Latest / Tom's Hirschsprung's Podcast / Episode 15 - With Melissa Jones (HD UK Facebook group founder)

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Episode 15 - With Melissa Jones (HD UK Facebook group founder) · 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 Tom's Hirshprung's Podcast, episode number fifteen. My guest this week is
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Melissa Jones. Melissa runs Hirshprng's Disease UK's Facebook page also has a daughter,
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Mia with Hirshprung's disease as well, and she's very kindly come on to tell
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MIA's story and her story to do with Hirschworm's disease. We will also discuss
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the Facebook page as to why and how it was created and where it's going
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so far, and possibly where it's going in the future. And Melissa,
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welcome to Welcome to the podcast. Hello, thank you. So we're going
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to start with your daughter Mire's story. So Mia was diagnosed after a sort
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of a couple of days and she's now ten, is that correct, yes,
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eleven in July. Eleven in July. So we'll start with MEA's story.
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So whenever you're ready you can begin. Great, thank you. So,
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starting from the beginning, Mia was born two weeks early via please planned
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c section, but she weighed a healthy seven pounds four ounts it and we
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had no idea that anything was wrong. Then when we were in the recovery
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ward after the c section, Mia was just cutting it into me in a
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cute, quiet little baby, making a little cooing noise. And then the
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nurse came over and asked me how long she's been making the noise for,
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and she told me that sounds it does sound very cute, but it's medically
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known as a grunting and could indicate that something's not quite right, but not
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to worry, as it doesn't necessarily mean that there is anything wrong, or
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if there is, doesn't mean anything serious. So then as the day went
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on, Mia was just sleeping and in the quietest newborn little baby ever,
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and I keep trying to feed her and she was just taking a little bit.
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And then the next morning, I'm after a full night sleep, which
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is amazing after a new ball baby, I was still trying to feed Mere
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and and then she was and it was bright green, and so that sent
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off alarm bells with the doctors, and she still also hadn't still pood,
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so she was moved out to the special Baby care unit where they took blood
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test and X ray, feeding tubeing, and put into a little incubator.
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And then so the doctor came to me with the results of the x ray
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and they could see that something wasn't quite right with her bowels, and they
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thought it could be one of three options. So one being just a blockage,
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something simple, you know, they could clear the blockage and all be
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fine. Two could be Herschbrung's disease, which is where a part of the
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bell, all the whole bell, depending on how much affected, doesn't have
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any ganglion vowels present. And they said there's sales which make the bowl contract,
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essentially making making you open your bows. But all three the bow just
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hasn't grown properly and isn't attached to the rectim at all. So after some
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more investigations and tests that we found it was has Springs disease. And this
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was done by taking a biopathy of the lining of the bowels, so when
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they could see that there were no ganglion cells present. Yes, So from
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that we were shown how to perform bow wash out, which is what would
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help me to open her bowels. Who had done these twice a day until
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she was six weeks there will shout, we just got used along to.
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It's a catheter tube and you just pop it in the in the bowl and
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squirt some water in so it's like an irrigation and it just helps wash out
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the bows. But yes, she's six weeks old. She went in for
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her pull through procedure where they would remove parts of the affected bow and prosidure
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went well. It did take a lot longer than I thought it would.
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I was warned that it could take hours, and it neared to almost eight
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hours. But this is because they don't actually know how much of the bowel
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is affected, so they will take small amount of time, send it off
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to the lab and make sure the part of the bow that they're connecting that
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has ganglion cells showing. So and this was done quite a few times.
