Latest / Tom's Hirschsprung's Podcast / Episode 101 - With Jess Harris (Part 2)

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Episode 101 - With Jess Harris (Part 2) · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
0:15
Speaker 1: Each episode, we will explore real stories and honest conversations
0:19
Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in. Hello, and welcome to episode one hundred and
0:48
Speaker 1: one of Tom's Hirshbrung's Podcast. I'm delighted to be joined
0:52
Speaker 1: by Jess once again. Welcome back, Jess.
0:55
Speaker 2: Thank you.
0:57
Speaker 1: Now, in the last part we talked mainly through your
1:02
Speaker 1: story and sort of right from the beginning through to
1:07
Speaker 1: sort of well now, I guess, but it was sort
1:11
Speaker 1: of mainly a big overview of your story of everything
1:16
Speaker 1: that's happened. And if you haven't heard just this story,
1:19
Speaker 1: please go back and listen to episode ninety nine. There's
1:21
Speaker 1: a lot of things in there, a lot of things
1:24
Speaker 1: in there, but I guess from kind of why we're
1:28
Speaker 1: doing at second part, there's so many things I don't
1:31
Speaker 1: think we quite had time to cover, and certainly I
1:35
Speaker 1: had a lot of questions to ask just because it's
1:39
Speaker 1: not your typical story. It's really kind of and there's
1:44
Speaker 1: so many things that attached themselves to Hirshprungs that people
1:54
Speaker 1: don't necessarily think about. I know, we talked a little
1:57
Speaker 1: bit last time about PTSD in about how how that's
2:03
Speaker 1: affected you kind of going forward, But one thing we
2:07
Speaker 1: didn't really touch on was sort of Stomas and sort
2:11
Speaker 1: of the community around stoners because you've found well, since
2:16
Speaker 1: you've had your stomer, you've found lots of connections and friends,
2:19
Speaker 1: I think, haven't you. Yeah, so it's having that community.
2:24
Speaker 1: How has that helped?
2:27
Speaker 2: It's it made me feel more normal in this abnormal state,
2:35
Speaker 2: if that makes sense. I mean, the only person that
2:38
Speaker 2: I do speak to now with the bag is my friend,
2:44
Speaker 2: my one friend, Josh, and we've stayed friends since we
2:48
Speaker 2: were nine, all the way up until now. We still
2:51
Speaker 2: talk and it just feels nice to have someone that
2:57
Speaker 2: I can message and go, this is happened. What do
3:00
Speaker 2: you think it is? Or I feel a bit off
3:05
Speaker 2: like what do you think? Or just like being able
3:08
Speaker 2: to talk about it. It makes me feel less alone
3:13
Speaker 2: when because so was. Yes, they are more common now
3:17
Speaker 2: than what they used to be, but you still don't
3:20
Speaker 2: run into a person with a stomach bag every day,
3:24
Speaker 2: So it feels kind of like a security thing that
3:29
Speaker 2: I'm not alone and that I do have someone that
3:33
Speaker 2: I can talk to with a bag, especially around my age,
3:39
Speaker 2: because whenever I tell people I've got a bag, like oh, yeah,
3:43
Speaker 2: my grandma's got one or yeah, my mom's got one,
3:46
Speaker 2: and I'm like, that's lovely, But I don't feel like
3:52
Speaker 2: I can relate so much to someone who's a bit older,
3:55
Speaker 2: whereas like I can relate to my friend because we're
3:59
Speaker 2: going through the same thing at the same time, and
4:02
Speaker 2: we can talk about the struggles that we had in
4:05
Speaker 2: school or growing up, you know, the whole tween thing.
4:11
Speaker 2: And it just makes my own feelings feel a bit
4:17
Speaker 2: more validated as well, and that I'm not just being
4:22
Speaker 2: like focusing on the first world problems and that I
4:27
Speaker 2: you know, I am not alone and that there are
4:30
Speaker 2: other people in this situation and it's okay to feel
4:34
Speaker 2: like that, because you know, having a stoma bag isn't
4:40
Speaker 2: It isn't the norm for most people, but it's the
4:42
Speaker 2: norm for me, and that's what's important.
4:46
Speaker 1: Yeah, most definitely, And I think you're absolutely right. You
4:49
Speaker 1: hit the nail on the head there with community and
4:51
Speaker 1: about trying to find people your age with stoners obviously
4:58
Speaker 1: is tricky and when people say, oh, well, I know
5:02
Speaker 1: someone who's you know, a lot older, a lot younger
5:05
Speaker 1: with stonmas, it's really quite difficult to relate to that
5:08
Speaker 1: because you're not going to be doing the same things
5:09
Speaker 1: in life so to have And I guess that's where
5:13
Speaker 1: social media is really quite important. And I know social
5:19
Speaker 1: media it's a lot of flat, but it's it is
5:22
Speaker 1: really really important because trying to find people who have stomas, Like,
5:30
Speaker 1: as we've talked a little bit off her, you can
5:32
Speaker 1: walk down the street and they could be people with
5:35
Speaker 1: stomas walking towards you, walking past you, and you won't
5:39
Speaker 1: know that they have stomers in the same way that
5:41
Speaker 1: someone will see you and they don't know you have
5:43
Speaker 1: a stomach. So it's so trying to find people and
5:47
Speaker 1: trying to make those connections is really really important but
5:51
Speaker 1: also quite tricky as well. And have you sort of
5:57
Speaker 1: is that the way you've kind of found people through
5:59
Speaker 1: social media or it through sort of the Karen's charity,
6:03
Speaker 1: or is it how have you found people?
