Stoma Diaries: Sharing the Reality of Chronic Illness

In this episode of Living Chronic, Brandy Schantz speaks with Ben Raybould, known for his Instagram account Stoma Diaries. They discuss Ben's journey with Crohn's disease, the challenges of living with a chronic illness, and the importance of community and transparency. Ben shares his experiences with diagnosis, surgery, and the mental health impacts of living with a stoma. The conversation highlights the need for support and understanding in the workplace and the emotional toll of chronic illness.

Transcript

Brandy Schantz (00:01.538)
Thank you for listening to Living Chronic. This is Brandy Shantz and I'm here today with Ben Raybold. You may know him from his Instagram account, stoma diaries. Today we're gonna be talking all things Crohn's disease, stoma diaries, and just living life with chronic illness. So welcome, Ben.

Ben Raybould (00:21.151)
Thank you very much. Thank you very much for having me. It's pleasure to be here.

Brandy Schantz (00:25.164)
So tell me a little bit about what drove you to start your Instagram account, Stoma Diaries.

Ben Raybould (00:31.691)
Um, so I was trying not to go too deep straight away. Um, but, um, essentially I kind of, had crisis for quite a long time. I was diagnosed back in 2009 and actually probably had it four or five years before that as well, potentially. Um, and for a long time, I never imagined that I would end up sort of having to have any surgery, let alone my whole colon removed and other parts as well. Um, so I think when it

sort of came to be, I was a bit blind going into it really. Obviously you get all the kind of, in England we get lots of NHS leaflets and stuff, but he sort of prepares you for what's gonna happen, but not kind of what comes next really. And I think a lot of the information has got sort of more elderly people on it. It's still something that's much more common with people sort of 60s and above. And as someone who was 36 at the time going into it, I kind of didn't connect with that.

Brandy Schantz (01:10.062)
Mm-hmm.

Ben Raybould (01:30.475)
So I had to sort of find my path, found a few people on YouTube actually. So I wasn't on kind of any social media at all. I'm a teacher. So I kind of tried to stay clear of that to be honest, for quite many years. And yeah, I suppose watching the things that I found on YouTube, there's one in particular who I'm now friends with. He had created a very sort of black and white series of sort of just, it was quite raw, just to pre-op and post-op and sort of the weeks after.

I knew that I'd got me through it. I knew that I'd sort of seen me through the process. And so I just wanted to give back. I wanted to do the same for somebody else. And I kind of thought if I can make some videos, then sort of found the community that existed on Instagram and so if I can do something to help one person, then it's almost like what I've been through is kind of worthwhile. So that's where it came from, really.

Brandy Schantz (02:22.222)
You know, I love hearing your story, not because I love what you went through, but because we are so similar. I had a very similar journey and most people do get diagnosed with Crohn's disease pretty young. So everybody I talked to talked about being diagnosed when they were a teenager or, you know, maybe in college. And I just hadn't met many people who

I can't, you know, I had to have to do math. I can't remember how old I was. I think I was 37 years old when I was diagnosed. And, you know, it was a bit of a shock and I had planned my entire life as a healthy woman. I did not anticipate being diagnosed with Crohn's disease. I didn't plan my career for having Crohn's disease. So, you know, we really do have some unique circumstances.

when you're diagnosed at a later age. And I guess when I say later age, I should probably say maybe mid-career, not even quite middle-aged, just in your late 30s, but you've already planned a life that didn't include a chronic illness. How did you adjust to that? Suddenly, okay, I'm 36 and now I have Crohn's disease.

Ben Raybould (03:41.459)
Well, so yeah, so actually my I was 24 when I was diagnosed, but I mean, it's still I was in I was in a career by that point. And actually, it made me change. No, no, it's fine. So I was 36 when I had the surgery. And I'd had quite a few years of Crohn's before but I my Crohn's was so mild, it didn't really, other than initially and kind of getting on top of it, it didn't really affect me. So

Brandy Schantz (03:50.115)
okay, I'm sorry. thought you said you were, I had it written down, you were 36.

