such a bad way, like sweating, like extreme sweat, soaked in sweat, super pain. And the basically said they think I had a viral gastroenteritis. So I spent about a week in hospital with gastroenteritis and upon getting out of hospital the bleeding didn't stop and they just kept telling me it some sort of fallout from the...

Brandy Schantz (03:49.25)
Mm-hmm.

Liam (04:08.048)
flung the gas round to right us and it would go away so a week had went past, I went back to my GP still not away and they said there's nothing wrong yet you're fine it's just it'll go away soon so another week had went past, I'm still not right so I went back to my GP and then they said the same so this went on for like months really and I was like look I'm sure it's not normal for me to be bleeding like from my bum like 25 times a day which obviously isn't now in hindsight but

Brandy Schantz (04:29.966)
Yeah.

Liam (04:37.168)
I didn't know what was wrong with at time and the doctors told me there was nothing wrong with me. They took blood tests each time and stuff like that but they always came back and said I was fine. Which was really strange now thinking back how they managed to get off of it but this went on for almost three years. Just constant bleeding, constant in and out of hospital and GPs. I was trying to go to work at the time on the oil rigs as well and that was like torture. The helicopter ride from where I live out to the rigs like an hour.

So trying to last an hour in middle of a flare-up was just like the most craziest thing ever. And I know now as well how dangerous it is really to be stuck in an oil rig in the middle of a flare-up in case you have some sort of rupture. But at the time I just didn't know that I had an inflammatory condition. And if it's anything to go by what my doctor said, I had nothing wrong with me, apparently. Even when they sent me for the first colonoscopy,

Brandy Schantz (05:08.578)
Mm-hmm.

Brandy Schantz (05:19.79)
Mm-hmm.

Liam (05:32.784)
The bubble prep didn't work properly and they came back and said it was inconclusive. And then I was back to square one, you know, and I was kind of like, I remember going back to my GP a couple of days later and he was like, look, we've done the scope, we've done your blood, so there's nothing wrong with you. And I was like, but I'm like bleeding like 30, 40 times a day now. Like, I was going to sleep at night with a towel like wrapped around me so that I could bleed into it and it might save me getting up and going to toilet.

Brandy Schantz (05:38.316)
Mm-hmm.

Yeah.

Brandy Schantz (05:56.334)
Mm-hmm.

Liam (06:00.272)
Couldn't eat food properly, constantly fatigued, might like headaches and run down feeling like I just couldn't operate as a human being anymore and I eventually went to a private hospital and got another scope done and the bubble prep worked really well and then he came in and said look you have all sort of Gleitis and to be honest I've never even heard the words before all sort of Gleitis. Yeah it was a

Brandy Schantz (06:20.707)
Mm-hmm.

Brandy Schantz (06:24.577)
Right.

Liam (06:26.896)
I I'm quite, I think I said this in my book, I'm quite naive in terms of health stuff up until this point in my life because other than cancer and a couple other things because of how infamous they are, I wasn't really a very health person, you know, I didn't really know about conditions and diseases, symptoms and treatments and what people went through. So when he was telling me this, I just wanted him get out of the room so I could Google it, you know, I wanted to see what it was.

Brandy Schantz (06:53.291)
Yeah.

Liam (06:54.874)
Which on hindsight is silly thinking that I would learn more from Google than I would from the gastroenterologist. Yeah, yeah, I think it's quite normal, you're right. He gave me medication to start on my salazine and you know what, I've said this before to people, but being diagnosed with a lifelong chronic illness should be like...

Brandy Schantz (07:00.416)
No, I did the exact same thing. I ran out of there and Googled Croons and said, what the heck do I have? Same.

Liam (07:19.632)
one of the worst points in your life but for me it was one of the best, was the most relieving, satisfying piece of news I've ever had because you know he could have literally told me anything there, could have told me I was dying but the relief of finally having validation and being like you know because the doctors had made out it was in my head at one point so to finally be told you're right we were wrong it wasn't in your head you've got a serious illness it was like

Brandy Schantz (07:35.202)
Yep.

Brandy Schantz (07:40.845)
Yeah.

Liam (07:47.888)
I was so happy, even in that deep state of sedation that I'd been coming out of from the scope, I actually just felt great. It just was like, finally I can get my life back. At least that's what I thought at the time, which was a little bit naive. Just from a small dose of mesalazine that I thought was going to put me back in a good place and I'd be better again. Little did I know that I was kind of the

Brandy Schantz (07:49.891)
Mm-hmm.

Liam (08:17.551)
the start of this whole journey.

Brandy Schantz (08:20.014)
And that is what makes many of these diseases so unique, IBD in general, whether you have ulcerative colitis or Crohn's disease, there's no one set treatment. It's trial and error. And you start a treatment, you hope that it works. It may work, it may not work. It may work initially, but then it stops working eventually and you have to switch to a new treatment. And it does start you on a journey that you...

Liam (08:31.631)
Mmm.

Brandy Schantz (08:49.942)
are never really prepared for unless I think you've lived with somebody with a chronic illness, you're never really prepared for how this is going to change your life in its everyday form.

Liam (09:01.039)
Yeah, I totally agree. It's such a huge impact on your life in so many ways that aren't visible to other people. You know, I realised that like, if you Google the symptoms of a disease, you will get like the medical symptoms, you will get the things that are, you know, primarily if you Google Crohn's disease, sorts of colitis, it'll mention cramps and blood and stool and mucus and diarrhea and whatever else, but it really doesn't...

Brandy Schantz (09:11.746)
Mm-hmm.

Liam (09:30.831)
tell you the other stuff, know, the stuff how much affects your social life and your career. You know, you might lose relationships and friendships and all the social awkwardness and you know, it really changes you as a person as well. You know, it's suddenly like a massive like shift in your life and it's, I think people, it's...

Brandy Schantz (09:35.746)
Mm-hmm.

Brandy Schantz (09:40.45)
Yes.

Brandy Schantz (09:50.966)
Yes.

Liam (09:55.746)
I can't put into words enough how much people underestimate the change that takes place when you're diagnosed with an illness like Crohn's or Colitis.

Brandy Schantz (10:05.632)
No, that's very true. One thing we talk about it a lot on this podcast. And one thing that we all seem to have in common is we do lose friends and we often find ourselves retreating from everyday life because I'm sick of explaining it to people. You know, I know I look great one day, not so good the next day. I understand it's probably confusing.

Liam (10:18.404)
Hmm.

Brandy Schantz (10:29.208)
But imagine being me and living with this and not having any clue how I'm going to feel each and every morning when I wake up. It's confusing to me too. But I'm living with it the best I can. I think we all go through that. And then of course the anxiety is what they don't really prepare you for because of course you develop anxiety. Nobody's shocked when I say I have anxiety or PTSD from my time in the army, but when I say, I also have it from my chronic illnesses, they are shocked.

