Latest / Tom's Hirschsprung's Podcast / Episode 99 - With Jess Harris (Part 1)

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Episode 99 - With Jess Harris (Part 1) · Tom's Hirschsprung's Podcast

0:03
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
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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
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Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in. Hello, and welcome to episode ninety nine of
0:49
Speaker 1: Tom's Hirshbrungs Podcast. I am delighted to rejoined this morning
0:55
Speaker 1: by Jess. Welcome Jess Bhi, Thanks so much. Because it on,
1:01
Speaker 1: we are going to talk through your unique it's probably
1:05
Speaker 1: the right word to put it, hirshprung story. I know
1:09
Speaker 1: everybody's is unique to a certain extent, but there's certainly
1:13
Speaker 1: more going on in some stories than others. So we
1:16
Speaker 1: are we're going to chat through. We're going to chat
1:20
Speaker 1: through your story all about Hirshbrungs and various other bits
1:25
Speaker 1: and pieces should we put them that have happened in
1:28
Speaker 1: your life as well. But I guess it's up to
1:33
Speaker 1: you really where you'd like to start from.
1:37
Speaker 2: Well, I guess we can start right from the very
1:41
Speaker 2: beginning cool. So I was born at the end of
1:44
Speaker 2: two thousand and five, and I experienced from birth through
1:53
Speaker 2: being a couple of weeks old, I wasn't feeding properly
1:59
Speaker 2: and uh my, like I would get constantly constipated. My
2:04
Speaker 2: mom didn't know what quite what to do with herself,
2:07
Speaker 2: and she was like, oh, you know, maybe it's an intolerance.
2:11
Speaker 2: So we had an intolerance check done and it came
2:16
Speaker 2: back all clear. So she was super concerned, like, I
2:21
Speaker 2: don't know what's going on then if she's not got
2:24
Speaker 2: an intolerance. So we had a few like doctors visits
2:30
Speaker 2: as you would, but I was getting constantly distended, so
2:35
Speaker 2: I had like a proper little pot belly even though
2:38
Speaker 2: I'm like tiny little baby, and even when I was
2:41
Speaker 2: a young kid as well, I had one. So they
2:45
Speaker 2: were really confused as to what it was because they
2:48
Speaker 2: were like, well, she's not got any allergies or anything,
2:51
Speaker 2: so okay, we'll just keep monitoring her. So this carried
2:57
Speaker 2: on for like a year, and then on my first
3:02
Speaker 2: birthday in two thousand and seven, no, on my first birthday,
3:07
Speaker 2: not seven, two thousand and six, we spent two and
3:11
Speaker 2: a half weeks where I was on the sofa I
3:15
Speaker 2: couldn't eat properly, couldn't sleep properly, and I couldn't move properly,
3:21
Speaker 2: so I was basically bedbound. And I remember my mom
3:26
Speaker 2: telling me that my first birthday was spent just on
3:30
Speaker 2: the sofa watching Disney films because I just couldn't participate
3:35
Speaker 2: in any activities whatsoever, which she was so upset about
3:42
Speaker 2: because obviously, your child's first birthday, you wanted to be
3:46
Speaker 2: happy and full of memories, and I just there wasn't
3:50
Speaker 2: any happiness about it, so she found that quite difficult.
3:54
Speaker 2: I didn't have a clue what was going on, so
3:56
Speaker 2: I didn't I didn't think much of it, but yeah,
4:01
Speaker 2: I wasn't eating for two and a half weeks, and
4:03
Speaker 2: then two thousand and seven came. We checked for intolerances
4:08
Speaker 2: again none again, and then we did some blood tests
4:14
Speaker 2: and they all came back completely clear. So then they
4:20
Speaker 2: started me on the dreaded movecle, which never went well
4:27
Speaker 2: and there wasn't much of a change, so they were
4:33
Speaker 2: getting like really concerned. And then the picklacs came in,
4:38
Speaker 2: so I was dosed up on that every day, and
4:43
Speaker 2: then towards the end of seven I had my first
4:47
Speaker 2: biopsy and first anal stretch. So bear in mind the
4:53
Speaker 2: fact that I'm I'm not even two by this point
4:58
Speaker 2: and I'm already having that done. It was quite overwhelming
5:02
Speaker 2: on my family, and I didn't have a lot of
5:05
Speaker 2: family nearby because my grandparents were all over the place
5:10
Speaker 2: because my granddad was in the army, so they were
5:13
Speaker 2: in Germany or Scotland or Somerset, Blamford or in another country.
5:18
Speaker 2: So it was basically my mum and my dad and
5:23
Speaker 2: my aunt who were primarily around to help with all
5:28
Speaker 2: of that. But my mom was a full time teacher,
5:31
Speaker 2: so even then she would try and get as much
5:35
Speaker 2: time off as she could, but there's only so much
5:38
Speaker 2: you can get off with that kind of career. But
5:41
Speaker 2: she did everything she could. And then in eight we
5:49
Speaker 2: got my biopsy results back and they came back inconclusive.
5:55
Speaker 1: Yeah, I know what you want, no, I know.
6:01
Speaker 2: And then they because of that, they were like, okay,
6:04
Speaker 2: we're going to up your mothercle. So I was on
6:06
Speaker 2: four sachets a day. I know, I'm three at this
6:12
Speaker 2: point as well. I had no idea what it was.
6:15
Speaker 2: I do remember when I was like four years old,
6:19
Speaker 2: my mum took me to the dentist and I had
6:22
Speaker 2: a little movecle Sachhet and I'd only drink it in
6:25
Speaker 2: a milkshake. I wouldn't drink it with anything else, So
6:29
Speaker 2: that's all I remember from that, but it tasted horrible.