That's right, yes.

Brandy Schantz (04:02.914)
Didn't affect you. Yeah.

Ben Raybould (04:06.059)
It was still the same. It was still effectively that because I kind of lived this life of I know I've got it. It's not really bothering me. I can kind of get on with stuff to then I'm really now. I mean, at the time I didn't really see it, but now looking back, I was really ill and having to adjust and then make quite big decisions on the back of that as well. So, yeah, I suppose actually when you're my own packet or it was 24 when I was diagnosed, I was working as an environmental scientist at the time.

And when I hit that diagnosis and I was initially quite unwell, especially with like the toilet urgency and that side of stuff, which is always my bigger symptoms. I was out in the middle of a field in the middle of nowhere and it was no toilets. I can't, I can't do this. I literally can't do this job anymore. And then I looked at what my boss was doing and thought, well, I don't want to do that and be kind of stuck in an office either.

Brandy Schantz (04:36.142)
Okay.

Brandy Schantz (04:43.405)
Mm-hmm.

Brandy Schantz (04:52.686)
Mm.

All right.

Ben Raybould (05:02.803)
At that point, I'd already kind thought about switching to teaching anyway. And actually, getting the diagnosis was a big part of the reason I switched because I thought at least if I'm in a kind of building all the time, there's going to be toilets. It's not ideal. I can't really just rush out of the classroom, but at least it's still better than being in the middle of nowhere with absolutely no toilet. So it was, you know, that was hard to adjust and big decision. And then again, as I got more ill in my sort of mid thirties,

Brandy Schantz (05:22.251)
Right.

Ben Raybould (05:32.811)
It was really hard by that point, I'd settled into teaching. I was, I was doing a management job. I was, I was head of department and I couldn't, I couldn't cope with it. I mean, stress is always being my big trigger and I just couldn't handle it anymore, I suppose. And it was the combination of the illness and, having those responsibilities was just a horrible concoction. then like you kind of alluded to is, it's hard because then mentally you're kind of like, well, now I'm having to kind of step

back from something that I've built my way up to at this point. And I'm on this upward trajectory to now kind of have to come back down again. And it was hard to then kind of get over the, I don't know, sense of failure, I suppose that I'd kind of, great. Now what am going to do? Yeah. So difficult.

Brandy Schantz (06:03.467)
Yes.

Brandy Schantz (06:18.562)
Right.

Well, I, know, one thing that I think has been really interesting about this podcast and I've worked in the international community, you know, obviously long before I had Crohn's disease and had the opportunity to work with different cultures and in different countries. But there's so much that's similar, no matter where you live about being chronically ill. And we have such similar experiences, whether you're in

you know, the UK or the United States or Germany or Australia, we all seem to have a lot of the same stories. And there just isn't a lot of support when you're in a career that isn't really made for chronic illness and suddenly you need a change. Nor is there a lot of help in companies or even in government agencies for employees who suddenly find themselves in this situation. And

you know, what do you do to help them to remain employed, to not lose everything they've gained, to not, you know, have them get set back in their careers just because they've had this, you know, illness come up in their lives.

Ben Raybould (07:30.603)
Yeah, and it's, and it's really, it's really hard because, you know, I think, you know, what I say back in 2009, when I was diagnosed, people kind of knew of Crohn's disease that most you could talk to people, you know, one out of three had probably heard of it and the others hadn't, but it was, it was growing on the sort of, you know, knowledge scale kind of thing, awareness, but I don't think anyone really knew what it meant or what the reality was.

Brandy Schantz (07:40.824)
Right.

Brandy Schantz (07:55.661)
Right.

Ben Raybould (07:57.065)
I still don't think they do. I've had to have conversations with my employers various times with different employers and kind of like, well, this could happen and it's not happening now. Well, no, but I know that, but it could happen and I'm worried about it and that we need to have something in place if it does. And because you can't see it, it's really hard for other people to understand. again, I think back to my prior experience, when I was an influencer scientist, I used to have to

Brandy Schantz (08:15.32)
Hmm.

