Latest / Beyond the Pouch / E9: Nikki Opens up About Adapting to Life as a New Ostomate

Transcript

E9: Nikki Opens up About Adapting to Life as a New Ostomate · Beyond the Pouch

0:00
SPEAKER_03: Hi guys, welcome to Beyond the Pouch, a podcast series brought to you by Pelican, Eakin, and Respond with your hosts, Rachel and Louise.
0:09
SPEAKER_03: Dive into the world of ostomy through open and honest conversations, including the lives of many inspirational ostomers that we're lucky enough to call our friends.
0:17
SPEAKER_03: So you can get to know them beyond the pouch.
0:20
SPEAKER_01: Welcome back to another episode of Beyond the Pouch.
0:24
SPEAKER_01: If you haven't already listened to the first three episodes, please do head over to Spotify or YouTube to give them a watch and a listen and to subscribe to keep updated with our new episodes.
0:35
SPEAKER_01: We are very excited today with today's guest, Nikki, who is new to Ostumat Life, and she will be sharing her story and experience of being a new ostomate.
0:44
SPEAKER_03: Hi Nikki.
0:45
SPEAKER_03: Welcome, welcome.
0:46
SPEAKER_03: I am buzzed because I've been following you for a while and we've been we slid into each other's DMs.
0:51
SPEAKER_03: We did.
0:52
SPEAKER_03: We did.
0:53
SPEAKER_03: So I am pumped you're here.
0:54
SPEAKER_03: So and you ha you don't live around the corner?
0:56
SPEAKER_02: I don't.
0:57
SPEAKER_02: I live close to Bournemouth in the new forest.
0:59
SPEAKER_02: So it was a three-hour drive yesterday.
1:01
SPEAKER_02: But I love Wales.
1:03
SPEAKER_02: Do you?
1:03
SPEAKER_02: I love it here.
1:04
SPEAKER_02: Just everyone's so happy.
1:06
SPEAKER_02: Everyone's got cracking accents.
1:09
SPEAKER_03: Oh no, thank you for coming all this way.
1:12
SPEAKER_03: Um, you are very new to Ostermy Life.
1:14
SPEAKER_03: I am, I'm a real newbie.
1:16
SPEAKER_03: You are a newbie, but you're I mean, I found you through your content on Instagram.
1:20
SPEAKER_03: You certainly don't act like a newbie.
1:23
SPEAKER_03: Um, how are you finding it?
1:25
SPEAKER_02: Um it's a lot.
1:27
SPEAKER_02: Um the first few months are obviously really tricky finding products that work for you.
1:32
SPEAKER_02: And for me, it was it was an emergency operation.
1:35
SPEAKER_02: So it was um unexpected.
1:38
SPEAKER_02: I was told I went in for a resection, and after six days, the uh resection stitches came undone.
1:45
SPEAKER_02: So I went back in for emergency, and that that's when obviously had my stoma done.
1:49
SPEAKER_02: Um so for me it was yes, you could go in and have stoma surgery, it might turn that, but it's very unlikely you're young, you're fit, you're healthy.
1:56
SPEAKER_02: It's highly unlikely we think this is just going to be resectioned.
1:59
SPEAKER_02: Um the other thing that I'm battling with is that a lot of people that have had stoma surgery, it's a new lease of life.
2:04
SPEAKER_02: You've been so, so poorly, and I have Crohn's disease, I know what being poorly is like.
2:09
SPEAKER_02: And um you can be so so poorly, and then you have the stoma surgery and it's you you're giving your life back.
2:15
SPEAKER_02: Uh for me, it's a little bit different because yes, I was in pain, I had strictures, I was in a lot of pain and I was struggling to eat a lot of things, but actually at the moment with a hernia as well, it's almost like a balance of okay, yes, I can go out and I can eat nice things again, but I've also got to deal with a hernia and have and learning to deal with the stoma, which is a lot early days.
2:38
SPEAKER_02: Of course, of course.
2:39
SPEAKER_02: So, yeah, that's that's how it's going.
2:41
SPEAKER_01: Yeah, because I think the thing is, is obviously IBD is like one of the most common reasons for people to have stoma surgery, but the problem that you've got with Crohn's disease, even though you've had the surgery, it doesn't take away the fact that you still have Crohn's and that you can still develop further problems.
3:00
SPEAKER_01: And obviously, you've had sepsis really bad, and I find that relatable because that happened with me, but you you literally went in to have a couple of strictures removed, which is common because I think what people don't realise is with Crohn's disease the scar tissue tunnels off from the bowel and sticks to everything.
3:18
SPEAKER_01: Yeah.
3:19
SPEAKER_01: Yeah.
3:20
SPEAKER_01: Um so it's a bit messy, and obviously you had the strictures removed.
3:24
SPEAKER_02: Yeah, so strictures removed on the 22nd of March 2023, and then uh stoma surgery.
3:30
SPEAKER_02: Sorry, 16th of March was the stricture surgery.
3:33
SPEAKER_02: Yeah.
3:34
SPEAKER_02: 22nd was stoma, so it's eight months ago, yesterday, that I had it done.
3:38
SPEAKER_02: Um, but more than that, that was I had sepsis and it was supposed to be in there for five to six days with the stricture surgery.
3:44
SPEAKER_02: I was gone for a month.
3:45
SPEAKER_02: I've got two young children who uh they came to see my mother's day, so I think it was the 18th, and then I didn't see them again until middle of I was too poorly.
3:53
SPEAKER_02: I couldn't bear the thought of them coming in to see me in that way.
3:57
SPEAKER_02: So and I'm I'm a mum, like going that long without seeing your babies is is a really long time.
4:02
SPEAKER_02: And it was just one thing after another.
4:04
SPEAKER_02: As soon as I got over one hurdle of one infection, I got another.
4:07
SPEAKER_02: Um so yeah, I ended up with pneumonia as well, which I just added to the list.
4:12
SPEAKER_02: It's never fun.
4:13
SPEAKER_03: No, um so how what was childlike childhood like for you and how did this all come about?
4:20
SPEAKER_02: So uh fairly normal childhood, I actually hit 14 and I went to Egypt on a family holiday and I got a tummy bug.
4:27
SPEAKER_02: And it was basically a case of I got that tummy bug and I never got better.
4:30
SPEAKER_02: And it went on for two years.
4:32
SPEAKER_02: My mum took me back and forth to the doctors um and I got asked if I was taking recreational drugs.
4:38
SPEAKER_02: Uh I got asked if I could be pregnant, I got asked if that was one of the laxatives.
4:44
SPEAKER_02: Are you taking at 14?
4:45
SPEAKER_02: I didn't know what a laxative was.
4:46
SPEAKER_02: And I remember sitting there thinking, I don't even know what that is.
