053 Activity with a stoma with Sarah Russell

In this week's episode I am speaking to Sarah Russell, a registered clinical exercise physiologist with a special interest in working with those who have bowel cancer/stoma surgery. 

We discuss:

• what is a stoma?
• the importance of exercise and rehab after stoma surgery
• the importance of signposting when recovering
• why people aren't recovering as they could
• how you can create a plan that works for you

The main message from today's episode is that there is recovery available, you can get back to exercise and asking for support is important to achieve your goals.

About Sarah Russell:
Sarah Russell is registered clinical exercise physiologist with a special interest in working with those who have bowel cancer/stoma surgery. Over her 30 year career she has obtained a masters degree and is the author of the Bowel Cancer Recovery Toolkit – the first book to be written about exercise and bowel cancer – as well as numerous research papers written in medical journals. She has presented at medical conferences all around the world and has trained hundreds of stoma nurses. She set up The Ostomy Studio – the first online clinical Pilates studio and clinic for people who have had bowel surgery and live with stomas and has worked with thousands of stoma patients around the world. Sarah has lived with a stoma herself since 2010 and is passionate about exercise in recovery, rehabilitation and hernia prevention in people who have stoma surgery. She is the project lead for the new ‘Best Practice Recommendations’ for exercise after stoma surgery which is due for publication in 2024. She is also a runner and has run over 75 marathons and ultra distance events.  www.theostomystudio.co.uk

Book – The Bowel Cancer Recovery Toolkit - The Bowel Cancer Recovery Toolkit: Recover faster with activity, exercise and lifestyle: Amazon.co.uk: Russell, Sarah: 9781781611364: Books

Facebook  - The Ostomy Studio Facebook

Website – www.theostomystudio.co.uk 

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.  She has worked with awarding organisations to develop qualifications and training and

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 (00:01.526)

Hello and welcome to this episode of Creating Active Lives where we have another Sarah. So not just me, Sarah Bolitho, but we have Sarah Russell who is coming to talk to us about exercise and stoma. This is actually a really, really important area because it's not one that's widely covered on courses or in information and Sarah really knows her stuff so this is going to be a really interesting episode. Sarah's a registered clinical exercise physiologist and has a very special interest in working with people who have bowel cancer and had stoma surgery. She's been you know working in this field for over 30 years like me we're both kind of alumni of the fitness field if you like but she's got a master's degree and is also the author of a book called the bowel cancer recovery toolkit, which I do recommend if you work with anybody with a stoma or has had bowel cancer.  It was the first book specifically, probably the only one still isn't it, specifically written for exercise and bowel cancer. She's also, she's you know written numerous research papers in medical journals, she's presented at medical conferences all around the world and has trained hundreds of stoma nurses and now is really working to educate more fitness professionals, physios and people in working with stoma. So Sarah welcome and tell us a little bit more about yourself.

Sarah Russell (01:24.542)

Well, thank you for having me Sarah. It's a real pleasure to be here. And, you know, it's lovely because we met, oh gosh, I don't know, maybe seven or eight years ago, I think, when we first met. And yeah, it's been quite a journey since then. So just sort of a little bit of background really, just sort of, yeah, so I, I've been in this fitness industry forever.

Sarah (01:37.05)

must be about seven or eight years ago.

Sarah Russell (01:54.776)

I specialised very much in clinical work. I'd worked in cardiac rehab back in my 20s. And then when I was in my late 30s, I had to have emergency abdominal surgery. And this was for a condition called diverticular disease, which I didn't even know I had. I didn't know anyone with a stoma. I'd never heard of stomas and I didn't even know what diverticulitis disease was. So there I was in hospital, having had this emergency surgery and now I was a proud owner of a stoma, which was A, quite a shock, but B, as a fitness professional, I was a bit like, okay, what now? So I lay in my hospital bed, naively expecting some fitness person or physio to come along with a training program for me to follow or maybe a group for me to join where I could rehab, a little bit like we do with cardiac rehab and now also with cancer rehab, but certainly back in those days. So we're going back to 2010 at this point. Of course that did not exist. No one knew anything about exercising with stomas and so after that initial surgery, I then had quite a lot of complications, had to have some more surgeries. I had five abdominal surgeries in total over a period of about 18 months. So it was a really, really grim time. And prior to that, not only had I worked in the fitness industry, but I also been a triathlete and a runner and, you know, I'd been really physically active myself. So I was really nervous about whether I could get back to that level of activity, whether I could run again, in fact, you know, what was possible. So I had a good old look around, looked at the research and discovered very quickly, there were no guidelines, there were no recommendations, nobody knew really what was safe and what wasn't. So I was left to sort of figure it out on my own. And so I sort of was working out various exercises, just kind of figuring what felt right, looking at some of the kind of drawing a lot from gynaecological surgery as well and other types of abdominal surgery and hernia surgeries. I remember a friend saying to me at the time, I hope you're writing all this down because I think we might need it one day. And she was right because sort of what's happened since is, you know, the sort of development of programs for patients but also for healthcare professionals. And right now the most exciting thing is that we are working on some national, which will probably become international sort of guidelines for stoma surgery after, yeah, for exercise after stoma surgery, which would be the first in the world, which is super, super exciting and kind of like, if I can get that done in my lifetime, then, you know, I'll have, I'll have thought my work's been done really. So yeah.

