067 Good days and bad days with two stomas with Siobhan Coleman

Siobhan takes us through her journey with cervical cancer, focusing on the life-changing decision to undergo total pelvic exenteration surgery. Siobhan discusses the profound impacts of this major procedure, which led to her living with two stomas, and the rollercoaster of good and bad days that followed.

With honesty and courage, Siobhan talks about the extensive post-surgery rehabilitation she endured, detailing both the physical and emotional challenges she faced during her recovery. She opens up about her struggles with mental health, shedding light on the often unseen battles that accompany such a significant medical journey.

She emphasises the need for greater access to information and support for individuals dealing with similar surgeries, advocating for enhanced patient education and community support networks.

"Good Days and Bad Days with Two Stomas" is not just a story of survival; it's an educational and supportive resource for listeners facing similar challenges. Siobhan’s narrative provides comfort, understanding, and hope to others, highlighting the resilience required to navigate life after such a profound health crisis.

About Siobhan Coleman:

Orthopaedic Massage & Manipulation Therapist BSc (Hons), DSM, DRAM, DARM, DManip, DMA, SMTO & CNHC Registered

Siobhan was diagnosed with stage 3C cervical cancer in July 2021. She started 5 weeks of chemoradiation which ended in September 2023. 

She then had three sessions of brachytherapy in November 2023. The tumour shrunk from 6-6.5cm to 2cm on her cervix but thankfully no longer present in her lymph nodes. The tumour was monitored for a few months and a biopsy showed in April 2022 it was still present and had probably grown a bit since last scan. 

Siobhan then underwent total pelvic exenteration June 2023 when her ovaries, fallopian tubes, uterus, cervix, vagina, bladder, descending colon, rectum and anus were all removed.  The vaginal opening sewn closed and an end colostomy and urostomy (ileal conduit) were formed. 

Siobhan has good and bad days. She makes the most of her good days and can do some work, run and walk the dog.  On bad days she sleeps all day. 

Follow her on social media:

Facebook: @SioOrthoMassManip
Instagram: _running_for_my_life_
You Tube: #rehabwithSio

About Sarah Bolitho:

Sarah Bolitho helps fitness and health professionals develop their careers and grow their businesses by providing specialist training in teaching, assessing, and internal quality assurance, together with qualifications in exercise referral and disability.   

With over 30 years in the health-related fitness and physical activity fields, Sarah has a wealth of experience and knowledge.  She has worked in most roles in the industry from group exercise to personal training but specialised in working with specialist populations.  For over 25 years Sarah has trained fitness and health professionals to work with clients with long-term conditions, mental health issues, disabilities, older adults and pre/post-natal women.  

She has a post-graduate diploma in exercise and health behaviour and extensive training in supporting behaviour change.  

For more about the training and support Sarah offers, visit www.sarahbolitho.com or contact her at admin@sarahbolitho.com.

Follow her on social media
Instagram: https://www.instagram.com/fabnewlous_active_lives
Facebook: https://www.facebook.com/fitnesscareermentor
Linkedin: https://www.linkedin.com/in/sarahbolitho

Transcript

Sarah (00:01.998)

Hello and welcome to this episode of Creating Active Lives with me, Sarah Bolitho and my guest this week, Siobhan Coleman. This is going to be a really interesting episode because Siobhan is actually an orthopaedic massage and manipulation therapist, which we'll talk about exactly what that involves later. But she was diagnosed with stage three cervical cancer in July 2021, had five weeks of chemo radiation, which is quite an intensive treatment starting in September 2021 and then three sessions of brachytherapy, which is kind of like internal radiotherapy in November 2021. The tumour had shrunk and was no longer present in the lymph nodes, but a biopsy the following year, April following year, showed that it was still present and possibly had grown. So Siobhan then went under a total pelvic exenteration.

Now I'm going to get Siobhan to introduce herself and explain exactly what that is because it's a big surgery, isn't it Siobhan?

Siobhan (01:05.334)

Yes, it's the biggest surgery any human can have actually. So everyone's pelvic exenteration is slightly different. So there's actually three different kinds. There's an APE, PPE and TPE. So I had a TPE. So like that's the total. So in my case, my total pelvic exenteration involved the removal of my ovaries, fallopian tubes, uterus, cervix, vagina, bladder, descending colon, rectum, anus. I had an ileal conduit formed which is my urostomy and I had a colostomy formed and I had what they call barbie surgery so everything underneath was like sewn closed. So yeah like say it's the biggest surgery you can have before you need like another organ transplanted back in so yeah that was it.

Sarah (02:02.19)

Wow. So, so everything was, everything was basically sewn up and then you were left with a colostomy, obviously for your bowel, for bowels and then an urostomy or an ileal conduit for, for bladder. I mean, that's, that's a huge surgery and it must have been, you know, quite a shock to go through that.

Siobhan (02:02.838)

That was really, really difficult. Really difficult to listen.

Yeah because that's not the surgery I was expecting to have. So what was really funny was like after my initial treatment or what I call my initial treatment, like my chemo radio and my brachy, they kind of were optimistic, but there was almost like a reservation to how they would always speak to me. So, you know, they would say things like, you know, you're doing really well but you know, we just want to keep an eye on this. And I was like, well, I feel great. But I mean, great is a relative term given how awful I'd felt prior to that. And, you know, they were like, we're just going to keep an eye on you because you know, your most recent scans. So I think I had like a scan 10 or 12 weeks after the brachytherapy finished. And they were like, well, there's something still kind of glowing. We hope it's just post radiation damage, but you know, we want to keep an eye on this.

They were still being positive, but still a bit reserved. And I was like, I still feel really good. So then we did this biopsy and they were like, yeah, this glow is actually like a mass. And we think it's actually a little bit bigger than the last time we seen it. And I was like, all right, okay. And they were just like, but you know, it's still not in your lymph nodes. That's great. And we're going to do a surgery. And I think just the way they were talking, I was like, well, it's not massive, but I don't really know how massive massive is and it's not my lymph nodes so it's probably going to be a hysterectomy you know as if that's like the really easy option which obviously isn't the easy option but that's all like and nobody put that in my head I kind of put that in my head I was like well what else could you know they possibly else do and then like I had that biopsy and then they got me back in to talk about the results where I kind of got I knew something big was going to happen because I got escorted from the waiting room by a nurse to the consultant's room.

