Latest / Beyond the Pouch / E5: Natalie Discusses Pregnancy, Contraceptives & Periods with Crohn's Disease

Transcript

E5: Natalie Discusses Pregnancy, Contraceptives & Periods with Crohn's Disease · Beyond the Pouch

• 0:01
  SPEAKER_01: Hi guys, welcome to Beyond the Pouch, a podcast series brought to you by Pelican, Kickin, and Respond with your host, Rachel and Louise.
• 0:09
  SPEAKER_01: Dive into the world of autonomy through open and honest conversations, including the lives of many inspirational ostomers that we're lucky enough to call our friends.
• 0:17
  SPEAKER_01: You get to know them beyond the pouch.
• 0:20
  SPEAKER_00: So, hi, we're back for our fifth episode of Beyond the Pouch.
• 0:24
  SPEAKER_00: If you haven't already listened to the first few episodes, please head over to Spotify or YouTube to give them a listen or a watch.
• 0:31
  SPEAKER_00: This week we're very excited as we are joined by another guest, Natalie A.K.
• 0:35
  SPEAKER_00: the Spoony Mummy, who will be discussing her stoma story along with female issues such as contraceptives and periods with the stoma.
• 0:42
  SPEAKER_00: Hey Natalie.
• 0:44
  SPEAKER_00: Hello.
• 0:44
  SPEAKER_00: Hello.
• 0:45
  SPEAKER_00: It's like old times.
• 0:47
  SPEAKER_00: It is.
• 0:48
  SPEAKER_00: Memory lane.
• 0:49
  SPEAKER_00: Well, we started blogging about the same time, didn't we?
• 0:51
  SPEAKER_00: It was 2017.
• 0:54
  SPEAKER_02: Yeah.
• 0:54
  SPEAKER_00: That's crazy, isn't it?
• 0:56
  SPEAKER_00: Well, the time's gone.
• 0:57
  SPEAKER_02: Madness.
• 0:59
  SPEAKER_02: I mean, I feel I feel I've kind of neglected the blog a little bit this last year with all the work stuff I've been doing.
• 1:05
  SPEAKER_02: But it's hopefully getting back on track now.
• 1:07
  SPEAKER_00: It's life though, isn't it?
• 1:08
  SPEAKER_00: I mean, you passed your uni degree, you're now a teacher.
• 1:11
  SPEAKER_00: Long time coming.
• 1:12
  SPEAKER_00: Yeah.
• 1:12
  SPEAKER_00: But you got there.
• 1:13
  SPEAKER_00: Definitely, I got there.
• 1:15
  SPEAKER_00: With everything going on with regards to your health, it's been crazy that you've managed to get to where you are because you've not had it easy, have you?
• 1:22
  SPEAKER_00: Thank you.
• 1:22
  SPEAKER_02: No, it's not, but I just think I hope that people can sort of look at my story and be like, yes, it's taken a lot longer than I sort of hoped it would, but I have got there in the end.
• 1:33
  SPEAKER_00: You've not had it easy, have you?
• 1:35
  SPEAKER_00: Because obviously you you have a stoma, but even pre-stoma and pre-Crohn's, you were diagnosed with rheumatoid arthritis as a child, wasn't you?
• 1:43
  SPEAKER_02: Yeah, so I have never known any different.
• 1:46
  SPEAKER_02: I was only 15 months old when that was diagnosed.
• 1:51
  SPEAKER_02: Then I got diagnosed with the iritis, which is something that a lot of children get when they have rheumatoid arthritis.
• 1:57
  SPEAKER_02: Adults can get it as well, but um often children get it.
• 2:03
  SPEAKER_02: So that was when I was seven.
• 2:04
  SPEAKER_02: Um my mum and dad have actually just had their 30th wedding anniversary, and the week before their wedding, I was in hospital with that, and I was just like, I need to get out, I'm a bridesmaid.
• 2:14
  SPEAKER_02: Oh no.
• 2:15
  SPEAKER_02: Um and then my bowel problems actually started when I was about eight or nine.
• 2:20
  SPEAKER_02: Um I sort of I feel really sorry for my sort of child self because knowing the pain now of a Crohn's flare and thinking back then it was probably that, um, but at the time it was put down to sort of the medication I was on for my Crohn's for my arthritis causing it and things like that.
• 2:37
  SPEAKER_02: So it took a long time to get a diagnosis.
• 2:41
  SPEAKER_00: I mean, I know Osie, you was it, I was diagnosed with Crohn's when I was 18, you were diagnosed when you were 26, but it is it was only after the diagnosis with the Crohn's that you realised that the issues that you had having children pre-Crohn's diagnosis was caused by the undiagnosed Crohn's.
• 3:02
  SPEAKER_02: Yeah, so it was really weird.
• 3:04
  SPEAKER_02: Um everything with the pregnancy went really well with my first.
• 3:09
  SPEAKER_02: Um, they often say when you've got chronic illness, if they could like bottle the pregnancy hormone, oh yeah, they would they would like give it you because um you often find that you don't flare and things.
• 3:20
  SPEAKER_02: So first pregnancy was brilliant.
• 3:22
  SPEAKER_02: Um ended up being induced because my water started going a little bit early.
• 3:27
  SPEAKER_02: Um, so that to sort and my labour didn't start, so they kicked me off.
• 3:30
  SPEAKER_02: Um cervix didn't open, was in full-blown labour for 36 hours, and eventually they said, like, this is enough, we need to take you for a C section.
• 3:40
  SPEAKER_02: Um, and by that point, I think the most I'd got to was about one centimetre.
• 3:44
  SPEAKER_02: No, it wasn't, it was half a centimetre with Leo.
• 3:47
  SPEAKER_02: Um took me for the emergency section, that was all fine.
• 3:51
  SPEAKER_02: Went to have my second, wanted a V back, was hoping next time it would be just normal.
• 3:57
  SPEAKER_02: I got to a centimetre with him, so I was like, yes, we're going.
• 4:02
  SPEAKER_02: And uh exactly the same again.
• 4:04
  SPEAKER_02: I actually went backwards after that rather than forwards, um, 35 hours that time, emergency C section.
• 4:11
  SPEAKER_02: But when they went in that time, they realised my bowel was attached to my bladder.
• 4:17
  SPEAKER_02: I think my bladder was attached to my room.
• 4:19
  SPEAKER_02: He was having to do like a lot of repair work once he'd got the baby out.
• 4:22
  SPEAKER_02: And it was only after the diagnosis they were like, the scar tissue is probably caused by your repeated Crohn's flares that haven't been picked up.
• 4:31
  SPEAKER_00: I know that feeling because the same happened with Maison.
• 4:34
  SPEAKER_00: I remember I was in labour for three days and they kept saying to me, your waters haven't gone, you haven't dilated, and I'm telling you now, they've gone.
• 4:40
  SPEAKER_00: And it's because my cervix is inverted, you have to go proper routing about to actually find my cervix to swivel it round to see what is actually going on.
• 4:48
  SPEAKER_02: Yeah, well, I've got that issue now since having the Pamprocto a couple of years ago.
• 4:54
  SPEAKER_02: Um, I asked at the time, I had a coil in, which was working really well.
• 5:00
  SPEAKER_02: Obviously, with the methotrexate, you have to be super careful not to get pregnant.
• 5:05
  SPEAKER_02: Um, so I had a coil.
• 5:07
  SPEAKER_02: First sort of four or five months was a bit unsettled.
• 5:09
  SPEAKER_02: Once it settled, worked brilliantly.
• 5:12
  SPEAKER_02: Um coming up for my Pamproctor, I was like, do I need to have my coil out?
• 5:16
  SPEAKER_02: Because obviously they tell you that your room can tip backwards and all that sort of stuff.
• 5:20
  SPEAKER_02: She was like, No, no, no, it's fine.
• 5:22
  SPEAKER_02: Literally, the morning of my surgery when I met her, I was like, Do you want to take the coil out while you're in there?
• 5:27
  SPEAKER_02: I was single at the time.
• 5:28
  SPEAKER_02: I was like, it's fine, like I'd rather not have any issues.
• 5:32
  SPEAKER_02: She was like, No, no, it would be fine.
• 5:34
  SPEAKER_02: Came out of the surgery, all was okay.
• 5:37
  SPEAKER_02: Um, had a lot of issues afterwards, sort of sepsis, I'd got pelvic collections, um, blood clots.
• 5:44
  SPEAKER_02: So it took a good few months to get over that.
• 5:47
  SPEAKER_02: But um, then started sort of spotting and having irregular bleeding, and my mum's a cervical smear screener, so obviously she's very on on the ball with all that sort of stuff.
• 5:58
  SPEAKER_02: She was like, Go and get it checked out, go get it checked out.
• 6:00
  SPEAKER_02: Um, and I sort of I think I got fobbed off a bit really.
• 6:04
  SPEAKER_02: They were like, you'll be fine, you'll be fine.
• 6:06
  SPEAKER_02: Um, they did my smear, and the lady actually said about how hard it was to find my cervix at that point.
• 6:13
  SPEAKER_02: Um, but this continued and it was just getting heavier and heavier.
• 6:16
  SPEAKER_02: And obviously, I've got chronic anemia, so losing blood constantly is just not a good idea.