4:49
SPEAKER_02: And my mum actually said to um some of the GPs that I saw, could this be Crohn's disease?
4:53
SPEAKER_02: And they said, No, she's too young.
4:55
SPEAKER_02: Oh, this is too young and it took two years.
4:58
SPEAKER_01: This is the problem.
5:00
SPEAKER_01: A lot of women are diagnosed with Crohn's disease in their early to late teens, so anywhere sort of between the age of sort of 12 to 20 always tends to kick off at stressful and emotional times, so exam periods, GCSEs.
5:18
SPEAKER_01: And the amount of women that I've had message me that have been misdiagnosed as anorexic, bulimic, even though they have shown every symptom of Crohn's disease.
5:29
SPEAKER_01: I mean, it it took me two and a half years to get a diagnosis, and I only got mine because I developed a fistula and they was they were the the GP, I had cellulitis, 18 years old with cellulitis on my legs, and I've got my GP laughing at me, like, oh, you've got an old person illness.
5:48
SPEAKER_01: And I'm like, well, this kind of tied in with everything else, but it's it's just crazy to think that the GP's automatic response is that you're doing.
5:59
SPEAKER_01: Is it is it something that you're doing to yourself?
6:01
SPEAKER_01: It's not uh, oh, we need to investigate this, we need to look at it, it's what are you doing to yourself, which is really, really bad.
6:08
SPEAKER_02: Yeah, well, the same happen I had a perianal abscess, so I remember going to my photography class in college, I made it to college, uh, got through my GTSEs and went to college, and I was walking up the stairs to my photography class, and I thought, this is I've got a painful lump near my bum, and this is not ideal, this is real uncomfortable.
6:23
SPEAKER_02: So I went to the doctors and they gave me a week of antibiotics.
6:26
SPEAKER_02: A week later, I literally could barely stand, and I was missing more and more days of college.
6:31
SPEAKER_02: So I went back to the doctors and they said you need to go to A and E now, and it was a perianal abscess.
6:35
SPEAKER_02: So that's and then once they'd put those two together, that's what it was like, hang on a minute, um, you've got Crohn's disease.
6:41
SPEAKER_02: And I remember going into my consultant's office and he said to me, So Nikki, when were you diagnosed with Crohn's disease?
6:49
SPEAKER_02: And I just said about three seconds ago.
6:52
SPEAKER_02: I had no idea what it was.
6:53
SPEAKER_02: Um I'd never heard of it.
6:55
SPEAKER_02: And but for me, it was like after two, two and a half years, someone's got an answer, and someone's telling me it's okay, you you've been poorly for a reason, and we're going to help you.
7:06
SPEAKER_02: And he's been my consultant ever since, and he is my absolute hero.
7:10
SPEAKER_02: He's incredible.
7:12
SPEAKER_03: Yeah.
7:12
SPEAKER_01: Um, I was just gonna have a check say your your perianal abscess, it wasn't as simple as here's a course of antibiotics.
7:20
SPEAKER_02: No, so I went in for surgery um and they drained it.
7:24
SPEAKER_02: They put in cetons and no, they didn't, sorry, they drained it first off and I had it packed every day for three months.
7:30
SPEAKER_02: Uh so every day I'd have a nurse come to the house and they would pack it, which was agony.
7:35
SPEAKER_02: It was really painful.
7:36
SPEAKER_01: It was about the size of 50 peepence.
7:38
SPEAKER_01: Yeah, nothing worse than a bit of silver acrosil that's kind of dried and stuck to the silver.
7:42
SPEAKER_02: It's like the seaweed stuff.
7:43
SPEAKER_02: Yeah, horrible.
7:45
SPEAKER_01: Stuck to the healing tissue, yeah.
7:46
SPEAKER_02: Yeah, and every night I'd have a bath.
7:48
SPEAKER_02: So every morning I'd have a bath and the the the um packing would come out and then I'd wait for the nurse to rock up and she would repack it again.
7:55
SPEAKER_02: And on the last day of me having it packed, I thought I could feel a lump on the other side.
7:59
SPEAKER_02: Oh, this can't be happening.
8:00
SPEAKER_02: And it was a horseshoe shape.
8:02
SPEAKER_02: So that's when I went back in for surgery and they put the cetons in to stop it coming back.
8:06
SPEAKER_02: And cetons I've kept ever since.
8:08
SPEAKER_02: I still have them.
8:09
SPEAKER_02: Um and I'll have them forever more.
8:11
SPEAKER_02: Okay.
8:12
SPEAKER_02: So yeah.
8:14
SPEAKER_01: So that's a fistula, isn't it?
8:16
SPEAKER_01: Yeah, just so it's official, so it it was from one point to another point, and obviously the official are tunnel to between point A and point B.
8:24
SPEAKER_04: That's right.
8:25
SPEAKER_01: For for the horseshoe shape.
8:27
SPEAKER_01: Why have they never addressed the fact that you've still got the seatons in?
8:31
SPEAKER_01: Because at some point if I don't know.
8:33
SPEAKER_02: I think I've had I'm I mean, when you have as many surgeries as as we uh have, you lose track sometimes.
8:39
SPEAKER_02: I think I've had them changed, but for me it's a safety net.
8:43
SPEAKER_02: I know that that's not going to happen whilst they're in place.
8:45
SPEAKER_02: They don't bother me, I don't feel them, they don't make any difference to my life.
8:48
SPEAKER_02: It's a bit I describe them a bit like having false teeth.
8:51
SPEAKER_02: Like I know I've if I've got false teeth, I know I've got false teeth, but you don't know I've got false teeth, and nobody else, nobody else can see them or look at me any differently.
8:59
SPEAKER_02: And it's the same with a stomach, isn't it?
9:01
SPEAKER_02: Like, you know it's there, but nobody else does if you don't want them to.
9:06
SPEAKER_01: I mean, how do you m how do you manage with that?
9:09
SPEAKER_01: Because obviously there's always the risk with Crohn's disease.
9:11
SPEAKER_01: So for me, my abscesses, my internal ones, are always on my abdomen.
9:17
SPEAKER_01: I'm very lucky touch wood if this is real wood.
9:19
SPEAKER_01: I hope it's real wood.
9:20
SPEAKER_01: Um I've never had them on my bottom, that they've always been in and around my stomach.
9:26
SPEAKER_01: And it's it's difficult because you go to the GP, you know what it is, and the GP's going no, and like no, yeah.
9:33
SPEAKER_01: Yeah.
9:34
SPEAKER_01: I I haven't had any further abscesses.
9:36
SPEAKER_02: That that's abscesses, is that a word?
9:38
SPEAKER_02: Yeah.
9:38
SPEAKER_02: Yeah.
