Latest / Tom's Hirschsprung's Podcast / Episode 27 - With Nicky Kilpatrick @nickykilpatrickcoach

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Episode 27 - With Nicky Kilpatrick @nickykilpatrickcoach · Tom's Hirschsprung's Podcast

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You are listening to Tom's Hirshprung's Podcast, where I provide a look into the
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remarkable experiences of the most inspiring people around Hirshprung's disease and sports. Hello and
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welcome to episode twenty seven of Tom's Hirshprung's podcast. With me today is the
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host of The Bow Chronicles podcast, Nikki Kilpatrick. Welcome, Niki, thanks
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tound likes for having me here. Well, thank thank you for having me
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as well. Because my pod, my show on your podcast, will come
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out before this, so we are recording slightly in sync, so I'll be
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appearing on Nicki's podcast, The Bow Chronicles before you hear Nicki's episode on my
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podcast. So thank you very much for joining me now here. You're here
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to talk about your story and that you've shared quite a lot on TikTok you
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shared on Instagram, And I'd like to start, if I may, with
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sort of around twenty to fifteen, when you're diagnosed with an extra large bowl,
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so something that I hadn't heard of, and I know we were talking
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offline before and you know another person who has who has this, It's something
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I hadn't heard of before. How did that kind of come about okay,
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So I had a diagnosis of a megacorn. My kind of overall problem with
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my bile is low colon TRANSLT, which then has ended up in a stonema
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surgery back and twenty fifteen, I was going about my everyday business. I
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was actually preparing for a girly holiday and had been trying on some clothes in
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the bedroom. Felt really good about myself because I'm always into fitness, had
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been working hard for this holiday and thought, flit me, I lived good
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today. And less than twenty four hours later I was in hospital. My
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abdomen had swollen away out like a football, basically had swallowed the football.
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And I had been out for a mail that evening and unbeknown to me,
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I had picked up some type of bacteria infection from the bid premises and it
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put me in hospital for two weeks. But it flagged up that nothing could
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push through my boil. There was a build up in my boil. There
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was an obstruction in my boil, and they could see that on the actual
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and scans that I basically they called my husband out and said you need to
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come and see this, and I thought at that stage they're going to come
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back and tell me I've got a cancerous mass or a timmer. You know
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in there there's something going on that's not good. And when he came back
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in, he basically put his hand to his throat and his hand to his
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below his belly button and said, you're backed up from here to here.
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And I said what, and he said, yes, you are completely full
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of still a waste. And they admitted me to hospital at that point to
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administer enemas and various other ball preparations. And when I drank those boil preps
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and had those elements, absolutely nothing happened. And they were kind of wanting
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to flash me out to get me in for colin moscoby to see if there
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was anything else going in there because I was so heavily impacted. So I
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was in hospital for two weeks and then they sent me home. I went
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home for a few days, the pain continued. I was readmitted back to
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hospital again to manage the pain, and then they still couldn't do the colonoscaby,
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so they brought me back a few weeks later after being on constant boil
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prep every single day to be able to do this colonoscoby. Three weeks later
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they brought me in had the colonosca by drank all the boil prep the night
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before, and I can remember them sanding me on the day, oh,
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my goodness, that boil prep. The resigue is still in your boil,
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you know, like we don't really see this. But they managed to do
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the colonoscaby. It was grand. And the next thing, I was going
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to the pain Cliic to have a lighter kin infusion because they a mighted pay
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and I might add them so much. So I went in and I was
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kind of hooked up for the r to have this infusion in to kind of
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manage the pain. And when they were trying to gauge the level of lado
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kin in relation to my weight and things, they consultants started to look at
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my notes and his reaction to me was, oh, you're the girl with
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the mega coolon. And I just said, I beg your bardon what And
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he said you're the girl with the mega coolon And I said what do you
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mean and he said, oh, you're colonoscoby. You not heard the results
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And I said no, I don't know the outcome and he said, oh,
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well, basically instead of you having a round forfeit of large intestine.
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You've got a return fate. You have an awful lot, and that is
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why you're obstructed basically from your throat to your one. That's because you can
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hold a lot in there. And I kind of started to do the maths
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because I wouldn't generally swell out or have a large stomach. I could eat
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food and I could go for a very long time before I would swell out,
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and that was because of the length of the large boil. And they
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kind of jibbing, ascending cool on transverse colon and descending cool on were instead
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of going up three sets three sides, you know, up the right hand
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side, across the top, and down the left hand side, they were
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all living on top of each other, and that was why the still couldn't
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pass through. So that's kind of where things really started kicking off in twenty
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fifteen, although after that my vile movements went back to being every two to
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three weeks, which for me was normal. We know that that technically isn't
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normal, and your balling every day or every other day at least, but
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that was my standard normal. And previous to that, I'd had a couple
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of times in my lifetime where I had maybe been constituted for a while,
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but a simple accidive would rectify it. The only other time before that that
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it was so bad was when I was twenty one. A ball stop functioning
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after I had the birth of my first child, and it didn't function for
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ten weeks. And at that stage they had told me that my large boil
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and small boil hadn't came back dying after the pregnancy to kind of be together.
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But that's why it was taken forever. That was actually not the reason.
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It was because they had a mega coolon and they just didn't know.
