Agony of Hull woman 'who looks eight months pregnant' due to bowel condition
A HULL woman who was promised a life-changing operation to end her 15 years of agony has now been told it has been delayed.
Joanne Turton, 33, says she has suffered from an undiagnosed bowel condition, which has severely bloated her stomach, since she was 18.
After thinking doctors would never find a cure, she was finally trialed on a revolutionary machine, which instantly relieved her symptoms.
She even had her operation booked to have the device fitted permanently – finally putting an end to her suffering.
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But last week, days before the operation was due to take place, she was told it would not be going ahead on the day she had planned.
Miss Turton, who is mother to a five-year-old daughter, said: "Ever since I've had this condition, I've had a bloated stomach and it looks like I am eight months pregnant.
"It hurts all the time and I get stabbing pains in my side.
"It has affected me all my life and means I can't go out and socialise with friends like a normal person.
"I was so excited to finally be getting the operation. It was a relief knowing there was finally a light at the end of the tunnel.
"But now I've been left in limbo and I don't know what is happening."
Miss Turton, of east Hull's Ings estate, says she can only find one other example of anyone else having the procedure.
It involves putting a pacemaker-like device into her bowel to regulate her movements.
The operation is known as a gastric electrical stimulation procedure.
After searching on the internet, Miss Turton says only one other similar diagnosis could be found – a patient living in America.
She said: "When I had the trial they put it on the outside of my body with a tube leading down my throat.
"It instantly made me feel better and for the first time, I felt normal."
Miss Turton was originally told her operation would be taking place at Castle Hill Hospital in Cottingham on April 9.
But last week, when she phoned to get a confirmation letter so her mother could get time off work to look after her daughter, Miss Turton was told the operation had been cancelled.
She tried phoning her own GP and her surgeon to find out what had happened.
Some medical professionals told her the operation had been cancelled, while others thought it would be taking place in Scotland.
Now, NHS Hull Clinical Commissioning Group (CCG), the body that funds operations for people living in the city, starting from April 1, says it will fund the procedure, but cannot confirm when or where it will take place.
Miss Turton said: "I was arranging for someone to look after my daughter and I had started packing my bag ready for April 9.
"I'm relieved the CCG has said it is still being funded, and not cancelled, but I still don't have a proper answer.
"I was all set to go to Castle Hill on April 9, but now I'm not sure what is going on."
A spokesman for NHS Hull CCG said funding for Miss Turton's treatment had been approved by its Exceptional Treatment Panel.
They also explained it would not be taking place at either Hull Royal Infirmary or Castle Hill Hospital – the two bases run by Hull and East Yorkshire Hospitals NHS Trust.
The spokesman said: "The funding for Miss Turton's treatment was approved by Hull CCG Exceptional Treatment Panel and this funding remains in place.
"The highly specialised nature of the gastric electrical stimulation procedure means that few centres in the country are accredited to undertake it.
"Hull and East Yorkshire Hospitals NHS Trust is not one of these accredited centres.
"It is extremely regrettable that the communication with Miss Turton did not make it clear that her procedure would need to be carried out with an accredited provider.
"This is a matter we are urgently reviewing internally and in conjunction with Hull and East Yorkshire Hospitals NHS Trust.
"In the meantime, we would encourage Miss Turton to either contact her doctor or the CCG directly to discuss this matter further."
When the Mail asked whether a new venue and date had been set, the spokesman said: "We cannot confirm that information at this time."
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