Latest / Tom's Hirschsprung's Podcast / Episode 142 - With Rachel Peichl McGee

Transcript

Episode 142 - With Rachel Peichl McGee · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirschsprungs podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirschsprungs disease. Whether you
• 0:09
  Speaker 1: live with it, care for someone who has it, or
• 0:12
  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 142 of Tom's
• 0:50
  Speaker 1: Hairsprings podcast. I'm delighted this evening to be joined by Rachel. Rachel,
• 0:55
  Speaker 1: welcome to the podcast.
• 0:56
  Speaker 2: Thank you so much.
• 0:58
  Speaker 1: Thank you so much for coming on. Um, Now, you
• 1:02
  Speaker 1: have Hirschsprungs, and we are going to chat through your story,
• 1:08
  Speaker 1: which I'm fascinated to know about. But over to you.
• 1:12
  Speaker 1: Start from wherever you would like.
• 1:15
  Speaker 3: Okay.
• 1:16
  Speaker 2: Well, I am 55 years old, living in America. And
• 1:23
  Speaker 2: from what obviously my parents have told me, I was
• 1:27
  Speaker 2: six months old. when they finally figured out what was
• 1:31
  Speaker 2: wrong with me, I had kept losing weight. We live
• 1:36
  Speaker 2: in a small town in Wisconsin. And a doctor here
• 1:39
  Speaker 2: where we live just came back from Germany on a
• 1:44
  Speaker 2: vacation and had heard about this disease called Hirschsprung's. And
• 1:52
  Speaker 2: he said, your daughter has every symptom. And I suggest
• 1:57
  Speaker 2: you get her down to University Hospital in Madison and
• 2:02
  Speaker 2: see if there's anything they can do because there was
• 2:04
  Speaker 2: nothing they could do here in our small town. So
• 2:09
  Speaker 2: my parents were very young. They would have been 19
• 2:13
  Speaker 2: and 22 at that time. And they went down, took
• 2:17
  Speaker 2: me down to Madison. And yep, that's what they figured
• 2:22
  Speaker 2: I had. And after long talks with the doctors, nothing
• 2:27
  Speaker 2: was ever, no surgeries were ever done like that here
• 2:30
  Speaker 2: in Wisconsin. So besides having to do what here was
• 2:35
  Speaker 2: an experimental surgery and also a baby being put under
• 2:40
  Speaker 2: anesthetic for that length of time, they had to have
• 2:46
  Speaker 2: very long talks with my parents. And my parents still
• 2:49
  Speaker 2: tear up and it makes me tear up because I
• 2:52
  Speaker 2: just feel for them as such young parents. And the
• 2:57
  Speaker 2: chance of me first surviving and then the chances of
• 3:03
  Speaker 2: me being mentally challenged from that long of anesthetic. But
• 3:09
  Speaker 2: it was the only chance I had. So, of course,
• 3:12
  Speaker 2: they did it. So that was I was born in July.
• 3:17
  Speaker 2: They did the surgery in December, obviously spent my first
• 3:20
  Speaker 2: Christmas in the hospital in Madison. And to give you
• 3:24
  Speaker 2: a geographic that it's about, at that time, the way
• 3:27
  Speaker 2: the roads were, was probably two and a half, well, three,
• 3:32
  Speaker 2: over three hours away from where my parents lived. And
• 3:35
  Speaker 2: I was in pediatric ICU for over three months with
• 3:40
  Speaker 2: my own nurse 24-7. And they actually encouraged my parents
• 3:44
  Speaker 2: not to come very often. infection reasons. They couldn't really,
• 3:49
  Speaker 2: it's not like it was now, you know, where you
• 3:51
  Speaker 2: can touch your baby through the, you know, through the
• 3:55
  Speaker 2: incubator or whatever they do. It was so different. And
• 4:00
  Speaker 2: they did the, I had 18 and a half inches
• 4:04
  Speaker 2: removed and did the pull through. I was blessed that
• 4:10
  Speaker 2: my sphincter muscles worked so they didn't have to do
• 4:13
  Speaker 2: the colostomy. but they left like a stoma there for
• 4:17
  Speaker 2: quite some time and just kept working those muscles, I guess.
• 4:23
  Speaker 2: And then my mom couldn't remember. I talked to her
• 4:26
  Speaker 2: today trying to refresh timeline, obviously, a long time ago.
• 4:31
  Speaker 2: But then they did a couple other surgeries in there
• 4:35
  Speaker 2: to close everything up and keep it working. And eventually
• 4:42
  Speaker 2: were able to bring me home and I've had intestinal
• 4:45
  Speaker 2: issues my entire life. I'm on the opposite spectrum from
• 4:48
  Speaker 2: what I've seen on following a lot of pages and
• 4:51
  Speaker 2: listening to podcasts such as yours, that it's usually constipation
• 4:59
  Speaker 2: and difficult to have bowel movements. I'm way on the
• 5:02
  Speaker 2: other spectrum. I have a hard time eating and it
• 5:06
  Speaker 2: doesn't just run right through me for whatever reason. Who knows?
• 5:12
  Speaker 2: But that's, yeah, right. We don't know a whole lot
• 5:14
  Speaker 2: about why any of this happens, right? And I've had
• 5:21
  Speaker 2: several very serious surgeries since. So I don't know how
• 5:28
  Speaker 2: far you want me to go without you interjecting or
• 5:30
  Speaker 2: if you want me to just keep going.
• 5:32
  Speaker 1: No, to be honest, on these podcasts, I don't say
• 5:35
  Speaker 1: a lot. It's the easiest job in the world. I
• 5:38
  Speaker 1: just let other people talk. Brilliant. I have the easy
• 5:42
  Speaker 1: job here. But yeah, I mean, six months. I mean,
• 5:47
  Speaker 1: usually we're talking, I mean, I was three weeks and
• 5:52
  Speaker 1: that was considered late. I mean, we're talking usually like
• 5:55
  Speaker 1: 48 hours.