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They ended up removing two thirds of me as small intestine and that that was
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all going well recovering in a hospital after three days. The surgeon was happy
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was how Mia was recovering, and she said she was happy for her to
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be discharged the following day. And so that night, I didn't have the
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best experience with the nurse was caring for Mia and had to go out a
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couple of times with Mia crying in pain to ask for her to bring some
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painkillers, which Mia was overdue, as you eventually did. And that was
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that. I didn't see her against the rest of the night until she came
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in the morning, and I'd save some nappies like I was instructed to do
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by the surgeon so that they could weigh them. This was to try and
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judge if she's been Weian, just to try and get an idea if she's
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been Wien. But she just threw them in them in and then the surgeons
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came around to just charge Mia, and she projectile vomited right in front of
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them, almost got the doctor. So this then I then explained to them
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that the nurse hadn't been in all week. Mia was taking renitted in,
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which is a medicine for reflet so after checking her records, they did see
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that she had missed two doses of this medicine. So thought, okay,
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that's obviously why she's now being sick. We'll just give her that, and
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still happy, discharged Mia that day got home. Still Mia was still being
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sick after feeds, and even when we were giving her medicine, so did
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brush her back into any of the early hour the next morning where she was
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sent straight for an x ray and I didn't see her after the x ray.
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They sent her from there straight to theater for a lookotomy where the look
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but the consultant came and explained to me that the X ray was showing just
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black, just big black month that's all they could see. So they were
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thinking it was something to do with the bowels. Sometimes they get complications and
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there could be a loop in the bowel and then there's a blockage. But
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it actually turned out to be me as bladder. We've gone into retention,
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which is a risk from the was explained that could happen after following that,
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which is why it was waved enough you so we I was trained to do
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intermicent catheters on Maya maybe two hours until the bladders started working properly, and
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then they went down to four hours. And Mia now still has intermittent casters.
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She does six a day and she is starting to learn consluting in herself.
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So because of the bladder stretching so much, he got to four times
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the size it should be close to busting. I think it kind of loses
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the nerve, so her bladder is just still not working properly from it,
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which is why she still does them today. But going back to plash Brons
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disease, mia suffered quite a few times with a few bouts of entericlitis infection,
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which is Hashbrun's disease related. It's it can be quite a serious disease.
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If it's not treated really quickly, it could become fatal. So it's
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bacteria in the bowels. It just attacks and tacks about. I don't know
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why it happens, but they just know it happens to people with Hashbun's disease,
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and they know how to treat it. But it's one of the things
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with the rare disease that they don't look into it too much, do they,
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as long as they know how to treat things. Yeah, yeah,
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it did suffer with this quite a few times in a couple of years by
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life. But it's not too bad as she gets older. He has had
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it and she's old of it. It's not as can't get as serious as
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quickly as when a small baby. Yeah said, well, I'm sorry,
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whilst sorry, just one one question. I just had the the potomy and
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I said that, right, they're a popular crossb is that just where they
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make sort of small incisions in the stommach yea, so just above her belly
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butter and she's now got scar it's a slice. Yeah, yeah, thank
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you. So And actually, because she was such a small baby, now
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as she's growing where it's garred, she does have like so they might have
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to sort of recut it so it's heels as she Yeah, she was so
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tiny and it's kind of trying to grow with her but getting stuck. Good
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god, yes, sorry, So body training time came and then that became
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clear that Mia had no control over her vowels. And then from looking at
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sort of previous expos that she'd had and then doing another one, they it
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seems like Mia did pooh, but it was always very loose, so it
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actually they worked out that that's more likely to be an overflow. Still,
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so where she's actually constipated, the vowel's still not sort of working properly,
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so she's always getting backed up and then which can happen in her brothies.
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I've had some people have pulled through operation and that work, you know,
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straight away, and everything's okay, but a lot of times there are complications
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like this and you just need a bit of help. Some people would need,
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you know, a stonma or other things. You know, people think,
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well, you've had a bow removed, your fit, it's cured.
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That not always no, And yeah, she still does it to this day.
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She perhaps still have a bow wash out. Well, it's it just
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keeps the bow clean and clear. And and she now just that's you know,
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how she opens her bows. It's once a day and that's it.
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She's also learning how to do that. So yeah, yeah, well thank
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you, thank you ever so much for sharing. So you say that that
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Mia does the washouts sort of one once a day, and apart from that
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sort of happy, healthy, gets on with everything. And what happened as
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we do have the odd hic cup where she sort of has going through all
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she could be getting backed up. So sometimes to do a couple of washouts
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we learn. How she's getting older, we are learning and things are getting
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better. She knows or my tummy doesn't quite feel she still she says,
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it still feels full, so that we'll go we'll do a couple of washouts.