9:39
SPEAKER_02: I've never had anything else other than when I've been in hospital this time and I had collections in my tummy.
9:43
SPEAKER_02: Yeah.
9:44
SPEAKER_02: Um I've never had anything else with perienal disease.
9:47
SPEAKER_02: Like I've been okay since having them in.
9:49
SPEAKER_02: What caused the collections in your abdomen?
9:51
SPEAKER_02: Sepsis.
9:52
SPEAKER_02: So that was when I was in hospital.
9:54
SPEAKER_02: Um I don't know what ca I'm I'm guessing it's when stuff was left in me, um where the stitches came undone from the resection.
10:00
SPEAKER_02: So they obviously jet washed out as much as they possibly could and left drains in, they took the drains out and then another collection um formed.
10:08
SPEAKER_02: So I had to go.
10:09
SPEAKER_02: Easter Sunday, actually, I went down for more drains to be put in.
10:12
SPEAKER_02: I mean, drains being put in under local anesthetic.
10:16
SPEAKER_02: Oh my gosh.
10:18
SPEAKER_02: Like the pain was like it horrendous.
10:22
SPEAKER_01: It can be considered as considered as brutal.
10:24
SPEAKER_01: I mean, I've had op open winds de brided on gas and air because I couldn't risk going back down under general anesthetic because I'd had a lot over the course of six weeks.
10:33
SPEAKER_01: And it's just they're just like, oh you you're okay, you're just gonna have to do it like this, and you're like, but I don't want to do it like that.
10:41
SPEAKER_01: I don't want to go to sleep.
10:42
SPEAKER_01: No, you can't go to sleep.
10:44
SPEAKER_03: Incredibly, you went on to have two pregnancies.
10:47
SPEAKER_02: I did, yes.
10:48
SPEAKER_02: That was um I mean there's another one to put in there as well.
10:51
SPEAKER_02: I was on the pill, um, and my daughter love her to pieces, and she'll probably listen to this at some point.
10:57
SPEAKER_02: Love her to pieces, I would never change it, but she was an accidental one because I wasn't absorbing the pill.
11:03
SPEAKER_03: Which they don't tell you.
11:05
SPEAKER_02: No, that's the other thing, and I know it was discussed on a previous podcast, in that when you're diagnosed with Crohn's disease, you should have some sort of meeting or something where they can that people can help you make the right decisions when it comes to the contraception.
11:19
SPEAKER_02: Because yeah, I was 20 and 12 weeks into a relationship, pregnant.
11:25
SPEAKER_03: Oh.
11:25
unknown: Yeah.
11:26
SPEAKER_02: I would not change her for the world.
11:27
SPEAKER_02: She is my absolute angel.
11:29
SPEAKER_03: But I mean, you know, when it's worked out well and you're with your partner, husband, husband, still, um, went on to have another child and that's brilliant.
11:36
SPEAKER_03: But you know, if you're not in the right place for that to happen, but you you know, it my it's just It was a lot, yeah.
11:43
SPEAKER_03: Why do they not?
11:44
SPEAKER_03: That's such Oh, yeah.
11:46
SPEAKER_03: I mean, I I've had appointments where I've actually been offered different types of contraception.
11:50
SPEAKER_03: I'm having to tell them what I can't have.
11:53
SPEAKER_03: That w how is that?
11:54
SPEAKER_03: Okay, you know, they should be telling us.
11:57
SPEAKER_03: I mean I'm guessing if we all go to the GP, we're gonna have pr pretty good bulk of notes on the system about ourselves.
12:04
SPEAKER_03: There will be a diagnosis.
12:06
SPEAKER_03: Yeah, it just blows my mind.
12:09
SPEAKER_01: I don't know, different different people, different different situations, because there are some people with Crohn's disease that can take the bill that don't have an issue.
12:16
SPEAKER_03: No.
12:17
SPEAKER_01: But do they know that for definite until you know it's a risk?
12:22
SPEAKER_03: And and uh even if you were told it is a risk, that'd be something.
12:26
SPEAKER_03: It unless people are, but I wasn't.
12:28
SPEAKER_01: I mean, it's a risk that you can take.
12:30
SPEAKER_01: I mean, you know privately I after the last podcast recording that I had a bit of a crappy time.
12:37
SPEAKER_01: So obviously, with like with regards to contraception, I had the old coil in, copper coil for nearly a decade, no issues.
12:46
SPEAKER_01: I then had to have it taken out and I had to have a new one put in.
12:49
SPEAKER_01: They suggested to me the Myrena, had the Myrena in.
12:52
SPEAKER_01: Six first six months, absolutely great.
12:54
SPEAKER_01: Other six months, phantom pregnancies, taking that out, can't deal with that.
12:59
SPEAKER_01: They've put because of everything that's gone on with the cyst, they put me on hormone patches.
13:03
SPEAKER_04: Yeah.
13:03
SPEAKER_01: Um, and now the hormone patches are giving me um chemical pregnancy, so I'm falling pregnant, but because of obviously the medication that I'm on and the state of my insides, baby's not taken, so I keep having chemical pregnancy miscarriages.
13:17
SPEAKER_01: Um, and it's very difficult because I know I can't take the risk of having another child because uterine rupture, but the emotional damage that everything that the sister's causing with the hormones and everything at the moment, it can get quite difficult, and this is what needs to be talked about, and this is what women need help with.
13:43
SPEAKER_01: The whole system of women's gyneological, mental, reproductive health needs to be addressed and improved.
13:54
SPEAKER_01: So, especially women with chronic illnesses do not have to suffer and do not have to make the choice that can either make them or break them.
14:03
SPEAKER_01: And the problem that you've got, I mean, I know a lot of consultants, especially gynees, not gynees, sorry, um gastros, will turn around and say, Oh, well, when you've got Crohn's disease, that's that's a natural um contraceptive because your body's in a state you won't fall pregnant, but that's no guarantee, and the drugs that they put you on with Crohn's disease from now, immunosuppressants are safe to have a pregnancy on, but back when you had your little girl at 20.
14:36
SPEAKER_02: I think I they took me off them at twelve.
14:37
SPEAKER_02: I was on a fleximab, they took me off it at 27 weeks.
14:40
SPEAKER_01: Yeah.
14:41
SPEAKER_02: But the two times that I've been pregnant have been mostly the healthiest I've been.
14:46
SPEAKER_02: I was really sick with my son, but that was pregnancy sick, that wasn't Crohn's sick.
14:49
SPEAKER_02: I was sick every day for 28 weeks.
14:51
SPEAKER_02: Every time I brushed my teeth, I puked.
14:54
SPEAKER_02: Yeah, that was pretty awful.