And I was like, normally for all my appointments, they just shout on you and you just go in. So I was like, this is a bit strange. And she was like, are you feeling okay today? And I was like, yeah, yeah, I feel fine. Like I'm okay. And she was like, okay, the doctor's waiting on you. And I was like, okay, that's a bit odd. So I went in and sat down and I had like a lot of questions I wanted to ask about a surgery. Assuming it was the one I had in my head. And when I sat down, the doctor was just like, we've got a big discussion to have today. And I was like, yeah, cool. Like I'm ready for it, I've got all my questions ready to go. And he was just like, I think we're talking about different surgeries here, like, like we really have a big discussion to have. And I was like, like, like, why can't I just have a hysterectomy? That was the first thing I said, like, why can't I just have a hysterectomy? And he hadn't even said anything. And he's like, it's not even on the cards. And I was just like, well, what are you gonna do then? And he was like, well, we're gonna do a TPE. And I immediately just burst into tears. Like, I was just like, I'm not doing it like before you even tell me anymore I'm just not doing it and he was like well you've obviously read about it and I was like yeah I've read about it because if you kind of do like a very quick google search it can come up as obviously an extreme end sort of case scenario for a surgery and I was like I'm just not doing it and he's like well you know let's have a chat and I think I was gonna be there for about 40 minutes or something just chatting to me and I felt I suddenly felt very stupid because all the questions I had written were totally irrelevant to the conversation we were then having. And I just couldn't really process what he was telling me. You know, like it happened so quickly and I was just like, nah, I just don't want to do this. Like, I still hadn't recovered from my initial part of treatment. And I was like, I am not prepared to go through this because the the sort of life post -surgery that they were describing for me. For me, was not a life. And that maybe sounds a bit derogatory, but I was just like, you're literally taking away everything that I am doing because they were like, you'll never be active again. You'll be lucky if you can kind of go back to work. You'll not be able to do your job. You'll have to get a desk job or you might not even be able to do a desk job.

Siobhan (06:28.694)

because of the type of surgery, you know, they were like, you might be bed bound. And obviously they have to tell you all the really severe negatives, but I was like, mate, I'm 33 and you're literally taking my life away to supposedly save my life. And they were like, yeah, but you might be alive. And I was like, but I might not be. And at that point, like the chances literally were, if we, cause I said like, you know, how long have I got if I don't do this surgery? And they're like, we think your tumour's really growing very quickly, like since the end of your treatment if you definitely don't do this surgery. So this was like end of April, start of May 2022. They were like, if you do not do this surgery, you will be dead by Christmas. That is like, that's a definite will. You will not be here. And at that point I was like, I still feel okay. But like, I mean, I probably didn't maybe feel as good as what I had in sort of January, February, but like I was, I was doing a little bit of running, like I was doing like doggy walking, like I still felt okay relatively.

Sarah (07:11.758)

Wow.

Siobhan (07:26.582)

And they were like, but if you do this surgery, you might have a 50 % chance of being here at Christmas. And I was like, well, 50 % maybe or 50 % definitely not. These are still not really great odds to be telling me. And I was just like, nah, I just really need to think about this. Like, I'm just not really prepared for this. So I kind of went home, told my mum and dad, who were obviously distraught, like absolutely devastated. And I just was like, I'm going out, I'm just taking the dog and I'm going for a walk. So by the time I left the house I'd messaged a couple of girls from cancer forums that I'd been chatting with on social media and they were all like, you have to do this, you just have to do it. And I was like, woah, woah, it's not you that's having it, let's not be so hasty. And they were like, no, you need to do this and I'm sure we can find other people because it's a really rare surgery.

And it actually turns out I'm the young, well, we believe I'm the youngest person in the UK to have had this surgery. So I kind of did a bit of social media stalking that evening on my walk along the canal. And by the time I got home, I was like, I'm going to do this surgery. My phone was lighting up like black pool illuminations. Like so many people are getting in touch with me. They were from America, like down in England, Wales, Australia, like people who'd all had the surgery, men and women for different pelvic or gynaecological cancers, and they were like, you have to do it. Everyone I spoke to who'd had it hadn't regretted having it. They had potentially had a secondary comeback or metastasis post surgery or they were, you know, they'd had some sort of issues post surgery, but even with their metastasis or their difficulties none of them regretted having it and that for me I was like right this is maybe not the way I want to live but it's going to allow me to live so I need to do this and yeah that that all basically happened just in a couple hours like I just went from I'm not doing it to I'm doing it and then the surgery happened within like four weeks or something like like it was really really quick like it just yeah I was yeah taken very quickly and

Sarah (09:48.462)

I mean it must have been so helpful to be able to speak to people who'd gone through it.

Siobhan (09:52.598)

Yeah, I can't imagine having, I mean, I think like literally 30 years ago, if that was, if I was here 30 years ago, like, I probably would be dead. I don't think I would have went ahead with the surgery. I wouldn't have had the communication with people around the world to be able to do, to give me that information. And even, like even things like with the surgery, not everyone's TPE is the same. So depending on where your cancer starts or spreads to will dictate how definitely it is done. I kind of got the offer of, I think they call it a vaginal flap, where basically because they remove your vagina and kind of close up your vaginal canal, they can take something from your tummy or your leg and sort of give you a design of a vagina for all intents and purposes. And I was just like, nah, that's not going to save my life. Like, I just need you to save my life anything that's cosmetic is not important right now like just do it because that's going to make the surgery more complicated, more prolonged, more anaesthetic like my body's already been battered with chemo radio and bracket I don't need you to do like just just save my life. So I opted not to have that and I know people who have opted for it and don't regret it and they're happy with that but I just feel like it wasn't going to be beneficial to my lifestyle at that point and again I had a very short surgery and my team were sort of prepared for like a 12 to 14 hour sitting in surgery is kind of how long I mean some people's run on longer than that again it depends on where the tumour is located you know sometimes scans scans are great the scans are also bad because you don't get that full picture till you're in somebody and a scan can maybe show you it is an X, Y, Z size and actually you get in and it's smaller or it's actually bigger or it has spread somewhere and the scan's not showing it. So, you know, they prepared for like a 12 to 14 hour sit -in and my surgical time was like five and a half hours but I was under for about eight because they were actually working so quickly or able to work so quickly that they had to wait on equipment arriving from different theatres because they planned it across the whole day, literally the whole day into the night and yeah they were like twiddling their thumbs kind of just waiting on stuff arriving for the next bit so so that was pretty pretty cool as well that they were super super rapid you know less anesthetic less open to the elements just it was all just all mind -boggling.

