Latest / Beyond the Pouch / Omma on Culture, Faith & Life with a Stoma | Beyond the Pouch S3 EP4

Transcript

Omma on Culture, Faith & Life with a Stoma | Beyond the Pouch S3 EP4 · Beyond the Pouch

• 0:00
  SPEAKER_04: In terms of your community and how you are represented, did you could you see anyone online that had gone through what you had?
• 0:09
  SPEAKER_01: I didn't know where to look.
• 0:11
  SPEAKER_01: I I didn't see anybody who looked like me.
• 0:14
  SPEAKER_01: Automatically I felt like I can't relate.
• 0:17
  SPEAKER_01: I can't ask people questions about like what do I do when it comes to praying.
• 0:21
  SPEAKER_01: And then especially because I like wear hijab as well, so I'm visibly Muslim too, and I was kind of looking for that kind of community.
• 0:27
  SPEAKER_00: Navigating this space must be really difficult.
• 0:29
  SPEAKER_01: There's been periods when I have been able to fast, so it's a really important month for Muslims.
• 0:34
  SPEAKER_01: And when you can't fast, which is like the integral part of it, like you do feel the loss of that, and I've definitely felt that as well.
• 0:41
  SPEAKER_04: One question that a lot of followers will be wanting us to ask you is about clothing and how you dress, especially how you navigated that with two stoma bags.
• 0:51
  SPEAKER_01: I've always had to think about what I wear and what suits my body shape, and then having a stoma on top of that, it will be a new normal for you, but it will become normal.
• 1:01
  SPEAKER_01: And just find your own community.
• 1:03
  SPEAKER_01: If you don't see people in your real life who can relate to you, like that's the amazing part of social media.
• 1:17
  SPEAKER_00: Here we go, then mate.
• 1:18
  SPEAKER_00: Episode four.
• 1:19
  SPEAKER_00: Yes.
• 1:19
  SPEAKER_00: How are we feeling?
• 1:20
  SPEAKER_04: Um for this one.
• 1:21
  SPEAKER_00: Oh, it's gonna be exciting.
• 1:22
  SPEAKER_00: Who have we got on today?
• 1:23
  SPEAKER_04: We've got Omar on today.
• 1:25
  SPEAKER_00: What are we gonna be talking about?
• 1:26
  SPEAKER_04: And she is here to talk all about culture and community, which is something we haven't covered on the pod before.
• 1:31
  SPEAKER_04: So this is gonna be very important for a lot of people out there that are not seeing that representation.
• 1:37
  SPEAKER_04: So we've got a lot to cover.
• 1:39
  SPEAKER_00: It's gonna be so exciting.
• 1:40
  SPEAKER_00: And like, you know, looking at her social, she's done some incredible things.
• 1:43
  SPEAKER_00: She's been to Chicago, she's got a book club going.
• 1:46
  SPEAKER_00: So I can't wait to have her on.
• 1:48
  SPEAKER_04: Yeah, it's gonna be great.
• 1:48
  SPEAKER_04: It's gonna be a good one.
• 1:49
  SPEAKER_04: Right, let's get her in.
• 1:50
  SPEAKER_04: Yes.
• 1:55
  SPEAKER_00: So, welcome everyone to the fourth episode of Beyond the Pouch with Omar.
• 1:59
  SPEAKER_00: Lovely to have you.
• 2:00
  SPEAKER_01: Thank you so much for having me.
• 2:02
  SPEAKER_01: Thank you for coming.
• 2:03
  SPEAKER_00: Right, before we get off with diving into your story, knowing much more about you and all the stuff we want to talk about, we're gonna do some quick fire questions.
• 2:10
  SPEAKER_01: Okay, let's go for it.
• 2:11
  SPEAKER_00: Yeah, so biggest myth about stoma is that you want to have busted.
• 2:14
  SPEAKER_01: Um, it's your fault that you have a stoma.
• 2:17
  SPEAKER_00: Interesting.
• 2:18
  SPEAKER_01: We haven't had that one.
• 2:19
  SPEAKER_01: No, that's really interesting.
• 2:20
  SPEAKER_01: We haven't had that one.
• 2:22
  SPEAKER_00: What's the most empowering moment you've had since having a stoma?
• 2:25
  SPEAKER_01: Um, maybe not a moment exactly, but just having a lot of people contact me, message me for advice, whether it's like cultural advice or religious advice, that's been really empowering.
• 2:36
  SPEAKER_01: Oh love that.
• 2:37
  SPEAKER_01: I love that.
• 2:38
  SPEAKER_00: Um, what's one word you'd have to describe your relationship with your body right now?
• 2:42
  SPEAKER_01: Um, it's complicated.
• 2:45
  SPEAKER_00: Fair, fair, fair, fair.
• 2:47
  SPEAKER_00: And a song or a quote that always lifts your mood.
• 2:50
  SPEAKER_01: Um Allah or God uh doesn't burden a soul more than it can bear.
• 2:56
  unknown: Wow.
• 2:56
  unknown: Okay.
• 2:57
  SPEAKER_00: That's lovely.
• 2:58
  SPEAKER_00: Oh, fantastic.
• 2:59
  SPEAKER_04: Already there are loads of things to us.
• 3:02
  SPEAKER_04: Oh, it's gonna be awesome.
• 3:03
  SPEAKER_04: Oh, well, thank you so much for coming from London today.
• 3:06
  SPEAKER_04: Um we are obviously you're here because you have a stoma, but there's so much more to you than that that we're gonna get into.
• 3:13
  SPEAKER_04: But firstly, how did you come to have one?
• 3:16
  SPEAKER_04: Tell us all about it.
• 3:17
  SPEAKER_01: So I was about twenty one, maybe, when I first started showing s symptoms, but didn't realise I was showing symptoms.
• 3:26
  SPEAKER_01: And then I went through the process of being diagnosed with Crohn's disease, and then within less than a year of being diagnosed, I had a spontaneous perforation after undergoing um an examination under anesthetic and I needed emergency surgery and I had a colostomy.
• 3:47
  SPEAKER_01: And initially they told me it would be temporary for six months just while my gut healed, but um it just never ended up healing, like I never went into remission and eventually I had a procdectomy, so now the it the colostomy was permanent, and then a year ago I had a obstruction and they needed to remove my bowel completely, and now I have a permanent iliostomy.
• 4:13
  SPEAKER_01: So I've kind of been on both sides of the um stoma um Yeah.
• 4:19
  SPEAKER_01: Yes, I've had both kinds of stomas.
• 4:21
  SPEAKER_04: What a unique position to be in.
• 4:22
  SPEAKER_04: So how much bowel do you have left, do you know?
• 4:25
  SPEAKER_01: Um I don't have any of my large anymore, and I actually don't know.
• 4:29
  SPEAKER_01: I think because again, my obstruction was emergency surgery um that I didn't even ask.
• 4:36
  SPEAKER_04: And I doubt they got a measuring tape out and just to tell you after.
• 4:40
  SPEAKER_04: What caused the obstruction?
• 4:42
  SPEAKER_04: No idea.
• 4:42
  SPEAKER_01: And I think that's what I found really difficult to come to terms with because at the that point I felt like I was quite healthy.
• 4:50
  SPEAKER_01: I was in remission, I had started working out, I felt quite well in myself, and then it just hit me all of a sudden.
• 4:57
  SPEAKER_01: I went to an appointment, um, and then on the way back, I just started feeling like crampy and in pain.
• 5:04
  SPEAKER_01: Didn't think anything of it.
• 5:05
  SPEAKER_01: I just thought, okay, maybe I've eaten something, or it's Crohn's, it's just Crohn's pains.
• 5:08
  SPEAKER_05: Yeah, yeah, yeah.
• 5:09
  SPEAKER_01: And then it just progressively got worse.
• 5:11
  SPEAKER_01: I started vomiting, and then I just knew at that point that this isn't normal.
• 5:14
  SPEAKER_01: I've kind of felt this pain before, and it reminded me of when my bow bowel first perforated and that sort of level of pain, and then I just went straight to Amy, and I was I remember like it was agony just to walk the few steps to Amy, and as soon as I got in, I was just like, Yeah, this is the symptoms, and she was like, Okay, take a seat, and I was like, I need a sick bowl.
• 5:39
  SPEAKER_01: And then I was just like vomiting into the bowl.
• 5:41
  SPEAKER_01: Then they tried to do the whole um you know when they put the tube down.
• 5:44
  SPEAKER_01: The NG tube.
• 5:45
  SPEAKER_01: Yeah, the NG tube.
• 5:46
  SPEAKER_01: Oh the waist.
• 5:48
  SPEAKER_01: I hate the NG tube.
• 5:51
  SPEAKER_01: Do you know what actually did help?
• 5:53
  SPEAKER_01: Which I asked the nurse to do, I was like, Can you numb my throat?
• 5:56
  SPEAKER_01: And then she was just like, Yeah.
• 5:58
  SPEAKER_01: So, guys, if you ever need an NG tube, get them to numb your throat.
• 6:01
  SPEAKER_01: It makes a massive difference because it helps you like swallow it down.
• 6:05
  SPEAKER_01: Yeah.
• 6:05
  SPEAKER_01: Otherwise, I I just kept gagging and it was oh, it's horrendous.