6:34
Speaker 2: So after that and there was no change. I then
6:38
Speaker 2: had my second anal stretch and biopsy. At this point
6:45
Speaker 2: I'm three. The biopsy results came back inconclusive once again,
6:53
Speaker 2: I know. So then they decided that they were going
6:57
Speaker 2: to give me an enema every day, so that was fun,
7:04
Speaker 2: and that had no effect whatsoever. Nothing was working, nothing
7:08
Speaker 2: was passing, and at that point the blockages started to happen.
7:14
Speaker 2: So nothing was happening, and because of that, I wasn't eating,
7:18
Speaker 2: I wasn't drinking properly, which obviously you need to drink
7:23
Speaker 2: a lot with harshbrungs because you get twice as dehydrated
7:28
Speaker 2: as the average person.
7:30
Speaker 1: So I didn't know that. I knew we were more
7:34
Speaker 1: dehydrated than the most, but I didn't realize it was
7:37
Speaker 1: that much.
7:38
Speaker 2: No, you get dehydrated twice as much as the average person.
7:42
Speaker 2: So fun fact.
7:45
Speaker 1: Fun as sat so fun.
7:47
Speaker 2: And so after the blockages started up again, Picklax was
7:54
Speaker 2: then introduced so that was fun, and then they were
8:01
Speaker 2: really concerned, so like, we don't know what to do.
8:04
Speaker 2: So then they referred me to irridology, which was like
8:10
Speaker 2: herbal medicine, which didn't do much. And then I also
8:17
Speaker 2: saw kinsology, so we did that and nothing really came
8:26
Speaker 2: out of it, and my health just started to deteriorate
8:32
Speaker 2: even more, and my surgeon decided that he was going
8:37
Speaker 2: to do a lateral sphincter op to me, so we
8:41
Speaker 2: had that done. They removed all of my medication, so
8:47
Speaker 2: I wasn't on Picklax or move cult anymore or the enema.
8:52
Speaker 2: We were just free wheeling it at this point, and
8:58
Speaker 2: we had a lot of blood taken, which I hated.
9:02
Speaker 2: That was not my thing in a hospital, and there
9:07
Speaker 2: was detected to sell abnormalities from the surgery. So because
9:13
Speaker 2: of this, they requested a second opinion, and in my notes,
9:19
Speaker 2: I couldn't read it properly, but I think it says
9:21
Speaker 2: Guy's hospital.
9:23
Speaker 1: I mean, yeah, that would make sense.
9:28
Speaker 2: So we had a second opinion from them. They didn't
9:32
Speaker 2: really give much a response. They didn't really take part
9:38
Speaker 2: in this at all. So we moved on from that
9:43
Speaker 2: and I ended up being admitted for observation from my surgeon,
9:49
Speaker 2: and I stayed there for a little while and they
9:53
Speaker 2: just monitored how I was realized that I started to
9:57
Speaker 2: get really distended really quickly, and because of my type
10:04
Speaker 2: of Harshbunks, I can't pass anything myself. So it was
10:09
Speaker 2: a proper struggle because I wouldn't, I couldn't, I couldn't
10:12
Speaker 2: help myself at all, and no one knew what was
10:15
Speaker 2: going on. So after that, my mum decided that she
10:21
Speaker 2: wanted to take some action and she wanted to send
10:25
Speaker 2: off my biopsies and to sell abnormalities to Great Ormond
10:31
Speaker 2: Street for a second opinion. They reduced my meds again
10:38
Speaker 2: during this process, so which didn't help. And then Great
10:44
Speaker 2: Omens suggested that there was traces of Harshbunks disease.
10:51
Speaker 1: So how old are you at this point?
10:54
Speaker 2: Then I am three years old, so nearly four at
10:59
Speaker 2: this point, and.
11:02
Speaker 1: You haven't been diagnosed necessary with Herstroms still at this point.
11:06
Speaker 2: No, this was just a second opinion. So then my
11:11
Speaker 2: doctors had to go away and take all my bik
11:15
Speaker 2: Sea's test again and everything, and during that time, my
11:23
Speaker 2: surgeon suggested a do ham or pull through, so I
11:28
Speaker 2: had that done just before my fourth birthday, and in
11:33
Speaker 2: my surgeons twenty one years of working, he had never
11:38
Speaker 2: had a perforation and leakage and I was the first
11:42
Speaker 2: one that he'd had and it happened three days after
11:46
Speaker 2: my surgery, So then we had to have a clo.
11:53
Speaker 2: We had to close with a colost to me. So
11:55
Speaker 2: I had a colost tom me before my fourth birthday,
12:00
Speaker 2: which was fun, so my mum had to deal with that,
12:03
Speaker 2: and then they after all the biabsues that it had
12:07
Speaker 2: done at Southampton, it was finally diagnosed that I had
12:11
Speaker 2: Hirshbrungs disease. So we've had a lot there. Finally got
12:16
Speaker 2: a diagnosis and then a couple it wasn't even that long.