14:55
SPEAKER_02: But actually, Crohn's wise, the those two lots of nine months is the healthiest I've ever been.
15:00
SPEAKER_03: Did you have substantial flares following having your babies or how was your health following?
15:07
SPEAKER_03: It was okay.
15:08
SPEAKER_02: It was okay, yeah.
15:09
SPEAKER_02: From from 20 until 30, I've done alright.
15:12
SPEAKER_03: Yeah.
15:13
SPEAKER_02: I've had ten years and I've put this, you know, I've said it before, that for those ten years I've been in the drive and seat, but the last three years Crohn's has been back in it.
15:22
SPEAKER_02: It's been taken over a little bit and it's at the front of my mind all the time.
15:26
SPEAKER_01: I mean, how do you find that?
15:28
SPEAKER_01: Because I know as a mum with my daughter, especially the last year, it's been hard for her because mummy's not being well and I'm not my usual happy self, you know.
15:39
SPEAKER_03: It's hard, isn't it?
15:40
SPEAKER_03: You can't be all the time.
15:41
SPEAKER_01: How do how does that make you feel as a mum?
15:44
SPEAKER_01: Because it's always in the forefront of your mind and you push yourself to the point of okay, I will take them out, we will go and do a day out, we will go to the theatre, we will go, you know, to a market, but then you've got the three or four days afterwards where you're wiped.
15:57
SPEAKER_01: Where you're wiped, and all you want to do is sleep.
15:59
SPEAKER_01: It's different.
16:00
SPEAKER_02: Mum guilt, isn't it?
16:00
SPEAKER_02: It's mum guilt to whole new levels.
16:02
SPEAKER_02: You get mum guilt when you go to work, you get mum guilt when you decide you want to go away with your husband for a weekend.
16:07
SPEAKER_02: You still have that as a parent, you still have that guilt.
16:10
SPEAKER_02: When you have a chronic illness mixed in with it, it's it's ten times worse because it's there's nothing you can do about it.
16:16
SPEAKER_02: If I decide that I don't want to go on a weekend away with my husband, I'd rather spend that weekend with my children, that's on me.
16:22
SPEAKER_02: But if I can't get out of bed for a weekend because I'm wiped out, or before stoma, I I couldn't get off the toilet and going out for dinner wasn't an option for me, that's a guilt that you can't you can't fix yourself.
16:35
SPEAKER_03: No.
16:35
SPEAKER_01: I mean, how are you with a vitalism mab?
16:37
SPEAKER_01: Because I know I was on vitalism ab before my protectomy surgery.
16:42
SPEAKER_01: Um and I always find that two to three days after having the infusion you just feel like absolute hell.
16:49
SPEAKER_02: Yeah.
16:49
SPEAKER_02: Yeah, I think I probab mine's probably 24 hours.
16:52
SPEAKER_02: So I get home from I I have tried uh self-injecting, it wasn't for me.
16:56
SPEAKER_02: I just didn't get on with it very well.
16:58
SPEAKER_02: Um I asked to go back into to have an infusions, which I do, and I go back to the same place, the same ward.
17:04
SPEAKER_02: It's very familiar.
17:06
SPEAKER_03: And how do you five going on there?
17:09
SPEAKER_03: Because I mean I think I've posted a few times where in a weird way, if you go into the same places, it can be comforting because you know your surroundings and it's what you used to, but at the same time, so triggering, and any bad experiences are just gonna flood back.
17:23
SPEAKER_02: I've actually had a conversation with my consultant on Monday about this.
17:26
SPEAKER_02: He said, How do you feel about coming into the hospital?
17:28
SPEAKER_02: And I said, Coming in to see you, coming in to see my surgeon, like in a different room, fine, going in for treatment, fine.
17:34
SPEAKER_02: I've been to go in there for since I was 16, 17, like it's a familiar place.
17:39
SPEAKER_02: The nurses are familiar, even down to the mugs, they're familiar mugs, which is just so ridiculous, but it is, it's familiar, the smells are familiar.
17:46
SPEAKER_03: The chairs, the wallpaper, the yeah if you took me into the wards that I was on in March, I don't think I'd cope.
17:54
unknown: No.
17:55
SPEAKER_02: So going into the hospital for for another knowing I'm coming straight back out again.
17:59
SPEAKER_02: If you told me you're going in for another operation, I'd I don't know how I'd cope.
18:04
SPEAKER_01: Have you been offered any help or referrals for counselling after that?
18:10
SPEAKER_01: Because medical PTSD is a thing.
18:12
SPEAKER_04: Yes.
18:13
SPEAKER_01: It's not addressed enough.
18:15
SPEAKER_01: It's just, oh, you've you've had an operation, oh the operation went wrong, oh you had sepsis, oh pneumonia.
18:23
SPEAKER_01: But you're but you're all right now.
18:30
SPEAKER_02: Um have I been offered help?
18:32
SPEAKER_02: I have been shown avenues.
18:35
SPEAKER_02: I have I've been quite open to I know I need therapy to help myself.
18:39
SPEAKER_02: I have now suffered with panic attacks and anxiety, which I never, never would have done before.
18:43
SPEAKER_03: Propanalamps could be that yeah, but do you absorb it and then they're gonna tell you that?
18:49
SPEAKER_02: Exactly.
18:50
SPEAKER_02: So I yes, I have been I I've put myself down.
18:53
SPEAKER_02: There's a waiting list.
18:53
SPEAKER_02: So I've been on the waiting list for seven months so far.
18:55
SPEAKER_02: Have you tried um Silver Cloud?
18:59
SPEAKER_01: Yeah, I'm there is uh it's very difficult.
19:03
SPEAKER_01: It's a long waiting list for counselling going via the mental health team and uh the GPs, but there is, especially for like our area, and Bournemouth is probably covered as well.
19:14
SPEAKER_01: Um, you've got Silver Cloud, you can go for a referral, Silver Cloud, they will do an assessment with you.
19:21
SPEAKER_01: They will then offer you, I don't know, either six to twelve weeks of CBT, which is cognitive behaviour therapy.
19:29
SPEAKER_01: If they feel that that is not helping, they will also get you quicker and pushed through for a quicker mental health for the proper counselling.
19:37
SPEAKER_01: That's what I've done.
19:38
SPEAKER_02: I've done gone through the silver cloud and then I've been put through to talking therapies, and that's where I'm on the waiting list.
19:46
SPEAKER_02: Yeah.
19:47
SPEAKER_02: Some days I'm alright with it.
19:48
SPEAKER_02: Some days I'm just like pattern, is there a lot of it?
19:50
SPEAKER_02: No pattern.
19:50
SPEAKER_02: I mean going to I went to my children to the fireworks and it was really busy, really busy.