Sarah (04:45.014)

It sounds really exciting. And I know that you are also working on a course for fitness professionals, which as soon as that's available, I will make sure everybody knows about it. Cause it is an area that people are seeking information, both people with stomas but also fitness professionals, physios. And like you say, you know, while guidelines are just that, they are guidelines, they're not strict, rigid rules, they do help people just have a bit more confidence in working with people. So it's so important. So why is we're talking about exercise, we're talking about rehab for people who've had a stoma for, you know, a lot of the stomas, whether it's an ileostomy, which is obviously in the ileum and colostomy, which is in the colon, a lot of them do come about from colorectal cancers, but not always there are other conditions aren't there. So this is, this is not just, we're not talking about cancer specifically, we're talking about any kind of stoma operation. Why is it so important that people do exercise or do rehab after stoma surgery.

Sarah Russell (05:48.246)

God, where do I start? You know, we all know the benefits of exercise and physical activity, but I think, and like you say, there are so many different reasons why people have stomas. You know, and when I first had mine, I didn't even know what it was, to my shame. And I'd worked on the fitness industry for 25 years and I've never come across anybody. Maybe I had, but they'd not told me. But, you know people have them for childbirth injury, they have them for Crohn's disease, colitis, sometimes trauma, you know, spinal injury, colorectal cancer, bladder cancer, because of course stomas aren't just for the bowel, they're also for the urinary system as well, so people can have something called a urostomy, which is often put in place when someone has bladder cancer you know, as well as colorectal cancer, and also sometimes ovarian cancers. So there's a huge, huge range of medical conditions that lead to people may needing a stoma, whether it's, you know, a temporary stoma or whether it's a lifelong stoma. 

You know, it probably might help if we actually explain what a stoma is to start with, I think, before we kind of.

Sarah (07:02.534)

Yes, that's a good idea because I think we're kind of assuming knowledge and yeah, talk about what a stoma is.

Sarah Russell (07:05.822)

Yeah, yeah, so, yeah, so, so a stoma was basically an opening on an opening that's been created on the body and in the context of what we're talking about, it's on the abdomen. So we're talking about when we need to divert either the bowel or the bladder for a particular reason, whether there's a dysfunction or a disease or something wrong, to either remove it or remove some of it and then bring an opening to the abdominal wall surface where the contents of either the bowel or the bladder can drain out into a device, which is usually a bag of some description on the abdominal wall. And so it's created surgically, the surgeon will create a hole in the abdominal wall, they'll pull through some of the bowel or the bladder or the uterine, that they'll then create this kind of artificial opening. And so it's almost like creating a new anus on your abdomen, basically. And that's where everything comes out. So everything below that, below the stoma is then bypassed or removed, depending on the medical condition and depending on why someone's having it. So the person with a stoma will then need to wear a bag or some kind of device to collect whatever comes out of that hole. And you don't really have any control over it. So unlike your anus or your urinary system, you don't have any kind of sphincter or any muscular control. So you're effectively in the eyes of the medical world, incontinent. And so you need to have a device, a bag to collect feces or urine which comes out of the hole. And, you know, it's actually incredible, an incredible process because it saved so many lives. And in many cases, it's a huge improvement in quality of life, particularly for people who've had inflammatory bowel disease or spinal injury, so, and also childbirth injuries. So I think there's a lot of people who have better quality of life with a stoma. That's not the case for everyone, but for some people it certainly is. So that's basically a stoma. And there are three main types. We have a colostomy, a urostomy, and an ileostomy.