6:07
Speaker 2: So I met my friend Josh through Karen because we
6:14
Speaker 2: were both in Southampton Hospital at the same time getting
6:18
Speaker 2: us done at the same time. So I remember she
6:23
Speaker 2: introduced us just after we had ours done and we
6:29
Speaker 2: just immediately just became friends because I remember I was
6:34
Speaker 2: laying on my bed and he was opposite the room,
6:36
Speaker 2: and I was like, oh, look at my bag, this
6:38
Speaker 2: is Steve and he was like, look at mine, this
6:41
Speaker 2: is Billy Bob. And you know, it was just really
6:44
Speaker 2: refreshing to have someone in the exact same place as
6:49
Speaker 2: you and hit off from there. And we've been friends
6:55
Speaker 2: now for ten years, so and yeah, yeah, I just
7:01
Speaker 2: don't see. We don't talk as much as like your
7:05
Speaker 2: typical best friend would, but we we know that we
7:10
Speaker 2: can rely on each other and that we are there
7:13
Speaker 2: because we understand everything. And I think that's what's so
7:20
Speaker 2: refreshing is knowing that you've got a support system there,
7:23
Speaker 2: but you're not joined at the hip with each other.
7:26
Speaker 1: Yeah. Yeah, because I guess when it comes to talking
7:30
Speaker 1: about stomas and whatnot, you can talk to doctors, you
7:34
Speaker 1: can talk to nurses and they're fantastic and the brilliant,
7:37
Speaker 1: but they will talk to you, I guess in a
7:39
Speaker 1: very clinical sense in a time kind of this is
7:42
Speaker 1: what the stoma does, this is how it's formed, this
7:46
Speaker 1: is these are the creams, this is these are the
7:49
Speaker 1: bags and whatever. But very few people will be able
7:52
Speaker 1: to talk to you about how it is to live
7:56
Speaker 1: with a stoma bag, you know, day to day, because
7:59
Speaker 1: again it's good as Dobs and Nurst. They can't unless
8:02
Speaker 1: they have it, they can't They can't really talk to
8:05
Speaker 1: you about it, can they. Yeah, So it's just kind
8:08
Speaker 1: of it's it's quite it's quite good really to just
8:12
Speaker 1: have that community and have people who can kind of say, right,
8:16
Speaker 1: you know, this is how, this is how it is
8:19
Speaker 1: for me, this is what I'm doing, This is you know,
8:22
Speaker 1: whatever it might be. And like you said, you've had
8:25
Speaker 1: your stoma for quite a while now and call it Steve,
8:28
Speaker 1: but you did, you did sort of go between two names,
8:31
Speaker 1: if I'm right, Yeah.
8:33
Speaker 2: It was iliostomy Ian or stay Steve. My colostomy when
8:37
Speaker 2: I was four was called colostomy Colin. So we love
8:44
Speaker 2: a good name because I just like if the The
8:48
Speaker 2: reason why I named it, bear in mind the fact
8:51
Speaker 2: I'm nine and I came up with this and it's
8:53
Speaker 2: stuck with me, is because if I am going to
8:56
Speaker 2: live with this for the rest of my life. I
8:59
Speaker 2: want to give it its own persona because it is
9:02
Speaker 2: a part of me, and it's something that whether or
9:07
Speaker 2: not I like it, I'm stuck with it, and I
9:10
Speaker 2: may as well make light of the situation the way
9:12
Speaker 2: I can. And also it helps me to process it knowing, Okay,
9:18
Speaker 2: Steve's not very well. But then also instead of going
9:21
Speaker 2: my stone bag is really irritated, Y just go Steve's irritated.
9:26
Speaker 2: My friends, my family, my partner know exactly what I'm
9:30
Speaker 2: on about, and also so does Karen because she knows
9:33
Speaker 2: I call him Steve, and so do my surgeons. They
9:36
Speaker 2: don't refer to it as the Stonma. They refer to
9:39
Speaker 2: him as Steve because that's just what is stuck.
9:43
Speaker 1: I love that, though, because it makes yeah, like you
9:48
Speaker 1: said that, the situation lighter and the situation more human.
9:52
Speaker 1: I guess if you give someone or something a name
9:57
Speaker 1: rather than so say my stonebag or or whatever it.
10:00
Speaker 2: Might be, I feel like a lot of my life
10:03
Speaker 2: has been surrounded around medical terms, and it's just nice
10:09
Speaker 2: to give something that's referred to as a medical term
10:14
Speaker 2: a name, a comical name that you know, when I
10:17
Speaker 2: tell new doctors or something. They have a giggle and
10:21
Speaker 2: it's not just all morbid or this is the clinical
10:27
Speaker 2: way we're going to go about it. It just adds
10:31
Speaker 2: a bit of humor into the situation, which is how
10:35
Speaker 2: I handle situations as well, Like I can't process everything
10:41
Speaker 2: when it's all serious, Like there needs to be a
10:46
Speaker 2: level of humor with my doctors to be able to
10:48
Speaker 2: get on board with it, to understand that they see
10:51
Speaker 2: me and my bag as a person and not just
10:57
Speaker 2: another person on the operating table or taking one of
11:00
Speaker 2: their beds. Like it makes you stand out a bit
11:04
Speaker 2: more as well and feel more seen.