19:56
SPEAKER_02: And I thought, I can do this, I can do this, and I kept in my head, I was going, you're safe, you're fine, nothing bad's gonna happen, you're fine, keep going.
20:02
SPEAKER_02: And then it was the first bang, the fireworks, and it was just like flashbacks, my heart rate went, sweating, and my first thing is floods of tears, which is when everyone's got their phones up, yeah, videoing the fireworks, and I'm just in floods of tears having a panic attack.
20:17
SPEAKER_02: It was it's not ideal, but I've got to keep doing these things because at one at some stage it it's I'm gonna be okay.
20:25
SPEAKER_01: Yeah, but it takes time.
20:27
SPEAKER_03: I mean eight months is nothing, is it, as well?
20:31
SPEAKER_03: Like, I mean, you you said that you we were chatting before and you said about how you've started your account on Instagram and raising awareness, and you said that you've you've gained so much from being on there.
20:42
SPEAKER_02: Yeah, I've gained a lot.
20:44
SPEAKER_02: I've the reason I started it was because I've I learned so much through other people's accounts.
20:51
SPEAKER_02: And I thought if I can, if I can one person learns anything from me, then it's worth it.
20:56
SPEAKER_02: It's also a bit like a diary for me.
20:59
SPEAKER_02: So I have notes on my phone and I don't post everything that I write, but I write things that I'm nervous about, that I've struggled with, that I've tried and it's not gone well, or everything I've I think or I feel I write down.
21:11
SPEAKER_02: And if you had given me a journal in March to handwrite, there's no way I would have done it.
21:15
SPEAKER_02: I probably would have kept it up for a week.
21:17
SPEAKER_03: I mean, even when you buy like a pretty one, I've done it before.
21:19
SPEAKER_03: I've gone, oh, that's really pretty with it when it's part of the back.
21:22
SPEAKER_03: I'll buy a pen and I'll start a shooting.
21:24
SPEAKER_03: Even in the drawer under the bed for 18 months, you buy stickers, you find a pinch and do it.
21:31
SPEAKER_01: How do you find navigating social media?
21:33
SPEAKER_01: I mean, I've been doing this for nearly 10 years and I've kind of found my tribe and my people.
21:41
SPEAKER_01: Whether my my personal views are my personal views, you know, I don't always agree with everything that I see.
21:47
SPEAKER_01: Yeah, but we're all different.
21:48
SPEAKER_01: Absolutely.
21:49
SPEAKER_01: And I mean, how have you found that?
21:51
SPEAKER_01: Because your content that you post is very relatable, but your content is probably the same to like what we post up with very functional as well.
22:02
SPEAKER_03: Like so it's because of this woman that I that I wore Crocs in Jake's latest operation.
22:07
SPEAKER_03: I didn't so obvious when you think, but again, that was your account that I was following that you'd posted that.
22:14
SPEAKER_03: And that's the only reason why I took them.
22:16
SPEAKER_02: The reason I thought about the Crocs is because the first time I changed my stoma by myself, it was a big moment.
22:22
SPEAKER_02: And I was still connected to a lot of tubes and wires and drips and all sorts.
22:25
SPEAKER_02: And I was in a nighty I mean it takes a lot doesn't it to undo everything, take the nighty off, have a shower.
22:30
SPEAKER_02: I was like shower, new nighty, we're good.
22:34
SPEAKER_02: Um so I put my new nighty on, got my wires back on, the nurses call back in it was all a bit probably like a 50 minute ordeal of doing that.
22:42
SPEAKER_02: And I hadn't done my sewing bag up wash in.
22:45
SPEAKER_02: So I just poodled down my leg and onto my shoes.
22:48
SPEAKER_03: Then it goes in between rinsed off yeah rinse it off.
22:52
SPEAKER_01: I think the worst thing for me is you know we all talk about our hospital hospital experiences and I always my surgery is always done on a Friday and over the course of the weekend until Monday it's always the HCAs and the agency staff and they they they don't quite don't always have quite the same level of care as the matrons and the nurses do on a Monday to Friday and my bag had leaked everywhere.
23:19
SPEAKER_01: Oh I'm still attached to drains it's Saturday night I only had my surgery 24 hours ago and the HCA's telling me that I've got to clean it up the enhanced recovery those hasn't even got me out of bed yet walk and you're telling me that I've got I've got to clean this all up myself because you don't want to do it.
23:42
SPEAKER_03: I'm I'm like I'm so I've got an like an elective C section in March because I'm due then and I'm I'm thinking now God it's going to be an epidural it's going to be this that I'm thinking right I need to start training my partner to do my bag I mean he's done it once he's happy to do it if I need it but I thought I need this man prepped.
24:00
SPEAKER_03: I need this man on point because I'm I've never had an epidural with a stone and I'm thinking oh am I going to feel it getting full is it gonna leak no no no what am I going to do?
24:10
SPEAKER_01: Like mo most C-sections apart from the occasional horror story like my one I've had two lovely C-sections.
24:20
SPEAKER_01: Mo most of them only I've had a good one to be fair most of them only take 20 minutes so you you yeah that epige was going to be in for a couple of hours but the actual C-section from start to finish if you've got a good surgeon only takes twenty minutes.
24:35
SPEAKER_01: Bish bash bosh done baby out.
24:37
SPEAKER_03: Well I mean because it's my second one and I've had stoma surgery since the first one for the second time of my life they said it's gonna take longer because of scar tissue and they're gonna have to dig through but that yeah I j I just keep getting this reoccurring dream of like you're gonna take my mining hat.
24:54
SPEAKER_03: Got the yeah I got I'm gonna have the baby everything's gonna be all lovely and then I'm just gonna feel well I'm not I won't even feel the trickle of poo down my leg.
25:02
SPEAKER_03: Will I?
25:03
SPEAKER_03: I'll just be basking in a pile of poop it depends it depends what they give you.
25:07
SPEAKER_01: I'll smell it that'll be it I'll smell it depends what they give it depends on what they give you for pain relief after you've had the big you know what?
25:14
SPEAKER_01: Drainable bag yes that's an idea drainable yes there you go I've just yeah bag yeah we'll ask we'll ask the guys at Pelican if they can get you a couple of drainage bags a high output bag with the rosty tap on it you'll be that's only any good bag if your output's like water if your output's quite thick you're gonna be a little bit I'll just have a marshmallow party the night before it'd be fine.
25:37
SPEAKER_03: Pack 'em in what's marshmallow party?
25:39
SPEAKER_02: Doesn't marshmallows make it thicker?
25:42
SPEAKER_03: Oh yeah.
25:42
SPEAKER_01: Yeah but you don't make it thicker if you want it draining out easily I mean if it's really thick you're not gonna get it out of the tongue and it's not gonna go anywhere.