So colostomy is probably the most common, and that's probably the most common you'll see in people who are having colorectal cancer surgery. And it's, as it sounds, it's taken from the colon, so the large bowel, and it comes out onto the abdominal wall. And then you have an ileostomy, which is on the small bowel, and that comes out the terminal ileum, and then you have a ureostomy, which is the urinary system.

So yeah, that's basically a stoma. So back to your question, which was, why do people need to do exercise? Yeah, why is it so important? Of course it's so important for everybody. But if we think about people who've got some kind of bowel disease, a lot of the time that will come with some kind of malnutrition. It will come with some kind of weight loss. It will come with quite a systemic physiological change in that person's state, which often comes with a lot of muscle loss and a lot of deconditioning. So someone may be, they may be having chemotherapy, they may have inflammatory bowel disease, they may not be able to eat properly. They may have some kind of bowel blockage. There are all sorts of things, which can then lead to someone coming into surgery really quite deconditioned before we even start with surgery. In my case, I was quite, I say lucky, but quite lucky because I was fit and well and healthy, and then suddenly hit with this sort of medical emergencies. I actually kind of bounced out of surgery quite well because I was so strong and fit and healthy going into it. But I think, you know, certainly in my background was in cardiac rehab. And I think sometimes people are systemically unwell for quite some time, and they're coming in quite deconditioned, and we need to rebuild them. It's probably why there's so much pre-hab for upper GI and lower GI conditions, because we need to get people stronger and fit of going into surgery in the first place. So post-surgery, we've got to start rebuilding people, and they've had a huge trauma to their body. 

Abdominal surgery is major surgery and it has a huge physiological effect on the body. You know, if someone's in hospital just for a few days, they've got significant muscle loss, combine that with not being able to eat properly or having some kind of gastrointestinal type of surgery, you can have significant weight loss and muscle loss. So for me, that's really the key reason is to get people back to some kind of baseline. But the other sort of elephant in the room is this conversation around peristomal hernias. 

So a parastoma hernia is a hernia that develops around the stoma. And they're incredibly common. Some surgeons feel that they're almost inevitable. And estimates in the research are kind of anything up to 70 or 80% of people will develop some degree of herniation around the stoma. Now, unfortunately, what happens is people have their stoma surgery, and then they're told not to lift anything heavy and to be very careful because you might get a hernia. And there is a huge amount of fear around parastomal hernias. And so we know from the research that we've done is that people become significantly less active when they've had stoma surgery. But then if they're also diagnosed with a parastomal hernia, they become even more inactive. So we're looking at, you know, something like 91% of people are not meeting guidelines physical activity with stomas and with hernias. So it's huge, you know, it's a really, really big problem.

Sarah (12:58.155)

That's really shocking because that's almost the, I mean, it's well over the majority of people are not meeting the guidelines when we know it's so important for all health aspects, cardiovascular health, respiratory health, muscles, bones, everything, never mind the sort of impact on digestive system going deep in things. It's such an important part of staying healthy that for 91% of people to be inactive is really shocking, isn't it? So why aren't more people more active after a stoma?

Sarah Russell (13:16.319)

I think having experienced five abdominal surgeries and living with a stoma myself, it's a huge trauma to the body. And you feel very vulnerable. The messaging around stomas from the medical community is very cautious. If you were to do a Google search on what should I do after stoma surgery?, it's quite cautious, it's quite negative. It's very old and outdated. And it's very based on, you know, be careful, don't get a hernia, don't lift anything heavy. You know, it's really quite disabling in many ways. So I think first of all, people are getting those messages, they're reading that information. And because there's such lack of research and there are no guidelines, the medical professionals are at a loss on how to support their patients. So they're not giving patients really very empowering advice. So people are left to figure out on their own, but they're also kind of tussling with these fear messages, but also a feeling, a genuine feeling of vulnerability within their own body when they've had this major surgery.

And my feeling is that the majority of people actually never get back to their baseline when they've had surgery. I think so many people who have stoma surgery just never really make a full recovery. I read a really, I'm in the midst of doing a big literature search at the moment, and we're going through the research. I read a paper last week on some Canadian research. You can link it in the notes afterwards if you like, I'll send you a link. But it was talking about it was kind of qualitative research and it was some Canadian nurses interviewing patients. Every single patient in the study said they didn't feel like they could get back to the level of physical activity that they had before their surgery. And there isn't actually a reason why that should be the case. It's not easy, of course, but there's no reason why that should be the case.

