Latest / Beyond the Pouch / E3: Mohammad's Battle with Colon Cancer & Raising Awareness for Ethnic Minority Groups

Transcript

E3: Mohammad's Battle with Colon Cancer & Raising Awareness for Ethnic Minority Groups · Beyond the Pouch

• 0:00
  SPEAKER_01: Hi guys, welcome to Beyond the Pouch, a podcast series brought to you by Pelican, Eakin, and Respond with your hosts Rachel and Louise.
• 0:08
  SPEAKER_01: Dive into the world of ostomy through open and honest conversations, including the lives of many inspirational ostomates that we're lucky enough to call our friends.
• 0:17
  SPEAKER_01: So you can get to know them beyond the pouch.
• 0:20
  SPEAKER_02: Welcome back for another episode of Beyond the Pouch.
• 0:23
  SPEAKER_02: If you haven't already listened to the previous two episodes, please head over to Spotify or YouTube and give them a listen or a watch.
• 0:31
  SPEAKER_02: This week we are very excited to be joined by another guest, Mohammed, who will be discussing his stoma story and his battle with cancer, along with the lack of representation of ethnic minorities.
• 0:44
  SPEAKER_02: So hi, Mo.
• 0:46
  SPEAKER_02: Hi Mo.
• 0:47
  SPEAKER_04: Thank you for having me.
• 0:48
  SPEAKER_01: You're very welcome.
• 0:49
  SPEAKER_01: And we haven't long met you in person, did we, at the get together?
• 0:52
  SPEAKER_01: No, yeah, yeah.
• 0:54
  SPEAKER_02: We did you jumped in the deep end there.
• 0:56
  SPEAKER_02: We just added something.
• 1:01
  SPEAKER_01: But luckily, you were lovely in real life.
• 1:03
  SPEAKER_04: I must have made a good impression.
• 1:05
  SPEAKER_04: Well, you here.
• 1:06
  SPEAKER_01: You made the cut.
• 1:09
  SPEAKER_02: It's just sat outside because she was you was very nervous, wasn't you?
• 1:13
  SPEAKER_02: And once we all started talking, you felt a lot more at ease.
• 1:18
  SPEAKER_04: Definitely.
• 1:18
  SPEAKER_04: I I've never done anything like it before.
• 1:21
  SPEAKER_04: So yeah, jumping in the deep end.
• 1:24
  SPEAKER_01: How did it feel going on your way back home after being around Ostermatt and spending that time?
• 1:30
  SPEAKER_04: I was quite giddy all the way down to Hertfordshire.
• 1:33
  SPEAKER_04: I thought it was amazing just to see so many people who have the same struggles that I do, and to have a conversation representing my stoma as a normal way of life.
• 1:47
  SPEAKER_04: So it's great.
• 1:49
  SPEAKER_02: And how did you feel like with regards to like meeting everybody?
• 1:53
  SPEAKER_02: Because sometimes it can be quite daunting.
• 1:56
  SPEAKER_04: Yeah, I mean I'm autistic, so being in large groups, I tend to shut down.
• 2:03
  SPEAKER_04: But nonetheless, I thought it was important, far more important, to be there.
• 2:09
  SPEAKER_04: You smashed it.
• 2:10
  SPEAKER_00: You wouldn't have thought it was your first event.
• 2:12
  SPEAKER_00: You smashed it, yeah.
• 2:14
  SPEAKER_02: Thank you.
• 2:16
  SPEAKER_02: As always, it's quite daunting, isn't it?
• 2:18
  SPEAKER_02: I mean from talking to you and reading through your journey and going back through your Instagram posts, is it correct that you were misdiagnosed by three doctors prior to your cancer diagnosis?
• 2:33
  SPEAKER_04: Uh yes.
• 2:34
  SPEAKER_04: I had to visit the doctor three times before I demanded a blood test because my GP felt there was nothing more than IBS, but my symptoms were although similar, but there was one uh issue whereby I felt these stabbing pains and a lump falling in forming inside uh of my lower abdomen that was left unanswered.
• 3:09
  SPEAKER_04: And I I took all the medication that they asked me to to take for for the course that they suggested, and it didn't work, things were just getting worse, and my symptoms were getting worse and worse.
• 3:21
  SPEAKER_04: So I felt the need, and my family really pushed me to go back to the doctors and get something done.
• 3:29
  SPEAKER_04: So once I got that blood test, then it just snowballed.
• 3:35
  SPEAKER_02: Okay, because if I'm correct, you went for a colonoscopy.
• 3:38
  SPEAKER_02: Now, did you go for the colonoscopy due to your blood results, or did you go for the colonoscopy because they previously misdiagnosed you with IBS?
• 3:45
  SPEAKER_04: So colonoscopy was a result of the blood results.
• 3:50
  SPEAKER_04: I also had to give them a stool sample, um, which painted quite a vivid picture for my consultant, who then suggested that we should go into a colonoscopy and yeah, from from that point they he himself thought it was Crohn's, nothing worse than that, but he wanted to be absolutely sure.
• 4:15
  SPEAKER_04: Um, and I'm thankful for that because had I not done that, I think the things were just escalating.
• 4:24
  SPEAKER_01: Yeah.
• 4:24
  SPEAKER_02: Yeah, I mean the the problem is there is sometimes a lot of cor correlation between cancer and Crohn's.
• 4:30
  SPEAKER_02: I mean, I know IBD patients are more prone to bowel cancer um as a whole because of obviously the nature of IBD.
• 4:40
  SPEAKER_02: I mean, how did you feel with regards to your cancer diagnosis?
• 4:44
  SPEAKER_02: Because it was your colonoscopy, wasn't it, that picked up the tumour?
• 4:48
  SPEAKER_04: Yeah, so I started experiencing shoes back in October of 2020 where I first started experiencing those stabbing sensations in my abdomen.