Liam (10:35.023)
you

Brandy Schantz (10:57.494)
And they really shouldn't be, we should probably prepare people for this a little bit better to understand you're going to start to suffer anxiety, trauma. You may have some PTSD, especially surrounding doctors, because your story is very similar to my story and other people's stories where doctors don't believe you and we're always told it's in our head. And then finally, after suffering and pushing and advocating for yourself, you get that diagnosis and you do feel so vindicated.

Liam (10:57.519)
you

Liam (11:27.403)
Yeah, I totally agree. know, vindicating is the right word. It is like being vindicated totally. I think part of me felt like going back to my GP. I remember at one point saying like, told you so, because you know, like, like I remember at one point, because I don't know what it like in the States, but here I was getting a different GP every time I went, you know, wasn't the practice was the same. It was the same surgery.

Brandy Schantz (11:44.15)
Yep.

Brandy Schantz (11:52.206)
Mm-hmm.

Yes.

Liam (11:55.824)
but it was a different GP I used to see every single time I went and this one time I had the same guy like three or four times a row and I remember he kind of got like a little bit angry with me like raised his voice and he was like you know we've done the tests we've done the scopes I've told him a million times I've nothing wrong with you and I remember feeling like I went home like so upset and confused because I was like like there is only one channel that I can go to for help and that is it and now it's at a dead end

Brandy Schantz (12:16.056)
Yes.

Brandy Schantz (12:21.742)
Mm-hmm.

Liam (12:24.399)
And not just a dead end, very authoritative and abrupt dead end, you know, go home and leave, like stop coming here type of thing. It was just like, well, what do I do next? You know, I'm kind of lost. Yeah, it's really, really tough.

Brandy Schantz (12:24.77)
Mm-hmm.

Brandy Schantz (12:28.578)
Yes.

Brandy Schantz (12:32.184)
Yeah.

Brandy Schantz (12:36.643)
Yes.

Brandy Schantz (12:42.274)
And that's how, you know, we've talked about, you know, before, you know, coming on the show, you know, you start to lose trust often in many providers, healthcare providers, doctors, but that's why, because we're begging you for help and we only have one place to go. So if you're frustrated, doc, imagine how I'm feeling when I'm experiencing this day in and day out.

Liam (13:02.543)
Mm-hmm.

Brandy Schantz (13:11.082)
It does add to so much that is difficult in your life. You're trying to get back to living and this doctor standing in your way in so many ways, right?

Liam (13:19.438)
you

Liam (13:25.551)
Yeah, yeah, totally. I remember them. Like, you know, I always feel like I feel sorry because I know how busy the doctors here are. They're constantly understaffed, constantly overworked, constantly stressed, and they're trying to make serious decisions quite often without barely any sleep. Like, like I know some I know I have some friends that are doctors, you know, it wasn't unusual when they were a junior doctor coming in that they would do 48 hour shifts. Like, how do you work for 48 hours without sleep? It doesn't make sense, you know, they're expected to drink coffee. Yeah.

Brandy Schantz (13:35.479)
Yeah.

Brandy Schantz (13:49.57)
Yes.

Brandy Schantz (13:53.538)
Same here in the US. Yeah.

Liam (13:55.577)
They're expected to drink coffee and just get on with it. And then I just think, you know, how can you expect somebody who's been up for two days to make a potentially life altering decision about your health? it is crazy. Because I'm quite a compassionate, empathetic person, especially after years alone with chronic illness, I kind of feel for them. But at the same time, it doesn't make it better. Like I remember I went to my GP just during my last, when I was coming into my big flare up I had in the of 2022.

Brandy Schantz (14:18.326)
No.

Liam (14:24.78)
and I'd said to her, this is what's going on, I'm needing steroids immediately, I got some on the rig and I've been medevacked off the rig, I need Prednisone, and she was like, no, we need to blood tests and stuff first, I don't have the weeks to wait for blood tests, I need Prednisone right now, and she was like, and she was panicky about it, and then she was just, you know what she said, she said, do you take Misalzine? And I went, yeah, she goes, I'll just double your dose. Now I'm already on the maximum dose, so,

Brandy Schantz (14:38.316)
Yes.

Brandy Schantz (14:50.287)
gosh.

Right.

Liam (14:54.71)
Not only have I now potentially got a bleeding inflamed colon and now maybe will then have a bleeding and inflamed liver from the liver damage I'm able to get from overdosing on a certain medication. It was just a throw away. And I just thought to myself, see if I wasn't knowledgeable about this disease and the medication and spent so much time advocating and speaking to other people, I may just go and take that as legitimate advice and go and do it.

Brandy Schantz (15:12.652)
Yes.

Liam (15:25.134)
And when I phoned my IVD team about a week later, I told them and they couldn't believe it because it was just so ridiculous. And I was like, this is the advice they gave me. You know, I was the last patient and the surgeries meant to close at 6.30 p.m. It was like 20 to 7, quarter to 7 at night. And they were obviously, she's probably been working there 12 hours, tired, wanting home, which I understand. But was just like, I'll just double it. It was just, it just felt like the most.

Brandy Schantz (15:32.173)
Right.

Brandy Schantz (15:43.49)
Mm-hmm.

Liam (15:49.806)
like throw away poor commenters, think do you understand what I go through on daily basis? Just tell me to double a minute as if that's the solution, you know? Yeah, it's terrible.

Brandy Schantz (15:55.148)
Right.

Brandy Schantz (16:02.582)
Yeah, you know, I speak at medical conferences here in the US. It's the same. You know, I always love that I have so many guests and listeners from the UK because one thing it gives us the opportunity to do is talk about what's going wrong in our own systems. And it's always the same. We have so many problems that are exactly the same. And you start to realize that we're all just living in this and trying to make it better or just trying to live really.

Liam (16:17.646)
Mmm.

Brandy Schantz (16:32.14)
because it's the same and I always tell doctors, I'm just trying to get to work guys. I understand you have a process. I understand you're overworked. I understand that you have way too many patients. I understand that you're probably on a long shift and haven't slept in a long time, but you have to also understand, I just need to get to work. I gotta get to work. And I've had this disease for a long time. So if I say I need prednisone, I need prednisone. Now I understand that we have an over prescription problem.

Liam (16:37.208)
Mm-hmm.

Liam (16:50.478)
Mm-hmm.