Ben Raybould (08:26.435)
sort of support and look after students that we'd have with us that come for sort of a year in industry kind of thing or as part of their degree. And we had one in particular who I am quite ashamed I suppose now looking back. I think she had MS and chronic fatigue and things like that and so she was struggling. I had no knowledge of it, no understanding, no comprehension and I remember making comments to other people about what

Brandy Schantz (08:42.99)
Hmm.

Ben Raybould (08:52.203)
Why is this person so lazy? Why won't they just get on with it? How can they just fall asleep? This is just useless. And I just didn't know. I didn't have any kind of comprehension. And I think that's still a big part of the problem employment-wise, regardless of where you are internationally. think because it's something that unless you know somebody who's gone through it, and even then I don't think you can really understand it. And it's so individual for each person as well.

Brandy Schantz (09:01.71)
right?

Ben Raybould (09:20.701)
It's really hard from that employment point of view, I think.

Brandy Schantz (09:20.75)
Mm-hmm.

Brandy Schantz (09:24.618)
It is. I, you know, I remember when I had realized I needed to change careers because I had worked in the intelligence community and everything I did was top secret. So nothing I could do from home. And they just couldn't get me into remission. Unfortunately, I was just every day I was sick. And I remember thinking to myself, well, I don't think I can apply for another job even because what am going to tell a potential employer? Well, I'm sick most mornings. I can usually get to a

get out of the house by 10, maybe 11. Some days I'm sick all day long, but I can try to work from the hospital if I have to go. I mean, what do you tell an employer? What to expect? It is difficult. It is difficult.

Ben Raybould (10:06.699)
Yeah, you're right. that's, and then mentally, that's really tough for you as the patient to kind of plan and look forward to your own future because it's the unpredictability of it and you don't know what's around the corner and that's hard for you to make your own plans and goals. Yeah, it's really tough.

Brandy Schantz (10:23.086)
Yeah, absolutely. It really is. And of course those treatment plans are what make the difference. And, you know, obviously I'm now in strangely enough symptom free remission. You know, it only took me 10 years, but, you know, you talked about, you know, that finding out you needed the surgery and how much better it can be once you do that. You know, when they're giving you these treatment options, it's

whether it's surgery or a biologic and they're talking about side effects that include cancer, it can be very overwhelming and nothing seems like a good idea. But you are very open about your surgery and how that's affected your life. So tell us a little bit more about that.

Ben Raybould (11:13.451)
Yeah, so I had elective surgery, which for a long time, I felt like I had genuinely chosen, I'd actually, I had made the choice to do it. And it was probably only about a year and a half, almost two years later that I kind of realized, well, I did, but that would, they probably only use those words because I wasn't an emergency surgery situation, but they knew I needed it. They knew that actually, because they would have been surveying all my levels and everything from a...

Brandy Schantz (11:34.926)
Mm-hmm.

Ben Raybould (11:43.051)
medical point of view, they would have been tracking where I was and they could probably see where I was ending up. But that mentality of it's elective was really, it was really hard, but equally my saving grace. because I felt like I'd chosen it, I felt like I had to be positive. And I think that then reinforced a lot of positivity. And that's where I say like my account grew from. And so a lot of it was bravado, I think a lot initially of I'm okay and look at me with my bag out and everything can

Brandy Schantz (11:56.462)
Mm-hmm.

Brandy Schantz (12:11.736)
Hehehe.

Ben Raybould (12:13.199)
I think that, but that then did genuinely help me because it then if I could put pictures of myself on the internet with my bag out like, well, no one's going to care. No one cares anyway. And actually I could walk down the street and no one's going to know I've got it. And even if they did, like, they're not going to say anything. And even if they did, well, I'm confident enough to talk about it. So I think, that positivity came from that mentality of, of, of, of, of chosen to do this, but

Brandy Schantz (12:35.182)
Right.