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Yeah, no, I sort of, yeah, I thought when you when
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you said that they hadn't come back together, would have probably been because of
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the large colon and the fact that it was just taken. Was it just
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taking time to come back together or was it just not not coming back together
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at all? I think it was it probably had been stretched out to you
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know, a certain degree. I couldn't, you know, here I had,
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I had this ten week old baby, and I couldn't sell her on
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my opdomen, you know, and credle her because the pain was so severe.
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But you know, when I when I look back on it and see,
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Okay, mega cool, and you've got so much. You know,
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if you think of someone with a really small frame, and you know,
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if I was to stand side by side with my husband now, who's quite
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a large man and broad, I effectively have more boile inside of me than
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what he does. And it just doesn't it doesn't appear right, It doesn't
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equate to me or why would I have so much more, you know,
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than he does. So it takes a lot longer for everything to kind of
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go through through the bonnet. And now that's the time gone on, it's
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just gotten a lot worse. Yeah, So was this obviously something you were
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born with? Was it so it was picked up around twenty did you say?
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Twenty one? People take probably slightly lighter than that. So there was
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nothing sort of childhood and teens or anything that was sort of pointed to having
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an extra large colon. Only in the last kind of seven years I've had
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access to my medical moves to have a luxury and I could see that.
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Whenever I was fifteen or sixteen, I'd gone to the doctor and they had
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said at that stage, oh, some constipation, and I was prescribed the
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likes of laxio or movicle, which is a stage of powder bom into water
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to drink or just take standard lactolosispoonful of that and I would have been okay.
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So just that maybe I was fifteen or sixteen at the time, and
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then twenty one when I had my first, first baby, and then it
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was grand you know, and like I said, it became it became normal
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for me. Did you know, did maybe go to the toilet every couple
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of weeks? It just it was standard. It was what I was used
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to. And there was no one at that stage in my family who had,
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you know, a boil condition as such. My mum does have a
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torturous boil but again that's only came delight in the last couple of years and
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since that, my youngest daughter also has a very long torture as boile.
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So we do think, yes, it's been hereditary. And also then IBD
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runs in my family, which with Kim, the light of my nan ended
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up with a stoma bag and things, so there is bile issues in our
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family. But again that's all been in a lot of years. Wow,
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that's interesting, very very interesting that it through your diagnosis that then you're able
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to see whether it's hereditary and what other people have and things like that,
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because it's similar sort of thing with hirshbrungs. I know you discussed yesterday on
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the parents having certain chromosomes and if they had those certain chromosomes, it then
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ends up a one in four chance that your child could end up with with
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hirshprung. So it's very interesting to know that there are other bow conditions that
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are equally as as hereditary. And sorry on my notes, my so,
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my gram has IBS diagnosed IBS. My mom was diagnosed with IBS, and
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my first diagnosis was IBS was IBS C, which was IBS with constipation slightly
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more severe. But I always knew there was something more going on, like
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this isn't IBS, it is more Yeah, wow, that's that is That's
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that's very very interesting to know. And then if I may, I'd like
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to move on to sort of twenty twenty ish. So when your your bow
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stopped just all together? Was that was that just a sort of sudden thing
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that happened or had that been sort of building for a number of sort of
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months and years. No life was going, life was going kind of grand,
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everything was okay. My bil movements were standard, usually every two weeks.
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October twenty twenty was the last time ever that my bile has functioned itself.
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I was out for a walk at that point. We were just going
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through lockdown, and I had been walking thirteen kilometers. I know it's a
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weird number, but it's just the route that I took every day. I
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was thirteen kilometers with my dog, and like I said, I was feeling
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healthy, and at that stage, my boil was working every day. I
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came back from my walk and my boil worked, and I thought, this
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is great. And then the middle of October, I had been out for
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a walk. I was actually preparing to do a charity walk in the morning
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mountains, and I took a massive pain in my lower left side, just
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aboot my hip bone, and I thought, oh, this doesn't feel right.
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It was really really short pain. And I actually had had kidney stones
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two years before this, where I had some stints inserted to have the kidney
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stones removed. And the pain was the only thing I could liken it too,
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and absolutely horrendous pain. I wouldn't wish it on anyone. I thought,
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right, this has to be a kidney stone, and I kind of
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let it go. But over the next kind of couple of weeks it got
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so bad. I couldn't sleep. I was in insomniac. I was in
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that's sitting on my sofa all night long. I couldn't be in the bed.
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I was keeping my husband awake, I was crying. I was an
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excruciating pain. Eventually took myself to the hospital and they'd done some seed the
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scans to relite kidney stones, because you get red flagged if you already are
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someone who suffered previous kidney stones that got lodged and thinking, and they said
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to me, no, there's no there's no stones that are lodged anywhere.
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It all looks good. There has to be this is horrendous, this is
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okay, And I knew it kind of wasn't anything from a female ganiny point
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of view, because I'd had a subtotal hysterectomy years ago, so it's not
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that it has to be kidney stones, and I hadn't because my boils were
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moving like normally every two weeks. I hadn't realized at that exact point that
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my boils had stopped functioning. So this period of time kind of went on.
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We got to kind of November. The pain was exactly the same.