Brandy Schantz (17:02.476)
Yeah, you know, if I've been on Prednisone for a year, we probably need to have a conversation. But, you know, if I have not been on Prednisone for a year and I'm coming in and I'm saying, I got to get to work, just give me the Prednisone and then we will continue to dig deep and dive in. But I got to get to work, doc. Bill's got to get paid still. Got to go. Help me out.

Liam (17:03.266)
Yeah

Yeah.

Liam (17:21.774)
Yeah, of course, of course. And we know the longer you leave inflammation without it being treated, the worse it is to treat, you know. Like, I feel like when you attack something, if you get a hint of inflammation, you attack it quickly. The severity of it is so much less than what it would be if you leave it sitting for weeks and then try to treat it. That's became quite apparent, you know, now after speaking to so many people over the last...

Brandy Schantz (17:27.555)
Yeah.

Brandy Schantz (17:32.117)
Yeah.

Brandy Schantz (17:43.63)
Mm-hmm. Yes.

Liam (17:50.622)
however many years, you better not leave in inflammation, know, brewing.

Brandy Schantz (17:57.282)
Yeah, you got to fix it now, please help. So you also decided to write a book as you've been going, you're going through this, you're feeling all the things that we all are, you feel invisible and valuable, like you've lost so much of your life and you decided to kind of fill that hole by writing a book. Tell me what really pushed you to do that.

Liam (18:00.514)
Mm-hmm. Mm-hmm.

Liam (18:20.938)
So it's an incestous story to be honest because like I said when I was younger I was you know a lot of my exercise is vanity you know I wanted to have abs and big biceps and look a certain way and I wanted all this stuff and then I got unwell and realized I maybe couldn't have that anymore and it wasn't me. I actually felt embarrassed and I felt weak I felt like it made me less of a man I really felt like this like ruined my entire life and I was so embarrassed about what I didn't tell people.

Brandy Schantz (18:30.925)
Mm-hmm.

Brandy Schantz (18:36.462)
Thank

Brandy Schantz (18:42.446)
Mm-hmm.

Liam (18:49.038)
like I kept it a secret. Like my family knew I'd be in Wellingby Hospital but I made out like it wasn't a big deal. And some of my friends I didn't tell them at all. You know, I just made out like, oh, I still make out that I was in hospital. I wouldn't say what was actually wrong with me and trying to explain it to them. And I just wanted to keep up the facade, the macho thing, like, you know, I'm a man, I'm whatever, you know? And then...

Brandy Schantz (18:58.765)
Mm-hmm.

Liam (19:15.47)
I think it was probably 10 years down the line almost that I'd kept a secret for. I started taking notes of things that had happened during my time of being a well from about 2019 into 2020. And then obviously we went into the COVID lockdown and I got really bored and I decided, because at this point it was kind of taking the format as a book, but because I'd never really told people what I'd been through, it was...

even more scary publishing a book and telling people about it because not even my close friends knew, never mind the rest of the world. I'd never engaged with people online about it, I'd never engaged with people in my life, my real life about it, you know, I'd never met another person with lights or crones and sat and had a discussion with them. So every time I had an accident, like I shit myself or I had to pull over in the car and go on the side of like, you know, the road or in the bushes or something, I thought it was something to do with my personality, I thought I was weird, I thought...

Brandy Schantz (19:39.79)
Mm-hmm.

Brandy Schantz (19:46.702)
Mm-hmm.

Brandy Schantz (20:02.734)
Mm-hmm.

Brandy Schantz (20:06.156)
Yeah.

Yeah.

Liam (20:09.661)
I was doing something wrong, didn't know it was common with the disease, I just thought it was me. Because during the whole time of my diagnosis and treatment, I'd only ever been offered medical facts, pamphlets and leaflets from the GP and posters on the wall and go to this website and that website. know, nobody ever said to me, by the way, you're going to shoot yourself one day, this is going to happen, this is going to happen. Everything was medical based and it wasn't really a relatable personal story.

Brandy Schantz (20:14.444)
Mm-hmm.

Brandy Schantz (20:23.148)
Yes.

Liam (20:35.981)
And then when I started Search for Online, it became apparent it didn't really exist in a book form that I could find at this point. So I thought, you know what, I should really publish these notes I've put together. So I kind of tidied up a bit and bit bored in my house in lockdown, had nowhere to go. And I just, you know, clicked Publish and put it on Amazon. And after maybe a couple of weeks, I had no sales. And I was like, oh, what's going on here? And then I thought, well.

people don't just click on Amazon and buy random books, you you need to tell people about it. I had no marketing plan, no strategy, no nothing. I literally just uploaded a manuscript with a cover to Amazon and then I realized I need to tell people. So I created the page, Living with Ulcerative Colitis on Instagram and I put a post on it with some relevant hashtags and my post blew up. Like I had like...

Brandy Schantz (21:05.666)
You're right.

Liam (21:28.717)
hundreds of people get in touch really quickly in a short period of time. Loads of people follow my page, started messaging me and then I told them I about the book and they bought the book and they shared it and then more people followed me. And it went from like a big secret, like a big dark secret that I wasn't telling anybody about that was like the worst thing that happened in my life to probably being one of the best things, you know. I think at this point my page is close to 10,000 followers. I've got people from all over the world.

message me every day, all from the book and connecting with these people on this online platform. And it's felt so special to have been able to tell my story in a book form and have someone in Canada or America or Australia or these places read my book and feel connected and related to me in some way and to the point where they reach out and say thank you and like.

Brandy Schantz (22:09.186)
Mm-hmm.

Liam (22:23.639)
want to be part of my community and my life in some way, it's it's, it's, to be honest.

Brandy Schantz (22:30.102)
Yeah, it's, I mean, thank you for writing a book. I mean, it's just so important to be able to reach out and know people who understand and who can tell you that you are normal because you do feel crazy. You feel like you're abnormal. There's something wrong. I think your story is just so common amongst all of us. You know, you feel ashamed. Who wants to, who wants to tell the story of shitting their own pants as an adult?

Liam (22:40.749)
Mm-hmm.

Mm-hmm.

Liam (22:59.425)
Yeah, totally.

Brandy Schantz (22:59.658)
You know, like, you just don't talk about that. So, you know, it's so important to be able to reach out and have some camaraderie in a group that understands.

Liam (23:12.333)
I agree. It really does make a difference. You know, I always say people who get it, like you have a conversation with someone who gets it. It's like instant relief. Like if you've got pent up stress and worry and sadness and fear of what you're going through and you know, all it takes is you speak to someone, you know, you think, you know, I've got people who've maybe diagnosed recently and they're having to start on immunosuppressant for the first time and they're having full on meltdown thinking.

Brandy Schantz (23:21.41)
Mm-hmm.

Brandy Schantz (23:37.517)
Yeah.

