2 days ago
Scots teen suffered 'severe stomach pain' before life-changing diagnosis
Lucy Maine thought her symptoms were linked to her Postural orthostatic tachycardia syndrome (PoTS), which she was diagnosed with at age 14.
A Glasgow teen has opened up about her shock rare condition diagnoses following spells of nausea and extreme abdominal pain.
Lucy Maine has told that her symptoms were initially thought to be linked to her autonomic nervous system disorder, Postural orthostatic tachycardia syndrome (PoTS), which she was diagnosed with at age 14.
However, last summer, the now 19-year-old's symptoms worsened and she was rushed to hospital.
She told Glasgow Live: 'When I was admitted, I had low blood sugar. I was nauseous and I just kept throwing up. I was struggling to keep anything down and had excess saliva. It was put down to a virus because I had a high temperature, but the symptoms continued after I was discharged.
'After going back and forth to the GP, gastroparesis was mentioned as a possible connection to PoTS because they can both co-exist. I had such severe stomach pain and needed stronger pain relief, so I was then sent for testing.'
Lucy had never heard of the condition before her diagnosis and what living with gastroparesis would involve. That's before she stumbled across Guts UK, which helped her make sense of the condition.
'Guts UK was the first charity I came across when I was looking at information about the condition. The website explained gastroparesis in a really simple way, and there were pictures showing how food goes into your stomach and gets stuck, which made it easier for me to learn about it.
'I also read a woman's story, which connected a lot with mine. Although I saw she had a feeding tube, which I hoped I would never need. It was nice to see someone else with the condition, knowing that it wasn't just me, especially because she was close to my age.'
Lucy's initial treatment involved dietary changes, medication and nutritional supplements. However, not long into this year, Lucy was raced to hospital again after experiencing extreme weight loss, low blood sugar, nausea, and vomiting and she was fitted with an NJ feeding tube.
'There wasn't really a choice with getting the tube; I was barely able to speak and move in the hospital bed because I was so exhausted and weak", she explained.
"I just remember crying, I didn't want a feeding tube at all. I was really scared, and I didn't know anyone who had one. I thought a feeding tube meant I was going to be in the hospital all the time, which I've realised now, it doesn't mean that at all."
Lucy's NJ feeding tube goes to the start of her small intestine and bypasses her stomach, which is affected by her gastroparesis. Her tube is connected overnight and runs for around 13 hours.
Talking about life after her feeding tube, Lucy said: 'I have so much more energy. Even after a week of starting the feeds, I just felt so much more like myself. My weight has gone up, and my low blood sugar is much better controlled. I'm also about to start university, which at one point I never thought possible.'
National digestive health charity Guts UK is raising vital awareness of gastroparesis – a rare and often misunderstood stomach condition – as part of Gastroparesis Awareness Month this August.
The campaign aims to break down stigma, spark conversation, and provide reliable information about this debilitating condition that affects 14 in every 100,000 people in the UK.
Reflecting on why she wanted to share her gastroparesis story, Lucy said: "I think I just want to raise awareness of the condition because it's not that well-known. And share my experience so that if there's anyone else who's newly diagnosed, or suspects that they may have it, they may be able to relate and feel a bit less alone with it.
'I've learned to take each day as it comes, because there will be tough times, but also better ones ahead. It's so important to remember that. I always try to remember that this is my situation right now, and I don't know what the future will look like.
"I know there isn't a cure, and that can be scary. Also, try not to be afraid of having a feeding tube, it's there to support you, so try to accept it even though I know it's incredibly difficult.'
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