• 5:03
  SPEAKER_04: Um prior to that I was very, very healthy.
• 5:06
  SPEAKER_04: I was eating all my greens, smoothies.
• 5:10
  SPEAKER_04: Um I was very active, I was cycling, going to the gym, two very uh energetic children who love to be outdoors, and then all of a sudden I'm just I'm f I'm on the kitchen floor in pain.
• 5:29
  SPEAKER_04: Um within about 20 seconds it just passed, so I thought nothing more of it.
• 5:36
  SPEAKER_04: Got up, shook the residual pain, carried on making my coffee.
• 5:40
  SPEAKER_04: I honestly thought it was the fact that um during that time it was COVID, and there was that eat out to help out scheme.
• 5:50
  SPEAKER_00: Yeah.
• 5:50
  SPEAKER_04: And I may have overindulged um and needed to go back to, you know, healthy eating.
• 5:59
  SPEAKER_04: So out came the bullet blender, um, started those smoothies again, but it just wasn't working, it was just getting worse and worse.
• 6:08
  SPEAKER_04: Uh, and unfortunately, in the February, uh my father passed away because of COVID.
• 6:15
  SPEAKER_04: So thank you.
• 6:16
  SPEAKER_04: Um, so at that stage, you know, my health issues just took a back seat.
• 6:22
  SPEAKER_04: You know, uh being Islamic, we have to bury them ideally within 24 hours, but because of the predicament that he passed away with COVID, um, finding somewhere to house him whilst we get the burial site ready was proving to be an issue.
• 6:42
  SPEAKER_04: But nonetheless, I think that kind of brought home to the fact that I needed to get myself checked out to figure out what was going on with me.
• 6:52
  SPEAKER_04: So as I said, I went to the doctor's first occasion, they said it was stress because obviously my father passed away.
• 6:59
  SPEAKER_04: Um and working from home and all the the other mental health issues.
• 7:07
  SPEAKER_04: Uh I was just given four weeks worth of laxatives.
• 7:11
  SPEAKER_04: That didn't work.
• 7:13
  SPEAKER_04: Went back.
• 7:13
  SPEAKER_04: That's when they said I was IBS.
• 7:16
  SPEAKER_04: It didn't work, it just got worse, as I said.
• 7:19
  SPEAKER_04: And then finally, after the stall test, it it was apparent that I needed uh intervention.
• 7:28
  SPEAKER_04: Um and to kind of paint a picture, uh the stall test showed inflammation.
• 7:33
  SPEAKER_04: Now anything from a cold or a say tonsillitis, an infection which you can fight off with antibiotics, is around 200 units.
• 7:45
  SPEAKER_04: My stall test showed that I had 2,000 units of inflammation.
• 7:50
  SPEAKER_04: Um so that's why they they felt it needed to be uh looked into straight away.
• 7:58
  SPEAKER_02: So that was the fecal cow protectin.
• 7:59
  SPEAKER_02: Yeah.
• 8:00
  SPEAKER_02: Yeah.
• 8:01
  SPEAKER_02: Um I mean they discovered the tumour during your colonoscopy.
• 8:07
  SPEAKER_02: How did you feel when you went in for surgery?
• 8:09
  SPEAKER_02: Because when you went in for surgery, uh a stoma was mentioned, but it wasn't necessarily what you may wake up with.
• 8:18
  SPEAKER_02: It was it was 50-50, wasn't it, before you went in for surgery?
• 8:22
  SPEAKER_04: So when I first met my consultant um to discuss treatment of cancer and the outcomes, there was a mention of, you know, the possibility of having a stoma.
• 8:38
  SPEAKER_04: Um but at that time the the tumour itself w wasn't that big, wasn't really something that they were overly concerned with in terms of, you know, really going into detail what it's like to be uh to what I have now, a stoma bag.
• 8:59
  SPEAKER_04: Um but you know, from the point of chemotherapy, um I fell gravely ill after the second round.
• 9:09
  SPEAKER_04: So that stage I had a staph infection, um, which was life-threatening.
• 9:15
  SPEAKER_04: I was kept isolated, I was very delirious amongst uh other issues where the infection got into my right lung cavity and started tearing away at the lung wall uh and forming pockets, so it felt like I couldn't breathe because it was restricting the lung tubes.
• 9:34
  SPEAKER_04: Um and then after that, whilst I was being treated through antibiotics, they discovered that my bowel had perforated.
• 9:43
  SPEAKER_04: Oh nice so it was just bleeding all these toxins into my system.
• 9:46
  SPEAKER_04: So the antibiotics were fighting off the infection, I'll get better, go home.
• 9:51
  SPEAKER_04: And there was a stage where I came back ten hours later because you know, I had a fever, become delirious, and all sorts.
• 9:59
  SPEAKER_04: So at that point they said, You need to go into surgery.
• 10:03
  SPEAKER_04: Um, one because of the bowel perforating, and second is because the tumour had grown to the size of a small watermelon.
• 10:12
  SPEAKER_04: So it's just pushing up on all my organs.
• 10:15
  SPEAKER_04: Um so I was in a lot of pain.
• 10:20
  SPEAKER_04: Um and so whilst I was being carted down to theatre, I think at that point where there was a discussion of having a stoma, but because of my condition, um I wasn't really taking anything in at that time.
• 10:35
  SPEAKER_02: No, you wouldn't, not not with regards to emergency.
• 10:38
  SPEAKER_02: I mean, how how long was you in hospital for?
• 10:41
  SPEAKER_04: Um so I was in hospital at the beginning of July, and then had the surgery at the end of November, went into rehab, and then came out just before Christmas.
• 10:59
  SPEAKER_01: God for such a long time.
• 11:01
  SPEAKER_01: And how how how were your family during that time?
• 11:04
  SPEAKER_01: Were they able to visit so hard with children?
• 11:08
  SPEAKER_04: Yeah, there were restrictions on visitations.