• 5:56
  Speaker 2: So that shows a lot about where medicine has come
• 6:00
  Speaker 2: and where it was back then. And again, I have
• 6:02
  Speaker 2: a very strong Christian faith. And my line that I
• 6:08
  Speaker 2: use all the time is God saved me for a reason.
• 6:11
  Speaker 2: And for many reasons. So I am very, very grateful
• 6:16
  Speaker 2: for every day that I have. I have never said,
• 6:20
  Speaker 2: why me? I look at it as though I'm here
• 6:24
  Speaker 2: to help others, make everyone's day better. And maybe it
• 6:31
  Speaker 2: sounds odd because I have a really, I have a
• 6:35
  Speaker 2: really hard time. I live with pain every single day
• 6:37
  Speaker 2: of my life. And the older I get, the more
• 6:40
  Speaker 2: pain it is. At 15 years old, I had really
• 6:44
  Speaker 2: bad menstrual cramps and periods. It was horrible. And at 15,
• 6:51
  Speaker 2: I was in so much pain one night, my mom
• 6:54
  Speaker 2: rushed me to the hospital. And they opened me up
• 6:59
  Speaker 2: thinking I had appendicitis. Well, first of all, apparently, they
• 7:04
  Speaker 2: couldn't find my appendix. So they called University Hospital in Madison.
• 7:09
  Speaker 2: My mom and dad kept telling them, I know that
• 7:12
  Speaker 2: they have her appendix. They told them that in Madison.
• 7:15
  Speaker 2: We did not take the appendix out. Well, they called
• 7:17
  Speaker 2: University Hospital and said, did you take it out? The
• 7:21
  Speaker 2: parents are saying no. And they're like, no, we left
• 7:24
  Speaker 2: it in. So I called my parents in the hospital
• 7:27
  Speaker 2: room and said, no worries. We're still looking as I'm
• 7:30
  Speaker 2: open on the operating table. And they ended up finding it.
• 7:38
  Speaker 2: I'm such a mess in there from the pull through,
• 7:39
  Speaker 2: I guess, and all the adhesions that it was adhered
• 7:43
  Speaker 2: to my right ovary. And when they removed it, I
• 7:47
  Speaker 2: had an infected cyst that by this point had burst
• 7:52
  Speaker 2: and I was full of infection. So they removed the appendix,
• 7:58
  Speaker 2: even though it was healthy at that point, they did
• 8:00
  Speaker 2: remove it. And I was in the hospital for a
• 8:03
  Speaker 2: couple of weeks pumping out all the infection and which
• 8:06
  Speaker 2: all of that just made more adhesions and another huge
• 8:10
  Speaker 2: scar and recovery. And it was at that point, when
• 8:17
  Speaker 2: my mom took me to the hospital that night, all
• 8:19
  Speaker 2: I kept doing was praying to God, please let me
• 8:21
  Speaker 2: still be able to have children. I didn't know what
• 8:22
  Speaker 2: was wrong with me, but it was my feeling. And
• 8:27
  Speaker 2: that was when I found out I'd never have children.
• 8:30
  Speaker 2: That from the pull through, everything was so shifted in there.
• 8:34
  Speaker 2: There was just no way that I would be able
• 8:38
  Speaker 2: to have children. That was the most devastating part of
• 8:42
  Speaker 2: my life. That was, and that was all because of
• 8:46
  Speaker 2: the Hirschsprungs. And that's probably, that still makes me cry
• 8:50
  Speaker 2: to this day. And I, that's the thing I pray
• 8:55
  Speaker 2: that they can figure out a.
• 8:59
  Speaker 3: Way that other Hirschsprungs babies don't have to have that
• 9:03
  Speaker 3: that somehow the pull through is safer especially for females
• 9:09
  Speaker 3: to not have to go through that we go through.
• 9:12
  Speaker 2: Enough than to have when to have that.
• 9:16
  Speaker 1: Definitely I think I guess another way potentially of looking
• 9:22
  Speaker 1: at that is because of sort of the pioneering surgery
• 9:28
  Speaker 1: that you went through which was most definitely pioneering surgery That,
• 9:35
  Speaker 1: in turn, has sort of advanced medical science in a
• 9:41
  Speaker 1: way where... I mean, I have spoken to plenty of
• 9:48
  Speaker 1: females who have Hirschsprungs who do have children, and I
• 9:51
  Speaker 1: guess because of people like yourself who were able to
• 9:55
  Speaker 1: have the surgery, you have helped them very much so,
• 9:59
  Speaker 1: I believe.
• 10:00
  Speaker 2: And that is a bright spot that does help. That
• 10:06
  Speaker 2: I'm glad that at least something good came out of that. So...
• 10:12
  Speaker 2: That was when I was 15. When I was 30,
• 10:13
  Speaker 2: I finally convinced the doctors to give me a complete
• 10:16
  Speaker 2: hysterectomy because I was still in so much pain every
• 10:19
  Speaker 2: time I had my period and ovulating everything. I'm like,
• 10:23
  Speaker 2: why do I? Let's just take it all out. I mean,
• 10:26
  Speaker 2: I have enough pain anyways. I get the whole hormones
• 10:29
  Speaker 2: and it helps, you know, blah, blah, blah, blah, blah.
• 10:32
  Speaker 2: Don't care.
• 10:33
  Speaker 1: Take it out.
• 10:35
  Speaker 2: Just get it out. We got enough issues. And the
• 10:39
  Speaker 2: fallopian tubes were getting cut off by all the adhesions.
• 10:41
  Speaker 2: I mean, I was having cut off bowels from all
• 10:46
  Speaker 2: the adhesions. Let's just get some of it out. So
• 10:49
  Speaker 2: when I was 30, they finally did. And then I
• 10:53
  Speaker 2: was still just having the same pain. Nobody would listen
• 10:56
  Speaker 2: to me. That's the hardest part probably about Hirschsprungs. I mean,
• 11:01
  Speaker 2: they all think you're crazy. That you really don't have
• 11:04
  Speaker 2: that pain. You're just a chronic complainer. You know, you
• 11:11
  Speaker 2: just want to shake them, right? I'm sure there's people
• 11:13
  Speaker 2: that are listening to this right now saying, yeah. Well,
• 11:16
  Speaker 2: guess what? It was five years later. I went in
• 11:21
  Speaker 2: with massive pain. They opened me up five days later.