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It is for hush fal sea sufferers. So I'm surely you'll agree.
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You just learn how to mention things as you get older, and she's she
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knows now the difference of if something she eats is hurting her tummy, we'll
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avoid that, which I also think is quite common with Hashbeul's disease. I've
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actually sent me a for an intolerance test, and it showed that she is
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highly intolerant to dairy. That just makes really mutch that and she gets a
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bad toming like any intolerance people just but it also messes up the bowels.
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Yeah, we get away from dairy now she knows what chocolate, the real
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chocolate tastes like, and keep her with it forever. But yeah, she
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knows her limit. Yeah, I guess as as you. As you get
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older and have hershbrungs. There are people who are see a lot younger than
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me you have hershprungs, a lot older than me that have hershprungs who Yeah,
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you just sort of figure it out as you go. I'm always loath
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to give yeah, and I never give medical advice or anything like that because
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I'm not a doctor, I'm not a nurse. I don't know what I'm
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talking about. And when it comes to bedicite, but you do tend to
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to figure it out, well, figure out right, Okay, this doesn't
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work, or this does work. Okay, we'll try this, it works
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and maybe then at some point it doesn't so or I will change it,
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and this that and the other, and that's. Yeah, there is there's
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a lot more medical advice sort of out there than there was probably ten years
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ago when Meir was diagnosed, and certainly thirty years ago when I was diagnosed,
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but it is still very much, as you've alluded to, trial and
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error. Yes, yeah, definitely. Yeah. So from from this point
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obviously, one of the one of the main main things I look for in
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the podcast is some really inspirational stories. And that's why I really wanted you
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on the podcast, because you then from me as condition, then set up
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a Facebook page or to do with Hirshbrong's disease or specifically Hirshbrung's disease for people
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in the UK, people like me, which again something I know I've mentioned
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this on previous episodes, but thirty years ago, I know Facebook didn't exist
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and whatever, but something that certainly me and my parents would have been so
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so glad for because I never knew anyone else with Hirshbrungs until I was twenty
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five and with Hirschbrucks. So what was the Obviously the inspiration we can probably
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hazard a guess that it was. It was Mia behind the the inspiration behind
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the Facebook page. But why did you think right this, this is what
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I want to do. I want to set up this Facebook page and get
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people together in a sort of community. Yeah, I just because I felt
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so alone and I didn't have anyone to talk to you, and I didn't
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and I could research on Facebook and find American based ones, and it's very
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difficult because they use different medicines, different bum creams even for when they have
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the terrible nappy rash, and different procedures, and they they don't believe in
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the bow or shouts anything. They just different management. After so, I
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thought, oh, there must be more people out there in the UK like
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me, parents have visual struggling. So I just set one up and I
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did you get members? Pretty much straight away? People were requesting to be
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members. And it's great to be able to give advice to people or just
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say to someone, I know what you're going through, and I think it's
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nice. Two for yourself to go and speak just say something because I know
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you'll get it sort of thing. So yeah, yet it see fantastic,
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I totally get I've to speaking to my parents about about hirsh Bruns. One
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thing that they've said is that they did feel very alone. Yes, the
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hospitals were great and fantastic with medical information and you know, X is y
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and whatever whatever, but actually, okay, what's it like to live with
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you know, what what what does it look like on a daily basis?
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What what you know? Whatsh outs and medical stuff, you know, all
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of that stuff very very helpful with actually what are people's experiences? And we
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didn't you know, didn't have those experiences. But thanks to people like yourself
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and for setting up Facebook pages and having what you're close to about two thousand
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people take members. Just the under of people sharing their experiences. You people,
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I imagine, very very grateful and something I just wish would happen thirty
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years ago. It would have been would have been really really helpful. But
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the fact that's going on now is is fantastic, And kudos to you for
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that because I I think it's I've read obviously a few things and people just
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asking you know, general advice. You know, it's you know, not
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sort of big medical questions of how do I do this and whatever, but
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just sort of what's this like to leave with what? You know, what's
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well? And two? Yeah, and just things like, oh, what
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do you use as a distraction whilst you're performing your baby's wash out? And
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you know you wouldn't get that from a doctor. No, no, you
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can go and use you know, an iPad or whatever it might be.
