Sam rounds up the last 24 episodes of Can I Butt In? We take a look back at each episode, our guests, the topics, and insightful conversations with bowel cancer and bowel disease patients and researchers.
Can I Butt In? is taking a break! We’ll see you again later on with a new host and a range of new guests and themes to dig into.
Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it. I’m your host, Sam Alexandra Rose. I’m the Patient and Public Involvement Manager at Bowel Research UK, and as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Hello everybody and welcome to what is actually our last Can I Butt In? episode for a little while. So this is the last episode that I’m going to be hosting for now, and we may come back later with a new host, new topic. But for now what I wanted to do is to round off this season of the podcast with a little bit of a roundup of all of the episodes that we’ve done so far, because we’ve done 24 of them. And it’s been so great. It’s been such a good project to be involved with, to host, to organise and I’ve talked to lots of great people, heard from lots of different perspectives, spoken to patients, clinicians, researchers, and I’m just going to go through every episode that we’ve done so far and have a bit of a chat about it and yeah, what I thought about it and what we covered and all of that sort of stuff. And sort of be a nice tidy way to finish off for now. And so let’s get stuck in.
So our first episode back in September 2023, we started off with Charlie and Sharon and we did an episode on pelvic exenteration and quality of life. So we had our guest, Sharon. Sharon is a patient who’s had pelvic exenteration surgery and she’s had experience with something called empty pelvis syndrome, which Charlie explained. So Charles West is a researcher funded by Bowel Research UK, and he is doing research into the empty pelvis syndrome, which is something that happens or can happen when somebody’s had pelvic exenteration surgery. So perfect exenteration surgery is a really big surgery that removes all sorts of organs in the body because of the cancer and where the cancer is. And having that number of organs removed can have an effect. It can lead to side effects and Sharon talked about her experiences with that, how it affects her life. So we talked all about quality of life after pelvic exenteration surgery and what was really great about this episode is listening to Sharon and Charlie together because they know each other, they know each other in real life. They met while Sharon was in the hospital, and Charlie introduced himself. Talked about the research that he was doing and would she get involved and she has. She’s been involved in research and continues to be. And so that’s a really great relationship to hear about and to see develop.
Sam
And what is actually removed for? For people who aren’t familiar with the pelvic exenteration, what? What is it that they take out?
Sharon
OK, I can imagine it might be different for some people to others. I’m not quite sure on that one, but my personal experience that I had taken out was I had my bowel, my vagina, my clitoris, my uterus, everything that’s in the pelvis was actually physically removed, including part of my pelvic bone and also my pubic bone. Part of that was removed because the cancer was millimetres away from that area and to make sure the disease hadn’t started feeding into there, part of that was also taken. Nerve ends were removed as well, so that’s why I have the difficulty now with walking and numbness in the tops of my legs. Yeah, so a lot, completely empty. Everything completely gone. So I don’t even have a belly button anymore, because the skin they use to sew you back up is taken from that area.
Sam
Oh so it’s just flat?
Yes, so I have a flat tummy. There is no bellybutton.
Sam
So the second episode that we did was on visual impairment and bowel screening and I did this episode with Eamonn Dunne. Eamonn is from Thomas Pocklington Trust charity and that’s a visual impairment charity. And what they’re looking at is the FIT test, so that’s the bowel screening kit that you get in the post when you reach a certain age and it’s, people call it the poo test. And you get a sample of your poo and you, you send it off and that’s the way of screening for cancer because it detects tiny amounts of blood in the poo. However, if you’re visually impaired, that can be a very difficult test to carry out independently, and people might not have the support around them to help them to carry out this test. Or they might not want to ask people to carry out, you know, it’s quite a private thing really. And so what they’re working on at Thomas Pocklington Trust is creating a FIT test that is more acceptable and easier for people to use who have visual impairment or who are blind. And so we had a great talk, not just about the FIT test itself, but also about all sorts of issues that can affect people who are visually impaired, hospital experiences and all sorts of stuff. So that was really interesting. And that’s a really core thing for the podcast really, is to shed some light on these things that people don’t really think about. Like if it doesn’t affect you, then it’s not something that really springs to mind. But it’s about looking at something like visual impairment or like the workplace, which we’ll talk about in future episodes and taking kind of a bowel-related spin on it. You know, what happens when you put these two things together? What happens when you have one condition and then you put bowel cancer or bowel disease with that, how do these things interact? How does that affect your life? Because people are so much more than bowel cancer patients or survivors or people with bowel diseases, and people have got lots of different things to contend with and going on in their lives. And it’s interesting to see how these things interact with each other.
Eamonn
Were I visually impaired or and or had dexterity issues, it would not be as easy as that because you need to be able to see to do this test. If you’ve got low vision, there’s probably ways around it using the current kit, but because of the, effectively could be described as a health inequity for visually impaired people based on some, a lot of discussions with people with lived experience that the rate of return of the kits amongst blind and partially sighted people we think, and again we’ve not done any detailed research on response rates because the data is not really available currently, but we think the rate of return from blind and partially sighted people for the FIT test is relatively low, so you know that means that you’re more likely than if you’re visually impaired, if that’s the case, to go on and develop symptoms, which we obviously don’t want people to do. And again, the problem with symptoms is you might not be able to spot the blood in your stools. So it’s really important to do the screening when you get the opportunity. So because of that, we have worked with our partners RNIB, the Royal National Institute for the Blind, who many listeners will know of already, and the NHS, to work on something called FIT aid, and this is a kit that is very similar to the existing FIT kit, but it comes with a few modifications that allow people with reduced vision and or dexterity problems to carry out the test more easily, and I have a prototype in front of me so, you can’t see it, you know, I could describe it in detail. It’s different from the current kit in that it has a flat tray, that way you can easily click the stick into the test tube. So it’s more easy to kind of, to do it cleanly without messing it up. It also comes with a what’s called a QR code, which provides a link to a website or and or video and audio content as well. So the idea is even if you can’t see, you can get verbal instructions on how to carry out the test.