• 11:12
  SPEAKER_04: Um my wife was the only person that could come and see me.
• 11:15
  SPEAKER_04: Um and she had an hour, maybe a little bit more depending on the nurse on duty.
• 11:21
  SPEAKER_04: Yeah.
• 11:21
  SPEAKER_04: Um who could come and see me.
• 11:23
  SPEAKER_01: Yeah, yeah.
• 11:25
  SPEAKER_04: So my children I was I was at a stage where I could be put into a chair and wheeled outside.
• 11:35
  SPEAKER_04: I think I'd I hadn't seen my children for possibly three, four months, maybe.
• 11:41
  SPEAKER_04: Oh god.
• 11:42
  SPEAKER_04: Um As I said, I did go home for for a short period.
• 11:44
  SPEAKER_04: Yeah.
• 11:45
  SPEAKER_04: But then I came back in because of feeling unwell.
• 11:49
  SPEAKER_04: Um so yeah, it was a difficult period for them.
• 11:54
  SPEAKER_02: How did you find because I know you said to me because you had the chemotherapy and the stoma and how bad your output was at the time, how did you feel, especially within those first couple of months after having the stoma placed, how did you feel?
• 12:10
  SPEAKER_02: Because I can imagine that you've got you've had pneumonia, you've had sepsis, you've had surgery, you've then had another surgery to place your stoma bag and to clear out the sepsis.
• 12:23
  SPEAKER_02: And then they've put you on chemotherapy.
• 12:26
  SPEAKER_02: How did you feel about having a stoma at that time?
• 12:29
  SPEAKER_02: Because I should imagine that it was quite daunting.
• 12:33
  SPEAKER_04: So coming out of surgery, uh, I was in ICU for a period because the surgery was meant to be four hours, it took seven.
• 12:45
  SPEAKER_04: I got taken out, and whilst my surgeon was on the phone to my wife, I was then red-lighted back into theatre because my heart uh was elevated to the point that it I could go into cardiac arrest.
• 13:00
  SPEAKER_04: So I spent quite some time um in ICU, and then I was put into isolation.
• 13:07
  SPEAKER_04: So I don't remember that.
• 13:08
  SPEAKER_04: All I remember is waking up in a room um and having this bag attached to my abdomen.
• 13:18
  SPEAKER_04: Um at that time I was fighting off sepsis, pneumonia.
• 13:24
  SPEAKER_04: Um there's a point where they had to because I had the staples holding my abdomen together, to take out some of the staples along the bottom to bleed out the the infection.
• 13:38
  SPEAKER_04: Uh so there was so much going on.
• 13:41
  SPEAKER_04: Um I couldn't really make sense of it.
• 13:44
  SPEAKER_04: The at the time when I when the sepsis was was treated and the pneumonia as well, um at that point I could concentrate on getting used to the bag.
• 13:57
  SPEAKER_04: Um and it it I kind of woke up in the days to think, you know, am I still dreaming?
• 14:05
  SPEAKER_04: Is this really me?
• 14:07
  SPEAKER_04: And it was just fluid at the time because I I couldn't eat anything solid.
• 14:13
  SPEAKER_04: I had three tubes going into the side of my neck, one with the food um supplement, the the other with painkillers, and another for for the antibiotics.
• 14:25
  SPEAKER_04: Um I had this tube up the nose that goes down to the stomach to stop me from uh being sick or vomiting.
• 14:33
  SPEAKER_04: Um so everything that I was taking in, it was all kind of pushed into this bag and you had nurses just emptying it um into like a pan, bed pan, and then seeming to get back up and carrying on with the rest of their days.
• 14:48
  SPEAKER_04: I think the other thing that I was trying to make sense with was this shooting pain up and down my leg, which was later diagnosed as uh severe and chronic nerve damage from the surgery.
• 15:01
  SPEAKER_04: Yeah.
• 15:02
  SPEAKER_04: So yeah, a lot going on.
• 15:04
  SPEAKER_04: Um You had to learn your because yeah, yeah, I couldn't couldn't bear any weight on my feet.
• 15:10
  SPEAKER_04: I think there's a a caption of me on on Instagram where there was two physios just carrying me from one end of the room to the other.
• 15:21
  SPEAKER_04: Um still to this day I look at that and think I can't recognise that person if you've actually ever seen myself like that.
• 15:29
  SPEAKER_02: You've been through so much.
• 15:30
  SPEAKER_02: It's quite difficult.
• 15:31
  SPEAKER_02: Um they w with everything with like your output and stuff, because I know you were saying it took you quite a long time to be able to change your own bag and that you was having the stoma nurses help you.
• 15:42
  SPEAKER_02: Were the stoma nurses helping you once you went home as well?
• 15:47
  SPEAKER_04: So they did come to visit, but most of the help was whilst I was in hospital.
• 15:53
  SPEAKER_04: Um to the point where they were showing me how to change it.
• 15:58
  SPEAKER_04: Um when I went into rehab, the nurses were still changing it then, but they were instructing me in how I would do it once I get home.
• 16:07
  SPEAKER_04: Um but I changed from kind of like an open bag to a closed one once I was at home, so that transition kind of had to learn myself, but I did have discussions with the stoma nurse uh about making that transition when it would happen.
• 16:25
  SPEAKER_04: So they did come up with me once, I think, in the first six months, to talk me through all of that.
• 16:31
  SPEAKER_02: Yeah, because I can imagine with everything that was going on, especially post-sepsis recovery, staph infection, pneumonia, that your stoma changed size quite a lot.
• 16:42
  SPEAKER_02: Um just a little curious, because you have a colostomy, and typically colostomies are bigger than an ileostomy.
• 16:50
  SPEAKER_00: Yeah.
• 16:51
  SPEAKER_02: So is what size is your colostomy?
• 16:53
  SPEAKER_02: Is it quite small?
