A woman from Cheltenham has spent the last 16 months in "excruciating" pain and came to be just hours from death before she was finally correctly diagnosed.
Rebecca Bostock, 32, was told the pain and sickness she experienced for more than a year was down to Irritable Bowel Syndrome or sickness.
But during a visit to A&E on Good Friday this year, doctors realised she was just hours away from passing away because of a rare medical condition.
Rebecca was rushed into an operating theatre for an emergency life-saving surgery, and now is on the long road to recovery. Thankful to be alive, she now wants to warn others about Superior Mesenteric Artery Syndrome (SMAS), also Known as Wilkie's disease.
"The last 16 months have been hell," said Rebecca."I have been going round and round in circles being told it was probably down to IBS or endometriosis.
"I'm so thankful to the doctors and nurses who saved my life that I get emotional just thinking about it."I was hours away from losing my life and I want to make sure the same thing doesn't happen to anybody else."
Her long and painful journey began in January 2020, when doctors first investigated her symptoms, which included stomach swelling, fever, sickness, diarrhoea and dizziness.
Across the next 16 month months, Rebecca had scans and numerous hospital visits. But, doctors told her it was probably Irritable Bowel Syndrome or endometriosis and prescribed her medication which she says the side effects of made her feel worse.
During this time she lost about three stone in weight and could not work.
Rebecca found changing her diet seemed to work for a short time but eventually she reached the point where there was hardly anything she could eat. And because of Covid-19 limitations on visiting hospitals, her partner, Chris Turton, 32, could not attend her appointments with her and explain just how bad it was.
"It's very rare and it has the same symptoms as so many other conditions so I was told it was probably IBS or endometriosis, " she said."The pain was excruciating and I got to the point where I was being sick all the time and struggled to walk or breathe."Doctors were investigating whether she had pelvic congestion syndrome when she was rushed into hospital after partner Chris phoned 111.On their advice, he drove Rebecca to A&E at Gloucestershire Royal Hospital where doctors diagnosed SMAS and gave her emergency duodenojejunostomy surgery.SMAS is a condition of the digestive system which affects fewer than one per cent of the population and occurs when part of the small intestine is compressed between two arteries, causing a partial or complete blockage.
This compression causes partial or complete blockage of the duodenum.
"My stomach was swollen so much that I couldn't breathe and was essentially crippled," Rebecca added."At the hospital they took me into imaging and I am so grateful to the surgeon who spotted that I had this rare but life-threatening digestive condition and needed the operation straight away."They told Chris I wouldn't be alive in a few hours time if I didn't have it. It's really frightening to think how close I came but now I am just relieved it's over."
The operation removed the blockage and opened up the pathway, and meant more than a week after the corrective surgery she cannot eat solid foods.
But despite the difficulties she continues to face, Rebecca is determined to teach the world about the rare condition so that others can learn to spot the signs earlier."It's been hard, hard, hard, and I don't want anybody else going through the same thing," she said."The only way to do that is to raise awareness so people know to rule out SMAS if anybody has these kind of symptoms."It's important more people know about it because if I wasn't taken into A&E that day I would not be here to tell my story now."
Symptoms of SMAS may include:
The syndrome cannot be diagnosed by x-ray alone and the signs and symptoms can vary greatly from one person to another, so doctors must go through a process of excluding other causes first.Delays in diagnosis are common because symptoms are non-specific and this may result in significant complications.