Latest / Beyond the Pouch / E13: Jennie's Inspiring Pregnancy Journey with a Stoma

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E13: Jennie's Inspiring Pregnancy Journey with a Stoma · Beyond the Pouch

• 0:00
  SPEAKER_00: One of your main symptoms from that was that you your hair was falling out in clumps, wasn't it?
• 0:05
  SPEAKER_00: It was just everything all came to a head at that point, which is why my hair started falling out.
• 0:10
  SPEAKER_00: And I thought, well, it's falling out anyway, so let's raise awareness about it.
• 0:14
  SPEAKER_00: Those six months post- a not pleasant old day because it was basically like I was on a permanent period.
• 0:19
  SPEAKER_00: Yeah, I was just having lots of discharge and lots of blood.
• 0:22
  SPEAKER_00: How did you find putting a bag on with that then?
• 0:24
  SPEAKER_00: Oh, it was just painful, absolutely painful.
• 0:26
  SPEAKER_00: I would not be here if it wasn't for my stoma.
• 0:32
  SPEAKER_01: Welcome back to Beyond the Pouch.
• 0:34
  SPEAKER_01: Today I am buzzing to welcome our genuine friend, both to both of us, Jenny, who won the competition on Insta.
• 0:43
  SPEAKER_01: Welcome, Jenny.
• 0:44
  SPEAKER_01: Hi.
• 0:44
  SPEAKER_01: So nice to see you on the same.
• 0:46
  SPEAKER_01: We've literally known her to speak to like for nearly 10 years.
• 0:52
  SPEAKER_01: How mad is that?
• 0:52
  SPEAKER_01: And now you are here in real life.
• 0:55
  SPEAKER_02: When I think about the amount of stuff that I've done with you for like podcasting, recording and videos for YouTube.
• 1:01
  SPEAKER_02: They were like, we meet face to face and we're my face to face until now.
• 1:05
  SPEAKER_02: Yeah, we're we might have messaged you yesterday.
• 1:08
  SPEAKER_02: It's like, after you've had tea, do you want to pop up?
• 1:12
  SPEAKER_01: So today you're gonna share with us the importance of advocating for yourself and your pregnancy journey.
• 1:18
  SPEAKER_01: So we were pregnant at the same time back last year.
• 1:21
  SPEAKER_01: So I think I shared that I was, and then you messaged me within seconds going, me too! And I was like, oh my god.
• 1:30
  SPEAKER_00: I think all the Rick knew at that point.
• 1:31
  SPEAKER_00: I was like, oh my god, I still have anything.
• 1:33
  SPEAKER_01: Yeah, yeah, yeah.
• 1:34
  SPEAKER_01: And then we've called our kids almost the same name.
• 1:38
  SPEAKER_01: And that wasn't on purpose, we're not weird or anything.
• 1:41
  SPEAKER_01: Um but yeah, it's so lush to have you here, and you've you have been through a lot.
• 1:46
  SPEAKER_01: Like I messaged you last night, didn't I?
• 1:48
  SPEAKER_01: And I was like, my god, like there's a lot to cover.
• 1:52
  SPEAKER_01: You've but look at you, you are full of but you are exactly what you come across like online, which is you're so bubbly.
• 2:00
  SPEAKER_01: I feel like you're vibing like a s you're a bit netty in a good way.
• 2:04
  SPEAKER_02: Like it was funny last night because you were sitting down the bottom of my bed.
• 2:07
  SPEAKER_02: I was like, come on, just come and catch up on the bears.
• 2:09
  SPEAKER_02: I didn't know I for sure.
• 2:11
  SPEAKER_00: I was just like, I wanted to, but I was like, I I need to wait.
• 2:16
  SPEAKER_01: How long is it suitable until I start doing that?
• 2:20
  SPEAKER_01: But um, so your your story started back in 2018.
• 2:24
  SPEAKER_01: Yes.
• 2:25
  SPEAKER_01: Would you like to?
• 2:27
  unknown: Yeah.
• 2:28
  SPEAKER_00: So I was having problems for a while, but I I didn't know what it was.
• 2:32
  SPEAKER_00: I put it down to the fact that I had anxiety.
• 2:34
  SPEAKER_00: Um I just recently had JJ in 2016 and I started having problems with my bowels, um, going to the toilet a lot, pain.
• 2:42
  SPEAKER_00: I put it down to the fact that I had anxiety, because that's what happens when you've got anxiety, you go to the toilet a lot.
• 2:48
  SPEAKER_00: I didn't think anything else because I didn't know anything about Crohn's ultra ticklitis, had no idea about anything like that.
• 2:53
  SPEAKER_00: Um I got pregnant and I unfortunately suffered a miscarriage in 2017, just a year after JJ was born.
• 3:01
  SPEAKER_00: Um, and after that I had non-stop problems, so it was week in, week out.
• 3:05
  SPEAKER_00: I was having loose vowels and pain and things like that.
• 3:09
  SPEAKER_02: Is that when you had to have the DNC?
• 3:11
  SPEAKER_00: Yes, so I had to have a basically a miscarriage.
• 3:14
  SPEAKER_00: So it got to the point where I knew I was pregnant.
• 3:16
  SPEAKER_00: I had a bit of spotting at the beginning, and I just thought that was normal, went to get checked out, they told me everything was fine.
• 3:21
  SPEAKER_00: Um that four weeks later I went for a scan just to check up and everything, and unfortunately, the baby had never had a heartbeat, so it was still there, but it was never a fully viable baby.
• 3:33
  SPEAKER_00: So unfortunately, I had to have a DNC at that point.
• 3:35
  SPEAKER_00: Um my mum's a hairdresser, and she I was very nervous about her telling people, so I was like, please don't tell anybody, and this is where I thought the anxiety had come from because she was due to get married in October, and I thought I'm gonna go to her wedding, and everyone's gonna know, and I don't want anyone to know.
• 3:49
  SPEAKER_00: She hadn't told anybody, but in my head I'd built it up to be in such a massive thing.
• 3:53
  SPEAKER_02: But the problem that you've got, obviously, with regards to us, because you're like me, you've got Crohn's disease, and there are just times when sadly it's not viable or healthy or safe for us to be able to continue with the pregnancy.
• 4:11
  SPEAKER_02: And the problem that you've got, if you didn't have that DNC, you'd have ended up with an infection which would have led on to further complications and everything else.
• 4:20
  SPEAKER_00: And this was prior to the fact that I knew I had Crohn's.
• 4:22
  SPEAKER_00: I had no idea at this point, but I just thought it was anxiety.
• 4:26
  SPEAKER_00: I know it was got it got to March in 2018 where I was like, this is really, really bad.
• 4:32
  SPEAKER_00: And I was eating things, but I wasn't able to keep anything down, and I I found out I was pregnant again in the March.
• 4:40
  SPEAKER_00: Um, and then I went to the doctors three or four times throughout that week, and I said, Look, I've I've got these pains, I'm really sore, I'm going to the toilet all the time.
• 4:47
  SPEAKER_00: I feel like I've got no energy whatsoever.
• 4:49
  SPEAKER_00: As soon as I eat something, it's either coming up or coming back out straight away.
• 4:53
  SPEAKER_00: And I can't, I can't cope, I don't know what's going on, found out I was pregnant.
• 4:56
  SPEAKER_00: I thought this is it now, I need to sort something out because I've not eaten or drank for properly for about three weeks.
• 5:01
  SPEAKER_00: And if I'm not getting any nutrients, this baby's not getting any nutrients either.
• 5:04
  SPEAKER_00: And having suffered another loss previously, I was like, I need to get this sorted out.
• 5:09
  SPEAKER_00: Um, and then that's when I ended up getting a bit into the hospital because I'd started bleeding, and because I'd been to the doctor's backwards and forwards, and he just said I had gastroenteritis and it was nothing serious, it's fine.
• 5:20
  SPEAKER_00: I put off going to the doctors or the hospital because I thought, well, they're just gonna tell me the same thing, so what's the point?
• 5:25
  SPEAKER_00: Um, had they have not said that, I'd have gone to the hospital much sooner.
• 5:29
  SPEAKER_00: And I didn't.
• 5:30
  SPEAKER_00: Do you feel as a patient with Crohn's disease that we get gaslighted?
• 5:34
  SPEAKER_00: Yes, I did.
• 5:35
  SPEAKER_00: A lot.