• 16:54
  SPEAKER_04: This is the last time around 32.
• 16:58
  SPEAKER_04: Um I know there's a size metric, I can't whether that's centimetres or not.
• 17:03
  SPEAKER_02: Millimetres.
• 17:04
  SPEAKER_02: Millimetres.
• 17:05
  SPEAKER_02: Yeah, no, it's millimetres.
• 17:06
  SPEAKER_04: Yeah.
• 17:07
  SPEAKER_02: But I should imagine when you first had it done it was quite swollen.
• 17:10
  SPEAKER_02: So if it's 32 millimetres now, it would have been a lot a lot bigger.
• 17:14
  SPEAKER_02: It's amazing how quick.
• 17:16
  SPEAKER_02: It shrinks back.
• 17:17
  SPEAKER_02: It shrinks back and goes down to what size it's going to be.
• 17:21
  SPEAKER_02: I mean, it can change size with hydration, dehydration.
• 17:25
  SPEAKER_02: Yeah.
• 17:26
  SPEAKER_04: Well, only recently, so about a month ago, I got my I went to the hospital to see my stoma nurse and they measured it, and it actually had increased uh a couple of millimetres.
• 17:40
  SPEAKER_04: So it kind of goes up and down, depending on as you said.
• 17:44
  SPEAKER_02: It's it's normally based based on fluid.
• 17:46
  SPEAKER_02: So if you're dehydrated, your stoma shrinks.
• 17:49
  SPEAKER_02: If you're hydrated, your stoma does swell up a little bit.
• 17:52
  SPEAKER_01: Um so for those of you that don't already follow Mo, he is the king of graphics.
• 17:58
  SPEAKER_01: And I don't think there's another ostomate with a account for raising awareness like yours.
• 18:02
  SPEAKER_01: I mean, it stands out.
• 18:04
  SPEAKER_01: It's fantastic, we love it.
• 18:05
  SPEAKER_02: I mean, the graphics that he did the other day for becoming Responds ambassador was like, I thought Respond had done it, and then I had to look at it, I was like, that's not its own work.
• 18:14
  SPEAKER_01: That's its own work.
• 18:15
  SPEAKER_01: It's amazing.
• 18:16
  SPEAKER_01: Where's your where do you get your inspiration from?
• 18:19
  SPEAKER_04: Uh other Instagram users, to be honest with you, uh follow various charities and um influencers.
• 18:26
  SPEAKER_04: Uh and I just look at what what they're doing within their own niche and just think, how can I translate that to uh stomo ostomates?
• 18:37
  SPEAKER_02: I notice within your graphics you have um a lot of ribbons.
• 18:41
  SPEAKER_04: Now are they awareness ribbons or are they just a graphic that I uh got designed specially for my uh branding, as it were.
• 18:52
  SPEAKER_04: So you'll see it's a rainbow of of all the different cancer ribbons.
• 18:57
  SPEAKER_01: Yeah, it's beautiful.
• 18:59
  SPEAKER_04: Um thank you.
• 19:00
  SPEAKER_04: Um and yeah, I just got that made up because I just saw that, you know, as much as I'm trying to represent bowel cancer, ostomats, and everything, you know, it's just trying to do work in the wider communities.
• 19:14
  SPEAKER_01: So you're not just here to raise awareness of stomas, you're here to raise awareness for much more than that.
• 19:19
  SPEAKER_01: So do you want to share with us what it is that you're trying to do on your page?
• 19:24
  SPEAKER_04: So uh I'm an advocate for many things, including cancer ostomates, um representation within the ethnic minority groups as well.
• 19:38
  SPEAKER_04: Um and in the disability areas as well.
• 19:41
  SPEAKER_04: That's something that I want to get into um going into this year.
• 19:46
  SPEAKER_04: Um so I've worked with Bow Cancer UK previously.
• 19:52
  SPEAKER_04: I've been um lucky, I guess, to be a part of their campaigns.
• 19:59
  SPEAKER_04: Um they've been kind enough to have me have my story told in the likes of Chat Magazine and the Sunday Mirror.
• 20:12
  SPEAKER_04: Um and so I raised money for them, which was amazing.
• 20:18
  SPEAKER_04: Did the Acts of April campaign raise money?
• 20:21
  SPEAKER_01: And it wasn't that long ago you were learning to walk again, was it?
• 20:24
  SPEAKER_01: And already you've done all this, which is amazing.
• 20:27
  SPEAKER_02: Can I ask you how how was it?
• 20:28
  SPEAKER_02: Because obviously, with with your story going into something like the Sunday Mirror or going into chat magazine, how did you feel with the feedback?
• 20:40
  SPEAKER_02: Because I know obviously that kind of story being made public can receive positive as well as negative feedback from the community, Ostemak Community Council Community.
• 20:52
  SPEAKER_02: How did you feel that your story went across?
• 20:56
  SPEAKER_02: How do you do did do you feel that it helped other people?
• 20:59
  SPEAKER_04: Well, I hope it did.
• 21:01
  SPEAKER_04: I I mean I received nothing but um positive reviews and um I kind of I I only kind of selfishly focus on uh a very small circle, which is what I can control.
• 21:19
  SPEAKER_04: Yeah, my family, um, whatever else happens in and around that, I guess, is out of my control.
• 21:27
  SPEAKER_04: And if I although I haven't received any negative feedback, if I were, then um, you know, my purpose is education.
• 21:36
  SPEAKER_04: Um shame on them.
• 21:37
  SPEAKER_02: Yeah.
• 21:38
  SPEAKER_01: Yeah.
• 21:38
  SPEAKER_01: And it's a great way to see it.
• 21:39
  SPEAKER_01: Because I mean we all the three of us put ourselves out there.
• 21:42
  SPEAKER_01: We share a lot of ourselves that isn't typical for the everyday person.