11:07
Speaker 1: Yeah, yeah, I think that's a great way of explaining it.
11:12
Speaker 1: And it's because it can get very easy to be
11:17
Speaker 1: defined by a condition or conditions and you go, oh, well,
11:23
Speaker 1: I'm search and such and I have hirsprungs, you know,
11:26
Speaker 1: rather than going I'm search and such and I do this,
11:30
Speaker 1: and I do that, and my talent is this and whatever.
11:33
Speaker 1: It's it's very very easy to be I guess with
11:37
Speaker 1: a condition like hirshprunks to be a little bit or
11:40
Speaker 1: consuming as well. And it can sort of because because
11:45
Speaker 1: it can, yeah, as you said, it is lifelong, you know,
11:49
Speaker 1: at the moment, there is no cure, but that doesn't
11:52
Speaker 1: mean that you can't be successful and go and live
11:57
Speaker 1: a very happy, healthy, you know, fulfilling life. So I
12:02
Speaker 1: think that's something that I think is really important to
12:06
Speaker 1: take away as well.
12:07
Speaker 2: Yeah, I agree. I mean I said, from a very
12:10
Speaker 2: young age, with everything medical wise that's going on, I
12:15
Speaker 2: said to you earlier that I grew up very quickly,
12:18
Speaker 2: but I told myself when I was younger that you know,
12:24
Speaker 2: this is your life, this is what you've got to
12:28
Speaker 2: deal with, so make the most of it and make
12:34
Speaker 2: your story memorable, which is another reason why I named
12:38
Speaker 2: my bag. Because a doctor can walk into a room
12:41
Speaker 2: and see a patient with Harshbungs disease, but they won't
12:45
Speaker 2: walk into a room every day and see a nineteen
12:49
Speaker 2: year old girl with stoney steve Like it makes your
12:52
Speaker 2: case more memorable, and in some way, I find that
12:57
Speaker 2: it makes the case they tend to listen to you
13:03
Speaker 2: a little bit more and think of you more as
13:05
Speaker 2: a human than a patient as well, and that I've
13:11
Speaker 2: found has really helped them when I'm in the hospital,
13:15
Speaker 2: to listen to me and to actually take on board
13:21
Speaker 2: what I'm saying and appreciate what I'm saying because I'm
13:24
Speaker 2: not a medical professional at all. But at the same time,
13:28
Speaker 2: I know my body, and I know when something's wrong
13:31
Speaker 2: and when something's not, no matter what, if my blood's
13:34
Speaker 2: come back clean, no matter what, if I'm I'm not
13:38
Speaker 2: throwing up, but I've got a blockage. Like when people
13:44
Speaker 2: listen to you and actually take on board what you're saying,
13:48
Speaker 2: it just makes a process so much easier. And by
13:53
Speaker 2: having that humor, it allows people to actually take on
13:56
Speaker 2: board what you're saying.
13:58
Speaker 1: Yeah, most definitely, I mean something I talk about a
14:00
Speaker 1: lot on here. There's a lot of people that I
14:04
Speaker 1: talk to are mothers of children with hirshprunks, and quite
14:07
Speaker 1: often they are not ignored necessarily, but they're sort of
14:12
Speaker 1: their concerns a sort of put to one side a
14:14
Speaker 1: little bit and like, oh, well, you know, it can't
14:16
Speaker 1: be hirschmungs because hirshrungs is so rare, et cetera, et cetera.
14:19
Speaker 1: But one thing I don't talk about, probably often enough,
14:22
Speaker 1: is the person with hirshprungs and their intuition, because that
14:28
Speaker 1: I think is something and I know you talked about
14:31
Speaker 1: in the last episode about the blockage and saying to
14:36
Speaker 1: saying to the hospital, Look, I have these symptoms. I
14:40
Speaker 1: know what's about to happen. I can't prove that it's
14:43
Speaker 1: happened because it hasn't happened yet, but it's about to
14:46
Speaker 1: happen because X, Y and Z has happened, has happened,
14:49
Speaker 1: and I've had those symptoms, and then being sort of
14:54
Speaker 1: dismissed all in a way, it's really not good at all.
14:59
Speaker 1: But need to take into account not just mother's intuition,
15:03
Speaker 1: but also when it comes to especially chronic illness like hirshprungs,
15:08
Speaker 1: patient intuition because as you said, you know your body
15:13
Speaker 1: better than anybody else. I mean it's again, with Hirshprungs
15:18
Speaker 1: being life long, you grow up with the condition. It's
15:22
Speaker 1: not like we're diagnosed well, apart from very extreme cases,
15:26
Speaker 1: it's not like we're diagnosed later on in our life
15:30
Speaker 1: like you might be with IBD or crones or IBS
15:35
Speaker 1: or something like that. We've grown up with this.
15:39
Speaker 2: We know.
15:41
Speaker 1: How things feel when they're right, and we know how
15:44
Speaker 1: things feel and when we're wrong. But I think having
15:48
Speaker 1: patient intuition is something that's also really important as well.