• 11:25
  Speaker 2: I was in the hospital for five days. They didn't
• 11:27
  Speaker 2: know what was wrong with me, but they found a mass.
• 11:30
  Speaker 2: Guess what? They left half of my right ovary behind.
• 11:35
  Speaker 2: And their excuse was because I have all these adhesions.
• 11:39
  Speaker 2: from all these surgeries and Hirschsprungs, that they couldn't see it.
• 11:46
  Speaker 2: So in their mind, it went back to the Hirschsprungs,
• 11:49
  Speaker 2: even though they didn't want to listen to me. So
• 11:53
  Speaker 2: here we are, another huge surgery, another huge scar. All
• 11:57
  Speaker 2: the nerves cut through, all the muscles.
• 12:02
  Speaker 1: It's just... Yeah, I mean, I think you're absolutely right.
• 12:06
  Speaker 1: The amount of people I've spoken to, both on here
• 12:09
  Speaker 1: and sort of away from this as well, who just say,
• 12:15
  Speaker 1: you know, whether it's they have Hirschsprungs themselves or whether
• 12:21
  Speaker 1: they're parents of a child that has Hirschsprungs, and they're
• 12:24
  Speaker 1: not listened to, and they do have to fight. It
• 12:30
  Speaker 1: is a fight, and they really have to advocate. and
• 12:34
  Speaker 1: say you know listen to me i've seen this before
• 12:40
  Speaker 1: you know but but then unfortunately and and it's not
• 12:44
  Speaker 1: to take away from doctors nurses because there are some
• 12:47
  Speaker 1: fantastic doctors and aces and and who do some some
• 12:50
  Speaker 1: wonderful things but there is also the other side where
• 12:56
  Speaker 1: you do almost have that that arrogance in kind of
• 13:01
  Speaker 1: where the docs and nurses will say, you know, what
• 13:04
  Speaker 1: do you know? You know, you're not trained in this,
• 13:08
  Speaker 1: you know, but as a person with Hirschsprungs or mother
• 13:11
  Speaker 1: or father of a child with Hirschsprungs, you know that
• 13:16
  Speaker 1: this is happening. And you keep telling, you keep telling,
• 13:22
  Speaker 1: you keep telling, and you don't really want to be
• 13:25
  Speaker 1: proven right because that would mean that you're in pain
• 13:28
  Speaker 1: and something's wrong. But on the other hand, you do
• 13:31
  Speaker 1: want to be right because you're right.
• 13:34
  Speaker 2: Yep. That validation is anytime I do, I have a
• 13:39
  Speaker 2: pain doctor now that I've found in the last couple
• 13:42
  Speaker 2: of years. And he's actually my parents' pain doctor for
• 13:45
  Speaker 2: their back. Grew up on a farm. They're both very
• 13:51
  Speaker 2: hard workers. And one time when I was there with them,
• 13:54
  Speaker 2: I told him about my history. And I said, by chance,
• 13:58
  Speaker 2: is there anything you can do for me? Because I
• 13:59
  Speaker 2: can't find a doctor to help me. He said, you
• 14:02
  Speaker 2: know what? Make an appointment. I think I can. And
• 14:05
  Speaker 2: the first time he sat with me, he immediately validated everything.
• 14:09
  Speaker 2: I started crying because someone was finally listening. And he
• 14:14
  Speaker 2: said he took one look at my stomach visually and
• 14:19
  Speaker 2: he said all those scars were the scar tissue alone,
• 14:22
  Speaker 2: but then all that nerve damage, none of that repairs
• 14:26
  Speaker 2: after all the years you've had. I mean, he just
• 14:29
  Speaker 2: started talking. I just sat there looking at him going,
• 14:32
  Speaker 2: you're like an angel sent to me. And he has
• 14:35
  Speaker 2: all these ideas and what we do to try to
• 14:37
  Speaker 2: give me at least some relief that I'm not missing
• 14:40
  Speaker 2: out on so many events in life. And I can
• 14:44
  Speaker 2: play with my grandchildren. I have stepchildren and now stepgrandchildren.
• 14:49
  Speaker 2: Another blessing I thank God for. And I can do
• 14:53
  Speaker 2: things with them without having to miss out. So at
• 14:57
  Speaker 2: least I have some relief and I finally have somebody
• 15:01
  Speaker 2: listening to me, at least on that side of it.
• 15:03
  Speaker 1: Yeah, that's got to be so incredibly helpful.
• 15:09
  Speaker 2: It is. I get injections into my abdomen now, just
• 15:13
  Speaker 2: like people do in their joints, the same kind of thing.
• 15:17
  Speaker 2: I do have pain pills I can take. I am
• 15:19
  Speaker 2: on every day like a nerve painkiller, not an opioid,
• 15:24
  Speaker 2: but it helps. My brain doesn't feel the pain. And
• 15:29
  Speaker 2: we're looking at another procedure doing a, putting a device
• 15:35
  Speaker 2: inside that hits the nerves again so my brain doesn't
• 15:39
  Speaker 2: feel it. It's like they do that for back pain
• 15:43
  Speaker 2: as well. And he said we can do that for
• 15:46
  Speaker 2: your abdomen pain too. Again, not a lot of people
• 15:52
  Speaker 2: will have this, but you know what? I came into
• 15:55
  Speaker 2: this world doing experimental crazy things, but I might as
• 16:00
  Speaker 2: well just keep it up.
• 16:03
  Speaker 1: Absolutely. Absolutely. But to think, you know, if your parents
• 16:08
  Speaker 1: had been told this 55 years ago, that there'd be
• 16:12
  Speaker 1: devices that you'd use to send signals to the brain,
• 16:15
  Speaker 1: it would just, Right?
• 16:19
  Speaker 2: Gosh, you'd never imagine. Never imagine it.
• 16:22
  Speaker 1: No.