And that just makes me so sad when I read that, because I think, you know, as healthcare professionals and fitness professionals, we need to be thinking about the long-term holistic health of people, building bone strength and muscle strength and avoiding other comorbidities. And the stone research is just one thing along that journey that we need to find a way to overcome. So we have to have better advice, better education, more empowering information, or positive information and programmes and support to help people.

Sarah (16:20.895)

Yeah, I think that's it. And I have said before with different topics is this isn't necessary. We're not saying all you medical professionals out there no need to become experts in this. But what we need to have is signposting. We need to have those pathways is right. You've had your stoma now. Here is the exercise advice that you know, here is somebody to go and speak to because a when a medical professional says go and talk to Sarah about your stoma about exercising. They're more likely to do it and trust you rather than you just sort of popping up on the internet.

But this is where we're not saying, you know, surgeons, everybody out there, become an expert. We're saying know who your experts are that you can signpost people to because you know, yeah, okay, they've had a stoma, they won't probably come back to you if that's your specialism, but they may well come back to one of your colleagues with heart problems or respiratory problems. So this is, you know, it is such an important pathway, like any doesn't, we've talked about cardiac rehab and now cancer, cancer rehab pathway, but we need these clear signposts, saying right, here's who you're going to talk to, here's where you go. And this I think is just so important.

It takes a while to get used to them. I know because my father had a colostomy originally and then progressed, progressed to an ileostomy. And each time it took him a long time to adjust his diet so that he could manage properly. He was given conflicting advice so he ended up kind of almost starving himself sometimes because he was so worried about something happening when he went out but exercise was he came to me and I found really limited advice out there but the one thing I did know is we need to work on it was almost like you know abdominal rehab after pregnancy is we need to work on gently and progressively bringing that core back to a reasonable amount of strength so that he could do other things. But it's not something that's like, oh, I've got a stoma, let's move on. It takes a while, doesn't it, to adjust. But once people do, what sort of things would you recommend people start to do to get back to activity?

Sarah Russell (18:43.074)

I think to start with what we have to look at is there are many different types of stoma surgery. So the surgery which involves just the abdominal wall, someone may have what's called a defunctioning stoma, but there's also within stoma surgery, the surgery which involves the pelvic floor. So sometimes people will actually have their rectum removed and they'll have their anus zone closed. And sometimes they have all their pelvic organs removed, which is, you know, hugely traumatic.

So we've got a huge variety of the types of surgery. And that would be my first, that's the first question that I ask a client when I'm working with someone is the extent of the surgery that they've had, because sometimes they don't necessarily always tell you. And you really need to know that because as a fitness professional, you need, actually how you work with that client will be very different depending on whether they've had very extensive pelvic surgery or not.

It's not just about the stoma. So first of all, that would be the first thing I'll say is actually identify a little bit of your baseline and try and find out the complexity of the type of surgery that they've had. But I think if we work from the basis that ultimately most people shouldn't be limited by their stoma. They can do anything that they like. So, you know, I know people who are you know, professional cyclists who are running marathons in, you know, extremely fast times, who are bodybuilders. You know, I've had nurses come in and say, I'm working with a guy who's a cage fighter, you know, what advice do I give him? So we've got people who are doing everything. Deep sea divers in the North Sea. Firemen.

Sarah (20:35.302)

So I was going to say we have a mutual contact who calls herself the ironostomy, Caroline Bramwell, who does triathlons and Ironman competitions with a stoma. And actually, she's a classic example because she said she did nothing before and now she's inspirational, you know, like a lot of people are.

Sarah Russell (20:38.446)

Yeah, absolutely. Yeah. And I think, you know, there are a lot of people out there that are, you know, and that's really in the last sort of couple of years as well, we've seen loads of media about, you know, um, people, swimming the channel, people running marathons and, and that's fantastic because it needs to, you know, we need to show people that you can do all these things and it's possible and, and your life does not have to be limited. The bit that's missing is when you have your surgery and you've got this fear about hernia and you're feeling so vulnerable and you've lost all this weight, how on earth do you get from that to running a marathon or doing an Iron Man? And that's the bit that's missing is, is what are those steps in there? What are the priorities and, and really, you know, and the other big question as well is this question about peristomal hernia. Can we reduce the risk of peristomal hernias with exercise? And I believe that we can.