• 6:09
  SPEAKER_00: That's honestly like the amount of people that you can buy that over the counter.
• 6:13
  SPEAKER_04: Like you could I buy it for my kids if they've got a sore throat.
• 6:15
  SPEAKER_04: Yeah.
• 6:17
  SPEAKER_04: No, no, I don't know.
• 6:19
  SPEAKER_04: I don't know if you can.
• 6:20
  SPEAKER_04: I haven't tried.
• 6:21
  SPEAKER_04: Um oh gosh.
• 6:23
  SPEAKER_04: Okay, so you have experienced all of that, so there is lots and lots to talk about.
• 6:29
  SPEAKER_04: Now you're here to uh cover quite an important topic that isn't shared enough, is it, at all.
• 6:36
  SPEAKER_04: Um so in terms of your community and how you are represented, did you could you see anyone online that had gone through what you had that looked like you?
• 6:48
  SPEAKER_01: No, not at all.
• 6:49
  SPEAKER_01: I think because I was diagnosed like I think it's been about 14, 15 years now, and I remember the first time I went to like an IBD meetup in East London, um, and I went there and everybody was old and they were white.
• 7:07
  SPEAKER_01: And that was really difficult for me because everyone was so friendly, they were really lovely, but automatically I felt like I can't relate.
• 7:14
  SPEAKER_01: Um I can't ask people questions about like what do I do when it comes to praying and how do I fast and you know those kind of issues and like with food and things like that.
• 7:26
  SPEAKER_01: So I think I went once and then I never went back.
• 7:29
  SPEAKER_01: And when I tried to look online as well, again, I didn't know where to look.
• 7:35
  SPEAKER_01: I I didn't see anybody who looked like me.
• 7:38
  SPEAKER_01: And then especially because I like where hijab is also I'm visibly Muslim too, and I was kind of looking for that kind of community.
• 7:44
  SPEAKER_01: So because I do have really supportive family and friends, I decided that I would start sort of writing about it.
• 7:53
  SPEAKER_01: Um and I started sort of blogging initially and then like posting on Instagram.
• 7:57
  SPEAKER_01: I'm really inconsistent with it, but I'm great on DMs.
• 8:01
  SPEAKER_01: So if you ever want to message me, you are pretty fast, yeah.
• 8:04
  SPEAKER_04: To be fair.
• 8:05
  SPEAKER_04: We message everyone that comes on, and you were like Yeah.
• 8:09
  SPEAKER_01: So yeah, my DMs are always open, but I just um I think I just have a sort of love-hate relationship with social media because I was always a pressure to like post.
• 8:19
  SPEAKER_01: Yeah, and I just never know what to I always feel really vain just posting pictures of myself.
• 8:24
  SPEAKER_01: So you look fabulous in them, so I should carry on.
• 8:27
  SPEAKER_04: Um no, but that that's so lovely that you are being what you needed, exactly because it's gotta start from somewhere, hasn't it?
• 8:34
  SPEAKER_01: Yeah, like I can't complain if I'm not willing to do something about it myself.
• 8:38
  SPEAKER_00: So I'm sure you'll help in so many others as well.
• 8:41
  SPEAKER_00: That also in that space going, I want to see someone that you know that's been represented, etc.
• 8:46
  SPEAKER_01: Yeah.
• 8:46
  SPEAKER_01: And it was the same with like literature when you'd be given sort of leaflets and stuff about like Crohn's IBD or like stomas, and I just never ever saw anybody like me.
• 8:57
  SPEAKER_01: So again, it was really hard for me to relate, and even when I'd see like pictures of stomas or scarring, it'd be these really neat little scars, really beautiful looking abdomens, and really like still got the abs intact and everything, and I was like, oh, that's mine is horrendous.
• 9:15
  SPEAKER_01: You know, mine doesn't look like that at all.
• 9:17
  SPEAKER_01: Um so yeah, like things like that really make more of a difference or an impact than I think they or companies or people realise.
• 9:26
  SPEAKER_01: Yeah, yeah.
• 9:27
  SPEAKER_04: And I suppose that also lent itself into the acceptance of it.
• 9:30
  SPEAKER_04: Exactly.
• 9:31
  SPEAKER_04: Like how you feel about your body, because if you're not seeing something, you're gonna feel like, well, what's wrong with me?
• 9:36
  SPEAKER_04: Exactly.
• 9:37
  SPEAKER_01: And that can snowball, can't it?
• 9:39
  SPEAKER_01: Definitely, and I think like normal is such a subject subjective word.
• 9:42
  SPEAKER_01: Like normal means something different for everybody.
• 9:44
  SPEAKER_01: Yes.
• 9:45
  SPEAKER_01: So but we have to normalise it so that we have a new normal for us because life is so different now after having a stoma.
• 9:55
  SPEAKER_04: Yeah, and you and you speak on your socials a lot about grieving, yeah, which is a process I think I would I don't know if you felt like that when you had yours, and I know I not everyone does, but a lot of people share that they do.
• 10:11
  SPEAKER_04: Yeah.
• 10:12
  SPEAKER_04: And how did you work through that then?
• 10:15
  SPEAKER_01: Uh I think I'm still working through it, to be honest with you.
• 10:17
  SPEAKER_01: I think it's gonna be like a a long-term thing because there'll be good times and bad times.
• 10:23
  SPEAKER_01: Um, but I think it was because I got my stoma when I was in my early 20s, and then I had such a complicated history, like I never was in remission, and because of that, I felt like I lost my 20s, and you always hear like through like media and films and TV and stuff, um, that your 20s are the best years of your life.
• 10:46
  SPEAKER_01: Oh, yeah.
• 10:47
  SPEAKER_01: Um obviously that changes as you get older.
• 10:49
  SPEAKER_04: Yeah, 20s were great cyber.
• 10:52
  unknown: Yeah.
• 10:52
  SPEAKER_04: Yeah, yeah.
• 10:53
  SPEAKER_01: And that's what it is, but it's like that's what you kind of hear growing up.
• 10:57
  SPEAKER_01: And for me, my 20s were in hospital a lot.
• 10:59
  SPEAKER_01: I didn't get time to develop a career.
• 11:02
  SPEAKER_01: I had just finished university when I got really sick.
• 11:05
  SPEAKER_01: So because of that, I felt like I've had to grieve my 20s and even my 30s.
• 11:10
  SPEAKER_01: I'm in my 30s now, but again, it's been really difficult.
• 11:14
  SPEAKER_01: Like when I see all my peers or my friends, um, and they've got these illustrious careers and they're making great money and they're able to do things, and I haven't been able to do that.
• 11:24
  SPEAKER_01: Um, so I think that's where the grief comes into it, where I have to try and separate myself from the the version of myself I thought I'd have growing up.
• 11:36
  SPEAKER_01: Like you have this kind of timeline in your head that you know you go to school, you go to university, you get a career, then you get to go and like travel and do these amazing things, and I haven't been able to do that.
• 11:46
  SPEAKER_01: So I think that's where my grief comes into it, where I'm trying to learn to get over that and just accept life for what it is and try and make the best of it.
• 11:56
  SPEAKER_04: Yeah, yeah, yeah.
• 11:57
  SPEAKER_04: And it's it it's you know, there's no quick fix for that.
• 12:00
  SPEAKER_04: Exactly.
• 12:00
  SPEAKER_04: Yeah, it's gonna be.
• 12:02
  SPEAKER_00: I think everyone's also, to your point, actually, everyone's on their own timeline.
• 12:05
  SPEAKER_00: Yeah.
• 12:05
  SPEAKER_00: And like your expectations are always gonna be different.
• 12:08
  SPEAKER_00: And I don't know if it's different from you know, growing up and seeing everyone else do various things and what you know if parents and families have done, but everyone's on their t own timeline, especially with health.
• 12:17
  SPEAKER_00: Like literally, like no one expects, even with from your story, no one expects to have to have major surgeries, like two major surgeries as well.
• 12:23
  SPEAKER_01: Yeah, I've I can't even count the number of surgeries I've had over the years.
• 12:27
  SPEAKER_01: Like I've had some I think there was a point where I was having surgery every year.
• 12:31
  SPEAKER_01: Really?
• 12:32
  SPEAKER_01: I've had last year I had surgery, the year before that I had surgery as well.
• 12:36
  SPEAKER_01: So I've I've had a lot.
• 12:38
  SPEAKER_01: So because of that, like that always kind of interrupts things because you need like a long time to recover afterwards.
• 12:44
  SPEAKER_01: And I think you you just don't anticipate how how how much of a big deal surgery actually is.
• 12:53
  SPEAKER_01: When you're having to have it so often, you just you're very flippant about the idea of having surgery.
• 12:58
  SPEAKER_04: Yeah, it's it's it's almost like you become institutionalized in it.
• 13:02
  SPEAKER_04: Isn't it?
• 13:02
  SPEAKER_04: Like really immune to it.
• 13:03
  SPEAKER_04: Yeah, which yeah.
• 13:05
  SPEAKER_01: And then when I see some people, like, especially on TV, for example, and they're debating, like, oh, I need to go under general anesthetic and I'm not sure and I don't want to, and you know, there's a risk that you won't wake up.
• 13:14
  SPEAKER_01: And in my head, I'm like, oh my god, I've had a general anesthetic so many times.
