Caitlin White, 19, suffers from severe gastroparesis
A teenager with a rare gut condition that causes her to vomit up to 30 times a day has described the difficult choices she faces.
Caitlin White, 19, from Perth, suffers from severe gastroparesis.
Her current treatment includes daily hospital-based infusions which can take up to 12 hours and risk infection.
She says another treatment could bypass her gut, but that also carries major risks.
Her condition basically means there is a delay in emptying her stomach, which causes her to vomit regularly.
Other conditions are also at play which effectively programme her body to be sick.
Hospital visits
Caitlin described her complex condition to presenter Kirsty Wark on BBC Scotland’s Kaye Adams radio programme.
She said: “My day-to-day life is dominated by hospital visits.
“I attend a hospital every day for blood checks and infusions which can last from four hours to eight hours.
“On the odd day it can last 12 hours, like it did yesterday (Sunday).
“I’m not allowed to drive because of the condition. I’ve also got postural tachycardia syndrome, so my heart rate tends to increase.”
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Caitlin White
As a child Caitlin did not suffer from the condition, but first became ill when she was 14
Caitlin first fell ill with the condition when she was 14 and when her weight was 11 stone.
She now weighs just six stone (38kg).
Over the past five years, the symptoms have become more acute and her treatment has had a major impact on her life.
She said: “The doctors can try anything up to 18 times to get a drip into my arm, because I’ve got such bad venous access.
“Once they eventually get a drip in, my infusions run and then I go home.
“I obviously eat and drink when I am at home and when I am at the hospital too.
“But I have had septicaemia seven times this year because I have got such a low immune system.”
Her condition has totally changed her relationship with her friends, many of whom have moved on with their lives.
Caitlin said: “I wouldn’t go out for a meal or coffee with my friends anymore because I would be very embarrassed.
“When I’m out I take containers or cups – I’m just not the same as my peers any more. They’ve went on to university and things.
“I still keep in touch through Snapchat and Facebook and things but I don’t see them as much.”
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Caitlin White
Caitlin used to want to be a teacher or lawyer but now says she wants to travel or do something involved with medicine when she is better
Asked how the condition has changed her outlook, Caitlin said: “When I was younger I thought maybe (I wanted to be) a teacher, or maybe a lawyer.
“But now probably when I’m better I would hope to do something involved with medicine or travelling probably.”
She was receiving treatment at Ninewells Hospital in Dundee but her care there ended. She now attends Perth Royal Infirmary.
Following an intervention by Scotland’s chief medical officer, she recently saw a consultant in Glasgow who advised that total parenteral nutrition (TPN) may be a possible course of treatment.
‘Lot of risks’
This would involve a line which delivers nutrients straight to the liver and bypasses the digestive system.
Caitlin described the predicament she now faces.
“There is a lot of risks associated with (TPN),” she told listeners.
“It’s a Catch 22: if they decide to give me feed (into her gut) I’m at high risk of ‘re-feeding syndrome’, infections and blood clots.
“But if they don’t do it, I am also at risk of infection. I’m malnourished as it is, and there’s (the risk of) organ failure as well.”
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Caitlin currently receives her treatment at Perth Royal Infirmary
Dr Neil Jamieson, gastroenterologist at Raigmore Hospital in Inverness, said gastroparesis was a very difficult condition to treat.
He said: “Thankfully most of the people who have it aren’t as severely affected as Caitlin.
“The majority of people have diabetes and the nerves are damaged in the stomach, and the stomach doesn’t empty properly.
“But in these severe cases it is very difficult because often it affects young people who lose their independence. It’s a very emotive area.”
He said: “There are studies under way to look at medicines that might help improve the emptying of the stomach.
“But it’s actually very difficult (when) the nervous system is affected – that tends to be one of the most complex of the systems to influence.
“It’s a very complicated system in its own way – and to replicate that or just trigger it to work with medicines is very difficult.
“We really are looking to support people as much as we can when they have got such severe disease.”
‘Last resort’
With no direct experience of Caitlin’s case, he said doctors tended to view TPN – if it’s going to be used in the long-term – as potentially “a last resort”.
He said: “It’s not something that is realistically achievable for many years without some risk of complication.
“The gut really is what we need to be feeding if at all possible because it keeps it healthy, and the risks of feeding into the gut are so much lower.”
Asked what were her hopes for the future, Caitlin said: “In general, I just hope that my health will improve altogether.
“I would hope that someone would be willing to consider TPN and give it a try.
“Or (I hope) there’s a specialist out there who knows how to reduce the vomiting.
“If the TPN was established, the vomiting wouldn’t be as frequent because I wouldn’t be taking in as much orally.”