Sarah (12:10.35)

All right. Yeah.

Sarah (12:27.662)

So you were active before all of this happened. Activity was a big part of your life.

Siobhan (12:30.55)

Yeah, yeah, I was really active. Yeah, and I think that's also what's helped my recovery is because of how active I was before. I think like just with any illness, whether it's cancer or something else, like if you can typically be active before you're unwell and can try to continue doing some sort of activity throughout, I do, whether there's any science into that or not, or whether it's, you know, old wives tale, I do genuinely feel you will recover quicker, and it makes the treatment, I would say it doesn't actually make your treatment any easier because everyone would say to me, you'll fly through treatment because you're so fit. And actually I felt compared to other girls that I spoke to who were a bit bigger than me, because I am quite petite, but the people who had a bit more weight to them and who were less unfit actually recovered a bit quicker because they had like the resources in their body, like they could afford to lose a bit of weight and they just had that resource, those resources where like I didn't. So when I started losing weight, like I don't really have the weight to lose. And that then made my recovery even harder because I didn't have those resources to kind of keep like building on. So like after my surgery, it's funny, you think you're going to lose all this weight from the surgery, but actually the amount of weight you lose is quite negligible for all those organs. Cause they're actually not that heavy. From the day I went into surgery till I got home, in 12 days, I lost something like 16 or 17 pounds in 12 days. And when you're only eights though and you don't really have that 16 pounds to lose, especially that quickly. And it took me just over a year to put 11 of those 16 back on. And I've never managed to actually get back to my original pre -surgery weight.

Sarah (14:06.542)

Wow.

Siobhan (14:26.774)

Yeah, it was like eight stone for me and I kind of sit about seven twelve, seven thirteen. I just, no matter what I do, I just, I just can't get back to it. That's just where I am now. But I'm on this side of the grass, so I'm quite happy.

Sarah (14:40.91)

But it is, and I've talked to a lot of people about things like prehab, and we know that prehab is a big thing before any surgery. But like you're saying, having an active lifestyle, being fit, moving regularly, whether it's exercise activity or whatever, it's kind of like, we need to be thinking about it, it's almost ongoing prehab, just in case. As I was speaking to someone else, I was saying it's future -proofing your health, because if you don't need surgery, if you don't have anything happen, then great, you're still fit and healthy. But if you do need it, it will have a big impact on your recovery and things like that, as you're saying.

Siobhan (14:47.446)

Yeah, that's almost the only thing we have.

Yeah. That's a bonus.

Yeah, I also think if you're typically active before, you almost just have it in you. That's like your challenge. You know, like if you go to the gym and lift loads of weights, like you're always looking for that extra pound kilogram to lift more than however many weeks or months before. So like for me, after my chemo radio brachy, well, especially after my brachy, because that was tough in itself for anyone who's had brachy, they'll know.

Like, I remember coming home on the Wednesday night, yeah the Wednesday night, and I said to my mum, by Sunday I want to have walked to the salt bin. So there's a grit bin that's kind of halfway between our house and our next door neighbour. And she was like, I don't think you can do that. I was like, well watch me. Like, that's the worst thing you can say to me is, I don't think you can do that. I'm like, well, I'm gonna do it. So I mean, from my front doorstep to the grit bin, it's probably about 15, 18 metres if it is that. It's probably not even as far as that.

And I remember getting to the end of our driveway and I've been just been like, that's really far away. Like, you know, it was like another seven or eight meters I had to walk and I was like, maybe a bit more than I can chew here. And then like the next day I was like, I'm definitely going to get to the grip and I'm not going to hold on to anything. And then like three days later, I'd walked to my next door neighbor's gate and then the next, you know, a few days later it was the next one. And I just kind of built it up like that. So  And that was in the kinesium after my surgery. But that was innate to me. I know other people who have had maybe not as much treatment as me for the same type of cancer, but maybe a lesser stage in. And I understand it completely. They've just really struggled to get fit and active after just because of how the treatments had a physical and mental and emotional toll on them. And I sometimes think I just want to give them that push because I know it would really help them in so many different ways. I would give them that confidence back. They'd feel a bit better physically, emotionally, mentally, but it was really difficult because you're just not the same person after it. I just tried to pretend like nothing's happened, which is probably not always the best idea either. But I get frustrated that I can't be the same person, whether that's like I just get a bit tired doing what I'm doing or I just can't do as much. But I really make the most of it when I can. But you just have to find what works for you. If you were playing Tiddlywinks before, go back and play Tiddlywinks. You don't have to all be dancing or walking or whatever. That's what's relative to me.

Sarah (17:50.55)

Yeah. And this is that we'll talk about the impact on kind of everyday life a bit more in a minute, but I think it must be really hard when you've been active and you've never really thought about being active, it's just something you do. To have this sort of surgery and then to have your whole fitness level, your whole activity levels change, must be, I mean, you mentioned sort of the emotional toll, but that kind of psychological battering that you take with, which is, you know, it's not just, okay, I can build back up to my activity gradually, it's a whole different ball game, isn't it?

Siobhan (18:04.758)

Yeah. Just do it. 