Ben Raybould (12:43.211)
It was still hard. It was still really tough to have to sort of say yes, because I genuinely didn't think I was that ill. I kind of had got to the point where, as I said earlier, my main problem was urgency and then towards the end in continence. I got to the point really where I'd probably have like 30 seconds notice from being fine to I was going to the toilet. So the amount of times that I tried to get to the loo, I wouldn't even actually get onto the toilet before the accident had happened.

Brandy Schantz (12:57.026)
Mm-hmm.

Brandy Schantz (13:03.906)
Yes.

Ben Raybould (13:13.483)
Um, so it was, you know, that would mentally was really tough, but I know I was getting more fatigued and tired and, um, anemic. I look back now and I can almost see in photos kind of. I didn't look good. I did look pretty bad. Um, you know, I was, was gray. I think when I went back to work after the surgery, someone said, they say, were like a zombie. You just sort of shuffled around.

Brandy Schantz (13:31.886)
Yeah.

Brandy Schantz (13:41.068)
Yeah.

Ben Raybould (13:42.603)
and you had no energy and you were just surviving. And I think it was like, actually I can see that now, but I didn't at the time. So making the decision to do it was really hard because I say it, I just didn't feel like I was at the point of needing that. And I think, again, I kind of think back to what I'd seen in social media in particular in terms of like what Crohn's disease looks like and.

Brandy Schantz (13:49.89)
Mm-hmm.

Ben Raybould (14:10.059)
I'd never really had many of the sort of serious symptoms. I'd had, I think, one hospitalization for sort of pneumonia and some of the chest infections at one point. And other than that, I had not really had any sort of big medical stays. hadn't had any big complications. I hadn't had anything like a fistula or anything like that. And so I kind of thought, do I really need this? Is this really what I need? But then you look back and think, well,

I've had steroids, I've had too many steroids, I've had way more than you're allowed to have in a year and on higher dose than you should do. And that, like you say, brings about lymphoma risks and all sorts of stuff. I've been on pentazone azaleazine for goodness knows how long. I've had azafiraprin that's then put me at risk of all sorts of illnesses and everything all the way through COVID as well, which is, know, as I'm sure you probably were in the highly clinically vulnerable list.

Brandy Schantz (14:41.109)
Mm-hmm.

Brandy Schantz (14:48.62)
Mm-hmm.

Ben Raybould (15:07.519)
You had to line up with all the elderly people and they all turn around looking at you, literally saying, what are you doing here? This isn't for you. No, it is. I am on lots of medication. And so you've gone through all of that and you think, well, then I had to try biologics and I failed two biologics and they just did nothing. They didn't change my levels at all. And you think, well, okay, maybe, maybe I do need it. It felt pretty drastic to have a massive organ removed felt.

Brandy Schantz (15:07.618)
Mm-hmm.

Brandy Schantz (15:13.794)
Yep.

Ben Raybould (15:35.741)
a big decision to make. And again, it wasn't actually that wasn't planned. So the initial surgery was going to be a loop of the ostomy and retaining my colon trying to give it a rest. But I think when they did the CT scans in the build up, it was too much damage all the way through my colon. And they found narrowing in the end of my ilium as well. So that would have been what they would have made the stoma from. So they couldn't do that either. So then they just made the decision to remove the colon, retain my rectum.

Brandy Schantz (15:54.094)
Mm-hmm.

Ben Raybould (16:05.035)
And think I had about 10 centimeters myelium removed as well. And then an end ileostomy. And that was then obviously the hope was that would then settle. But my rectum was always my worst bit of my Crohn's. But again, the hope was that it would calm down. And then I'll say seven months later of another really tough decision of because I was suffering with like the mucus discharge and inflammation in my rectum. Do I kind of carry on and persevere with suppositories and things that aren't really working?

Brandy Schantz (16:27.97)
Mm-hmm.

Ben Raybould (16:34.987)
Or do we leave it and just hope it calms down, but then you've got the cancer risk that's relatively undetectable, extremely hard to detect. Or do you go through the proctectomy, which is a really pretty hard surgery and make it permanent and then you've got no option. There's no going back now. Which I ended up electing for that choice, which I'm really glad I did again from a mental point of view. think for me, knowing that it was then permanent.