• 16:23
  Speaker 2: No.
• 16:24
  Speaker 1: I mean, it's really, really good that science has come
• 16:30
  Speaker 1: a long way. There's still, I think, a long way
• 16:33
  Speaker 1: to go. It's an awful long way to go. And
• 16:36
  Speaker 1: I know we were talking a little bit off air
• 16:37
  Speaker 1: just about scars as well and about how they've changed
• 16:43
  Speaker 1: over the years. probably have the same sort of size scar,
• 16:50
  Speaker 1: because there's a chunk that goes right across the stomach
• 16:53
  Speaker 1: from one hip to the other.
• 16:56
  Speaker 2: Mine goes vertical.
• 16:58
  Speaker 1: Ah, right, okay.
• 16:59
  Speaker 2: Again, that changed from 55 years to 34 years ago.
• 17:05
  Speaker 2: That changed too.
• 17:06
  Speaker 1: So it's the same size, it just goes a little
• 17:09
  Speaker 1: bit in a different direction. But you're out, I mean... Yeah,
• 17:16
  Speaker 1: I don't know why it's gone in a different direction.
• 17:18
  Speaker 1: It doesn't look any different. It's still the same size.
• 17:22
  Speaker 1: It's still there. But it's now kind of moved on
• 17:27
  Speaker 1: to the point where pull-throughs, in some cases, are done
• 17:30
  Speaker 1: through keyhole, which is, again, amazing.
• 17:34
  Speaker 2: It is. It is, and thank goodness for that because
• 17:37
  Speaker 2: the amount of adhesions that you and I have in
• 17:42
  Speaker 2: our abdomens for every... surgery you have, that's interfering with
• 17:47
  Speaker 2: the rest of our organs. So, you know, these are
• 17:51
  Speaker 2: all things that medicine, medical doctors have learned now. So
• 17:59
  Speaker 2: thank goodness it's come that far, giving more hope to
• 18:03
  Speaker 2: parents and kids that are dealing with it right now,
• 18:09
  Speaker 2: that there's even more hope that it'll get better. as
• 18:15
  Speaker 2: they get older.
• 18:17
  Speaker 1: I hope so.
• 18:18
  Speaker 2: That Earth's journey will hopefully be better than ours. Yeah.
• 18:23
  Speaker 1: I mean, at least it's heading in the right direction.
• 18:26
  Speaker 2: Right.
• 18:27
  Speaker 1: Is where it's going. And now from what I've seen
• 18:30
  Speaker 1: and people I speak to, there seems to be more
• 18:32
  Speaker 1: research going on now more than ever. So hopefully that
• 18:37
  Speaker 1: will accelerate and we can not, you know, possibly um
• 18:46
  Speaker 1: it will still because it's it's genetic it's not you
• 18:49
  Speaker 1: know um you'll never eradicate it fully but at least
• 18:54
  Speaker 1: if we can make people's lives more comfortable exactly that
• 18:58
  Speaker 1: would really help well.
• 19:00
  Speaker 2: And catch it so much earlier like we were talking
• 19:02
  Speaker 2: about you know sometimes within 48 hours versus six months
• 19:07
  Speaker 2: for me you know i that that it's an it's
• 19:13
  Speaker 2: a miracle that I lived that six months and they
• 19:18
  Speaker 2: were able to even do it, you know, and as
• 19:20
  Speaker 2: weak as I probably was. I mean, I forget my
• 19:23
  Speaker 2: mom how much I only weighed at that point because
• 19:26
  Speaker 2: obviously I couldn't keep things in. So, yeah, you look
• 19:32
  Speaker 2: back on things and people didn't want to talk about
• 19:36
  Speaker 2: a lot of things back then either. Like when I
• 19:40
  Speaker 2: was a kid, I didn't talk about the fact that
• 19:42
  Speaker 2: I had or that I didn't feel well. Like the
• 19:46
  Speaker 2: school nurse, they'd think you just wanted to get out
• 19:48
  Speaker 2: of class. You know, they didn't know what Hirschsprungs was,
• 19:53
  Speaker 2: so they don't believe you. I had to go, because
• 19:58
  Speaker 2: I was under all that anesthetic, I had to go
• 20:00
  Speaker 2: through testing all the time. A lot of it was
• 20:03
  Speaker 2: because then they could use that information at University Hospital. Like,
• 20:09
  Speaker 2: numbers and colors and if I was mentally challenged. And
• 20:15
  Speaker 2: as a kid for a while, I didn't understand why
• 20:18
  Speaker 2: I was having all this. I was annoyed by it.
• 20:20
  Speaker 2: I remember that being a kid and being annoyed because like, hello,
• 20:24
  Speaker 2: I know all this. What am I doing? But it
• 20:28
  Speaker 2: was difficult being a kid with bowel issues. I mean,
• 20:33
  Speaker 2: nobody talks about that. Everyone, you don't make that a normalcy.
• 20:39
  Speaker 2: And I wish that for kids especially that are dealing
• 20:43
  Speaker 2: with it, that if somehow we can make other kids
• 20:49
  Speaker 2: not make fun of it, make it okay, make it
• 20:51
  Speaker 2: okay that they can just leave the classroom to go
• 20:54
  Speaker 2: to the bathroom when they have to. And all the
• 20:57
  Speaker 2: things we don't think about until you're in our shoes
• 21:01
  Speaker 2: or someone with Crohn's or IBS, which is all very
• 21:05
  Speaker 2: similar to what we deal with. I don't know. nobody
• 21:09
  Speaker 2: thinks of that until you're like in our our situations.
• 21:13
  Speaker 1: No no definitely not i mean but thankfully again there
• 21:18
  Speaker 1: are sort of movements towards that i mean that there's
• 21:23
  Speaker 1: some some really good charities over here like guts uk
• 21:27
  Speaker 1: i mean they do a lot of um promotional material
• 21:30
  Speaker 1: around that around trying to get people to talk about
• 21:34
  Speaker 1: bowels more um and try and make it sort of
• 21:37
  Speaker 1: more You know, not everyday conversation, but at least make
• 21:42
  Speaker 1: it a little bit more normal, I guess.