• 13:19
  SPEAKER_01: I love general anesthetic.
• 13:21
  SPEAKER_01: That's like the best part of the stuff.
• 13:25
  SPEAKER_01: Yeah, it's oh that feeling where you're just floating, like it's just amazing.
• 13:29
  SPEAKER_04: What do you get to count to then?
• 13:30
  SPEAKER_01: Oh, I I really try and push myself to stay awake, but I probably get to like seven.
• 13:38
  SPEAKER_04: I think I've got to three.
• 13:40
  SPEAKER_00: I can't recall.
• 13:41
  SPEAKER_00: I'm like just knocking out maybe.
• 13:42
  SPEAKER_04: Oh wow, that is impressive.
• 13:44
  SPEAKER_04: We can just start asking every guest that what's your number?
• 13:47
  SPEAKER_04: I mean, it means very different things in different situations.
• 13:51
  SPEAKER_04: What's your number?
• 13:53
  SPEAKER_04: That's a great segment.
• 13:55
  SPEAKER_00: Yeah, when you have anesthetic and counting down, just to clarify.
• 13:58
  SPEAKER_00: Just to clarify.
• 14:02
  SPEAKER_04: You've inspired that.
• 14:03
  SPEAKER_04: Thank you.
• 14:03
  SPEAKER_04: Thank you.
• 14:04
  SPEAKER_04: Never forget you.
• 14:05
  SPEAKER_04: That's amazing.
• 14:06
  SPEAKER_00: Well, one of the things that you started to talk about at the start was when you said like one word to describe you and your body at the moment.
• 14:11
  SPEAKER_00: You said it was complicated.
• 14:13
  SPEAKER_00: So how are things in terms of that like body image for yourself and like what's changed as well?
• 14:19
  SPEAKER_00: Because you've had two very different types of stoma.
• 14:21
  SPEAKER_00: So how's that been for you?
• 14:23
  SPEAKER_01: I think the reason it's complicated is because I think everybody probably has a really complicated relationship with their body.
• 14:29
  SPEAKER_01: And I think, especially as women, like the body that we have when we're in our teens and in our 20s, and then you hit your 30s, and then you know, yeah, all of a sudden, like you can't just eat what you want, and now you have to think about your protein intake and you know, fiber and you know, making healthy conscious decisions and stuff.
• 14:49
  SPEAKER_01: Um, so I think that's always gonna add to it.
• 14:52
  SPEAKER_01: But having had so many major surgeries, having stomas, like two different types of stoma bags, having like an abdomen full of scars, and I think what's kind of difficult for me is that I obviously am Muslim, so I cover up and I can't just easily show my stoma.
• 15:10
  SPEAKER_01: I can't show my scars to help empower other women.
• 15:14
  SPEAKER_01: And then also when I see other people showing their scars, it doesn't look like mine either because they have these really amazing stomachs and they like flat and really lovely scarring, and I'm like, wow, that's a beautiful scar.
• 15:28
  SPEAKER_01: That's so gorgeous.
• 15:29
  SPEAKER_04: Maybe I can get my belly out later for you if you want.
• 15:31
  SPEAKER_04: You know, don't don't worry about that.
• 15:33
  SPEAKER_01: Like they're so yeah, it's that's obviously the people who are confident enough to show their scars, often it's because they do have nice neat scarring and things like that.
• 15:44
  SPEAKER_01: And you know, they're empowering people in their own way, but for me it's different because as a Muslim I can't do that.
• 15:49
  SPEAKER_01: So I sometimes I do feel excluded from the sort of um body confidence.
• 15:54
  SPEAKER_03: Yeah.
• 15:55
  SPEAKER_03: Okay.
• 15:56
  SPEAKER_01: So from that sort of audience, I feel a bit excluded because I can't do that.
• 16:00
  SPEAKER_01: So I'm having to show it in my own way.
• 16:02
  SPEAKER_01: I think, especially as a Muslim woman, like the hidden disability is really it means more to me because it really is hidden.
• 16:09
  SPEAKER_01: Yes.
• 16:10
  SPEAKER_01: Um, for my own reasons as well.
• 16:12
  SPEAKER_01: So yeah.
• 16:13
  SPEAKER_04: And what type of questions and things are you asked in your DMs?
• 16:17
  SPEAKER_04: Because there there must be so many women in your position that are feeling the same.
• 16:21
  SPEAKER_04: And what's the the the most common things?
• 16:24
  SPEAKER_01: So I think um usually it's like um can I pray with my like how do I pray with my stoma bag?
• 16:30
  SPEAKER_01: So before prayer, you have to do like abolition where you do like your cleaning ritual, for example.
• 16:36
  SPEAKER_01: And um usually it's like when you go to the bathroom, you wash, and then you do the other parts to do the ritual.
• 16:42
  SPEAKER_01: But they're like, well, if I have a bag, my bag is constantly emptying.
• 16:47
  SPEAKER_01: So does that ritual still count?
• 16:49
  SPEAKER_01: Like, does it hold?
• 16:50
  SPEAKER_01: And I had to go and find that information out for myself initially.
• 16:53
  SPEAKER_01: So what I was told is you should pick the easier option.
• 16:57
  SPEAKER_01: So you can make a fresh, so it's called wudu, you can make a fresh wudor every time you need to pray, because we pray five times a day.
• 17:03
  SPEAKER_01: So the the one of the options is to make wad'ur every time you need to go and pray, or the easier thing to do is that count your stoma as an extension of your body.
• 17:13
  SPEAKER_01: So even though it's constantly flowing, the only time you need to make that fresh wadour is if you were to empty your bag.
• 17:19
  SPEAKER_01: So whether that's to open it to release gas, which is essentially like farting, and that's when someone would go and do make a fresh wadour as well, or if you were to empty your bag.
• 17:28
  SPEAKER_01: And because of that, like I don't empty my bag that often, maybe more now that I have an ileostomy compared to a colostomy.
• 17:34
  SPEAKER_01: So when I empty my bag, that's when I know that okay, I need to do a fresh wadour now, or if it was to like pee as normal anyway.
• 17:40
  SPEAKER_01: So um so because of that, like people have asked me questions like that, like how do I do that?
• 17:46
  SPEAKER_01: They've asked me questions about fasting, like, are you able to fast?
• 17:50
  SPEAKER_01: Like, what do you do with fasting?
• 17:51
  SPEAKER_00: Yeah, tell us tell us more about that.
• 17:53
  SPEAKER_00: Because I find I also find that very interesting as well.
• 17:55
  SPEAKER_00: Like, again, because you know, forgive my ignorance, I don't know enough about this.
• 17:58
  SPEAKER_00: And that's why I really we want to learn much more as well.
• 18:01
  SPEAKER_00: So what what would you say?
• 18:02
  SPEAKER_01: So um fasting happens once a year.
• 18:06
  SPEAKER_01: So the Islamic calendar is ten days shorter than the Gregorian calendar, and because of that, each month shifts along approximately 10 days every year.
• 18:16
  SPEAKER_01: So that's why Ramadan is going to be at different times.
• 18:19
  SPEAKER_01: So sometimes you would have noticed like a few years ago it was in the summer, now it's more sort of in the winter spring time, and then eventually it will be in the winter because it's like shifting forward every 10 days.
• 18:31
  SPEAKER_01: Um, and there's been periods when I have been able to fast.
• 18:34
  SPEAKER_01: So when the days have been shorter, it's like an eight-hour fast, which is just like waking up late, skipping breakfast, and then you can just open your fast at four o'clock, for example.
• 18:46
  SPEAKER_01: So those days it's really easy.
• 18:48
  SPEAKER_01: Um, and then there's periods where it's like probably a 16, 17 hour fast, so it's like the summer months.
• 18:54
  SPEAKER_03: That's a massive and it's really hard, yeah.
• 18:56
  SPEAKER_01: And I so fasting is essential for Muslims, it's like one of the pillars, but not just that, like it's such a spiritual point in time.
• 19:08
  SPEAKER_01: Like the the sense of community you have when you're fasting, like everybody going to the mosque, it's like a real community event as well, because you go around to each other's houses, you open your fast together, you know, you're spending a lot in charity, you're trying to do the best that you can do and being the best version of yourself.
• 19:25
  SPEAKER_01: So it's a really important month for Muslims, and when you can't fast, which is like the integral part of it, like you do feel the loss of that, and I've definitely felt that as well.
• 19:35
  SPEAKER_01: But I'm also really sensible in the sense that I will listen to the doctor's advice, I won't just go against it for my own wishes because essentially I know that it can make me worse.
• 19:46
  SPEAKER_01: So previously, what I've done is I've done like on and off.
• 19:50
  SPEAKER_01: So I'll fast one day, take a day off, fast the other day, or maybe I'll fast two days in a row, take one day off, see how I feel.
• 19:57
  SPEAKER_01: So I'm really like in tune with my body and I'll listen to it because I I just think that like, yeah, fasting is one of the pillars and it's important for you to do, but God also makes exemptions for people who are unwell.
• 20:10
  SPEAKER_01: It's not there to make you more sick, and he understands and he knows our struggle and he knows how much harder it is.
• 20:17
  SPEAKER_01: So you get rewarded just for your struggle for just being unwell in itself, and and that's huge.