Sam
So in episode 3, we did talk about the workplace. We talked about illness, disability, and the workplace. And I spoke to Matt Black, who has experience of bowel cancer, and he talked about his experiences of dealing with that while at work. And also on this episode was Steven Jones, who is the founder of Disability Connect, which is a mentoring scheme. He helps organisations to be more accessible to provide better accommodations to people who need them in the workplace. So he’s a wheelchair user with spinal muscular atrophy, but a lot of what we talk about applies to people who are disabled and people who have an illness like bowel cancer or other illnesses, you know, there’s so many things that illness and disability, commonalities there, especially when you’re thinking about the workplace and how illness and disability can affect your ability to work, how often you can work, where you can work. All sorts of things. So the three of us had a really good conversation. We talked about some issues that Matt had in his workplace. We talked about some common issues that Steve sees in his work mentoring organisations and that was it, was a really interesting and lively putting the world to rights, I believe I referred to it as.
Matt
As I got back to work in the September, there’s no question it took me time to adjust. I was really tired really quickly. I couldn’t do a full day’s work straight away. You know, there had to be this sort of adjustment and on the whole people were very, very good because they realised don’t push. I came back. Don’t push him. Just leave him to be and very, very empathetic. There are one or two scenarios where people weren’t as helpful, but I think that’s more human nature. And if people don’t know how to react and managers aren’t necessarily taught how to react and how to deal with people that have gone through an uncomfortable experience. If you think sadly in our lives when we lose people, how 95% of people will 95% people don’t really, they say sorry. Other people just don’t know what to say but look at the floor and maybe mutter something. So. So in the same way my message to anybody listening is if you know someone going through this scenario, if you have a colleague, if you have an employee or employer going through it, dress it up, head it out, you know, say how are you or even just send a text, send a message. A one line text makes all the difference to the recipient. It takes a minute of time and I know it’s embarrassing sometimes, just how are you doesn’t hurt, and that was the key. I did have a few. I had a scenario where I just got back to, I’ve been back at work up about a month and my line manager said I think we need to do your half year appraisal. You’re away in the summer when you missed it. Well okay, that’s quite interesting approach to take, not necessarily the approach I might have taken and it was very formal on Zoom. The first question of the day was have you met all your objectives for the year? And I just looked blank at the screen and said yes and this guy was meaning financially. He said how? I said I’ve stayed alive. Which completely threw him and I just hit it. Yeah, I faced it straight on. It should. It should never have been a position I was in, but I think I’d say listen, if you are, don’t be shy about talking about what’s happened. Don’t be embarrassed about it.
Sam
Episode 4, I got a couple of experts together and I asked some basic questions and then let the experts talk all about the gut microbiome. And you may know that the gut microbiome is quite a big thing for Bowel Research UK these days. It’s a big topic that we still don’t know too much about, so there’s lots of research being done in this area. We’re looking at it quite specifically. We recognise that there’s a lot that we can learn from the gut microbiome in terms of bowel diseases and how the microbiome interacts with other parts of the body. So for this episode I had Simon Carding and Adele Sayers as my guests. So Simon Carding is a professor of mucosal immunology at the University of East Anglia and head of the Food Microbiome and Health Research Programme at Quadrant Institute in Norwich and Adele Sayers is a consulting colorectal surgeon with a particular interest in IBD. So they had a great chat about how the microbiome can impact the entire body and IBD, and the benefits of having a healthy gut microbiome and keeping it healthy and all of that sort of stuff. So that’s really worth a listen if you’re interested in the gut microbiome.
Sam
It’s become such a hot topic recently, hasn’t it? There seems to be a lot of people talking at the moment about the microbiome. You see things on TV about it and on the radio and things. Why do you think that it’s gotten quite popular recently?
Simon
Because it’s essential for our health and well-being, in a nutshell. That’s what it basically comes down to. So I think we’ve understood for a long, long time the importance of our gut microbes in processing, digesting the food we eat. But we’re also uncovering other functions of the microbiome that are important for our health and in particular, its interaction with our immune system and keeping the immune system fit and healthy to protect us against infections invasions and also from other diseases due to abnormal immune responses. Autoimmune disease, for example, of which inflammatory bowel disease, or IBD, is one example.
