Season Seven Episode Five: Anna Cooper Introduction

Narrator: This podcast is intended to support UK healthcare professionals with education. The information provided in this podcast is not a substitute for professional medical advice or treatment, and patients are encouraged to consult healthcare providers, including nurses, for any medical questions or concerns. Interview Hannah Paterson: Welcome to stoma and continence conversations from Coloplast Professional, where healthcare professionals and experts by experience discuss the latest hot topics in the worlds of stoma, continence care and specialist practice. I'm Hannah Patterson, I've worked in specialist care and I'm currently the Ostomy Care Associate Education Manager at Coloplast. This time I'm talking to another Coloplast Ambassador, Anna Cooper. Anna Cooper: We needed to help support people with these conditions because they're often played down as just, oh, they're just bad periods, but actually they're very real. I thank my lucky stars that I had an emergency appendectomy. Because if it wasn't for that general surgeon saying I could see endometriosis around your appendix, but I can't treat it You need to see a specialist. I would never have gone. Hannah Paterson: So Anna has two stomas, an ileostomy and a urostomy. Her ileostomy was formed in March 2020 and her urostomy was formed in June 2023, so this year, and this was a result of endometriosis. So hello Anna. Thank you for joining me. Anna Cooper: Hi, thanks for having me. Hannah Paterson: So, really interesting reason why you've had your stomas. Not something we hear about very often. So, can you tell me a little bit about your journey, please? First of all, where are you from? Whereabouts in the country are you speaking to me from? Anna Cooper: I'm from near Wrexham in North Wales. I've had a long history with endometriosis, so I suffer with stage four widespread endometriosis and I was diagnosed two weeks before I turned eighteen and I'm now thirty. It started with, so for anyone who doesn't know, endometriosis is a systematic inflammatory condition where cells similar to the lining of the womb are found elsewhere in the body and attach itself to organs. And if you can imagine like a tree. Where you can see the surface, but it roots in underneath the ground. That's what it does to your organ. So it grows on the top of the organ and then roots in, so mine when I was diagnosed, was already had attacked my bowel and my bladder, so I had to have a bowel resection and it's just been a spiral since then. I've had really active disease constantly grow and it's one of those conditions where some people have a minimal amount of disease, other people can have it really aggressively. There is no cure for it, very similar to Crohn's and Colitis, you don't, it's one of those conditions that it, you have to learn how to manage day to day. But I've had sixteen operations now, because of the disease, because it grows back aggressively every time. But the pain started when I was age eleven, because I had painful, heavy periods from the get go. And then it probably progressed when I was about thirteen, fourteen, to painful bowel movements, painful passing urine. I used to get cyclical rectal bleeding and like every month it would mimic like I had a UTI. Whereas I didn't, it was just the symptoms I was getting and obviously when I was finally diagnosed, before I turned eighteen, that was the reason why. So a lot of the symptoms with endometriosis overlap with other conditions. So I was misdiagnosed quite a lot with IBS. I actually, they thought I had an appendicitis and operated on me when it wasn't. It was endometriosis around my appendix. So there's a lot of misinformation. And a lot of lack of knowledge surrounding it with doctors, which probably played a huge part in my journey with it as well, with having to have so many surgeries continuously. Hannah Paterson: Yeah I mean, I don't know very much myself at all about endometriosis until speaking to you and obviously following you on social media now as I do. So what were those symptoms, I know you mentioned about rectal symptoms and heavy bleeds, were there any other symptoms I'm thinking because you mentioned similar to Crohn's and Colitis, is it an autoimmune based disorder? Anna Cooper: It’s not classed as autoimmune but it is something that's being looked at because the way it behaves is very similar to autoimmune conditions because it's basically like your body attacking itself. So, and it causes a lot of domino effects into other areas of your life. So a lot of things like B12 deficiencies, iron deficiencies, folic acid deficiencies, and also causes a lot of organ damage when it's left or not treated quickly enough. And then some people, it is very similar to Crohn's. Some people can manage it with medication and can manage it quite long term. Other people have to have invasive surgeries and end up, like myself, and have stomas because of the result of the condition. Because, for me, the reason I ended up with both of my stomas is because the damage of my organs was so severe, they shut down and stopped working the way it should have functioned. So the only other option was to do these two stomas. But the symptoms are really varied in person to person, so somebody may not suffer heavy with their periods, but may get really bad bowel symptoms, but doesn't