Liam (23:39.883)
you know, you can get cancer from this, I'm gonna die from this. All it takes is for them to speak to someone who's been on them all, dual biologics, multiple surgeries, like, and then they go, whoa, and then they realize actually I'm in a not too bad a place, you know? It makes them feel like suddenly better about their situation, you know?

Brandy Schantz (23:42.146)
Yes.

Brandy Schantz (23:48.289)
Yep.

Brandy Schantz (23:56.257)
Yeah.

Brandy Schantz (24:00.852)
It really does. And there's little things. And my chronic illness, my living chronic community, they get it. When I reach out and say, my God, this flu that's going around, do you still have it? Do you still have it? It's because I need you to reassure me that I'm not sick longer than a normal person because I'm on biologics. When I'm feeling something, I need you to say, no, no, Brandy, I've got that too. You know, because there's so much.

Liam (24:18.189)
Hmm.

Brandy Schantz (24:30.2)
fear of the unknown. And one thing I've noticed, and we talked a little bit about this before the show, we get to know more amongst each other than even the doctors know. We find trends before the doctors do. And that's true, you know, I, you know, if you listen to the podcast, I guess we'll say, quite famously, went through 19 months having a reaction to my Humira, drug-induced lupus.

Liam (24:45.57)
Yeah.

Liam (24:57.997)
Tracy.

Brandy Schantz (24:59.624)
And when I finally got the diagnosis, doctors says, it's so incredibly rare. It's so incredibly rare. How could anybody have known? Except I have a chronic illness community and I kept just randomly running into people. yep, my brother went through that. Yep, yep, my mom did it. Yep, yep, I had that last year. Yeah. and I thought, well, if it's so incredibly rare, why do I just randomly meet so many people in this living chronic nation who've had drug-induced lupus?

And you've talked about knowing people who have gone through it as well. So we actually, when we talk amongst each other, we can, I have found, yes, we can be annoying. I'm sure we can. We go into the doc, hey, talking to my chronic illness family and I've heard this, this and this. And now the doctor has to address all these things that you found on Google or the internet. But also we can help inform doctors in many ways because

I still meet doctors who are like, it's so incredibly rare. You're the only person I've ever met who's actually had drug induced lupus. And I say, really? Because there's a lot of people out there. It's not rare at all. And I think often we can help doctors understand what's going on in the community before they get it from a study, right?

Liam (26:08.663)
Mm-hmm.

Liam (26:16.948)
Of course, yeah. I think there was a study done here about new data coming into play, like new data being discovered and how long it takes to get to the NHS before a GP will tell you it and it was up to 17 years. yeah. So that was based on, that was the longest time for some of them. But yeah, so you pick about data now that's coming out looking.

Brandy Schantz (26:32.685)
17 years. Good gracious. Yes, there you go.

Liam (26:44.524)
For example, if you take a certain drug, this might happen and it could be up to 17 years before the GP will actually say to you, this might happen. It's crazy. I might have got that data wrong. It might be somewhere around, but it's around that. It's around that kind of time. a long, long time.

Brandy Schantz (26:54.678)
Yeah, because.

Brandy Schantz (26:59.598)
17 years, it's way too long, obviously, because if you're living with it, it's horrible. it's terrible. So yeah, we need more. Yes, yes, 17 years. I need help yesterday, not 17 years from now. I'm dead by then, guys, help me out. Yeah, it's just amazing what we can do as a community when we come together to help each other understand.

Liam (27:06.238)
Mm-hmm. yeah

Liam (27:10.636)
17 minutes is long enough. Never mind. You want to know now.

Liam (27:21.121)
Mm-hmm.

Brandy Schantz (27:29.09)
what we're experiencing. And we're not crazy. There's a lot of crazy stuff on the internet. I get it. I get it. You have to take everything with a grain of salt. anything can be put on the internet. And I can't change that. But there's also a lot of good stuff. And when we're coming together and saying, hey, guys, I'm on my tumira, or there's a whole line of drugs that can cause these things, and I'm

getting all these rashes when I go out in the sun and I can't lift my arms above my head. We're a group that could say, oh, you need to ask about drug-induced lupus because that might be what you're experiencing. you know, I mean, it could be anything. We get all the good trends. We're very good at reaching out to each other. So there is a lot of good that can come out of these communities. So, you know, that's why I think it's so important that you do the living with.

Liam (28:05.516)
Mm-hmm.

Brandy Schantz (28:26.166)
all sort of colitis book and the Instagram so that we can reach out because otherwise there's just the doctors aren't telling us anything.

Liam (28:33.994)
No, totally. Like what you just said there is a good point as well because it's something I battle with a lot. So you get the things on the fringe of research which are like new out there, trying new things that are not well studied, not well understood, that may over time make its way into mainstream data and mainstream treatment.

Brandy Schantz (28:45.325)
Yeah.

Liam (28:53.652)
What seems to happen is some people who are out there to make money will grasp onto these things or research and say, this is what you need, pay me and I'll help you do this. Even though the data isn't there to really use that. And it's something I struggle with a lot because online, especially through social media, there are so many people out there trying to make a buck off of current illness people, but without the data to back up. So let's say if you take this or you eat this or do this, I can help you cure your disease or

Brandy Schantz (29:13.314)
Mm-hmm. Yes.

Liam (29:23.616)
getting to remission and there's people out there that actually try to promote it to, you know, kind of like motivate people to come off their medication based on something someone on Instagram is telling them. Now, it's one of my biggest bugbears over the last two years because I've had full on battles with people, you know, I had one guy, he was actually based in the US who basically was saying if I followed his diet plan and his workout plan, I could come off my meds and I just was like, well,

Brandy Schantz (29:33.293)
Yes.

Right.

Yes.

Liam (29:52.749)
If you genuinely believe you've discovered some treatment that's so inexpensive and wholesome, you should go to all the charities and big healthcare providers. You will be a billionaire overnight because if you've found a cure for an incurable illness, then you have a duty to go to the news outlets and media and everybody and tell them what you've found. But you won't do that because you know deep down you're not right.

Brandy Schantz (30:09.388)
Yes. You're genius. Yeah.

Brandy Schantz (30:22.179)
Yes.

Liam (30:22.444)
He accused me of working for Big Pharma. He said that I'm liked by followers and I need to come out and tell them the truth. I'm being paid from Big Pharma. just think I'm not being paid for Big Pharma. I came off my meds at the end of 2022 under the guidance of my gastroenterologist because of complications I'd had from the COVID vaccine and I almost died. Like I went into this gigantic flare up and then spent over a year in and out of hospital. Didn't leave my house for like 14 months.

Brandy Schantz (30:46.583)
Yeah.