• 6:23
  SPEAKER_02: Um went into the GP, the nurse was like, Oh, I know it's tricky, we know your cervix is really far back, but I'm the expert, I can get it in, I can get it out.
• 6:34
  SPEAKER_02: Sorry.
• 6:35
  SPEAKER_02: She had said this to me, she thought she could get it in, and at that point I had to go to gynecology at the hospital because she couldn't.
• 6:42
  SPEAKER_02: But I was like, Go on then.
• 6:43
  SPEAKER_02: Well, that just started an absolute mission.
• 6:45
  SPEAKER_02: She couldn't get it out, but what she did cause was a massive infection in my wound.
• 6:49
  SPEAKER_02: Oh, so then I ended up in A E.
• 6:53
  SPEAKER_02: And um, bless him, the gynecologist was lovely.
• 6:56
  SPEAKER_02: But he was like, Whoa! And I was like, You don't want to hear that when you're down there.
• 7:03
  SPEAKER_02: He was like, It's so far back, and he was like, he was like, Wow, I've never seen one this far back, and I was just like, Oh no, brilliant! But yeah, so he managed to get it out.
• 7:15
  SPEAKER_02: Luckily, I was on two lots of strong antibiotics for a couple of weeks, but um oh I feel like yeah, I always sort of say to people now, sort of trust your instincts.
• 7:26
  SPEAKER_02: I was like, I wish I'd have pushed to get it taken out beforehand.
• 7:30
  SPEAKER_02: Um, before that happened.
• 7:31
  SPEAKER_01: So when did you have your stoma surgery then?
• 7:34
  SPEAKER_01: Was that pre-having your kids or after?
• 7:37
  SPEAKER_01: That was after.
• 7:39
  SPEAKER_02: So I think the boys were what have you been?
• 7:43
  SPEAKER_02: Seven and then four.
• 7:46
  SPEAKER_02: Um I'd had the Crohn's at that point for four years, but because I was used to having arthritis, I sort of when I flared, I thought, I'd like to just manage this at home.
• 7:58
  SPEAKER_02: This is how life's gonna be.
• 8:00
  SPEAKER_02: And I do think at some points I probably should have been in hospital a lot sooner than I sort of just tried to manage it at home.
• 8:08
  SPEAKER_02: I know over like six days at Christmas I lost a stone, and bear at the time I was only like eight stone anyway.
• 8:15
  SPEAKER_02: And my mum was obviously really worried, but I was just like, oh, it's just Crohn's, I've got to deal with it, it's it's gonna be like this.
• 8:22
  SPEAKER_02: Um, and then it was November 2015 when I actually first got admitted, and I was actually in ketone acidosis, which is something that you get when you're diabetic, I think, due to the blood sugars being because I wasn't absorbing food and things properly.
• 8:38
  SPEAKER_02: Um at the time, my marriage with the boy's dad was sort of going down the pan.
• 8:45
  SPEAKER_02: He was very much like, you need to get out of the hospital, you need to be out, I can't take more time off work.
• 8:49
  SPEAKER_02: And so that was really stressful.
• 8:51
  SPEAKER_02: So I came out probably earlier than I should have done.
• 8:55
  SPEAKER_02: They'd done an MRI, but they didn't have the results.
• 8:58
  SPEAKER_02: So they were like, it's fine, we'll just phone you and let you know what we need to do.
• 9:03
  SPEAKER_02: And it wasn't until the January I was seeing my GP about something else, and she was like, Oh, what are they doing about the mass in your barwell?
• 9:10
  SPEAKER_02: And I was like, Pardon, she was like, The mass that they found on the MRI.
• 9:14
  SPEAKER_02: I was like, What?
• 9:15
  SPEAKER_02: So she got straight on the phone, and it was like emergency um cameras and scopes and stuff like that.
• 9:23
  SPEAKER_02: The doctor I actually saw wasn't my consultant, and he was awful, he was horrible, but he did redeem himself a little bit later in the story.
• 9:34
  SPEAKER_02: But um, they basically couldn't really get the scope in, couldn't see anything, everything was so swollen, so it was just awful.
• 9:42
  SPEAKER_02: Um then they wanted to do a capsule endoscopy, um, which they did the test thing for in March.
• 9:51
  SPEAKER_02: Um and that got stuck.
• 9:54
  SPEAKER_02: But by the point of them phoning me to say it's got stuck, I was already in hospital because I was so poorly.
• 10:00
  SPEAKER_00: So am I guessing that the bowel was that inflamed that the reason they couldn't get up past is because your sigmoid completely closed off.
• 10:09
  SPEAKER_02: Yeah, so I'd got a patch, the bit they removed when they did my stoma surgery was they said it was about seven to eight inches of my small and the beginning of my large had basically completely closed up.
• 10:21
  SPEAKER_02: That's why the capsule endoscopy couldn't get through.
• 10:23
  SPEAKER_02: That's the bit they removed and then formed the stoma.
• 10:26
  SPEAKER_02: And that was basically at the time due to the fact that my Crohn's was so active all the way through, rejoining would have been an issue potentially.
• 10:38
  SPEAKER_02: And the fact that I'd been on steroids, methotrexate, and biologics at that point for so long, they were like reconnecting you is really risky, so that's why they wanted to do the stoma.
• 10:49
  SPEAKER_00: Yeah, it's that basically turns your bow into paper, basically paper, doesn't it?
• 10:53
  SPEAKER_00: It's just just so she can tear at anything.
• 10:55
  SPEAKER_02: I mean, I know when the surgeon did my Pan Procto collectomy, she phoned my mum afterwards to say, like, oh, it's gone really well.
• 11:01
  SPEAKER_02: She was like, I was right, her insides were super slippy, and they did it because of the steroids.
• 11:06
  SPEAKER_02: My mum was like, I really don't want to know.
• 11:09
  SPEAKER_01: I think the one of the things that come up on closed groups on Facebook, and I know I've been asked, which you must have before, Lou, is the topic of contraception and when you're having stoma surgery that's planned or elective, the fact that that discussion isn't being done.
• 11:27
  SPEAKER_00: I mean No, it's not.
• 11:29
  SPEAKER_00: And I think the problem that you've got with contraceptives and a stoma, it all depends on the reason why you've had your stoma.
• 11:40
  SPEAKER_00: So me and Natalie with Crohn's disease, we both suffer with malabsorption.
• 11:44
  SPEAKER_00: The pill just isn't an option for us because our body won't absorb it.
• 11:48
  SPEAKER_00: And then you've got the other issues of things like the deprepivera in the and the implant have some really nasty side effects.
• 11:56
  SPEAKER_00: Um, I know for me I can't have either because they said me little psychotic.
• 12:02
  SPEAKER_00: Me Hulk, me smash.
• 12:06
  SPEAKER_00: Um, and then obviously you've got the coil.
• 12:09
  SPEAKER_00: Now, if you're having a temporistoma, the coil's absolutely fine.
• 12:14
  SPEAKER_00: Knowing what I know now after panproctomy surgery and my coil and the removal, insertion, removal, new insertion, another removal four times in the space of two years.
• 12:28
  SPEAKER_00: It's especially after proctomy surgery, it's not fun.
• 12:32
  SPEAKER_01: Yeah.
• 12:32
  SPEAKER_00: Things tilt back.
• 12:34
  SPEAKER_01: And and I found that when so when I had um a planned C section for my boy, he's seven and a half now, and when I was having scans and that, and they were like, oh, your your womb is attached to your back from scar tissue.
• 12:49
  SPEAKER_01: So I found that through the whole pregnancy everything was absolutely fine, but my back was aching like holy hell, and I was not prepared for that.
• 12:57
  SPEAKER_02: I think this is it, and I think the big thing for me is being on methotrexate is very scary to think of getting I've had pregnancy losses through Crohn's flares and things like that, and it's something I wouldn't wish on anybody.
• 13:12
  SPEAKER_02: And I'm like, why don't they tell people that you're not going to absorb the pill?
• 13:17
  SPEAKER_02: Whether you've got a stoma or just Crohn's malabsorption or anything.
• 13:21
  SPEAKER_02: Um, the other thing with the injection is for me, um, it thins your bones.
• 13:25
  SPEAKER_02: So if you've got any type of arthritis, that's also not really an option.
• 13:30
  SPEAKER_02: Um, but yeah, it's not doctors don't know.
• 13:33
  SPEAKER_02: I don't think GPs know enough about it, but no, not at all.
• 13:37
  SPEAKER_02: Sort of I feel quite strongly about sort of shouting about and saying you need to realise what these do.
• 13:44
  SPEAKER_01: I think a lot of people end up not using any contraception because none work for them, and then where does that leave you?
• 13:52
  SPEAKER_00: The problem that you've got there's there's not enough, there's not enough research put into women's reproductive or contraceptive help and what is needed, majority of contraceptions.
• 14:04
  SPEAKER_00: Sorry to say this to any men, but it majority of contraceptions have been designed by a man.
• 14:10
  SPEAKER_00: It's not they're not designed by women.
• 14:12
  SPEAKER_00: Um what's the statistic you were sharing with me before when we had a little pre-podcast chat?