necessarily mean that they're both endometriosis, if that makes sense. Hannah Paterson: Yeah, yeah. Anna Cooper: And like, for me, I had very painful periods from the get go, from starting at an early age, and then they were erratic. Which is normal in teenagers, especially preteens, is that periods take a couple of years to settle, regards to how regular they are. But the pain isn't normal, so that's one thing I would say, is if you know anyone suffering with the pain, we always say, when we work with the charity I co founded, and work with medical professionals, is we always say, A painful period that stops you in your tracks is not normal and I think that was where it went wrong for me as a teenager as I was constantly told you just need to man up, you just need to get over it. It's part of being a woman. You just need to deal with it. Hannah Paterson: Have some paracetamol and a hot water bottle sort of thing. Anna Cooper: My pain was normalised for so long and even though I count myself lucky that I was diagnosed at a relatively early age, because so many women go ten, fifteen, twenty years being misdiagnosed or not treated fairly. I still went from, you know, age thirteen to eighteen suffering in silence because doctors weren't listening to me and I, and I thank my lucky stars in a way that I had an emergency appendectomy because if it wasn't for that general surgeon saying I could see endometriosis around your appendix but I can't treat it, you need to see a specialist, I would never have gone. My dad thankfully had private health insurance so he took me privately to a surgeon in Birmingham. And he treated me. And I remember sitting in front of that consultant and saying, I can tell you now you've got endometriosis, but I don't think it's going to be severe, because otherwise the previous surgeon would have seen it. Because I had a, like an exploratory laparoscopy when I was sixteen, with a gynecologist who said there was nothing wrong with me, and that my pain was psychological. But I went in with this specialist and I came back out the surgery. And he was by my bedside and he said I'm really sorry but I need to take you back in in a couple of weeks because it's severe, it's all over your bowel and your bladder and I'm going to have to resect your bowel. And even though I was devastated that I obviously had to have more surgery, I felt validated for my pain and that I'd been heard and listened to and that actually, I wasn't going crazy and all the people that had told me and they were medical professionals, a lot of them that had told me and dismissed my pain, that it was real and that actually what I was going through was something very real and I had never heard of the condition endometriosis. Before, and even my mum being a nurse, she'd heard of it but never really understood it, just assumed it was something related to your periods. And I would never have guessed when I was diagnosed that I would have ended up here, twelve years on, with all the surgeries I've had to endure and I had a full hysterectomy when I was twenty eight, and obviously living with a urostomy and an ileostomy. And that's why me and my friend Gab started our charity, Menstrual Health Project, because we needed to help support people with these conditions, because they're often played down as just, oh they're just bad periods, but actually they're very real. They cause a huge amount of damage when diseases like endometriosis are left. It's just historically, we've not spoken about periods. We've not normalised the conversation about being open and honest about our menstrual health and that's why I advocated online for so long because for me, I was constantly told not to talk about it or constantly told that it was normal what I was experiencing when it was the complete opposite. And I think we need to stop normalising women's pain because there is a horrible statistic currently that it takes an average of ten times for a woman to visit a GP before they're taken seriously. For a Man it’s a average of one there is, unfortunately, there is a big gender health gap and gynecology is the bottom of the pile and I think this is where we're trying to do work with gynecology. It's seen as not something very serious. When that is complete nonsense, it needs to be taken more seriously. Hannah Paterson: And I do think it's anything that involves intimate areas in any description, so gynecology, bowel, things like that, they're almost the taboo subjects and people don't want to talk about them. Obviously, we talk a lot about the bowel side of things with stomas and things like that, but you are one hundred percent right that it's across the board with anything intimate healthcare wise. And because it's not visible, if somebody's got their arm in a sling or their leg in plaster, you notice that it's a visible symbol to things, but when things are going wrong inside, and especially in areas like that, it's not spoken about people do hide away. I always refer to it with. Stomas it's the poo taboo. We'll have to think of a gynecology based, pun in that respect now. Anna Cooper: That's the thing with conditions like endometriosis, they overlap into so many other areas of your body. And I think what a lot of people don't realise, and it's not through any fault of their own, it's just there's no education surrounding it and no awareness. I think that's why we work