• 20:23
  SPEAKER_01: So we need to remember those kinds of things as well.
• 20:25
  SPEAKER_01: Like he he gives us an ex not the an excuse, but he tells us not to fast if we're unwell, we're exempt from it.
• 20:33
  SPEAKER_01: So I think a lot of people sort of kind of miss that out or don't really consider that.
• 20:37
  SPEAKER_01: They just think that no, I have to push myself.
• 20:39
  SPEAKER_01: But if you push yourself and it makes you more unwell, what's the point?
• 20:42
  SPEAKER_01: You're then not able to complete your prayers on time, you're not able to do all the extra stuff that you could do instead.
• 20:49
  SPEAKER_01: So that's what I kind of encourage people to do.
• 20:51
  SPEAKER_01: Like, you know, see, take it slow, see if you can.
• 20:54
  SPEAKER_01: If you can't manage, then there's other things you can do instead.
• 20:57
  SPEAKER_01: You know, you can help make food, you can, you know, donate food, you can help out in community events, you can like we have the evening prayer, and then we have an extra one at night, so you can go and volunteer at your mosque.
• 21:09
  SPEAKER_01: Like, there's so many other things you can do.
• 21:11
  SPEAKER_01: You can just listen to podcasts, you can do like read books, Islamic books if you want to, you can watch YouTube videos.
• 21:18
  SPEAKER_01: There's so much you can do, you know.
• 21:19
  SPEAKER_01: Um, and you shouldn't feel bad about it, because like as I mentioned, one of the myths that I wanted to talk about as well is that IBD and um stoma, it's not your fault that you have it.
• 21:30
  SPEAKER_01: 100%.
• 21:30
  SPEAKER_01: And a lot of people do blame themselves, and it's like, oh, it's because I used to eat like this, or maybe I used to do this, and I used to, oh, because I was stressed.
• 21:38
  SPEAKER_01: It's not your fault.
• 21:40
  SPEAKER_01: Um, so I think we always need to just remind ourselves of that.
• 21:44
  SPEAKER_01: And um, so yeah, those are the kind of things that people ask me.
• 21:47
  SPEAKER_01: They've even asked me, like, oh, how do you dress like for Eid and stuff?
• 21:50
  SPEAKER_01: Like, have you worn a sari before?
• 21:52
  SPEAKER_01: And because obviously it's about your abdomen and you know, can you wear these kind of clothing?
• 21:57
  SPEAKER_01: And I'm like, Yeah, you can.
• 21:58
  SPEAKER_01: Like, um Just wear what you feel good in and what you're comfortable in.
• 22:04
  SPEAKER_00: Can I ask?
• 22:04
  SPEAKER_00: Like, obviously navigating this space must be really difficult.
• 22:08
  SPEAKER_00: Like, how did you sort of find did you have a good support network that helped you go right, this is this is what you can do, this is what you can't do?
• 22:16
  SPEAKER_00: Because I'm wondering like if there's any other advice we can give people that maybe don't have that support network that are in your situation?
• 22:21
  SPEAKER_01: Yeah, um to be honest, I I just kind of figured it out as I was going along.
• 22:25
  SPEAKER_01: Like I do have a great support network in terms of my I've got sisters, I've got four amazing sisters, and we're all really close.
• 22:31
  SPEAKER_01: And I'm like second youngest.
• 22:33
  SPEAKER_01: So I've got three older sisters, one younger sister, and they've always been really supportive.
• 22:39
  SPEAKER_01: My parents, they're amazing, really supportive.
• 22:42
  SPEAKER_01: But again, this was really new for them.
• 22:44
  SPEAKER_01: They didn't they'd never heard of a stoma before.
• 22:46
  SPEAKER_01: I'd never heard of a stoma before I was given one.
• 22:49
  SPEAKER_01: So it's been a learning experience for them, but they've also always been really supportive of it as much as they can understand and do what they need to do, you know.
• 23:00
  SPEAKER_01: So I think because I have that, it gives me the confidence to speak out and not feel embarrassed or ashamed because you know, you are essentially talking about your bowel movements.
• 23:10
  SPEAKER_01: It's embarrassing for a lot of people who want to talk about farting and pooping in general, and you know, so um I think they're the ones who've given me that confidence, and then I've had great friends as well who've always been really supportive.
• 23:21
  SPEAKER_01: I've I've not had any friendship breakups over my yeah, like yeah, and I've got friends from like secondary school that I'm still really close with.
• 23:32
  SPEAKER_02: Absolutely.
• 23:33
  SPEAKER_01: So friends from like school, college, university, um, and then I didn't really have work friends because I didn't really get to work properly, but you know, I've kept in touch with a lot of my friends, and I think it's just I guess I've just picked really good friends throughout my life.
• 23:49
  SPEAKER_04: And I suppose if you if you think of generations that have come before you in your culture, I just wonder how they navigated all this because you've got a very fresh, modern approach to things, and you're giving people, you know, that space to be do what is right for you, do what feels best.
• 24:08
  SPEAKER_03: Yeah.
• 24:08
  SPEAKER_04: And I wonder, would that have been the approach in generations that came before you?
• 24:13
  SPEAKER_01: I think because my family's from Kashmir and it's a really small, remote village.
• 24:18
  SPEAKER_01: So I think only recently my mum told me that someone from the village actually has a stoma bag now, and I haven't been back in like five years.
• 24:28
  SPEAKER_01: So I really want to go back and then I want to speak to this person and just see how they are and how they're getting on and stuff.
• 24:34
  SPEAKER_01: Um, but it's really unheard of.
• 24:36
  SPEAKER_01: Like people don't know about what stomas are, and I think things like IBD or other reasons why you may have a stoma, um, like those are becoming more prevalent now.
• 24:48
  SPEAKER_01: But back then, like maybe people had issues like that, but they didn't really have access to stoma bags.
• 24:55
  SPEAKER_04: Yes, and would they have gone to the doctors gone to show themselves and say I'm struggling?
• 25:01
  SPEAKER_01: And in the village, like our closest hospital is like an hour and a half away.
• 25:07
  SPEAKER_01: Now, like more are starting to open up and you're getting clinics and things, but you know, if you needed major surgery back then, I I don't think you'd even have gotten a stoma.
• 25:17
  SPEAKER_00: Yeah, so well I guess there might also have been like maybe cultural pressures as well.
• 25:21
  SPEAKER_00: So don't talk about that or you shouldn't be doing those sorts of things.
• 25:24
  SPEAKER_01: When I first um had my perforation and I was high on morphine, and they would come in and check on me.
• 25:32
  SPEAKER_01: And at the time they weren't 100% sure what was going on.
• 25:35
  SPEAKER_01: They just said that you've got air in your abdomen and they were just monitoring my bloods.
• 25:40
  SPEAKER_01: And when my CRP went above 400, that's when they were like, Okay, you need surgery.
• 25:47
  SPEAKER_01: And I remember a stoma nurse coming in and saying to me, like, okay, where do you want to have your stoma bag?
• 25:51
  SPEAKER_01: And I was like, What are you talking about?
• 25:53
  SPEAKER_01: And she was like, Uh, there's a possibility you might need a stoma, like, where do you want it?
• 25:57
  SPEAKER_02: Yeah.
• 25:58
  SPEAKER_01: And I was like, I don't know what that is.
• 26:01
  SPEAKER_01: I don't want it.
• 26:01
  SPEAKER_01: I don't want to talk about it.
• 26:03
  SPEAKER_01: And in my head, I just thought, like, if I accept it, that means I'm gonna get one.
• 26:07
  SPEAKER_01: So if I'm just like adamant that I'm not having one, then I won't need surgery.
• 26:11
  SPEAKER_01: So I was just like, no, I don't want to talk about it.
• 26:13
  SPEAKER_01: I'm not gonna get the surgery.
• 26:14
  SPEAKER_01: And then when they'd come in to check on me like every day, because I was sort of like that for about four or five days where they were just monitoring me, um, my dad would say, like, say you're feeling better now because you don't want surgery.
• 26:25
  SPEAKER_01: And they'd come in like, hey, how are you doing now?
• 26:27
  SPEAKER_01: And I'll be like, Yeah, I feel so much better, like the pain is so much better now.
• 26:31
  SPEAKER_01: And they're like, Oh, great, great.
• 26:32
  SPEAKER_01: But because they were still monitoring my bloods, and then when my CRP went above 400, they were like, No, we need to do surgery.
• 26:38
  SPEAKER_00: So, what helps then you maybe say, Right, that's it, I've got to have this now.
• 26:43
  SPEAKER_00: And then Yeah.
• 26:44
  SPEAKER_01: Well, I think because I didn't have a choice in the matter, I didn't really have time to make a decision about it.
• 26:51
  SPEAKER_01: But later on, when I needed a procductectomy, that was almost like a choice, but kind of not.
• 26:57
  SPEAKER_01: I was really unwell.
• 26:58
  SPEAKER_01: I just wasn't getting better with medication.
• 27:01
  SPEAKER_01: I'd tried a few at that point, and I think because of a lot of my inflammation was in the sort of rectal area, I just needed that surgery.
• 27:10
  SPEAKER_01: Yeah, and I wasn't living a I my the quality of life was really bad.