• 21:46
  Speaker 2: Not a stigma to it. Yeah.
• 21:48
  Speaker 1: Yeah, definitely.
• 21:49
  Speaker 2: Like back in the 80s for me, I mean, obviously
• 21:52
  Speaker 2: I'm aging myself, but when I came back to school
• 21:56
  Speaker 2: finally after having the infected cyst, the school wouldn't allow
• 22:00
  Speaker 2: us to say why I was out of school that long.
• 22:04
  Speaker 2: I had appendicitis with complications. Yeah. Talk about, and I've
• 22:11
  Speaker 2: recently thought about this, how no wonder I felt like
• 22:16
  Speaker 2: there was something wrong with me. And remember, then I
• 22:18
  Speaker 2: was told at that time I couldn't have kids. Well,
• 22:21
  Speaker 2: they didn't want that out in the school because they
• 22:23
  Speaker 2: thought it wouldn't be good if the boys in school
• 22:26
  Speaker 2: knew that. I was 15. Well, leave that up to me.
• 22:31
  Speaker 2: But I'm glad that society has at least come that far.
• 22:39
  Speaker 2: That we're not hiding things like that anymore.
• 22:44
  Speaker 1: Yeah. That's amazing. They didn't want to use the word Hirschsprung.
• 22:50
  Speaker 1: They wanted to use appendicitis with complications.
• 22:54
  Speaker 2: Yeah. Yeah.
• 22:55
  Speaker 3: Wow.
• 22:56
  Speaker 2: Yeah.
• 22:56
  Speaker 1: I mean, I just, again, do you imagine all the
• 23:00
  Speaker 1: rules they'd be breaking nowadays? Right.
• 23:03
  Speaker 2: It's crazy.
• 23:04
  Speaker 1: It's crazy. Yeah, you'd have lawsuits left, right and center,
• 23:09
  Speaker 1: I would imagine. But that is, yeah, that's, wow, that's,
• 23:15
  Speaker 1: that's incredible.
• 23:17
  Speaker 2: I never talked about anything. And now I finally am
• 23:20
  Speaker 2: just in the last few years, honestly, I've been more
• 23:23
  Speaker 2: open about my health than ever before.
• 23:28
  Speaker 1: Yeah, but that's really good. That's really good. I mean,
• 23:32
  Speaker 1: And it's, again, like we said, good that it's moving
• 23:34
  Speaker 1: more in that direction. Because, again, I sort of go
• 23:38
  Speaker 1: back to my childhood. It's not something I talked about either.
• 23:43
  Speaker 1: You know, it's not something, well, I didn't share my
• 23:47
  Speaker 1: story until I was 31, 32, something like that. So
• 23:50
  Speaker 1: it's only talking a few years ago. Because, and again,
• 23:55
  Speaker 1: it's not just having a condition that has a stigma
• 24:00
  Speaker 1: attached to it. but it's also having a condition that
• 24:03
  Speaker 1: nobody's heard of. Not really. I mean, okay, we meet,
• 24:07
  Speaker 1: I meet loads of people online that, um, have the condition,
• 24:12
  Speaker 1: but everyday people that I talk to, they wouldn't have
• 24:16
  Speaker 1: a clue what Hirschsprung's is. Right. So it's, I guess it's,
• 24:19
  Speaker 1: it's that as well of then having to sort of,
• 24:22
  Speaker 1: if you have a condition, then having to sort of
• 24:24
  Speaker 1: re-explain it and that just, yeah. And then it's just
• 24:28
  Speaker 1: takes time at all sorts. So it's, Yeah, I guess
• 24:31
  Speaker 1: that can be a tricky one as well.
• 24:33
  Speaker 2: Yep. So it is, it's important. That's something that I
• 24:37
  Speaker 2: also want parents to know now and younger people who
• 24:43
  Speaker 2: have it, share your story. Don't, don't be ashamed. Don't
• 24:48
  Speaker 2: shy away from it. It's important that people understand what
• 24:52
  Speaker 2: you're going through. It's, you're, you're very strong for being
• 24:58
  Speaker 2: able to get through. Hirschsprungs and living with it. It's
• 25:01
  Speaker 2: not something to shy away from or be ashamed of.
• 25:06
  Speaker 2: We were all given this journey for a reason and
• 25:10
  Speaker 2: it's made us all stronger. So share away and help
• 25:14
  Speaker 2: the ones coming after us.
• 25:17
  Speaker 1: Absolutely. Absolutely. And I take it in terms of when
• 25:21
  Speaker 1: you said sort of given the condition, there's no sort
• 25:24
  Speaker 1: of family history or anything with Hirschsprungs. You're just, I
• 25:27
  Speaker 1: take it like me, the one in 5,000.
• 25:29
  Speaker 2: Yep. Yep. That's it.
• 25:32
  Speaker 1: That's it. And there is no rhyme or reason. Yeah,
• 25:36
  Speaker 1: lucky us. There is, yeah, there's no rhyme or reason
• 25:40
  Speaker 1: really to it either. I mean, it just seems to be, again,
• 25:45
  Speaker 1: there's some people I talk to who have it running
• 25:47
  Speaker 1: through families, but there's many others that I talk to
• 25:52
  Speaker 1: like us who are the one in 5,000 and we just,
• 25:56
  Speaker 1: there's no rhyme or reason. And I guess that, That's
• 25:59
  Speaker 1: a tricky one as well, just to sort of deal
• 26:02
  Speaker 1: with mentally that, you know, like you said a while ago,
• 26:07
  Speaker 1: you said sort of, you never thought, why me? Which
• 26:11
  Speaker 1: I think a lot of people do. A lot of
• 26:13
  Speaker 1: people really think that sort of like.
• 26:15
  Speaker 2: I'm sure they do. Which is okay that they do.
• 26:17
  Speaker 2: I don't want anyone to think I'm looking down on that.
• 26:22
  Speaker 2: That's the mindset I've had to have to be able
• 26:26
  Speaker 2: to get through everything. Yeah.