so hard with our charity is to change that narrative about surrounding about talking about all areas of your health, you know even if you've got conditions like Crohn's disease and crisis, there's nothing to be shamed about talking about your bowels or your bladder I think it's so important because we've been told never to talk about it, never to speak about it because it's shameful. And I think for us with endometriosis, I think it's dismissed so much because it's seen as just a reproductive problem and that it's not anywhere else in the body and I think that's where people don't realise is this condition can travel to the lungs like, we've spoken to people who have had collapsed lungs because of endometriosis growing on their lungs and it can go to bowel, diaphragm, bladder And it, it can spread, like, it's not a condition that just stays in the womb, just stays causing problems with your period. It's so much more than that, and I think that's why with government and our healthcare system, it needs to see these conditions as whole body conditions, not just reproductive conditions. Hannah Paterson: I often feel the same with, IBD, because IBD is my area, I suffer from, I was told for years, similar to yourself, I was psychological, then I got diagnosed with Ulcerative Colitis, and I've recently been rediagnosed as Crohn's. And again, people think those sort of illnesses just affect, the bowels, but it doesn't, it affects so much more. It almost starts in that area, but actually it's like a wildfire almost that it goes beyond that. Coloplast Professional offers a lot of educational material for specialist nurses and healthcare professionals. Visit coloplastprofessional.co.uk to find out more. I know you were saying about medication. So what sort of medication do you take? Is it similar to what people with immune disorder take? Is it designed to sort of suppress things or. Anna Cooper: Yeah, so it's designed to suppress the hormones that feed the endometriosis, the growth. So a lot of these medications are very trial and error, very similar to Crohn's and Colitis, where not one size fits all. A lot of the medication never worked for myself and so many other women. I think they'll put you on the pill, back to back, they'll put you on the Mirena coil as well as the pill sometimes. They'll put you on the injection. And I think the worst out of them all is they'll put you on chemical menopause injections such as Prostaps, Olivex, or there's now a new medication in the UK called Ryquo, which is an oral form of putting you through chemical menopause. And these drugs are hard drugs. They're used in breast cancer patients. They're used in prostate cancer patients. So they don't come without their side effects. And I think I went through chemical menopause from my early twenties. And you're kind of thrust into it where your ovaries are shut down overnight. And you're having to deal with these symptoms that are horrific. You've got the bone aches, you've got the brain fog, sickness and headaches, and they're just really nasty, nasty medications and they're only licensed in the UK to use for twelve months with HRT, but on discretion they can be used for longer periods of time, but there's I think the issue with, and I'm sure it's the same with Crohn's and Colitis, but the issue is with endometriosis is unless you're with the right specialist, they'll give you these drugs, not really thinking of the long term effect, and they'll give it to you to kind of just try it. But leave you then on it for long periods of time with no support. And I think that's really dangerous when it comes to any medication, is that you need to monitor a patient while you're on them. Because, like for me, I did four rounds, totaling over four years of chemical menopause before I had my hysterectomy. On the third round I had, I suffered severely mentally. I had really bad anxiety, depression, it was just, it was not a nice place to be and I remember constantly arguing with my husband and wondering how, and I still to this day say to him, I really don't know how you managed to get through that time with me because I was either overly emotional or, really angry for no reason. And that was the effect of the medication had because it's not just that impact. Like, with our hormones, our hormones create so much, but also protect so much. So they protect our heart health, our brain health, our bone health, and when you're messing with those hormones, it can cause everything to just panic. And I think people aren't aware that conditions like endometriosis are not easy conditions to manage because we don't have a cure, we don't have one stop answer for it. If these medications don't work, it ends up being in excision surgeries where they cut away the disease. And that doesn't come without its problems either because you end up with scar tissue or damage to the organs because it's grown so deep that you have to resect parts of the organ or end up with stomas like myself. There is no good option when it comes to endometriosis. I think every option has, I always say it's a bit like choosing between two evils, which one you want to go towards, and I learned that pretty quickly through the years of suffering, but you do get patients with endometriosis who can manage it on medication, whereas there's others on the other side of the spectrum who can't, and I think that's