• 27:16
  SPEAKER_01: Like I remember just waking up, falling asleep on the sofa, being on the sofa asleep all day long, and then just going up to my bed.
• 27:23
  SPEAKER_01: My mum was constantly trying to feed me because as an Asian mum, like food is her love language.
• 27:27
  SPEAKER_01: Yeah, so that was the only thing she had control over, so that's what she was doing.
• 27:31
  SPEAKER_01: She was constantly trying to feed me like smoothies and fruit and just have a little bit of this and a little bit of this, and I was just in a constant temperature.
• 27:39
  SPEAKER_01: Um, and then once I had the surgery, I was in hospital for about a month and I couldn't have like the plastic surgery to have the Barbie butt and stuff because there was just the quality of the skin was just so bad because you know I had necrosis and everything, so they had to leave that open and let it heal sort of naturally.
• 27:58
  SPEAKER_01: So, because of that, I still had like a nurse coming home and doing the packing and all of that.
• 28:03
  SPEAKER_01: But after that whole ordeal, I was so much better in myself that that's the point where my mum was just like, You should have had this surgery years ago.
• 28:12
  SPEAKER_01: Like, I don't know why I was so afraid of it because now you're so much better.
• 28:16
  SPEAKER_01: And if I had known that, then I would have encouraged you to have it sooner.
• 28:21
  SPEAKER_01: And and that's what it kind of comes down to because no one is talking about it, no one can say to you, or no one is saying to you that your life will improve once you have surgery and once you have a stoma.
• 28:33
  SPEAKER_01: Like I remember even before the perforation, I lost so much weight because I was malnourished, I wasn't able to eat.
• 28:42
  SPEAKER_01: Like, I I took a bite of a cube of cheese, and I remember it affecting me so much.
• 28:47
  SPEAKER_01: And then once I'd had the surgery, and I love cheese, guys.
• 28:51
  SPEAKER_01: Um I'm not lactose intolerant either.
• 28:53
  SPEAKER_01: I'm a basic girl.
• 28:55
  SPEAKER_01: I love him cheddar.
• 28:56
  SPEAKER_01: I love a cheddar.
• 28:57
  SPEAKER_01: I don't have nothing wrong with cheddar, but I love hiloumi, I love mozzarella, you know.
• 29:00
  SPEAKER_01: Um we're gonna get in a bit, like, but because of that, like um, I can now eat like cheese toasties again, I could have pizza and you know, and it was amazing.
• 29:11
  SPEAKER_01: And I was just like, why was I so afraid of this when my life is so much better?
• 29:16
  SPEAKER_01: Exactly.
• 29:17
  SPEAKER_01: And I didn't know where to look for this information either.
• 29:19
  SPEAKER_01: I didn't have anyone saying to me that, you know, it is difficult adjusting to you having a stoma, but it it will still be life will still be worth living afterwards.
• 29:29
  SPEAKER_01: Like you'll realize how much your life has improved now that you have a stoma.
• 29:34
  SPEAKER_01: So I'm I'm always gonna advocate for people to do what's right and best for them, but don't I don't want people to be scared of having a stoma just because they're worried about societal expectations and you know you know what culture and things like that.
• 29:50
  SPEAKER_01: Like those things don't matter.
• 29:51
  SPEAKER_01: Like your life is yours to live.
• 29:53
  SPEAKER_01: No one can live it for you.
• 29:54
  SPEAKER_01: So you need to do what's best for you.
• 29:56
  SPEAKER_00: It's a really empowering message.
• 29:58
  SPEAKER_01: Yeah.
• 29:58
  SPEAKER_01: I love that.
• 29:59
  SPEAKER_04: You saying that you're you were concerned that you couldn't show your scars, show your stoma to give people what just what you're saying is just above and beyond.
• 30:08
  SPEAKER_04: So please don't s think that you're not making an impact because you you are.
• 30:12
  SPEAKER_04: And I really hope this podcast gets to the people that need to hear it.
• 30:16
  SPEAKER_04: I hope so.
• 30:16
  SPEAKER_00: It's just it it's just incredible.
• 30:18
  SPEAKER_00: There's one thing I was gonna ask was around like have you seen a notice or a shift in not perception now, but is there more people that are coming forward like to show their share their stories, show bags and stuff like that that you're now seeing on social media to what it was before?
• 30:34
  SPEAKER_01: Yeah, definitely.
• 30:35
  SPEAKER_01: I think there's an organization called SIA, which before used to stand for South Asian IBD Alliance.
• 30:40
  SPEAKER_00: I know this.
• 30:41
  SPEAKER_00: I know SIA, yes.
• 30:43
  SPEAKER_01: And then now they've shifted to um Strategic Alliance for Intercultural Advocacy.
• 30:48
  SPEAKER_01: So they've kind of broadened the scope of the work that they're doing, but they are doing they are doing amazing work at the moment, and they are sort of getting patient advocates from all different cultures to speak up about their experiences.
• 31:03
  SPEAKER_01: They deal like they include doctors in these conversations so that doctors can go on and have more culturally sensitive conversations with their patients, and you know, like um they're organizing events at like Digestive Disease Week, which happens over in the US every year, and they're doing really, really amazing work.
• 31:21
  SPEAKER_01: They've published papers, so they work with clinicians and pharmaceutical companies, and it's like they're doing the behind the scenes work, which was really, really important just as much as sort of the the influencer work that you're doing, you know, to um on the surface where you're sort of just showing how you can you're just showing your life as a normal person, to be honest.
• 31:41
  SPEAKER_01: And that is that can be inspiring in itself because for someone who's newly had a stoma, and I've had people ask me questions and stuff like how is it with your stoma, and are you able to do this and that?
• 31:52
  SPEAKER_01: And just showing that you're living a normal life, um, I hope is empowering for people too to show that that can be them later on once you know they're healed and they're healthy and they're yeah.
• 32:04
  SPEAKER_04: What I wanted to ask you about was your book club.
• 32:07
  SPEAKER_04: Yes.
• 32:08
  SPEAKER_04: So tell us all about it.
• 32:09
  SPEAKER_04: It's in your bio.
• 32:10
  SPEAKER_04: Yeah, people will easily find it.
• 32:12
  SPEAKER_04: Tell us all about it.
• 32:13
  SPEAKER_01: So my book club, um, it started as just almost like a passion project with me and my friends.
• 32:19
  SPEAKER_01: So it's with my friends and my younger sister.
• 32:23
  SPEAKER_01: So my friend from uni, Linda, she sort of got us together in a group chat and was just like, you guys are all my friends, you all love reading books.
• 32:31
  SPEAKER_01: You know, why don't we make a space on the internet?
• 32:33
  SPEAKER_01: That's just like reviewing books.
• 32:35
  SPEAKER_01: You know, I'm tired of seeing selfies and makeup and you know, let's talk about books.
• 32:41
  SPEAKER_01: And we're like, okay, great.
• 32:42
  SPEAKER_01: And it started off as just read whatever you want, there's no pressure.
• 32:46
  SPEAKER_01: Everyone kind of enjoys different genres and different things, and you know, just we'll just review it.
• 32:51
  SPEAKER_01: We'll give it a rating out of five.
• 32:52
  SPEAKER_01: And that's sort of how it started.
• 32:54
  SPEAKER_01: And we've been going for it'll be 10 years this year.
• 32:56
  SPEAKER_01: 10 years in September.
• 32:58
  SPEAKER_04: Are you celebrating?
• 33:00
  SPEAKER_01: Yes, I hope so.
• 33:01
  SPEAKER_01: So um, we haven't organized anything properly.
• 33:05
  SPEAKER_01: We really need to sit down and do it because everyone has a normal job, like they're this is something we do on the side, so because of that, like everyone, like life just gets busy sometimes.
• 33:16
  SPEAKER_01: But we need to definitely celebrate, and I think we let the very least we'll be on holiday together, us gals.
• 33:22
  SPEAKER_01: Um, but that's been that's been amazing because that's definitely got me through some difficult times because I've always loved reading growing up as a child, but I think as you go into adulthood, like life gets busier and you don't always make time for things like that, which is just literally just a hobby.
• 33:39
  SPEAKER_01: You you're not making money from it, you're not doing it to progress your career or anything.
• 33:44
  SPEAKER_01: Like we really advocate for fictional reading.
• 33:47
  SPEAKER_01: Like, non-fiction is great as well, but with fiction, I think you can learn so much from it.
• 33:52
  SPEAKER_01: Whereas people really underestimate the power of fiction, they think, you know, especially men, um, they just think like they have to read non-fiction only because, you know, if I'm gonna spend my time or a few hours reading, then it has to be facts that I'm gonna learn from and it's gonna make me more money or you know, whatever.
• 34:08
  SPEAKER_01: But I just think there's so much to learn from fiction, you know, it teaches you empathy, it teaches you about the world.
• 34:14
  SPEAKER_01: You know, even though these stories are not true, they're still based on truth and experiences, and we love that.
• 34:22
  SPEAKER_01: So yeah.
• 34:24
  SPEAKER_00: It's really resonating with me because I've literally picked up the reading mantle for the first time properly this year.
• 34:29
  SPEAKER_04: Fiction or non-fiction?
• 34:30
  SPEAKER_04: Fiction.
• 34:31
  SPEAKER_00: Fiction, yeah, yeah, yeah.
