A 16-year-old has been diagnosed with a rare bowel condition that has left him stuck inside and connected to a feeding tube for 13 hours a day.
James Felix, from the Rhondda, was diagnosed with solitary rectal ulcer syndrome (SRUS) a year ago at Noah's Ark Hospital. SRUS is a rare disorder that often occurs in people with chronic constipation and can cause rectal bleeding and straining during bowel movements.
"It's been a horrendous year," said his mother, Linzi Coleman. "At the start, James started losing a lot of blood and I thought maybe it was a haemorrhoid and then I thought this isn't right.” Concerned for her son, she took James to the Royal Glamorgan Hospital and was later referred to Noah’s Ark Hospital to see gastroenterologists who diagnosed him with SRUS.
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Describing James' day-to-day routine, the 40-year-old said: “James goes to the toilet and loses pints of blood around 60 to 70 times a day and constantly prolapses.” Linzi added that he has to be connected to a feeding tube for 13 hours a day “just to keep some weight on - without it, the weight falls off him.”
Since his diagnosis, James has lost over six stone. Linzi said: “It’s heartbreaking to see him like this - he's gone from a chunky monkey to all bones.” She added: “James just stays in his bedroom and just goes back and forth to the toilet. He can’t go anywhere apart from hospital appointments.”
As well as having SRUS, James is autistic, has ADHD, extreme anxiety and quasi-psychotic experiences. Losing weight and being unable to leave his house has been detrimental to his mental health. He said: "I don't recognise myself no more - I'm half the boy I was." Linzi added that watching James go through this has been a "living nightmare."
Over the last few months, the family have been working with a consultant from Noah's Ark, which falls under Cardiff and Vale UHB, to find a hospital that will operate on James. The family have been advised that he needs to have a stoma bag fitted to relieve some of the pressure from his bowel. However, she claims letters sent by her consultant to ask the Royal Glamorgan Hospital and University Hospital of Wales to perform the colonoscopy have been rejected by the health boards and they are now appealing to hospitals in England.
She claims that the NHS system has failed her child and he has been left with "no quality of life." She added: “It’s absolutely ridiculous that no one is doing anything."
A spokesperson for Cwm Taf Morgannwg UHB said: “Although we are unable to comment on the specifics of any individual’s care, we are concerned to hear about the difficulties experienced by James and his family. We encourage the family to get in touch with us directly so that we can look at this case in more detail.”
A spokesperson for Cardiff and Vale University Health Board said: “While we are unable to comment on the care of individual patients, the Children's Hospital for Wales team are supporting James and his family to explore appropriate care. We appreciate how difficult this is for the family but would advise them to discuss any concerns with Cwm Taf Morgannwg University Health Board as their primary healthcare provider.”
In an effort to support James' medical needs and the possibility of having a private operation, a GoFundMe page has been set up. The target has been set to £1,000, but Linzi claims a private colostomy costs around £9,000 plus additional aftercare fees. If you would like to donate to James' GoFundMe, you can find out more here.
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