12:23
Speaker 2: It was a couple of months or about a year
12:26
Speaker 2: after I had my costomy. They decided to reverse it again,
12:31
Speaker 2: so we had that reversed and we went back to
12:35
Speaker 2: the movcle and the picklaps and the at home rector irrigation,
12:44
Speaker 2: so we did all of that and it wasn't working
12:48
Speaker 2: because the problem with me was that my Hirshbrungs was
12:53
Speaker 2: obviously in the colon as normal, but also in the
12:59
Speaker 2: anal sphinx. So because of that I couldn't pass water,
13:06
Speaker 2: let alone anything else. So the at home irrigation systems
13:12
Speaker 2: they didn't work because it would get trapped inside my body,
13:16
Speaker 2: so and that would lead to a lot of immunity
13:20
Speaker 2: issues because I couldn't prevent myself from more the bacteria
13:23
Speaker 2: building up, so I was constantly in pain. I remember
13:28
Speaker 2: I was starting school and I had to carry like
13:32
Speaker 2: a little wheati bag around with me because the pain
13:37
Speaker 2: was just immense, and I'd have to in my break times,
13:43
Speaker 2: I'd have to go and take my medication, and then
13:45
Speaker 2: I go and play for a little bit, and then
13:47
Speaker 2: I'd go back into class. And that was just the
13:51
Speaker 2: cycle for years. And I would constantly have like random leakages.
14:00
Speaker 2: So where we'd done the irrigation, I would randomly have
14:03
Speaker 2: spurts where it would be able to come out, but
14:08
Speaker 2: in small doses. So I my mum was telling me
14:13
Speaker 2: about how when I was younger, I wanted to be
14:16
Speaker 2: able to wear normal underwear and trousers like other people,
14:21
Speaker 2: but I couldn't because I was having up to six
14:24
Speaker 2: accidents today where the irrigation was finally doing something, but
14:30
Speaker 2: it wasn't passing everything. So that was quite fun and
14:37
Speaker 2: then luckily my school were amazing and they actually made
14:43
Speaker 2: a functioning disabled toilet with a shower for me, so
14:49
Speaker 2: we got some funding for that. And then when I
14:52
Speaker 2: was in year four, so I was nine, they decided
14:56
Speaker 2: that that was enough and the irrigation's not working. Okay,
15:03
Speaker 2: we're going to get We're going to have a stoma
15:05
Speaker 2: bag put in. So then Stoma Steve was born. That
15:10
Speaker 2: is his name, and it has stuck for ten years.
15:13
Speaker 2: So yeah, he came into life, which was it was
15:21
Speaker 2: a life changing. Honestly, I don't think I would have
15:24
Speaker 2: been able to have survived the way that I had
15:27
Speaker 2: done if it had continued, and also the developmental issues
15:33
Speaker 2: that it would have caused, so glad we got that.
15:38
Speaker 2: And then in the same year, so it was the
15:42
Speaker 2: summer that I was just about to get my bag,
15:48
Speaker 2: I was talking to Karen, Karen Dix, and she was
15:52
Speaker 2: talking about the fundraising that she's doing for the hush
15:56
Speaker 2: Burns Family Connections. And every year my school would do
16:01
Speaker 2: a fundraising event, so we each year group would pitch
16:08
Speaker 2: what charity they wanted to do. You know, everyone comes
16:11
Speaker 2: up with like cancer research and Salvation ARMI and everything.
16:16
Speaker 2: And I'm nine and I decided to put forward Hashbrong's
16:21
Speaker 2: Family Connections. I pitch it, I do an assembly about it,
16:26
Speaker 2: and it's the chosen charity of the year. I can't
16:32
Speaker 2: remember how much we raised, to be honest with you,
16:35
Speaker 2: but we did an event day where you could throw
16:38
Speaker 2: wet sponges at the teachers and there was races and everything,
16:43
Speaker 2: and we raised enough money to be able to give
16:47
Speaker 2: to Hashbrong's Family Connections. And I cannot remember for the
16:51
Speaker 2: life of me what museum it was, but in this
16:54
Speaker 2: museum they have a whole section about the bow. So
17:00
Speaker 2: ended up taking me and a group of other children
17:03
Speaker 2: with Hirshbrungs and crones to this museum and we learnt
17:10
Speaker 2: about how the digestive system is meant to work and
17:14
Speaker 2: how our system works, so the difference between it, and
17:19
Speaker 2: you got to like see all these models and walking
17:24
Speaker 2: through this like Intestine cove and learn all about it.
17:28
Speaker 2: And then Karen was like, this is where this is
17:31
Speaker 2: where your horsprungs is and everything. So I don't know
17:35
Speaker 2: how much the kids stuck on board at that point.
17:38
Speaker 2: I don't remember a lot, and I was nine and
17:40
Speaker 2: a lot of the kids that were there were like five,
17:43
Speaker 2: So but yeah, I do remember going there, and I
17:48
Speaker 2: do remember that that was really insightful to learn about
17:52
Speaker 2: and actually image because I think the problem with being
17:57
Speaker 2: a child with hirshbrongs is that you don't actually stand
18:00
Speaker 2: what's going on. You just know that something's wrong and
18:06
Speaker 2: you're not fully aware of everything. So to be able
18:10
Speaker 2: to visually put that into perspective was a good learning
18:17
Speaker 2: situation for young people, and I feel like that would
18:21
Speaker 2: be really good like nowadays as well. So raising money
18:27
Speaker 2: for the same charity to be able to redo that
18:29
Speaker 2: same intervention that we did would be really helpful for
18:34
Speaker 2: that kids learn about what's going on inside their body.
18:41
Speaker 2: So then after that, I got my stone bag and
18:51
Speaker 2: it was all working pretty well. To be honest, it
18:53
Speaker 2: was going really well. And then about a year later,
18:57
Speaker 2: when I was ten, I had my first blockage and
19:03
Speaker 2: I went to poor hospital for it, and it was
19:07
Speaker 2: the worst experience. I remember it, and I remember my
19:13
Speaker 2: mum having to tell one of the doctors how to
19:19
Speaker 2: put in a canular because they couldn't do it, and
19:23
Speaker 2: how to take my blood pressure because they were trying
19:25
Speaker 2: to do it down here. So my mom had to
19:29
Speaker 2: teach this nurse how to take my blood pressure and
19:32
Speaker 2: put in a canular because she couldn't do it, and
19:35
Speaker 2: same with another doctor, and we kept on telling her
19:40
Speaker 2: it's a blockage and they were like, no, it's not.