15:51
Speaker 2: Yeah, my patient intuition has been with me from a
15:56
Speaker 2: very young age. I used to tell my mum something's
15:59
Speaker 2: not right, and my mum would know that something is
16:03
Speaker 2: wrong because I knew my body from day dot and
16:08
Speaker 2: even now, like even there's sometimes I overthink it, but
16:12
Speaker 2: that's because of the trauma. But when something is wrong,
16:17
Speaker 2: I know what is about to happen. I know when
16:21
Speaker 2: a blockage is going to happen, and I can tell
16:25
Speaker 2: from the smallest twinge that it is. Like I can
16:28
Speaker 2: tell right now that I do have one, but it
16:31
Speaker 2: hasn't built up as much to be a case of
16:35
Speaker 2: diversion colitis because it's still in the early stages. But
16:39
Speaker 2: I know that I have one. And I think that's
16:43
Speaker 2: what doctors don't understand. Is it because I'm not displaying
16:48
Speaker 2: the symptoms as of yet. I can feel that they
16:52
Speaker 2: are going to happen because I know every twinge in
16:55
Speaker 2: my body and what it means when it comes to
16:58
Speaker 2: my hirshbrungs and my own a bag, and I can
17:03
Speaker 2: just tell immediately, And people just don't understand that as
17:10
Speaker 2: much like it's just my intuition. With my health over
17:17
Speaker 2: the years has just has gotten better and I know
17:23
Speaker 2: what I'm on about now, and even when I was
17:25
Speaker 2: nine and telling that doctor like, I've got a blockage
17:30
Speaker 2: and she's like, no, you diabet you don't. I'm nine
17:34
Speaker 2: and I'm telling you that I do. And then you
17:36
Speaker 2: run the tests and go, actually, yeah, you have got
17:38
Speaker 2: a build up, And surely that tells you something that
17:42
Speaker 2: at that age I could tell. And ten years down
17:45
Speaker 2: the line, I know my body even better now and
17:49
Speaker 2: I can tell before it even gets to the stage
17:51
Speaker 2: of hospital to hospitalization.
17:55
Speaker 1: So yeah, we know. And I think we, as Hirshprung's people,
18:02
Speaker 1: are quite sensitive to that kind of stuff as well.
18:05
Speaker 1: We can and often I say this as well, and
18:09
Speaker 1: I don't know if it's the same with you or
18:11
Speaker 1: anybody else, but in terms of dealing with pain, we
18:16
Speaker 1: often because we've been through so many surgeries, we've been
18:19
Speaker 1: through so many procedures, and we've felt, you know, lots
18:22
Speaker 1: of pain in our lives, we tend to be a
18:25
Speaker 1: lot better or our pain threshold tends to be a
18:28
Speaker 1: lot higher than everybody else in the world, just because
18:34
Speaker 1: of the just because of the procedures we've been through.
18:38
Speaker 1: Is that something similar with you?
18:40
Speaker 2: My pain tolerance is through the roof honestly. I mean
18:44
Speaker 2: I've got so many tattoos and piercings because I can
18:48
Speaker 2: handle it based off of everything that life has thrown
18:51
Speaker 2: at me. That is nothing compared to my health condition, surgeries, procedures,
19:02
Speaker 2: everything that I've gone through. It's just my pain tolerance
19:07
Speaker 2: is immaculate. I must say.
19:09
Speaker 1: Yeah, it takes an awful lot for us to, like,
19:14
Speaker 1: we could break various bones and have a lot of
19:19
Speaker 1: things that would send people into screaming fits because that
19:23
Speaker 1: would just really hurt. But for us, no, we just
19:29
Speaker 1: kind of it takes an awful lot, which is why
19:32
Speaker 1: again when you kind of go back to the first
19:34
Speaker 1: episode and we talked about the diversion colitis in twenty twenty,
19:38
Speaker 1: and he said, oh, I was screaming in pain. One
19:40
Speaker 1: of my thoughts there was, well, people with earth frongs
19:44
Speaker 1: have higher pain tolerance, so that must have been horribly
19:49
Speaker 1: painful for you to be not only in pain, but
19:52
Speaker 1: like really screaming out as well.
19:56
Speaker 2: I mean, my doctors compared it to labor, labor and delivery,
20:03
Speaker 2: So I mean, yeah, I've got such a high pain tolerance,
20:07
Speaker 2: but that was the most excruciating pain I have ever
20:11
Speaker 2: been in. It felt like I had ten knives being
20:17
Speaker 2: stabbed into my abdomen and everything was just bleeding out
20:22
Speaker 2: and like my body all the muscles just like started
20:26
Speaker 2: to go into shock. And yeah, that was excruciating, which
20:33
Speaker 2: is something considering how high of a pain tolerance I have.
20:37
Speaker 1: Yeah, yeah, I mean that that is unbelievable that you
20:43
Speaker 1: didn't go into some sort of You didn't have so
20:46
Speaker 1: much pain that you end up going into shock effectively,
20:48
Speaker 1: don't you. And I know you said you were very
20:51
Speaker 1: very close to setic shock, but just yeah, the pain
20:57
Speaker 1: tolerance is is really really interesting. I don't know whether
21:02
Speaker 1: there's ever been a study done on pain tolerance and
21:07
Speaker 1: Hirshbrung specifically, probably not, but it would be very interesting,
21:11
Speaker 1: very very interesting to know.
21:14
Speaker 2: I hope that one day they do carry that out
21:16
Speaker 2: and see how people with bow disorders and pain tolerance
21:23
Speaker 2: are because I feel like people with bow disorders generally
21:28
Speaker 2: do have a high pain tolerance and it would be
21:32
Speaker 2: interesting to see the results of it. So hopefully one
21:34
Speaker 2: day someone carries that out and we can talk about that.
21:39
Speaker 1: Yeah, well I do because I get messages from doctors.