• 26:28
  Speaker 3: Yeah.
• 26:29
  Speaker 1: Because again, indeed, and I totally get that because if
• 26:33
  Speaker 1: we do think, why me, as I have done previously,
• 26:37
  Speaker 1: it doesn't do you any good because you never come
• 26:39
  Speaker 1: up with an answer. You'll never get there.
• 26:42
  Speaker 2: Just going in that circle. I was previously married. I'm
• 26:49
  Speaker 2: with my husband now for 20 years, but I was
• 26:51
  Speaker 2: previously married and he did not understand me being sick
• 26:55
  Speaker 2: all the time at all. And it was a big.
• 27:00
  Speaker 2: A big sore spot in our marriage. There were a
• 27:02
  Speaker 2: lot of issues, but this was a big one. And
• 27:06
  Speaker 2: remember one day it was the turning point. I was
• 27:09
  Speaker 2: sitting on our front porch with my dog and I
• 27:13
  Speaker 2: sat there and I'm like, God didn't save me to
• 27:16
  Speaker 2: be living like this.
• 27:18
  Speaker 1: He didn't.
• 27:20
  Speaker 2: There's more to it than this. And that was the
• 27:24
  Speaker 2: day I decided that I had to do something to
• 27:26
  Speaker 2: change my life. And it all came back to, again,
• 27:31
  Speaker 2: being a Hirschsprungs kid, adult. Hirschsprungs is your life. It's
• 27:38
  Speaker 2: there forever. And it's just how you choose to live
• 27:46
  Speaker 2: with it and what you make of it. Yeah. And I,
• 27:52
  Speaker 2: for one, I mean, I've had so many surgeries since
• 27:55
  Speaker 2: I left him. Side note, he came to visit me
• 27:59
  Speaker 2: more after we were divorced in the hospital than while
• 28:02
  Speaker 2: we were married. Just a little funny side note.
• 28:09
  Speaker 1: Okay. Interesting.
• 28:16
  Speaker 2: Kind of silly, but you did. But now, you know,
• 28:22
  Speaker 2: it just... Again, we were given this journey for a reason.
• 28:28
  Speaker 1: Why?
• 28:28
  Speaker 2: We'll never know. But it is part of our life
• 28:33
  Speaker 2: and we're never going to shake it. So we might
• 28:35
  Speaker 2: as well make it what it is.
• 28:38
  Speaker 1: We'll try and make the best of it as we can. Absolutely.
• 28:42
  Speaker 1: I mean, you talked about surgeries there. And am I
• 28:45
  Speaker 1: right in saying it's 10 surgeries?
• 28:48
  Speaker 2: Mm-hmm.
• 28:49
  Speaker 1: All told.
• 28:50
  Speaker 2: Yeah, and I've also had an acute attack of pancreatitis.
• 28:58
  Speaker 2: And they believe it was from a med I was on.
• 29:03
  Speaker 2: They don't know, or it could be tied to the Hirschsprungs.
• 29:08
  Speaker 2: They never found out why. I mean, I like having
• 29:12
  Speaker 2: a glass of wine, that kind of thing, but I'm
• 29:15
  Speaker 2: not a heavy drinker. And there were no, all the
• 29:18
  Speaker 2: tests that they did proved that. So I was in
• 29:23
  Speaker 2: the hospital a week for that. My gallbladder, which was
• 29:27
  Speaker 2: also in kind of the wrong spot, by the way. Surprise! Amazing.
• 29:37
  Speaker 2: So they opened me wide up for that one, too.
• 29:40
  Speaker 2: because they did one laparoscopy on me one time and
• 29:46
  Speaker 2: they said never again because there's so many adhesions that
• 29:50
  Speaker 2: they couldn't see, they couldn't navigate in there well enough.
• 29:55
  Speaker 2: So all the surgeries are wide open so that they
• 29:58
  Speaker 2: could get around in there So, yes. Amazing.
• 30:03
  Speaker 1: That's just, and it is, it's, yeah. I mean, that's
• 30:09
  Speaker 1: a tough one as well, especially with adhesions as well.
• 30:12
  Speaker 2: Yeah.
• 30:12
  Speaker 1: They are, you know, something that a lot of people,
• 30:15
  Speaker 1: including myself, have struggled with and needed operations for and
• 30:20
  Speaker 1: all sorts.
• 30:21
  Speaker 2: I mean, they just wrap themselves around wherever they want. Yeah.
• 30:24
  Speaker 2: I mean, it's, and there's nothing you're going to do
• 30:27
  Speaker 2: about it, right? No. No.
• 30:29
  Speaker 1: Nothing you can really do apart from then going back
• 30:31
  Speaker 1: in there and cutting through them all. Right.
• 30:34
  Speaker 2: Which they have, when they've been in there for something else,
• 30:37
  Speaker 2: they've let them down. I think that's what they call it.
• 30:40
  Speaker 2: Let them down so that, you know, try to help
• 30:44
  Speaker 2: for a time. But then you just get more back. There,
• 30:51
  Speaker 2: you got it. Yeah. Yeah. but it is, it is
• 30:56
  Speaker 2: what it is, I guess.
• 30:57
  Speaker 1: It is, it is. But, and I guess, um, another
• 31:02
  Speaker 1: point to make in terms of, you know, like you said, with,
• 31:05
  Speaker 1: with your story and helping people, um, you, you have
• 31:10
  Speaker 1: had some, some quite interesting sort of jobs as well. Um, so,
• 31:14
  Speaker 1: I mean, one of the things, I guess, with a
• 31:17
  Speaker 1: lot of parents I talk to, they want to know,
• 31:19
  Speaker 1: you know, can my child Go to school. Can they work?
• 31:23
  Speaker 1: Can they do this? Can they do that? And you
• 31:27
  Speaker 1: most certainly have and still do.