Liam (30:50.988)
couldn't work, do anything, it ruined my life because I came off meds. That was even under guidance of a medical professional. Can you imagine someone on Instagram convincing someone to come off their meds because of some workout program they've got? It's just insane. And the problem is it's out there constantly. I've seen guys recently selling these bed sheets that are meant to be anti-inflammation. So he said it cured his colitis.

Brandy Schantz (31:02.903)
Yeah.

Liam (31:20.662)
put this grounding sheet on your bed and it cures your ulcerative colitis. We had a recently famous social media influencer in the UK called Eddie Abbeau, ex bodybuilder guy who says that Crohn's disease can be fixed just by eating certain foods. We've had people, what's the other ones? There's quite a few good ones. there was ones to do with the hydrogenated water saying it was gonna cure Crohn's and colitis.

Brandy Schantz (31:22.892)
Okay, yes.

Liam (31:50.348)
There was maybe about a handful of things over last two years that just, it's insane. these things, the reason why people get some traction with this, because there are benefits to these things. Like if you say to someone, eat whole foods, avoid takeaways, deep fried foods and sugar, well, if you do that, you're probably gonna feel better and it is gonna be better for you. Yeah, everybody is, it's not gonna cure your illness. the chance of it, you've got severe inflammatory bowel disease, that's not gonna...

Brandy Schantz (31:52.718)
Mm-hmm.

Yes.

Brandy Schantz (32:07.362)
Yeah. Yeah, everybody is.

Brandy Schantz (32:14.113)
No.

Liam (32:19.051)
The chance of it getting to your remission is small because most of us need serious heavy duty meds. It's not because you're eating bread that hasn't got a stabilizer in it. It's because you need something more. And these people get off of it because the advice they're given has health benefits, so it looks good. But in reality, they really don't have the qualifications or medical experience to really give that advice.

Brandy Schantz (32:29.054)
Right. Yes.

Brandy Schantz (32:38.605)
Yeah.

Liam (32:49.023)
and it's a shame because people listen to it.

Brandy Schantz (32:52.162)
They do, and you know, because of course this has been happening for decades, centuries, you know, the internet gives it a better platform, you know, lets it happen easier, gives more people the opportunity to do it, but it's been happening for decades. And unfortunately, as chronic illness patients, we're an easy mark because we are desperate. We are desperate, yes, and we're very vulnerable. I want my life back.

Liam (32:57.813)
course.

Liam (33:16.203)
Correct.

Brandy Schantz (33:20.056)
When I'm in the middle of a terrible Crohn's flare, I want to leave my house. I want to go to work. I want to be able to do the things I love. I want to see my friends. And I do feel desperate. And they're very good at capitalizing on that, especially. And this is true for both of us. know, again, I love that we're able to connect in different countries and understand that we often go through the same thing. We all have a shortage of physicians.

Liam (33:35.456)
Mm-hmm.

Liam (33:49.407)
Mm-hmm.

Brandy Schantz (33:49.486)
or long waits to see a doctor for various reasons. And I'm trying to get in to see a doctor. I'm in pain. I went through it when I was going through the drug-induced lupus. And then after I came off the humero, when I still did not have my diagnosis for dysautonomia, but was still experiencing all these issues, I'm still trying to get into doctors, get a diagnosis, get a treatment plan. I felt desperate. If somebody suggested something to me and it wasn't completely ridiculous, I'd throw money at it.

Liam (34:19.648)
course.

Brandy Schantz (34:19.788)
I'd do anything. I was in pain. I felt terrible. And I knew half the time I'm like, well, this is hokey. But if it would have given me even 2 % better, you know, I was willing to take that because I was in so much pain. And they know that. And that's what's so unfortunate. And that exists on the internet. And it's very hard to sift through the noise and all of the people trying to get your money.

Liam (34:33.227)
Mmm. Mmm.

Brandy Schantz (34:48.632)
to find what really can work. you know, sometimes it is with fellow chronic illness patients where we can say, hey, this has made me feel a little bit better or tell your doctor about this. We're starting to see this trend or this just happened to me. You know, make sure that you understand that this could happen to you. But unfortunately, finding the people who are just trying to share good information and differentiate them from the people who are trying to

make a buck off of us. It is really hard. It's really hard out there.

Liam (35:23.374)
Yeah, it is really tough. It so is. And you know, even with things that do have medical studies, when on the fringe of research, you know, you don't know if when that really works its way through into either human trials or mass trials or is it going to have the same effect? Like there was one recently, there was a study done on coconut water, was done in India and basically they did and it was a double blind placebo trial. So it was it was pretty good.

Brandy Schantz (35:40.227)
Yes.

Brandy Schantz (35:50.435)
Mm-hmm.

Liam (35:53.132)
They give coconut water, I think it was 150 mils of coconut water to one group and then the control group got a flavored water and then they test them and there was a positive symptoms response for the coconut water and there was a slight clinical response in terms of fecal capotectin and CRP for the coconut water. In terms of scope, there wasn't much difference when they looked at it but there was an improvement from coconut water so that was a pretty good trial but small things.

Brandy Schantz (36:22.071)
Yeah.

Liam (36:22.763)
like they didn't tell you what the flavored water was so there's something in the flavor in the water that had something in it that irritated the guts of the control group which is why they had a lower response rate. you can look into every bit of data and research and kind of not everything's perfect so even when you say someone it needs clinical data, it needs studies, even that's not straightforward you know. That's why.

Brandy Schantz (36:41.281)
Yeah.

Brandy Schantz (36:48.152)
Right.

Liam (36:49.035)
That's why you really need to find people who are experts like medical professionals and who can analyze things and give you the best advice. Not someone on TikTok or Instagram who's needing $150 a month for some super treatment that doesn't, you know what mean?

Brandy Schantz (36:53.463)
Yes.

Brandy Schantz (36:58.422)
Yes.

Brandy Schantz (37:04.086)
Yes.

Brandy Schantz (37:08.31)
And I love how you put this because that is your, this is what everybody should be asking themselves. I think you put it very well. If you found the cure for these incurable diseases that ruin people's lives and can solve all of this with a simple diet, you would be a billionaire. So where are you? Ask yourself that, friends, when somebody says that.

Liam (37:28.167)
Yes, overnight. Yeah, it's like...