And I think for me, partly because I was so young, at 33 to have the surgery, I didn't have many peers to talk to. So like I've got a really good close network of sort of four or five people I keep in touch with almost weekly, monthly in the UK who have all had a TPE, men and women, for different cancers. And it's so incredibly helpful. A gentleman, he actually does a very similar job to me and he does like marathons and obstacle course racing. So for me, psychologically, when I found him online, like, that that was just the person I needed to speak to because, you know, I knew then like if someone else can do it, I can do it. But if I hadn't found that sort of wee group of people, like the other people that were coming forward to share their stories with me, which I was so grateful for, you know, they'd been really overweight and they had like desk jobs and they weren't as active and they were much older than I was. And that's fine because their stories are also very helpful, but it doesn't make you feel any better because their lifestyle is nothing like your lifestyle. It's so incompatible, but at the same time it's like, well, that's another person I've managed to speak to. So it has its helpfulness, but not maybe its reassurance, if that kind of makes sense.

Sarah (19:39.566)

Yeah. What support were you given about becoming active again, particularly when obviously this is massive surgery, but particularly things like the fact that you've got two stomas now, you've got the urostomy and the colostomy, and there are implications for exercise with those, but also the fact that effectively you've been sewn up, which must have an impact on kind of like intra -abdominal pressure.

Siobhan (20:09.206)

Yeah, I mean, if I'm honest, I wasn't really given any advice. The advice very much was, well, just take it easy and see what you can do. And I was like, that's one of the worst things you can tell me because I'm just going to push my limits so far and then I'm going to break myself. But what I was highly warned about was you cannot get a hernia. Like, do not allow yourself to get a hernia, which is really difficult because you don't know what's then going to push that boundary into that territory. Like, for those of you who don't know, obviously having a stoma, you've got high herniation risk of the actual stoma herniating outwards. But also if your internal system kind of collapse in a bit because you've got less organs in there, so there's a bit more space for everything. So yeah, the intra -abdominal pressure is different. So because I've had so much removed, the best way to think of my body now is like from my belly button to my pubic bone, it's literally just an empty space.

They have built a shelf through just like fascia and like a little bit of fatty tissue to keep all my other organs upwards so they don't herniate down. So yeah, I didn't really feel like the post -surgery rehab, well actually, I'll be honest, I didn't get any post -surgery rehab. Like I had to go and seek that all out privately myself. So I went and I was working with a lady who I still work with to this day, like two years on. She does all my pelvic and floor ab rehab and she's amazing. And I can't sing her praises enough because I definitely feel like she got me back running. Like to kind of where I'm at right now because it was a completely different body. I remember my first couple of walks outside like, I don't know, maybe six or seven weeks.

I had to be walking at week eight because I had my brother's wedding to go to. So as much as we had a wheelchair, because I was still kind of going about in a wheelchair at that point, I wanted to be standing in family pictures without the aid of anything. It's just my stubbornness. I just wasn't going to have it. So, yeah, I remember even just trying to walk within those first couple of weeks. And when I say walk, it literally was like snail pace, holding on to my mum or my dad or both of them and shuffling my feet along and I could feel my insides vibrating because they were just under so much pressure, like so much judas, they were just like, what are you doing? And I just remember thinking like, how am I ever going to run again? Like, I can't even walk. Like I'm holding on to people like this is just insane. But it did definitely come quite a lot quicker than I was expecting it to. But again, maybe that was my post -surgery fitness or, you know, the years of fitness I had before probably. But that doesn't mean to say you can't not get there. It just might take a little bit longer. But yeah.

Sarah (23:18.414)

I suppose it's not, it's not a linear progression either, is it? It's not like, okay, here's where I am now. Yeah, there must be a lot of ups and downs. Like we, you know, we've talked good days, bad days and things like that. Yeah.

Siobhan (23:21.542)

Absolutely not, which is all unsetting. Absolutely. I mean there were days though I was like I need to go and do something on my own because whilst I'm very grateful to my parents for letting me stay with them that just became my bubble was like me, my mum and dad and my dog all living together and you know they wouldn't even like let me pick up a cup they were like we'll get that for you we'll do that we'll do this are you okay and I'm like I need my own space.

So that was also another motivation, like I needed to get out of the house, like I needed to kind of shuffle along and to me, it almost didn't matter if I was going to hurt myself because I just needed that space of no one talking to me and just being out in the fresh air and just kind of being left alone. And like all my post rehab that I've done privately has never involved the gym. It's me in my bedroom with a little yoga ball and a couple of bands and yeah, just doing body weight stuff and that's it. Yeah, like I just, my whole goal is to just be as balanced as I can on my new body to reduce the chance of a herniation and anything prolapsing that should or shouldn't be prolapsing but whether I would know if I had a herniation or a prolapse internally I don't really know. I don't know if it's gonna feel differently because I don't really have much sensation so I'm not even sure.

All I know is I just wear some stoma pants, so pre -marked as like high -waisted, compression -y, support -going -out pants. So I wear them when I do any exercise. I wear them when I'm at work, because also my job's very physical. And yeah, I feel that's helpful because it kind of stops everything moving. Yeah, that's kind of all I can say about that. I just kind of devise it myself.

Sarah (25:19.754)

What sort of activity do you do now?

Siobhan (25:24.15)

So like I say, my job is quite active, but my exercise of choice is running. So on the good days, great, I can run and it's amazing. But like I say, on bad days, like I literally can't get out of bed. And just even a couple of weeks ago, I had to cancel my work diary. I was just like, I can't come to work today. I'm really sorry. You know, reschedule people for a few weeks later. And I basically stayed in bed all day. Like I physically couldn't get out of bed. And like on days like that, I'm like on liquid nutrition so I have ensure powdered sashes from the hospital that like one of my parents will make up and I'll literally just sit and suck away on it like out of sports bottle and that can take me all day to have one sports bottle's worth of food like it literally feels like the world's moving in slow motion like I don't know I don't know the science as to why I feel like that I think it's just a combination of lot of aesthetic in eight months, a lot of radiation in eight months, a massively life -changing surgery. Yeah it's just a combination of everything and I know I'm going to kind of be like that for the rest of my life but like see you just make make use of the good days when you can. But yeah even just only to drink like one of those 500 ml drinks like that's all I've taken in all these like 500 ml but it's taken me all day to have it so you're then dehydrated, undernourished, so then whilst you feel better the next day you still have a bit of a slog to get, you know, maybe take a week to recover from one bad day because it's just taking you so long to kind of get through that. So, yeah, running is my thing and walking the dog when I'm feeling good, so yeah.