• 5:35
  SPEAKER_00: At that point I did, and that's why whenever I've had any situations since I'm going, nope, I'm not leaving until you've sorted something out.
• 5:42
  SPEAKER_00: I've been in a hospital situation where I'm still experiencing pain after my stoma, after I've had a stoma done, and he's going, You don't even have Crohn's, and I'm like, Yes, I do.
• 5:50
  SPEAKER_00: Like, you have a look at my notes, you can see all of the stuff that I've been through previously.
• 5:55
  SPEAKER_00: I'm not leaving here until we've got something else.
• 5:57
  SPEAKER_00: My blood might be fine, my stool samples might be fine, but you need I need something further, like a further investigation to find out what's going on with this pain because I'm experiencing a lot of pain.
• 6:05
  SPEAKER_00: They ended up giving me an endoscopy, and that's when they found out I had Crohn's in my stoma.
• 6:10
  SPEAKER_00: So I was like, I knew, I knew something was wrong, but on the face of it, it doesn't look like it because all the tests come back out.
• 6:17
  SPEAKER_02: Because when when when we go back to your initial diagnosis, and then we go back to so it was you had the first miscarriage in like 2017.
• 6:27
  SPEAKER_02: 2017.
• 6:28
  SPEAKER_02: Then 2018 was when your Crohn's got really, really bad and you got admitted to hospital, and your one of your main symptoms from that, even though your bloods were coming back relatively normal then, was that you your hair was falling out in clumps, wasn't it?
• 6:46
  SPEAKER_02: And you it you shaved your hair off for charity.
• 6:50
  SPEAKER_02: But you were so heartbroken but so brave at the same time in that video.
• 6:56
  SPEAKER_02: I was because I've watched it a few times and it always absolutely breaks my heart because as a woman, our hair is like attached to our femininity, so it doesn't matter if we're missing body parts, your hair is like your crown in glory, isn't it?
• 7:15
  SPEAKER_00: For some people.
• 7:16
  SPEAKER_00: And I was always known for my hair because it's wild, it's ginger, it's curly, it's it's always been a big, big Afro hair.
• 7:24
  SPEAKER_00: And the fact that it was falling out and it was very thin.
• 7:26
  SPEAKER_00: Every time I woke up in the morning and I saw it on my pillow, and it was down to the fact that I hadn't had any nutrients for a while, I'd had my surgery, I'd had a miscarriage, I'd had another miscarriage, sorry, shortly after.
• 7:38
  SPEAKER_00: Um and it was just everything all came to a head at that point, which is why my hair started falling out.
• 7:44
  SPEAKER_00: And I thought, well, it's falling out anyway, so let's raise awareness about it, instead of me coming out and going, This is what's happened to me, and I've got nothing really to show, because I wasn't very comfortable showing anything off at that point.
• 7:54
  SPEAKER_00: I thought I'm gonna shave my hair and show it off that way and say, This is what Crohn's and colitis does.
• 7:59
  SPEAKER_00: Because I'm thinking of here, you you're you're like me, aren't you?
• 8:02
  SPEAKER_02: You're p your perianal per uh perianal Crohn's disease.
• 8:06
  SPEAKER_02: Yeah.
• 8:07
  SPEAKER_00: Originally it was Crohn's colitis, then they took my large colon away, and then I had it in my small um my small intestine, like in the alias bit.
• 8:15
  SPEAKER_00: And then they took out the ileus and refashion tristoma.
• 8:18
  SPEAKER_00: And then I had my and then it was a protectomy, because I had it in my anal.
• 8:23
  SPEAKER_02: And how did you feel with regards to the protectomy surgery?
• 8:27
  SPEAKER_02: Because I remember you messaging me and you're going, is this right?
• 8:31
  SPEAKER_02: And I'm like, and you were still in hospital at the time, wasn't you?
• 8:33
  SPEAKER_02: And I was like, that's not right.
• 8:35
  SPEAKER_02: You need to talk to the doctor or the nurse, you need to get that sorted.
• 8:38
  SPEAKER_02: Yeah.
• 8:39
  SPEAKER_02: Because you had a load of fluid buildup, didn't you?
• 8:42
  SPEAKER_02: Because you didn't have drains in.
• 8:43
  SPEAKER_02: And if I remember rightly, didn't that reopen your protectomy wound?
• 8:46
  SPEAKER_00: No, luckily, my wound has stayed shut.
• 8:51
  SPEAKER_00: Luckily, I thought it would have opened it up, but it didn't, it it stayed shut.
• 8:55
  SPEAKER_00: Um what happened was when I came out of hospital, I it was basically like I was on a permanent period.
• 9:00
  SPEAKER_00: Yeah, I was just having lots of discharge and lots of blood, and it I just thought, this is something's not right here.
• 9:05
  SPEAKER_00: Like it's not quite right.
• 9:07
  SPEAKER_02: Those six months post-op are not pleasant, are they?
• 9:10
  SPEAKER_02: Because there's only one exit.
• 9:12
  SPEAKER_02: Because you've had that take because you've had your rectum taken away, anything that is left in you after the surgery is literally making its way out via everywhere, anywhere.
• 9:23
  SPEAKER_02: Via the the the lady garden and the smells that are attached to it, and then you're going to the GP and they're going, Well, here's a swab, but you need to go and swab yourself in the bathroom.
• 9:35
  SPEAKER_02: How am I gonna swab myself in I don't know where to put it to Wheeler?
• 9:40
  SPEAKER_02: And they're telling you like for vac oh is it bacterial vaginosis, wasn't it, they check you for?
• 9:45
  SPEAKER_02: And then you've got the recurrent UTIs after then as well because of everything.
• 9:49
  SPEAKER_02: It's just not it's not nice.
• 9:52
  SPEAKER_00: No.
• 9:52
  SPEAKER_00: No, it wasn't nice.
• 9:53
  SPEAKER_00: I ended up back in hospital after I had my pratectomy in November and ended up back in hospital in February because I thought I had a blockage.
• 10:00
  SPEAKER_00: Um it turns out the fluid that was in my rectum where my rectum would be, my small bowel had dipped and it was wrapped around it, which had stopped my small bowel from working, which is why my stoma wasn't working, and that's why I was experiencing a lot of pain.
• 10:13
  SPEAKER_00: Um, and I was just like, I can't believe I'm in hospital again.
• 10:17
  SPEAKER_00: Luckily, that's the last time I've been in hospital in 2020.
• 10:21
  SPEAKER_02: You had a lot of issues with your stoma, didn't you?
• 10:23
  SPEAKER_02: Because you had the ulcers on the outside because we were sending each other photos, and she's going to me.
• 10:30
  SPEAKER_00: This isn't right.
• 10:31
  SPEAKER_00: This isn't right.
• 10:32
  SPEAKER_02: And I was like, How long have you had them for?
• 10:35
  SPEAKER_02: Well, I noticed them a couple of weeks ago, but they keep going away and bringing back mates.
• 10:40
  SPEAKER_00: Yeah, they start off like little black pimples and then they go away and then they come back and they'll wank, and then they'd be really painful.
• 10:46
  SPEAKER_00: And I'm like, oh.
• 10:48
  SPEAKER_00: Then you should find putting a bag on with that then.
• 10:51
  SPEAKER_00: Oh, it was painful, absolutely painful.
• 10:53
  SPEAKER_00: You'll see in my like history history of my stories on Instagram.
• 10:56
  SPEAKER_00: I ended up just sitting there sometimes without a bag on because I thought I can't put a bag on because every time I eat, but you obviously stoma moves anyway when you're eating.
• 11:04
  SPEAKER_00: I can feel everything.
• 11:05
  SPEAKER_00: I can feel everything moving, I can feel stoma moving, I can feel everything coming out of it, and I'm like, oh my god, something's not right.
• 11:12
  SPEAKER_00: And that's when I sat in that office.
• 11:13
  SPEAKER_00: I went to go and get my blood checked, and two hours later it'd come back and he went, Yeah, your bloods are fine.
• 11:17
  SPEAKER_00: I went, right, okay, I'm not leaving because there's something off, there's something wrong here.
• 11:20
  SPEAKER_00: I'm showing you these, there's something wrong.
• 11:22
  SPEAKER_00: And it got to the point where my consultant actually did my scope himself.
• 11:26
  SPEAKER_00: He probably thought, Yeah, I'm gonna catch you out here.