• 34:32
  SPEAKER_00: There you go.
• 34:33
  SPEAKER_00: And I've got um, I'm going through oh gosh, I can't remember the author, but she is an incredible author that actually focuses mainly on like female protagonists through like war events and things like that.
• 34:42
  SPEAKER_00: Oh, amazing.
• 34:43
  SPEAKER_00: It's unreal.
• 34:43
  SPEAKER_00: I will the book's in my bag, I'll tell you what it is.
• 34:45
  SPEAKER_00: It's called um I've read The Home Front and it's gonna be made into a film.
• 34:51
  SPEAKER_00: I'll find it later.
• 34:52
  SPEAKER_00: Okay, but definitely genuinely completely agree with all your points.
• 34:55
  SPEAKER_00: Rather than I was like, I don't know about you if you like reading or not, but I'd pick up a book just because I was going on holiday.
• 35:01
  SPEAKER_00: Yeah.
• 35:01
  SPEAKER_00: Stand at the airport and be like, that'll do.
• 35:03
  SPEAKER_00: Read that, right?
• 35:04
  SPEAKER_00: Put it back down.
• 35:05
  SPEAKER_00: Don't pick it up then for six months.
• 35:06
  SPEAKER_00: So what's been like a really inspirational book for you?
• 35:09
  SPEAKER_01: Um, so at the time I um a few years ago, I lost a really close friend of mine, and I also had um major surgery at the time as well, and I was in hospital for two months.
• 35:22
  SPEAKER_01: So I think that really compounded the grief.
• 35:25
  SPEAKER_01: Um, and then I read a book called The Manual for Heartache um by Kathy Rensenbrink, and it was about uh when she lost her brother and her process of grief, and I found that really, really powerful at the time, and I think grief is such a difficult topic to talk about.
• 35:43
  SPEAKER_01: Um, so I definitely recommend that for anyone who's lost someone who meant a lot to them.
• 35:49
  SPEAKER_01: Um, because it's something that you'll carry with you for the rest of your life.
• 35:52
  SPEAKER_01: So um I definitely recommend that.
• 35:55
  SPEAKER_01: But there's been so many great, great books.
• 35:57
  SPEAKER_01: That's a non-fiction recommendation, but um, there's so many great books that I've read.
• 36:02
  SPEAKER_01: I I couldn't even tell you at the top off the top of my head.
• 36:04
  SPEAKER_02: What are you reading now?
• 36:06
  SPEAKER_01: Um I'm reading, I just finished Kin, which was by uh Teyari Jones.
• 36:11
  SPEAKER_01: So we had an event with her, she came over from the US.
• 36:13
  SPEAKER_01: Wow, yeah, so we have authors come over.
• 36:16
  SPEAKER_01: Yeah, we have authors.
• 36:17
  SPEAKER_01: Um our next event is with Zulfa, who's coming over from um, I think Switzerland.
• 36:26
  SPEAKER_01: Um so we're doing her launch event, and then after that, I'm not sure actually.
• 36:31
  SPEAKER_01: My TBR is forever growing, so just need to pick something on there that's probably been on there for ages.
• 36:38
  SPEAKER_04: It's so lovely that you've had that focus as well.
• 36:40
  SPEAKER_04: Because I think when you've got a chronic it on this and when you can't have the nine to five job, yeah, you really need something to give your energy to and focus on that's not to do with being poorly.
• 36:51
  SPEAKER_04: Exactly.
• 36:51
  SPEAKER_00: And it gives you that escapism as well, right?
• 36:53
  SPEAKER_00: Like it's someone else, it's it's you know, fantasy and like you can get so engrossed in it.
• 36:58
  SPEAKER_01: And and I've always loved watching TV shows and movies.
• 37:02
  SPEAKER_01: So on those days where you don't have a lot of energy, that's my go-to.
• 37:06
  SPEAKER_01: I have a few comfort shows which I watch, which is like one of them is New Girl.
• 37:10
  SPEAKER_01: I love that show, I think it's so funny.
• 37:12
  SPEAKER_01: Yeah, it's it's not even a guilty pleasure.
• 37:14
  SPEAKER_01: I just I'm loud and proud about it, but you know, it's just one of those comfort things that you can just put on and you enjoy every time.
• 37:20
  SPEAKER_01: And then when I have a bit more brain power, I'll watch something like maybe Severance or something or shoguned or something that takes a little bit more mental energy, and then other times I can just sit in bed and read a book, and then I'll read things that are like um a romance book, which I know that will make me feel good, and it doesn't take a lot of energy for me to absorb what I'm reading, and then other times I'll read something a bit bigger, which is like maybe historical or um something like based in another country where you kind of have to focus a little bit more.
• 37:51
  SPEAKER_01: So I just I I adjust according to like my energy levels and how I'm feeling each day.
• 37:56
  SPEAKER_01: And you know, I've read while I was in hospital as well, so you know, yeah, you just have to have other things in place so that you can just every day you can just adjust according to how you feel, and that way you're still enjoying life the way like in in any way that you can really.
• 38:14
  SPEAKER_04: Yeah, finding the joy, isn't it?
• 38:16
  SPEAKER_04: Trying to find something you get a pleasure out of that's not reminding you of the rubbish types, yeah, definitely.
• 38:22
  SPEAKER_01: And I think books and movies and shows and stuff, it's like perfect escapism.
• 38:26
  SPEAKER_01: Yeah.
• 38:27
  SPEAKER_01: Yeah.
• 38:27
  SPEAKER_04: Okay, I got a question for you.
• 38:29
  SPEAKER_04: Yeah.
• 38:30
  SPEAKER_04: What are your thoughts about reading a book on a screen?
• 38:34
  SPEAKER_04: I am all for it.
• 38:36
  SPEAKER_01: Oh yeah.
• 38:38
  SPEAKER_01: So although I am a purist, I love a book.
• 38:41
  SPEAKER_01: I don't have a Kindle, I don't have a Kobo or anything like that.
• 38:44
  SPEAKER_01: So I do like a physical book.
• 38:46
  SPEAKER_01: But if you prefer to listen to audiobooks, I'm still I'd still classify that as reading because you're still using your brain and concentrating and you're still absorbing what you need to.
• 38:56
  SPEAKER_01: And then sometimes when I'm on real low energy days, I listen to the audiobook while I'm reading.
• 39:01
  SPEAKER_01: So it's almost like someone's reading it to me.
• 39:04
  SPEAKER_01: And I find that that's that makes it easier for me to actually absorb.
• 39:07
  SPEAKER_01: So I'm not doing the energy of actually reading, I'm just listening, but I'm following along.
• 39:13
  SPEAKER_04: That's fantastic.
• 39:14
  SPEAKER_04: You know, like if you're in hospital or you're having a procedure or whatever, I know I in the past I've brought books and I just can't bring myself to read.
• 39:22
  SPEAKER_04: Yeah.
• 39:23
  SPEAKER_04: I haven't got the mental energy.
• 39:25
  SPEAKER_04: That is such a great tip.
• 39:26
  SPEAKER_04: I never would have thought of doing that.
• 39:28
  SPEAKER_01: Because yeah, sometimes you don't have the energy to read.
• 39:32
  SPEAKER_01: And if I'm just listening to an audiobook, I tune out because I'm always thinking about a million and one things.
• 39:39
  SPEAKER_01: So then having the book there to read while I'm listening to it helps me concentrate on the words without the effort of it.
• 39:47
  SPEAKER_01: So yeah.
• 39:48
  SPEAKER_00: Do you find when you have an audiobook, if the person reading the narration isn't quite right, does it put you off the book entirely?
• 39:54
  SPEAKER_01: It does.
• 39:55
  SPEAKER_01: It has.
• 39:56
  SPEAKER_01: So there was this one book I won't mention.
• 39:58
  SPEAKER_01: The book I'll tell you afterwards.
• 40:00
  SPEAKER_01: But the the person who was doing the audiobook, they were doing like the different accents and stuff according to the different characters, and it just kept throwing me off and taking me out.
• 40:10
  SPEAKER_01: And initially, I tried to read the book, I was struggling, so I thought, okay, let me do audiobook.
• 40:15
  SPEAKER_01: And then that was really just throwing me off.
• 40:17
  SPEAKER_01: And then by that point, I was kind of halfway through, and then I went back to reading the book and I enjoyed it so much more.
• 40:22
  SPEAKER_01: So it does make a difference.
• 40:23
  SPEAKER_01: But generally, um the audiobook is good.
• 40:27
  SPEAKER_01: I is there's only been one occasion where I didn't like the narrator, but apart from that, like the narration, like the narrator is normally really good.
• 40:34
  SPEAKER_00: Yeah, it's got to have a soothing voice.
• 40:36
  SPEAKER_00: It's like Stephen Fry or something like that.
• 40:37
  SPEAKER_04: I mean, there are other people who do narrating as well, but so one question that a lot of followers will be wanting us to ask you is about clothing and how you dress, especially how you navigated that with two stoma bags.
• 40:52
  SPEAKER_04: And how, you know, for someone that's struggling with that in your culture, how would you how would you say they could approach it?
• 40:58
  SPEAKER_01: I think the number one thing is to feel comfortable in what you're wearing.
• 41:03
  SPEAKER_01: So I think I've always been quite tomboyish growing up.