• 21:46
  SPEAKER_04: So it's daunting to begin with.
• 21:49
  SPEAKER_04: You know, when I started writing my blog, um I never thought that people would read it, um, let alone give me feedback.
• 22:00
  SPEAKER_03: Yeah.
• 22:00
  SPEAKER_04: Um so to put yourself out there is challenging.
• 22:06
  SPEAKER_04: It's no I was nervous, nervous coming here.
• 22:10
  SPEAKER_04: Um But once you've broken that seal, I think you for me it's the next goal.
• 22:17
  SPEAKER_04: You know, well where can I go next?
• 22:19
  SPEAKER_04: How can I affect people in a positive way?
• 22:22
  SPEAKER_04: So doing this for the first time, um I don't know, maybe it's uh an area that I'll explore going forward.
• 22:30
  SPEAKER_01: Definitely.
• 22:31
  SPEAKER_01: Definitely.
• 22:32
  SPEAKER_01: And you you're now an ambassador for Respond, as we are, which is brilliant.
• 22:36
  SPEAKER_01: So you're welcomed into the family.
• 22:38
  SPEAKER_03: Thank you.
• 22:39
  SPEAKER_01: And yeah, so how did that go about?
• 22:42
  SPEAKER_01: And why did you want to be one as well?
• 22:45
  SPEAKER_04: Um good question.
• 22:47
  SPEAKER_04: Um for me, I didn't really know that you could change your supplier, the dispenser for your stoma products.
• 22:58
  SPEAKER_04: I when I saw Mary Rose's account uh talking about respond, and she had a link in her bio to for me to make inquiries, and I filled out a very short questionnaire, and I thought, you know, it could only get better because my previous supplier had so many issues with them in the past, whereby sometimes I would be left without my products, and an email would be left unread, or the products themselves would go missing uh upon uh dispatching.
• 23:32
  SPEAKER_04: Um and there was three occasions where I had to rearrange my uh colonoscopy because they would send me the wrong bags.
• 23:44
  SPEAKER_04: Uh so okay, is it?
• 23:48
  SPEAKER_04: I actually went online and purchased uh some bags.
• 23:55
  SPEAKER_01: No, that is not okay.
• 23:57
  SPEAKER_01: That no one should ever be put in that position.
• 23:59
  SPEAKER_04: But but it that's what it was.
• 24:01
  SPEAKER_04: I was just sick and tired because I had foolishly taken the prep thinking the the bags would arrive at some point, um, which they didn't.
• 24:12
  SPEAKER_04: I mean, when I opened the bags, when I opened the box, there were the different bags, and I'm thinking I've just taken the prep.
• 24:20
  SPEAKER_04: So what am I gonna do now?
• 24:22
  SPEAKER_04: Um so yeah, it was a mess.
• 24:24
  SPEAKER_04: Luckily we've got a shower room, so wash it all down.
• 24:28
  SPEAKER_04: Um but yeah, I would I just I was fed up of the supplier.
• 24:36
  SPEAKER_04: I was despising having a stoma at that stage.
• 24:39
  SPEAKER_04: I can imagine.
• 24:40
  SPEAKER_04: Because I was having so many issues with the bags themselves.
• 24:43
  SPEAKER_04: But upon seeing Mary Rose on Instagram, clicking the link, filling out the questionnaire, and then the next day I got a phone call from my lovely associate.
• 24:55
  SPEAKER_01: Um Do you remember their name?
• 24:57
  SPEAKER_01: Can you do a shout out?
• 24:59
  SPEAKER_04: I don't.
• 24:59
  SPEAKER_04: I remember saying sending the email to say I could find it.
• 25:05
  SPEAKER_01: No, it's okay, you don't have to do it.
• 25:07
  SPEAKER_01: It's okay.
• 25:08
  SPEAKER_01: So, well, I had a lovely call from Joe today, and she's lovely.
• 25:13
  SPEAKER_04: I think they all are.
• 25:16
  SPEAKER_01: I used to get a lot of calls from Kerry.
• 25:18
  SPEAKER_02: I think there's a best in the London office that I seem to get a lot.
• 25:22
  SPEAKER_02: Yeah.
• 25:22
  SPEAKER_02: Um and James.
• 25:24
  SPEAKER_02: I've never had I've never had an issue, so no, they're all brilliant, though.
• 25:28
  SPEAKER_01: They're marvelous.
• 25:29
  SPEAKER_04: They really are.
• 25:30
  SPEAKER_01: But you shouldn't have been made to feel like that.
• 25:32
  SPEAKER_01: And and you know, there's lots of reasons why you can not feel happy with your stoma that's out of your control, but the reasons you just said they shouldn't have happened, and there was no reason for it to happen, was there?
• 25:43
  SPEAKER_02: So that's you should you shouldn't be made to feel of despising a bag or despising your stoma because of bad service, basically.
• 25:54
  SPEAKER_00: No.
• 25:54
  SPEAKER_00: No.
• 25:55
  SPEAKER_04: It did, but but it was an opportunity uh whereby I'd made that call.
• 26:01
  SPEAKER_04: And you turned it into a positive.
• 26:03
  SPEAKER_04: Yeah.
• 26:03
  SPEAKER_04: The the spoke to two lovely ladies from the customer service team um who not only took note of the products that I was using, but also got to know me as a person and you know, talked about how active I am, um what what bags would would would I benefit from, what types of other products would work for me and my skin type.
• 26:31
  SPEAKER_04: Um so I was introduced to, you know, flange extenders, um, bitumeny um adhesive removers and wipes.
• 26:41
  SPEAKER_04: Um so God bless the dry wipes.
• 26:44
  SPEAKER_04: Mary Rose was this gateway, and it just They all hail Mary Rose.
• 26:49
  SPEAKER_04: We love you, Mary Rose.
• 26:51
  SPEAKER_04: The only disappointing thing from the get together, which was an absolute I mean, it blew my expectations.