19:44
Speaker 2: And my mom was trying to push for it and
19:47
Speaker 2: was like, no, but it is. Nothing's coming out of
19:49
Speaker 2: the stoma. If it is, then it's all liquid and
19:53
Speaker 2: it's just something's wrong. She's getting really distended, which we
19:58
Speaker 2: haven't had a tool since we've had the So Paul
20:02
Speaker 2: did all their tests and everything and they were like, yeah,
20:05
Speaker 2: oh yeah, it is actually a blockage. We're going to
20:07
Speaker 2: send you to Southampton to do that. So then we
20:12
Speaker 2: got moved from Paul all the way to Southampton just
20:15
Speaker 2: so that they could clear my blockage. And unfortunately, the
20:20
Speaker 2: only way that I can have a clear or a
20:24
Speaker 2: wash out is if I'm under anesthesia, because if I'm awake,
20:30
Speaker 2: the muscles won't work properly and I can't actually physically
20:34
Speaker 2: pass it, so they have to put me out to
20:37
Speaker 2: suction everything. And that's the only way that we've ever
20:40
Speaker 2: been able to do it. So I had that done
20:44
Speaker 2: and everything was going pretty smoothly. Then I had my
20:52
Speaker 2: Stone nurse in Bournemouth. Emma. She was amazing. I'd see
20:58
Speaker 2: her every year just to check up. Occasionally my stoma
21:05
Speaker 2: would like get a small blockage, it wasn't major or
21:11
Speaker 2: you know, I'd get the rashes and everything around it,
21:13
Speaker 2: which we were told was normal. But that was nothing
21:17
Speaker 2: compared to what I'd experienced as a child with the
21:20
Speaker 2: blockages and the pain and the distension of the stomach.
21:25
Speaker 2: So we just took that with a pinch of salt.
21:29
Speaker 2: And then in twenty twenty I had my traught, big trauma.
21:39
Speaker 2: So I it was later. I'd been experiencing pain and
21:47
Speaker 2: discomfort and I was like, I think it's blockage again,
21:53
Speaker 2: and I was like, do you know what, I'm just
21:55
Speaker 2: gonna wait and see. So I held on and then
21:59
Speaker 2: I'd just remember this night so vividly. I woke up
22:03
Speaker 2: in immense pain, flipped open my bed sheets and there
22:08
Speaker 2: was blood everywhere, all over the bed and it was
22:12
Speaker 2: all down my legs, and I was crawling from my
22:16
Speaker 2: room to my mum because I was shouting and no
22:18
Speaker 2: one could hear me because I'm on the other side
22:20
Speaker 2: of the house and it was pitched back dark. No
22:24
Speaker 2: one was there, so I had to crawl on my
22:27
Speaker 2: hands and knees to my mom's room because I couldn't walk,
22:30
Speaker 2: and I was like, Mum, something's really wrong. I'm bleeding
22:34
Speaker 2: and I'm in such pain. So we had to go
22:41
Speaker 2: to Southampton in a in emergency and I was screaming
22:46
Speaker 2: the whole way there. When we got into the A
22:51
Speaker 2: and E, the person was trying to wave us off.
22:54
Speaker 2: She was like, yeah, just go and sit down. So
22:57
Speaker 2: while my mom was talking, I was sat down on
22:59
Speaker 2: this chair and then when the woman was like, no,
23:03
Speaker 2: just go and sit down, someone or call you in
23:04
Speaker 2: a minute, I screamed because I had only been sat
23:09
Speaker 2: left two minutes and I had already covered the whole
23:12
Speaker 2: chair in blood. And the woman at reception looked over
23:16
Speaker 2: from me and was like, oh my god, she needs
23:19
Speaker 2: to go through right now. So they called someone to
23:22
Speaker 2: bring me through, and I was screaming so much. I
23:28
Speaker 2: remember this one nurse going, oh my god, the amount
23:32
Speaker 2: of pain she's in. I thought she was in labor
23:34
Speaker 2: or something the screams. So they had to check. I
23:40
Speaker 2: had to wear one of those like adult nappies because
23:44
Speaker 2: I was bleeding through everything. Within five minutes, everything was covered,
23:51
Speaker 2: so then they had to test me to be able
23:54
Speaker 2: to see because I'd lost so much blood if I
23:57
Speaker 2: needed more. And then they did some tests and they
24:05
Speaker 2: were like, you've got a severe case of diversion colitis
24:11
Speaker 2: and if we don't do something about it, then in
24:14
Speaker 2: twenty minutes you're going to go into septic shock. So
24:20
Speaker 2: we did a bunch of tests and everything and procedures,
24:24
Speaker 2: and then the next day I had my big blockage
24:30
Speaker 2: removal and when I came out, they were like, we're
24:37
Speaker 2: lucky that we caught this, because if you hadn't come
24:40
Speaker 2: in when you did, you might have not made it
24:42
Speaker 2: through the night. So that terrified me, and we stayed
24:50
Speaker 2: in the hospital for a little while just so they
24:52
Speaker 2: could observe me and check that everything was going is planned. Afterwards,
24:59
Speaker 2: stoma finally started working again, which was good, and we
25:07
Speaker 2: it was severely traumatic and I ended up with complex
25:13
Speaker 2: PTSD because of it, and I had to do for
25:16
Speaker 2: about six months EMDR light therapy to help. It changed
25:25
Speaker 2: my perspective on the opinion, because to begin with with
25:29
Speaker 2: the whole PTSD thing, you think, oh my god, that
25:33
Speaker 2: was a near death experience. I feel like so much
25:37
Speaker 2: is going on inside my head and I don't know
25:39
Speaker 2: how to process it, and then you get overwhelmed. But
25:42
Speaker 2: instead that made me think that what I did was
25:46
Speaker 2: the right thing. Yes, it would have been catastrophic if
25:51
Speaker 2: I didn't, but because I did, and because the doctors
25:56
Speaker 2: saw in how bad of a state I was in,
26:00
Speaker 2: that I did survive it and I was in the
26:02
Speaker 2: right hands, and that this won't happen again and it'll
26:08
Speaker 2: be fine. And then a two years later I had
26:15
Speaker 2: a less severe blockage, so the same thing again. I
26:21
Speaker 2: wasn't bleeding this time properly. The reason I was bleeding
26:27
Speaker 2: was because my blockage had perforated my bow, So thankfully
26:33
Speaker 2: this time we didn't have that, but I still had
26:36
Speaker 2: to go in and have a wash out under anesthesia.