• 14:19
  SPEAKER_00: So uh condoms, for instance, if you go into the family planning clinic, they have a nice big diagram up on a board and it gives you the rates of how well they do and how well they protect you.
• 14:35
  SPEAKER_00: Condoms are at the top of the list because it's 15 in every hundred.
• 14:40
  SPEAKER_00: So out of every hundred used, 15 of those had fall pregnant.
• 14:47
  SPEAKER_02: I mean, that's massive, isn't it?
• 14:48
  SPEAKER_02: Yeah, considering that they're all crazy, but that's only 99% accurate.
• 14:53
  SPEAKER_01: But also that's what a lot of people fall back on because they can't absorb, or like I haven't got the same as you guys, I've got Hirschsbrung's disease, but again, I've never been able to take the pill or do anything that requires a good level of absorption because I can't absorb it either.
• 15:07
  SPEAKER_01: So it's but that's so then you go to something like condoms thinking, oh, I'll be fine.
• 15:13
  SPEAKER_01: And then uh little miracles happen.
• 15:18
  SPEAKER_00: It's not enough is known and it it's crazy.
• 15:21
  SPEAKER_00: I mean, if I'd have been told, obviously, I've done the research now, I've had the protectomy surgery, but had I have known what I know now with regards to the protectomy, I would have maybe have put it off a little bit longer.
• 15:34
  SPEAKER_00: I mean, uh having protectomy surgery and then having a coil removed four years after having that protectomy surgery done is not fun.
• 15:44
  SPEAKER_00: And even then I didn't need to have it removed, but the woman who'd done my smear test had got it wrong, and I still had another three years left on it, so I could have been comf in comfort for another three years and would not have had to have put myself through that, and it's just not fun.
• 15:58
  SPEAKER_00: I mean, an hour every time to have one taken out and put in, and then to be told that the first time I wasn't allowed to have the local anesthetic because it would make her job harder.
• 16:08
  SPEAKER_00: Oh bless.
• 16:09
  SPEAKER_00: Oh no, yeah.
• 16:10
  SPEAKER_01: The one that the one that makes me laugh is when you go to the GP and go, right, okay, you know, I'm looking for some contraception, go, oh yeah, try the pill, try this, try that.
• 16:18
  SPEAKER_01: And you're having to tell them that's not gonna work for me.
• 16:21
  SPEAKER_01: I'm not gonna I'm not gonna absorb that.
• 16:23
  SPEAKER_01: And they're looking at you like you've got three heads.
• 16:26
  SPEAKER_01: Have you have you read my notes?
• 16:27
  SPEAKER_01: Have you?
• 16:28
  SPEAKER_01: I mean, don't get me wrong, I'm guessing we all have quite a lot of notes on the system if we ever go to see a medical professional, but we've all got diagnosis.
• 16:37
  SPEAKER_01: Yeah.
• 16:38
  SPEAKER_01: So it's very listed, isn't it?
• 16:40
  SPEAKER_00: It's always I do the letters and it baffles me.
• 16:43
  SPEAKER_00: A female diaphragm is more effective than using a condom, but then when you've got issues like we have, a diaphragm is not necessarily an option because we might not be able to get it back out once it's in.
• 16:54
  SPEAKER_01: Oh, I so I I was offered the coil and the stories I had read, like females, similar to yourselves.
• 17:02
  SPEAKER_01: There was no way in hell I was gonna say yes.
• 17:05
  SPEAKER_01: Absolutely not.
• 17:06
  SPEAKER_01: Thank no, thank you.
• 17:08
  SPEAKER_02: Yeah.
• 17:08
  SPEAKER_02: I mean, the coil for me worked so brilliantly beforehand, but after I would never go through any of that again and would suggest it to everybody be like, no, get it taken out before your surgery, and really probably don't think about it afterwards.
• 17:24
  SPEAKER_02: Yeah.
• 17:24
  SPEAKER_00: I think the easiest thing to ask for, especially in situations like us, especially if we're not planning on having any more, is just ask for sterilization.
• 17:32
  SPEAKER_00: But with me and Natalie, that's not necessarily an option because of the amount of scar tissue that we have in the uterus and what stuff is ducked.
• 17:40
  SPEAKER_02: Going in again would be you're just introducing more scar tissue and everything, aren't you?
• 17:45
  SPEAKER_02: It's hard.
• 17:45
  SPEAKER_00: It's that's another risk, isn't it?
• 17:48
  SPEAKER_00: It's uh how did you guys find your pregnancies in terms of the effects of surgeries and scar tissue and I hadn't actually I'd had my appendix removed when I was pregnant with Maisie, but I hadn't had any actual surgery because they couldn't they couldn't locate where my fistula was.
• 18:08
  SPEAKER_00: Had I known then what I know now, I probably wouldn't have ever got pregnant because that's kind of left me in the state that I'm in today.
• 18:15
  SPEAKER_00: I d I wouldn't I love Maisie to bits, I really do, but it was a very difficult time and my pregnancy was absolutely fine, but I had a Crohn's flair at 26 weeks.
• 18:26
  SPEAKER_00: I was in hospital for a month at 30 weeks, from 26 weeks until 42 weeks, because I was two weeks overdue with Maisie.
• 18:34
  SPEAKER_00: I was on high dosage at they put me on like 90 milligrams a day of bread for dictalone.
• 18:39
  SPEAKER_02: So I think that's the one thing they can give you during pregnancy, isn't it?
• 18:42
  SPEAKER_00: Yeah, so I blew up, I I literally resembled a whale at the time.
• 18:47
  SPEAKER_00: So the only blow we're putting it, and I think that the steroids caused issues, and that's probably part of the reason why my bowel perforated.
• 18:55
  SPEAKER_00: I had scar tissue in there because of the Crohn's, which they didn't know about, but it explains why my scans were really difficult when I was pregnant and why I kept having to have internal scans instead of external, because these with with an ultrasound, the way they work, that the the the ultrasounds that they put through you then bounce back an image through the scope, but when you've got the scar tissue, the scar tissue kind of absorbs it and it it's just literally like a black space.
• 19:23
  SPEAKER_01: Yeah, yeah.
• 19:24
  SPEAKER_00: Um that probably should have given them a heads up at the time.
• 19:28
  SPEAKER_01: Yeah, what about you, Natalie?
• 19:29
  SPEAKER_01: Like in between you so you said your first pregnancy went really well.
• 19:32
  SPEAKER_01: How did it compare to your second?
• 19:34
  SPEAKER_02: Yeah, that was brilliant.
• 19:35
  SPEAKER_02: Um, my second, I did struggle more.
• 19:38
  SPEAKER_02: Um, I ended up on pre as well.
• 19:40
  SPEAKER_02: Luckily, not quite that high.
• 19:42
  SPEAKER_02: They did try and keep me on sort of a low dose.
• 19:45
  SPEAKER_02: Um, but yeah, it wasn't as enjoyable.
• 19:48
  SPEAKER_02: I did flare, my arthritis was flaring.
• 19:50
  SPEAKER_02: My bowels, obviously, I wasn't diagnosed at the time, but they were always horrific, so it just carried on as per but um he was also measuring quite small, apparently.
• 20:02
  SPEAKER_02: My my bump was measuring small, so I was sort of back and forwards to the hospital.
• 20:08
  SPEAKER_02: He was absolutely fine.
• 20:09
  SPEAKER_01: He was 7-7 when he was born, so just extra stress, I think, which wasn't needed.
• 20:15
  SPEAKER_01: Which is when you have a chronic illness and you're pregnant, it's um you can't, it's not like you're suddenly gonna not have your chronic illness anymore, is it?
• 20:22
  SPEAKER_01: You've got to manage that as well as everything that comes with being pregnant.
• 20:26
  SPEAKER_00: It was crazy.
• 20:27
  SPEAKER_00: I was having scans, I was having gross scans every two weeks with Maisie up until 36 weeks.
• 20:32
  SPEAKER_02: Oh, it's just I know I had because I had extra scans with Leo because I'd not been pregnant before.
• 20:38
  SPEAKER_02: They wanted to keep a closer eye on me.
• 20:40
  SPEAKER_02: And then with Riley, they were like, the first pregnancy went great, we don't need to do the extra scan.
• 20:45
  SPEAKER_02: So I was a bit gutted because I was like, Oh, I quite liked it.
• 20:48
  SPEAKER_02: But yeah, um, then having to go in, I think I was about 32 and 36 weeks, they sent me back in again.
• 20:55
  SPEAKER_02: They were like, You're measuring small, you measure and they did say on the growth scan, they were like, Oh, he's he is small, but he's gonna be fine, he's not too too small.
• 21:03
  SPEAKER_02: And then, like I say, he was born a day after his due date, no, two days after his due date, 7-7.
• 21:08
  SPEAKER_02: So he was absolutely fine.
• 21:11
  SPEAKER_00: It's it's difficult because I know like neither me or Natalie have experienced pregnancy with a stoma, so we we can't give advice to that.
• 21:20
  SPEAKER_00: We can advise obviously pregnant with a chronic illness or several chronic ill illnesses, but not with a natural stoma, because obviously I can't have any more children because my uterus might just decide to rupture and then I'd be in big trouble.
• 21:34
  SPEAKER_01: I mean, so at this point it's probably I've probably shared that I am pregnant.