Sarah (27:00.398)

Do you think it's really, really important, you know, not just immediately following surgery, but like you're two years later to keep listening to your body, to keep really, you know, feeling what you're feeling and being realistic and saying, do you know what today is a bed day? There's nothing I can do about it. That must be hard to accept when you're active, but is that a really important part of the new normal?

Siobhan (27:18.07)

Good, yeah.

Yeah, I'm so unbelievably stubborn. I really do push past my boundaries. I think definitely two years, I'm slowly really starting to be like, right, okay, this is your limit today and you just can't do that. And I think initially it's really hard to just be like, no, that's your limit because you're just like, I just want to make the most of this because the last two weeks or something were a bit rubbish or the last week or whatever is relative to the person. But it's then you see what you're actually then missing for the days you're having to recover. So you maybe feel rubbish because you're just having a bit of a dip for like a week. But then it's then taking a week to 10 days to come out of that. So you've lost two and a half weeks when you could maybe have just lost a couple of days. So I'm always very aware that, excuse me, like if I am going on holiday or I plan to go on holiday and I've got a big event coming up, the couple of weeks before that I'm not saying I make sure I do nothing, but like I almost clear my diary of like extracurricular things so that I'm literally just doing my activity and my exercise and I'm just doing enough work to, you know, I'm very lucky I'm self -employed so I can work when I want, within reason. You know, I've started to supply a service to people, but I can dial down work if I need to, I can do less activity but enough to kind of keep going so that I know I'm going to be on top form to enjoy my break or enjoy the activity or wedding or whatever occasion I'm going to and then I can build it back up on the other end because like going to a function or something like that now is quite overstimulating. Again, I think it's an old wives tale like when you've had a big surgery you just can't absorb that sensory input as much anymore. I don't know but I just find like, you know, if it's very noisy, there's a lot of flashing light, you know, there's a lot of people, there's just a lot of stuff going on, like I just can't process it the same. And I feel like I just kind of take a step back and let everybody do their thing. And then I'll kind of just jump in when when it's easiest for me or I'll just like I'm just going to have a seat for 10 minutes. And then I just kind of sneak away and just chill out in a quieter place for 10, 15 minutes. Then I'll come back and you know, nobody's really missed you. It's just it's just you that's missed you. So yeah. But you know, I'm  slowly coming to terms with it, but it's hard. Yeah, it's hard. We had a civic event in our town just yesterday. It's a long day. I wasn't having a great day yesterday. I was just like, it would just happen to be the day that you just need to be fighting on all cylinders. But you know, you get through it. But I knew that people knew I was being a bit quieter and a bit reserved, but they'd also learn, and now it's two years post -surgery, that they know when I kind of sneak away to just leave me alone. And it's very much appreciated when I come over and be like, are you OK? But actually, that's just another stimulus to deal with. I just need them to help. I will let them know if it's really bad and actually I need help or I need to go home or whatever. But yeah, I'm finally learning my limits, which is probably very healthy because I just want to do too much all the time.

Sarah (30:32.002)

Is that, I mean, is this the kind of pattern that you've been told to expect for the rest of your life? Or is it something that gradually you will have more good days and fewer bad days? Or is it not known?

Siobhan (30:57.51)

I think it's actually a little bit of all three of those things if I'm honest. So I definitely would say I'm not the same person and I'm not going to be the same person because physically I've changed so much and emotionally I've changed so much. But when I do have a bad time now, it maybe doesn't last quite as long. Like, you know, I'm going to be getting an extra half day of feeling a bit better. You know, it just I come out of it a little bit quicker.

Sarah (31:05.902)

Okay.

Siobhan (31:29.206)

Yeah, it's a little bit of all those things because they don't really know because with most cancer statistics, you know, they can only count like five years post and then once you're five years, they're like, well, we can stop counting because you're still here. You know, like there's never an awful lot of 10, 20, 30 years, whatever. So it is a little bit of all those things. So a lot of it is trial and error. Like that's really the only thing you can do is just trial and error and your body will very quickly tell you if it's the right or wrong thing to be doing.

Sarah (31:41.678)

So is there any advice, like if somebody's listening or if somebody's listening who maybe has gone through this type of surgery or has known somebody who has, is there any advice that you would give them? Because I mean it sounds like exenteration, difficult thing to say. It is a massive surgery. It's not just a massive surgery, but the impact of literally having everything removed must be huge and there must be such an important role for support.

Siobhan (32:30.486)

Yeah, I always say to see through my cancer treatment and my surgery, it's actually much easier to be the patient because you're literally just trying to get through the next five minutes, the next hour, the next 12 hours, the next day, the next week, the next month. And everybody around you feels completely helpless and they just want to do everything for you. But like sometimes they just can't. Like sometimes you literally the best thing you can have do is just lie under a blanket and just be left alone.

Yeah, directed support is very helpful. Support that's kind of just, I don't know, guerrillas in the mist type thing is not actually that helpful because like if someone had said to me, you know, you should go to support group of like cancer survivors or, you know, storm about people, I probably wouldn't have went to it because I am ever the optimist and I'm very well aware that sometimes with chronic pain and chronic illness there can be a lot of negativity and whilst again I completely appreciate why that is and you know everyone responds to these things differently I'm quite a positive upbeat person and I know that wouldn't be helpful for me so what I found helpful was finding people on social media where I could sort of like say hi and touch base and then come away but like particularly like when a support group for me wouldn't be the right thing where somebody who maybe isn't is...

able to deal with social media they might find a support group better because it gets them out the house whereas I was already kind of encouraging myself to get out the house so I think it really depends on your scenario and situation but unless I would say the biggest thing for me is unless there's a medical reason why you can't do something I think you should just go and try it because I just think why not if you don't try it you're never gonna know.