Sam
Episode 5. I had a brilliant chat with Nigel Horwood, so we talked about organisation and self-advocacy in the NHS. Nigel has been a guest blogger for Bowel Research UK, so we drew on topics that he’s written about for us. He’s also a member of our PaRT network. That’s People and Research Together, which is our patient and public involvement network where we get patients involved in different research. And Nigel is such a fountain of knowledge for me and he talked about how you should do things like taking in questions with you to your doctor’s appointments, always ask for the same doctor, because that’s proven by research to be beneficial to your care. He had all sorts of great tips that you could really apply to any illness, I think. And Nigel has Crohn’s disease. I’ve had experience of bowel cancer. It’s finding those again, those common themes between people and those common experiences. And we had a great chat about being patients in, in the NHS and all of the wonderful tips that he had. So that is definitely worth a listen.
Nigel
What I would say if there’s just one thing to take away from this podcast is when you go for an appointment, have a list of the questions you want to ask, and maybe not just questions you want to ask, but maybe the questions your partner wants to ask, because the worst thing is you go in there. You have your consultation, you may get overwhelmed by it, especially if it’s probably quite a new thing for you. You come away and somebody says. And what about this? And you go. Oh, I forgot to ask. So I just say write the list and have it there. But it’s a good management tool. You can tell. I used to work in program management so I’m trying to use the techniques that we had. For managing mega projects into your health. If you’ve got the list, you can say to the consultant, here’s my list of questions, and then you’re setting the scene for that appointment until you get to the end of the list. The appointment isn’t over, so there’s no way to try and get you out the door after 10 minutes. Not that I’ve ever had that happen like that, but it set the thing for it. Here we are. Here’s the list of questions. When we get to the bottom, then we can actually finish the consultation. And the other thing is if you become emotional, which I tend not to, but I can understand how easy it would be to become emotional. And you’ll find it difficult to get the questions out. You can pass your list over to the consultant and just say this is what I want to know about. So it it’s really useful. So that is my top tip for dealing with appointments.
Sam
Episode 6, I talked about bipolar disorder and bowel screening with, well, actually generally cancer screening because we covered bowel cancer and also cervical and breast cancer as well. So again, this is an example of an episode where we take one thing like bowel cancer and another thing, so in this case bipolar disorder. And what happens when somebody has to deal with both of these things, because people do, and you know, you’re often you’re not dealing with things in isolation. People have multiple things going on. We deal with things together. So I talked to a researcher called Emma Tuschick from Teesside University, which is where I study. She is a doctoral candidate and a research associate there, and also Karen Manton. So Karen Manton is an expert in bipolar disorder based on personal experience. And she does research as well. So she’s part of that research team and they’re doing research into bowel cancer, cervical cancer and breast cancer screening. And what are the barriers to getting that screening for people with bipolar disorder? So it was great to have those two voices to talk about the research and also what it’s like from a personal perspective.
Karen
It is difficult sometimes because we don’t always know where a person’s at with their illness. If they’re managing and their illness is ticking along quite nicely, the chances are they’re probably gonna get it in the post. They’re gonna do it, they’re gonna send it off and hopefully everything’s gonna be OK. But we have to understand when you’re going through bipolar, we don’t know if that person who is getting the test is actually in the middle of an episode and if they are in an episode and if they’re in sort of the manic phase, the likelihood is when that test comes in the pores, it’s gonna go in the bin. And I know from personal experience that I just couldn’t deal with any post coming and when I was that way and very poorly, everything would get ripped up and I wouldn’t consider anything that come through the door. So I think we have to be aware of that side and in the same way, we also have to be aware that if they’re having sort of the depressive side of it. Again, they may not want to engage, so we have to look at all those kind of things. Those kind of factors that could prevent somebody from doing it. And I think we have to really consider that and how we can get around that.
Sam
Episode seven was on artificial intelligence and colonoscopies, and I had a great chat with Alicia Toon from Odin Vision. So we’ve done some patient and public involvement work for Odin Vision. We’ve worked together on this topic, so we’ve put together focus groups and had patients talking about artificial intelligence and colonoscopies. How do people feel about this technology being used when you have a colonoscopy and also how do people feel generally about AI being used in healthcare? Me and Alicia had a good chat about Odin Vision, and all of the work that they’re doing on that subject, and what it’s been like getting patients involved in that process.
Sam
What is the difference then between a kind of regular colonoscopy if you like, and the one that Odin vision is working on with AI?
Alicia
Yeah, so with the regular colonoscopy, the doctor will manually navigate the scope through the colon, and they visually inspect the colon walls for abnormal abnormalities such as polyps, you know, inflammations or any signs of diseases like colorectal cancer in this case. And then if any abnormalities are found, the doctor may perform biopsy or remove polyps during the procedure which they send off for inspection. And with our AI, so this incorporates the AI algorithms and computer vision technologies to help the doctor during the procedure and with the AI system it can analyse real time images and videos from the colonoscopy and provide immediate feedback to the doctor. So in in real time it may help identify these abnormalities that could be missed by the human eye or provide additional information to aid and decision making during the procedure.
Sam
Episode eight, I had a chat with Louise Usher about nutrition and Crohn’s disease. So Louise has also guest blogged for Bowel Research UK. She’s a Crohn’s disease patient and she’s a registered nutritionist. So again, she’s been able to talk about her personal experiences with Crohn’s disease and how she became a registered nutritionist. What that’s all about, how being a nutritionist has helped her to deal with Crohn’s disease, and how that knowledge that she has has helped. We talked about holidays in particular because holidays should be a really happy, relaxed time. But if you really have to watch what you eat, then it can be quite stressful because, I don’t know about other people but for me, holidays and food kind of go hand in hand. You know, food is a big part of a holiday for me. So we talked about how it can be difficult for people with Crohn’s disease or with other conditions when you really have to watch what you eat, you have to know what’s in a buffet at the hotel. What can you have? What can’t you have? What nutrition information is available to you? And the importance as well of individuality, because what works for one person in terms of what to eat and what not to eat is not necessarily going to be the same for somebody else, even with the same bowel condition. So that was really interesting to talk about.