• 21:41
  SPEAKER_01: Yeah.
• 21:42
  SPEAKER_01: And I have a stoma.
• 21:44
  SPEAKER_01: Congratulations.
• 21:45
  SPEAKER_01: Thank you.
• 21:45
  SPEAKER_01: Um so I am experiencing it this time with a stoma, which I didn't last time, and my God, is it different?
• 21:55
  SPEAKER_01: And I've already had to have early urgent scans.
• 22:00
  SPEAKER_01: Um purely because of pain down there and my st around my stoma, in my back, and the thing that the consultants keep saying is this is typical and this you are going to experience this because of the surgeries you've had and the scar tissue.
• 22:17
  SPEAKER_01: So coming from, like you said, a pregnancy where I had a a brilliant first pregnancy with Jake.
• 22:23
  SPEAKER_01: I was really fit and healthy.
• 22:24
  SPEAKER_01: I was, God, I was I was active, I was a teacher working at the time.
• 22:29
  SPEAKER_01: Um it was brilliant.
• 22:31
  SPEAKER_01: I mean, oh, that is not the case now.
• 22:34
  SPEAKER_00: It is yeah, the scar tissue will be a factor.
• 22:38
  SPEAKER_00: Um I think most women that have had stoma surgery do get advised that being pregnant with a stoma, that the the scar tissue obviously stretching and everything pushing out could possibly cause pain.
• 22:53
  SPEAKER_00: Not obviously everybody's different, so no one person will um go through the same experience.
• 23:01
  SPEAKER_00: If you are pregnant with a stoma, best advice I can give you um on Facebook there is it's that that massive group, isn't it, Natalie?
• 23:08
  SPEAKER_00: The um ostomy What's it called?
• 23:11
  SPEAKER_02: Is it oh I'm in a one called Mums with IBD, that's not stoma specific though.
• 23:16
  SPEAKER_00: No, but is it just ostomy mums?
• 23:18
  SPEAKER_00: It might be ostomy mums, yeah.
• 23:20
  SPEAKER_00: There is a massive group like all over the world that there's literally like a million women in that group.
• 23:26
  SPEAKER_00: Wow, wow.
• 23:27
  SPEAKER_02: Yeah.
• 23:28
  SPEAKER_02: It's really good.
• 23:29
  SPEAKER_02: And I know I've heard people say they've had to like switch the bag they use because it didn't see quite as well.
• 23:34
  SPEAKER_00: And I have been told that to keep an eye on.
• 23:37
  SPEAKER_00: Yeah, because the hormones can change the makeup of your skin, and obviously the skin's stretching because your stoma can also grow whilst you're pregnant.
• 23:44
  SPEAKER_00: Obviously, not to scare you, but with pregnancy with a stoma, you are at risk of obviously hernia.
• 23:49
  SPEAKER_00: Alright.
• 23:52
  SPEAKER_00: Talk about stomach positive.
• 23:54
  SPEAKER_01: No, but people need to know this because But I mean, to be fair to my stoma nurse, um, so for when I was getting pains around my stoma, because I've never had issues with my stoma apart from when I had to have it refashioned, but as soon as I had to have that done, it was done.
• 24:09
  SPEAKER_01: Touch wood, I've been fine.
• 24:11
  SPEAKER_01: And um, yeah, they were they were really supportive, telling me all the things to expect.
• 24:16
  SPEAKER_01: So I use a convex firm one-piece bag at the moment.
• 24:19
  SPEAKER_01: She said, Look, you're definitely gonna have to change your bag, that is gonna happen.
• 24:23
  SPEAKER_01: So as soon as you feel like yours is working for you less.
• 24:25
  SPEAKER_01: No But you might not have to, you but I might not have to, so yeah, we'll we'll have to wait and see.
• 24:31
  SPEAKER_01: But there's there are quite a lot of women out there that share their experiences.
• 24:36
  SPEAKER_02: Um, but yeah, we'll I think as well, I know.
• 24:39
  SPEAKER_02: I mean, I've got the two boys, and I'm sort of at the age now, and obviously I've just started teaching and things, and I'm sort of focusing on that, and it has come to the point where I'm like, I probably won't have any more.
• 24:52
  SPEAKER_02: But they do warn you before pramproctocolectomy surgery.
• 24:55
  SPEAKER_02: She was like, because my doctor's amazing, she was like, No, you've got the two boys, but she's like, Is it a thaw?
• 25:01
  SPEAKER_02: And I said, It is, but it's not sort of I've got to have another one, I need to have another one.
• 25:06
  SPEAKER_02: But they obviously warn you about that, don't they, before you have the surgery.
• 25:10
  SPEAKER_02: But then being in that sort of online IBD anostomy world, I know of so many women who've had amazing pregnancies with stomas, yeah.
• 25:20
  SPEAKER_02: So it definitely isn't sort of the end of it.
• 25:24
  SPEAKER_01: It just it's the individual, isn't it?
• 25:26
  SPEAKER_01: As with everything, it's no two people are the same, and you're not gonna find someone who's going for exactly the same as you.
• 25:32
  SPEAKER_01: But um, I've I have seen a lot more positive than negative.
• 25:37
  SPEAKER_01: But then again, when you are pregnant, you feel vulnerable anyway, and not a lot of people want to share stuff.
• 25:43
  SPEAKER_01: I know for me, I'm not as active on social media as I was before, especially during the last two months.
• 25:49
  SPEAKER_01: I haven't been for that very reason.
• 25:51
  SPEAKER_01: Um, so people aren't gonna share things like that as much.
• 25:55
  SPEAKER_00: I think for those who are looking, that Facebook group that me and Natalie have recommended is absolutely amazing.
• 26:01
  SPEAKER_00: Everybody's pregnancy, the experiences in there from the good to bad, what they have and what they haven't had to do is absolutely amazing.
• 26:08
  SPEAKER_00: But the problem that you've got with like Instagram and Twitter, some will post up about their pregnancies, and there's one or two that I can think of where they're either aiming for the positive or the negative.
• 26:19
  SPEAKER_00: There's no middle ground, and that's the this is the problem because obviously, with you being pregnant, if you've come across that other person that all they posted about was all the negatives during their pregnancy and not the positives, you're gonna be having a look at that going, oh my god.
• 26:37
  SPEAKER_02: And thinking, Oh yeah, yeah.
• 26:38
  SPEAKER_02: Whereas those are well I've just joined yeah, sorry, I've just joined an adrenal insufficiency group because I'm I've just been diagnosed with that, and I was sort of speaking on there and I was like, How often do people go into adrenal crisis?
• 26:52
  SPEAKER_02: I seem to see loads of posts about it, like it's happening lots, and I'm sort of a bit scared.
• 26:58
  SPEAKER_02: And there was a lady on there, and she was like, just remember, people don't come on in the internet to say they're having a great day and they've not been in hospital all year.
• 27:06
  SPEAKER_02: And I was like, Do you know what I tell so many people that on the ostomy and IBD groups?
• 27:11
  SPEAKER_02: I'm like, remember, people generally only come here when they have a problem.
• 27:15
  SPEAKER_02: When they're off living the life, they're not going to be online.
• 27:17
  SPEAKER_02: No, so I think I sort of reminded me of the owner my own advice, and I was like, Yeah, that's true, and you've got to sort of take it all with a pinch of salt and remember that's not the whole of everybody's story, and keep that in your head.
• 27:31
  SPEAKER_01: How have you found your new career as a teacher with having an ostomy?
• 27:36
  SPEAKER_02: Um, so far, so good.
• 27:39
  SPEAKER_02: So I've been I've been working in a sense school this past year, so um it's students with profound multiple learning difficulties, all very um poorly children.
• 27:51
  SPEAKER_02: So we have a lot of TA support, so obviously just nipping out to the toilet's been quite easy.
• 27:56
  SPEAKER_02: Oh yeah, brilliant.
• 27:57
  SPEAKER_02: But um, I am going into mainstream, which is obviously going to be a bit of more of a challenge.
• 28:02
  SPEAKER_02: You should have a TA all the time.
• 28:05
  SPEAKER_02: That doesn't always happen in mainstream.
• 28:07
  SPEAKER_01: Are you secondary or primary?
• 28:09
  SPEAKER_02: Primary.
• 28:10
  SPEAKER_02: Oh yeah, don't do big ones.
• 28:11
  SPEAKER_01: Oh god, no.
• 28:12
  SPEAKER_01: I was secondary and I I could not I put my hat off to you because I couldn't have taught primary, I was secondary.
• 28:18
  SPEAKER_02: Oh, it's so bizarre, isn't it?
• 28:19
  SPEAKER_02: How people are like they win all the other, aren't they?
• 28:22
  SPEAKER_02: Yeah, yeah.
• 28:22
  SPEAKER_02: Yeah, definitely.
• 28:24
  SPEAKER_02: But um, yeah, the school have been brilliant, they know all about it.
• 28:27
  SPEAKER_02: I've had my sort of Oki Health thing already.
• 28:30
  SPEAKER_02: I mean, in the last school I was in last year, when I came with the adrenal insufficiency diagnosis, they had to do sort of like risk assessment thing.
• 28:39
  SPEAKER_02: And at that point, he was like, Oh, we'll probably just put your stoma on here.