So there's two things, there's really about, yes, you can do anything you like, ultimately, but there are many, many steps along that road. And depending on the type of surgery you've had, it may be a longer road and it may be a more windy road. And if you've had a very straightforward part, you know, surgery with very little complication, it might be quite a short path. But it depends on the person, depends on the surgery, and it depends on the thing they want to do, like everything. However, I think for me, the most important thing that I do with my clients is work on their core. So step one, and we know this from our nursing guidelines, and this is something that is included in our clinical guidelines for stoma nurses is it's safe and appropriate for people to start working on breathing, pelvic tilts, knee rolls, that sort of stuff. Within three to five days of their stoma surgery. 

So things they can be doing in the hospital bed, things they can potentially be doing when they get home. People are fast-tracked out of hospital now in five days. So they get home and it's not lying on the sofa watching Netflix. I want them on the floor doing their pelvic tilts, doing their cat cows, starting to really get connected with those deep abdominal muscles. And this is within the first couple of weeks, right? So that sounds like a really tough love message, but it's so important that we get those core muscles reconnected and working and so people feel less vulnerable and they feel a bit safer to then go and lift a kettle or pick up their baby or whatever it might be that they want to do. They feel safer because their core muscles are kind of fired up and working and they've made that kind of neuromuscular reconnection with them.

Sarah (23:33.346)

Can I just say the one thing that really, really stands out there, and I think it's something that everybody should take on board is connecting with those muscles again, because for a lot of people, they may not have been that connected with them in the first place. And it's like pelvic floor as well. It's knowing where they are and how it feels to engage them before you even start kind of putting pressure on them with movement.

Yeah. It's just being able to, it's knowing where they are, like you say, reconnecting or connecting with them and just making sure that you are aware of where they are and what they do and how it feels before you start putting them under any additional stress. And like with pelvic floor, it's something that a lot of people struggle with at first because they're like, I don't know if I'm squeezing the right muscles. And it's because they've lost that connection. So I think that's an important factor, isn't it? Is rebuilding that connection

Sarah Russell (24:25.674)

Yeah. I think, I think you're absolutely spot on and that's exactly it. So when we've had trauma to the abdominal wall and very similar to when we've had, you know, pregnancy and giving birth, we've really lost connection with those muscles that, you know, the brain muscle pathway is really dysfunctional. We just, it's really hard to feel those muscles working and because that's the basis.

Sarah Russell (24:53.63)

So one of the most important things that if, if you can work with a client pre-surgery and teach them those exercises, get them to fire up their transverse abdominals, get them to work with their pelvic floor, get them knowing what those exercises should be like when they go and do them post-surgery, they're gonna know what to do. And that's hugely powerful. We did a clinical trial over COVID.

And we just published actually in December called the Holt trials, the hernia active living trial. We looked at people who had developed parastomal hernias and we worked with them for 12 weeks, gave them sort of clinical pilates type exercises to do. Some of these people had their stomas for 40 years and they've never done any kind of reconnection exercises because they've been told don't do abdominal exercises.

And so as we all know, there's a huge range of abdominal exercises out there. You've got everything from a pelvic tilt through to a Russian twist. So it's kind of really breaking that down a little bit as well and that connection phase has to come first. Absolutely, 100%.

Sarah (26:10.422)

That's it. And this is where prehab, you know, for so many different types of surgery now, it's becoming much more the norm is either getting people fit enough for surgery, which is important, but also, like you say, with particularly when it's to do with the core, it's knowing how to, it's having that connection in place beforehand because it will just make it so much easier afterwards. Is there anything people shouldn't do?

Sarah Russell (26:38.94)

I have like a little assessment test with people. If I notice a dysfunctional breathing pattern, so I get them to do some diaphragmatic breathing would be kind of my first starting point, whether they've had their stoma last week or 50 years ago, I get them to do some diaphragmatic breathing. I start looking at the way their abdominal muscles are working, how they've got control and I get them to do a number of things. I'll get them to pelvic tilt, get them to do maybe, yes, breathing, see if they can get a bit of connection through the transverse abdominals. If they can connect on an exhale. If I observe a dysfunctional breathing pattern, so they're really blowing their belly out, I kind of go, right, we need you to stop. You don't have control over these abdominal muscles. You're creating too much intra-abdominal pressure. If you go and lift something heavy. So with those clients it's not so much what they can't do. It's really about slowing them down and getting those things in place first and making sure their core is working correctly. And then we can start to strengthen it. Then we can start to add some load to it. And we can go back to those what look like more familiar core exercises and build up from there. 