• 11:29
  SPEAKER_00: There's nothing wrong with that.
• 11:29
  SPEAKER_00: And he looked at it and went, Oh yeah.
• 11:31
  SPEAKER_00: I went, See, I told you.
• 11:33
  SPEAKER_01: Yeah, but like thank God you were that type of person because I think more often than not people wouldn't say that, would they?
• 11:43
  SPEAKER_01: They wouldn't do that.
• 11:44
  SPEAKER_01: They wouldn't because I I know like I have to advocate a lot for my boys in terms of all things stomas.
• 11:50
  SPEAKER_01: And y you do feel in in that moment I think, oh, if I crossed the line, oh, should I have said that?
• 11:55
  SPEAKER_01: But you have to, you haven't got a choice, because if you don't, you won't get answers, you won't get anywhere, and you the suffering will not stop.
• 12:02
  SPEAKER_00: Yeah.
• 12:02
  SPEAKER_00: And I always think back to that time in 2018 when I was sat there.
• 12:06
  SPEAKER_00: I remember sitting on the toilet and I was bleeding, and I thought, I need to go to AE, but the doctor said I'm fine, so I'm not going.
• 12:12
  SPEAKER_00: And I think I should have gone then.
• 12:14
  SPEAKER_00: I should have gone then.
• 12:14
  SPEAKER_00: I I know I went to the walking centre the next morning, but it was another 12 hours.
• 12:19
  SPEAKER_00: Uh what if I'd what what if them 12 hours meant anything?
• 12:22
  SPEAKER_00: They probably didn't, but at the same time, what if I'd something could have happened that made me feel a bit better?
• 12:26
  SPEAKER_00: Uh who's to know?
• 12:27
  SPEAKER_00: I don't know.
• 12:28
  SPEAKER_01: And you know when you go to these places you're gonna be sat there for maybe 12 hours before you re-write that.
• 12:33
  SPEAKER_01: Yeah.
• 12:34
  SPEAKER_02: It's I I think I think the thing is is like when you're first diagnosed with Crohn's, you're like, oh, what is it?
• 12:39
  SPEAKER_02: How is it?
• 12:40
  SPEAKER_02: And it's not until you start looking into it and obviously Crohn's is literally your entire body.
• 12:46
  SPEAKER_02: So because me and Jen were talking about this, because we've both got folliculititis, so because we've had our large bowels removed and because we've got a stoma, our Crohn's as an autoimmune disease, because we haven't got the large bow anymore that's kick to kick off, it's doing it with your body, and like we were saying about we get like so like my arms, I keep getting like little ulcers that pop up on my arm and then they go down, and then I get left with scars on my arm, but Jenny's got it on her legs.
• 13:18
  SPEAKER_00: I I thought I was I thought I had like um I thought I had like little bites on my legs because obviously once you get pregnant your skin's all over the place anyway.
• 13:26
  SPEAKER_00: So I'd had Remy and then I thought I'm getting bitten here.
• 13:29
  SPEAKER_00: Like people the the bugs just might migrate to my skin, but then I thought Rick's not getting bitten, JJ's not getting bitten, Louise isn't getting bitten, so I don't understand where this is coming from.
• 13:37
  SPEAKER_00: And then I spoke to Louise last night and she was like, that's what it is.
• 13:39
  SPEAKER_01: I thought that's weird because I've been getting the same, but I just assumed but I don't have Crohn's.
• 13:44
  SPEAKER_02: Yeah, but Herschwand's is still an autoimmune issue.
• 13:48
  SPEAKER_00: Oh, that's weird.
• 13:49
  SPEAKER_00: It's weird, isn't it?
• 13:51
  SPEAKER_00: And the more you the more you look into it, the more things you think, oh that's related to Crohn's.
• 13:55
  SPEAKER_00: Because obviously I don't have my large bowel anymore, so I suffer from mouth ulcers a lot because it affects my mouth, because that's the only place it could possibly affect, really, at the minute.
• 14:03
  SPEAKER_00: Um then sometimes I've I've got a little bit of a pyoderma, so it's affecting my skin as well.
• 14:08
  SPEAKER_00: How are you with the pyoderma?
• 14:10
  SPEAKER_02: Because i pyoderma's not pleasant.
• 14:14
  SPEAKER_02: It's not, I think I could.
• 14:16
  SPEAKER_01: Can you explain what it is for the people who don't know?
• 14:19
  SPEAKER_01: Me included.
• 14:20
  SPEAKER_00: The way I got to describe it is like basically Crohn's that's affecting your skin.
• 14:23
  SPEAKER_00: So I it started as like a little rash, no, when you get like sore skin around your stoma, it started out like a bit of a red, red bit, and then as I kept looking at it, the it was pulling apart.
• 14:33
  SPEAKER_00: So it's basically my skin was coming apart.
• 14:35
  SPEAKER_00: So I've got like a little tiny hole underneath where my stoma sits that was getting bigger.
• 14:41
  SPEAKER_00: But I went to my stoma nurse as soon as I saw it, and she gave me some um like steroid tape to put on top.
• 14:46
  SPEAKER_00: So luckily, touch wood, hopefully I've caught it early, and I've not had any issues since, and that was about three years ago, four years ago.
• 14:53
  SPEAKER_00: Um but I've had used to use that, but it got to the point where I was using that so much, it was making my skin even thinner.
• 14:58
  SPEAKER_01: So, what seals do you use then?
• 15:00
  SPEAKER_00: Eacon ones, no.
• 15:01
  SPEAKER_01: The free seals?
• 15:02
  SPEAKER_01: The free seals.
• 15:02
  SPEAKER_01: Yeah, the free seals.
• 15:03
  SPEAKER_01: You use that as well, don't you?
• 15:05
  SPEAKER_02: That is honest to God, that is my safety blanket.
• 15:08
  SPEAKER_02: Anywhere I go, I've got the free seal is on me.
• 15:12
  SPEAKER_02: I just can't I just can't, I cannot without the without the barrier ring, without the free seal, my bag would be coming off because my output's that watery, it just breaks down my base plate and my skin breaks down.
• 15:25
  SPEAKER_02: It's it's a case of if it's not broken don't fix it.
• 15:30
  SPEAKER_02: So the free seal works for me.
• 15:32
  SPEAKER_02: Sometimes I have to go back to the thicker one because I was explaining to you guys earlier because of the scar tissue in the cyst.
• 15:38
  SPEAKER_02: Sometimes when the cyst is spasming and it pulls on my stoma, it's pulling my stoma back in, but it's also dipping my skin back in.
• 15:44
  SPEAKER_02: So sometimes my base plate lifts.
• 15:47
  SPEAKER_02: So if I'm if I change my bag and I've noticed it's dipped in, I'll put the thicker barrier ring on.
• 15:54
  SPEAKER_01: Um but it's not a seal isn't something you're told about when you first have surgery, it's not I mean, I know like that you know, you tried you're you're given as little things as possible to deal with, aren't you?
• 16:05
  SPEAKER_01: Which is fair enough.
• 16:06
  SPEAKER_01: But when you ha use a seal and you see the benefits, if that is what you needed, it's hard to imagine going back, isn't it?
• 16:14
  SPEAKER_01: And not using one.
• 16:15
  SPEAKER_01: Like I can't imagine my bag staying on without a seal now.
• 16:19
  SPEAKER_01: Like I've used them for years.
• 16:20
  SPEAKER_01: Like I again, it's safety nice.
• 16:23
  SPEAKER_02: Do you remember my history of the stoma?
• 16:25
  SPEAKER_02: Mm-hmm.
• 16:25
  SPEAKER_02: The the the blog post.
• 16:27
  SPEAKER_02: Yes.
• 16:28
  SPEAKER_02: You think back to what they used to use then versus what we've got now is two completely different worlds.
• 16:34
  SPEAKER_02: Yeah, it's definitely a long, a long way.
• 16:36
  SPEAKER_02: Could you imagine sitting there with a with a tuna can strapped strapped to your stomach?
• 16:41
  SPEAKER_01: Just imagine what they're gonna have like when you know the babies are our age.
• 16:46
  SPEAKER_01: What what is gonna be around then?
• 16:48
  SPEAKER_01: It blows my mind to think.
• 16:49
  SPEAKER_02: Yeah, but it still happens in other countries, so even places like France and things like that, people are using carrier bags and typing them to the stomach because they do not have the money to be able to afford to buy stomach bags.