• 27:01
  SPEAKER_04: It was just an amazing event, and and all the people there, uh including yourselves, not just saying the last one here.
• 27:07
  SPEAKER_04: Um yeah, it's not having to having met Mary Rose and thanked for it.
• 27:13
  SPEAKER_04: So thank you, Mary Rose.
• 27:15
  SPEAKER_01: Oh and she, you know what?
• 27:17
  SPEAKER_01: She's one of those, you know, sh she comes across so beautifully on her platform, but she's even nicer in person.
• 27:23
  SPEAKER_01: She's a sweetheart.
• 27:24
  SPEAKER_01: She's gorgeous, absolutely gorgeous.
• 27:27
  SPEAKER_04: But I mean, we we've exchanged words over social media, and and you know, sh she was I I did ask her the question before I accepted the invitation um to try and get an idea of what it's like.
• 27:44
  SPEAKER_04: What what is the world of uh you know the ostomes and get together and also got in touch with Keith and can't forget Keith.
• 27:51
  SPEAKER_04: Keith Fellow Welshman.
• 27:54
  SPEAKER_04: And yeah, it's just nothing but praise.
• 27:57
  SPEAKER_04: So yeah.
• 27:58
  SPEAKER_04: I got to meet one of my heroes.
• 28:01
  SPEAKER_01: Oh, that's cute.
• 28:02
  SPEAKER_01: Given the thing is Bo, you're you're already going to be other people's heroes.
• 28:06
  SPEAKER_04: I I hope so.
• 28:10
  SPEAKER_04: They can look up to me and go, No, well, we're proud of you.
• 28:13
  SPEAKER_04: Definitely.
• 28:14
  SPEAKER_04: Uh then I think that's a job well done.
• 28:16
  SPEAKER_02: I mean, I think all of us as ambassadors, we are like family, aren't we?
• 28:20
  SPEAKER_02: We all get on really well.
• 28:21
  SPEAKER_01: That's a sense of quote the brand, but it's a family.
• 28:24
  SPEAKER_01: It's a family.
• 28:26
  SPEAKER_04: It really is.
• 28:26
  SPEAKER_04: It really is.
• 28:27
  SPEAKER_04: And it lives up.
• 28:28
  SPEAKER_01: I know, like it actually is.
• 28:31
  SPEAKER_01: Like it sounds corny and it sounds a bit ick saying it out loud like it, but it is, it is, and it's lovely to be part of, wouldn't it?
• 28:39
  SPEAKER_02: Like it's the type of people that we are though, as well, and the way all of us are as a group, I kind of feel like now within the ostomy community that everybody's kind of catered for and represented, we're not all put across as picture perfect.
• 28:57
  SPEAKER_02: We've all got our flaws and scars and issues, and I feel like we're kind of for a company, I think we're more representative as ambassadors for the Ostomy community as a whole.
• 29:11
  SPEAKER_01: So, um, Mo, what would you what advice would you give to someone who doesn't feel like they're being represented?
• 29:17
  SPEAKER_01: What advice could you give them?
• 29:19
  SPEAKER_04: Um just break that seal, just just put yourself out there.
• 29:26
  SPEAKER_04: Um because you open yourself up to yeah, criticism.
• 29:31
  SPEAKER_04: Um but that's how you learn.
• 29:33
  SPEAKER_04: But since I've done it, I've got nothing but praise.
• 29:36
  SPEAKER_04: There's been a few, but I think if you look at what I'm trying to do, trying to make a a positive impact um in all the fields that I'm working with.
• 29:49
  SPEAKER_04: Um but for me it's reaching out as well, just just talk.
• 29:55
  SPEAKER_04: If I hadn't had spoken or exchanged messages with Keith or maybe Rose, then I don't think I would be sitting here today.
• 30:05
  SPEAKER_04: I would have declined the invitation.
• 30:08
  SPEAKER_04: Purely because I thought it would be nothing more than a Kardashian episode, but it wasn't, it was lovely.
• 30:14
  SPEAKER_01: We are far from the moon, we are far from the flattery Mo.
• 30:18
  SPEAKER_01: I mean, you can come back.
• 30:21
  SPEAKER_01: Oh I love Mo.
• 30:23
  SPEAKER_01: Sorry, previous, but he's my thave.
• 30:27
  SPEAKER_02: I mean, you you were you were saying that you've you felt that as you've quoted yourself being an ethnic minority, that you're not represented enough across the community, whether it be the cancer community, stoma community, you feel that you're not represented enough.
• 30:49
  SPEAKER_02: How do you feel?
• 30:50
  SPEAKER_02: Is he now being a ambassador for respond?
• 30:54
  SPEAKER_02: How do you feel about that?
• 30:57
  SPEAKER_04: Well, I'm I'm glad I took the leap to to get involved.
• 31:02
  SPEAKER_04: I never intended to to become an ambassador.
• 31:05
  SPEAKER_02: I just I don't think any of us intended to be.
• 31:09
  SPEAKER_04: What I did was I sent an email to say that, you know, I've received the service from these two individuals.
• 31:16
  SPEAKER_04: They were lovely, they were great.
• 31:18
  SPEAKER_04: Um and I received my delivery promptly and everything was there.
• 31:24
  SPEAKER_04: Fantastic, two thumbs up.
• 31:26
  SPEAKER_04: Um but I also looked at what was being represented on uh Response website.
• 31:35
  SPEAKER_04: So if I saw the page where they promote their ambassadors, I didn't really see anyone like me.
• 31:44
  SPEAKER_04: So I kind of just prompted them to say, you know, it'd be great if you can have someone from, say, an ethnic minority group.
• 31:53
  SPEAKER_04: I never intended that would be me.
• 31:55
  SPEAKER_04: I was just merely pointing them in a direction.
• 31:58
  SPEAKER_04: But when I was invited and when I was asked to become an ambassador, I couldn't say no.