26:44
Speaker 2: Since I had my stonma bag. We'd basically been doing
26:47
Speaker 2: that anyway, like every two years, just because I'd start
26:51
Speaker 2: to get the symptoms back and then they're like, right, okay,
26:54
Speaker 2: we need to prevent this, so then we do wash
26:56
Speaker 2: out and that's just kind of been a routine procedure,
26:59
Speaker 2: but was just we missed that year and that's when
27:05
Speaker 2: it led to being completely catastrophic. So we've learned from
27:12
Speaker 2: that that we don't leave it long enough that we
27:16
Speaker 2: have to do something about it. So yeah, we have
27:22
Speaker 2: learned from that. And then since then I have I've
27:30
Speaker 2: had my autism diagnosis, which I don't know if a
27:35
Speaker 2: lot of people know that autism is actually quite common
27:40
Speaker 2: in people with bow disorders because of the developmental issues
27:48
Speaker 2: that you have. So that was really refreshing. And to
27:53
Speaker 2: be fair, my doctor was like, because I saw my
27:55
Speaker 2: nurse Karen and I told her about it, and she
27:59
Speaker 2: was like, I'm not prized I had my I had
28:02
Speaker 2: my hunt for a little while, just because of how
28:06
Speaker 2: I reacted to doing things Like I remember when I
28:10
Speaker 2: was young and we had to do a manual wash
28:14
Speaker 2: out and I wasn't under anesthesia. I was like, it
28:19
Speaker 2: was me, my mom, and two doctors are locked in
28:21
Speaker 2: a big disabled toilet and I was like screaming and
28:26
Speaker 2: having a fit and they were trying to do this
28:33
Speaker 2: wash out. And she was like, from that moment on,
28:35
Speaker 2: I just knew that you were because of the way
28:38
Speaker 2: that you handle things and the way that you process
28:41
Speaker 2: this kind of stuff. So that was refreshing to finally understand.
28:47
Speaker 2: And then this August, I started to have symptoms of
28:54
Speaker 2: a blockage. I went into Bournemouth Hospital and I was like,
28:59
Speaker 2: I'm having some terms of blockage. I've had this many
29:02
Speaker 2: times before. They were like, no, you're not, and I'm like,
29:04
Speaker 2: yes i am. They were like, yeah, but you're not
29:06
Speaker 2: being sick and your stone's still working, and I'm like, yes,
29:09
Speaker 2: but I've never had those symptoms except the time in
29:13
Speaker 2: twenty twenty when my bag did stop working. But whenever
29:17
Speaker 2: I've had a blockage, that's never been my symptoms. No, like,
29:22
Speaker 2: I just don't understand because everyone has those symptoms. And
29:25
Speaker 2: I was like, yes, but I don't, but I'm telling
29:27
Speaker 2: you that I do have one. So they didn't believe
29:32
Speaker 2: me and they sent me home. So I went back
29:34
Speaker 2: the next day to speak to my stoniners and she
29:39
Speaker 2: was like, if you think that something's wrong because your
29:41
Speaker 2: stone is working, but I know your file and if
29:46
Speaker 2: you're in pain and it's the same pain that you
29:50
Speaker 2: feel whenever you have a blockage, go to Southampton. So
29:57
Speaker 2: I called up Karen and I was like, I'm coming in.
30:00
Speaker 2: She was like okay, brilliant, Okay again. So we went
30:04
Speaker 2: in again. And this was my first time in adults
30:09
Speaker 2: because I've always been impedes having this done and my
30:14
Speaker 2: first doctor was like, yeah, okay, we're going to do
30:16
Speaker 2: like a rector exam and everything. Then we're going to
30:19
Speaker 2: do an X ray. And then my second doctor came
30:22
Speaker 2: in for the night shift and she was like, we're
30:24
Speaker 2: not going to do any of that and I'm going
30:25
Speaker 2: to send you home. And I was like, but I'm
30:28
Speaker 2: still in pain. She was like, yeah, I know, but
30:33
Speaker 2: I'll send you home and we'll book for you to
30:35
Speaker 2: have a surgery done. So I was like, right, okay, whatever.
30:38
Speaker 2: And then I had to take a lot of time
30:41
Speaker 2: off work for the stress because I was like, oh
30:45
Speaker 2: my god, no one's doing anything, it's going to build
30:47
Speaker 2: up and I'm going to have the same as what
30:49
Speaker 2: I had in twenty twenty. So I was really stressed out.