• 17:00
  SPEAKER_02: We are incredibly lucky in the UK.
• 17:02
  SPEAKER_02: Very incredibly lucky.
• 17:03
  SPEAKER_00: But everything gets paid for with like a prescription, isn't it?
• 17:05
  SPEAKER_00: So Yeah.
• 17:06
  SPEAKER_01: I mean and with the with baby Remy, so she was born the same month as my baby Wren Um in March this year.
• 17:14
  SPEAKER_01: So pregnancy-wise, how did you feel?
• 17:17
  SPEAKER_01: Because I think pregnancy over stoma, there's there's mixed stories, aren't there?
• 17:22
  SPEAKER_01: It's it's not the same answer fits all, is it?
• 17:24
  SPEAKER_00: Physically, I was absolutely fine.
• 17:27
  SPEAKER_00: Mentally, I was shot.
• 17:29
  SPEAKER_00: When I first found out I was pregnant, I thought, oh my god, like because I'd had a couple of losses before, I was preparing myself just in case there was another loss, which was hard, very, very hard.
• 17:38
  SPEAKER_00: And then it won once you pass a certain point you get excited.
• 17:42
  SPEAKER_00: Um the main issue that I had with mastoma when I was pregnant is just that it got fatter and I had to recut my rings a bit.
• 17:49
  SPEAKER_01: In it mad seeing it, like Yeah It's very it's a lot bigger, it swells a bit.
• 17:54
  SPEAKER_00: Um but luckily I had no issues when I was pregnant.
• 17:58
  SPEAKER_02: This is the thing though, people people don't realise like weight gain, weight loss, fluid intake versus fluid restrictions, pregnancy, that all affects the shape of your stoma because it's crazy because everyone goes to me, oh your stoma's so tiny.
• 18:15
  SPEAKER_02: I can't help that my stoma's tiny.
• 18:18
  SPEAKER_02: I can't help the size of my bowel.
• 18:20
  SPEAKER_00: Yeah.
• 18:21
  SPEAKER_00: Normally, normally mine is really, really sm like skinny, but as I was as my preg pregnancy was progressing, it was getting bigger and bigger and bigger.
• 18:29
  SPEAKER_01: I had to change bag size because I I would I'd have them up to 45 mil ring respond like, yeah, this isn't gonna work anymore.
• 18:37
  SPEAKER_01: Whack it up to 60 mil.
• 18:39
  SPEAKER_01: No, it was a beast by the end.
• 18:42
  SPEAKER_01: What were you given in terms of advice, if any, of how you know you you might have to adapt with your stoma?
• 18:50
  SPEAKER_01: Because I know I I wasn't told or given any advice, anything what possibly could happen, nothing.
• 18:56
  SPEAKER_02: What we know You were you didn't have a stoma nurse assigned to you like when you were pregnant.
• 19:01
  SPEAKER_02: No, I didn't.
• 19:02
  SPEAKER_01: Not many no one I know did at the time.
• 19:05
  SPEAKER_01: There's a few of us, weren't there, that were pregnant at the same time.
• 19:07
  SPEAKER_01: I think I know knew you and two other women at the same time.
• 19:11
  SPEAKER_01: Um and I was asking you all the same questions, and none of us were given anything.
• 19:17
  SPEAKER_00: I never got I never got assigned a stoma nurse.
• 19:19
  SPEAKER_00: Luckily, I work in the hospital and my office was just down the the corridor of my own stoma nurse.
• 19:24
  SPEAKER_00: And I got on really, really well with them.
• 19:25
  SPEAKER_00: So when I first found out I was pregnant, I went and showed them the scan and they were buzzing, they were dead excited because it's the first one of their first patients that they've known that they were pregnant, so they were buzzing.
• 19:35
  SPEAKER_00: So it's basically my my baby and their baby.
• 19:38
  SPEAKER_00: So any updates that I got.
• 19:40
  SPEAKER_00: So when I found out she was a girl, I ran in and showed them it was a girl, and and when we had our stoma meeting, we have a regular stoma meeting like every three months, and I'd I'd just had Remy probably like two weeks before, and I didn't tell him if I was going or not, because I wasn't sure if I was gonna make it or not, and I ended up turning up and surprising them and they were buzzing.
• 20:01
  SPEAKER_00: Unfortunately, I had someone from Pelican come in to talk, and they had to sneak out this while someone was talking.
• 20:08
  SPEAKER_00: I was like, no, just stay there.
• 20:09
  SPEAKER_00: And I'll call I'll I'll when this thing was finished, I'll come in.
• 20:13
  SPEAKER_02: How did you find obviously the the birth?
• 20:17
  SPEAKER_02: Because you're the same as me, your cervix doesn't play.
• 20:21
  SPEAKER_00: No, and that's looking back, I had to have a C-section with JJ.
• 20:25
  SPEAKER_00: This was before pre-crohnes, pre-stoma, pre-everything.
• 20:28
  SPEAKER_00: My cervix didn't dilate at all.
• 20:31
  SPEAKER_00: And it actually went backwards.
• 20:32
  SPEAKER_00: So they when I went in to see if because I was in active labour, I was in active labour for three days.
• 20:38
  SPEAKER_00: When I went in to see if they could keep me in and I could have my baby, she ended up sweeping me and making me three centimetres.
• 20:44
  SPEAKER_00: After about two hours, they checked me again and I'd gone down to two.
• 20:47
  SPEAKER_00: So I actually went backwards.
• 20:49
  SPEAKER_00: So it was really, really frustrating because I'd been in Labour for so long with JJ.
• 20:54
  SPEAKER_00: They ended up the point where they just said, We need to give her a C-section.
• 20:56
  SPEAKER_00: We'll have a C-section, which I wasn't bothered about.
• 20:58
  SPEAKER_00: As long as he's happy and healthy, it's fine.
• 21:00
  SPEAKER_01: So was it emergency or did you ask Emergency with JJ?
• 21:03
  SPEAKER_00: Um, this is why when Remy came along, I thought there's no point in me even chancing Labour, no point.
• 21:09
  SPEAKER_00: I obviously got advised either way.
• 21:11
  SPEAKER_00: Said you could try a V back if you wanted to, and I thought, well, no, I don't I think I'm gonna end up in the same position because my diagnosis hasn't changed, I've still got Crohn's.
• 21:19
  SPEAKER_00: It's probably a bit more scar tissuey in there as well.
• 21:22
  SPEAKER_00: So I'd rather just go for the C section, and it's a week early, and going down was the most nerve-wracking thing, even though it was totally different.
• 21:31
  SPEAKER_00: It was an emergency, you don't have to think about it, it just gets done.
• 21:34
  SPEAKER_00: The planned section, I was thinking about it for a week and a half before and going, Oh, yeah, I don't think I can do this.
• 21:39
  SPEAKER_00: I don't think I can do this, even though I've done it before, it's happened before, and I've had worse surgeries.
• 21:42
  SPEAKER_01: There's a big gap, so is it eight years between JJ and Ren?
• 21:46
  SPEAKER_01: Because it's the same between Jake and Ren.
• 21:49
  SPEAKER_01: And ours was planned as well, but still, yeah, it's it's it's nerve wracking.
• 21:53
  SPEAKER_00: Absolutely nerve wracking because you sat there thinking, oh, I'm gonna be awake.
• 21:57
  SPEAKER_00: And all the surgeries that I've been in, I've been asleep.
• 21:59
  SPEAKER_00: I don't know.
• 22:00
  SPEAKER_00: Oscar, where when when you had your C section, was your surgeon there?
• 22:03
  SPEAKER_00: My colorectal surgeon, no.
• 22:05
  SPEAKER_01: No, mine wasn't.
• 22:06
  SPEAKER_00: He was supposed to be.
• 22:07
  SPEAKER_00: Or there was supposed to be a core colorectal surgeon there, but no.
• 22:11
  SPEAKER_01: Were you because I was told that they'll have someone that they can call if they need to bring them in.
• 22:17
  SPEAKER_01: Yeah, they said that, so I'd I'd like to think that was true.
• 22:20
  SPEAKER_01: Yeah, but I know because you think if something had happened, because we were both bowel-wise, we didn't need anything, did we?
• 22:26
  SPEAKER_00: But yeah, I wonder how quickly they would have to that's why they tried to make it planned, so it was during the day.
• 22:32
  SPEAKER_00: I was the last one, just in case it needed to go on for longer, you know what I mean?