• 32:05
  SPEAKER_04: My my children were saying just do it, it'll be great.
• 32:08
  SPEAKER_01: They must be so proud, do you?
• 32:09
  SPEAKER_04: Absolutely.
• 32:10
  SPEAKER_04: And as I said, that's my life ambition, you know, for them to be proud of me.
• 32:13
  SPEAKER_02: See the thing is you've put yourself out there, you've crossed that barrier, and by you crossing that barrier, you could potentially help someone else who may have been in a similar situation situation to you to also cross that barrier.
• 32:25
  SPEAKER_03: Absolutely.
• 32:26
  SPEAKER_02: So it's about raising awareness and helping those that may not feel as confident or as open as you did at the time.
• 32:33
  SPEAKER_04: Yeah, yeah.
• 32:34
  SPEAKER_04: I think it takes a generation, but we're at a stage now where I think we can make up ground for what's been lacking in the past.
• 32:45
  SPEAKER_04: I mean, I've done my own research and if I quote a few, if you don't mind.
• 32:50
  SPEAKER_04: So the likes of Bowel Cancer sorry, Bowel Research UK state that ethnic minority groups have historically been underrepresented in the IBD or inflammatory bowel disease research here in the UK.
• 33:10
  SPEAKER_04: Um in fact, when it comes to medical trials, more than 90% of the patients are Caucasian.
• 33:20
  SPEAKER_04: And what they're seeing is that there is a rise in the number of cases of people from ethnic minority groups who are being diagnosed with AIBD, um, but still there's so little information there.
• 33:39
  SPEAKER_04: Um and they're struggling to really figure out what to do.
• 33:46
  SPEAKER_04: Even the likes of Cronin Colitis UK, uh another charity, who say exactly the same thing.
• 33:53
  SPEAKER_04: They they confirm that uh IBD is is growing amongst uh people within the ethnic minority groups.
• 34:01
  SPEAKER_04: Uh they they say that not only is the research limited, it's also outdated.
• 34:09
  SPEAKER_02: It's also it's also very flawed.
• 34:11
  SPEAKER_02: I know from personal experience with IBD.
• 34:14
  SPEAKER_02: I go to St.
• 34:15
  SPEAKER_02: Thomas's, I go to Guy's Hospital, I'm London-based.
• 34:18
  SPEAKER_02: There are a lot of students in there who are doing research for CCUK or BAU BAO UK.
• 34:25
  SPEAKER_02: They're giving people these questionnaires to fill in whilst they're having um immunosuppressant therapy or and not necessarily going down to the colorectal units or the GI units to see anybody else down on those to give them.
• 34:42
  SPEAKER_02: It's just literally a small demographic that are normally quite young that are being targeted within the chemotherapy unit for treatment for IBD, and they're not tackling the wider populace.
• 34:56
  SPEAKER_02: No.
• 34:56
  SPEAKER_02: It's very limited.
• 34:57
  SPEAKER_02: Incredibly limited.
• 34:58
  SPEAKER_04: I mean, the I mean, there's certainly people that are trying.
• 35:01
  SPEAKER_04: Um I know the if I just quote one more.
• 35:04
  SPEAKER_02: Yeah, sure.
• 35:05
  SPEAKER_04: Uh the British Journal of Nursing uh state that the issue lies, and they say this they've done a study which looks into uh the engagement within ethnic communities uh with regards to screening programs for cancer.
• 35:21
  SPEAKER_04: Um and that study says that the screening service is a critical component of cancer prevention and early detection.
• 35:32
  SPEAKER_04: Uh, however, individuals from deprived areas or non-white areas are less likely to engage with the UK's National Cancer Screening Service.
• 35:47
  SPEAKER_04: Um I mean they go on to mention the reasons why, and um it's very much around awareness.
• 35:55
  SPEAKER_02: Yeah.
• 35:56
  SPEAKER_04: They state there a lack of education, knowledge, uh, and awareness within those communities.
• 36:01
  SPEAKER_04: I vote here cultural determinants, uh, which they say it could be religion, could be cultural, um it could also be the the kind of social attitudes within those communities.
• 36:14
  SPEAKER_04: Yeah.
• 36:15
  SPEAKER_04: Yeah.
• 36:15
  SPEAKER_04: Uh the stigma uh that uh they may feel towards uh either being diagnosed or or the possibility of having cancer.
• 36:27
  SPEAKER_04: But it also includes the fear of having cancer and the fear of the potential outcome, which death.
• 36:35
  SPEAKER_02: Um so because of these kind of negative attitudes, um I think we need to really penetrate those it we it does need to be penetrated, but when you were saying with regards to cultural and generation and with it changing within a generation, so my nan's 80, my nan's had bowel cancer, my nan's bowel was totally destroyed by the radiation therapy, and my nan is incontinent, but she will not have a stoma.
• 37:08
  SPEAKER_02: Yeah, she refuses to have a stoma because she's not having one of those, but it's okay for me.
• 37:16
  SPEAKER_02: And I've spent the last 10 years trying to get my nan to go in and have the surgery because they've told her she needs to have it, it will make her quality of life better.
• 37:26
  SPEAKER_02: And she's like, no, not doing it, not having it, no, not even thinking about it.
• 37:32
  SPEAKER_02: And it's absolutely crazy.
• 37:34
  SPEAKER_02: Yet she'll talk to all her friends and all her old friends that have got IBD or have had stoma surgery are all messaging me on Facebook from my nan's Facebook, asking me for advice and tips, yet my nan will not go and have it done.
• 37:47
  SPEAKER_02: It's it's it's ludicrous.
• 37:49
  SPEAKER_04: It's I think it's uh, you know, I've got a friend who I didn't even know, but after coming out of hospital and getting back on my feet, um I visited the the shop that he works in and um I explained to him because he could see it through my t-shirt, this pouch, and he said, Do you mind if I ask?