30:53
Speaker 2: I wasn't working because I was just an emotional wreck,
30:57
Speaker 2: and the pain as well. I just I couldn't stand up.
31:02
Speaker 2: My partner, bless him, he was cooking for me every night,
31:07
Speaker 2: making my lunches for the next day because he had
31:10
Speaker 2: to work, making sure I had everything I needed for
31:15
Speaker 2: the day to be on my own. And I've just
31:20
Speaker 2: had to deal with it since, still in pain, just
31:26
Speaker 2: waiting for my surgery. And then I thought it was tomorrow. Nope,
31:32
Speaker 2: we're having an appointment and then we're going to book
31:34
Speaker 2: it probably through the the end of this year or
31:38
Speaker 2: beginning of next year. So I've just got to suck
31:41
Speaker 2: it up until then. Unfortunately, I feel like Hushpron's disease
31:47
Speaker 2: is so overlooked and because it's so rare, people aren't
31:52
Speaker 2: educated on it enough. Like my doctors when I went
31:55
Speaker 2: in this year into adults, they were like, what on
31:58
Speaker 2: earth is hushbronster? And I was like, this is what
32:03
Speaker 2: I mean. Even medical professionals don't understand what it is
32:08
Speaker 2: because it's so rare. And the reason why I was
32:13
Speaker 2: that I wasn't diagnosed so late on was also because
32:17
Speaker 2: I am female, because Hirshbung's disease is most commonly known
32:22
Speaker 2: in males as opposed to women. So they were like,
32:26
Speaker 2: it can't be because she's a girl. But I did.
32:30
Speaker 2: I sprung through and I actually got my hushbungs from
32:36
Speaker 2: my dad because it's hereditary condition, and he also had
32:41
Speaker 2: a sphincterotomy and a pull through, but he had a
32:46
Speaker 2: costing bag for a little while, but he wasn't anywhere
32:50
Speaker 2: near as severe as my condition. But all of my
32:53
Speaker 2: doctors throughout my life have been like, I just don't
32:57
Speaker 2: understand because normally you do the pull through through and
33:01
Speaker 2: you link everything back up and it's not fixed, it's
33:05
Speaker 2: not cured, but it works a bit better, Whereas for me,
33:12
Speaker 2: it was never going to work. And They've suggested reversing
33:16
Speaker 2: my stoma and I've just gone no, because we've done
33:20
Speaker 2: the tests. We know that my body doesn't work like
33:26
Speaker 2: that and I can't pass anything by myself, so I don't.
33:31
Speaker 2: They just want to test it, and I'm like, I
33:33
Speaker 2: don't feel comfortable testing it because we know and we've
33:37
Speaker 2: done the tests that we know it won't work. So
33:41
Speaker 2: what is the point in going through all the pain
33:44
Speaker 2: and the torture of having it reversed and having to
33:48
Speaker 2: go through everything and doing the washouts manually every day
33:52
Speaker 2: and everything.
33:53
Speaker 1: For no results.
33:56
Speaker 2: So I put my foot down and I was like,
33:58
Speaker 2: I am keeping my stomach because without it, I wouldn't
34:04
Speaker 2: be able to do the daily things that I do.
34:07
Speaker 2: I mean, it's been a blessing. When I was twelve,
34:13
Speaker 2: all the way until I was sixteen, because I had
34:16
Speaker 2: my stoma, I played rugby and I was captain of
34:21
Speaker 2: my rugby team. As well. I took them to County
34:25
Speaker 2: and we played all through outdoorset and Wiltshire. But if
34:30
Speaker 2: I hadn't had my STOMABAG, I wouldn't have been able
34:33
Speaker 2: to have done that, because I had had years of
34:36
Speaker 2: my childhood ripped away, where I was sat on the
34:40
Speaker 2: couch watching countless amount of times finding Nemo, to the
34:45
Speaker 2: point where my mum had to hide the DVD from
34:50
Speaker 2: me because she was so sick of watching it. And
34:53
Speaker 2: I couldn't do normal kid activities. I couldn't go out
34:57
Speaker 2: to play or go and ride my bike. I was
35:01
Speaker 2: just stuck inside. And I was like, what is the
35:04
Speaker 2: point in doing that again as an adult when I
35:09
Speaker 2: don't have the caring support of like my mum with
35:13
Speaker 2: me every day. Because I'm proud of what I've been
35:18
Speaker 2: able to do, because I'm nineteen and I live with
35:21
Speaker 2: my partner in our own flat and We've got three cats.
35:25
Speaker 2: I'm a crazy cat lady. But if I didn't have
35:29
Speaker 2: my stoma, I would still have to live with my
35:32
Speaker 2: mum for that support. And I just don't want to
35:38
Speaker 2: have the privileges of my own privacy and my own
35:42
Speaker 2: life stripped away from me just because the doctors want
35:47
Speaker 2: to see if my hirshbrungs has gotten better and if
35:51
Speaker 2: everything will finally work, because that's not how it works unfortunately.
35:57
Speaker 1: So yeah, wow, that's a heck of a story, that
36:03
Speaker 1: really is. It's interesting, you say, though, when everybody has
36:07
Speaker 1: a different hairs sprung story. And obviously I've heard, you know,
36:10
Speaker 1: a lot over the last couple of years, nothing like that,
36:14
Speaker 1: but obviously a lot in the last couple of years.