I mean I went to Greenland last year. I mean that's against like every, I don't know, there's anywhere in a medical textbook they tell you to go to the Greenlandic wilderness, you know, once you've got the stomas. But I managed it and you know I actually was changing my stomas or changing my stoma bags literally in the in the wilderness. There's no bin bags, you know, there's no bins out in the wilderness, there's no public toilets, you know, I just got like a plastic Tupperware box like a craft shop that was completely sealable. So,

I would come out my tent in the morning, go into the big giant lavu that was like our communal sort of like living room, dining room type thing. And I'd make a joke about, I'm just going to go over here to the vanity unit. And I just changed my bags, like in the middle of the tent with a grass floor, you know, with like standing in my bra and pants, like in the wilderness and just changed my bags, put it in my wee black bag, put it in my sealable box and, you know, went on the next day. And it wasn't until we got back to the house in the village that and then put it in the sort of communal waste and dealt with it that way. So I think like, unless you try, you're never going to know. Obviously follow your healthcare providers advice. Like that's the biggest thing you can do to be safe and not end in silly. But yeah, I'm all for pushing the boundaries. And as long as those boundaries are sensible and safe and relative to what you were doing before, then I think why not? What's the worst thing that can happen? Because you would already not want to be here, so you might as well make a mistake.

Sarah (35:54.222)

So tell us then, your role is you are an orthopaedic massage and manipulation therapist. And I think I can probably guess what this is, but I'd really like you to explain it because I'll probably get it wrong.

Siobhan (36:11.574)

Yeah, I mean, it's kind of like a big mishmash of like soft tissue work, some peripheral and spinal manipulation, muscle energy techniques. It's kind of, I guess, if you mishmash like a massage therapist and like an osteopath or like a chiropractor for the physio, like I am none of these because these are all protected titles you have to have went to university to study chiro or osteophysio. But I work quite similarly to them.

So I have my own clinic and I deal with youngsters from about the age of five upwards to the oldest person on my books is like 92 and then everybody else in between. So yeah, dealing with long -term chronic illness patients, kids who have had a fall off a bike, off a tram plane, that kind of thing, recreational sports people, professional sports people and yeah, really everything in between. I love my job. My job's very social because I get to chat to people all day and I get to help them so yeah I love my job, it's great.

Sarah (37:19.822)

And what does the future hold for you? Do you think?

Siobhan (37:22.454)

I don't think about what the future holds for me. I'd like, I'd love to help other people who have to go through what... actually I'd like for people not to have to go through what I've went through because I was very unwell for a long time and was not listened to. Like I was always at the doctor, I was always getting, probably because of the business I'm in, like I was seeking out other therapists to help me because I had just back pain but this was not like I would try to explain to people like this back pain is not like normal back pain like I treat normal back pain all day every day and I would say to them you know if I was my own patient I would not be treating me because this doesn't sound right and I was really I was fobbed off for a very long time and it was a thin end of the wedge like you know you think you're okay till actually you look back and you're like my god I was a train wreck like I was not well I actually couldn't do the amount of activity I wanted to do. I was getting very frustrated and that actually took more an emotional and mental toll on me because I was like, maybe there's something wrong with me. Like maybe, maybe I am not mentally well because if I believe I'm this unwell, but everyone else tells me I'm not, then maybe there's something really wrong with me. Maybe I'm not safe to be with patients if I can't even control my own pain, you know, like I had a lot of real serious stuff going on between my ears that really made me question if I should have been doing what I was doing and was I as unwell as I thought. I actually was almost a bit of a relief to get diagnosed because I was like, yes, I am not making this up. I'm actually really unwell and finally something's going to happen. So I would like to raise much more awareness of like, you have to advocate for yourself. Don't take no for an answer if you really don't think something is right. Yeah, I just want to, I guess what I want to be accessible to people to a point where they can just get in touch with me and be like, you know, I'm getting a stoma surgery or I'm getting cervical cancer treatment. What's the chat like? How do I go about this? And I can only tell them from my experience and there is a whole community of people out there who might have a more similar experience to them or lifestyle that's maybe more appropriate for them. But I'm always happy to share my story because it might save someone's life. So I'm just so grateful to all the people that reached out to me when I needed help. I want to be able to give that back to other people. So if someone hears this podcast or sees my Instagram where I was a wee snorkeling last year with my two stomas, that's actually a big thing I hear all the time. can I go in the water with stomas? I'm like, well, why not? Yeah, of course you can. So yeah, why not? Just...

I just want to help people because people help me. So yeah.

Sarah (40:17.802)

And I think when it comes to activity, there's so much more that you can do than people realise. I know a previous guest of mine, Caroline, she's got a stone, she had ileostomy, but she does triathlons and ironmans. So she is in the water with it. And she said, there's a lot of support out there, but you really have to find it rather than it being given to you. So it's...

Siobhan (40:22.966)

Yeah, yeah, we'll not guarantee you definitely have to go and find it. And I think as well, like, I'm obviously quite niche because I have to. And even the reason why I have to is quite niche. So sometimes you read on social media and forums and that like somebody will have a bag where it's a colostomy or typically a colostomy or an ileostomy. A urostomy is quite a rare thing in itself.

Siobhan (41:04.214)

People will have one bag for their bowel typically and then maybe they because they've got an IBD or maybe they've got a bowel motility problem or whatever and then they maybe have a cancer or Fowler's syndrome or whatever and then they have to get a Urosthomy so they maybe have had to deal with one bag and then you know some years later or decades later they then have to suddenly deal with a second bag and I actually think having to deal with two from the start is actually probably easier because well nothing's going to get worse than that. So whilst it's difficult to initially manage the two and it's very overwhelming because you have no experience in it, like you just know it's not going to get any worse than that. So you know, you just make the best of what you've got. Whereas I sometimes think people who have had one bag and suddenly have to get a second bag or have their stoma placement moved. That is obviously very distressing because they think, well I've already had this once. Why, why am I having to go through it again type thing so yeah there is a lot of information out there it's just actually try to find it I'm not quite sure why it's so difficult to find but it is but once you find it it's it really is literally life -changing because it can open so many doors to you like if you were a swimmer before there's no reason why you can't go swimming now you know I was a runner you can definitely go running it's just little adaptations like I never thought about it like I've got like an anti -chafe you know roll -on thing I put like when it's hot in Scotland, not that happens very often, but if it's too hot and I'm a bit sweaty, get this anti -chief thing on. And I found when I started trying to run, my bags were chief in my skin. Just because I'm so small, my bags kind of overlap a little bit. And I've got, I wear children's bags just because I'm so tiny. Because adult bags just aren't suitable for me. And I don't know, I just kind of took a bit of a brainwave one day and I was like, well, anti -chief, this is what this is. I'm just going to roll it on my skin. But I also rolled it on the edge of my bags.

