Bowel cancer, LARS syndrome and stoma with Amanda Strother

Chantal Boyle:

Okay. So, joining me today is Amanda Strother. I'm really happy and excited to be speaking to Amanda today. How are you doing, Amanda?

Amanda Strother:

I'm good, thank you.

Chantal Boyle:

Can you tell me a bit about yourself?

Amanda Strother:

Yeah. So, I'm Amanda. I'm 34. I live in Fareham and I live with my partner Damian and my three dogs. I own my own business. I'm a hairdresser. And I have an invisible disability.

Chantal Boyle:

Can you tell us about that and how long you've had that for?

Amanda Strother:

I got diagnosed with bowel cancer at 31 in 2019, and since the cancer operation, I have a syndrome called LARS, L-A-R and then Syndrome. And it's basically the most awful thing I've ever experienced in my life. Going to the toilet 30, 40 times a day. Incontinence, so walking around [inaudible 00:01:12] and having to run to some toilets and leaving your underwear in the bag. And yeah, it's hard. It's really hard. I would not eat all day until about six, seven o'clock at night, so that I had less chance of having an accident when I was out. I'm self-employed. So, my work has been next to none for the last two and a half years. Pain. Just yeah, not fun, actually. And I said to my consultant that the cancer was the easy part. It's the post-cancer resulting in the last LAR Syndrome that was really difficult. So, we tried a lot of tests and things like that. And now I have a colostomy bag, so I have a stoma and she's called Hope and she was born or made on the 10th of August. So, I also have that as well.

Chantal Boyle:

LARS. Is that a common occurrence that can happen after people have an operation such as yours for bowel cancer?

Amanda Strother:

It's only recently been recognized as a problem. I suppose, luckily or unlucky, how you look at it, even five, 10 years ago when they were doing the operation that I had, which is an ultra low resection, where they take a portion of your bowel and some of your rectum away, and then join the two back up again, and I was luckily in terms of, I came from the operation and I didn't have a temporary bag, which I thought at the time was brilliant, but hindsight. And I think probably five, 10 years ago, the chances of you coming through that operation without needing a bag permanently were quite slim. Whereas now obviously technology's moved along. When I walked into theater on the day of the operation, obviously I was in a bit of a state. I've never had an operation before. And it had all gone very quickly and the anesthetist was trying to calm me down and stuff. And he was like, "Oh, look, there's the robot that's going to do your operation." I was like, "Oh my God, it's got eight arms. I don't want to see that."

Chantal Boyle:

Wow.

Amanda Strother:

I think-

Chantal Boyle:

It was a robotics.

Amanda Strother:

Yes, it's done robotically. So, they tend to do that kind of thing now because they can be more precise, meaning that you can have less chance of having to have a temporary bag, which for someone of my age, they try to do as much as they can. They say up to, I think it's two thirds of bowel cancer patients, depending on how low your resection is, can develop minor or major LARS. It's very difficult because each person's symptoms can be slightly different, but they tend to ask you and scale you on these points questionnaires, depending on how severe your symptoms are. And unfortunately mine was major LARS and if it's not improved in about a year, 18 months, then the chances are it's probably not going to get much better.

            I moved hospitals from the original one to a new one who had more of a knowledge of LARS. And we tried a lot of tests and a lot of painful procedures to see if we could sort it out without needing a bag. But yeah, the result was having Hope, which I can't say that I'm not happy with that because it's the best decision I think I've ever made in my life. And probably, although scary, one of the easiest decisions to make, because I was just done.

Chantal Boyle:

You're listening to The Sunflower Conversations with Chantal. To share your story and find out more information, details are in the show notes.

            Receiving a diagnosis of cancer at such a young age, all your choices are taken away from you, I would imagine, when you hear that.

Amanda Strother:

I felt like I knew, and I'd joked with the other half about it before I went for my first camera sigmoidoscopy and said, "It wouldn't surprise me." Because my dad died of cancer when I was 15. And then my mum got breast cancer. And then, obviously, me with cancer. And I had the sigmoidoscopy on the 17th or 18th of June 2019. And by the evening of the 18th of July, it was gone. And then it's not until afterwards when, in my case, I was left with a bunch of symptoms that were never explained to me. It was never told that this could be a possibility. I didn't know anything about it. I didn't have anyone that I knew of my age that had bowel cancer. It's quite a lonely situation to be in when you are diagnosed with a cancer that's traditionally an old person's cancer, let alone all of the feelings that just a cancer diagnosis brings to someone anyway.

Chantal Boyle:

So, you said that you felt like you knew that there was potentially cancer. You had been experiencing a lot of pain in the run up to that? How long had that gone on?