• 22:38
  SPEAKER_02: Was yours any longer than a normal C-section?
• 22:41
  SPEAKER_02: No.
• 22:41
  SPEAKER_00: No.
• 22:42
  SPEAKER_00: I was probably she was born at quarter to twelve.
• 22:45
  SPEAKER_00: I probably went down at half at quarter past twelve quarter past eleven, and they started doing it at half twelve.
• 22:51
  SPEAKER_00: W when they sewed me up and everything, they were like, Yeah, you've got quite a lot of adhesions in there.
• 22:55
  SPEAKER_00: I was like, Yeah, I thought so.
• 22:58
  SPEAKER_00: But it was just it was nice to have that clarification because obviously when you're experiencing pain, you're thinking, what is that pain?
• 23:03
  SPEAKER_00: And it was when she was growing, I was experiencing a lot of stretchy pains, and that's obviously what it was.
• 23:09
  SPEAKER_01: Yeah, did you get the sh the because I I got a lot of like sharp, short pains at the very start, which scared me.
• 23:17
  SPEAKER_01: I think we went back and forth uh like you know, prenatal checks and all that, thinking, oh my god, something must be wrong, something and they were like, No, it's your scar tissue.
• 23:26
  SPEAKER_01: Yeah, it's it's literally pulling on your scar tissue.
• 23:28
  SPEAKER_01: So it took a it took me a at least a month to kind of accept, right, okay, to know the difference between that pain and if it was possibly something else.
• 23:36
  SPEAKER_01: But scary because you've got to trust your instincts.
• 23:38
  SPEAKER_01: Like, what if I'm wrong and there is something wrong and you know it's it oh it's a lot of pressure while the blokes sat there.
• 23:45
  SPEAKER_01: I know, yeah.
• 23:45
  SPEAKER_01: Well it's it's totally oblivious.
• 23:47
  SPEAKER_01: Pain again.
• 23:47
  SPEAKER_01: Ah, sorry, sorry.
• 23:48
  SPEAKER_01: How was your C-section, Rage?
• 23:51
  SPEAKER_01: Um, yeah, I mean they said there was a lot of dense scar tissue, but I knew that because of the pains I was having at the start.
• 23:58
  SPEAKER_01: Um yeah, it was very different for me because baby obviously we knew it was a 90 whatever percent chance they were gonna be born with Hirsprungs and need a stoma, so it was all planned that they got him out, dad held him, I had him on my chest for five minutes, then he had to go straight to NICU.
• 24:16
  SPEAKER_01: So it was never gonna be the magical, oh baby, cutches, breastfeed.
• 24:22
  SPEAKER_01: It was never gonna be like that.
• 24:24
  SPEAKER_01: And it wasn't like that with my eldest, but but we knew that, so we mentally prepared ourselves.
• 24:29
  SPEAKER_02: Did you feel that you had an easier journey with Ren?
• 24:35
  SPEAKER_01: No No, not at all.
• 24:38
  SPEAKER_01: It's uh no, because there was a lot of so when a baby's born with Hirschsprungs, they like to see they there's no way of knowing how much of the intestine is affected.
• 24:49
  SPEAKER_01: So me me and Jake, it was all our colon and a bit of our small.
• 24:54
  SPEAKER_01: So they said, well, it's more than likely gonna be the same, but they've got to give the babies a chance to feed, see if they can pass waste, see how they cope with it, see if they get poorly.
• 25:03
  SPEAKER_01: So unfortunately, you have to see your baby get sick before they can then make the call right.
• 25:09
  SPEAKER_01: Yes, surgery is right, because you don't want to give a baby surgery when they're newborn for no reason, do you?
• 25:14
  SPEAKER_01: So that's you know and there was, you know, we couldn't we didn't get the cuddles and the skin to skin and the we didn't get to hold him.
• 25:24
  SPEAKER_01: We we well, Luke had him for like maybe ten minutes, I had him for like five, but I was out of it and I wasn't well with the drugs and all that.
• 25:32
  SPEAKER_01: So you just don't get that initial bonding experience that you think about.
• 25:39
  SPEAKER_01: But then I I don't seem to be able to produce children that aren't poorly, so I I wouldn't know any difference.
• 25:44
  SPEAKER_01: So I don't know.
• 25:46
  SPEAKER_01: I yeah.
• 25:46
  SPEAKER_01: But then also it makes you think, oh, if we went for a a third, would it happen again?
• 25:53
  SPEAKER_01: Like, mmm, it it does it like you know who knows.
• 25:56
  SPEAKER_02: I was gonna say though, uh Jake's journey versus Wren's journey, though, there there's been two there's bit there's been a bit of a difference, hasn't there?
• 26:04
  SPEAKER_01: Well at the moment we don't know if Ren's got celiac disease, which made Jake worse again.
• 26:11
  SPEAKER_01: Because the symptoms of celiac disease is very similar to her sprung, so um bad stomachs, high output, vomiting, headaches, blah blah blah.
• 26:19
  SPEAKER_01: Um so yeah, you we don't know yet, but the baby's good and how is Remy?
• 26:23
  SPEAKER_01: How is she doing?
• 26:24
  SPEAKER_00: She's really really good.
• 26:25
  SPEAKER_00: Yeah, she's really good.
• 26:26
  SPEAKER_00: She sleeps really well.
• 26:27
  SPEAKER_00: That's another thing.
• 26:28
  SPEAKER_00: I don't know whether this is a legit thing or not, but I breastfed JJ for a very long time after he was born.
• 26:35
  SPEAKER_00: I breastfed him until he was six months old.
• 26:37
  SPEAKER_00: Couldn't breastfeed Remy at all.
• 26:39
  SPEAKER_00: Um I tried for the first two weeks, but I think because I wasn't necessarily getting the nutrients that I need as well as what she needs, she wasn't feeding very well.
• 26:48
  SPEAKER_00: So for the first two weeks it was very hit and miss.
• 26:51
  SPEAKER_00: Um got to the point where she didn't go to the toilet for a while.
• 26:54
  SPEAKER_00: And I thought something's not wrong here.
• 26:56
  SPEAKER_00: For about five or six days she didn't have a poo.
• 26:58
  SPEAKER_00: So I was like, something's not right here, and that's I was exclusively breastfeeding.
• 27:02
  SPEAKER_00: Turns out she wasn't getting the right milk from me.
• 27:05
  SPEAKER_00: So that was a bit hard at the beginning because I thought I was just gonna be exactly the same as JJ.
• 27:10
  SPEAKER_00: I never crossed my mind that I would never be able to do it.
• 27:13
  SPEAKER_02: So How did you manage with the like recovery from the C-section?
• 27:17
  SPEAKER_02: Because the peop people think that the C-section is the easy way out of having a baby, and it's definitely not.
• 27:24
  SPEAKER_00: No.
• 27:24
  SPEAKER_00: It's not.
• 27:25
  SPEAKER_00: Um it it's not, but because I've had other surgeries, it's it's like because my stoma surgery was probably the worst surgery that I had because it was an emergency and it was really hard to recover from.
• 27:38
  SPEAKER_00: My protectomy is probably on a par with my stoma surgery, but my C-section seems quite not easy, I wouldn't want to use that word, but because I've had them surgeries previously, it was I've done this before, I can do it again, sort of situation.
• 27:52
  SPEAKER_00: I can recover.
• 27:53
  SPEAKER_01: There's a there's something you get at the end of it as well, isn't it?
• 27:56
  SPEAKER_01: Whereas with other surgeries, you're not there's no prize.
• 27:58
  SPEAKER_01: No, it's so like you maybe at the end to go, oh that was worth it.
• 28:03
  SPEAKER_00: You get different plumbing.
• 28:04
  SPEAKER_01: Yeah.
• 28:04
  SPEAKER_00: The recovery was absolutely was fine, which was something I was worried about because obviously I'm on humane, I'm on and so if I take I I took that all the way through to she was born, but then I have to give it a break for six weeks while I'm healing.
• 28:17
  SPEAKER_00: And if I haven't healed fully, then I won't be able to take it back again.
• 28:20
  SPEAKER_00: So I have to wait until I heal fully to take my injection.
• 28:23
  SPEAKER_02: How was she, Remy?
• 28:24
  SPEAKER_02: Because obviously you were on the immunosuppressants throughout your entire pregnancy.
• 28:28
  SPEAKER_02: So were her um first jabs delayed?