36:17
Speaker 1: But everybody is different, you know. There are some that
36:20
Speaker 1: have said, oh, I'm not sure if I want to
36:22
Speaker 1: come on the podcast because I kind of had my
36:23
Speaker 1: pull through whatever it is X amount of months or
36:28
Speaker 1: weeks or whatever, and now I'm all right, I haven't
36:30
Speaker 1: had the operations since. And then you've got the other
36:33
Speaker 1: end of the spectrum where you've got you know, tons
36:37
Speaker 1: of operations and various other things and procedures and this
36:41
Speaker 1: and that, and it is so vast in terms of
36:46
Speaker 1: its one end to the other. There's a couple of things.
36:51
Speaker 1: There's quite a few things said on there. That two
36:54
Speaker 1: things that really brought me back to my childhood. Mather column, Pickolaxe.
37:02
Speaker 1: I've not heard those for about twenty five years.
37:06
Speaker 2: That's my childhood.
37:08
Speaker 1: It's so odd hearing those again, because I as soon
37:11
Speaker 1: as I couldn't have told you what medication I had,
37:13
Speaker 1: but as soon as you said it, I thought, yeah,
37:16
Speaker 1: I remember that. I remember that exactly. But yeah, I
37:20
Speaker 1: mean with especially with the diversion collides to the first
37:26
Speaker 1: about in twenty twenty, sounds absolutely horrific, And I'm so
37:31
Speaker 1: glad that you know, everything kind of I don' want
37:35
Speaker 1: to say worked out, but you know what I mean,
37:37
Speaker 1: sort of, you know, but with twenty twenty being the
37:43
Speaker 1: year it was, and COVID as well, I guess that
37:46
Speaker 1: made it doubly triply more difficult.
37:51
Speaker 2: Yeah, because this was right at the very end. It
37:55
Speaker 2: was I think, uh, five days after my sixteenth birth No,
38:05
Speaker 2: not sixteenth, five days after my fifteenth birthday, so this
38:11
Speaker 2: was this was the nineteenth of December. Wait yeah, no, okay, no,
38:20
Speaker 2: it's six days after my birthday. Sorry, nineteenth December twenty twenty,
38:26
Speaker 2: and after the hellish year of not being able to
38:29
Speaker 2: go to school or anything. And twenty twenty was rough anyway,
38:33
Speaker 2: because my mum was a primary worker because she was
38:38
Speaker 2: a school teacher, so she had to go in to
38:41
Speaker 2: work to teach online. But also the kids who were
38:47
Speaker 2: kids of nurses or police officers or firefighters or other teachers.
38:52
Speaker 2: She had to go in and be with them. And
38:55
Speaker 2: because of that, I was on my own for most
38:57
Speaker 2: of twenty twenty. To no fault to her, she had
39:01
Speaker 2: to do her thing during COVID, and I'm extremely proud
39:04
Speaker 2: of her for it, But yeah, I was alone for
39:08
Speaker 2: most of twenty twenty. And then that happened, and it
39:12
Speaker 2: was just a whirlwind and I because of everything that
39:17
Speaker 2: was going on and my health as well, because you're
39:21
Speaker 2: in that awkward tween stage where you're fifteen and you're like, oh,
39:25
Speaker 2: why does my body not look the same as everyone else's.
39:27
Speaker 2: I've got stone a bag, but I want to be
39:29
Speaker 2: able to wear I don't know, low rise jeans or whatever.
39:32
Speaker 2: And it's those first world problems. You think of all
39:37
Speaker 2: the things you've been.
39:38
Speaker 1: Through and that's the biggest issue at that point.
39:43
Speaker 2: All of that combined and then what happened at the
39:46
Speaker 2: very end, I went through a serious case of depression,
39:52
Speaker 2: which was eventually after twenty twenty till last year, which
40:01
Speaker 2: was monitored every month that keep a little diary of
40:04
Speaker 2: my mood. Finally got my bipolar diagnosis as well, which
40:10
Speaker 2: was specifically triggered from COVID and what happened with my
40:16
Speaker 2: trauma in twenty twenty. And I also from my trauma
40:22
Speaker 2: developed turettes, so I don't really have verbal ones. I
40:26
Speaker 2: might make an ooh sound, but other than that, it's
40:30
Speaker 2: neck twitches. But it was all bought on from twenty
40:35
Speaker 2: twenty and everything that happened.
40:38
Speaker 1: Yeah, but that's not surprising in the slightest, you know.
40:43
Speaker 1: And again I just said, with varying degrees of hirsch Bronx,
40:50
Speaker 1: there's such a scale and it's the everything else that
40:56
Speaker 1: goes with it as well, isn't it. And PTSD, I
40:59
Speaker 1: know it's a very overused phrase, but it's something that
41:04
Speaker 1: really really exists, you know, especially with everything that you've
41:07
Speaker 1: been through, and it's it's not it's not a surprise
41:13
Speaker 1: in the slightest that that's happened.
41:16
Speaker 2: No, my PTSD was even though I'd done the e
41:21
Speaker 2: M d R, it went on for years. I've only
41:24
Speaker 2: really I haven't gotten over it, of course, but it's
41:29
Speaker 2: it's still it's still there, but it's not as severe
41:32
Speaker 2: as what it was. Since that night, I can't sleep
41:39
Speaker 2: in the dark. I have to have a light on
41:41
Speaker 2: because I'm in fear that if I wake up in
41:43
Speaker 2: the middle of the night and I pulled back the
41:44
Speaker 2: bed sheets, so I'm going to be covered in blood again.