So every time I go for a run or like a longish walk now, I just put some of this roll on stuff and I don't, my skin's not sore anymore. And like that is such a simple thing, but there's nobody out there talking about it. So yeah, now like I remember something last year, I put a little Instagram post up being like my top tips for exercising with a stoma. And that was one of the tips was get some anti -tooth guard. Cause like, it's such a simple thing. And if that's the only thing that's stopping you from doing exercise, you know, like going buy some.

Sarah (43:30.222)

It's sometimes, but it's those small tiny things that make the biggest difference. And I know I will put, when the podcast goes out, I will put details of Sarah Russell. She actually specialises in activity and stomas. Yeah, she's really, really good. And, you know, she has a stoma herself, so she's more than familiar with.

Siobhan (43:30.358)

There's always a solution to the problem. It's so simple, but absolutely. Yeah.

I don't think I'd look at that. I didn't know that was a thing.

Yeah, it's always more helpful when someone who's got it is talking about it.

Sarah (44:00.366)

Yeah, but she's I will put the details out there for anybody who's who really wants it because she's she's got some really really good advice and support but again, it's like you say sometimes it's having that network where you can say my stomach bags chafing has anyone got a solution and then people will come and say why do this or I do that and it's like wow, there needs to be more of a kind of you know not just support for somebody with the stoma but the smaller details like to do with exercise and stuff.

Siobhan (44:14.966)

Yes, absolutely  It's things like, there's a specialist gynae dietician works in conjunction with my specialist team at the hospital. And when I was really struggling with nutrition post surgery and just try eating stuff, she kind of gave me some advice and then I kind of got in touch with it again when I started doing a bit more activity. And it was things like, I was never really one for taking gels before, like during prolonged activity.

But what I was really struggling with was even if I was doing shorter activity, like I just wasn't able to get the calories in before it and she never mind after it. And she was like, just take a gel before you run. And I was like, no, but they're designed for, you know, whilst you're exercising already. And she was like, says who? And I was like, yeah. And so the thing I do now is like, literally as I'm going to the door, I take a gel. And like, you know, and it blew my mind. Like just something so simple and it completely changed how I felt when I was exercising because gels get absorbed super rapid. So now if I know I'm getting ready to go out the door and I've not had time to eat or I've not been able to eat that day for whatever reason, have a gel completely revolutionized the way I was able to do exercise. And it was just so simple, like changing your mindset from you're supposed to have this during exercise at XYZ intervals. Well, I'm not a normal person anymore, so I'm just going to have it before.

I still have it due then when I'm exercising but having it before massively changed so for the better.

Sarah (46:00.974)

Must be because I do know people particularly when they're getting used to stomas who will almost avoid eating before exercise just so that they don't have any issues with the bag and actually a gel would be the ideal solution to make sure that you've got the nutrients but not the bulk.

Siobhan (46:10.366)

Yeah, because a lot of girls now have electrolytes in them as well as the carbohydrates so anyone who's got a stoma or stomas will know that it's so easy to get dehydrated and out of electrolyte imbalance. Sometimes they're no fault of your own, you know, sometimes we all eat something we shouldn't do and then we pay for it and suffer for it but yeah, a lot of people are surprised that I don't really drink very much water. But a day goes past and I don't drink any water. But I drink so much milk. I have loads of milk tea. I have my ensure drinks. Like I try and have a little bit of fruit juice, not a lot. And that is actually better because having for me, I'm not speaking for other STOMA patients, but having too much water, you're already out of balance just because you have a STOMA or STOMAS. So having non water things is actually giving you a bit of extra nourishment and it's giving you that electrolyte imbalance so I think that's actually better. I just don't work well on water and it's probably for the best, I don't really like water, I don't like the taste of it before so yeah, milk, you know, ensure that it's all good in my books. Chocolate milk, awesome thing, that's a great thing, I love chocolate milk.

Sarah (47:10.926)

I think, do you know what, this is such an important thing because it's not about telling people what to do, it's about people finding out what other people do and working it out, trying things to work for themselves. Because you can't say to somebody with a soma, don't eat this or do eat that because every soma is different, the way everybody digests is different. But what you can say is, look, when I had an issue with bananas off the top of my head because my dad had an issue with bananas,

Siobhan (47:36.598)

Yes. for your own lifestyle. It doesn't work yet.

Sarah (47:53.006)

When I had an issue with bananas, this is what I did and this is how it helped. It's giving people different options to try. It's not saying, do this. It's saying, here's a range of options. Give them a go, see what works for you and let us know what works for you because then we can add that to the list of things to try. Because it's so individual, aren't they?

Siobhan (48:08.086)

Yeah, absolutely. Yeah. So whenever I'm at work, I have like, I'm doing what I call a short shift versus a long shift. A short shift, I'll have a 500ml sports bottle with electrolytes in it. Like I will just not drink water, I'll have electrolytes and when I do a longer shift, I have a 750ml bottle instead of the 500ml. And even the difference in that was massive because whilst I'm not massively sweaty at work, it's just having that balance. Like nobody knows what their rest and electrolyte levels are unless they're getting extreme sports science testing which is offensive. So any normal person wakes up in a day they don't know what the rest and base level is so you know just get a wee electrolyte into you, top it up through the day that works really well for me. But you know it's all about again finding the brand you like, the flavour you like, finding the sort of mixture that you like and in touch with like I've found a brand that I think works really well for me.