21:43
Speaker 1: I had a message the other day from a guy
21:44
Speaker 1: at Doctor great Ormond Street, He said, always listen to
21:46
Speaker 1: a few episodes of the podcast. So if you're listening,
21:49
Speaker 1: then we'll do the study. Me and Jess will take part.
21:54
Speaker 1: We'll go through a lot of pain for you. Well,
21:57
Speaker 1: we'll we'll do it well. But it's yeah, it's interesting
22:03
Speaker 1: as well. And we talk about pain, and we talk
22:05
Speaker 1: about gut health, but gut health and the link to
22:09
Speaker 1: the brain is also something that is so so important.
22:13
Speaker 1: I know we talk a little bit about autism and
22:15
Speaker 1: bipolar in the last episode, but I know that you
22:20
Speaker 1: kind of feel strongly in the same way that I
22:22
Speaker 1: do that gut health and brain health are also really
22:27
Speaker 1: linked as well.
22:28
Speaker 2: Yeah, I believe that they go hand in hand completely,
22:33
Speaker 2: and they both affect each other. Brain health cand affect
22:38
Speaker 2: your physical health. Like if I get really stressed out,
22:42
Speaker 2: I my stone will stop working or I will just
22:47
Speaker 2: start to get the same pains that I would as
22:50
Speaker 2: if I had a blockage, but I know it's not
22:52
Speaker 2: a blockage, it's just the same pains. But then at
22:55
Speaker 2: the same time, if I have a blockage, say or
22:58
Speaker 2: I am in pain physically, then it affects mental health
23:02
Speaker 2: as well, because then I go into shock and I'm like, oh,
23:05
Speaker 2: my God, something bad's happening, or I get really upset,
23:08
Speaker 2: or it triggers PTSD. So they both go hand in
23:12
Speaker 2: hand with one another, and I think that that is
23:16
Speaker 2: so overlooked because mental health and physical health is still health,
23:22
Speaker 2: and it is still health conditions, and neither one should
23:28
Speaker 2: be looked down upon because they were equally as important
23:31
Speaker 2: as one another.
23:33
Speaker 1: Yeah, just because you can't see something, that doesn't mean
23:35
Speaker 1: it doesn't exist.
23:37
Speaker 2: Exactly. It's like it's like an invisible disability. Just because
23:40
Speaker 2: you can't see it doesn't mean that it doesn't exist.
23:42
Speaker 2: And then there's the exact same thing with mental health.
23:45
Speaker 2: Just because it's not physically displayed doesn't mean it is
23:49
Speaker 2: any less important.
23:52
Speaker 1: Yeah, very very true indeed. And then another subject that
23:56
Speaker 1: you brought up in the last episode, so genetics wise
24:01
Speaker 1: with Hirshbrungs. So again it kind of there's plenty of
24:05
Speaker 1: people I talked to who they display symptoms of Hirshprungs
24:10
Speaker 1: and they then or they have family history of Hirshprungs,
24:13
Speaker 1: but they're still then not diagnosed with Hirshprungs or they don't.
24:16
Speaker 1: Kind Of, you docs and the stone really necessarily look
24:21
Speaker 1: for it. Despite there being a family link, and you
24:24
Speaker 1: touched on in the last episode. We didn't quite have
24:26
Speaker 1: time to sort go into it. But there is a
24:31
Speaker 1: family link to Hirshprungs with you as well, doesn't there.
24:34
Speaker 2: Yes, so my dad had Hirschbrung's disease. I'm not aware
24:40
Speaker 2: that anyone in the family tree before him had it,
24:44
Speaker 2: but I know that he did, and he wasn't as
24:47
Speaker 2: severe as what my case was. He had to pull
24:51
Speaker 2: through a temperate colostomy bag and everything. And I was
24:56
Speaker 2: saying to you earlier that I drew the short straw
24:58
Speaker 2: because my brother, my older brother, doesn't have Harshbrongs disease,
25:03
Speaker 2: but I do, which defeats all odds because one, I'm
25:07
Speaker 2: a girl and we tend to get it less than males,
25:11
Speaker 2: and two because I'm the second born, so you would
25:15
Speaker 2: have expected the Hirshbrongs to be more prominent in the
25:18
Speaker 2: firstborn child of a parent with the hereditary Hirshbrongs condition.
25:24
Speaker 2: So very confusing family link. But yeah, that is the
25:30
Speaker 2: only person in my family that I'm aware of that
25:32
Speaker 2: has Harshbrongs disease as well.
25:34
Speaker 1: Yeah, I mean that's so strange how it bypass because
25:39
Speaker 1: anybody who knows my story knows that I'm second born
25:42
Speaker 1: as well, and I mean slightly. My older brother doesn't
25:46
Speaker 1: have Hirshprungs, which again I'm I'm very glad none of
25:49
Speaker 1: my brothers do. My two younger brothers don't have hirshprongs either.
25:52
Speaker 1: But there's a lot of people I talk to who
25:54
Speaker 1: are second born and who have Hirshprungs, and I do. Again,
26:02
Speaker 1: it's three in every four is the given terminology of
26:09
Speaker 1: people that have Hirshbrungs are male. So to be second
26:15
Speaker 1: born then be a sort of one in four of
26:19
Speaker 1: one in five thousand. Whatever that is maths wise, I
26:21
Speaker 1: don't know. It's a lot, but whatever that is, it's
26:26
Speaker 1: just the chances. And that's why I do sort of
26:30
Speaker 1: have some sympathy with doptiness, because they do kind of go, well,
26:33
Speaker 1: it's such a small chance. It could be anything and
26:38
Speaker 1: everything else, but it's such a small chance there that
26:42
Speaker 1: the child has Hirshbrungs. But it is. It's there's a
26:46
Speaker 1: lot of a lot of second born children who have Hirschbrungs. Again,
26:49
Speaker 1: I don't know if that's a that's the thing at all,
26:52
Speaker 1: No idea.