why I always say when I'm advocating is if somebody's newly diagnosed with endometriosis especially, I always say don't look at me and think you're going to end up like me because I don't want to ever scare anybody with what's happened to me. It's more about educating people to access the care as soon as possible and to advocate for themselves to be heard because I think early intervention is key with endometriosis in protecting the way your organs function. Hannah Paterson: Absolutely. I know obviously you've had ureliasomy since March 2020. How many resections had you had done prior to that? I know you spoke about the bowel resection quite early on in your diagnosis. How many did you then have before stoma became the option then. Anna Cooper: So I only had one resection before I ended up like that, but my resection was quite big that they had to do, because they had to do it in two separate parts. But I had my daughter in between and I was incredibly lucky, because with many people with endometriosis, they suffer with infertility. and I'd met my husband young, so we started trying for a baby when I was twenty and I had her at twenty two. So we were two weeks away from due to start IVF when I found out I was pregnant with her, so I was very, very lucky. But she was premature, so she's five weeks early, but the pregnancy caused a huge amount of pressure on my bowel because it didn't function very well anyway. And I will probably say Grace was nine months before I started suffering with bowel incontinence, and I had a sacral nerve stimulator put in to try and help. And it did help for a short period of time. And then again, it just stopped. And I got diagnosed with slow transit bowel disease, which they said was as a result of my resection and the endometriosis and the scar tissue because when they went back in after I'd had my daughter they'd seen the disease had grown back in my rectal vaginal area and my rectum was really bad and they said that it was like trying to coax two pieces of paper with glue stuck between them to try and, remove that and they said if we remove it and, and it's either going to end up hole in one side or the other and it would cause a lot of problems. So we went a few years with suffering with, bowel incontinence, and then it would go the other way to the point I could never go to the toilet, so I would have to do colonic irrigation, so I'd have the clathora system, or I would use microlactam enemas and phosphate enemas every day, and I'd have laxative tablets, and it was just constant trying to just manage between the two and then when they did my slow transit function it stops the end of my small bowel. So they said my large bowel there was just no movement. There was nothing So I was being hospitalised every few weeks because I was so ill and the bloating was awful so I ended up having my first ileostomy in March 2020, which was meant to be like the start of a new chapter almost. Hannah Paterson: But we know what else started in March 2020 don't we? We know what else that came along at that point. Anna Cooper: It did and then unfortunately as well what happened is my surgeon who's been my surgeon for a long time, my colorectal general surgeon, had to have surgery so he couldn't operate on me so because we couldn't wait. One of his colleagues took over and he basically changed the surgical plan and the plan my original surgeon said was to remove my large bowel and do an end ileostomy. Whereas the new surgeon said, no, no, we don't need to remove your large bowel, we'll do a loop. So then that's what happened. I was naive, I didn't know much about anything and just went with it. And then obviously COVID hit, so it was a really difficult time because I was in hospital as the country went into lockdown. So I was rushed out almost. I was like pushed out, so I was only shown how to change my stoma bag once before I left the hospital. And I remember coming home and couldn't look down at my stomach, I was just not ready and not prepared. And my husband bless him YouTubed how to change a stoma bag, that’s how he helped support me. And that's what he did. It was really difficult, and I would say probably for the first six months it functioned, it was okay. But it wasn't without its issues. I had really high output, so I would be changing my bag nine to ten times a day. I was on loperamide, I think it was four times a day at one point, it was that bad, and codeine, trying to thicken it, and it just wouldn't. But what they'd made a very tiny stoma, so it was fourteen millimeters in circumference, and it was flushed completely to my tummy, and then after six months it completely sunk under, so I had like a divot in my stomach where it had gone under, and we tried everything. And coloplast were great, bless them. Trying to help me sort it. Just trying any product that would try and help. You know, like the belts, and the deep convicts, and the seals, and I tried everything. The flanges to stop me leaking, and nothing worked. And then it started where I couldn't keep food down. I was being sick all the time. And my stoma wasn't functioning as well. So I went into hospital and they did an x ray and they could see that what was left, so what they'd left my large bowel was all compacted. And it was bypassing my loop. So whatever was in there was kept bypassing. So not everything was coming into my bag. That's