25:54
SPEAKER_01: You're gonna have to take the bag off and put a new one on.
25:57
SPEAKER_01: Obviously the the thicker the output the heavier it is you don't feel weight though do you when you've you're numb?
26:05
SPEAKER_02: I can't remember what do you feel you feel weight I think you've I think you get the feeling back quite quick.
26:11
SPEAKER_02: We get the itchy legs get the itchy legsy legs when they're coming back round.
26:15
SPEAKER_03: Yeah you'll be fine yeah super exciting oh so exciting so exciting and so you have signed up to do what tell the people what have you signed up to I have signed up to the London Marathon.
26:32
SPEAKER_03: Woohoo crazy.
26:34
SPEAKER_03: It is crazy.
26:36
SPEAKER_02: So tell us who you're doing it for so I'm doing it for Crows and Colitis UK I actually got a place in 2023 but how's your training going?
26:44
SPEAKER_02: Slow but slow is better than not at all.
26:46
SPEAKER_02: Absolutely so I'm back to running I say back to running I ran 5k like four times in my life and then signed up to a marathon.
26:55
SPEAKER_03: Yeah that's a m that's incredible but not stupid.
27:01
SPEAKER_02: What gave you the oomph to do it what made you want to do it I actually did the moon walk so the uh the moonwalk is through the night uh it's 26 miles same as a marathon in a bra um and I did that I think it was 2019 and myself and my mum walked it in seven hours if I can walk that fast a bit of training I needed I needed a focus.
27:20
SPEAKER_02: I had so much Crohn's life happening.
27:22
SPEAKER_03: When did you do that pre-stoma surgery yes it's 2019 I did the walk well that's pretty cool you were averaging about four miles an hour that's pretty good sorry that was quick working of it it wasn't I didn't know you were so gifted in mathematics I'm an accountant oh yeah oh well you can't be crap then that's quite quick isn't it that was quick so how is your surgery so after your surgery how soon were you starting to start running so I started dog walking again I've got two dogs so I started dog walking that must have been August what doggies have you got?
27:55
SPEAKER_02: I've got a Doberman called Seven and I've got a German shorthead pointer called Luna do they take up the bed?
28:03
SPEAKER_02: They don't sleep in the bed they sleep we c I wouldn't have space for them both in the bed and the mess they create they just stay downstairs in the kitchen they're in their kitchen lens.
28:11
SPEAKER_01: You have to walk them quite far to kick knacker though.
28:13
SPEAKER_01: Yeah so my husband actually walks one of them and I walk the other because they're both I did the thing you know when you have sometimes people have children they're like oh let's have two under two error does that help no don't do it never do that no not when they start going through the velociraptor literally dogs from the age of one to two they have what we call the velociraptor stage.
28:33
SPEAKER_01: Yes.
28:33
SPEAKER_01: What's that?
28:35
SPEAKER_03: I'm coming from a person who don't have dogs so I don't know what you're all about.
28:37
SPEAKER_01: Bark, disobedient, just generally a pain in the bottom they give you like the sense of security for the first six months.
28:44
SPEAKER_02: Oh my god I've got a golden puppy and then they hit like nine eight months, nine, ten months and it's teenager years.
28:50
SPEAKER_02: So they just everything's chewable.
28:53
SPEAKER_02: Yeah.
28:53
SPEAKER_02: Zoomies are fun.
28:55
SPEAKER_02: My s my Seven, my Doban ate seven cushions.
28:58
SPEAKER_02: We don't have cushions on our sofa anymore swallow it.
29:01
SPEAKER_03: They chewed or just chew it and spit it out yeah so it's like bits of cushion all over my kitchen.
29:05
SPEAKER_01: Yeah Ruby likes anything that smells a daddy.
29:08
SPEAKER_01: She doesn't touch my stuff it's just daddy I think I don't know if she's doing a love or hate campaign but the other Seven likes hats as well.
29:14
SPEAKER_02: She's eaten quite a few of my husband's hats.
29:16
SPEAKER_02: Seven so that came from you know Len Goodman from Strip Leads at Seven that's where it came from so when we're shouting for her in the forest that's how we shout for her.
29:26
SPEAKER_02: And that's quite a lot that's hilarious.
29:29
SPEAKER_03: Do you do it like Len Goodman?
29:31
SPEAKER_01: Seven oh that is amazing I mean how how do you find because obviously those kind of dogs I've got two dogs you know average you know when I was hiking with them average sort of like 15k with them on a Sunday that's probably an average what you have to do on a day to knack out the dummy out but how I've before surgery I was I could walk a long way hour and a half two hours of of walking seven and to be fair Luna at the time um now I do I just walk slower and let them run because they can get just as much exercise.
30:05
SPEAKER_01: If I'm walking slower it doesn't Do you feel confident like obviously going out like with what was your first time like going out for a walk with a dog with your stomach.
30:14
SPEAKER_02: I found every single first time terrifying.
30:17
SPEAKER_03: Anything I've done the first time is what would your advice be for people who are going looking to take those first go for it because take a safety kit with you.
30:30
SPEAKER_02: My safety kit comes absolutely everywhere.
30:33
SPEAKER_02: What's in your kit?
30:35
SPEAKER_02: My kit I have two two stamer bags some dry wipes some drops the Respond drops I have those in there.
30:42
SPEAKER_03: Oh what what scent do you have?
30:44
SPEAKER_02: I have the jasmine ones.
30:45
SPEAKER_03: I like them they do a Christmas scent don't they don't branded is it Christmas they do because I still I've still got the one they sent me last year it's cinnamon and sandalwood yeah yeah just like for breeze for your bag yeah bag I mean if there's if it's a good do you still do that yeah they still they still do that they still do that honestly yeah what's better than that imagine emptying your bag and going mmm mince pies um the first few times oh actually yeah because of the inside of the mince pie would make you think of the poo no that's a step too far that's just mince oh I was gross but imagine if your food isn't undigested it's gonna even look even more like mince pies no no if you've got a beige coloured bag then even more so anyway.
31:35
SPEAKER_03: Yeah I'm all about the black black bags the black bags so you wear the mode of E.
31:41
SPEAKER_03: I do so what so why?
31:44
SPEAKER_02: Um this is where you go because you two shared it well basically that's what it comes down to is I because everyone no honestly it was and this is another reason why I started the Instagram thing is because I didn't know about different types of bags different except like the Eakin free seal rings I didn't know about them.
32:03
SPEAKER_02: Yeah and it wasn't until I've watched and I thought I need to try that because I'm having issues here.
32:06
SPEAKER_02: My uh stonewall's really flush so that is it what's it like now?
32:10
SPEAKER_02: It's not anymore.
32:11
SPEAKER_02: It's come out.