• 28:42
  SPEAKER_02: Like, what do you need?
• 28:44
  SPEAKER_02: Blah blah blah.
• 28:45
  SPEAKER_02: I said, Oh, there's always like my spare kits in my car.
• 28:47
  SPEAKER_02: So he's like, Well, if you need one of us to go and grab it for you, just let us know and this and that.
• 28:52
  SPEAKER_02: And then literally never had a leak up until that point, which was only probably about two or three months before the end of term.
• 28:58
  SPEAKER_02: Ended up having two leaks one week later.
• 29:02
  SPEAKER_01: So what have you um how did you deal with that leak in school then?
• 29:06
  SPEAKER_01: Were you teaching?
• 29:07
  SPEAKER_01: Were you what happened?
• 29:09
  SPEAKER_02: I was actually on PPA, so I was in the office just working on my laptop.
• 29:13
  SPEAKER_02: Um, everybody was pretty impressed in.
• 29:15
  SPEAKER_02: They were like, Do you need us to go and get you anything?
• 29:17
  SPEAKER_02: And I was like, No, no, no.
• 29:18
  SPEAKER_02: I've it was sort of contained.
• 29:20
  SPEAKER_02: I caught it very quickly.
• 29:21
  SPEAKER_02: I was like, this isn't right.
• 29:22
  SPEAKER_01: Yeah.
• 29:23
  SPEAKER_02: Um, went out to my car and grabbed my kit.
• 29:26
  SPEAKER_02: The problem I had was that my kit's been in my car for goodness knows how long.
• 29:30
  SPEAKER_02: I haven't had to use it.
• 29:31
  SPEAKER_02: So then the new bag I put on, I think the adhesive had just diminished.
• 29:37
  SPEAKER_02: Um so obviously that then caused the second leak.
• 29:40
  SPEAKER_02: And then because I was on PPA, it was very, I was just like, I'm gonna go home, I'm gonna get a shower, get a property bag change done, and then I can carry on working from home.
• 29:49
  SPEAKER_00: So the other thing I'd be interested in is as to whether or not stoma bags do actually have shelf life.
• 29:54
  SPEAKER_01: Well, I know because of the summer and the hot weather, I so I use a seal and uh oh, they are warping like a god knows what in the heat in the car, in my emergency kit.
• 30:03
  SPEAKER_01: And purely down to human error, I'm not putting I probably should put them in some kind of insulated lunch bag.
• 30:10
  SPEAKER_01: That's actually a very good idea.
• 30:11
  SPEAKER_01: I've just thought of now.
• 30:12
  SPEAKER_01: That is a good bag.
• 30:13
  SPEAKER_01: Um yeah, go back.
• 30:14
  SPEAKER_01: But I don't, I just put it in a wash bag in my emergency car kit.
• 30:17
  SPEAKER_01: I've got mine and my little boy's ostomy supplies in it for our just in case.
• 30:21
  SPEAKER_01: But again, like you, I've hardly ever had to use it.
• 30:24
  SPEAKER_01: And then, of course, if there's an emergency, you go in that bag and then you think, oh my god, what is this?
• 30:31
  SPEAKER_00: Ben has a go at me.
• 30:32
  SPEAKER_00: You know the respondent wash bags.
• 30:34
  SPEAKER_00: Yes.
• 30:35
  SPEAKER_00: You know they've got the zips on both sides.
• 30:37
  SPEAKER_00: Yeah.
• 30:37
  SPEAKER_00: If I'm going for a day out, instead of having to take through two or three sets of bags with me, I put everything into the wash bags.
• 30:43
  SPEAKER_00: That's my debit cards, credit cards, car keys, medication, emergency stomach kit.
• 30:48
  SPEAKER_00: Oh, so multifunctional.
• 30:49
  SPEAKER_00: And I just carry it bound with me, and it's like you're carrying a washbag.
• 30:52
  SPEAKER_00: Why are you carrying a washbag?
• 30:54
  SPEAKER_00: And it's like, well, it beats having loads of bags, doesn't it?
• 30:56
  SPEAKER_01: Oh, it's a delightful colour green.
• 30:57
  SPEAKER_01: I mean, we've responded for the last year's walking down the beach to respond, just hanging out the back of my wash.
• 31:03
  SPEAKER_01: I mean, for those of you that so respond when you sign up to their service to get your ostomy products delivered, um, you get a washbag with that.
• 31:12
  SPEAKER_01: So, yeah, and it's quite a good substantial size for plate to it.
• 31:15
  SPEAKER_01: It's a good size.
• 31:16
  SPEAKER_01: It's good.
• 31:16
  SPEAKER_01: Oh, and the little the little compartments, the little segregated sections are apart.
• 31:22
  SPEAKER_01: Oh, dreamy.
• 31:24
  SPEAKER_00: Um Natalie, there was a couple of things that I wanted to ask you because obviously, I know you've asked me to do blog posts for you in the past with regards to periods after surgery, um, and obviously like the smear tests.
• 31:37
  SPEAKER_00: The other thing that I'm quite interested in is the I remember you saying about um a vaginal Crohn's flair.
• 31:46
  SPEAKER_00: Yes.
• 31:46
  SPEAKER_00: Um this I didn't know that was possible.
• 31:50
  SPEAKER_00: This is the thing a lot of registrars and consultants will say that vaginal Crohn's isn't a thing, but it is if you've had perianal Crohn's disease.
• 31:59
  SPEAKER_02: Yes.
• 32:00
  SPEAKER_02: Um actually, and I can't remember who it was, posted this week.
• 32:04
  SPEAKER_02: I've probably read about it, and she had the same or a similar experience to me in that she was sent for all that the SDG checks and things like that.
• 32:12
  SPEAKER_02: You're made to feel dirty, and like yeah, and I was just like, this isn't a possibility, but I went and I had them all, and it wasn't the case, it was during a massive Crohn's flare, and I was like, There is nothing else it could be, but it's very, very hard to get doctors to you.
• 32:32
  SPEAKER_00: Yeah, can I ask what your symptoms are?
• 32:34
  SPEAKER_00: Because there's a massive uh waiting list with the NHS at the moment, so emergency appointments are taking up to six months.
• 32:41
  SPEAKER_00: I have an emergency appointment in February with the dermatologist at Volva Clinic because of the issues that I'm having down there.
• 32:50
  SPEAKER_00: I have said to my IBD consultant that it's vaginal Crohn's, no, it doesn't exist.
• 32:56
  SPEAKER_00: Yeah.
• 32:57
  SPEAKER_00: And it's infuriating because these issues have only started since I had the proctectomy surgery.
• 33:03
  SPEAKER_00: So once I'd had everything closed up, it's kind of jump ship.
• 33:08
  SPEAKER_02: But before, when I was in the really horrific Crohn's flares, before I had my stoma surgery, I've looked touch wood since then.
• 33:14
  SPEAKER_02: I've never had a flare there again.
• 33:18
  SPEAKER_00: But can I ask what the symptoms were?
• 33:20
  SPEAKER_00: Because with me, I've got like massive itching, um, I keep getting like really weird, strange lumps, I keep getting fissures, so it's really bad to pee, it hurts to wipe.
• 33:31
  SPEAKER_02: Yeah, all the same things.
• 33:32
  SPEAKER_02: Bleeding, um, bleeding, yeah.
• 33:35
  SPEAKER_02: Um literally how you'd imagine what your bowel is inside is going on down there.
• 33:41
  SPEAKER_01: Do you guys do you guys remember your first period after your ostomy surgery?
• 33:48
  SPEAKER_02: Yes, very vividly because the day after I had my surgery.
• 33:54
  SPEAKER_02: Paint the picture because I'd been so poor, I'd literally, I was like down to 40 kilos in weight and stuff.
• 34:02
  SPEAKER_02: My periods had stopped, so um, I wasn't very well.
• 34:05
  SPEAKER_02: Had my stoma surgery.
• 34:07
  SPEAKER_02: I don't think I was back on the water till about 10 o'clock at night.
• 34:10
  SPEAKER_02: Next morning, the physios come in, don't they?
• 34:12
  SPEAKER_02: Come on, we get you up.
• 34:13
  SPEAKER_02: You've got a catheter in and everything, and you're just like we get you up, walk you down the thing, got you back into bed.
• 34:19
  SPEAKER_02: That afternoon, my period started.
• 34:21
  SPEAKER_02: I was like, You've got to be kidding.
• 34:22
  SPEAKER_02: It was the most hideous, like oh, it's just awful.
• 34:26
  SPEAKER_02: I've not got underwear on because I'd got catheters in and drains and all sorts.
• 34:31
  SPEAKER_02: Um, the Saturday morning, the physio came back, he's like, Come on, and I was like, No.
• 34:37
  SPEAKER_02: And he was like, No, no, come on.
• 34:38
  SPEAKER_02: He's like, We'll do it like yesterday.
• 34:39
  SPEAKER_02: Don't worry about your tubes and everything.
• 34:41
  SPEAKER_02: I was like, No.
• 34:43
  SPEAKER_02: You don't understand.
• 34:44
  SPEAKER_02: It's much worse today.
• 34:46
  SPEAKER_02: It's so yeah, I'm the same every time.