Brandy Schantz (16:41.048)
Yeah.

Brandy Schantz (16:50.19)
Yeah.

Ben Raybould (17:04.776)
helped me kind of come to terms with it as that final kind of piece of thing. Okay, well, I've just got to get on with it. This is life. The hard part then is knowing that if it's Crohn's disease and not Crohn's colitis as I was initially diagnosed with, it could come back and it could come back in small intestine, mouth, stomach, anywhere, can't it? And then you think, okay, well, then you're at risk of short bowel syndrome and...

Brandy Schantz (17:08.481)
Yes.

Brandy Schantz (17:27.267)
Mm-hmm.

Ben Raybould (17:33.033)
all the kind of complications that can come with that. But you've got to weigh these things up at the time and you can only deal with what's on the plate in front of you. on the plate was suffer with this horrible stuff that I'm suffering with, which I thought I'd have evaded by having the first surgery or have the risk of rectal cancer. Well, I certainly don't want to risk that. So let's just take it out and be done with it.

Brandy Schantz (17:49.965)
me.

Ben Raybould (18:00.767)
Yeah, a lot of hard decisions along the way, but I am really pleased with kind of where I've ended up and just trying to stay positive now that, you know, it doesn't come back again somewhere else.

Brandy Schantz (18:13.41)
You know, that's all we can do, right? Just hope and cross fingers and, you know, do the best we can. But, you know, doing what's best for your mental health is of course, ultimately, you know, it's about doing what's best for your health overall, of course, that is, you know, our goal. I, you know, so often we all, we don't talk enough about the mental health, but when I start to dive into it, that's what...

we're really concerned about most of the time because this takes its toll on you mentally and emotionally. And it's really, really difficult to live with not just because of the pain, which we talk about all the time, but because of the mental and emotional toll living with a chronic illness takes on you. So, you know, how would you say that your attitude has changed since the surgery?

the first day and the second, like how is it really, what has it really done for your mental health and how you've been able to approach living with this?

Ben Raybould (19:12.955)
It's interesting you kind of raised that. think that's always been a big drive in a lot of the communication I tried to put across really, I think as a man as well, men are not brilliant about talking about how they're feeling and their emotions. There's not a huge amount of men out there in general kind of sharing what it's like to have chronic illnesses and stomas and kind of stuff like that. So I find I feel like it's quite important to share that side. But it was actually my mental health that

Brandy Schantz (19:32.013)
Right?

Ben Raybould (19:41.899)
actually triggered the surgery. Because towards the end, before the first surgery, I was beat. I mentally, I was done. And what triggered the surgery was I called my IBD nurse, I had good relationship with her. And I just, I remember just that I can't do this anymore. And I think my voice cracked and she could hear it just on the phone that I was beaten. And she's like, right, I'm gonna...

Brandy Schantz (19:44.386)
Mm-hmm.

Brandy Schantz (19:51.405)
Mm-hmm.

Brandy Schantz (20:08.226)
Mm-hmm.

Ben Raybould (20:10.389)
say that we're going to speak, get used to speak to a surgeon, I'm going to speak to the consultant and let her know. And it was almost like she kind of made the decision that that's it. And I think now in hindsight, that's where I think I know that they kind of got me on the radar already. And that probably was already the trajectory that they were expecting because the nurse was able to kind of fast track that. So from initially feeling completely beat to then I suppose, feeling quite lifted by the prospect of the surgery and

what it might mean in terms of getting my life back on track. Yeah, that lifted me considerably. I suppose I didn't then take a dip because I initially found it quite hard with the body image. I found it really hard to kind of like care for my stoma initially, to be like touching it and seeing the actual stoma. When the bag was on, it was fine, but...

Brandy Schantz (20:52.695)
Right.