And yeah, it is really about trial and error, but saying to people, you can't have this and you can't have that, again, it's one of the worst things because I know myself, I'll go and try it. Probably shouldn't, but I'll go and try it. The only thing I was definitely told not to do was weight training. So I was advised that definitely I could go and do circuits or circuits was fine for I think it's probably because the amount of stuff I've had removed and it's just such a big surgery. So wait, because I see people on social media who have one stoma. And typically, again, it's not sort of belittling it in any way at all. It's just a different reason why they've got it. But typically, if they're an IBD patient and they have a stoma, they will typically have an ileostomy. And a lot of them are big into weight training. And I'm all for doing what works for their body and, you know, their medical team's happy with doing. But my advice was you cannot lift weights anymore. It's far too much intra -abdominal pressure. It's too much pressure on the pelvic floor I've got or how much my pelvic floor has been butchered. So body weight exercise, great. Circuits, great. Weight bearing activity because I'm menopausal, great. You know, you just have to find what works for you and be sensible with it.

Sarah (50:08.078)

And I think sometimes again, you know, you're saying your pelvic floor is taken an absolute, yeah.

Siobhan (50:29.814)

about this understatement.

Sarah (50:32.654)

But obviously the pelvic floor is the bottom of the intra -abdominal balloon if you like. You've got your abdominals making up the tube, the sides. You've got the diaphragm at the top and the pelvic floor is very much at the base of it. So if that's just not functional, then any kind of weight training, there's no kind of security from the base of the intra -abdominal balloon. So it makes things like a prolactin or a hernia so much more of a risk. So it's there. However, if your pelvic floor floor is intact and you are working it everybody, no excuse, then it's a slightly different thing but again it's about getting specialist advice isn't it.

Siobhan (51:11.702)

Yeah, completely. One thing I've learned recently is I can't do cornering so well. So if I'm on a path that's quite twisty or quite sharp turns when I'm walking or running, I think my balance point is really bad now. So I was always quite clumsy, even as a child. But if you put me in a straight line, no problem. If you put me on something that's quite twisty just because I don't have that, like, abdominal pelvic stability, like no matter how much exercises I do to help with that, that's just not going to be the same. Because naturally the amount of radiation treatment alone has damaged so much stuff. I've got loads of necrotic tissue in there as well as a lot of surgical trauma. So yeah, just put me in a straight line, let me go, too many curves, not so great. But again, you're only going to learn that by going out and doing it. And that might not be the same for everybody, trying it yeah there's no rule book there's no there's no manual is there for one stone never mind two and I think it is just try things see what works but for me the really big thing here is you know make sure that you are that you've got support somewhere somehow that you can share you can either ask advice or you can share what works for you.

And like I say, like, we're all very friendly, like, you know, none of us bite. And if you literally just drop whoever you find, whether it's myself or someone else, you just, people are really friendly and they want to help. And if you just drop them a message on social media or on a forum, like people will give you good advice. It may not be the advice you want to hear, but their advice is usually well intentioned because they've either went through it and found it didn't work or, you know, they went through it and found it did work. But found then something else. So, you know, like one of the best things I actually got told about was like getting like something like a sunflower lanyard. So, you know, see if you like have to travel, whether it's an airport, a train station, whatever, like you're not sort of shouting it from the rooftops that you've got something, but like you're just letting people know, actually, I might need a wee hand in a wee minute, whether it's with my bag or actually I really need to go and sit down somewhere or, you know, I need a toilet or something to eat or whatever and it's just little things like that you know I think the Sunflower Lanyard cost me like £10 like I got a custom made one so mine's is like I need a toilet urgently I need a chair urgently you know I might need a hilt with my bags and like something sugary or you know something like that and and and even just having that like the comfort of having that is very helpful to know that you almost don't have to like expose your stoma's to be like excuse me can someone give me a hand like it's just like and it's little things like that, it's always the little things that are much more helpful than the big gestures or the big ones.

Sarah (53:59.758)

And it's, I think it's the little things that people find out from experience, not a manual or not, you know, from a surgeon.

Siobhan (54:04.582)

Yeah, absolutely. And it's like, you're phoning up a train station or your real company or a flight company and just being like, I've got this, this is my situation, you know, can we accommodate this? And I've done quite a lot of flights in the last couple of years since my surgery and you know, they're all very, their special assistance teams are amazing, they're so helpful. There's pretty much nothing they haven't came across. So yeah, like I always ask for an IOC because I know I have to go to the toilet more often just because I wear paediatric bags because they just don't accommodate adult output. So I just get an IOC and I can go to the toilet and not pester anyone as often as I want. And again, that's just literally from experience and speaking to other people. I'm like, guys, I'm going to go travel long haul. What do you do? And they're like, yeah, we do this. I'm like, OK, I'm going to give it a try. And it's worked so far. So yeah.

Sarah (54:58.19)

I think that's an absolutely perfect place to stop actually. I'm just so impressed by just the fact that you're keeping going and everything. But also it's the fact that you want to support other people. I'll make sure that all of your social media details are out there for anybody who wants to get in touch with you please do because it, you know, Siobhan's really got her experience and while it's not going to be anyone else's experience, there may be something in it that actually really helps. So please do get in touch. Any last comments?

Siobhan (55:34.71)

Yeah, just if you want to get in touch, just send me a message. I'll get back to you as soon as I can. I'll always be as open and honest as I can with people. And like I say, it's my experience. So I can really talk from mine. But even through my account, you'll find loads of other... because I follow a lot of other baggers and they have slightly different experiences too. So yeah, there's loads of us out there. You just have to go looking for us and we're all very, very nice people. So we'll help you as much as we can.

Sarah (55:49.262)

Brilliant. Siobhan, thank you so much for coming on and talking. It's been really, really interesting. And you've been listening to Creating Active Lives with me, Sarah Belythe, and my guest this week is Siobhan Coleman. Thank you again.

Siobhan (56:03.158)

Thanks for having me.