Sam
Well, I’m glad to hear that it’s mostly well managed at the moment. Is there something in particular that triggers, say a flare up as it tends to be like certain types of food or what? What kind of tips that off?
Louise
For me, and this is, you know, the more that we talk, you’ll see I’m very passionate about the fact that there isn’t one rule fits all. In my belief and the research that I’ve read everybody’s body is so unique and so different to them. And when I’m speaking with patients, I liken it to like a cup almost. So if you’ve got a cup that you’re filling up with a bit of stress, a bit of lack of sleep, a bit of dehydration, and then the trigger food, all those things together might just tip it over the edge to cause a symptom. But yet one of those things on its own, your body could sometimes deal with that okay.
Sam
Next, I talked to Jacqueline Black about her research into IBD, stress, and creativity. So Jacqueline is a doctoral researcher at King’s College London with a background in health psychology, which is always really interesting to me. Some of her work is funded by Bowel Research UK and we talked about how IBD, particularly colitis, ulcerative colitis, can be stressful and how it’s a bit of a vicious cycle because colitis can create stress but also stress could potentially impact colitis. So you get into that kind of vicious circle of one affecting the other. And we talked about how people could cope in different ways and we talked about creative writing as well and how creativity could potentially help with that stress, which feeds nicely into my PhD work as well. So we had a great chat about that.
Jacqueline
I found that there were as many measures of stress as there were studies. And you know, there were seven different types of ways of defining stress. So as researchers, it was a complete… I don’t want to say mess, I want to say, uh that it was very difficult to make them comparable because every researcher was innovating in their corner and had their own ideas and. And what I felt, although it’s not directly reported in the studies, is that actually there’s been very little involvement of people with the condition to say in the context of inflammation, IBD, says this is what stress is, this is the collection of things that it is, this is how it appears. When this happens, that I know that’s stress.
Sam
In the next episode, I chatted to Simon Boddis and again we put the world to rights. With this one we were talking all about cancer and use of language. Simon was diagnosed with bowel cancer in 2020 and he has a permanent stoma. And we were talking about the nuances of cancer language. So what language does the media use to describe cancer and how do we feel about it? And you know, people talk about the sort of war language and the battle language, and a lot of people don’t like that. Cancer survivor, victim, there’s all sorts of words that are used to describe people. I think my bottom line is that people can use any words that they like to describe themselves in their own experiences. But I think we should be careful when we’re talking about other people because they might not want to be described in the same way and everybody feels differently about the language that we use around cancer. And that was really interesting to talk about and right at my street, to be honest.
Simon
When you have cancer, you lose a certain amount of control in your life because you don’t know about how it’s going to spread, or if it’s going to spread. Or treatments or whatever. So the things you can’t control are things like language about how you, how you talk about it. Those are the sorts of things you can’t control. So when that control is taken away from you and other people use language that you feel it’s inappropriate. It’s almost like you’ve lost. control over this, which is I think one of the reasons I feel so strongly about it is because, you know, having given up a lot of autonomy or giving up some autonomy and a lot of autonomy at times. You control what you can’t control, and one of the things you can control is how you describe your cancer and how you feel about your cancer and how you talk about your cancer. So I think I think that’s one of the reasons I feel quite strongly about this is because it is about control and I think most of people, most people I know with cancer who speak about cancer like to control what they can control because some of the stuff just isn’t controlled.
Sam
In episode 11, I had another member of the PaRT network with me, Pete Wheatstone, and we talked all about self-employment and bowel cancer. So Pete has experience of bowel cancer. He was diagnosed while he was self-employed. So we talked about his story and what his symptoms were, how he was diagnosed and the treatment. And all of the long-term effects and how that impacted his business and his self-employment. How does illness generally have an effect on people who work for themselves in terms of the financial implications? How much support you get because that can really be different when you’re self-employed compared to when you’re employed by a company. You can have different levels of support there and you have to think about how you’re going to communicate to your clients as well and tell them about what’s going on and making those big decisions as well. Those big financial and company decisions about what you’re going to do with your business. And again, it’s just something that people may not talk about very often or may not think about very much, so it was great to be able to highlight this issue.
Pete
I just wish there was some more guidance for the self-employed to help you think through these steps which does take a say a lot of thinking about at a time when you’re still reeling from a cancer diagnosis and probably not feel physically feeling well as well. So you know that’s probably what I’m here today. That’s my driver in appearing today. So what can we do constructively to help? And as I say, the guidance has improved in the time when I was diagnosed back in 2014, but it’s still too far generic in my opinion to be really useful. So looking around recently, a first suggestion is often made about you need to make a decision about your business. Are you going to continue it or are you going to wind it up? But how do you make a decision about your business if you don’t understand or can’t get information about or understand the impact that’s cancer or any other illness, serious illness is going to have or the treatment or its side effects for that not in the individual, but for the business. And I think that’s where some guidance would be helpful.