Amanda Strother:

I have anxiety as well, and I've always had IBS or what the doctors have said is IBS. So, about six months before I actually went to the GP, I was having diarrhea all the time. And it didn't matter whether I ate fish and chips or salad. Quite a lot of pain. So, yeah, about six months later, I ended up going to the doctors. And luckily he was just amazing because I know of a lot of young people that get fobbed off with the whole IBS thing. And he was like, "Yeah, you know what? I don't think it sounds like IBS. Maybe it's colitis or you've got some inflammation, but we'll be on the safe side and you'll send you for some tests." And that doctor literally saved my life.

Chantal Boyle:

That is wonderful because it really is all on the doctor, isn't it, that you get to see?

Amanda Strother:

At the sigmoidoscopy, the guy who was doing it? Oh. I don't know if you've had one of those or anyone has had a sigmoidoscopy, but they're not nice. And for a sigmoidoscopy, they don't give you sedation. So, luckily you're fully compos mentis. They give you some gas and air, which really doesn't work.

Chantal Boyle:

I was going to say, gas and air? I can't imagine that would even touch the sides.

Amanda Strother:

No, it's not. And so they were taking biopsies and I heard him say to the nurse, "Okay, I'm going to take some biopsies." And I just turned my head and said to him, "It's cancer, isn't it?" And he was like, "Well, you've asked me quite openly. So, I'm going to answer you openly and say, yes, I think it is." And that was at the first thing. And these guys, they do it day in, day out and they can just see by the look of things and stuff like that. Yeah. So, that was weird because you didn't have this weight. It was just there and then. And then you are laid there for the rest of the time where they're taking chunks out of your body thinking, "Oh, wow. Okay. I've got cancer."

Chantal Boyle:

Presumably you mentioned that you do experience anxiety. Did your anxiety then spike?

Amanda Strother:

My anxiety is based mainly around health things, I think from losing my dad when I was younger. So, hospitals, anything to do with health. Weirdly, in a roundabout way, it's probably been really good for my anxiety because it didn't have a choice. I had to just face it head on, to the point that now I feel like hospital's my second home. The first thing I said when I woke up from my original operation was, "Do I have a bag?" And when the recovery nurse was like, "No," I literally just fell back to sleep again. I was so scared about having a bag, because it was thrown on me two days before the original operation, "By the way, you might wake up with a bag."

            And I was like, "Hang on a minute." Two and a half years later, I'm opting for the thing that I was most scared of. My stoma comes from my large bowel. Ostomates or people that have stomas, you can have an ileostomy, which comes from your small bowel, a colostomy that comes from your large bowel, or a urostomy, which forms part of your bladder. And it collects either urine or feces, depending on which one you have.

Chantal Boyle:

How has it changed your life? From not being able to go to the supermarket for fear of needing to go to the toilet, are you able to go to the supermarket now? Has that made a big difference?

Amanda Strother:

My first week after being in hospital for the week after I got Hope was the best week of my life. I'd come home. I wasn't in any pain, bar a little bit from the operation. I didn't need the toilet. I remember waking up from Hope's surgery and thinking, "Am I going to freak out when I see her?" Because I've done my research. I've looked into this. I know that we have tried everything, but I'm so worried that, although I know that this is the right decision, that...

            I mean, how do you prepare to see part of your body that's meant to be on the inside, outside, stuck to a whole in your stomach? Yeah. That was the only thing that worried me was when I see her, am I going to freak out? And hence why I called her Hope. The stoma nurses tell you to name your stoma so that you accept them a little bit more. For me, Hope has become this incredibly positive thing. And I haven't had those feelings of, "Oh my God, I hate this." But in terms of, can I do more now? The answer currently is no, but that's purely down to my exceptionally good luck. And I now have colitis in the unplumbed bit of my bowel.

Chantal Boyle:

Would that happen to other people who have a stoma to a colostomy bag?

Amanda Strother:

Yeah. So, it can do. And I would imagine it could happen to an ileostomy stoma as well, depending on how much is left. I think I probably was slightly had more chance of getting that because of the toilet situation before all of this. So, my bowels were used to being used at least 30 to 40 times a day, and then suddenly they're dry as a desert. So, it can be quite common. It doesn't necessarily. It can clear itself up as well.

Chantal Boyle:

You are listening to The Sunflower Conversations with Chantal. To share your story, details are in the show notes.

            Physically, how does it feel, and is it tender? And I mean, what's the mechanics of that like?

Amanda Strother:

So, I was quite lucky in terms of operation-wise. They managed to go in keyhole, whereas some stoma patients have to have open surgery. Sometimes people call them rosebuds, because they look a bit like a rose. My Hope is 25 millimeters round. So, she's well, not round, and she's bright red. She's completely numb. So, I can't feel her. You can also get bag covers that go over the top of your bag so that if you're slightly more conscious or you are out and about, I don't know, you want to wear a bikini or something, and you can get all different bag covers that have got whatever pattern on. You can even make them yourself. So, if you see an ostomate out and about in a swimming pool, don't be worried that their bag's going to come off and it's going to pollute the swimming pool, because it's not a possibility.