41:48
Speaker 2: So I still have to which is so embarrassing as
41:51
Speaker 2: an adult now, but at the same time, for my
41:54
Speaker 2: own peace of mind, I have to do that because otherwise,
41:59
Speaker 2: if I wake up the night, I will have a
42:00
Speaker 2: full blown panic attack and for ages. I couldn't sleep
42:05
Speaker 2: without someone in my room, so whether that was my
42:09
Speaker 2: mum or when it got to like a year down
42:12
Speaker 2: the line, my mum couldn't stay in my room for years.
42:16
Speaker 2: So I ended up bringing my pets into my room
42:19
Speaker 2: so that no one was there, but I didn't feel alone,
42:24
Speaker 2: so I had my little guinea pigs running around on
42:26
Speaker 2: the floor during the night. Now, thankfully I've got my
42:31
Speaker 2: partner and I've got my cats, but and that makes
42:34
Speaker 2: me feel so much more secure. But it really did
42:39
Speaker 2: bring out the worst in everything. PTSD is so overused
42:45
Speaker 2: by people who haven't had trauma, just using it as
42:50
Speaker 2: a funny term, when in reality, it's so serious and
42:53
Speaker 2: it's so overlooked and people don't understand the extremities of it,
43:00
Speaker 2: and the effects. So that's another reason why I wanted
43:04
Speaker 2: to bring it up, because I don't think that I'm
43:07
Speaker 2: the only person with Herschwrong's disease. That's how a traumatic
43:10
Speaker 2: event happen, and it's it's not okay that it happened,
43:16
Speaker 2: but it's okay not to feel okay about it. And
43:20
Speaker 2: trauma from health conditions is very likely and very normal
43:27
Speaker 2: to happen, unfortunately, But it's being able to recognize that
43:33
Speaker 2: and support yourself with it, which is yeah, yeah.
43:39
Speaker 1: Yeah, no, you're absolutely right. And I think there's on
43:42
Speaker 1: that subject as well. I think there's a lot of
43:44
Speaker 1: people who have maybe been through not the same as you,
43:47
Speaker 1: or not quite to that extent, but have certainly been
43:50
Speaker 1: through because surgery is traumatic, you know, and we, as
43:54
Speaker 1: Hirshbrong's people, go through a fair bit, but you may
43:58
Speaker 1: not necessarily realize that you've been through it. I think
44:02
Speaker 1: that's one of the big things as well.
44:04
Speaker 2: I've not only got trauma from obviously what happened in
44:08
Speaker 2: twenty twenty, but I've got a lot of trauma to
44:11
Speaker 2: do with hospitals and surgeries because of everything that I
44:15
Speaker 2: went through as a child being pinned to the beds
44:18
Speaker 2: to do irrigation or being forced to take my meds
44:24
Speaker 2: where someone would hold my head and make me swallow
44:26
Speaker 2: it and stuff like that. But the surgeries as well.
44:31
Speaker 2: In my nineteen years almost twenty years of living, I
44:35
Speaker 2: have had twenty four surgeries in my lifetime. And the
44:41
Speaker 2: sad thing is is that that's not even abnormal for
44:44
Speaker 2: people with hirshbuns or stoma bags. Maybe not to the
44:48
Speaker 2: extremity of that many times, but every person with hirshbuns
44:52
Speaker 2: has at least had a few, and it just you
44:58
Speaker 2: don't understand how traumatic it can be to go through
45:02
Speaker 2: a surgery multiple times. And I think the worst part
45:08
Speaker 2: is is that in my head, the way that I
45:11
Speaker 2: think of it is is that I've gone through all
45:14
Speaker 2: of this and yet there is at the end of
45:18
Speaker 2: the day, there is no cure for Hushbrung's disease. It's
45:22
Speaker 2: just preventing things from happening, or working with what you've
45:29
Speaker 2: already got. There is no end of the cycle. And
45:34
Speaker 2: I find it so disappointing that small or less known
45:43
Speaker 2: conditions don't get as much recognition for cures or preventatives
45:50
Speaker 2: as bigger things do. I know that Hushbungs is a
45:55
Speaker 2: small minority of the world of population, but if aft
46:00
Speaker 2: a lot people.
46:01
Speaker 1: Still absolutely, it's not as small as we think. I
46:05
Speaker 1: don't think it's not as small as we think. But
46:08
Speaker 1: thank you so much for coming on. This has been
46:11
Speaker 1: such an eye opener to chat to you. And just
46:15
Speaker 1: very quickly before we wrap up, future wise for you
46:20
Speaker 1: future plans. What are you sort of hoping for the future.
46:26
Speaker 2: I'm not too sure. I just want to live my
46:29
Speaker 2: life as normally as I can. I'm going to keep
46:32
Speaker 2: my stoma bag with me. I always joke that my
46:36
Speaker 2: partner is going to have to change it when I'm
46:37
Speaker 2: like seventy because it's not going anywhere because it changed
46:41
Speaker 2: my life. But other than that, I'm just going to
46:45
Speaker 2: live my life like a normal person with a normal job,
46:49
Speaker 2: normal friends, and the only thing that's different about me
46:52
Speaker 2: is that I have a stoma bag and I have
46:54
Speaker 2: to have a surgery every two years. Other than that,
46:57
Speaker 2: I am still a person.
47:00
Speaker 1: Fantastic great way to wait. Well, thank you so so
47:03
Speaker 1: much for coming on. And I don't know, guys without saying,
47:06
Speaker 1: but will anyway that I wish you all the very
47:09
Speaker 1: very best for the future.
47:11
Speaker 2: Thank you very much.
47:16
Speaker 1: Thank you for listening and being part of this growing community.
47:19
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
47:22
Speaker 1: leave a review, and share it with someone who might
47:25
Speaker 1: need it. You can connect with us on social media
47:28
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
47:33
Speaker 1: See you next week.