Totally. So, you know, like I said to this, one guy who came up with the thing, I remember saying to him, well, you know, the Crohn's and Colitis Foundation, they spent, they've spent roughly half a billion in the last 10 years on Crohn's and Colitis research. And it's not far off that, just a little bit less with Crohn's and Colitis UK, I think. So, they've spent half a billion on research, you're telling me you've

figured this out in your spare bedroom. It's just so unbelievable. But like you said, when

Brandy Schantz (38:05.194)
yeah yeah and they've even done tons of research with diet too so

Liam (38:11.499)
Of course they have, yeah. And you know what, there is obviously new stuff coming all the time. I know the Mediterranean diet's very, very, like it's very well suggested as a help for people with Crohn's and Colitis following the Mediterranean diet, a couple other things. surely if a company or a charity or a foundation have spent hundreds of millions on research.

Brandy Schantz (38:17.994)
every day.

Liam (38:37.707)
you're not going to figure it out before them in your spare room or your garage. But like you said, people are desperate and if you come to them and say you've figured it out and you've got nothing to lose other than a hundred bucks or whatever, the chances are most people are jumping on it, you know.

Brandy Schantz (38:40.873)
Right.

Brandy Schantz (38:44.91)
Mm-hmm.

Brandy Schantz (38:54.19)
Yeah, and that's what's unfortunate. And I understand, you know, I'm waiting to see doctors and I know that's where I need to be. you know, I'm going to ask a doctor and I love to, I love to read studies. I'll go in and start reading NIH medical journal articles all the time, trying to find, you know, what's out there that my doctor clearly does not have time to search for, you know, because there's many other patients than just me. I also.

Liam (38:57.867)
Mm-hmm.

Liam (39:08.011)
Mm-hmm.

Liam (39:14.059)
course.

Brandy Schantz (39:18.318)
you know, and this is, I think this is very important. So I always encourage people to do the same. joined the board of the Crohn's Colitis Foundation in my area, the DC, Virginia, Maryland chapter. And that's how I get to learn a lot because I'm on this board and I'm working with them, putting in the hours to do this volunteer work so I have a better understanding of what's coming down the path, what we know about Crohn's disease and all sort of colitis right now, what we may know soon, what we're trying to find out in the future.

Liam (39:27.333)
wow, nice.

Brandy Schantz (39:48.68)
It's really important because that gives you that touch point to better understand your own disease because it is important because yeah, we're all desperate. It's a terrible feeling. can't ever really fully describe to somebody not going through this what it's like to lose your entire life as you once knew it. So you do feel desperate. And unfortunately, there are always going to be unscrupulous characters and they're taking advantage too of mistrust. They're taking advantage of

Liam (39:54.901)
Mm-hmm.

Liam (40:06.763)
Yeah, it's horrible.

Brandy Schantz (40:17.454)
desperation and they're taking advantage of this time lag that we both have. And, know, really quick, you know, before we wrap up, I do want to talk to you a little bit about some of the healthcare issues you're encountering in the UK. I have a lot of listeners in the UK. I'm based in the United States. I think it's always fascinating and also very important to understand how many similarities we have.

how our systems both differ and have similarities. We in the US have a very big physician shortage, and we're looking at often six, seven, eight month waits to get in to see a specialist. What are some of your pain points right now as an ulcerative colitis patient right now?

Liam (40:58.666)
Yeah. Yeah.

Liam (41:05.098)
Yeah, this is a topic of mine I'm quite well versed on now, especially over the last year or so. So I know for a fact that a lot of people in the UK think that the health care in US is amazing because it's private and they have to pay for it, which I am well aware isn't the case. So I think one of the biggest ones for us is kind of like what you just said, we have a major shortage of medical professionals. We've got a major shortage of doctors. And this is a frustrating aspect of it.

Brandy Schantz (41:18.478)
Mm-hmm.

Liam (41:33.884)
This is the first year that the doctors who are finishing their eight years of medical school are not going to have a job. Because it's not because of of doctors, it's because we don't have the funding. And therefore, we're running out of doctors, but we don't have the money to pay for more doctors. So it's a doctor issue, but it's not really a money issue. It's a real shame. There was a guy on a radio post just recently on a

I watched on a podcast, he called in like a radio show type of thing and he was saying that like there's gonna be, I can't remember the percentage, but there's a decent percentage of doctors finishing medical school this year that will not be able to get jobs and will have to look for different careers. I just thought, imagine spending eight years at medical school, then you can't go into profession. You've just studied and took on loads of debt to get into. So when we're told,

Brandy Schantz (42:20.994)
Yeah.

Liam (42:27.942)
there's not enough doctors. It's not to do with doctors. It's about funding and money and the government's poor planning and poor strategy and poor way of like managing business and process. It's a real shame. So the outcome of that is the things we're struggling with are waiting lists and being able to see the right people. So for example, I have two fistulas now. So one of them is healed, one of hasn't. And when I had the first one, I went in to

see a private doctor because I just didn't want to wait seven or eight months for someone to have an appointment. They're under seven or eight months to get dealt with. I got an appointment with a private doctor reasonably quickly within a few weeks and he told me that I needed surgery and he could put me on the NHS waiting list but it would be a minimum three years before they would see me. So in the case of a fistula, abscess is often in bursts and you get changes with it and I thought

Brandy Schantz (43:18.83)
Mm.

Liam (43:26.036)
There's no point being on a list for three years because it'll be so dramatically different by the time I get there that it's probably not even worth going for. I was told because I'd had colitis over 10 years they like you to get more bubble cancer types checks so they put me in for a dye scan colonoscopy which helps you see polyps that are like smaller than normal and you can't see with the naked eye.

Brandy Schantz (43:31.201)
Right?

Liam (43:51.915)
this dye kind of highlights the polyps so you get early stage cancer you can see instead of like further down the line kind of cancer, more progressive. And they booked me in and said it would be between six months and a year and I was approaching the year mark and I had an hour and half so I phoned them and they said it will be at least another year. So this blue sky gives you two, three years ahead of an Ommacol and Loscbe. But by the time I get it, the two, three years had passed so

Brandy Schantz (43:58.616)
Mm-hmm.

Brandy Schantz (44:12.725)
Wow.

Liam (44:21.226)
I would have been better just getting a normal scope, which is what I end up doing, just going for a colonoscopy. So there's all these things that we have in place that are going to be useful, but we just can't get them because of doctor shortages and the waiting lists. So that is the two big barriers for me, I would say, that we're struggling with healthcare in UK.

Brandy Schantz (44:21.41)
Yeah.

Brandy Schantz (44:26.38)
Yes.

Brandy Schantz (44:35.66)
Mm-hmm.

Brandy Schantz (44:40.43)
Yes. Yeah. You know, I think it's important to have these good conversations. And, you know, I told you before we started the show, I want to do another episode with you where we just talk politics around a lot of this stuff, because there's so many similarities between the UK and the US. We're different, but we're very much the same. And, you know, if we're ever going to solve these issues, I think we need to have a good understanding of not just our own issues, but of the world's issues and how other countries are dealing with this. Because,

Liam (44:50.696)
Yeah.