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I was sleeping every night on the sofa. I couldn't take heavy pain pain
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meds like coating and things, because I would never have had coding because it
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constipu so those are things that I would stay away from. So I took
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myself again back to the hospital and what they did was they put me on
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a boulder all suppository that goes into the back passage to kind of lessen the
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pain in that area. So it's a bit more effective. And it was
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the same medication that put me on for kidney stones. I took the edge
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of it slightly. It was supposed to last for twelve hours, and then
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I was screaming, and this kind of went on. We got as far
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as Christmas, and I can remember on Christmas Day twenty twenty sitting at the
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table and I actually had to dish up myself a child's portion of Christmas dinner
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and I couldn't eat it because anything that I put into my body I felt
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completely fill I just was like, I'm going to be sick. I feel
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like I'm going to warm up. And then from Christmas Day in the New
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Year's. Going into New Year's I realized I needed to take some form of
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black sliver bild prep that was stronger. Because I had been drinking fourteen sachets
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of black sido and a jug at this stage made up in two liters of
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water. It wasn't penetrating anything. Nothing could get away, and so I
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moved on to a more harsh type of boild prep at that point, and
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again nothing happened between then and the start of February, when I took myself
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to see a private consultant because i'd again again been to ane department. They
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had sent me home two more times and my husband was just losing the wilder
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live. I said, there's something wrong with you. And actually what was
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happening was I was getting out of bed in the morning and I could feel
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my body disappearing. I just every morning I got up, I was like,
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I've lost more weight, and family members were sending me there's something not
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right. But there's something not right, and the way it was just dropping
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off me. So in the space of six weeks, three stone just dropped.
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And I then book this private appointment to say a consultant at Gastro wondrologist
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and I want to see him. That appointment didn't even last five minutes,
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and he said, you need a sea te scan and I said, I've
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had of seat teeth scanned on that it's off my kidneys, and the kidneys
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kind of said no, you need a sea tea scanned on on your boil.
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I can't you know chat or diagnosed or doing anything until you've had this
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seaties can So he said, look, we'll talk after you've had that CT
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scan, and so I left his room. I went and made the appointment,
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which was not for another two weeks, and he said, look,
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if the pae in increases in this time before I see you again, take
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yourself back to the hospital because this pain needs mind. I've seen him on
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the Thursday, and by the Tuesday I was admitted to hospital because again the
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pain was so intense, and they were actually going to send me home that
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evening with more PM medication only I said to them, are you not even
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going to X ray me? And he said, okay, I'll act ray.
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And I had actually rang my husband to say, can you drive back
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down. We live less than five minutes away from the hospital. Can you
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come back down and pick me up. I'm almost ready to go, just
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waiting home. Pain in life. And when I was being X rayed,
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I said to the radiographer. He said to me, oh, you're having
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a lot of problems on the left hand side with your boil, are you?
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And I said yes, can you see that? And he said yeah.
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And I asked him, I said, can you call up the X
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ray from last week? And you put the two X ray side by side
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on the screen, and the first xtray from the week before work my call
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on your cool on effectively looks like a length of Hoover tubing. The way
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I describe it, there were some lumps and bumps the whole way through this
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tubing. However, on the present X ray that night, you couldn't see
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any tubes of my boil. It just looked like a massive balloon inflated on
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the screen. And he looked at me and raised his Cybroys and I said,
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I've seen enough. That's okay. So I came out. And I
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was quite cocky when I seen the doctor that night, because he kept telling
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me, we don't have a surgeon free to come and speak to you.
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We don't have a surgeon free. But the moment. I walked back to
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the wedding area. There were several doctors and I could see a guy sitting
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in scrubs and it was plain that he was a surgeon. He was just
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out of theater. And I said to the doctor, I've seen the xtray
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like the actually is not good, and they said, okay, I'll take
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a look. I'll take a look. So I sat on this seat behind
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where he was stood, and I watched him walk to the surgeon tapped him
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on the shoulder and he said, can you come with me? Can you
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can you take a look at this for me? And they stood looking at
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my X rays and his words were a large bottle obstruction. She needs an
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urgent SAT with contrast no, and he lifted the phone and he dialed through
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to the CT room and said, can you unlock immediately? And he contrasts
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that up. I'm bringing this patient now myself, and he put me into
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your chair and he took me himself to have that SAT scanned on. I
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had the CT scanned on and I never seen that doctor. Afterwards, the
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surgeon came and spoke with me and said, yes, you do have a
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massive obstruction, but this is not of physical obstruction. I'm happy to tell
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you you don't have a mass, you don't have a timmer, but you
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do have some type of mechanical obstruction. And it's not a reason for me
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to admit to the hospital. The reason for me the admittud the hospital is
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demid your pain workin on. And so I had another two weeks in a
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hospital of constant bil prep, drinking it, constant enemas and suppositories. They
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would bring the commode to the side of the bed, you know, And
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in my head I was wishing I could use the commode and I would win
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balls with mood. But nothing actually happened, and so they were filling me
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up with all of this stuff for the two weeks that I was there,
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and I was getting nowhere. I was getting thinner, I was losing a
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lot of weight, but I didn't get anywhere, and they discharged me back
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into the care of the private consultant. And of course by this stage we
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were into March twenty one, which was I think the third and final lockdown,
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and it was just a nightmare that became a nightmare to get hold of
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him. I didn't see him face to face. Everything was a telephone appointment,
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and I was just kind of discharged to take all of this boil prep
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in the hope that it work, but nothing was actually happening. And so
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I had gotten to the stage where I could no longer I couldn't eat.