• 31:29
  Speaker 2: Yeah. Yeah. I was a court reporter for almost 25 years,
• 31:36
  Speaker 2: which I look at that now. How did I do
• 31:41
  Speaker 2: that without being able to just get up and go
• 31:44
  Speaker 2: to the ladies room when I needed to? I didn't
• 31:46
  Speaker 2: eat a lot at work. Because I never know when
• 31:50
  Speaker 2: I'd have to go to the ladies room. But then
• 31:55
  Speaker 2: I started a multi-level marketing business while I was still
• 32:05
  Speaker 2: court reporting. And I became very successful. So I, within
• 32:10
  Speaker 2: three years of that, I matched my salary. So I
• 32:14
  Speaker 2: left court reporting to run that. And I started my
• 32:18
  Speaker 2: social media marketing business and ran that. Sold my multi-level
• 32:24
  Speaker 2: marketing business because I was in the top 5% so
• 32:27
  Speaker 2: I could actually sell it. So I sold that. And
• 32:30
  Speaker 2: now I'm running my social media marketing business. And it's
• 32:39
  Speaker 2: great because since I left court reporting, I work from
• 32:43
  Speaker 2: home or wherever I am. If I don't feel well,
• 32:50
  Speaker 2: the graphics look the same, but I'm laying in bed working.
• 32:55
  Speaker 1: No one knows.
• 32:56
  Speaker 2: Nobody knows. They don't know I'm now fixed up and
• 33:00
  Speaker 2: looking good. And if it's a good day, I go
• 33:03
  Speaker 2: to my clients and take photos and do the things
• 33:06
  Speaker 2: that I do. So I've got all my material to
• 33:08
  Speaker 2: work with. And if it's not a good day, well,
• 33:11
  Speaker 2: then we just work from home. That's fantastic.
• 33:16
  Speaker 1: I mean, you know, when we just spent the last
• 33:20
  Speaker 1: sort of half hour talking about a lot of the
• 33:23
  Speaker 1: terrible stuff you've been through and made and removing certain
• 33:28
  Speaker 1: parts and not being able to find certain parts.
• 33:33
  Speaker 2: It sounds like a clue, but it's so.
• 33:35
  Speaker 1: Yeah. And a lot of things that realistically no person...
• 33:43
  Speaker 1: you know, should ever have to go through or, you know,
• 33:46
  Speaker 1: will ever know, you know, a hundredth of what you've
• 33:49
  Speaker 1: been through, but yet you've still made a huge success
• 33:54
  Speaker 1: out of it, which I think, I mean, kudos to you.
• 33:56
  Speaker 1: That's brilliant. I mean, but it just, and I guess
• 34:01
  Speaker 1: within having a lot of surgeries and pain and et cetera,
• 34:04
  Speaker 1: you've had to find, well, a lot of inner strength,
• 34:08
  Speaker 1: I guess.
• 34:09
  Speaker 2: Yeah, a lot of it. You know, I attribute part
• 34:12
  Speaker 2: of it to I grew up on a farm. I'm
• 34:14
  Speaker 2: an only child. My parents and I are very close.
• 34:19
  Speaker 2: They're very hard workers. Again, strong faith. And you just
• 34:24
  Speaker 2: kind of kept going one day at a time. And
• 34:30
  Speaker 2: they never made me feel like I was different or
• 34:34
  Speaker 2: that I was weak. But yet they understood that I
• 34:38
  Speaker 2: didn't feel good. So it was a good combination. And
• 34:46
  Speaker 2: my husband now, he completely understands. So I can talk
• 34:52
  Speaker 2: about how I'm feeling or what's going on. So I
• 34:56
  Speaker 2: have a good support system. And that has helped a lot.
• 35:01
  Speaker 2: My dad's line to me always, every time I'm in
• 35:03
  Speaker 2: the hospital, is, honey, there are brighter days ahead. We'll
• 35:07
  Speaker 2: just get through this. I always have that in my head.
• 35:12
  Speaker 1: I think that's a brilliant saying. I really do. I
• 35:17
  Speaker 1: think what you just said there is a wonderful balance
• 35:20
  Speaker 1: as well because yes, we go through pain but we
• 35:25
  Speaker 1: don't always want sympathy all the time or treated like,
• 35:31
  Speaker 1: oh well, they go through pain so maybe they can't
• 35:34
  Speaker 1: do that or maybe they shouldn't do this. But also
• 35:38
  Speaker 1: we want The understanding. It's a really tricky balance.
• 35:43
  Speaker 2: It is, right?
• 35:44
  Speaker 1: But if you can find someone who knows that balance,
• 35:49
  Speaker 1: I mean, that's a godsend.
• 35:52
  Speaker 2: Like I've always told my friends, I have a small
• 35:56
  Speaker 2: core group, and I always tell them, just let me
• 35:59
  Speaker 2: make the decision. Invite me, ask me, and understand that
• 36:04
  Speaker 2: if it's last minute that I cancel, they understand. We
• 36:08
  Speaker 2: always call it a bad tummy day. Yeah. It is
• 36:13
  Speaker 2: what it is, you know, because we all know that.
• 36:16
  Speaker 2: That happens.
• 36:17
  Speaker 1: Yeah.
• 36:19
  Speaker 2: It can happen at the drop of a hat that
• 36:21
  Speaker 2: all of a sudden, out of the blue, I'm either
• 36:23
  Speaker 2: stuck in the bathroom or I have so much pain.
• 36:27
  Speaker 2: And for me, if I have a day where my
• 36:32
  Speaker 2: bowels really act up and I've been in the bathroom
• 36:34
  Speaker 2: five to ten times in a row, then... Within an hour,
• 36:38
  Speaker 2: the pain gets extremely bad because all those nerves have
• 36:43
  Speaker 2: been just flare up on those muscles. And I don't,
• 36:50
  Speaker 2: I'm just done. I am under my heating pad, pain pill,
• 36:54
  Speaker 2: and just let me be in the fetal position and
• 36:58
  Speaker 2: leave me alone. I'm not leaving the house because I just,
• 37:02
  Speaker 2: I just can't. I might work because I'm right here.
• 37:07
  Speaker 2: But I'm not going out in public. I need a
• 37:10
  Speaker 2: day of rest. And unfortunately, you know, there's always people
• 37:14
  Speaker 2: who don't understand that. But for the most part, if
• 37:17
  Speaker 2: they're close enough to you, they know and they understand.