Ben Raybould (21:02.837)
probably not the nicest thing to say, but it felt to me like I was mutilated initially, seeing something that's supposed to be on the inside now sticking out on the outside of you. It looks quite alien, and it takes a quite a lot of time to adjust to that. So yeah, I think I then dipped a little bit. But then I suppose then the positivity that I was trying to portray and gee myself up with

Brandy Schantz (21:07.957)
Right.

Yeah.

Ben Raybould (21:25.651)
again lifted me back up again and then I got to a point where I knew I was helping people and I think when I got to the point where my account meant I could help other people that then gave me a massive well-being mental health boost because of you know, my pain and my suffering is now it's had a purpose because I've supported somebody else through this and Then you know then you take that dip again because you're in the face with this next big decision from you know Having had all the incontinence issues

Brandy Schantz (21:30.349)
Mm-hmm.

Brandy Schantz (21:42.86)
Yes.

Ben Raybould (21:54.783)
with the feces to now having it with this mucus stuff, think, okay, now I feel pretty, pretty, I've gone through all of this, had this major surgery and now I'm back here again. That was tough. And it was at that point that also the realization that I was fine, I was really fine after I'd recovered. And it was about a month or so being back at work where the symptoms started. And it was the connection between the two. This is this job role as well.

Brandy Schantz (21:57.794)
Yes.

Ben Raybould (22:23.755)
It's the combination of being a young dad, working very long hours at a boarding school and then having a management role. It's too much. can't do it. Initially, it was quite hard to be able to step down without having to leave entirely, which would have meant a massive upheaval to my entire family because we live at the school that I work at. And I wasn't prepared to do that. So it took quite a lot of conversation to get to the point where

Brandy Schantz (22:31.758)
Mm-hmm.

Ben Raybould (22:50.611)
we could allow me to kind of stay but step down. That caused a lot of stress and mental pressure, which added to the pot and probably made things worse. But at the same time, I knew I had to make those decisions, not just for me, but for wider family as well. And then you go through all of that. And there's been some complications on the back of that surgery, but overall, it's ultimately positive.

And yeah, I think I've had little bounces. I certainly recognized about a year ago where I did have a quite a significant mental health dip. And I think a lot of it is where socially I've kind of recluse myself and I've drawn away from a lot of situations because it's tough when you're living with these chronic illnesses like the stuff we mentioned earlier and people can't necessarily fully understand.

Brandy Schantz (23:40.759)
Yes.

Ben Raybould (23:45.973)
But then you kind of get to the point where you're kind of mentally and physically better. So you want to kind of get out there and do stuff, but then you kind of don't know how anymore. And that gave me a little mental dip and I had to work through that. I had some counseling and some therapy and that was a big help. And that lifted me back up again. And again, I think sharing that kind of stuff through my account. When I made the account, I was trying to be quite deliberate with the name.

I genuinely wanted it to be like my diary of my life with a stoma. And I still try to do that. mean, today, I posted today that I had my first public bag leak today, which is, you know, not bad going almost, you know, over three years in. And that didn't really didn't upset me. It was fine. Like it wasn't a massive one, but it was significant enough that you could see it through clothing. And as a colleague pointed out, and again, I'm really lucky that I live where I work, I could

Brandy Schantz (24:18.037)
Yeah.

Brandy Schantz (24:33.581)
Yeah.

Ben Raybould (24:43.147)
I had a free period when they spotted it. They discreetly told me, and I no, great. All right, I'm gonna go home and get cleaned up and then I'll be back again for my next class. And I know I'm very fortunate in that situation, but I've got supplies at school. I have got a change of clothes at school and you've just got to be prepared. But I think if that had happened two, three years ago at the early stages, I would have been probably mortified.

Brandy Schantz (25:04.226)
Mm-hmm.

Brandy Schantz (25:11.394)
Yes.

Ben Raybould (25:11.463)
now it's kind of almost like water off a duck's back and it's like it's fine it's going to happen at some point and you just kind of got to get on with it and make the most out of things so yeah it's definitely been an emotional roller coaster.