• 34:50
  SPEAKER_00: Yeah, every time I've had surgery, my period has literally been a couple of days after.
• 34:53
  SPEAKER_00: And I remember when I had my temporary stoma placed, because of all the scar tissue that I've got, every time I have surgery, they do something called adylysis.
• 35:01
  SPEAKER_00: So they go in and they remove as much scar tissue as they possibly can from my uterus and from inside there just to make life a bit easier because my periods are horrendous.
• 35:11
  SPEAKER_00: Two weeks of the month, I am in agony.
• 35:14
  SPEAKER_02: Yeah.
• 35:14
  SPEAKER_00: And the day after my temporary stoma placement, I had a cafeterin, the physio had had me up and about, I'd had to wash, I felt all nice and clean because you always feel grotty after having surgery.
• 35:28
  SPEAKER_00: I bought myself the most amazing nighty from Primark, it had time for tea on it, it had like little teapots and everything else, and it was white.
• 35:36
  SPEAKER_00: Oh, why would you do that?
• 35:38
  SPEAKER_00: I got put into the nighty.
• 35:41
  SPEAKER_00: The HCA went to help me back on the bed.
• 35:44
  SPEAKER_00: I put one leg up, she helped me shift the other leg up, and it was like a massacre.
• 35:49
  SPEAKER_00: Oh and there was blood everywhere because not only had I started my period, there was all the bleeding from the idylysis as well.
• 35:54
  SPEAKER_00: There was no drain in there, so the cafeter wasn't picking the bud up because it was cut obviously because the cafeter's put into a different hole.
• 36:00
  SPEAKER_02: Oh no.
• 36:01
  SPEAKER_00: And it it was just everywhere, and I remember I was bawling my eyes out because they had to cut me out of my nighty because it was that bad.
• 36:08
  SPEAKER_00: I couldn't lift it above my head.
• 36:10
  SPEAKER_00: I couldn't lift it above my head, it was it was no everywhere.
• 36:14
  SPEAKER_01: We've all been there, haven't we?
• 36:15
  SPEAKER_01: Where you have those times where you're like, this underway can't be saved, it needs to go in the bin.
• 36:20
  SPEAKER_01: I think the problem yeah.
• 36:21
  SPEAKER_00: Yeah, the the problem that you've got with Crohn's disease is your period, everything is inflamed, so your bowel's inflamed, everything's inflamed.
• 36:31
  SPEAKER_00: So you're like, is it a flare or is it my period?
• 36:34
  SPEAKER_02: Yeah.
• 36:35
  SPEAKER_02: Well, I've had, I mean, when I went to talk about having the coil put in, we sort of went through all the options that I couldn't have for medical reasons.
• 36:43
  SPEAKER_02: I've actually had the contraceptive patch before, which works really well.
• 36:48
  SPEAKER_02: I've been on it twice, and it works for about two years, but then it sort of stops working quite as well.
• 36:55
  SPEAKER_02: Um, so we were talking about the coil and she was asking about my periods, and I said, Oh, they're always very, very heavy.
• 37:01
  SPEAKER_02: And um, she was like, Well, how long is your period?
• 37:03
  SPEAKER_02: I was like, Oh, normally about nine, ten days.
• 37:05
  SPEAKER_02: She was like, That's not normal.
• 37:06
  SPEAKER_02: And I was like, No, it's not, but when you've got so much other stuff going on, it was normal too to like address that sort of stuff.
• 37:15
  SPEAKER_02: Yeah, I was like, that's always been the case since I started when I was 14.
• 37:20
  SPEAKER_02: It's always been the way.
• 37:21
  SPEAKER_00: Or the fact that after protectomy surgery, it can be up to 14 days because it takes an extra three to four days for everything to pass because it's treated back.
• 37:29
  unknown: Yes.
• 37:30
  SPEAKER_02: Well, again, that was something I'd read from you about surgery.
• 37:35
  SPEAKER_02: And I was like, this is exactly because I'm like, I don't think sometimes the doctors don't seem to get it, and I'm like, it's like it's stuck there.
• 37:43
  SPEAKER_01: I don't know why they don't mention it.
• 37:45
  SPEAKER_01: Why don't they mention it?
• 37:46
  SPEAKER_00: Like when you're having surgery, why aren't they saying, oh, by the way, you might experience because not everybody is going to the the problem that you've got, everything has to be bog standard and a basic guide.
• 38:00
  SPEAKER_00: Because if you gave another woman mine and Natalie's experience in a leaflet before they went and had their proctomy surgery done, they'd be going, yeah, yeah.
• 38:10
  SPEAKER_01: I'm going, but I haven't met a female who's had ostomy surgery whose periods haven't been affected.
• 38:17
  SPEAKER_01: Maybe that's just coincidence, but I've, you know, we've both met, all of us have met and been in contact with so many women through what we do on social media.
• 38:26
  SPEAKER_01: How is it not talked about more?
• 38:28
  SPEAKER_01: Like I so I don't have flare-ups because I don't have Crohn's, but I had regular periods for four to six days, same time every month.
• 38:37
  SPEAKER_01: As soon as I had my stoma surgery, afterwards, my periods were the mother of all periods.
• 38:43
  SPEAKER_01: The amount of output was colossal, something I'd never experienced.
• 38:48
  SPEAKER_01: Bad, back, bad, this, bad, whatever.
• 38:50
  SPEAKER_01: And when as soon as you talk just to, oh yeah, that that probably be triggered for surgery.
• 38:54
  SPEAKER_01: Oh, okay.
• 38:54
  SPEAKER_01: Well, maybe if someone had mentioned it's a risk.
• 38:58
  SPEAKER_01: I'm not saying yes, you'll definitely have it, but there's no discussion of anything gyneological.
• 39:04
  SPEAKER_00: Yeah, but gyneological and periods is the same as having a stoma.
• 39:08
  SPEAKER_00: It's so taboo, people don't want to hear it.
• 39:11
  SPEAKER_01: I well, I wish I had, because I didn't, I've I had to go from using regular tampons to I could not wear just a tampon, I had to have a tampon.
• 39:20
  SPEAKER_01: And all I can describe is an adult nappy.
• 39:23
  unknown: I know.
• 39:24
  SPEAKER_00: Because what a normal pad is not gonna cut it.
• 39:28
  SPEAKER_02: People talking about it though sort of normalizes it, and it can be very scary.
• 39:32
  SPEAKER_02: Like I said, until I read your thing about um periods being that bit longer because of the angle and everything, I was like, is this just me?
• 39:41
  SPEAKER_02: Like, has something gone wrong?
• 39:43
  SPEAKER_02: And I think by talking about stuff like this, it makes it a bit more normal, and people aren't quite as scared and may then go and talk to the GP or well, don't bother because they're not gonna say anything, are they?
• 39:53
  SPEAKER_02: They're not gonna do much, no.
• 39:55
  SPEAKER_02: But do you know what I mean?
• 39:56
  SPEAKER_02: You feel you feel a bit better about it, don't you?
• 39:58
  SPEAKER_02: And I think that's the amazing thing about sort of the social media aspect of the ostomy community in that now.
• 40:05
  SPEAKER_00: Is that the one well sorry Natalie, I didn't mean to interrupt you there.
• 40:08
  SPEAKER_00: Is that the one where I said about the canary and the mining?
• 40:12
  SPEAKER_00: I think it was.
• 40:17
  SPEAKER_02: Clean shit.
• 40:19
  SPEAKER_02: Um but yeah, it was you know what, it was just exactly what I needed.
• 40:25
  SPEAKER_00: Obviously, with protectomy surgery, because everything tilts back, the smear tests are incredibly difficult because my service is inverted, it's tethered, so they have to go in, they have to turn it round, and then they have to open it to get the swab in to do the scans.
• 40:41
  SPEAKER_00: And after my protectomy surgery, my first smear test after that come back showing cells.
• 40:46
  SPEAKER_00: So I was on a yearly recall, went for the one the following year, so it's it come back positive for HPV.
• 40:52
  SPEAKER_00: So there's me absolutely, oh my god, please, I don't want another thing.
• 40:56
  SPEAKER_00: It's a big thing in my family, female cancer.
• 40:59
  SPEAKER_00: I was like, please no.
• 41:00
  SPEAKER_00: So I went back the following year, come back absolutely negative, and then the one that done the second smear test went, Oh, they might have got the wrong bit last time.
• 41:09
  SPEAKER_02: Oh no, no, honestly, they I said my mum's a cervical smear screener, these the cervix cells look different, so if they get them from the womb or anywhere else, it will look different.
• 41:21
  SPEAKER_00: Okay.
• 41:21
  SPEAKER_02: So it won't have been from the wrong place.
• 41:23
  SPEAKER_02: But I've had the same issue since my surgery, I've become HPV positive, so I'm on a yearly recall.
• 41:29
  SPEAKER_00: I'm actually due, I've got an appointment at the start of September, so I'm going to could that possibly be a thing then with regards to obviously having the bowel removed and things tilting back that maybe that's causing it?
• 41:39
  SPEAKER_02: I don't know.
• 41:40
  SPEAKER_02: It's it's strange, isn't it, that you just said that you'd had that as well.
• 41:44
  SPEAKER_02: And yeah, anyway.