32:12
SPEAKER_02: How much does it pop out?
32:14
SPEAKER_02: Um I don't know like it ch it changes.
32:18
SPEAKER_01: If I do you feel that maybe that yours points out a little bit more now because of the hernia probably yeah yeah yeah probably so do you have a convex bag or what yeah convex firm or soft?
32:31
SPEAKER_03: Soft.
32:32
SPEAKER_01: Ooh see I wear firm do you yeah do you find that obviously being quite new to stoma life and obviously only having the surgery in March how did you find like trying and finding what works for you?
32:46
SPEAKER_01: Because some stoma nurses are absolutely amazing they will give you the world other stoma nurses don't always give you the correct tools shall we say and you kind of have to discover them yourself.
32:59
SPEAKER_03: Yeah it's like you've sort of let out into this world and you get the how many options were you you know when you were discharged and you would have been given a standard I don't know what brand it doesn't matter but when is it that you how long did you go with that first bag?
33:12
SPEAKER_03: Did you obviously didn't stick with that first bag.
33:14
SPEAKER_03: No I didn't how many how much of you tried different things and how how easy was it to get options?
33:22
SPEAKER_03: It was a lot for eight months.
33:23
SPEAKER_02: It was quite easy that was literally in the first two months um but I did it because I was going back I wasn't um with any any delivery company so I was going back to the stomach every week at the time to have a thing checked so every time I went back I was like I was quite fussy.
33:41
SPEAKER_02: I'm a fussy person.
33:42
SPEAKER_02: Even down to some of the the textures of them they were too I think I used the word too too grannyish for me.
33:48
SPEAKER_03: They looked like an old person's well ultimately you've got to wear that 24 hours a day and you've got to look at it accept it and it's part of your recovery.
33:57
SPEAKER_03: So I think there's a lesson there in that you're not too fussy, you're just advocating for yourself.
34:02
SPEAKER_03: And and if being fussy is what it takes, be fussy, be fussy, be fussy.
34:07
SPEAKER_03: Yeah but being fussy is better than putting up with something that's subpar that's causing issues because you're not given the option to you should be proud of yourself for doing that and going back and forth because a lot of people might not feel they can not want to and well most people don't know that they can do that.
34:26
SPEAKER_02: Yeah exactly the the thing the best advice I could give someone who was is struggling to find the right bag or accessories for for themselves would be to write down to have a list of the pros and cons for each bag and make sure you fill it in and then you can look back on that and be like hang on a minute that's the one I got on best with let's try that one again.
34:44
SPEAKER_02: Or I'm not gonna do that one because my skin re like don't try the ones that your skin react with just don't do that.
34:49
SPEAKER_03: Yeah um it's quite a sensory experience like you said about you said before about the feeling of the material and some bags and it's not just oh yeah my skin's alright.
34:58
SPEAKER_03: You've got to be able to look at it and feel comfortable with what it looks like what it feels like against your skin and there's so many variables isn't there.
35:05
SPEAKER_02: And I think the fact that it's that I use the black bags like I I'm someone who wears black undies all the time.
35:11
SPEAKER_02: So it the the beige ones almost stood out more for me.
35:14
SPEAKER_02: Yeah.
35:15
SPEAKER_02: So I felt better.
35:16
SPEAKER_03: I find the beige ones quite triggering in terms of that standard hospital one I was given it had the see-through cover I could see everything and it the back of it was beige and then when I folded the outlet up it was more beige and I just think oh like if I see a beige one now I'm like oh god I don't it's do you know what for me um I don't know I'm I'm very I'm very practical I think I'm quite quite a straightforward thinker so for me the motor is absolutely great and kind of having that window or that barrier between your stoma and your clothes yeah is a lot more safety net was that a bit of an A what's it called ASMR where you I could hear the crinkle of your bag oh sorry some people might love that but I I I find I find the black kind of just gives it a bit more of a purpose.
36:12
SPEAKER_01: I mean I've always been quite straightforward a stoma bag is a stoma bag it is there to catch waste it's it's a necessity it's something that we need to use and it's great that the likes of Pelican have taken it a step further and have given you something that you actually want to wear versus something that you're forced to wear.
36:36
SPEAKER_03: Also does anyone do this when I have right when I have a Wii I still go to wipe my bum why am I doing that?
36:45
SPEAKER_03: I don't know.
36:45
SPEAKER_03: And a few people do that that I like I'm I'm not gonna say their names because maybe they're not they don't want to embarrass themselves like I just have but like it's like autopilot because I went like 26 years without a stoma because I had one from a baby had it reversed at two had another one at 30 I'm 34 now and yeah it's weird and then I'm literally going to look from the toilet why did I just wipe my bum again?
37:06
SPEAKER_03: It's like I really don't know.
37:07
SPEAKER_01: My rectum my rectum's been removed and has been for the last five years so I don't yeah but yeah it's funny in it the things you things you do I mean I've I've I found it weird obviously having that removed and it's like it's it it's it was like having to accept something new.
37:27
SPEAKER_02: I mean how did you find accepting your change and a new body and obviously a new kind of oh it's a whole new body it's a whole new body and it's not just the stoma it's the scarring as well like I've got some pretty hefty scars now that I didn't have before um I don't know how how I feel about it yet.
37:49
SPEAKER_02: I'm still I again really early days I'm still on that journey of acceptance.
37:53
SPEAKER_02: I don't I'm not there yet.
37:54
SPEAKER_01: Have you got the zipper?
37:55
SPEAKER_02: Yeah yeah and then obviously T-section scars and then do you know the two of the scars I that I dislike the most are the drain scars.
38:05
SPEAKER_01: The the two scar they don't stick then they heal from the inside out don't they?
38:10
SPEAKER_01: And you you find that when you gain and gain weight and then lose weight that they kind of become a lot more noticeable and a lot more prominent and can occasionally cause a little bit of pain.
38:19
SPEAKER_02: Yeah they've I've got three of them and I they're the ones that I because the the one down the middle is pretty obvious.
38:25
SPEAKER_02: But those two they almost look like I've had two massive spots.
38:28
SPEAKER_03: Yeah like I I've I know like if I share things I've got a similar thing so I've got the zipper scar C section like you whenever scars and I've got like this red scarring mark and it looks the same and you're like you're like oh people are gonna think I have acne on my stomach but it's not it's scarring and you're like we all match because I've got the C section yeah the zipper that's been open god knows how many times and then obviously the different the different drain sites.
38:52
SPEAKER_01: But I don't know I think sometimes you find the drain sights are more harder to accept than the actual the actual scar.
38:59
SPEAKER_02: I think that one of the worst I went through they originally tried to do keyhole surgery.