Sam
Next up, I did a Rare Disease Day special. This was for Rare Disease Day back in February, the 29th of February is Rare Disease Day, and I talked about some of the lesser-known bowel conditions such as CIPO, which is chronic intestinal pseudo obstruction. Mesenteric plexitis, Hirschsprung’s disease, metastatic small bowel obstruction, paediatric IBD, and enterocutaneous fistula, or ECF, and I talked about my ultra rare condition, constitutional mismatch repaired deficiency as well. So it was a bit of a run-down really of some things that you might not have heard about before in the area of bowel diseases.
Sam
Moving on then to Enterocutaneous fistula, or ECF, which I will now be saying for ease. This is an abnormal connection that forms between your intestinal tract, so your small bowel or your large bowel and the skin. So a fistula is kind of a connection that forms where it shouldn’t be forming basically. And this particular type of fistula forms between the small or large bowel and the skin, and that means that intestinal contents can leak through an opening onto the skin, which I mean sounds really painful and irritating to me. Just puts me in mind of when I had a stoma and when I was changing my bag and it would like the poo would leak if my stoma was being particularly naughty and decided to have a movement during the time in the morning when I was changing the bag and the flange and everything and it sometimes it would, the poo would get onto my skin and that was really painful and yeah. Not pleasant, not pleasant at all. So yeah, take off that on your skin to a fistula. Yeah, sounds pretty painful to me, so that is listed as one of the symptoms is the pain and irritation of this intestinal content leaking onto the skin. Also potentially dehydration due to fluid loss, diarrhoea if the fistula leaks significant liquid. And malnutrition, because nutrients aren’t being absorbed properly. So this is an uncommon condition, but it’s not extremely rare. It is rare to hear about it, which can make it difficult to find support and understanding and to research and to find research on it as well.
Sam
Next up, it was a joy to be joined by Steve Clark to talk about the nocebo effect. So Steve was diagnosed with stage 4 colorectal cancer in 2013 and he’s a really active patient advocate. He set up organisation called Strive For Five, which is a not-for-profit that hopes to give hope to other people with stage 4 cancer. And what we were talking about specifically in this episode was the nocebo effect. So this is kind of the opposite of the placebo effect, and it’s about how ideas or influences can impact how we think about cancer treatment and how it works. So that was, it was really interesting just to think about things like how doctors word things to us and what impact that has. For example, if people think that something isn’t going to work, then maybe they don’t try it, and that’s kind of a self-fulfilling prophecy because they don’t do something that could have actually potentially helped. It was eye opening to think about the different ways that our environment and what people say to us can affect the decisions that we make and the outcomes for treatment, for not just cancer but other illnesses as well.
Steve
The placebo effect is probably one of the best known facts in medicine. It’s well proven, well researched and talked about everywhere. Think most people, most lay people know about the placebo effect. Yeah, and it’s baked into research as well. So you have to do a placebo-controlled trial to get a drug through approval. So it’s a fundamental thing. If you think a drug is going to do you good or it’s going to help you, it’s more likely to do that. The nocebo effect is exactly the opposite. If you think a drug is going to harm you or it’s not going to work. Or it’s got no chance. Then actually it’s less likely to do you good. And it’s really, and this is where the phrase that you used at the start, I think is a really important, it’s this is all. About setting patients up for success. And the nocebo effect is a way of undermining potential success.
Sam
In episode 14, I talked to Olivia Rose from Ostique Connect and Ostique were talking about a new app that they’ve created for people with stomas, and they’re probably much further ahead with this by now, so it would be interesting to check in with them. But it’s a support platform for people with stomas. And it gives people the opportunity to talk to people. And get that one to one support. So chatting to people who have been there or in the same situation and just get some support really from other people creating profiles and saying who you want to be matched with and. And all of that kind of thing to really get somebody to connect with somebody who’s going to help you through the difficult time of when you get that stoma and beyond.
Olivia
So when you fill out your profile information, there is a question about whether you have a stoma right now. So like yes; no, but I will in the future; no but I did in the past. Because this is also very relevant for people who’ve had reversals and still want to be a part of the community and have a conversation around that. And then when it comes to what you’re looking for in a potential match, you can say I want someone who’s at the same stage as me, so perhaps your pre surgery and you actually want someone who’s also pre surgery so you can go through it together. Or I want someone who’s further ahead than me who can actually answer all my questions, negate my fears, give me some advice. And then those people will have also filled out a form to say whether they would like to be matched with somebody who wants advice, and they really feel like they have loads to share and a lot of people have said there’s so much I learned through my experience when I was by myself that I wanna give to other people so they don’t have to go through that. So a lot of people have signed up to the app solely for that. So it’s actually a perfect match for a lot of these people.
Sam
Episode 15, I chatted to a couple of researchers who are looking at creating a new type of capsule endoscopy. So Robert Kerrison and Gerard Cummings, and we had some audio sent in from other members of their research team as well, so they’re looking at something called Samplecam, which is a capsule endoscopy that can take samples of the bowel. So a capsule endoscopy is a little camera that you swallow and it takes pictures as it moves through your digestive system. And then you poop it out, basically. And normally it just takes pictures, but what they’re looking at is a capsule that will be able to take samples. So we talked about how this technology would be different, what impacts that could have on the patient experience of having this procedure. How this could be used in primary care settings and why they’re looking at people with Lynch syndrome as a first port of call for this technology. And we talked as well about how they’ve been getting people patients involved in this research.