            I can bath with my bag on. I can swim. So, with me and Hope, we change three times a day. If you have an ileostomy, mine's a closed bag. So, I just take the whole bag off, put it into a nappy sack, throw it away. But if you have an ileostomy, you can drain it from the bottom of the bag. So, you just sit on the toilet like a normal person would, and you just empty your bag in it. So, therefore, some people might only change their whole bag maybe two or three, four times a week.

Chantal Boyle:

Thank you so much for wanting to share all of this with us and to get awareness out there for people to understand what it is and what it's like. And I think you really raised a couple of very important points, that if you see somebody at the swimming pool, don't give a funny look. Don't worry.

Amanda Strother:

That's the thing with the whole hidden disability thing and why I'm so interested and so passionate about it, is because I have, even before I had the bag and I ended up having to use disabled toilets, the problem that we've got is to be disabled, generally the societal view is that you need to be in a wheelchair or you need to have a physical that you can see. And I don't think, for example, the disabled icon with the person in the wheelchair is particularly helpful for people like myself or other people with hidden disabilities because we don't look like we're disabled. It's quite frustrating and it's quite disheartening and it can be quite scary when you are made to feel like you need to condone why you are using something.

Chantal Boyle:

With the hidden disability sunflower, do you feel that that helps bridge that nonverbal way of having to say, go into detail about what your health condition is?

Amanda Strother:

I'm really careful that when I put my keys in my bag, the sunflower, the lanyard, is hanging out of my bag. So, I don't necessarily wear it around my neck, but I do make it publicly seen. And then definitely when you are out and about, and you are using shops and things that people are a lot more trained in that kind of thing now.

Chantal Boyle:

I'm pleased to hear that the sunflower is helping you in those situations. And also quite rightly that you said if you don't feel comfortable wearing it around your neck, you don't have to.

Amanda Strother:

It's the knowledge of knowing that you've got it there and that if I have to make it more visible or I need to make it more visible because I'm asking for something in particular, that it's just right there. It makes me feel more secure and more confident. There's nothing worse than having to ask someone in a shop to use their toilet and having to produce a card and then explain. I'm generally asking you because I need to.

Chantal Boyle:

So, ultimately then, do you think that the sunflower is needed in society?

Amanda Strother:

Yeah, I do. And I think if we can make it bigger and more out there. I went into a coffee shop the other day, I won't name the name, and it was a disabled toilet and it would be impossible for me to change my bag in there without putting all of my supplies on the toilet. And when I emailed the company... Because things like that really annoy me. My life has not been easy and it's definitely not been as difficult as some, but to just use the toilet like a normal person does, it shouldn't be so difficult.

            Just a simple shelf somewhere. It doesn't even have to be very big. And a coat hook on the back of the door. Because not only is that going to mean that it's accessible for someone like myself, but for anybody. Even in mother and baby changing rooms where you've got the disabled, if you can put your bag up, you don't have to put it on the floor. Just something as simple as that can just mean that it's accessible to so many more people, not just stoma patients, but everybody else that has something that they need to lay out.

Chantal Boyle:

If you have no experience or knowledge of what stoma is and what it means, the journey that person's been on to get that stoma, then you're not able to put yourself in the shoes of others, are you?

Amanda Strother:

All we need to do is raise this awareness. And I'm open as I possibly can be because up until my diagnosis, I'd never come across a stoma bag and I probably would have definitely thought, "Oh, that's an old person's thing. It probably smells." Like, "Ooh, that's disgusting." And actually I can honestly say my stoma bag does not smell ever.

Chantal Boyle:

What are your hopes for the future?

Amanda Strother:

Just knowledge. We are very good at #bekind, but are we actually on a regular basis? Do we call people out? We don't have to be making people that are unaware or didn't think of something feel awkward. There's no need to do that. But if we can be more visible as a community and society can be more understanding and accept that actually just because someone's walking down the street doesn't mean they haven't got millions of other things wrong with them. And actually under that surface, under those clothes, someone could have a million things wrong with them and we're not going to know that. And I think just acceptance from other people that we are all different and that's totally okay. And actually that's what makes us such a brilliant race, being so different from each other.

Chantal Boyle:

I think you've summed that up really well there, Amanda. Understanding and acceptance and actually be kind. It really isn't a difficult thing to do. It's not a massive ask. I wish you all the best for your operation and all the best for Hope and you getting your business back off the ground and really being able to enjoy life in the way that I can see that you are absolutely chomping at the bit to do. And you mentioned Colostomy UK. That's a charity that you use to support yourself as well.

Amanda Strother:

Yeah. They're brilliant. Yeah. Really, really good.