why it slowed down so quickly. And I was back to my original surgeon and he said, Anna, we need to take your large bowel out because it'll end up perforating because it's just, it's too risky. So in May 21, I had like a revision, but I also had my large bowel completely removed. And they left a bit of my rectum, so they call it, I think it's a rectal thump, they call it, because they resected quite a bit of my rectum previously because of endometriosis. But what they didn't want to do is remove it completely because of my pelvic floor situation, because I had nothing to help hold everything up. So they said if I had my rectum removed, it would just, everything would go to pot. So we made that decision, kept that in, had my large bowel removed, and had my ileostomy made into an end, and had it redone, and it was polar opposite my dermatitis. It was thirty milimetres in circumference. It had a really good spout on it, functioned well. Yes, I had high output for the first six months, but it made such a difference. But the biggest difference, is I didn't have any of the pain, whereas the whole time with my first one, I was in agony all of the time and it was just getting worse and worse and worse. I was in hospital every few weeks, whereas my end was life changing to me because I never went back into hospital with it. I've never had any issues with my spout. That's what it should have been initially, and I think that's what I found hard because I had such a drastic surgery Because I had no choice and people were like oh, so you're feeling better now, and I was like no I've got all these problems with it whereas when I had my second one it was much better, and it did give me my quality of life back and my control, if you will on my body. I think what was happening in the meantime is I lived with an indwelling catheter. So I lived with an indwelling catheter for about four years, on and off, because my bladder was failing. But because all the issues with my bowel was happening, they prioritised my bowel over my bladder. So they left, the urologist left me with my bladder the way it was. And for anybody who knows about catheters. You shouldn't really live with an indwelling catheter for that long because they're not for people who are mobile and meant to have some quality of life and I think I found it harder with a catheter than I did with my stoma because my catheter was really bad and again, that is what happened with my bladder is because the endometriosis had infiltrated the bladder so much it destroyed the function of it, so the nerve endings and everything of the way your bladder would normally work. So I was in retention continuously, so that's why they put a catheter in. But the start of last year, I started to expel my catheters. So my body was just not happy. So it would expel it, push it out with the spasm. So all I can describe it as is contraction pain, like I was in labour continuously. It was horrific. It would push the catheter out with the 10ml balloon inflated. So it would tear all through my urethra. Hannah Paterson: I’m actually crossing my legs here. Anna Cooper: Yeah, it's horrific. And then I ended up with a urethral prolapse because that kept happening. And because I was in retention so much, because that would happen, but still in retention, they'd have to put an indwelling catheter straight back in. You can imagine how painful that is with a torn urethra and it was just awful. And that happened probably once a month. It wouldn't go any longer than four weeks with a catheter. So they tried me with a suprapubic catheter. thinking that it was the urethra that was the problem, but it wasn't. It was my bladder, my bladder was really angry, and it did the same with the suprapubic. And because, obviously, suprapubic is a bit more invasive, every time I kept doing it, they were like, we can't keep taking you back into theatre, because I'd had so many general anaesthetics before, and so they did it once and it expelled and they said no we've got to go back to indwelling catheter And you'll have to be referred for a urostomy So that's when that option came into play really I had to go back to the drawing board and think that I needed this drastic surgery which to me wasn't as daunting this time because I knew what a stoma was and had kind of learned to live with it. Hannah Paterson: Were you also able to take the positivity from your second stoma surgery, knowing the difference that had made, were you able to keep that positive mindset there to take, obviously not taking into account your first stoma surgery, but that second one where you said it was life changing, was that part of your driving force to compel you to go with that as well? Anna Cooper: Yeah, and I think because I had no other option, my hands were tied, so I couldn't live the way I was living with having the catheters expelling constantly, and in turn with that I then ended up in retention and back filling into the kidneys and I had no quality of life. It was horrific. It was so painful. I'd bleed continuously from my urethra. It was just awful, constant infections. So when the consultants referred me to the specialist. Because there's not many people who do urostomy, so I got referred to him and I sat down and I said, have I exhausted all my options? And he said, yeah, there is nothing else we have to do a urostomy to protect your kidneys. So