So is there anything people shouldn't do? Is the thing that really bugs me is people have their surgery, they do nothing for six weeks, the surgeon signs them off and says, right, go back to normal. And then they bounce back to the gym and go and do a plank. And that would be the worst scenario because they haven't gone through those steps of kind of like rebuilding, you know, yeah. And without that connection and without that awareness of what those deep abdominal muscles are doing on a dysfunctional core and on a pretty deconditioned body, you're probably going to increase your intra-abdominal pressure to the point where you may actually increase your risk of hernia. So for me, it's this step-by-step process. Get the connection, build it up with things like leg slides and knee rolls and cat cows and build that strength before you start rushing back to those sort of classic core stuff. Yeah, that would be, that would be kind of my big no, but eventually I'd say that people can do pretty much anything.

You know, years ago, if you'd asked me that question, maybe let's say six or seven years ago, I would have said, hmm, I'm not so sure people should do planks, or I'm not sure people should do brush and twists. There's too much pressure. But I found through my own practice, personally, and through the work that I do with clients, that actually those things are possible if they're done correctly, they're done with nuance, they're done with a correct buildup.

And actually they have a really valuable place because we need that core probably to be stronger than it ever was before and to stay strong for the rest of people's lives. It's not enough to just, oh.

Sarah (29:31.69)

Yeah. But it's that build up, isn't it? It's building up appropriately.

Sarah Russell (29:37.802)

Yeah, yeah, absolutely. But people don't know what that means. And, you know, listen to your body and build up slowly probably isn't a hugely helpful message. They need a bit more structure than that.

Sarah (29:51.646)

Yeah, I mean, having worked a lot with postnatal women and I always find that's really good because the nature of pregnancy, your abdominals change. And for a lot of people, they'll say that they've ended up with a better core than they've ever had because they've almost gone right back to the beginning and started again. And they've knocked out all those bad practices, all those bad habits. And because they've done it slowly, gradually and properly, they've ended up with a really strong core as opposed to one that's kind of stronger but weaker at the same time, if that makes sense. And I think this is the key thing, isn't it, is you wouldn't be a runner, have a year off running and then go and try and match the same time that you were running before. You would come back into it gradually and it's the same as anything, isn't it? You start where you are right now and you build up gradually from there ideally with the advice of somebody like you who can explain, not just say well we're going to start at the beginning, it's like this is why we're starting at the beginning, this is why it's important, because I think sometimes we don't explain the why necessarily.

We'll say, right, this is what we're going to do, but we won't really get into that. And this is why it's so important that we do it this way, because that can really help people say, right, okay, yeah, I'm prepared to take a bit longer, because I know I'll get better results rather than. And you've probably seen it in pilates, you know, people who start at intermediate level because they're fit, don't get the same results as people who start right at the beginning and take it slowly. They get much better results. And it's but it's that explanation, isn't it? It's making sure that people really understand what you're doing and why to kind of increase patience. So what's the biggest challenge then when people who've got any kind of stoma? What's the what's the kind of biggest challenge? Do you think when it comes to exercise? I've got a feeling I might know.

Sarah Russell (31:40.177)

I think it just boils back to the core again. And it's this fear, it's the fear of hernia. And I'd say that that's the underlying thing that everybody talks about. I'm scared of getting a hernia. And actually, hernias are just such a gray area anyway. The terms of the way in which they're diagnosed, in terms of their significance, in terms of the symptoms people get from them.

You know, if you have a hernia in another part of your abdomen, let's say you have an incisional hernia somewhere, or you have an inguinal hernia or an umbilical hernia down the midline, they'll often, you know, be surgically repaired and someone, the surgeon may put some mesh in there or they may create a nice incision and it's fixed. But with a parastomal hernia, that's never going to happen because you always have to have a hole for the bowel to come out.

So the hernia thing is really, I'd say, the biggest challenge. And there's sometimes now, I might go and do an exercise or I might try and lift something or say like a pull-up. I've been trying to build up my pull-ups and I'm not very good at them. So, but I've got like a banded pull-up, some assisted ones, building them up. If I just strain a bit too much, that night in the next morning, I can just feel some tenderness around my stone. It might just feel a little bit more bulgy. Whereas if I'm maybe doing it, I pull down in the gym, for example, it's a less sort of full body movement. And so there's less straining goes on in the core. So there's the odd exercise that I do that I think, now I'm working on a body that I know my body really well. I'm a fitness professional. I know what I'm doing.