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But yeah, no, and just just sharing little bits of info and going
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right, oh, actually I haven't tried this or that or you know,
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the like the different distractions. I think it's yeah, I think it's absolutely
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fantastic. And on that point, obviously we talked about the size of the
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communities of eighteen eighteen hundred or so. How pleased are you with the community
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response? Was it more than you thought? Would? You thought you'd get
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like a few hundred or several thousand. I can't so I wasn't thinking about
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that when I set up the page, but as the time went on,
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I thought, oh my gosh. Even when it got into the hundred,
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I thought, wow, this has got a good response. But obviously,
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like I thought, there must be so many people out there, and it's
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not just there are people on the page that don't live in the UK.
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I'm not going to not approve a member just because they don't live in the
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UK, but very obviously the terms of and the medicine and everything sall UK
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related. But yeah, I'm overwhelmed. And I still approving member requests daily,
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So yeah, I think it's just going to continue to grow, which
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is great because that means we've got support out there for parents and people with
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hirsh. Yeah, that's fantastic. I like the fact there's no border controls
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on the on the on the Facebook page, you can you can accept anybody,
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don't have to be a resident. No, I think I think it's
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fantastic. As I said before, like I have a flick through it and
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see things that you know, and I'm again one of the reasons I started
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this podcast was to learn more about Hirschbrom's and I've learned a lot from you
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and and your page, and I'm yeah, still having had it for thirty
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years, I'm still learning and I'm still thinking, right, you know,
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what's here and what's there and how are they treating this and how's it different
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to this long ago? A couple more questions on the page. Really,
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are there any hearts that or any experiences that have happened because of the page
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on the Facebook page that particularly stand out for you? Yes, so obviously
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I've I I comment on people's posts and like to help out. But I
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did, in particular meet this lovely family, a lovely woman called Shannel who
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messaged me her baby. I think it was about twenty nineteen, so we've
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sort of loossomed a friendship. She came down to Oxford and met up and
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Yeah, she was really really thankful that I've fore support and could sort of
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help her. It just this was before her little boy had go through operation.
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He's a baby. So back to what I said, when when you've
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at that days you you just feel so alone. So yeah, meeting meeting
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people new friends nice, knowing that you can offer how that let's go into
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relax them a bit more about things touch Yeah, No, brilliant And just
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finally on the page itself, you said that you're really surprised at how it's
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taken off and how many people are there. What do you see as the
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future or the page? How how not necessarily how big do you think it
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can grow? Maybe how big do you think it can grow? But where
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do you think the paid or what will it look like in the future.
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Oh, but I don't know. I just say that just continue as it
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is. Really, I don't think I could hope for more. It's somewhere
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for people to turn to when they and they don't have anyone else. You
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know, you know that you'll find someone. I mean, Hirshburn's disease.
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It's so broad that not everyone's going to have the same experience. But having
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this platform to go to, you are like you to find someone that has
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been through that will can offer you advice because not everythink that people post on
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the page I can give advice on because it's a different journey. But yeah,
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hopefully that it's just continue, Yeah, help more people love that.
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It needs to be a heartwarming, lovely, lovely little people. It's just
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yeah, fantastic. And I know we talked a lot about the Facebook page,
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and I'm well aware that I haven't even mentioned what it's called. So
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well here can people find find the Facebook page and find you? Yes,
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it called Hirshbrun's Disease. Family Support to UK and just go on your Facebook
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and type in the search. Yeah, fantastic, Well on behalf of the
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podcast. I'd love to thank you for your time and thank you for sharing
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me his experience, and also for setting up the Facebook page because I've recently
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found it and I thought by podcast in the UK, you're absolutely perfect for
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this. So I just want to say thank you so so much for coming
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on, sharing the story, being a great advocate for Hirshbron's disease and continue
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to doing continue to fantastic work that you do. Oh it's my pleasure.
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Thank you for contacting me. Wow, great to talk from your show lovely.
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Thank you very much, Gay, thank you. Thank you for listening
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to the podcast. Find us on Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen
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