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I haven't been able to eat from Christmas, from having a Christmas dinner,
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and I was now on this diet of having three spoonfuls of soup in an
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evening and one cracker with butter. And then it got to the end of
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March when I got out of hospital, I couldn't have the soup, I
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couldn't have the cracker, and I was then struggling with having a wife full
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of water. Wow. Wow, that's that's an incredible story. And I
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think there's there's one point that I kind of took from that, and I
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saw it with with with somebody else actually yesterday, that you you know your
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body at the end of the day, and that yes, doctors nurses do
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fantastic work, fantastic jobs, but but at the end of the day,
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if you know something isn't right, then fight for it. And I think
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that's that's that's definitely what you did. And if if you if you you
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get a sense that actually, you know, this particular medication or this procedure
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or whatever isn't it doesn't feel good to me, you know, voice voice
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up and say, look, actually, what are the other options? Which
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is which is definitely something you did and and and definitely pay dividends in the
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end, would you say yes? I mean it was a struggle that whenever
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I was discharged that time on the hospital under the care of that consultant.
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You know, it's fair to say that consultant actually got me nowhere the one
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favor he did do because he kept saying, You're a really complex case,
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like he had no expertise of someone with a mega colon, who couldn't eat,
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who couldn't pass anything with wild prep. It just wasn't normal. And
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I was breaking my heart because here I was at home, did the way
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it disappearing off me. I couldn't I couldn't leave the house. I was
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in excruciating pain all the time, and they were trying to then give me
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like morephee and things like these are all things that that constipated and make things
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worse. They numbed the boil. They're not good for the boil. And
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to be a laxatives for any more than five days. It just isn't normal
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left alone every day in life. So at that stage, he referred me
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to Coloplast to have a boil irrigation machine, and he also referred me to
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a clinical psychologist. He didn't inform me that he was doing a ripperral and
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I kind of I'm someone who always has a positive kind of outlook on life,
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no matter how crappy the circumstances are, and I got angry whenever the
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appointment came through the door. I thought he has referred media plenty goal psychologists.
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I'm not losing the plot. I know there's something not right in my
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body. He doesn't know how to diagnose it, he doesn't know how to
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treat it. That's kind of not my issue. And instead of staying negative,
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I chose to flip it the other way and say, right, okay,
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I'm going to see what I can get out of this appointment. And
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the very first online appointment that I had with the psychiatrist, he basically had
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very little information and he said, look, tell me what's been going on
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with you, because I've just got this referral. You know you've got slow
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going on and how am I best going to help you come to terms with
24:45
your diagnosis. That's what he had and when I explained to him what had
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happened, we basically I couldn't get out of bed at night and go to
24:56
the bathroom with my collapsing on the floor. I couldn't burn down to pick
24:59
something up off the floor with like collapsing because I was so malnourished. I
25:03
didn't have the right Vinamen's minerals I can reduce all of that in my body,
25:08
and my body couldn't cope, so I would just cal over. And
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he said to me, you're malnourished. You've been neglected. You're not getting
25:18
the medical treatment you need. He's not doing his job, Like why have
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you not seen a daptician in nutritions that I don't know? So he taught
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me there and then, and he said, I'm going to teach you to
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advocate for yourself, because you know, Argia, whole life, your parents
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probably done that for you, and your husband has done you, done this
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for you. But we're at the stage where we're kind of in lockdown and
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things have changed, and you're the person that really has to speak up for
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yourself. I said, you know you're right. I would do this for
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my kids like I would fight this, and I have to fight this for
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me because this is impact and not just me, it's impact in my whole
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family. And I couldn't. I couldn't leave the house. I couldn't just
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decide to take the dog out for a walk because I was on bil preper
26:00
every day. And when wild prep did kick into a certain extent, it
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would be thirty six after thirty six hours after having the treatment, and I
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wouldn't get a sensation of you're going to pass some liquid. I got a
26:15
burning sensation in my bottom and I had to be on the toilet there and
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then. So it was coming to terms with things like, if you're going
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to be in the car, I have to sit on the toil because the
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reality is I might soil myself and I have to be okay with that if
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I want to leave the house, you know, I couldn't go out socially.
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I couldn't eat, I couldn't drink. People stopped inviting you because they
26:37
knew I couldn't eat or drink. And eventually I got the support from the
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dietitian. I was moved across to a liquid only diet, which was liquid
26:48
powder shakes two or three times a day. I struggled even with those and
26:55
just tried as best I could. That clinical psychologist also taught me a White
27:02
Patient Clowan Council in Northern Ireland, which is an outside body that all it
27:10
GPS and hospitals to make sure you're getting adequate treatment and if you're not able
27:17
to advocate for yourself, they will advocate on your behalf. And he said.
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He made me log into my laptop on the call and he said,
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I want you to get ready to draft the email. And I just said
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to him, that's not in my nature. I'm not someone who complains or
27:32
reports people. And he said, well, if you're not going to hit
27:34
sand today, I want you to ring your consultant secretary and I want you
27:41
to tell them that you're about to hit sand to see what happens. So
27:45
I came off the phone with him and it was the one and only time
27:48
that my consultant secretary hunted the phone and I just I told her, I
27:53
said, I need a second opinion. I've been advised to contact the Patient
27:56
Clan Council. I'm about to hit sound. And she said don't do it.
28:00
Don't do it. Leave this with me. I'll come back to you
28:03
today. Either way, I'll have an answer for you. And the very
28:07
next day in the post, I received a letter which was referring me to
28:12
another consultant first second opinion, and it was someone who had much more expertise
28:19
in the field, which I needed. And so that's when ties were broken
28:26
with that consultant. And the next week I went to see my consultant,
28:30
who is still my consultant to this day, is an absolutely amazing woman.