Yeah, I'd love to.

Brandy Schantz (45:10.254)
You know, unfortunately we do. We do have some great advances in medicine in the US. And of course, you know, we just have, you know, I'm a bit of a true believer in the United States of America, not just because I'm a citizen here, but because I've lived many places in the world and I see what we do so very well. So we do have great medicines. We do have great advances. We do have a lot of great doctors, but unfortunately all privatization is not the best way either.

Liam (45:39.594)
you

Brandy Schantz (45:40.044)
you know, what we're seeing here in the United States with the same weights that you guys have because we have such a big physician shortage. And as physicians are struggling to keep up, many are going concierge. So if you can afford to pay a doctor out of pocket, you can get a concierge doctor. If you can't afford that,

Liam (45:57.418)
So yeah, I wanted to ask about that. so if you, so if you, let's just say you're someone who's on a, you know, I don't know, you're a good, a decent job, maybe above average salary type job in the US and you're a billionaire, what are the differences in healthcare there? you, like, I'm assuming the insurances are different, you have different hospitals they go to, how does that

Brandy Schantz (46:08.984)
Mm-hmm.

Brandy Schantz (46:12.942)
Mm-hmm.

Brandy Schantz (46:24.206)
Well, we all have different health insurances depending on your situation. For me, my health insurance, have TRICARE for retirees, which is the military healthcare system. And that allows me to go to military treatment facilities as well as any doctor that accepts TRICARE insurance. I also have Veterans Affairs Healthcare so I can get care at the VA hospital, which is where I go for my Crohn's disease because they have great doctors and

Frankly, for that kind of specialty, some of the best care you're going to get is the VA hospital. I also have access to any medication I want. you know, hopefully that lasts, but you know, the VA hospital's phenomenal healthcare. Most people get their healthcare through their employer. The employer pays for their health insurance and different employers have different types of health insurance. There are better health insurance. There's some that's worse. You can choose.

Liam (47:13.192)
Yes.

Brandy Schantz (47:21.504)
your health insurance plan through your employer. Some people go for something where they can just go see any doctor without a referral. Others go for the less costly option that requires referrals. A lot of it has to do with first your own choices and your own healthcare. Obviously, if you're living with IBD, you probably want to be able to get to a specialist very easily. And you see the value in spending more money on that particular healthcare option. If you

Liam (47:41.801)
you

Liam (47:47.535)
What's the average cost from the lower to the to the lowest type, to the most expensive type? How does it range?

Brandy Schantz (47:55.618)
I mean, it can vary. It depends on how much your employer covers as well. So that's one of the big differentiators. And I think that's where, you know, of course, if you're a billionaire, you can pay for whatever you want. So those guys get all the best stuff, but it's the same in the UK, you know, when you are very wealthy and you're not depending on a job to pay your bills each and every month. You know, you get what you want. You can go pay for it. For the rest of us, I think that there's a lot of push-pull.

Liam (47:59.657)
Mm.

Liam (48:16.105)
Mm-hmm.

Brandy Schantz (48:23.278)
among the, because we're all working class, whether, you know, in the US they say working class, meaning, you know, very blue collar. But working class really, if you need a job to pay your bills, you're working class, it doesn't matter if you're making $30,000 a year or $3 million a year. If you're making $3 million a year, you're doing pretty darn good. But you know what, if you have bills that you still, you're depending on that.

Liam (48:31.593)
Hmm.

Liam (48:42.215)
Yeah, which is 99 % of people. Yeah. Yeah.

Yeah, of course. Of course.

Brandy Schantz (48:50.254)
you know, you're better off than 30,000 because you can start selling stuff off to, to live the rest of your life if you lose your job. you know, essentially it's the same, know, there's just different, different people within that, that scheme. And if you're the kind of person who has a skillset that gets you into a job in tech, for example, if you're working for Amazon or if you're working for Metta or Google or one of these big companies or one of the startups.

Liam (48:54.503)
Yeah, yeah, yeah.

Liam (49:16.54)
Yeah.

Brandy Schantz (49:18.062)
You might get a really great insurance plan where your employer covers a large portion of it and you only have to pay a monthly fee plus co-pays and you get access to great doctors because the reimbursement rates are great. But if you're on, so down at the bottom, if you will, I don't know if it's the bottom, but try care for, know, a little bit. I get great care at the military treatment facilities. I get great care at VA.

Liam (49:41.821)
Yeah.

Brandy Schantz (49:47.128)
There are fewer and fewer doctors that take TRICARE because the reimbursement rates are very low. And when you have a shortage of doctors and they all have patient loads that are through the roof, who wants to take on one more patient that's gonna reimburse you a very small amount of money? So if you have an insurance that it reimburses at a high rate, then you get some really great doctors, but it may not make sense.

Liam (50:03.623)
Yeah, so what?

Liam (50:08.487)
I see.

So it's based on a doctor would have a rate which they would normally charge but they'll accept whatever they get from the insurance. that work? So when you're saying someone's really wealthy and they can pay out of pocket, you said the concierge, did you? Yeah, so they can get the best doctors because the best doctors will want to see them.

Brandy Schantz (50:17.858)
The insurance, yeah.

Brandy Schantz (50:23.224)
That means they get paid. They get paid.

Brandy Schantz (50:29.358)
Yeah, because they don't have to go through the insurance. And right now, if you have a private practice, for example, and in the US more, I think it's over 50 % now of all medical practices are owned by a chain, like a company. They're getting bought up. So that changes the dynamic as well. But if you have your own private medical practice and you're accepting insurance, you have to hire somebody who does nothing but insurance claims all day long. Because they're all different. Everybody has a different insurance.

Liam (50:31.657)
Yeah.

Liam (50:39.695)
Okay, I see.

Liam (50:52.713)
Hmm.

Brandy Schantz (50:56.878)
Patient might have UnitedHealthcare, another one has Cigna, another one has TriCare, another one has Medicare because they're over 65. And when you're over 65 in the US, you go on Medicare. So you have all these different plans and they're all different and they all prove things differently. They have different requirements even within. So within my own insurance, TriCare, I have TriCare standard, which means I don't need any referrals. But somebody else might have TriCare Prime, which means you need a referral.

So there's all these different processes and all these different insurance companies and the insurance companies love to put you through the hoop. know, well, do they need, you know, my doctor has to write justifications for why he prescribed me a medication. I mean, isn't the prescription a loan of justification, but he has to go through this extra layer and you have to hire at least one person, probably two or three who do that all day long. So when you have an insurance that doesn't pay your fee entirely.

Liam (51:26.569)
Mm.