• 41:45
  SPEAKER_02: Well, then they never tested for HPV sort of a few years ago, did they?
• 41:50
  SPEAKER_00: So No, so it'd be interesting to see if there's any other female ostomates that have had protectomy surgery done or even stoma surgery done, that have always had normal smear tests and then they've come back positive for HPV after having the surgery done, that would actually be quite interesting.
• 42:04
  SPEAKER_01: You guys need to do some polls.
• 42:06
  SPEAKER_01: You've got enough for each.
• 42:08
  SPEAKER_00: Do you know what we do things?
• 42:10
  SPEAKER_02: It's just it's like I said, no people people don't necessarily want to hear it, they want to hear the good, they don't want to hear the bad, and it's it's okay with- I always think though, I'll put a post up, and if one person messages me and says that's really resonated with me today, or that really helped me, or I've been going through that, and you've just made that a bit more normal.
• 42:28
  SPEAKER_02: When I put my post up about methotrexate, um, my friend actually messaged me, somebody I used to work with whose child was going through cancer and being treated because methotrexate's chemotherapy.
• 42:40
  SPEAKER_02: Obviously, he was having it in high doses, he's he's fine now, he's been a few years, he's good.
• 42:45
  SPEAKER_02: But she messaged me, she said, Thank you so much because it made me sort of understand the side effects that he's experiencing a bit more.
• 42:52
  SPEAKER_02: And I was like, Yeah, people won't want to read that one or two days out of every week.
• 42:57
  SPEAKER_02: I feel sick, I'm losing my hair, I've got mouth ulcers and all that sort of stuff.
• 43:02
  SPEAKER_02: But for her, that helped, and I think that's yeah.
• 43:05
  SPEAKER_01: I mean, I think we all you both definitely share the good, the bad, and the ugly.
• 43:11
  SPEAKER_01: But it's all relative, isn't it?
• 43:13
  SPEAKER_01: Well your oversharing has helped someone.
• 43:17
  SPEAKER_01: If you hadn't overshadowed, you know, like straight away there's someone.
• 43:21
  SPEAKER_01: I don't I don't think there's someone.
• 43:22
  SPEAKER_01: I mean, you're not getting butt naked on your Instagram, are you, and oversharing in that way?
• 43:26
  SPEAKER_01: You're oversharing in a positive educational way.
• 43:28
  SPEAKER_00: I'm I mean, whenever I've done the Smear Test blog post or a period one, or I've I've redone it and readapted it because I've been asked if I can update it, I do get a lot of comments, and I do get the the thing is I get a lot of messages, but I don't get a lot of comments on the post.
• 43:42
  SPEAKER_00: I get a lot of messages saying, Oh my god, I wondered what was happening.
• 43:45
  SPEAKER_00: That's so great.
• 43:46
  SPEAKER_00: But I'm very much sure if I don't share what people send me on private message because that's between us.
• 43:51
  SPEAKER_00: That's you know, to do that would be breaking their trust and their confidence.
• 43:56
  SPEAKER_00: Yeah.
• 43:56
  SPEAKER_00: And it's just there's so many issues that we Have as females that we're not allowed to talk about or we're not meant to talk about, that having stoma surgery and then having our entire reproductive system changed.
• 44:10
  SPEAKER_00: And not being able to protect ourselves from pregnancy or trying to protect ourselves from pregnancy but not having an easy time of it because, like Natalie said, I've now had to have my call removed.
• 44:22
  SPEAKER_00: So I'm relying in the 15 in a hundred um every 15 out of 100.
• 44:28
  SPEAKER_02: So it's like Well, my partner's actually just been and had the snip, um, but now can't get it checked to make sure it's worked until next year his appointment is.
• 44:43
  SPEAKER_02: So we're still having to double up, which is ridiculous.
• 44:45
  SPEAKER_02: So yeah, everything is just this massive weight all the time, isn't it?
• 44:49
  SPEAKER_01: And it's like Well, I'm I'm quite and I'm in anticipation of what is my period going to be like after giving birth.
• 44:57
  SPEAKER_01: Like, is it oh, I don't know.
• 44:59
  SPEAKER_01: And like the the the backache I'm experiencing at the moment, and so when this comes out, I'll be five months or something.
• 45:08
  SPEAKER_01: So, you know, I can imagine it would be very, very, very, very uncomfortable.
• 45:13
  SPEAKER_01: And it and it's I've had to come off all my chronic pain meds, I've had to come off search truly, and I've had to come off everything because the GP said, right, if you're gonna come off them, you need to now because this was the first appointment when I found out I was.
• 45:27
  SPEAKER_01: Did you go turkey?
• 45:29
  SPEAKER_01: Oh wow.
• 45:31
  SPEAKER_01: Yeah, because I was so the first two.
• 45:34
  SPEAKER_01: Well, no, well, no, he he recommended to.
• 45:36
  SPEAKER_01: So I was basically I was having so with the first one I had no symptoms, it was just the fact I'm missing a period.
• 45:42
  SPEAKER_01: With this one, it was literally like I was actually in Belfast with Pelican and Respond, and I felt sick as a pig.
• 45:51
  SPEAKER_01: And I was working with the lovely Meg and we're in the airport, and I was like, Oh Meg, I feel so sick.
• 45:56
  SPEAKER_01: She was like, Oh, it'll be okay, it'll be fine, you know, just nervous or whatever.
• 46:00
  SPEAKER_01: I was doing a bit of presenting to the RD team, I was doing a bit of work with them and everything.
• 46:03
  SPEAKER_01: I was like, Yeah, maybe I was thinking about don't get nervous.
• 46:07
  SPEAKER_01: Anyone who knows me knows that's not a thing, and I I couldn't work it out.
• 46:10
  SPEAKER_01: And then we were on the plane coming back, and I looked at Meg and I went, Christ, it might be because I'm pregnant.
• 46:15
  SPEAKER_01: And she and we both looked at each other and I was like, you know, and you're like, light bulb.
• 46:20
  SPEAKER_01: And like, yeah.
• 46:21
  SPEAKER_01: How have you found your stomach output?
• 46:24
  SPEAKER_01: It hasn't changed at all, but I keep getting shooting pains around my stoma, and I keep getting shooting pains, not in my groin, but above it, and it's just I I've had early scans, they keep saying, look, it must be the scar tissue because everything's expanding and all that.
• 46:40
  SPEAKER_01: And but you know, I I'm not on any meds, and because I was feeling so sick at the start, they said, Look, coming off these meds is going to make you feel what you're feeling already now.
• 46:47
  SPEAKER_01: So I said, Right, cold turkey, let's just stop it.
• 46:51
  SPEAKER_01: So, yeah, felt sick and terrible coming off it for about a month, but now I'm fine.
• 46:56
  SPEAKER_00: Have they um given you an obstetric consultant?
• 47:00
  SPEAKER_00: No.
• 47:00
  SPEAKER_00: You need to push for an obstetric consultant.
• 47:02
  SPEAKER_00: That's it.
• 47:04
  SPEAKER_00: Just because with that scar tissue, you're gonna feel that a lot as the pregnancy develops.
• 47:12
  SPEAKER_00: The obstetric team can do stuff for you that your GP can't, like what?
• 47:16
  SPEAKER_00: Like keep the pain under control, manage your symptoms.
• 47:20
  SPEAKER_02: So mine like gave me support belts and all sorts of stuff when I was more for the arthritis and stuff, yeah.
• 47:27
  SPEAKER_02: But definitely consultant-led.
• 47:29
  SPEAKER_01: It's I've just been lying with wrinkles and trying to chill.
• 47:34
  SPEAKER_00: Sig and come by, oh, I don't know what else one can do right now.
• 47:37
  SPEAKER_00: No push for an obstetric consultant.
• 47:41
  SPEAKER_00: But again, why haven't I been told that?
• 47:43
  SPEAKER_00: Because sometimes you have to be in the night, sometimes you have to research it yourself to know what to do.
• 47:49
  SPEAKER_01: So, quite honestly, if I haven't been sat U today, I wouldn't have known that.
• 47:53
  SPEAKER_02: I wouldn't have known that.
• 47:54
  SPEAKER_02: How would I have known that?
• 47:56
  SPEAKER_02: It's it's hard, isn't it?
• 47:58
  SPEAKER_02: I mean, I was offered it both times with mine.
• 48:00
  SPEAKER_02: Oh, we by who?
• 48:01
  SPEAKER_02: It should be.
• 48:02
  SPEAKER_02: Um Midwife.
• 48:04
  SPEAKER_02: Must have been the midwife, yeah.
• 48:05
  SPEAKER_01: Oh, see you again.
• 48:07
  SPEAKER_01: Postcodtery.
• 48:08
  SPEAKER_01: I told you.
• 48:09
  SPEAKER_00: No, when you go see the midwife, say that you've had the surgery, you've got scar tissue, you need an obstetric consultant.
• 48:16
  SPEAKER_00: Well, I bring you.
• 48:18
  SPEAKER_00: You can take me if you want, I can fight your cold now.
• 48:21
  SPEAKER_00: She'd be scared hiding behind the desk.
• 48:24
  SPEAKER_00: Oh, well, don't so my little brother's been diagnosed with Crohn's disease and he's under a different hospital.