28:34
Right from the very first day, she said, I'm going to advocate for
28:37
you. We are going to get to the bottle of this. That might
28:41
take us a long time, but I am going to fight for you because
28:44
this is not quality of life. And actually what happens is if you need
28:48
surgery, we will even have that conversation with surgeons to say, I know
28:52
you don't want to do it, but this the patient's quality of life is
28:56
what overrides everything, so we have to do what is right for them.
29:00
And within two years I had my surgery. Wow, so within two years,
29:07
what what timeframe are we talking about? Now we're talking to twenty three
29:14
that be I have my surgery. Yes, so my surgery is actually five
29:19
months today. I had my surgery in the twenty six, twenty four yes,
29:23
yeah, wow wow. You know. The laid up to that was
29:32
so I've had like several MRIs in the small bile, in the large boil,
29:36
I've had things done called a proctogram, which did you go in for
29:40
E three? They insert a pieced into your rectum, which is like fake
29:45
still to see what the muscles are doing, and they could tell them that
29:51
there was no parastasis at all in my large boil, that nothing was working.
29:56
I'd also been to like the ladies on this clinic for pelvic floor to
30:02
check that all of my muscles were doing what they were. Everything from that
30:04
point of view was great, was working normal, and it was more or
30:10
less internally. And so every day kind of for the last couple of years,
30:17
I was arguing. I was using a boil irrigation, which is a
30:21
pump, a big bag that holds two liters of water. So I would
30:25
fill that with lokwarm water, placed it on the bathroom floor. It was
30:27
linked to a big catheter tube a rubber catheter on the end, and that
30:32
would be inserted into the rectum ut in the toilet. I would insert that
30:34
into the rectum, and then I would use a hand pump which would pump
30:37
the water into the boil and kind of fill it up and then effectively get
30:42
any waste to melt and come away, a bit like your home chronic irrigation
30:48
system. But with that it was unsuccessful, and right from I had started
30:56
to use that two years ago, it was evident I would it in the
31:00
bathroom for an hour and a half and I would get clear water coming back
31:03
by again. So I would pump in a leader or two lads, let
31:07
it drain away, refill the bag, pump in another two leaders, pump
31:11
it in, let it drain away. And I could do that, and
31:14
I could pump in up to twelve leaders. And actually what happened in the
31:18
end was the co directal nurse said to me, you're going to end up
31:19
perfecating your boil from low dying because nothing, nothing could get past a certain
31:26
point. And so where the pain had initially started on my left hand side,
31:30
I knew there was a point there that nothing could get past because the
31:33
block each was so great. So I was taken. I was using this
31:37
boil irrigation machine every day in life, which was taken an hour and a
31:41
half out of my daily routine. So I just scheduled it in whenever I
31:45
wanted. Sometimes I would do it in the morning. Sometimes I do it
31:48
in the evening. If I was uncomfortable during the night, I would get
31:52
up four five o'clock in the the middle of the night and just go in
31:55
and try to arrogate to try and relieve something. Because that was successful,
32:00
my gas well gasterindrologists had also put me onto several types of boild prep.
32:07
So I use clean prep and I use movie prep, which are powdered sashet
32:13
you make up in two or three liters of water before you would have a
32:16
colonoscary to make sure you're totally flashed out. And pretty much if my husband
32:22
was to drink that, within half an hour or an hour, he would
32:25
be in the bathroom with chronic diarrhea. And he would come like saying,
32:30
oh my goodness, I'm forced in a lighter. You know, I've lost
32:32
everything that goes, nothing left inside of me. That is not how it
32:37
impacted me. I never lost anything, Nothing ever flushed out of me other
32:42
than a very tiny bit of water, and so the concentration wasn't enough in
32:46
those leaders that they moved me across to a thing called so We and pick
32:51
a Soviet, which again they only usually give you a spoonful of teaspoonful of
32:55
take off book for a gpnic prescribe any more than five meals, and you're
33:01
only allowed to be on it for three days. I was drinking one hundred
33:05
and twenty meals every day to try and get somewhere, and so that was
33:08
the only thing that would help me relieve a little bit. But it would
33:14
also take me three days for it to go through my system. So my
33:17
life pretty much looked like it was scheduled. You know, if I wanted
33:22
to go to my mum's on a Thursday, I had to take my boil
33:24
prep on a Sunday, so I would be at home Sunday, Monday,
33:29
Tuesday. You know, in the Wednesday I would be clear because if I
33:31
got into the car to dry, the chances are I could pass out.
33:34
At this year and will that was just a daily thing where I would have
33:37
to bring my husband or my daughters and they'd talk to me I'm in the
33:40
car. The Paean has came on my I didn't want to pass out,
33:44
and that became an occurrence that was more, It was more and more because
33:47
my body just couldn't handle the bi prep, you know. And then I
33:52
ended up admitted the hospital last September. The pean was so bad I could
33:58
we couldn't manage it at home. And I was admitted at that stage and
34:02
my surgeon said, I want to go in and I want to look at
34:07
you laparoscopically, because if I go in and I do an iliostomy stuma surgery
34:13
right now and you waking up and you still have the same pain, you
34:17
know, what are we supposed to do? So in his head he thought,
34:22
is there a possibility that I maybe had endometriosis even though I had a
34:24
hysterectomy. He thought, has there been tissue left in there with that has
34:29
grown and that's what's causing European wrying the boil because he couldn't understand why my
34:36
boil would cause so much pain. He said, boils don't cause pain.