• 28:32
  SPEAKER_00: Yes.
• 28:32
  SPEAKER_00: Well the live ones were, so she hasn't been able to have the rotavirus and she won't be able to have that until she's 12 months old.
• 28:39
  SPEAKER_01: Yeah, Rem can't either.
• 28:40
  SPEAKER_00: No.
• 28:41
  SPEAKER_00: So the other ones are fine and she's been absolutely fine with them.
• 28:44
  SPEAKER_00: She's not had any side effects or anything like that.
• 28:46
  SPEAKER_00: She is very prone to colds though, so she I feel like she has a permanent cold.
• 28:50
  SPEAKER_00: But because she doesn't know any different, she's just learnt to live with the fact that she's got a permanent cold.
• 28:55
  SPEAKER_00: Strong, independent woman.
• 28:57
  SPEAKER_00: She's just like this, she's just like, yeah, okay, we'll get on with it.
• 29:00
  SPEAKER_00: Oh, look at so we've just we've had lots of diffusers on and you know, oh yeah soil everywhere.
• 29:07
  SPEAKER_00: Are you still on the Humira?
• 29:08
  SPEAKER_00: I am.
• 29:08
  SPEAKER_00: I started again um when I'd fully healed from my C-section and when my six-week checkup, you obviously go and get church, and she said, Yeah, it's fine.
• 29:15
  SPEAKER_00: And I thought I need to start taking it because what I realise with Humera, if I don't take it for a while, because if you've got a cold or if you've not feeling very great, there's no point in you taking it because it'll make you feel worse.
• 29:25
  SPEAKER_00: So I if I find I haven't taken it for about two or three weeks, I get mouth ulcers and I can feel myself getting run down.
• 29:31
  SPEAKER_00: I'm like, I need to take it because this is my Crohn's like coming back in a little bit here.
• 29:36
  SPEAKER_00: And as soon as I take it, I'm fine again.
• 29:38
  SPEAKER_02: I mean, how do you feel like because like myself, even though you've had the trouble bits taken out, we still have to take immunosuppressants for the rest of our lives.
• 29:48
  SPEAKER_00: It's It was sad when I found out, to be honest.
• 29:51
  SPEAKER_00: I was very, very gutted because I thought, what is the point in having all of these surgeries if I'm still gonna just be on medication?
• 29:56
  SPEAKER_00: And I know there is a point because I would not be here if it wasn't for my stoma, but it's very frustrating because you think you're having these sit you're having these surgeries to take the trouble bits out and you're not gonna have any issues again.
• 30:09
  SPEAKER_00: Because that's what you get told at the time.
• 30:10
  SPEAKER_00: You're like, well, well take this out and you'll be absolutely fine.
• 30:13
  SPEAKER_00: So it does happen, and then two or three weeks later you're like, this doesn't feel quite right here.
• 30:17
  SPEAKER_00: So when I found out I wasn't gonna be on immunosuppressants, and it's a it's a weekly immunosuppressant as well, it's not like two weekly, it's just a bit alright, great.
• 30:27
  SPEAKER_02: What are you how do you feel like with regards to because you're like me, we seem to metabolise things very fast.
• 30:36
  SPEAKER_02: So I've like four different immunosuppressants, and I'm now on the only one that's really, really kept things at bay.
• 30:44
  SPEAKER_02: And I'm like, well, I've got to stop that for surgery.
• 30:47
  SPEAKER_02: What if I build antibodies to that one?
• 30:50
  SPEAKER_00: That that was a worry for me because I built immunos I built antibodies between infliximabs when I was in hospital when I my first my my first stoma surgery.
• 31:01
  SPEAKER_00: I'd had him I had one dose of infliximab to see if that would make me feel any better.
• 31:04
  SPEAKER_00: Do you know kind of shock my bowel into working?
• 31:08
  SPEAKER_00: It didn't work, unfortunately, and that's when I ended up having my stoma.
• 31:11
  SPEAKER_00: When I started getting my like my anal Crohn's, they put me on infliximab again, and I had a reaction to it while I was in hospital and I'd built up antibiotics in that short period of time.
• 31:21
  SPEAKER_00: So then when they've said, Oh, because you've got a C-section, you can't have your humor or you can't have your ambient for six weeks, I was thinking, oh God.
• 31:29
  SPEAKER_00: So when I start taking it again, it's not gonna work.
• 31:31
  SPEAKER_00: I'm already in my head thinking it's not gonna work.
• 31:33
  SPEAKER_00: Touch what it has, and it's been absolutely fine.
• 31:36
  SPEAKER_00: But I would have been panicking because there's not much else that I can try.
• 31:40
  SPEAKER_00: Do you know what?
• 31:40
  SPEAKER_02: I think it's absolutely amazing that you know, 15 years on from when I had Maisy, that you can take immunosuppressants during your pregnancy.
• 31:50
  SPEAKER_02: Because when I was pregnant with Maisy, I had to stop all of the medication.
• 31:55
  SPEAKER_01: Yeah.
• 31:55
  SPEAKER_00: And it's that would having Crohn's while you're pregnant anyway is a struggle.
• 32:00
  SPEAKER_00: Yeah.
• 32:00
  SPEAKER_01: How um how has your stoma fared since the C-section?
• 32:04
  SPEAKER_01: So you know, any I well, I know the answer, but I have to ask as of this, and you know mine, but for the for the people.
• 32:13
  SPEAKER_00: Um how has it been?
• 32:15
  SPEAKER_00: I think as my as my belly went down, because um I was quite quite big, to be fair.
• 32:20
  SPEAKER_00: I have quite big babies.
• 32:23
  SPEAKER_00: Um as my stoma as my belly went down, my stoma obviously shrank, so I was quitting my bag still at the normal size that I thought I was, and it wasn't.
• 32:31
  SPEAKER_00: So my skin was really sore when I first had Remy.
• 32:35
  SPEAKER_00: So I'd be changing my and obviously you could try and change it every day, but it's sometimes it's not possible.
• 32:39
  SPEAKER_00: It's not possible.
• 32:39
  SPEAKER_00: Unless I'll have a leak, I wouldn't change it.
• 32:42
  SPEAKER_00: And I'd change I'd be changing it at two every two or three days.
• 32:46
  SPEAKER_00: And my skin would be really, really sore.
• 32:48
  SPEAKER_00: So it got to the point where I started having bag-free showers again, which I loved because I haven't had a bag free shower for a while, um, just because of how fast my output was.
• 32:56
  SPEAKER_00: It's slowed down since, so I thought I'll I'll have a nice little bag free shower, and that really, really helps my skin.
• 33:01
  SPEAKER_00: But then, like I said, Eakin sent me some free seals to try, so I put that on and it's cleared my skin up wonders.
• 33:07
  SPEAKER_00: It's really, really nice.
• 33:08
  SPEAKER_01: I found it a bit I I'm not frustrated with my stoma much, but when I'd had the C-section, I had the stoma, my skin was awful with my stoma after.
• 33:20
  SPEAKER_01: I mean, I think the stretch in like I'd gone pretty big, and then I was expressing like a demon because they said I could freeze it to build him up when he'd had his stoma surgery, so I was trying to express every two hours.
• 33:32
  SPEAKER_01: My stomach kind of sunk back in itself really quickly, and it's like my stoma couldn't keep up and my skin got really sore.
• 33:40
  SPEAKER_01: And I think I remember just like being we ha we had a room in Nicka where parents could stay, and I think I I was just standing there and I was like, my stoma was going, my bag was leaking, my it was all going on with my scar, you've got the pads in, you've got boobs are leaking.
• 33:58
  SPEAKER_01: Yeah, your boobs are leaking, and I just looked at Luke and I was like, What is this?
• 34:02
  SPEAKER_01: Like what I don't know what to do first.
• 34:05
  SPEAKER_01: I need breast pads, I need paternity pads, I need a bag change, I need a wee, I need to it was just it just felt like because I didn't have a stoma with Jake and I just felt like I really don't need a stoma right now.
• 34:17
  SPEAKER_01: Yeah.
• 34:17
  SPEAKER_01: Like it I it I felt quite resentful of it, and I hadn't really felt like that since my stoma surgery, but I really felt like just I really would like to not have this right now.
• 34:27
  SPEAKER_01: Yeah.
• 34:27
  SPEAKER_01: Like it was a lot.