• 41:06
  SPEAKER_01: So I used to wear a lot of like baggy clothes and stuff, and then once I had two bags, I found that that really helped.
• 41:15
  SPEAKER_01: But then as I started to get a bit older, I felt like I had a bit of a style crisis at some point.
• 41:20
  SPEAKER_01: I was just like, when it comes to wearing cultural clothing for like celebrations and stuff, um I had to figure out what works best for me, but also my body shape as well.
• 41:32
  SPEAKER_01: Now I'm quite petite, I'm like five foot one, and then I'm quite top heavy as well.
• 41:38
  SPEAKER_01: So I can't just I have to I've always had to think about what I wear and what suits my body shape.
• 41:44
  SPEAKER_01: And then having a stoma on top of that, like I always make sure that I maybe go tighter on the top and then it skims out at the bottom, so like A-line stuff works really well.
• 41:52
  SPEAKER_01: I wear jacket clothing for like Asian wear, so it kind of flares at the at the abdomen and stuff at the midriff.
• 42:02
  SPEAKER_01: So things like that I wear high-waisted, which really helps.
• 42:05
  SPEAKER_01: So they are a lot, there is a lot of options, and I think with fashion, it's always changing, there's always like new trends and stuff.
• 42:11
  SPEAKER_01: So you just adapt to like what feels good for you.
• 42:14
  SPEAKER_01: Like with Asian wear, for example, saris will never be out of style, sevak means will always be in fashion.
• 42:21
  SPEAKER_01: So because of that, like you know, if something works for you, you can just stick with it.
• 42:27
  SPEAKER_01: And with when it comes to a sari, all you have to really update is really like the type of embroidery that's on it, the colours, the things like that, whereas the actual shape always stays the same.
• 42:37
  SPEAKER_01: So I think that really helps.
• 42:38
  SPEAKER_01: Like I make my petticoat that I wear really high-waisted so it goes over my stoma bag.
• 42:43
  SPEAKER_01: So then when I wrap the sari and I tuck it in, like it doesn't interfere and I can still easily change my bag if I need to, and things like that.
• 42:51
  SPEAKER_01: Yeah, but on the days where I've been really conscious about like my output, what I'll do is just make sure I'm not having like high fibre foods maybe a few days beforehand to reduce like the bulk in my output, and then also take like an emodium to slow down your output too.
• 43:08
  SPEAKER_01: If so, there are ways around it for like special occasions, but I wouldn't do that on a regular basis.
• 43:13
  SPEAKER_01: Um, but yeah, if you do have an important event that you're worried about, then those are the kind of tips I'd give.
• 43:18
  SPEAKER_01: Yeah.
• 43:18
  SPEAKER_00: Do you have any like colours or particular garments you're like that gives you real confidence when I wear it?
• 43:23
  SPEAKER_00: So you put it on, you're like, mate, I feel fantastic.
• 43:26
  SPEAKER_01: Recently I've realized that I really enjoy wearing red.
• 43:29
  SPEAKER_01: Nice.
• 43:29
  SPEAKER_01: And red is a really traditional colour that you wear like on your wedding day.
• 43:33
  SPEAKER_01: Um so I kind of always associated it with that, but I think I must have worn like a red cardigan recently, and I realized that I I really liked how I looked in it.
• 43:42
  SPEAKER_01: And red is such a power colour.
• 43:45
  SPEAKER_01: Yeah, and I was like, why do we always reserve this for like an occasion?
• 43:49
  SPEAKER_01: Why can't why don't we just wear it a bit more casually?
• 43:53
  SPEAKER_01: Um so yeah, I'm trying to incorporate a bit more colour.
• 43:55
  SPEAKER_01: Like I love black, I'm almost always in black, and my friends always laugh about.
• 44:00
  SPEAKER_01: The fact that I'm always in black.
• 44:02
  SPEAKER_01: But that again, it just makes me feel good.
• 44:04
  SPEAKER_01: I feel confident when I wear black.
• 44:06
  SPEAKER_01: I've always I've always worn black, but now I'm trying to incorporate a bit more colour and you know, just figuring out what suits me.
• 44:14
  SPEAKER_01: And like again, I'm in my late 30s and I'm still figuring out what suits me and what looks good and stuff.
• 44:20
  SPEAKER_01: So and it always changed with time anyway.
• 44:22
  SPEAKER_01: So I don't I think we need to let go of these preconceived notions that we can only dress in one type of way and you know, um, yeah, just figure out what works for you.
• 44:31
  SPEAKER_00: I have to be honest, even with polka dots, polka dots are on trend at the moment.
• 44:34
  SPEAKER_00: There you go.
• 44:34
  SPEAKER_00: I only know that because my wife's like telling me this and showing me all the outfits she's buying.
• 44:39
  SPEAKER_00: Well, we got all of that.
• 44:40
  SPEAKER_00: I need to get all the polka dots.
• 44:41
  SPEAKER_00: I've got uh yeah, sure.
• 44:43
  SPEAKER_00: Fabulous, fabulous.
• 44:44
  SPEAKER_00: And I read all being season this season as well.
• 44:46
  SPEAKER_00: So yeah, it's all good.
• 44:47
  SPEAKER_01: I don't um because I do try to not do overconsumption and stuff like that.
• 44:52
  SPEAKER_01: So I try not to follow trends in that respect.
• 44:54
  SPEAKER_01: And I think things like if buy if you buy good quality clothes or like natural fibres and stuff, you know that stuff will last you as well.
• 45:01
  SPEAKER_01: And because you're not following the trend cycles, again, you don't have to worry so much.
• 45:04
  SPEAKER_01: So if you find a piece that you love, it's something that you can always wear and it it will you know that it will always make you feel good.
• 45:11
  SPEAKER_01: And then you like if there's a particular style that you like, then look for those things when you're going shopping and stuff.
• 45:17
  SPEAKER_01: Because it's it's just about wearing what makes you feel good, essentially.
• 45:20
  SPEAKER_01: So true.
• 45:21
  SPEAKER_00: Yeah, so true.
• 45:22
  SPEAKER_00: And all like fashion just goes in cycles anyway.
• 45:24
  SPEAKER_00: Like half the stuff either is like will be baggy or stuff, and then next year it'll be yeah.
• 45:28
  SPEAKER_00: Do you remember when like skinny jeans are in?
• 45:30
  SPEAKER_00: Do you remember when all that was happening?
• 45:31
  SPEAKER_00: Oh, I just try to avoid all that.
• 45:33
  SPEAKER_04: I can't keep up.
• 45:34
  SPEAKER_04: It's too, it's changes too much.
• 45:36
  SPEAKER_01: I was wearing skinny jeans, and I was like, oh my god, now the thought of high-waisted skinny jeans, oh my stoma.
• 45:43
  SPEAKER_04: I was like, oh, that sounds like hell.
• 45:44
  SPEAKER_04: No, no.
• 45:45
  SPEAKER_04: Yeah.
• 45:46
  SPEAKER_04: We um we asked you to bring a photo in that meant something to you.
• 45:50
  SPEAKER_04: So can you share that with us?
• 45:52
  SPEAKER_04: Yes, of course.
• 45:54
  SPEAKER_01: So this is my picture.
• 45:56
  SPEAKER_00: Wearing red, love it.
• 45:59
  SPEAKER_01: Is that on purpose?
• 46:01
  SPEAKER_01: This is when I realized that, oh, I enjoy wearing red, actually.
• 46:04
  SPEAKER_00: So what's happening in this in this?
• 46:06
  SPEAKER_01: So this um was this year in um the beginning of May.
• 46:12
  SPEAKER_01: So I was invited to Chicago um by Saya to attend their event um that was a round table to discuss with pharmaceutical companies and healthcare professionals and clinicians about my experiences um with just IBD really.
• 46:32
  SPEAKER_01: Um, and what I particularly spoke about is like um sex uh in IBD, and like that's something that people don't really talk about.
• 46:42
  SPEAKER_01: And I think especially as a Muslim or um anyone who maybe doesn't practice sex before marriage, I think that can be quite a daunting experience.
• 46:51
  SPEAKER_01: Um so it was just about talking about that really and how that conversation went when I discussed it with my doctor and what they could do better and things like that, because I think the advice at the time that I was given was like go and have sex and find out.
• 47:05
  SPEAKER_01: Um, because I wasn't sure if I could.
• 47:08
  SPEAKER_01: That was the advice.
• 47:09
  SPEAKER_01: That was the advice, and I was like, okay, great.
• 47:12
  SPEAKER_01: Um, so what would you like to like?
• 47:15
  SPEAKER_00: Obviously, you know, you've you've you've gone there to discuss those points, like what would you want doctors to be having as a conversation with you?
• 47:21
  SPEAKER_01: So I think the reason why it was a worry of mine was because I also had um fishalizing Crohn's as well, and I had genital Crohn's.
• 47:30
  SPEAKER_01: So because it was something that affected that area of my body, I wasn't sure whether or not I could have sex, for example.
• 47:38
  SPEAKER_01: And when I was thinking about relationships and I didn't know where to go to ask that question.
• 47:43
  SPEAKER_01: So naturally, my first point of call was my um my doctor, and then that was the sort of advice I was given, and naturally it wasn't very helpful advice.