34:40
I said, I'm telling you, my boil is calling me pain. And
34:45
he went in labiscopically then the beginning of October and they had a look and
34:52
he said your boil looks healthy on the outside, apart from I can see
34:55
it's totally redundant. There's no muscle, it's effectively dead tissue. It's not
35:00
doing anything, and you will need a newly ostomy surgery. And so he
35:06
discharged me to see me back in three months to the end decide. That
35:10
was the end of October, but going into the start of January, I
35:17
had reported to any three times. At the start of January with the pain
35:22
again had just gotten so bad. I'd been on the phone with my consultant
35:27
and she had spoken with the surgeon and he had said that surgery was end
35:36
stage, and her opinion was, we are not end stage. I would
35:40
have taken wild prep, gotten into bed, and then felt the urge to
35:45
sit on the toilet, even though I couldn't pass anything. It was the
35:49
most comfortable place to be. And I would maybe be walking from my side
35:52
of the bed to the on suite and I would shout to my husband Alan
35:57
and say, you need to come in here because I'm going, I'm going,
36:00
I'm going to pass. I just talked to me, and I can
36:04
remember coming around and he would be holding a flannel on my forehead. I
36:07
would be propped up against the wall, soaking and sweat, and he would
36:12
just be transfalk to me to keep me alert. And then quite a few
36:17
times I ended up shining instructions at him to get the irrigation machine out,
36:22
get it together. He had never had to put the machine together, he'd
36:27
never had to use it on me before. But we were at a different
36:30
level now, or this needs done. I couldn't do it for myself.
36:34
So I was shouting instructions to assemble the machine together, and then he actually
36:39
had to insert the catheter. He had to start pumping the water into me
36:42
because I was in and out of consciousness, and not a lot of husbands
36:46
would do that for their Why do you know that's even though we're intimate,
36:52
I still felt vulnerable. I felt exposed of like my husband. Sheen had
36:55
to do this for me, And so he'd got me back into bed and
37:01
three hours would have passed where we'd been in the bathroom and trying to relieve
37:05
something, you know, And I just said to my consultant, this is
37:09
awful, like my husband, she had to do this, and she said,
37:13
you know, you're right. Her husband doesn't have to do this,
37:15
you know, a lot of men would have just rang an ambulance, since
37:19
I do you need to come and deal with this. I can do this.
37:22
And it had also gotten to the stage where I was having to use
37:28
lubricants and put on gloves and do manual evacuation myself to try and relieve some
37:31
of the pressure when my body couldn't pass still. And so then she said,
37:37
no, we need to go back to the surgeon. This surgeon needs
37:38
to do something. So the last time that I was admitted to hospital was
37:43
in and around the fourteenth of January this year, and when I was in
37:46
the hospital, I was actually having I was doing an outpatient's appointment with my
37:52
surgeon, and on that day we had a forty five minute appointment. It
38:00
was rather heeded appointment because my husband was saying, you need to do something.
38:06
This cannot go on. And the difficulty was the surgeon was to see
38:09
me as myself and my husband, and he kept saying, I wouldn't want
38:14
this for my wife. This goney impact of quality of life. You know,
38:16
it's going to change things forever. And my husband was saying, yeah,
38:20
it is going to change things forever. And she's not your wife,
38:23
she's my wife, and if you were living on a day to day basis
38:27
like this, you would want something done. And so that day he decided
38:31
that we had three options. They were to fully remove the boil, but
38:36
if he did and my pain was still there, we couldn't put the boil
38:39
back. And the other thing was to do a colostomy. And because the
38:45
issue was in my large boil, doing a colostomy for me wouldn't do anything
38:51
because the stove still can pass through the large boil, which is where the
38:52
colostomy would be formed. So the only other option then was for him to
38:58
do it a liblians to me up in the small bile where my food would
39:02
go into my stomach and then pass into the stomach in my small bottle kind
39:07
of immediately and no waste would be going through it. And if it wasn't
39:12
successful, then it could be reversed. That day that appointment was on the
39:17
twentieth of January. He told me that day he would be bringing me in
39:21
the first week in February to do the surgery. But the very next day
39:24
I had a call from the hospital asking me was I free the following Friday,
39:29
and I said yes. Got excited, thought I was going in for
39:30
my pre op assessment, but it turns out I was acclaving booked in for
39:36
my surgery, So my surgery went to head six days later. And on
39:40
the morning of surgery, I was high as a kite on morphine because of
39:44
my pain levels, and the very next day, the Saturday afterwards, I
39:49
was on an awful lot less medication after surgery because I had no pain in
39:53
my battle whatsoever. And I've not had any pain in my ball at all
39:59
since surgery. It's fantastic with the surgery itself. You said it was going
40:05
to be a lot later, and then it came a lot sooner. Was
40:08
that a better feeling? Did you have less time to get nervous or what?
40:13
Did you think? Oh, it's all come at once. I was
40:19
a little excited because it came sooner, and it worked out really well.
40:22
I mean three weeks. It still was pretty soon to have a three week
40:25
window of having it done the start of February, but because of where the
40:30
pain had gotten to, I mean, if we were to go back two
40:35
years before surgery and the surgeon had as said to me, then I'm bringing
40:38
you in next week or I'm bringing in a few weeks time, we're going
40:42
to do this surgery. I would have been probably begging then to saying no,
40:45
can we not try something else first? But because my journey had been
40:50
almost four years of agonizing pain, and I'd had everything done, and I'd
40:53
been through the motions of all the treatments, and I wasn't getting anywhere.