26:53
Speaker 2: Oh idea. I hope though, that at some point it
26:57
Speaker 2: gets studied to see what is more likely. Is it
27:01
Speaker 2: more likely that firstborn or second born is more likely
27:04
Speaker 2: to have Hirschbrong's disease, or if there even is a
27:07
Speaker 2: link at or if it's just genetics and the randomness
27:11
Speaker 2: that they can be sometimes with conditions. I find that
27:17
Speaker 2: really interesting though, that you're also second born and have it,
27:21
Speaker 2: And I wonder if there's more people like you and
27:24
Speaker 2: me that are have the same family pattern and why
27:29
Speaker 2: that is.
27:31
Speaker 1: Yeah, I mean there's a few people just off the
27:33
Speaker 1: top of my head that I've interviewed. In fact that
27:36
Speaker 1: the two actors I've interviewed, Zoe Coletti and Louis Healy,
27:41
Speaker 1: they're both second born. Zoe's the similar situation to you
27:44
Speaker 1: than the fact that she is second born, has an
27:47
Speaker 1: older brother, She's obviously female, has Hirshbrungs. You know, it doesn't.
27:53
Speaker 1: It's it's very odd how that happens. And I understand
27:59
Speaker 1: that they must be a link to a certain extent,
28:02
Speaker 1: because again, a lot of people I talk to it
28:04
Speaker 1: does sort of run in the family, But then there's
28:08
Speaker 1: an awful lot like me where it doesn't, and nobody
28:11
Speaker 1: else on either side of my family. So it's genetics
28:15
Speaker 1: is something that fascinates me and I think it always will.
28:17
Speaker 1: Ever since I started this and speaking to every doctor
28:22
Speaker 1: and nurse and people that I know, when we talk
28:25
Speaker 1: about genetics, they sort of give a similar answer is mostly,
28:30
Speaker 1: you know, we know this and this, but we don't
28:31
Speaker 1: really know all of it. And I think that's just
28:33
Speaker 1: going to be the way it is for yeah, a
28:36
Speaker 1: while a while, but hopefully, hopefully in however many years
28:41
Speaker 1: when I'm long retired from doing this podcast, will eventually
28:45
Speaker 1: eventually have found out of reason as to why things happen.
28:50
Speaker 1: But yeah, I mean, but your story, I know, we
28:53
Speaker 1: we touch on a little bit in the last episode,
28:55
Speaker 1: but there's so many other hearts to your story that's
29:01
Speaker 1: not just hirshprungs. And I guess one of the main
29:11
Speaker 1: underlying currents of this podcast is kind of showing people
29:16
Speaker 1: that yes, you may have hirshprungs, you may have other
29:19
Speaker 1: associated conditions, but you can still be very successful. You
29:25
Speaker 1: can still be you know, still do normal jobs, and
29:29
Speaker 1: can still relationships, et cetera, et cetera, but there is
29:33
Speaker 1: something that you're working on at the moment to do
29:36
Speaker 1: with nail tech? Am I right in saying that? Yes?
29:39
Speaker 2: So I was working in an office and unfortunately, with
29:46
Speaker 2: my health, I took some time off and they weren't
29:49
Speaker 2: very supportive at all. They suggested I do a phase return.
29:54
Speaker 2: Spoke to my doctor, he wrote phase return. I gave
29:57
Speaker 2: it to them and they were like, we can't accept this,
29:59
Speaker 2: and I was like, why you suggested it. They're like,
30:02
Speaker 2: all the summer attempts have gone. We need you your
30:05
Speaker 2: work full time again, and I'm like, but I'm not ready.
30:07
Speaker 2: I'm still not feeling very well. I need to come
30:10
Speaker 2: back part time for the time being. Oh no, we
30:13
Speaker 2: can't do that. So I was like, right, if you
30:17
Speaker 2: can't support what I need and what my doctor recommends,
30:23
Speaker 2: I cannot work with you. So I stopped working there.
30:27
Speaker 2: And I've always I've had a thing for nails anyway,
30:31
Speaker 2: because I enjoy doing my own and I like the
30:34
Speaker 2: creativity because I'm quite creative person. And I just thought
30:39
Speaker 2: to myself that with my condition and the unreliability of it,
30:45
Speaker 2: if I was my own boss and I am self employed,
30:49
Speaker 2: I don't have to be dictated to buy a company,
30:54
Speaker 2: and I can work with myself and my needs. So
30:58
Speaker 2: I am doing my core at the moment I'm training,
31:02
Speaker 2: and by the end of October I will be fully
31:06
Speaker 2: qualified now technician, but I will be self employed, my
31:10
Speaker 2: own business. And it feels like just a weight has
31:15
Speaker 2: been lifted off my shoulder because now I am obviously
31:19
Speaker 2: I need to be reasonable because I still need to
31:22
Speaker 2: make a living, but I am my own boss now
31:27
Speaker 2: and I am not having my needs subjected to by
31:35
Speaker 2: a big company that only see me as a figure.