• 34:28
  SPEAKER_01: Like I get that feeling.
• 34:30
  SPEAKER_03: Ugh.
• 34:32
  SPEAKER_01: Yeah.
• 34:32
  SPEAKER_01: Yeah, it's hard, isn't it?
• 34:34
  SPEAKER_02: Yeah, I don't think I've ever been resentful for my stoma.
• 34:38
  SPEAKER_02: I'm however resentful about the fact that they took the drains out too early, which has given me 18 months of living hell, but um I mean I mean it's like what advice would you give to people?
• 34:54
  SPEAKER_02: Because sometimes when people have stoma surgery they go one way or the other.
• 35:00
  SPEAKER_02: So they're either very, very, very happy or they're very, very, very sad.
• 35:05
  SPEAKER_02: And with your journey and you've had quite literally one hell of a ride, what what advice would you give to other people if they were facing the same same like end of goal of they're going to have a stoma regardless?
• 35:26
  SPEAKER_00: I I when I first found out I was having a stoma, I did not like it at all.
• 35:31
  SPEAKER_00: I was very, very, very upset.
• 35:33
  SPEAKER_00: I still I was in a situation where I didn't really know what was going on because I'd been knocked out on that many drugs and I was in hospital for about a week and a half before they decided I was having a stoma.
• 35:42
  SPEAKER_00: So they were just managing my pain basically with really high painkillers and I basically was just lying there with my eyes closed talking to people.
• 35:49
  SPEAKER_00: So that's how I because if I opened my eyes, I'd felt sick.
• 35:53
  SPEAKER_00: So I I knew there was something that needed to be done.
• 35:55
  SPEAKER_00: So when they told me I was having a stoma, I actually didn't believe them.
• 35:59
  SPEAKER_00: So my stoma nurses came, measured me up.
• 36:01
  SPEAKER_00: It was really painful because I couldn't really move very well because I was that sore.
• 36:05
  SPEAKER_00: They obviously put you in all these different positions, don't they, to mark you up?
• 36:08
  SPEAKER_00: And I remember being marked up and I thought, yeah, I'm getting marked up, but I'm still not gonna have one.
• 36:13
  SPEAKER_00: It's fine.
• 36:14
  SPEAKER_00: Alright.
• 36:14
  SPEAKER_00: It'll be alright.
• 36:15
  SPEAKER_00: They're just Denial, denial.
• 36:16
  SPEAKER_00: They'll just see if uh they'll just I'll go down, they'll open me up to see everything's fine, and then I'll come back up and it'll be alright.
• 36:22
  SPEAKER_00: And then uh eventually went down to surgery.
• 36:25
  SPEAKER_00: It was really, really bad at this point.
• 36:26
  SPEAKER_00: Obviously, it was just going to the toilet and it was just blood coming out, so I knew it was something really serious that was happening, but I still was like, Yeah, I'm fine, they'll just give it a wipe.
• 36:42
  SPEAKER_00: I was in a lot of denial almost, to be fair.
• 36:44
  SPEAKER_01: But it's but it was that your coping mechanism.
• 36:47
  SPEAKER_00: I think it was.
• 36:48
  SPEAKER_00: I think it was because I thought, well, if I if I don't think I'm getting it done, I'm not getting it done.
• 36:51
  SPEAKER_00: Um unfortunately that wasn't the case, and I woke up with a stoba and I was like, oh great.
• 36:56
  SPEAKER_00: How did you feel when you first looked down?
• 36:59
  SPEAKER_00: Awful.
• 37:00
  SPEAKER_00: It sounds very bad to say because I'm not Oh no.
• 37:03
  SPEAKER_00: I'm not like that now.
• 37:04
  SPEAKER_00: But at the time I was like, I don't want anyone coming to see me.
• 37:07
  SPEAKER_00: At this point, all my friends were popping in and out to the hospital because I was that poorly, they were allowed to come and go as they pleased.
• 37:13
  SPEAKER_00: There was no visiting times, there was no nothing.
• 37:15
  SPEAKER_00: They were just coming and going whenever they wanted.
• 37:17
  SPEAKER_00: My Rick was obviously there with me all the time, and my mum and dad were there with me all the time.
• 37:21
  SPEAKER_00: Um, but I was just I didn't want it.
• 37:25
  SPEAKER_00: I'd they'd been giving me loads of booklets to read before and I thought, I'm that out of it, I can't read anything anyway.
• 37:29
  SPEAKER_00: So I don't know what you're giving me that for.
• 37:31
  SPEAKER_00: And then when I had my story we're done, I remember sitting there with my mum and her husband, and she was going, You need to read the book.
• 37:37
  SPEAKER_00: I went, Nope.
• 37:38
  SPEAKER_00: She was like, Why are you not reading the book?
• 37:39
  SPEAKER_00: I said, I don't want to read the book.
• 37:40
  SPEAKER_00: I don't I don't want to read the book.
• 37:41
  SPEAKER_00: I know I've got it right now, and I'm gonna have it for the rest of my life.
• 37:43
  SPEAKER_00: So I will read the book when I'm ready to read the book.
• 37:46
  SPEAKER_00: I don't want to read the book right now.
• 37:47
  SPEAKER_00: It's the point where her husband went, Leave her alone.
• 37:51
  SPEAKER_00: She's not ready to read the book.
• 37:52
  SPEAKER_00: I can tell she's not ready to read the book.
• 37:54
  SPEAKER_00: And I think me reading that book meant it was gonna be that was it.
• 37:57
  SPEAKER_00: It was real.
• 37:58
  SPEAKER_00: Um it was only a couple of days later because obviously I tend to have my problems over a bank holiday weekend.
• 38:04
  SPEAKER_00: So this was Easter.
• 38:05
  SPEAKER_00: So I had Friday where I didn't see a stoma nurse, Saturday, Sunday, Monday, where I didn't see a stomaurus.
• 38:10
  SPEAKER_01: So I'd had- you had your surgery on the Thursday.
• 38:13
  SPEAKER_01: On the Thursday.
• 38:13
  SPEAKER_01: And then you did you see but you saw one after you're off.
• 38:16
  SPEAKER_00: I saw one, and it was I had my surgery on the Tuesday, but because I was in intensive care, I didn't see a stoma nurse.
• 38:20
  SPEAKER_00: Yeah.
• 38:20
  SPEAKER_01: So it was You didn't see one.
• 38:22
  SPEAKER_00: Didn't see one.
• 38:23
  SPEAKER_00: I had nurses looking after me, but I didn't see an actual stoma nurse.
• 38:26
  SPEAKER_00: They weren't.
• 38:27
  SPEAKER_01: So they're trained though, aren't they?
• 38:30
  SPEAKER_01: Yeah.
• 38:30
  SPEAKER_01: They uh they empty it and Were you che so when did you first change the bag yourself?
• 38:35
  SPEAKER_00: Probably about a week later.
• 38:38
  SPEAKER_00: With my stoma nurse was with me.
• 38:40
  SPEAKER_00: She came in and that was the first time I actually properly looked at it because I'd I wouldn't change it.
• 38:45
  SPEAKER_00: I I'd be I'd be like, I need a nurse who come and take my bag off and or they didn't even change it at that point, they just emptied it.
• 38:50
  SPEAKER_00: So they democrated it into a bucket.
• 38:54
  SPEAKER_00: Yeah, I think so.
• 38:55
  SPEAKER_00: But then they might have changed it when I was in intensive care because I wasn't quite with it.
• 38:58
  SPEAKER_00: I don't know.
• 38:59
  SPEAKER_00: I don't know.
• 39:00
  SPEAKER_02: Yeah, but the the the amount that your stoma even goes down in that first week.
• 39:05
  SPEAKER_02: Was your skin sore when they took the bag off?
• 39:07
  SPEAKER_02: Not that I'm aware of, I can't remember.
• 39:09
  SPEAKER_00: But I was I was very out of it, to be fair.
• 39:13
  SPEAKER_00: Um but so my when my stoma nurse first came to change my bag, we sat there and had a really good conversation about it.
• 39:19
  SPEAKER_00: But I had staples, so I'd been cut from top to bottom and I had staples and remember a nurse came to clean my wound up, and that's when I th first thought, oh my gosh, like I've gone through something really, really serious here.
• 39:30
  SPEAKER_00: How long were you in the hospital for?
• 39:32
  SPEAKER_00: Um a week and a half after my stoma surgery.