Liam (51:34.729)
Mm-hmm.

Liam (51:42.439)
Yeah.

Brandy Schantz (51:56.59)
especially when it's tri-care that reimburses at a very low rate. you have to pay, I mean, everybody has to pay for the lights to be on. That's not free. Everybody has to pay their rent or their mortgage for where they're housing this medical practice. And you have to pay all these employees. You got to pay somebody to answer the phones. You got to pay somebody to, you know, be these insurance gurus. You have to pay your nurses. You have to pay, you know, there's a whole, there's a lot that goes into this business. And then, yeah, this insurance isn't reimbursing well.

I don't blame doctors for going concierge even a little bit because with the concierge, they can eliminate the insurance entirely and they don't have to hire that person to deal with it, nor do they have to take those lower rates. And to get on to a concierge doctor, everywhere's different, but typically there's a monthly fee. I've heard some people say they pay a hundred dollars. I've heard other people say they pay a thousand dollars a month. You know, I'm sure it's where you live, what the specialty is.

Liam (52:53.224)
So is this doctor based within a medical practice already or do they start their own like concierge practice? you. So if you're in a concierge doctor in your own practice, nothing's insurance, everything's you come in and pay kind of thing.

Brandy Schantz (52:58.104)
They just start their own. Yeah.

Brandy Schantz (53:07.886)
everything you're just coming in pain. And if you can afford it, that's great because you don't have to deal with insurance. You don't have to deal with the hoops. And a lot of the best doctors do it. And I don't blame them. You know, it's bad because we lose good doctors for people who need a doctor with insurance, who takes insurance. But also, if I had a specialty skill that was in demand, I'd do the same thing. I mean, come on now. Everybody would. Let's not be...

Liam (53:09.979)
I see.

Liam (53:19.428)
yeah.

Liam (53:33.458)
Yeah, of course. Well, it's not chill, isn't it? Yeah.

Brandy Schantz (53:37.326)
Come on, don't be silly. know, if I can make $400,000 more a year and work 20 less hours a week, yeah, I'm gonna take that. Sure, that's a better job. So I don't blame them. I don't blame them. But that's generally how it works here. So yeah, we have, but we do have great advances and there's a lot of great things that come, but like you, we have similar issues. There's long waits and it's unacceptable because

Liam (53:47.272)
course.

Brandy Schantz (54:06.7)
You know, people suffer. you know, one of my biggest messages is when we're not working because we're sick, you're losing out on economic output. You know, we are very important cogs in this wheel of the economy. You may not think we are, but we are. So when you're pushing us out of the workforce because we're waiting to see a doctor or can't get treatment, then we're out of the workforce and we're out of that economic output.

So if people started looking at us more as very important pieces of the larger economic puzzle, I think we'd be in a better place. And of course I'd get to do what I want, like stop making me sit here sick for six months while I wait for a doc, right?

Liam (54:43.644)
Yeah, I agree.

Liam (54:49.286)
Yeah, it was just really crazy when you think about it. Like, it's such a shame that people have to do that.

Brandy Schantz (54:56.032)
It really is, yeah, because none of us deserve this. We're people. We may not be billionaire people. We may not be people who have a concierge doctor. We may not be people that are completely healthy, but we're still people.

Liam (54:57.49)
Yeah.

Liam (55:10.007)
Is that the same for a hospital? So say you needed surgery, can you do that concierge as well? Like the surgeon would be and everybody involved.

Brandy Schantz (55:10.582)
And yeah.

Brandy Schantz (55:20.398)
You know, I know that they have, mean, okay, so I'm familiar with plastic surgery where they have their own everything there. But I don't know, you know, I imagine they do it similar maybe. I don't know. That maybe that's an episode we need next. We need to find out what do you concierge doctors do and how does this work? Do I get a really cool colonoscopy? Is this a better place? Like, I don't know, what do I want? Like heated table so I wake up feeling fresh or something. I don't know, or spa water.

Liam (55:24.806)
You

Yeah, yeah, yeah.

Liam (55:32.188)
Mm.

Liam (55:37.648)
Yeah, we should do that. Yeah. Yeah.

Liam (55:48.424)
Oh, I tell you, my private Colnoss B compared to my NHS Colnoss B was amazingly different. Like the NHS one, I had like eight people in the room, trainees and everybody wanting to look in, but with the private one, was literally just this amazing nurse who was like chatting with the whole time, like massaging my shoulders, you know, totally taking my mind off of it. And I had a private room to go to, because in the NHS here, you're in a ward with plenty of other beds, you know, after your Colnoss

Brandy Schantz (55:55.277)
Really?

Brandy Schantz (56:15.542)
Yeah. Get that curtain though.

Liam (56:16.584)
but on this one you're taken to a private room. Yeah, get the curtain, Yeah, you got a private room, you got own bathroom, and everything's much nicer. It's just dramatically better, in my opinion.

Brandy Schantz (56:26.434)
Wow. What? Yeah, I need that. I don't get that. get the curtain. get, I mean, the nurses are always nice. I've always gotten my colonoscopies. I've had almost every single colonoscopy I've ever done, either at Walter Reed Medical Center for the Military or at the VA. The nurses are always phenomenal there. They're so nice. They're so great. And the best doctor I've ever had in my life was an army doctor.

Liam (56:31.45)
Hahaha

Liam (56:48.104)
Mm-hmm.

Brandy Schantz (56:56.192)
Walter Reed. Still love, I always mentioned Dr. Lasek because he's the greatest doctor I've ever had in my life. But, fancy. No shoulder massage. No, just curtain. I once got bumped for vice president Pence at Walter Reed. I was pissed. It's a whole story. Yeah, whole story. So not only

Liam (57:03.484)
huh.

Liam (57:08.487)
You

Liam (57:13.288)
wow.

Brandy Schantz (57:19.124)
you know, do we not get fancy things, but you can be bumped for higher ranking people. And I live down the street from the president and the vice president. So they outrank me.

Liam (57:28.754)
Yeah, I can imagine.

Brandy Schantz (57:30.808)
By a long shot. Well, thank you so much for coming on the show, Lee. And we'll have to do this again.

Liam (57:36.592)
Yeah, we'll do a chapter two or part two at some point.

Brandy Schantz (57:39.886)
Yeah, definitely. So, you know, your Instagram, Living with Ulcerative Colitis, your book as well. We could still order that on Amazon.

Liam (57:48.284)
Yeah, it's available all over the world on Amazon, so anywhere you can get Amazon, you get the book pretty much.

Brandy Schantz (57:54.37)
Perfect. Thank you so much for being on the show.

Liam (57:56.85)
Thank you so much Brandy, great speaking with you.