• 38:10
  SPEAKER_04: Is that a stoma?
• 38:11
  SPEAKER_04: And I said, Yeah, yeah, yeah.
• 38:12
  SPEAKER_04: And he's like, What's it like to live with?
• 38:14
  SPEAKER_04: So I explained the kind of pros and cons that I um have ex experienced, and he said that he's been living with Crohn's and in agony for for a number of years, but although he's been advised to to go down that route and have a stoma, he he's decided against it because there there is that stigma, there is that association that you know I think there's people that don't want to talk about their health and think that is itself seen as like a health issue.
• 38:47
  SPEAKER_02: Yeah.
• 38:47
  SPEAKER_02: Um there is there is a lot of generational gaps.
• 38:50
  SPEAKER_02: We're we come from a generation, especially like being born in the 80s, growing up through the 90s.
• 38:56
  SPEAKER_02: We're of a generation that have discovered the internet and are kind of quite open to talking and discussing things.
• 39:03
  SPEAKER_01: You can't underestimate that.
• 39:04
  SPEAKER_01: It's um so different to what was prior.
• 39:07
  SPEAKER_02: Yeah, whereas my mum loves me, she wants to look after me and my health, but I don't talk about my bag in front of her.
• 39:16
  unknown: Really?
• 39:16
  SPEAKER_00: Really?
• 39:17
  SPEAKER_02: Yeah, my my fa my family, so my aunt and my cousin, absolute supportive, can go swimming with them.
• 39:24
  SPEAKER_02: Somebody's staring at me, they'll have a go at them.
• 39:27
  SPEAKER_02: But my mum won't talk about it.
• 39:29
  SPEAKER_02: She'll talk about the time on my side or talk about the fact that I need to be sorted out, but we don't talk about we don't talk about poo.
• 39:36
  SPEAKER_02: We've got really bad toilet humour.
• 39:38
  SPEAKER_02: It's like to the point of people sat there listening, really, you guys are really going into that.
• 39:42
  SPEAKER_01: I think though, like if you if you've got a bowel condition and like say the two people in my household both have stomas, if you don't have toilet humour that's to the line, then there's you know, it's more we're all sat there talking about toilet humour.
• 39:56
  SPEAKER_02: My mum's like, shut up, go away, don't talk about it.
• 39:58
  SPEAKER_02: I I don't care, I have to deal with that in my day-to-day without you guys talking about it.
• 40:02
  SPEAKER_01: So, Mel, what's it like being an ostoma in your community?
• 40:05
  SPEAKER_01: Can you share with us a little insight?
• 40:08
  SPEAKER_04: Uh yeah, I mean, with regards to myself, as far as I'm aware, I'm the only one to to have a stoma, carry that around with me.
• 40:18
  SPEAKER_04: Um if you look at the religion where it states that, you know, you you fast for a month, Ramadan.
• 40:28
  SPEAKER_04: Um for me I'm exempt because of the medication that I'm on.
• 40:33
  SPEAKER_04: But if I wasn't, then I guess it would probably made my life easier because I'm only eating certain times today.
• 40:41
  SPEAKER_04: I only need to change my pouch once a day.
• 40:46
  SPEAKER_04: So um for me it worked quite well.
• 40:49
  SPEAKER_04: I think the only issue surrounding it is, you know, when you you're you're in a mosque and people are praying silently and the stomach decides to erupt.
• 41:00
  SPEAKER_04: Yeah, quite and they're kind of looking around to go, where did that come from?
• 41:05
  SPEAKER_01: Yeah.
• 41:05
  SPEAKER_04: Um then it's having that discussion and opening up about it.
• 41:09
  SPEAKER_04: I I I wear it with pride.
• 41:11
  SPEAKER_05: Yeah.
• 41:11
  SPEAKER_04: I I don't mind standing there in a t-shirt and as I press my hands on it to to praise.
• 41:18
  SPEAKER_04: Um it it does create conversation.
• 41:22
  SPEAKER_01: Has your faith helped you on this journey more than you know, has have you got to lean on it a lot more than you say would have in your day-to-day life?
• 41:30
  SPEAKER_04: Absolutely.
• 41:31
  SPEAKER_04: I think the whole journey through um the point at which I was diagnosed and you know having to ask for strength to to tell my mother about having cancer after a her life partner just passed away and to to talk about it with my children uh after they've been introduced with the concept of death and then going through all of that thinking, you know, I c I can't see an end to this.
• 42:06
  SPEAKER_04: And um I think it was just people that not just my faith, but people hoping and praying for me.
• 42:14
  SPEAKER_04: Um, you know, because I I know family friends that went to Saudi Arabia and religious uh the visited the religious cities of Mecca and Medina and they say they prayed for me there and you know that gives me strength too.
• 42:32
  SPEAKER_04: And I leaned on the parish as well at the hospital.
• 42:36
  SPEAKER_04: It wasn't just the Imam, it was the the Father Michael there as well, and we we sat there and we he prayed uh uh for me and um people with all kinds of uh different uh religious beliefs sent me their praise and wishes.
• 42:55
  SPEAKER_04: Um so I'm very, very grateful for that.
• 42:57
  SPEAKER_01: That's lovely, that's beautiful.
• 42:59
  SPEAKER_01: Well, Mo, I think you're doing a brilliant job with representation, and I think you should give yourself a massive pat on the back.
• 43:07
  SPEAKER_01: And thank you so much for being our third guest.
• 43:10
  SPEAKER_01: And thank you to anyone that has tuned in to our third episode of Be on the Pouch, and we will catch you again next time.
• 43:17
  SPEAKER_01: So we'll see you soon.
• 43:19
  SPEAKER_01: Next episode.
• 43:20
  SPEAKER_01: Thanks, Mo.
• 43:20
  SPEAKER_01: Bye, bye.