39:04
SPEAKER_02: So I've got the I had the keyhole done and they nicked my spleen the first operation which is why it then turned into open surgery.
39:11
SPEAKER_01: Um the the keyhole scars they're long gone I wouldn't even see them they've gone yeah but I've still got obviously the I think I think honestly in in people in especially with women women with Crohn's disease it seems to be more common that we don't have keyhole surgery.
39:27
SPEAKER_01: No I think because of obviously the nature of Crohn's disease and the amount of scar tissue that it produces the only way to get to anything is is to open us up but then that causes more more scar tissue once it starts healing.
39:39
SPEAKER_03: Yeah and were you was it discussed with you the repercussions of that surgery to do with scar tissues and maybe to do with your reproductive system or that because that's another thing in it we're not I mean we're not told anything about that either.
39:53
SPEAKER_02: Yeah what were your periods like after surgery?
39:56
SPEAKER_02: Bizarre.
39:57
SPEAKER_02: So I was actually on my period when I went for surgery which wasn't ideal but I wasn't going to put it off like I just mentioned it.
40:03
SPEAKER_02: They're like it's fine don't worry we can deal with that.
40:05
SPEAKER_02: So I was still bleeding when I woke up obviously then that period stopped and then it came back again and then it um disappeared and then came back again after that.
40:16
SPEAKER_02: It was it was backwards and forwards uh during hospital really strange and then it stopped the first thing that stops when I'm poorly is my is my period which is why very young they sort of said it might be quite tricky to have children because I've done a post about it recently actually like you don't if you're not having a regular period you don't know when you're regulating so you don't know when the best time to to try is it's also it's tricky you can fall pregnant accidentally because of the I think the other situation is well as what people don't realise but Crohn's can cause a lot cause a hormone imbalance.
40:46
SPEAKER_01: Yeah um I know that from personal experience um and it's it's so difficult to try and navigate having periods and a menstrual cycle and pregnancy with IBD because period the the pre-period so the week leading up to your period causes a lot of can cause a lot of pain a lot of inflammation that's an increase in fecal latter because that's all inflamed and everything else and I think it's more difficult to have a period with our with with Crohn's disease than what it is to have a period.
41:24
SPEAKER_01: It makes them heavier as well doesn't it have the but the pain.
41:26
SPEAKER_01: Yeah the pain and it's it's just absolutely crazy it's just bizarre.
41:30
SPEAKER_03: It's just a whole new level of um it's the disease that keeps on giving it keeps on doing so I mean I can't talk for that because I have Hirsprung's disease not Crohn's but I don't know is it a common trait of bowel diseases in general or is it just because Hirsprung's disease isn't similar to Crohn's at all.
41:49
SPEAKER_03: But yeah my period's dramatically changed after stoma surgery.
41:53
SPEAKER_01: They will change after the stoma surgery because of the scar tissue and everything that's built up in there it's basically changed your anatomy it's changed it it's changed the makeup of how everything works because most most women will go through life where they haven't got scar tissue they haven't had things tinkered about with they haven't had things played with their body works the way it's supposed to whereas ours doesn't because we're ill we've got inflammation our hormones are all over the shop we've got scar tissue scar tissue's killed one ovary so you've only got one functioning ovary that's producing hormones or I definitely I haven't noticed the difference since surgery since homosurgery but I think that's probably because I haven't had an all like I've never had a normal cycle it's never been so it's not going to be a massive change because I've had Crohn's but it would be good before surgery if even if they haven't got the time to give you an appointment yeah but the the problem that you've got with this is this is great for people to listen to but when you're going in to have surgery you do not want to hear this is gonna go bad.
43:02
SPEAKER_02: No I just I I don't know I wish I was told things I went into that surgery probably a little bit naive I did not think for one second A I'd be in there for a month B it would go wrong that my spleen would be nicked or and half of me is like with my with Instagram and with the a podcast.
43:21
SPEAKER_02: I don't want to scare people because people have to have these surgeries and I was probably one of the ones that it's it's it's not normal that things go the way that it did for me but also I maybe I should have been more aware that it could do that.
43:35
SPEAKER_02: It could go wrong I didn't it know the signs of sepsis.
43:38
SPEAKER_02: If I had known the signs of sepsis better would I have picked up on it myself and been like hang on a minute I think this might be sepsis what's gonna happen?
43:47
SPEAKER_01: I didn't I didn't know enough yeah but they then they're sometimes knowing too much.
43:55
SPEAKER_02: Yeah I mean it's a balance it's a hundred percent balance and but but you've got to get that balance right you can scare yourself and read all the horror stuff.
44:02
SPEAKER_03: And that's why it's good that when people do share that they can't just that you know share the good share the bad share you know because some people go through you know like Keith who we had on last time you know touch wood for him he he rock stoma life and he's never really had any problems but then there might be someone like yourself who's come up against a lot of things and I think as long as you're following a variety of people with a variety of journeys and not just following the good yeah hopefully that will provide you with some balance but yeah I think my uh my my galloys humour and um my my uh sarcastic approach to things has got me through well but if that's how you deal with it that's how you deal with it in it and it's yeah.
44:46
SPEAKER_03: So Nikki what advice would you give a newbie in accepting this stoma?
44:52
SPEAKER_02: Um I knew this question would come up um and it's a really tricky one for me to answer because I don't have the answers.
45:00
SPEAKER_02: I'm still on that journey.
45:01
SPEAKER_02: It is a long journey and all I would say is that journal things, write things down and just reach out to people because I've never been in a room with two other women with stomas.
45:14
SPEAKER_02: So reaching out to you guys it helps.
45:16
SPEAKER_02: People un like people understanding your situation um yeah reach out to people and reach out to your family and friends because they will try to understand um and just keep going.
45:28
SPEAKER_02: But it does it will I know it'll get easier.
45:29
SPEAKER_02: I look at you guys and I think obviously with your situation at the moment with how poorly you're being but I know that it will get easier and acceptance is it's a journey and that's just what I'm doing at the moment.
45:40
SPEAKER_01: It is a journey it will always be a journey I mean I've storming I want for nearly 14 years and that there are times when I'm either love it or loathe it.
45:52
SPEAKER_03: It seems a bit like going through the Grinch Nikki thank you so much for coming all this way.
46:00
SPEAKER_03: It's been lush talking to you and seeing you in person and thank you for everything you're doing for newbies because you know no one has to share their lives today no one has to share what they're going through so uh we think you're amazing thank you and uh apologies that me and Rachel just like randomly flashing you as diamond bags yeah to be fair Nikki was granted the honour of seeing our bags before and we've never done that with a guest before so sharing is sharing it is yeah thank you for listening to Beyond the Pouch and we hope you've taken something valuable from this conversation and we'll see you next time