Sam
Samplecam. So tell us about Samplecam and what does it do that’s different from a traditional capsule.
Gerard
OK, so Samplecam is using, is basically trying to see if we can use the same technology as capsule endoscopy, but instead of imaging the bowel we’re keen to explore whether we can do imaging and sampling at the same time. So the imaging is done by our colleague in King’s College London, Heba. She’s using artificial intelligence with image connected from the clinical trial that her colleague Elaine is doing. And what I’m working on in the University of Birmingham is the sampling aspect. So we’re trying to see if we can use these capsules to sample the contents that well, the lining of our gut really. Because there’s a lot of information that can be gathered from the lining of the gut, so the mucus layer effectively, and that includes everything from, there might be changes in the microbiome that might be associated with an early warning of colorectal cancer. We don’t know, but this tool could potentially open up the possibilities of investigating that there could be with the mechanism we use for sampling, we might even be able to capture precancerous cells from the lining of the gut. Again, if we’re able to detect those in the sample that we acquire that could be an early form of detection. So this technology is being developed really to really try and push the boundaries of how early can you detect colorectal cancer.
Sam
Next up, I talked to another patient, so I chatted to Diane Kelsey and we talked all about microscopic colitis. So microscopic colitis, again, we’re trying to draw attention to something that you might not be too familiar with. So it’s different to ulcerative colitis. There’s two different types of microscopic colitis. And Diane was very knowledgeable about her particular type and she talks about how it affects her diet and her lifestyle. She talked about when she was first diagnosed and what her symptoms were and how she manages it. So it’s a great introduction to microscopic colitis, both on a sort of general knowledge and personal level.
Diane
So microscopic colitis, I think it’s a bit like an umbrella. And then underneath the umbrella are two different types. So there’s the collagenous colitis. That’s the one that I have. And there’s the lymphatic colitis. So my collagenous. Just underneath the lining of the colon is, everybody’s got a layer of collagen and they’re like, it’s protein, it’s protein building blocks. But unfortunately with the collagenous, the collagen has become thickened. And so it makes it difficult for any liquids to be absorbed by the body. And so that means it leaves even more watery waste actually in the colon which has got to be excreted via the rectum so.
Sam
That makes sense.
Diane
That’s, you know, the chronic watery diarrhoea. And that happens when it becomes inflamed, but also with the collagenous, you have more white blood cells. As well. So that’s another way that they can tell. Now the lymphatic colitis, it’s they have a lot more white blood cells and there’s no thickening of the lining.
Sam
Next, I talked to Emilio Lozano and this was a the first of a two-part series. So I talked to Emilio about a tool called LumenEye which has been created by the MedTech company SurgEase and this is used to perform what you might call a mini colonoscopy and it could be used in various scenarios. And Emilio in particular talked about the different types of endoscopies, including the flexible sigmoidoscopies, colonoscopies, and how different procedures are used for different patients. So if you’re looking for a kind of a behind the curtain insight into a different tools that are used to perform examinations, then this is a good one to listen to.
Emilio
We currently basically use LumenEye in many, many settings. Essentially, we started an outpatient clinic using the LumenEye to check response to chemoradiotherapy and rectal cancer, for example. Where this patient had a colonoscopy initially, a diagnosis of a rectal cancer. And they had neoadjuvant chemoradiotherapy, which is the initial treatment. For most advanced rectal cancers to make the cancer shrink before surgery. And these patients are followed up after treatment. And there’s no need in these patients to use a very long instrument to check on a lesion that’s known to be in about 10 or less centimetres from the anal verge. So in those cases, like free, the endoscopy department pressures on having a look at this, we can check with LumenEye, document the findings. And check for the clinical response to this therapy, to chemo radiotherapy.
Sam
And then we did part two. I did part two with Dr Ammara Hughes. And again, this was on LumenEye. And Ammara is a GP partner at Bloomsbury surgery in in central London. And she explained how it’s used specifically in GP practices to diagnose things like haemorrhoids and anal fissures. We thought about the benefits of it. So for example, cutting down waiting list times and how all of all of that works. So again, a good insight into the healthcare system and how new innovations can help with issues such as waiting list times and also benefit patients, of course, on the way.
Ammara
And what LumenEye does is it allows us to bring this skill back into the community. And what’s advantageous about this particular device, not only can we look inside the rectum as we have been doing for years in general practice, but it allows us to take pictures. So for example, if you have people who aren’t used to looking in the bowel. For example, we’re not colorectal surgeons, but I might have my nurses, my nursing assistants. All sorts of allied health professionals using this, we can save images and if we’re not sure what we’re looking at or if we feel we have a second opinion, we can pass that on to one of our colleagues in secondary care who may not be sitting in our room with us, but who can have a direct view live of that image and advise us as to whether we need to refer that person on whether there’s anything worrying or whether we can safely manage it in the community.