• 39:34
  SPEAKER_00: So in total I was in there for a month because I'd been so poorly beforehand, they weren't sure what they were gonna do.
• 39:40
  SPEAKER_00: I'd had my stoma surgery and then I was in for another week after, week and a half after.
• 39:44
  SPEAKER_00: I'd obviously suffered a miscarriage in that time as well, so and another DNC.
• 39:48
  SPEAKER_00: Which then sent me into a post-op IS, so my stoma wasn't working anyway.
• 39:52
  SPEAKER_01: So Were you offered support for your mental health during that then?
• 39:57
  SPEAKER_01: Well post that?
• 39:58
  SPEAKER_00: For my miscarriage, yes.
• 39:59
  SPEAKER_00: For anything else, no.
• 40:00
  SPEAKER_00: I remember someone came to see me and said, I'm here to talk about your miscarriage.
• 40:04
  SPEAKER_00: And I was like, I don't really want to talk about that because in my head I knew I wasn't well enough to have a baby anyway, so that's kind of been dealt with.
• 40:10
  SPEAKER_00: I was upset, don't get me wrong, it was sad that I wasn't gonna be able to have another baby.
• 40:14
  SPEAKER_00: But this bit here, the stoma, the surgery, the crohn's, is what I'm trying to deal with right now.
• 40:19
  SPEAKER_00: But she wouldn't really speak to me about that.
• 40:21
  SPEAKER_01: So you're just about a miscarriage.
• 40:24
  SPEAKER_00: No, we'd we just deal with miscarriages.
• 40:26
  SPEAKER_00: So if you're okay about the miscarriages, then that's fine.
• 40:28
  SPEAKER_00: What say they could refer you or I ended up getting referred to supporting minds, but I had to do that myself through my GP.
• 40:35
  SPEAKER_00: So that was that was a bit of hard work.
• 40:37
  SPEAKER_00: But going back to the advice thing, because I felt like I didn't want my stoma at the time, all of this afterwards, the realising the gravity of the situation and realising actually I could have died if I hadn't had the stoma done.
• 40:51
  SPEAKER_00: That made me kind of snap in and go, I like it.
• 40:53
  SPEAKER_00: It's saved my life, it's great, it's my little accessory.
• 40:56
  SPEAKER_00: And that's what I would that's the advice I would give to people.
• 41:00
  SPEAKER_00: Like it I know it's not something that you want right now, but you will in time learn to love it.
• 41:07
  SPEAKER_00: You might not love it as much as I do, but you will endu not enjoy it, but it you will learn to like it.
• 41:13
  SPEAKER_00: It will become a part of your reality and you forget that it's there most of the time.
• 41:19
  SPEAKER_02: I mean, how how did you feel reaching out to others?
• 41:24
  SPEAKER_02: Because obviously I've known you for a long time, so I knew you pre-stoma and then post-stoma.
• 41:30
  SPEAKER_02: So how did you feel reaching out to people?
• 41:32
  SPEAKER_02: Because obviously social media's only really become prominent more like during lockdown than after.
• 41:39
  SPEAKER_00: I I but I the only people the only support I had before social media was my stoma nurses.
• 41:44
  SPEAKER_00: I had obviously my family's support and things like that, but people knowing exactly what's happened was very few and far between with me.
• 41:52
  SPEAKER_00: I remember going to my stoma nurses support group.
• 41:55
  SPEAKER_00: I've walked in and without sounding horrible, an ageist, but they were all elderly people, and I'm thinking, oh god, like am I now classed as an older person because I've got a stoma?
• 42:07
  SPEAKER_00: No, it sounds really weird to say, but then I thought, oh, I was gonna take JJ and Rick with me just so that we could I had some support.
• 42:13
  SPEAKER_00: And then I thought, oh, they said, Oh no, I don't think kids will be allowed.
• 42:16
  SPEAKER_00: So I was like, right, okay, you stay at home and I'll go on my own.
• 42:19
  SPEAKER_00: And I thought, oh, I see a little boy there.
• 42:21
  SPEAKER_00: So it I could have brought JJ, it's fine.
• 42:23
  SPEAKER_00: Didn't realise that that little boy had a stoma, and I thought, if I'm feeling like this now, how is that little boy feeling?
• 42:28
  SPEAKER_00: I need to snap myself out of this because this is stupid.
• 42:31
  SPEAKER_00: Like this little boy is probably feeling ten times worse than I am because he is eight years old, sat with a room full of elderly people with stomas, and I just thought, give me a bit of a reality check.
• 42:41
  SPEAKER_00: Then I was like, come on, Jen.
• 42:43
  SPEAKER_01: You're absolutely fine.
• 42:44
  SPEAKER_01: The fact that you had a group to go to is amazing itself.
• 42:48
  SPEAKER_01: I mean, there's not one anywhere locally for me.
• 42:50
  SPEAKER_01: Is there one for you?
• 42:52
  SPEAKER_02: No, it's been closed down c post-COVID, uh they they couldn't get the fun funding to keep it running anymore.
• 42:57
  SPEAKER_02: So it's been closed if they don't do it anyway.
• 43:00
  SPEAKER_01: But I think that's why a lot of us, I know for me, I went on Instagram because initially I didn't have a stoma, my son did, and I just wanted to find others who were in my position because I didn't know anyone, and it was really hard.
• 43:14
  SPEAKER_00: I I remember doing a bit of a scrolling while I was in hospital.
• 43:17
  SPEAKER_00: Just I just think I put in like a tag word ostomy or stoma or something, and loads of accounts came up and I thought, oh, I'll have a look at these, and I think that's when I added you, and then and obviously I've you've found me as well.
• 43:30
  SPEAKER_00: And I just I found a whole host of people that I thought, oh, there is people like me that the same age as me, similar age as me, and they're rocking it with an abs with a stoma.
• 43:38
  SPEAKER_00: You both found me.
• 43:40
  SPEAKER_01: Yeah, we haven't been able to shake you up since nice in a loving way.
• 43:47
  SPEAKER_01: In a loving way.
• 43:48
  SPEAKER_00: Oh it made me feel so much better.
• 43:51
  SPEAKER_00: And then because I'd found you guys, and then I'd found little that I found I I ended up researching the companies as well because I thought, I'll see what's out there.
• 43:59
  SPEAKER_00: Like I ended up getting samples of bags, which is probably the best thing I could have done because it made me have the confidence to try other things as well.
• 44:06
  SPEAKER_00: Um, and then obviously through reaching out to these companies, you read about blog posts that other people do, and then you follow them on Instagram, and it was just great seeing that there was a whole different community, which was fab, and I thought I'm gonna do it myself, I'm gonna do my own.
• 44:18
  SPEAKER_01: We've experienced different stuff, haven't we?
• 44:20
  SPEAKER_01: Like we all learn off each other all the time.
• 44:22
  SPEAKER_00: Oh, yeah, definitely.
• 44:23
  SPEAKER_01: A lot more than what we would if we were in a hospital setting, unfortunately.
• 44:26
  SPEAKER_00: But what makes me laugh is that my stoma nurses are now sharing people that they see on Instagram.
• 44:30
  SPEAKER_00: I know her, I know her.
• 44:32
  SPEAKER_01: I know them, I know them, yeah, they're a mate.
• 44:34
  SPEAKER_00: Yeah, there was a time where there was obviously some underwear that I'd put on in Instagram and they were like, they saw me on the I can't believe you posted a picture wearing them underwear.
• 44:45
  SPEAKER_00: I was like, Well, it's a stoma underwear, so I've got it.
• 44:49
  SPEAKER_02: Oh no, that's great.
• 44:51
  SPEAKER_02: Um, I mean, it's been great having you.
• 44:54
  SPEAKER_02: I'm so glad you won the competition so we could meet you in real life.
• 44:58
  SPEAKER_00: I've been so excited on me.
• 45:00
  SPEAKER_00: I'm so sorry I couldn't call in January.
• 45:03
  SPEAKER_00: Oh, that's more than okay.
• 45:04
  SPEAKER_02: Okay, you're worth the wait.
• 45:06
  SPEAKER_02: Um, so yeah, I'd like to say thank you to all of you to listening to Beyond the Pouch.
• 45:12
  SPEAKER_02: We hope you've enjoyed listening and take something valuable away from this episode.
• 45:18
  SPEAKER_02: And we will see you next time.
• 45:21
  SPEAKER_02: So bye.