So I kind of then extrapolate that to somebody who really doesn't and doesn't have any connection of their core. They don't have it. Their abdominals are really flaccid and soft and they don't even have the ability to connect and engage with them. And they might go and lift something innocuous in the house, like a basket of laundry or something. I had a client come down to see me and his wife was really crossed because he'd been going water skiing. And I was like, okay, well water skiing's all right, and he was fine. But what he was doing was lifting this huge, heavy jerry can of petrol up to kind of chest height and then tipping it into the boat. So the water skiing wasn't the issue, it was this heavy can. And he'd basically developed parastomal hernia. Now we don't know why, but it's likely that his lack of core strength and his lack of, you know, he'd done the classic rest for six weeks and then go back water skin, because his surgeon had told him he was better and he could do what he wanted. But we have to get the core strong in order to just do life, not just, you know, and that's, that's the biggest challenge, I think, is how do we exercise the core in a way which is safe, which is appropriate, which is accessible for all sorts of people and to get it strong enough. And we don't really know what strong enough is. Having done this for many, many years now, I actually think we do need a really strong core to reduce the risk of hernia. So I'd say that's probably the biggest challenge. Couple that with these, you know, fear that exists around, don't lift anything heavy, wear support belts, and you might get a hernia and blah, blah. So yeah, I'd say that's the biggest challenge really.

Sarah (35:27.022)

Yeah, fear, and it's, the core is so important, you know, people say, well, I'm worried about that, so I won't work my core, but I'll do my squats and I'll do my bicep curls and my chest presses, but you need a strong core in order to do those, and it is so important. Tell us a little bit about the ostomy studio then, because I think this is, this is another interesting thing that you do.

So the Ostomy studio was something I set up in COVID when I suddenly realized that I would be able to access, you know, people, previous to that, people had just been coming to see me in person. So I was quite limited with my, with my sort of network. So I really wanted to be able to reach out. Now I'm, I'm really, I was really nervous about recording myself on video. It's just the most horrible thing. I'm no Joe Wicks, that's for sure. So I was really terrified about having to do it. So I thought it's going to bite the bullet and do it. And so I set it up in COVID and now I teach online clinical pilates to people who've had stoma surgery. And actually all sorts of abdominal surgeries, not just stoma. So I'll sometimes get people who've had a gynae surgery or they've had bowel surgery, but they haven't got a stoma. So there's all sorts of people actually. So I have classes that I teach online and I've got some prerecorded video content which I'm developing as well. So, you know, there's all sorts of, and it's based on clinical pilates, but it's very rehab. So we do some leg strength, some balance work, all sorts of things that are in there.

So yeah, so that's something that I set up. And as far as I know, sort of doesn't happen anywhere else in the world because I get people from Singapore and Canada and Australia and America all coming to do classes, which is really cool and really fun. So, so yeah, but yeah. Thank you. Yeah.

Sarah (37:14.43)

I'll make sure the links the links there, but definitely, you know, it is something to look into. And I think as well, one thing I do want to highlight is the fact that, you know, your stomach hasn't stopped you, has it? You are a runner and you, you've run quite a lot of marathons over 75. Yeah. Which is quite a lot, but you've also done some ultra distance.

Sarah Russell (37:31.47)

Um, 75 marathons, yeah, of which 65. Yeah, so, so before my surgery, I'd been doing Ironman, triathlon and running marathons. It was fairly, fairly competitive. And then I had my surgery and I genuinely thought I wouldn't be able to do those things again. I don't know why, but somehow I felt that I had some kind of disability.

I've often reflected on where that came from, where did that message come from? Why did I believe that? I reached out to a chap at the time who just climbed Mount Everest and he had a stoma. So we're going back 14 years. And I got into some email chats with him and this guy had just climbed the seven summits culminating in Everest and he had an ileostomy. So I thought, oh, well, I'm probably able to go for a run then. So after I'd worked on my core and gotten over myself, realized I didn't have a disability, I just cracked on with it really. Yeah, so 65 marathons since my stoma surgery. And lots of ultras. Didn't really get back into doing triathlon, kinda lost the love for that, but I tend to do kind of stage ultras and other stuff now, which isn't actually always that easy with a stoma, but I found ways to make it work.

Last year I did an event called the Cape Wrath Ultra, which was 400 kilometers through Scotland. And I'd worked up to five years, never thought I would be able to do it because it involved camping and being in, it was every possible challenge you can imagine for having a stoma was, it was there. And it was, yeah, I think I've still got PTSD from it actually, but I did complete it. And it was really, really hard.