Sam
And then in episode 19, I chatted to Helen West, who’s become a good friend of mine. She’s another charity bod. She works at Guts UK on their PPI, and we talked about a joint project that we’re doing into diverticular disease. So we’re doing a priority setting partnership together, and this is a James Linde alliance priority setting partnership and what that means is that basically we’re asking people, and that’s patients, carers, healthcare professionals, we’re asking people who have diverticular disease, look after somebody with diverticular disease or work in that field. What do you want to know about diverticular disease, diverticulitis and all sort of associated conditions so that we can later come up with a list of top ten priorities for researchers. So researchers can look at this list later that that will have put together from input from hundreds of people. And they will see, oh, okay, this piece of research was done to say that these are the top 10 things that patients, carers and clinicians care about. And therefore this is what should be researched. So we’re laying the foundations for future research into the things that really matter to people. So me and Helen had a good chat about that and explained all of it, and you can listen back to that.
Sam
It’s a long project, isn’t it? It’s gonna be about 12 to 18 months. Yeah, depending, depending how quickly we can sort of get it all together, but there’s very specific steps that we need to follow in order to get there.
Helen
Yeah, absolutely. And. As you know, Sam, I talk about this a lot, a lot probably to the point where you probably just want to shout at me now. But I do talk about the fact that this process is completely transparent and I’ve already said it and I’m going to say it again and I’ll probably end up saying it again because it is really vital that everybody knows that. And it is a transparent process and at no point is there, all the availability and all the information that goes into this PSP is available at the, as I said, at the end of it.
Sam
Again, drawing attention to the way that two different things kind of intersect with each other in this kind of Venn diagram, if you like, in episode 20, I spoke to Tonia Hickman and Daniel Peckham on cystic fibrosis and bowel conditions. So Tonia has cystic fibrosis. And she had part of her small bowel removed and some lymph nodes as well due to fibromatosis. And Daniel Peckham, Professor Daniel Peckham is a professor of respiratory medicine at the University of Leeds with interest in the gut microbiome and cancer as well, and we created this episode in collaboration with Cystic Fibrosis Trust. So thank you very much to them. More charity friends. And Tonia talked to us about her experiences of being in the hospital with having this operation on her bowel. And the difficulties of having cystic fibrosis care at one hospital and this bowel operation at another hospital and the need for seamless communication between departments. So that people get the care that’s right for them when dealing with both of these conditions because something that you do for one condition may have a negative effect on the other condition, and so is it all really important things to think about. So we talked about all of that. And Daniel gave us some really good insight into cystic fibrosis and bowel conditions as well. So a really good collaboration.
Tonia
So that’s when my bowel then became more problematic than my lungs and fast forward to when I’m much older. So 2020 just prior to that, I had a lot of bloatedness couldn’t eat foods without feeling quite full, feeling quite sick. And unfortunately, COVID interfered with all the plans that were meant to be happening to sort of investigate what was going on and eventually I had a scan which showed that I had a fibromatosis, but then we didn’t know this at the time. We just sort of saw a mass. And it was. It was then that I got quite nervous because I thought ohh this could potentially be cancer, even though they didn’t say it, there were. There were signs that were suggestive of it. So yeah. So I had some other tests and took me to the point of where I had this bowel operation.
Sam
And for listeners fibromatosis, that is a that’s a benign growth is that right?
Tonia,
Right, benign growth or soft tissue tumours.
Sam
Right.
Tonia
So yes, it was benign, which the doctors were very surprised at because they were convinced it was not going to be benign.
Sam
Was the fibromatosis, is that directly related to CF or what, is it just kind of a bad luck of the draw sort of thing?
Tonia
So I asked the question if it was related to CF. They said they could not specifically say it was and I asked what was the cause for it and they said the cause is unclear because there is no clear reason of why somebody would have one.
Sam
You just had me for the next episode. I was talking about my time at the Oncology Professional Care conference because I took part in a couple of presentations there with Lynch Syndrome National Lead Nurse Laura Monje-Garcia. So me and Laura talked about PPI. Patient and public involvement, how we do it at Bowel Research UK, how Laura does it and I debunked nine common PPI misconceptions. And then we also did a second presentation where I and other patients shared our patient experiences of navigating the healthcare system with a genetic predisposition to cancer. So I took both of those talks and kind of redid them for you as a bit of a revisit episode to make it available for people who weren’t at the conference, and it was a really great, really great conference. Very, very interesting. Lots of interesting talks and yeah, a pleasure to be part of it all. Really well organised and such great speakers to be joined by as well. So it was really good.
Sam
And so I’ve had three different types of cancer, and I’ve had surgery for those. And so I’ve had a lot of illness experiences, hospital experiences, and I’m also a writer. So in 2021, I wrote my memoir about everything that happened to me, and as a thank you to all of the consultants who had helped me over the years, I wanted to share my memoir. So I had sent all of them a copy of my book, including my consultant, who had been my consultant at the time for maybe 10 years. And so I sent him the book. We had an appointment a few months later and talk turned to my book and he’d already sent me a nice letter about it. And, you know, he said thanks very much for sending it to me. I really enjoyed it. And then he said something that really surprised me. He said I learned a lot from your book. And that really surprised me because bearing in mind I didn’t know anything about PPI at the time, that was really shocking because I thought, as if I, a mere patient, could possibly have anything to teach a surgeon. So that was really, really surprising that I could possibly teach a surgeon anything about my experiences. And that was the first time that I realised the importance of the patient voice in clinical care and in research.