40:58
I was at my west end was ready for it because my quality of life
41:01
basically didn't exist. I hadn't been out for a meal in nearly four years.
41:07
I couldn't go on socialize in friends hoises because of the pain. And
41:10
I was in you know, like I said, I couldn't just randomly decided
41:15
to take the door out for a walk. I'd be on the beach.
41:17
I'll be double over and pay and screaming. I was embarrassed. I was
41:21
having to sit in a tall that, you know, go in the car
41:22
anywhere. I couldn't just nip the tesco or as did it get something,
41:25
you know, found the groceries. Those were all things that people take for
41:30
granted. I couldn't do. And so I knew that my quality of life
41:34
would be so much better. And in that six day window I had,
41:38
I had a telephone appointment with somebody from the Alostomey Association, a body you
41:44
know, asking me how I was mentally, you know, in a position
41:46
for it. They were someone who'd been through it, and it was a
41:51
really helpful chat. I also had an appointment with my stoma nurses, who
41:55
are absolutely incredible. They're a great team of ladies and they provided me with
42:01
a range of variety of stumba bags. They even give me a little fake
42:07
stomach with double sided tape to fix onto my abdomen to try, you know,
42:12
to try the bags, to sleep with the bags, and you could
42:15
put little beads inside the bag and add a little bit of water which imitated
42:21
having stool in the stoma big, you know, to try out for a
42:24
few days. It was that appointment was on the cheesy and my surgery was
42:28
on the friday. I was also in Liverpool for my daughter's graduation at UNI
42:31
on the Thursday, and it was just a busy week of going to bed
42:35
trying this new stoma bag. We not putting on a new stumba big.
42:38
But it also helped my husband and my youngest daughter who was at home where
42:43
they were saying, okay, mom, can I put this bag on for
42:45
you can I do the routine because if you're really sick afterwards, you know
42:50
we're going to have to be hands on. And they also were mentally preparing
42:53
themselves for work. So the other side of that was for the last six
42:58
months to a year, I've been tuning in and listen to podcasts every day
43:02
of people with boil conditions. I've been connecting because I share my journey on
43:07
social media, I've been connected with so many more people. And you know,
43:12
the good thing about people who do share their journeys on social media,
43:15
they're all positive. You know, they're building each other up, they're paying
43:17
it forward, and the boil community are really tight knit, close community.
43:22
They have each other's backs. They are supportive because they've gone through it themselves
43:28
and they can they fail. You, you know, you can relate to
43:32
these people. So that's kind of the head space I threw myself into.
43:37
And actually what was happening was I was mentally preparing myself for what one day
43:42
would come. In my head, I knew I would have to have surgery
43:45
at some stage. I just didn't know when, but it helped definitely prepare
43:50
me for it. So if I was to do things again, I would.
43:52
I would do it exactly the same way I know from Terbium people on
43:57
my own podcast. There are a lot of people out there that don't get
44:00
that experience. They don't get six days, notice, they don't get three
44:02
weeks notice it's an emergency. They don't know what a stoma is. You
44:07
know, I really really feel for them because for me, yeah, a
44:12
left of surgery you might say within six days, but I still had some
44:15
plan on it. I got mentally prepared for it, where the people don't.
44:20
And again that's the beauty of being able to share your journey on social
44:23
media, because those people will be tuning in, they will be watching,
44:28
they will be listening as soon as they're in a possession of having surgery,
44:31
and they need to learn and do better to learn from than somebody that's already
44:36
started their journey. So yeah, exactly, exactly, And just on your
44:39
point about your podcast as well. Obviously I appear on it, or by
44:45
the time this comes out, will have appeared on it. And fantastic podcast.
44:49
By the way, why did you decide to start to start the podcast?
44:55
So, like I said, Tom, I've been sharing my journey on
44:58
social media for for the last two two and a half years. My business
45:01
is an online wellness coach, so I mentor in fitness nutrition at Mindset,
45:07
and I have been sharing my journey publicly, turning up every day on pretty
45:13
much Facebook and Instagram. Post surgery, I mean, I've had TikTok for
45:16
I think three or four years, but I never actively used it, And
45:20
once surgery was happening, I thought, right, I'll start to share more
45:22
on TikTok. And I don't know what's happened. It's just kind of exploded,
45:25
and there's so many more people out there. I think they hide on
45:30
TikTok. They don't necessarily use their accounts, but they follow other people.
45:32
So it's a good way to have eyes on. So with sharing my kind
45:37
of online business point of view my daily life, I at first was kind
45:45
of showing up Monday to Friday, showing, you know, I was up
45:49
first thing in the morning. My daily routinements to fill my own cup,
45:51
or it still is to fill my own cup before I pour into anyone else's.
45:54
So I do a lot of volunteer work in the community and investing in
46:00
me and keeping myself in a really positive mental head space. Is important,
46:05
and for me, that is exercise at the start of my day, not
46:07
doing something that I hate, but finding programs that I love, and it
46:14
really boosts me and my days are a lot more productive where I get that
46:16
done at the story of a day. So I would turn up, I
46:19
would show that, and then I would just showcase other parts of my life
46:22
throughout the day. But at the weekends, I was disappearing, and I
46:25
was disappearing because Friday afternoon would come and I would have to do wild prep
46:30
and then I was off the grid for three days and then back on Monday
46:34
morning. Life was fine, and I began to feel like I was a
46:37
fraud. I wasn't being my real, authentic self. So I decided,
46:40
do you know what, Actually, my followers might really love to know what
46:45
is going on with me, and what if there's someone else out there who
46:49
is like me and needs help and needs to know that they're not alone.