• 37:20
  Speaker 1: Yeah, absolutely. And it's not the treating differently because we
• 37:29
  Speaker 1: have a certain condition, but it's that empathy and that understanding,
• 37:34
  Speaker 1: which is, Which is so important. And that kind of goes,
• 37:37
  Speaker 1: I guess, for every chronic illness. You know, a lot
• 37:39
  Speaker 1: of people talking as well. It's having people who understand.
• 37:44
  Speaker 1: And unfortunately, not everybody has that skill to understand because
• 37:50
  Speaker 1: either they've never been through it or never seen anyone
• 37:52
  Speaker 1: go through it or just sort of think, well, everyone
• 37:55
  Speaker 1: should just get on with life. But it doesn't quite
• 37:58
  Speaker 1: work like that.
• 37:59
  Speaker 2: Exactly.
• 37:59
  Speaker 3: Exactly.
• 38:01
  Speaker 1: It's a good balance. Yeah, absolutely.
• 38:05
  Speaker 2: And you're lucky when you get that.
• 38:08
  Speaker 1: For sure. For sure. But it's, again, brilliant to see
• 38:12
  Speaker 1: that you've, you know, obviously doing so well at the
• 38:14
  Speaker 1: moment and have done so well, I mean, in the past,
• 38:17
  Speaker 1: you know, despite going through all manner of surgeries and
• 38:25
  Speaker 1: procedures and all sorts, which is fantastic. And I think
• 38:30
  Speaker 1: what this will do is... just like we were saying
• 38:34
  Speaker 1: before a little bit off air about for me trying
• 38:37
  Speaker 1: to get more adults with Hirschsprungs to come on the
• 38:40
  Speaker 1: podcast which is quite rare to find first I've got
• 38:45
  Speaker 1: to find people with Hirschsprungs then yes and then people
• 38:50
  Speaker 1: who actually want to talk about it as well which
• 38:53
  Speaker 1: is also tough but no I'm so glad that you
• 38:58
  Speaker 1: have come on and chatted about this because I think
• 39:03
  Speaker 1: it is going to give you know really good hope
• 39:07
  Speaker 1: to those because there will be people listening to this
• 39:10
  Speaker 1: always are people listening to this who are going through
• 39:14
  Speaker 1: challenging Hirschsprung's related moments and to know that obviously you've
• 39:21
  Speaker 1: been through quite.
• 39:23
  Speaker 2: A few of them yes more than I could ever
• 39:26
  Speaker 2: count yes.
• 39:28
  Speaker 1: But have very clearly sort of come out the other side. Yes,
• 39:33
  Speaker 1: you said you have good days, bad days, all of
• 39:36
  Speaker 1: that stuff. But to know that you're doing so well
• 39:40
  Speaker 1: is really, really good to see.
• 39:42
  Speaker 2: Yeah, yeah, I really am. I am grateful for every day,
• 39:49
  Speaker 2: every day. It's a blessing. Absolutely.
• 39:53
  Speaker 1: Absolutely. And I guess if there are people listening to
• 39:58
  Speaker 1: this now know everybody's situation is different. What sort of
• 40:04
  Speaker 1: gets you through the bad days at the moment?
• 40:10
  Speaker 2: Giving myself grace. Let myself feel bad. Don't push myself.
• 40:15
  Speaker 2: Let your body rest. Don't push it. Because then it'll
• 40:21
  Speaker 2: only get worse. So give yourself a little grace. Even
• 40:25
  Speaker 2: if I do need to work, I know I'm blessed
• 40:28
  Speaker 2: now that I can work from home. But still take
• 40:32
  Speaker 2: the time to rest if you're exhausted, sleep. I mean,
• 40:36
  Speaker 2: our bodies can only do so much. I am careful.
• 40:39
  Speaker 2: My immune system is really crummy from, you know, first
• 40:43
  Speaker 2: from the Hirschbrungs and then from being sick so many times, right?
• 40:46
  Speaker 2: We all have that issue. So I'm very careful in
• 40:49
  Speaker 2: that regard, you know, flu season and all that. But
• 40:54
  Speaker 2: just give yourself grace. Let yourself rest. If you need
• 40:59
  Speaker 2: to just have a little pity party for a day,
• 41:01
  Speaker 2: let yourself do it. And then brighter days are ahead
• 41:05
  Speaker 2: and the next day is a new day. Brilliant.
• 41:08
  Speaker 1: No, I think that's a fantastic sentiment to finish on.
• 41:11
  Speaker 1: And thank you so, so much for coming on.
• 41:14
  Speaker 2: Thank you for asking me. I really, I was very
• 41:17
  Speaker 2: excited that you asked me because I actually have been
• 41:20
  Speaker 2: thinking about sharing my story more and for chronic illness,
• 41:24
  Speaker 2: people giving them hope in general. So your timing was
• 41:28
  Speaker 2: spot on.
• 41:30
  Speaker 1: Oh, well, a lucky guess. I thought, lucky guess is
• 41:33
  Speaker 1: a good timing.
• 41:36
  Speaker 2: Wonderful.
• 41:37
  Speaker 1: Thank you so, so much for coming on and sharing
• 41:40
  Speaker 1: your story because it's been fascinating to chat to you.
• 41:44
  Speaker 1: And I wish you all the very, very best for
• 41:47
  Speaker 1: the future.
• 41:48
  Speaker 2: Thank you so much. Thank you. And I wish the
• 41:50
  Speaker 2: same for you.
• 41:52
  Speaker 1: Thank you.
• 41:53
  Speaker 2: Okay.
• 41:56
  Speaker 1: Thank you for listening and being part of this growing community.
• 42:00
  Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
• 42:02
  Speaker 1: leave a review, and share it with someone who might
• 42:05
  Speaker 1: need it. You can connect with us on social media.
• 42:08
  Speaker 1: via Instagram, Facebook, and TikTok, under the name Tom's First
• 42:12
  Speaker 1: Sprungs Podcast. See you next week.