Sam
In episode 22, we did another two-part series. So we did this first part on spread of bowel cancer to the peritoneum. So I spoke to doctor Meera Patel, who is doing research into the spread of bowel cancer to the peritoneum. And the first thing that she did was very helpfully explained what the peritoneum was, because I think that that’s not very commonly known body part. So we talked about how the peritoneum is kind of like a lining that protects the organs and can generate an immune response as well. So it has, it has its uses and we talked about how cancer can spread there and how it’s treated. And Meera talked about her research into this and how that’s also related to the gut microbiome. So another shout out there to the gut microbiome.
Sam
The first question that people are gonna have is what is the peritoneum and what does it do? So please fill us in.
Meera
OK, so I like to think of the peritoneum as a lining. So it’s a thin continuous, it’s almost like a cling film-like lining that lines, the abdominal and pelvic spaces and it covers most of the organs as well. It’s function primarily is to support, protect the internal organs like the abdomen and pelvis. We refer to it as a variety of physiological barriers that response to inflammation, infection and trauma. So, for example, in appendicitis, the peritoneum would generate an immune response. So as well as being a physical barrier to bugs, the peritoneum can respond to bacteria and start an immune response so it can produce immune signalling proteins to fight infection. It also produces a fluid, so it’s called, this is called peritoneal fluid and that circulates around the abdominal and pelvic spaces.
Sam
And then in the next episode, so that was part two of this two-part series. And I think this is probably the most emotional episode that we’ve done. This was an episode that I did with Becky Maskill and Rebecca or Bex Halstead. So Becky has personal experience of peritoneal metastases, so spread of cancer to the peritoneum and Bex is lead colorectal and peritoneal tumour clinical nurse specialist at the Christie NHS Foundation Trust. So Becky told us her patient story and Bex told us all about what her role involves, and the two know each other very well, so it was really wonderful to see their relationship. It really comes through, I think, in the episode. And Becky has such a great story and it was quite uplifting really and hopeful. And she had she had a lot of hope and positivity. And again such a great relationship between Becky and Bex. I really encourage you to listen to that one and you’ll have evidence of me, my professional hosting mask slightly slipping towards the end as they were. They had a bit of an emotional chat with each other and mutual share of appreciation for each other, which was just amazing to see. So yes, it was the point where we all got quite emotional.
Sam
The two of you have quite a long existing relationship and a good with rapport with each other. Did you want to say anything about what your relationship is and how you’ve met and how all of that has come about?
Becky
It’s been nearly ten years when we had our first chat. So it was because I got referred to the Christie to have an operation and Bex was the first person I spoke to. I believe it was. It will be coming up for ten years in October that we had our first chat and obviously Bex know so much about the peritoneum, cancer, bowel cancer. So as soon as I spoke to her. You just sort of clicked straight away and I just felt like she just could answer any question I had and I think it really helps having Bex every time I I’m in contact with the Christie, it’s always Bex I speak to. So you don’t have to go through all that story of explaining your past. It’s just so consistent and Bex is just. Just knows so much and you’re just amazing, Bex.
Bex
And then it gets like my head’s getting bigger, but it’s just it. It’s heartwarming that you actually feel that way and that, you know, I can make a difference to you by just being there.
Sam
Finally, in episode 24, so the last episode that you all have listened to, if you’ve been listening along was a roundup of last year’s Big Bowel Events, just one of the sessions from the Big Bowel event. So the Big Bowel event is our patient-facing event every year. It’s held virtually. It’s held this year in collaboration with the Royal Society of Medicine, and I explained in the episode all about that. So that will have passed now. In the last episode I explained about 2023’s event where we had a session from the PaRT network and that was three people from the network talking about their experiences in illness and their experiences in getting involved in research, so I’ve repurposed that for you so you can have a listen to it and hopefully I will also be able to get this year’s event to people as well to have a little listen. And you can also watch the whole of 2023’s event on YouTube and there’s a link to that in the show notes for the last episode too.
Nigel
There are many advantages to getting involved with PPI for. For other patients you’re helping by developing more effective procedures and treatments. For the NHS you’re providing, you can be providing innovation, maybe improved knowledge in how to treat their patients and ultimately that can save money. By reducing abortive treatments. But for yourself that there’s the chance to converse openly with others, be they fellow patients or healthcare professionals, and a real chance to gain a better of under better understanding of your conditions. So I hope you will sign up to be part of the of the network and my final thought is those who use PPI from the other side, from the commercial side, from the research side, please try and be clear what you want to get out of the process before you get us involved. And if you’re unsure then speak to BRUK in the first instance and see how they or their members can help you out.
Sam
So that’s it. That rounds up all of our episodes for this season. I’ve really enjoyed bringing this podcast to you. I hope that you’ve enjoyed it as well. If you have any questions or comments or anything you can reach out to me. If you e-mail part@bowelresearchuk.org, you can drop me an e-mail and you can follow us on socials as well to keep up to date with the podcast and anything else that we’re doing. And the Big Bowel Events and all of our research. Please consider donating to the charity because that’s how we fund research and that is how we will end bowel cancer and bowel disease. So thank you so much for coming on this journey with me so far and I hope to be in touch very soon. And also joined the PaRT network if you haven’t already, and details for that can be found on our website. So that’s all for now. I’ll see you really soon.
Thank you for listening to Can I Butt In. This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit BowelResearchUK.org where you can join our People and Research Together network or PaRT; read about our research campaigns and fundraising; or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.