• 47:51
  SPEAKER_01: I know, and I think what I would have wanted was just you know, everybody's different.
• 47:57
  SPEAKER_01: You can't 100% say that yes, you can, no, you can't.
• 48:00
  SPEAKER_01: But I think what would have been nice at the time was for just someone to be a bit reassuring to say, I don't know for sure, but people in a similar position to you are able to have normal, healthy sex life, and um, you know, we hope that that will be the same case for you.
• 48:16
  SPEAKER_01: And then once you do experience that, and if that's not the case, then please come back and then maybe we'll be able to help you.
• 48:22
  SPEAKER_01: But you know, until you don't try, you won't know yourself.
• 48:27
  SPEAKER_01: And I think that that just simply that, and even if it even if it was a oh, I'm not sure, but here's how I can help you and maybe signposting me to something on Crohn's and Colitis's website or something like that.
• 48:40
  SPEAKER_01: You know, there are resources out there, um, that would have been really helpful, but just very generic advice of like go and have sex and find out, you know?
• 48:50
  SPEAKER_01: Yeah, yeah, it's terrible.
• 48:52
  SPEAKER_03: Yeah, it's yeah, yeah.
• 48:54
  SPEAKER_01: And it's just like things that people don't think about because again, I'm Muslim, I'm from a Pakistani Kashmiri background.
• 49:00
  SPEAKER_01: We don't do things like that.
• 49:02
  SPEAKER_01: Um and I think that's why it's important to talk about cultural um, you know, your cultural experiences because maybe like a white doctor who's never had to think about, you know, my family input in my healthcare, for example, um, and the impact that your family has on you in a positive and for other people maybe a negative way as well.
• 49:25
  SPEAKER_01: Whereas like they can just say, well, this is the advice that we give you, and we expect you to follow it.
• 49:30
  SPEAKER_01: But for somebody else, it'd be like, no, but I need to talk to my family about this, I need to see what they think because I'm not sure and I want their advice.
• 49:37
  SPEAKER_01: And for them, it may be really strange because it's like, but it's your life, it's your body, you should be making this the decisions.
• 49:44
  SPEAKER_01: But in a lot of cultures, like your family is really important, and you do a lot of shared decision making.
• 49:48
  SPEAKER_01: So it's just like, yeah, talking about those kind of things to help broaden people's horizons and make them approach things a bit differently, a bit more sensitively.
• 49:56
  SPEAKER_01: Um, I think is really important.
• 49:58
  SPEAKER_01: So this was a really empowering moment for me.
• 50:00
  SPEAKER_01: I think it was my first time in the US as well.
• 50:03
  SPEAKER_01: So that was an experience I travelled by myself, which I've never done before, and you know, things like that.
• 50:08
  SPEAKER_01: Like I again I mentioned like I'm in my late 30s, so for somebody else, like solo traveling is so people do it once they leave college and they like backpack for you know half a year or whatever it is.
• 50:20
  SPEAKER_01: And yeah, exactly.
• 50:22
  SPEAKER_01: I'm gonna go find myself.
• 50:24
  SPEAKER_01: Yeah, and I went to India and you know to do that.
• 50:27
  SPEAKER_04: I went to Thailand.
• 50:28
  SPEAKER_04: Yeah.
• 50:29
  SPEAKER_04: Surely we could I'm in my late 30s too.
• 50:31
  SPEAKER_04: I why can't we do that now?
• 50:33
  SPEAKER_04: Exactly.
• 50:33
  SPEAKER_00: Um leave the family and then I got to see the guys.
• 50:41
  SPEAKER_04: I'm gonna find myself for a bit on a food shop and it'll be fine.
• 50:45
  SPEAKER_00: I found myself in the middle of a mounting.
• 50:49
  SPEAKER_00: I'll never find that.
• 50:51
  SPEAKER_00: No, but I'm I know some people go like, especially like like 30s or or so, actually, like well, like uh Instagram and social media side, I see more people now going, I'm doing the corporate jobs, I've climbed the ladder, is this it?
• 51:02
  SPEAKER_00: Right, I'm leaving.
• 51:03
  SPEAKER_00: Career switches, I'm now gonna go do it.
• 51:05
  SPEAKER_00: Because most people, you're right, will either do it straight out of college, university, but they haven't got a job, or they get to retirement and then they spend their time in retirement.
• 51:14
  SPEAKER_00: Yeah, yeah, yeah.
• 51:15
  SPEAKER_01: And even now, like I've kind of reconnected with some of my like university friends and they're kind of like, Oh, I wish I could give up working, I wish I could just have that sort of easy, soft life and things like that.
• 51:25
  SPEAKER_01: And you know, I'm like, yeah, I wake up at like 11, 12 o'clock, um, you know, I can just chill, and they're like, oh, that sounds great.
• 51:32
  SPEAKER_01: And at the time I used to feel really embarrassed about it, that I don't have that routine and I'm not going to work and I'm not making money.
• 51:38
  SPEAKER_01: But now when I see people who are my age who are like wishing that they maybe apart aside from the illness side of things, but they're they're not they're wishing that they didn't have to work and have these, you know, stressful careers and stuff, and they want to be able to just relax and wake up when they want and things like that.
• 51:56
  SPEAKER_01: I just think, oh maybe life isn't so bad.
• 51:58
  SPEAKER_01: Like, yeah, it's just it it always changes, doesn't it?
• 52:02
  SPEAKER_00: It's your perspective as well, right?
• 52:04
  SPEAKER_00: Exactly.
• 52:04
  SPEAKER_00: Everyone has their own perspective and everyone will put their own like tinted rose tinted glasses on.
• 52:09
  SPEAKER_00: Cause I'm sure if people have said that to you and you're like, I'm really I'm well, I'm suffering, like you don't want this.
• 52:15
  SPEAKER_00: Like they do you see what I mean?
• 52:16
  SPEAKER_01: Yeah, exactly.
• 52:17
  SPEAKER_01: But I think it's just you have this can like notion of what life is supposed to be like and then when you have an illness and then when you have surgery and things don't tan out the way that you expected them to, like it can be quite a difficult pill to swallow.
• 52:34
  SPEAKER_01: Yeah.
• 52:34
  SPEAKER_01: But then a few years later, when you are in remission or when you are now used to your bag and changing your bag, and it like it takes me two minutes.
• 52:43
  SPEAKER_01: I could change my bag with my eyes closed, but for someone who's newly had surgery, like it's the most daunting thing in the world.
• 52:49
  SPEAKER_01: But it just goes to show how time does make a difference, you know?
• 52:53
  SPEAKER_01: And things do get better.
• 52:55
  SPEAKER_04: Oh, that and I mean our last question, you've just answered it, to be honest.
• 53:00
  SPEAKER_04: You've covered God.
• 53:00
  SPEAKER_04: I don't think we've had someone who's covered so much in such a lot of people.
• 53:04
  SPEAKER_04: But we've learned we've also learned so much as well.
• 53:06
  SPEAKER_00: There's so many things that I have no idea about.
• 53:08
  SPEAKER_04: Um so yeah, I mean, we we always ask this to end the episode, but what advice, gosh, you've given so much, would you give to someone newly adjusting to stoma life?
• 53:18
  SPEAKER_01: Yes, I think I just want to reiterate that just be patient with yourself.
• 53:23
  SPEAKER_01: Don't expect yourself to bounce back straight away.
• 53:25
  SPEAKER_01: Like you have had major surgery.
• 53:28
  SPEAKER_01: You know, give yourself at least six months before you go back to the gym or you go back to doing those active things that you might have done before.
• 53:37
  SPEAKER_01: And I think to also just remind yourself that life might be different now, but that doesn't mean to say it's worse.
• 53:43
  SPEAKER_01: You know, you it might be different for you, and you're new it it will be a new normal for you, but it will become normal eventually as well.
• 53:52
  SPEAKER_01: And just find your own community if you don't see people in your real life who can relate to you.
• 53:58
  SPEAKER_01: Like that's the amazing part of social media where now you can go on Instagram, you can go on TikTok, you can search stoma, you can search colostomy, iliostomy, you can, you know, and you will find people who are in similar situations to yourself.
• 54:15
  SPEAKER_01: And you can build your own community, follow them, interact with them, DM them.
• 54:19
  SPEAKER_01: You know, you can have that friendship from halfway across the world, and it will make you feel better.
• 54:24
  SPEAKER_01: So even if people in your real life don't understand what you're going through, you can you'll you'll find your own community who can.
• 54:31
  SPEAKER_01: So true.
• 54:31
  SPEAKER_04: What a lush way to finish it.
• 54:34
  SPEAKER_04: Well, thank you so much, honestly.
• 54:36
  SPEAKER_04: I really hope that this episode gets the spotlight it deserves.
• 54:40
  SPEAKER_04: It's been such a pleasure, and thank you so much for coming.
• 54:44
  SPEAKER_01: No, thank you so much for having me.
• 54:45
  SPEAKER_01: You're amazing hosts, and you've just made it so easy to just just talk, really.
• 54:50
  SPEAKER_01: Fab questions.
• 54:52
  SPEAKER_01: Thank you.
• 54:52
  SPEAKER_01: I've loved it.
• 54:53
  SPEAKER_01: Thank you.
• 54:53
  SPEAKER_01: Thank you so much, guys.