But yeah, I tried it in, I think it was like 20, yeah, 2022 I tried it and didn't finish, came home in a grump and then I thought, I've got to go back. So I went back in 2023 and completed it. So yeah, I was pretty pleased with that, but it was, yeah, 400 kilometers over eight days. So it was about 30 miles a day through the Scottish Highlands. Yeah, it was a couple of 40 mile days. It was really mad. But anyway, yeah, so it doesn't stop me.

Sarah (39:41.15)

Well done. You've also done the Trans Rockies Run, which of course is a massive endurance event. I mean, I know it's not long, but it's a toughy, isn't it? Because you're not only... It's not only a distance, but it's also the fact that you're at, what, 11,000 feet.

Sarah Russell (40:04.151)

Yeah, so the altitude and you know, I'm quite a sicky person. So I get sick quite a lot, which my husband just gets really upset about. But we're used to it now. Altitude or distance or heat generally makes me throw up. And I don't know if it's a stoma thing or if it's just a thing thing, but it's just annoying. And I've tried all sorts of ways to get around it. But I think, you know, it is challenging because with an ileostomy, when it comes to exercise, you have to consider things like hydration. And as you know, from your dad, you know, your diet is different and the advice you get about diet. So there's quite a few challenges when it comes to, if we look about athletic performance, having a stoma and the implications of putting that together, like a bit of a, it's like really throwing, you know, throwing a jigsaw puzzle in the air and trying to put it back in a different way. And you've got to figure out what works for you and everyone's very different.

Sarah (41:10.982)

I think that's a really important message isn't it, is you've got to kind of take it, do it your way and work out what's best for you but with appropriate advice and support and I think that's one of the biggest things. I remember you saying on that course many years ago that you know if people are having problems with their bags, if they're having problems with the seals, go and get the support because these days there are so many options that shouldn't be happening.

But I think a lot of people just put up with it and that's what stops them being active is they don't trust their bag not to come away, to leak or anything. And that is something I remember you saying really stuck with me is if that's happening, go back to the team and say, right, let's try something else. Because you know, the more active you can be, the better it is for holistic health, never mind your actual core as well. So is there any final message you would like to give to anybody who's out there who either lives with somebody with a stoma, has a stoma, or is having surgery and potentially will end up with a stoma?

Sarah Russell (42:05.163)

Oh gosh, there's so many things. I mean, this is like, you know, I'm on my little soap box here. I love it. I'm so passionate about helping other people navigate this journey and get back to a point of, of not just a baseline, but how to thrive and how to be as holistically well as possible. And I sometimes say to people, you know, if before you treated your body like a Ford Fiesta, after stoma surgery, you kind of need to treat it like a Ferrari, and you need to really look at the food you give it, you need to look at the nutrition, the hydration, you know, and you need to put things in place to make you, to really make you well. And so you don't just exist with this stoma, you can learn to live a really healthy life. And I know that's not possible for everyone because of the medical condition that they have. And some people have a lot of challenges and it's really tough for some people. You know, I've worked with thousands of clients now and I joke that when I first had my storm, I didn't know anyone and I kind of feel like almost everyone in the UK now with a stoma, it's kind of crazy. But I've had the privilege of working with people all over the world and seeing so many different cultures, but so many different experiences and so many different medical conditions. And some people have a really tough time, but I think there are always ways to overcome some of those challenges. And I think when we think about health, we have to think about our long-term health.

And we have to still think about bone health and other co-morbidities and try and keep ourselves as well as possible with our stoma and not let it stop us from being healthy. Yeah, that'll be pretty much my finishing piece, I think.

Sarah (44:20.738)

Brilliant. I will make sure that all the ways you can contact Sarah are in the podcast when it comes out. But Sarah, Sarah Russell, thank you so much for coming and talking with us. I think it's a really important area. We actually have a contestant currently on Dancing on Ice who actually has a soma. So hopefully that makes people realise that you can do things. And as you say, it's different for everybody, but you can probably do more than you think you can.

You can almost certainly do more than you think you can, but do get support, do get advice and do get in touch with Sarah if you need to. Thank you again and this has been Creating Active Lives with me, Sarah Belytha and my guest Sarah Russell. We will see you again very soon and in the meantime thank you Sarah for sharing all of that. It is really, really important and really interesting.

Sarah Russell (45:16.686)

Thank you so much pleasure to be here.