that's what we did. And I think, unfortunately, the NHS waiting list was. It was awful. It was two to three years, even though that I was priority and the way I was living and I asked the question, I said, if I wait that long, what's the damage likely to be? And he said, you don't want to know the damage it could cause with your kidneys. So thankfully, again, I was in the position that me and my husband, we could pay me to go privately. Not that we should have done, but for me, I had to gain something back with my life because I've got a seven year old daughter and I had to be more present because I wasn't. That's when I went into surgery in June this year. A week after I turned thirty, I went into Urostomy surgery. Hannah Paterson: Happy Birthday! Anna Cooper: I know, and I was quite positive to be honest, because I was thinking, oh, this is going to give me what I need. And again, because of having my large bowel removed gave me so much quality of life back, I thought it'd do the same and it, it has, like, we're five months down the line now and it has, the surgery has worked and I have no pain anymore, regards to my bladder and my urethra because it's not there and it's not needed and it's direct to my kidney's neck because they use part of your small bowel and your ureters from your kidneys to create the stoma. And from that part functioning, that side is perfect, like it works and it's been great. But unfortunately after the surgery I developed sepsis from pyelofrenitis, which is a severe kidney infection. And I was incredibly poorly because I went into septic shock and I spent time in hospital on and off for about five weeks. So I was away from my daughter for a long time. And that has given my body a huge knock because it's damaged my right kidney. Which looks like it's not going to recover and then four months later, which is only a month ago I developed sepsis again from pyelofrenitis, but it spread to my liver and my bile duct this time So it caused deranged liver function and now again, a few weeks later, I'm on antibiotics for pyelophrenitis again and they don't know whether it's a result of the surgery because of the now pressure on the kidneys, because before that my kidneys were healthy. It was the bladder that was the problem. So there's a lot of teething issues now regards to it and I often think if I didn't have it would it be the case, but then I can't think like that because I didn't have an option. So it's a bit bittersweet at the moment. Hannah Paterson: Yeah, you're still finding your feet there at the moment, almost. Anna Cooper: Yeah, definitely. Hannah Paterson: I've got to say, despite everything which you've been through, which is, I mean, listening to your story it's almost like, it doesn't even sound real, but it almost like, well it can't possibly get any worse. Oh no, oh no, it has. But you are so, so bubbly and so positive. It absolutely. baffles me, you absolutely blow my mind, you really do Anna, it's not very often I'm stunned into silence but I actually feel that you've done that to me today. Anna Cooper: I don't know, I think it, for me, I think, this is why I co founded Menstrual Health Project with my friend Gabs, because we had to change the narrative, the way we look at certain conditions, especially invisible conditions because they're often dismissed and ignored. And for me personally, I have a seven year old daughter. I don't want her to grow up in a world where we don't talk about these things and don't normalise this conversation because we failed so many generations before us with not talking about our health in general, so people end up suffering in silence for so long and for me endometriosis and what's come with it is such a huge negative in my life. I've had to turn it into something positive and that's how I've done it through advocating online and meeting other people. Like working with coloplast, you meet all the different people that are all different backgrounds who suffer with certain conditions and it's amazing like getting to do that. Hannah Paterson: I always find when I meet up with you guys, I find it so empowering when I meet up with the ambassadors. It's like almost like a bunch of superheroes, like that's the way I, I like it. I think next time you all meet up, you should all be wearing capes. I think that should be the next thing, everyone wearing a cape. Anna Cooper: That's the next thing, I think we'll all wear capes, just in case. Hannah Paterson: The link for your charities is in the podcast description there as well, for anyone that wants to have a look at Anna's charities there, which I'll be looking at them myself. It's just, I say, Anna, you are, you are worthy of that cape, and then some. You are absolutely incredible. You've opened my eyes to endometriosis. Say I put my hands up and say, I always thought it was all moots about, like you said, painful periods. That's what they've always been told that they are oh yep. People with painful periods. And like you say, it's so, so much more than that. So thank you for opening my eyes, and obviously I wish you all the best and I hope that the pyelonephritis now stays at bay and that you get to start. going out and enjoying yourself again, but I'd say you are incredible, so thank you so much. And to everyone listening, we'll see you next time. Outro

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