31:39
Speaker 2: And that was really important to me because it made
31:44
Speaker 2: me realize that although it's scary doing my own business now,
31:50
Speaker 2: I also feel so much more secure knowing that I
31:54
Speaker 2: am not going to be belittled but because of my needs.
32:00
Speaker 2: Because even before my office job I had, I was
32:03
Speaker 2: working in a supermarket and even then they weren't very
32:07
Speaker 2: supportive as well at times, like I asked to go
32:10
Speaker 2: home at one point because I had a cold. And
32:14
Speaker 2: when I get like a cold or something, it doesn't
32:16
Speaker 2: affect me, it affects my stona bag to the point
32:19
Speaker 2: where they won't my bags won't actually stick to my skin,
32:24
Speaker 2: so I physically can't be work like lifting things and
32:29
Speaker 2: being in a supermarket working when my bag won't stick
32:33
Speaker 2: to me. So I told them that, and they had
32:36
Speaker 2: a big go at me, telling me that this is
32:38
Speaker 2: ridiculous and I need to get it under control. And
32:41
Speaker 2: I'm like, it's literally not my fault, but okay, and
32:44
Speaker 2: it's just those two experiences because they've been my only
32:47
Speaker 2: two jobs. And I was just like, I know that
32:52
Speaker 2: not a lot of people understand this condition, but at
32:55
Speaker 2: the same time, I still need support, whether you understand
32:59
Speaker 2: it or not. And that's when I just realized that
33:03
Speaker 2: being self employed is probably the best thing for me
33:06
Speaker 2: to do so that I don't run into those situations again.
33:13
Speaker 2: And so far it's working out for the better.
33:17
Speaker 1: I'm really glad to really glad to hear that. But again,
33:20
Speaker 1: it's understanding, isn't it. And I know you're not every employer,
33:26
Speaker 1: probably every employer Buy and Large is not going to
33:30
Speaker 1: understand when you mention the word Hirsprungs disease and you
33:33
Speaker 1: say I have hirshprungs. Nobody nobody's going to understand that,
33:36
Speaker 1: and I don't expect them to, you know. But then
33:40
Speaker 1: when you start talking about symptoms like the bag's not sticking, well,
33:44
Speaker 1: you kind of need the bag to stick in order
33:47
Speaker 1: to you know, not to put too fine a point
33:49
Speaker 1: on it, to be able to to work competently. Again,
33:55
Speaker 1: it doesn't take it, you know, if you explain that
33:58
Speaker 1: to an employer, it doesn't take a genius for them
34:01
Speaker 1: to work that out. You know that. Oh, actually that's
34:04
Speaker 1: you know. I mean, stonas are not massively uncommon. I
34:09
Speaker 1: think it's one one, very two hundred. I think that
34:11
Speaker 1: might just be a UK figure have stomas, so that
34:14
Speaker 1: they are. They're pretty prominent around the world and especially
34:18
Speaker 1: around the UK so too. You know, you might not
34:22
Speaker 1: understand what the stoner is or how it works, and
34:24
Speaker 1: that's fine, but probably have half an idea of what
34:28
Speaker 1: it is and what it does, and to know that
34:31
Speaker 1: if it's not if it's not performing as it should,
34:35
Speaker 1: then you know, again it's it's you knowing your own
34:40
Speaker 1: body and other people telling you that you don't, which
34:43
Speaker 1: which is really really wrong.
34:46
Speaker 2: Yeah, it just it was a horrible situation. Both situations
34:50
Speaker 2: were horrible to be in, and I just I think
34:55
Speaker 2: the problem is is that because although stone becoming more
35:03
Speaker 2: recognized now in society, not everyone still knows what they are.
35:08
Speaker 2: And don't get me started on Hirshbrong's disease, because no
35:12
Speaker 2: one has a clue what that is. So I think
35:17
Speaker 2: the fact that I've got two very serious components of
35:21
Speaker 2: my life that not a lot of people know about
35:24
Speaker 2: it makes it difficult for me to work for a
35:28
Speaker 2: company because they don't understand the extremity of my needs,
35:34
Speaker 2: which is why I came to the decision that self
35:36
Speaker 2: employed was probably the right thing for me to do.
35:40
Speaker 2: But I'm not saying that people with hirshbrongs or stone
35:43
Speaker 2: bags can't work for companies, because you definitely can. But
35:48
Speaker 2: in my own story, it didn't work for me, unfortunately.
35:54
Speaker 2: But then again, I've got stone bags look out for
35:57
Speaker 2: hirshbrong's disease, diversion, colitis, reoccurs, and many other factors, including
36:02
Speaker 2: mental health, and that's why I couldn't work for a
36:06
Speaker 2: company or a big chain. But people definitely can. But
36:13
Speaker 2: just in my story, it didn't work for me. And
36:16
Speaker 2: that's completely okay.
36:19
Speaker 1: Yeah, absolutely absolute. It's finding what works for you, I guess,
36:23
Speaker 1: isn't it. And it is a real shame that health
36:28
Speaker 1: in that particular scenario. I know there are a lot
36:31
Speaker 1: of companies that they're really, really good and they you know,
36:35
Speaker 1: really true employees well and understand that they may not
36:40
Speaker 1: understand the intricacies of the condition, but that you know,
36:45
Speaker 1: if their employee says I'm not well and this is
36:48
Speaker 1: the reason why, they you know, make provisions for it.