Brandy Schantz (25:25.966)
Yeah, it's I always say it's it's not just you it's all of us the emotions the mental health that that's the hardest part of it I can take the pain I can take you know the hospital visits the you know even the 7,000 doctor appointments but the mental and emotional toll that's that's what gets to you that's that's what that's what it

And I'm really happy that you're really talking about it too. I've had a few gentlemen on who get, you know, they have accounts or YouTube channels and they get out there and talk about what it's like living with this. And you have the same problems that people expect women to have, you know, the body image issues, the, you know, mental health toll it takes on you, you know, we're all the same, you know, we're all the same. And I'm really glad that you're out there speaking up so that

Other men have somebody to look to. I think women are not surprised at all when we talk about our body issues when it comes to having a chronic illness. But you guys are the same. You really are. It's hard on all of us. So I'm glad that you're sharing and that's one of my favorite ways that, when I talk about how do you get through these crazy things, I always say,

Help others find your way to charity, find your way to lift somebody else up because that's one of the best ways to get through it is to help others.

Ben Raybould (26:57.813)
Yeah, absolutely. And I think transparency throughout, even in the earlier days when I wasn't so ill, transparency has been the big thing. Like today. And I knew instantly that I wasn't upset. And I knew I wasn't upset because they all knew. Because I talk about it all the time. It's been a very open conversation in the staff room. So when it happened, it was just a, Ben, you're leaked. You had a leak, as I want. On your white band, you've got a leak.

Brandy Schantz (27:05.378)
Mm-hmm.

Brandy Schantz (27:23.758)
Mm.

Ben Raybould (27:27.989)
And that was it. That was it. Like there was no, no making me feel bad because they all knew about it. And I knew I've told them, I've prepped my classes. And I sort of say at the start of each year, I've got the stoma bag, explain what it is. There is a potential I could be standing next to you and I could do a little Trump because I have no control or I could have a bad leak and I'm going to have to go and sort it out. And it's that transparency that gets you through because it removes the barriers and embarrassment, but it takes a lot to be

Brandy Schantz (27:51.42)
Yes.

Ben Raybould (27:57.131)
I don't know if brave enough is the right word, but to have the kind of foresight and understanding that actually, if you're transparent, people aren't judging you for that. They're just gonna, that gives them the base level of understanding that they can then make adjustments or support you.

Brandy Schantz (28:12.568)
Well, it is brave. It is brave because it's very difficult. You know, if there's a room full of people like us, we talk about things that the normal person would never ever dream of talking about. mean, I have no problem walking in a room and saying, let's talk poop. But you know, hey, I have Crohn's disease. You got to get over it at some point.

Ben Raybould (28:23.156)
Hehehehehe

I'm Tree.

Ben Raybould (28:30.729)
Yeah

Brandy Schantz (28:35.598)
And I remember the early days where I did not want to tell anybody what was wrong with me. I did not want to talk about why I wasn't able to go to work. did. Nobody wants to call into their boss and say, I'm sorry, but I can't get off the toilet today. I just can't. You know, that's, that's, that's not a good feeling. So, you know, when you get to that point where you're brave enough to say, okay, everybody, this is it. This is, this is my reality. It really is brave because it's hard.

Ben Raybould (28:50.123)
Yeah.

Brandy Schantz (29:03.946)
Nobody wants to talk about this. Absolutely no one. We did not get the glamorous chronic illness.

Ben Raybould (29:07.369)
Yeah, yeah, that's it, ain't it? No, no, definitely not. No, no.

Brandy Schantz (29:13.358)
No, no glamour here. None at all. None at all. Well, thank you so much for coming on the show, Ben. This was great. You know, like I said, I really, I love what you're doing out there. Keep sharing and you know, thank you for doing what you do.

Ben Raybould (29:31.893)
Thank you very much for having me. It's always good to talk to somebody that understands and wants to help other people by having these platforms to have the discussions. So yeah, I really appreciate it.

Brandy Schantz (29:41.014)
Yeah, the more we all stick together, the better we'll all be.

Ben Raybould (29:44.235)
exactly.

Brandy Schantz (29:47.16)
Thank you for being on the show.