• 48:31
  SPEAKER_00: And the hospital that he's under happens to be one of the consultants I've might have made cry when there was a registered directory, they saw that.
• 48:38
  SPEAKER_01: Oh, same now.
• 48:39
  SPEAKER_00: My brother said, Can you come into the appointment with me?
• 48:41
  SPEAKER_00: Because you'll listen, you know what to do, you've been diagnosed, everything else.
• 48:44
  SPEAKER_00: I walked in and he went, he went, Is that your sister?
• 48:47
  SPEAKER_00: And he went, Yeah, she used to be my patient.
• 48:49
  SPEAKER_00: Oh.
• 48:49
  SPEAKER_00: My brother.
• 48:50
  SPEAKER_00: Oh, so you know, literally, my brother, first appointment, all the tests, all the blood tests, everything under the sun.
• 48:56
  SPEAKER_00: Because normally they go, they send you away with something, don't they?
• 48:58
  SPEAKER_00: And they go, try that, and I'll see you in six months.
• 49:00
  SPEAKER_00: Do a diary.
• 49:01
  SPEAKER_00: Not with him, everything.
• 49:02
  SPEAKER_00: First appointment done, dusty.
• 49:04
  SPEAKER_00: There you go.
• 49:04
  SPEAKER_01: I I feel like you're meant to do something like this, not your own job that you've been training at years for.
• 49:09
  SPEAKER_01: Sack that off.
• 49:11
  SPEAKER_00: The problem that you've got, we we spoke about patient advocacy before.
• 49:15
  SPEAKER_00: The reason why I do what I do is be that there is a lot of rules between behind the NHS and being able to go into hospitals to talk to patients because not everybody is going to want to talk to someone like us after having surgery, but then you've got patient risk, bad advice risk, wrong advice that could potentially land that person illler than when when they started.
• 49:37
  SPEAKER_01: Like when we see posts of people offering medical advice on social media and you read it, you think, oh God, no, please don't dad.
• 49:46
  SPEAKER_00: Anything we do is always based off of personal experience, what we've been through.
• 49:50
  SPEAKER_00: It's not a I know better, it's a I know myself.
• 49:55
  SPEAKER_00: I know and I might be able to help you and advise, oh well, if you're having this, then it might be this, and you go and get the tests done to check to see what it is.
• 50:02
  SPEAKER_00: But I'm not saying go into the hospital and ask for that medication.
• 50:07
  SPEAKER_00: It's it's a case of.
• 50:09
  SPEAKER_02: I think sometimes people almost want that from you, don't they?
• 50:12
  SPEAKER_02: And you have to be very, very carefully because it's so dangerous.
• 50:17
  SPEAKER_01: It's also, you know, when people get to the point where uh they're on social media getting answers, a lot of the time it's because they're not getting answers from people who should be giving them answers, and there's a desperation there, isn't there?
• 50:27
  SPEAKER_01: Yeah.
• 50:28
  SPEAKER_01: So they are gonna cling on to stuff they read in front of people, whether it's right or wrong, it's a natural human thing to do.
• 50:34
  SPEAKER_00: Yeah, but I've always been of the mind of yes, I'm an ambassador, yes, I have my awareness account, but I can only help that person through their journey.
• 50:43
  SPEAKER_00: I can't tell them what they can and can't do.
• 50:45
  SPEAKER_00: No, which no one should.
• 50:47
  SPEAKER_00: Because it's medical and we're not we're not trained.
• 50:51
  SPEAKER_00: Thank the Lord.
• 50:52
  SPEAKER_00: Um could you imagine?
• 50:54
  SPEAKER_02: I know I still on every blog post that's even slightly like I've just done one about stoma prolapses, so it was a bit of sort of information from the NHS website, bits of that, and then somebody's story about who lives with prolapses on a regular basis, which I don't have, so got them involved.
• 51:11
  SPEAKER_02: But I'm always like, I'm not a medical professional.
• 51:14
  SPEAKER_02: If you need help, you need to go and speak to your stoma nurse, your consultant, like so careful with that stuff.
• 51:20
  SPEAKER_01: Out of all the things you've experienced, I mean, gosh, what what advice would you give to someone who's struggling to accept their diagnosis?
• 51:31
  SPEAKER_02: I think for me, with the Crohn's, especially, being on the online support groups was hugely helpful.
• 51:40
  SPEAKER_02: Um being careful about who you follow.
• 51:43
  SPEAKER_02: Like we've said, there are some people that probably offer not always meaning to, but bad advice because it's too personal or whatever.
• 51:54
  SPEAKER_02: Um, that helped me loads.
• 51:56
  SPEAKER_02: Because I know when I first got diagnosed with Crohn's, I was like, Oh, I'm gonna end up with one of their bags, it's horrific.
• 52:00
  SPEAKER_02: And my appointment was very much I went in there, he was like, Oh, yeah, you definitely got Crohn's.
• 52:06
  SPEAKER_02: Have you got any questions?
• 52:07
  SPEAKER_02: And obviously, my mind's like, I was like, Oh no, no, and he was like, Okay, see you in six months, and then that appointment was like, Oh, we need to push it back, we need to push it back.
• 52:16
  SPEAKER_02: And I think I should have at that point advocated for myself a little bit more and been like, No, I need to see somebody, I need to speak to somebody.
• 52:25
  SPEAKER_02: Um finding out things like stoma nurse's numbers, uh not the stoma nurse's numbers if you've got a stoma, but the IBD nurse's numbers, things like that, phone up who you need to advise from to get advice from.
• 52:38
  SPEAKER_00: Um not every trust has an IBD nurse, though.
• 52:41
  SPEAKER_02: No, well no, mine actually doesn't anymore.
• 52:44
  SPEAKER_02: They've had to close it due to short staffing.
• 52:46
  SPEAKER_02: Um but yeah, I think the community definitely helped me massively.
• 52:51
  SPEAKER_02: I found it about six months before my stoma surgery, and I think I'd have been in a lot worse off position had I not had that sort of support back then.
• 53:01
  SPEAKER_02: Um but yeah, it's not the end of your life.
• 53:06
  SPEAKER_02: It's it for me, it was definitely.
• 53:09
  SPEAKER_02: I mean, I had my surgery two days after my 30th birthday, and I always joked that it wasn't the bag I wanted for my 30th.
• 53:16
  SPEAKER_02: Um but I'd been so so poorly, and literally within an hour of getting back to the water, I was texting my friends and they were like, What are you doing?
• 53:26
  SPEAKER_02: I was like, I feel amazing already, and I and I think that helped a lot as well.
• 53:32
  SPEAKER_02: Um, but it does take time, you have to get used to it, um finding the right sort of bag for you, bits like that.
• 53:39
  SPEAKER_02: I know I went through my wardrobe when I got home and threw out all my clothes.
• 53:42
  SPEAKER_02: I thought that's it, I'm gonna be wearing leggings for the rest of my life, and then obviously that was an excuse to go shopping again afterwards because that's not the case, but yeah, I think I always say to people, give yourself time, like you have had a massive surgery, like you aren't gonna just get up and be okay.
• 54:02
  SPEAKER_02: Um but yeah, I mean for me personally, the ostomy has been amazing, and obviously, I took the decision two years ago to have the completion surgery, which actually was a lot tougher.
• 54:15
  SPEAKER_02: I had the sepsis, I had the collections afterwards, and all different things going on.
• 54:20
  SPEAKER_02: Um but even that sort of took six months to get over, really, that surgery, and now I wouldn't go back.
• 54:27
  SPEAKER_02: It's it was it was hard, but it's definitely the right thing.
• 54:32
  SPEAKER_00: Yeah, I think the best advice I can ever give anybody is to make sure that they learn to advocate for themselves.
• 54:38
  SPEAKER_02: I was just gonna say, I have a lot of medical professionals say to me, like, oh, you really know your stuff and you know about your history, and you know about and I do take a notebook to a lot of appointments with me because I do forget things easily due to the medsamon and things.
• 54:53
  SPEAKER_02: But I think that is so important, like being able to know your history, like being able to go to the GP, ask for my contraception and say, No, I can't have that one, I can't have that one for this reason.
• 55:03
  SPEAKER_02: Um take somebody with you if you need to, but yeah, I think a lot of medical professionals always sort of say to me, Oh, that's a really good thing that you know so much.
• 55:12
  SPEAKER_02: But I'm like, if I didn't, I don't know where I'd be.
• 55:14
  SPEAKER_02: Yeah, you need to.
• 55:16
  SPEAKER_02: Nowhere near as well as now.
• 55:17
  SPEAKER_02: Knowledge is power, it is indeed.
• 55:19
  SPEAKER_01: Definitely.
• 55:20
  SPEAKER_01: Thank you so much, Natalie, for being our fifth guest on Beyond the Pouch.
• 55:24
  SPEAKER_01: We hope those of you that have listened and watched have enjoyed and gained something from it, whether it's about topics of contraception, female health, periods after an ostomy, and we'd love to hear your stories if you wanted to share them with us on the social platforms as well.
• 55:38
  SPEAKER_01: And we hope to see you next time.
• 55:39
  SPEAKER_01: Bye for now.
• 55:40
  SPEAKER_01: Thanks, guys.
• 55:42
  SPEAKER_02: Thank you, bye.