46:52
So I started to share that and that really built my kind of following up
46:58
because of the time I think in a fifty Fords or something on each each
47:00
platform, and then people really started the tune in and follow along, and
47:06
then I just shared about going into hospital and things, and from I kind
47:12
of knew I was September October time in hospital, people really started to reach
47:17
out to me in DMS and private messages and things, and I really knew
47:23
I was impacting so many people. I then shared my my story five weeks
47:34
post surgery, I think on another podcast, the Beautiful Bad podcast ran by
47:38
him. She's a fabulously eight lean and I've been on socials together for a
47:43
couple of years now. We were kind of in similar businesses and things,
47:45
had, you know, a lot of things in common, and we've been
47:49
connecting and so it was her podcast that I was listening to every single day,
47:52
you know, I just filled myself with that. As a result of
47:55
her podcast that I connected with two other people with slow coal transit in Alaska
48:00
and Florida, and for the first time in my life, I felt like
48:04
I'm not alone. I can't find someone in Northern Ireland, but I find
48:07
someone else in the world. And I connected with those people. And then
48:14
whenever I was in hospital, I connected with another girl, Alicia, who
48:20
now runs a Northern Ireland Facebook group with me. So that was the first
48:24
thing I knew that I was impacting people, and I wanted to have something
48:29
local in Northern Ireland and I waxedpos surgery. I decided to set up I
48:35
didn't want to WhatsApp great because I think things get lost in a WhatsApp and
48:38
people can be overwhelmed with notifications of things. And the idea was to set
48:44
up a private Facebook group. So I set up austumates and I for people
48:49
living in Northern Ireland who have boil conditions, not just Stonmas, but any
48:54
boil condition. And that private Facebook group was just for those people with those
49:00
issues. It was for their loved ones or partners or carers somewhere safe that
49:07
they could ask questions. And so that group I almost hast three hundred members
49:10
in it. It's starting people just connecting there and we've had a couple of
49:15
local meetups, which is good. And I think the people of Northern Ireland
49:20
are just they like to do a community, they like to get together in
49:22
person. But I when I started to kind of publicize that, I had
49:29
so many people from around the globe because I have clients in the States and
49:32
Canada. They would contact me and say, why can't this be you know,
49:37
a global group because it's for local meet ups. In Northern Ireland.
49:42
So I also run a private Ladies Facebook group and there are some people with
49:49
s domas from the States and everything that kind of interact with each other in
49:51
that group, which is which is amazing, But that's just like a daily
49:54
building each other up, women building each other up day in day out.
49:58
But there was still the kind of lack a need for something. And because
50:04
I was connecting with so many people on socials who had gone through surgery had
50:08
amazing stories, some of them don't share their their stories on social media,
50:14
and I just thought that your story needs to be heard, like everybody has
50:19
a voice, and your story is going to impact someone. And I knew
50:24
that there was a need for a podcast. And I guess it was that
50:30
if I had to listen to the little voice in my head, I never
50:31
would have taken the step. I never would have done it. And I
50:36
was only six weeks post surgery and I found out I had an infection which
50:38
had been in my body prior to surgery, and to this day, I'm
50:43
still on antibiotics. I've got another month to do of antibiotics. It's just
50:46
it's a nasty it doesn't want to lay the body and at first, whenever
50:52
it got really bad, I was in bed a lot of the time.
50:55
But take had hit again. I'd been six weeks post surgery. I was
50:59
feeling amazing at all of sudden I got very violently sick. I was running
51:02
a fever. I couldn't get out of bed. And once we kind of
51:06
managed it and started to take the antibiotics, I then had to listen to
51:08
my body and kind of go back to day one of being in bed taking
51:13
things easy, and I just said to them, what am I going to
51:15
do? And that's when I kind of started to plan and prep and do
51:19
all of the legal side of things of a podcast and the graphics and put
51:22
everything together myself in my bed and then just decided, right, okay,
51:27
I'm going to go work and we're I want to say you're episode eleven Think
51:32
I'm Right, which is launching on Friday morning, so one podcast a week.
51:37
And Yeah, there's so many people out there that are connected with on
51:39
a day to day basis, and there's doories just need to be shared and
51:43
be heard. So no better placed to earth than on Spotify, on Apple
51:47
and YouTube. Fantastic And what an excellent plug for the podcast because My next
51:52
question was where can people find you? So that's a great segue. So
51:58
obviously the podcast, Bell Chronicles podcast on YouTube, Spotify, an Apple podcast.
52:06
Where else can people find you? People can find me on Facebook,
52:10
Instagram and TikTok under Nikki Kopatrick coach. Yeah, if you find me on
52:15
any of those platforms, there's always links in my bios which will take you
52:20
directly to the podcast and anything else that I do with all the brilliant well
52:24
for me, Thank you ever so much for joining me. Best of luck
52:28
with the podcast, the coaching and everything else. Thank you ever so much.
52:32
Dickie, thank you so much. Talk for how im here. It's
52:35
been a lastly pleasure. It's great to collab with you. So yeah,
52:38
thank you, thank you. Thank you for listening to the podcast. Find
52:46
us on Instagram, Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous episodes on
52:52
Spotify by searching Tom's Hirshbrun's podcast. Keep