36:52
Speaker 1: But it is still a shame that in this day
36:54
Speaker 1: and age, we're still kind of having to explain to
36:59
Speaker 1: people as too, you know, this is this and I
37:02
Speaker 1: can't do my job because of this, or I'm trying
37:05
Speaker 1: to but it's going to be really difficult, and then
37:09
Speaker 1: the employer saying, well, effectively, get on with it. I
37:13
Speaker 1: don't really care, just in a more sort of flowery sense, Yeah,
37:18
Speaker 1: but it's yeah. But hopefully again, as time goes on,
37:22
Speaker 1: we might get to a point where hopefully everybody, you know,
37:27
Speaker 1: it's a lot more understanding of each other. I think
37:29
Speaker 1: it's what we're looking.
37:29
Speaker 2: For, hopefully. Yeah, I just I hashbugs is obviously a
37:36
Speaker 2: very difficult thing to deal with, but I think it's
37:40
Speaker 2: important for people to understand that it's a big factor
37:45
Speaker 2: of your life, but it doesn't define you or limit
37:48
Speaker 2: what you can do in life. Like there are many
37:52
Speaker 2: things that people didn't think I could do because I
37:55
Speaker 2: have a bag or because I have Hashbung's disease. Well,
37:58
Speaker 2: an actual fact, I did like being able to play
38:01
Speaker 2: rugby for five years, or I was able to go
38:05
Speaker 2: on school trips, which without my bag I wouldn't have
38:08
Speaker 2: been able to have do done because I couldn't move
38:11
Speaker 2: off my bed or the sofa or anything. Being able
38:16
Speaker 2: to go abroad and have a holiday. It's simple things
38:21
Speaker 2: like that that people don't realize. It's such a difficult
38:26
Speaker 2: thing but for us to do, but at the same
38:30
Speaker 2: time being able to do it is such a huge achievement.
38:34
Speaker 2: And you shouldn't limit yourself and be like, I can't
38:39
Speaker 2: do that because I've got hash brungs, So I can't
38:41
Speaker 2: do that because I've got back. As long as you
38:44
Speaker 2: take the right precautions, you can do anything you want.
38:48
Speaker 2: It doesn't define you at all. It's just a part
38:53
Speaker 2: of who you are.
38:55
Speaker 1: Yeah, yeah, it's it's fine. Yeah, I precautioned is one
39:04
Speaker 1: of the big things you prepare or prepare probably not
39:06
Speaker 1: precaution prepare, it's probably a better way of putting it.
39:10
Speaker 1: And for people being aware of their condition, absolutely know
39:14
Speaker 1: about your condition, brilliant, but to not say well, actually
39:20
Speaker 1: this is who I am and you know, I can't
39:22
Speaker 1: do anything because of this or that or the other.
39:24
Speaker 1: And I understand everyone's different, but that was one of
39:28
Speaker 1: the reasons through why I wanted to set this up
39:30
Speaker 1: and especially why I wanted to talk to you as well,
39:32
Speaker 1: because it's it's finding you know, people who go Actually,
39:38
Speaker 1: I've achieved this. I've achieved that even though I've been through.
39:42
Speaker 1: If anyone's listened to part one a lot, I'll put
39:45
Speaker 1: it that way, and if you if you haven't listened
39:47
Speaker 1: to part one, please go and listen to part one,
39:49
Speaker 1: because it is It's a wild story, isn't it. It's
39:54
Speaker 1: a wild story. But does it does it feel does
39:58
Speaker 1: it feel like a slightly off topic here? But does
40:01
Speaker 1: it feel like a wild story to you now that
40:04
Speaker 1: you've sort of retold it, or is it just kind
40:05
Speaker 1: of like, well, it happened to me, and you know.
40:09
Speaker 2: It is a wild story. And sometimes it does make
40:13
Speaker 2: me giggle how much I've gone through, just because I'm like, wow,
40:17
Speaker 2: I've gone through so much and I'm still here carrying
40:22
Speaker 2: on and I'm still alive, and it makes me really grateful,
40:27
Speaker 2: and you know, at the end of the day, stuff happens.
40:33
Speaker 2: But that's my story and I'm proud of it.
40:38
Speaker 1: Yeah, absolutely, And I think that's an excellent point for
40:41
Speaker 1: us to wrap up on. And I know I didn't
40:44
Speaker 1: do this in the previous part one, but now I've
40:47
Speaker 1: see you are showcasing a lot of your work on
40:51
Speaker 1: sort of TikTok and whatnot. So where can people find
40:54
Speaker 1: you keep up to date with everything that's going on, Either.
40:59
Speaker 2: TikTok or Instagram it's normally Jess Harris five.
41:04
Speaker 1: Really fantastic, nice and simple to remember.
41:07
Speaker 2: Nice and simple.
41:09
Speaker 1: Well, thank you so much for for doing two episodes.
41:13
Speaker 1: It has been it has been a pleasure to meet
41:16
Speaker 1: you and to listen to your story. And I'll say
41:19
Speaker 1: exactly the same as I said in the first part.
41:21
Speaker 1: I wish you the very best with the new business
41:24
Speaker 1: and of course your health.
41:26
Speaker 2: Thank you very much.
41:31
Speaker 1: Thank you for listening and being part of this growing community.
41:34
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
41:37
Speaker 1: leave a review and share it with someone who might
41:40
Speaker 1: need it. You can connect with us on social media
41:43
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's podcast.
41:48
Speaker 1: See you next week. S