A woman who endured 26 years of digestive problems and misdiagnoses finally has answers – but now has to consume ‘food’ via a tube that’s attached to her heart.
Sarah Cresswell, 30, from Bedford, was plagued with nausea, vomiting, pain, chronic fatigue, easy joint dislocations, seizures and brain fog her whole life.
Medics blamed her symptoms on coeliac disease, an eating disorder, ‘hormones and anxiety’, while testing for other illnesses, including Leukaemia, without success.
Finally, after fighting for answers, she’s been diagnosed with Ehlers Danlos Syndrome – a group of rare inherited conditions that make connective tissue weak– and Gastroparesis – a disorder where food passes through the stomach much slower than it should.
Today, she receives all the nutrients she needs through Total Parenteral Nutrition (TPN) – a feeding tube that goes straight into the bloodstream through the heart.
Far from being a burden, the tube has enabled Sarah to live independently for the first time in her life. She’s been sharing her incredible TPN journey on TikTok, with her most popular video racking over 16 million views.
‘I live a very sedentary lifestyle because I get tired very easily. But I am so, so grateful to be on this form of nutrition,’ she said.
‘It’s taken away my pain and misery and has enabled me to live for the first time in 30 years. I’m so thankful for it.’
For years, Sarah was also told that she had an ‘atypical eating disorder’ and that ‘anxiety’ was fuelling her digestive issues.
‘I have Coeliac disease too, so at first everyone thought it was just that and that eventually my symptoms would ease. But they didn’t,’ she said.
‘I suffered through my teens, even being tested for Leukaemia at one point. My stomach pain was always blamed on anxiety or hormones.
‘In 2018 I was told I had an atypical eating disorder and they wanted me to do inpatient treatment at a facility in London (I thankfully didn’t have to go), but once the diagnosis of Eating Disorder is on your file, it becomes incredibly difficult to get other doctors to take [you] seriously.’
In 2019, Sarah herself came across Ehlers Danlos Syndrome and Gastroparesis while researching symptoms online.
Feeling she was getting nowhere with the NHS, she paid for private healthcare, received an official diagnosis of Ehlers Danlos Syndrome, which led NHS doctors to finally link it to Gastroparesis.
Sarah was given a nasojejunal feeding tube that fed her directly into her intestines for the next three years. But in 2022 she had to have the tube removed after she contracted Covid-19.
‘I got Covid after having been so careful to shield and avoid it, but Covid ravaged my body,’ she said.
‘I couldn’t keep any food down or meds. I got a sinus infection, too, which meant my tube had to come out, so I was left without proper hydration for several weeks in the 40-degree heatwave.’
She began to experience an increase in seizures and was eventually admitted to Addenbrooke’s treatment centre in Cambridge, where within 24-hours she was given a TPN and was diagnosed with intestinal failure.
Sarah’s TPN works by feeding nutrients directly into her bloodstream through a line in her chest, called a Hickman line. She attaches a bag to the line every evening for around 12 to 15-hours, in order to get her full nutrients for the day, including amino acids, minerals, electrolytes, fats (lipids) and glucose.
Sarah has to be ‘very clean’ when handling the line, because an infection could very quickly lead to life-threatening sepsis. But using the bag has in fact increased her social life and independence, not hampered it.
‘If I go out in the evening while I’m connected, the bag hangs on my wheelchair so I don’t notice it,’ she said.
‘If I want to travel I have quite a lot of extra baggage to bring, but travelling in the UK is easiest (we put everything in the car) and if I wanted to travel abroad, I get extra baggage allowance.
‘I also have to keep the line dry in order to avoid infection; I can’t submerge it in water so that means I can no longer go swimming or have baths or get in a hot tub.
‘I miss that, especially as being in the water really helped my sore joints. Showering is fine because the water is constantly moving.’
Despite the obvious setbacks the TPN holds for Sarah, she remains overwhelmingly positive, which is spurred on by the positive feedback she gets from her followers on TikTok.
‘My followers on TikTok think it’s absolutely fascinating and I agree,’ she said.
‘Some people often pity me and tilt their heads as they say in a patronising tone ‘I’m so sorry you have to live like this’ or comment on my socials ‘I’d rather die than live like this,’ which I don’t like at all.
‘I can count on only one hand the amount of negative comments I’ve had. Thankfully everyone else has been kind.’
What is Gastroparesis?
Gastroparesis is where food passes through the stomach slower than it should.
Symptoms of gastroparesis start after eating and may include:
- feeling full sooner than usual – you may be unable to finish meals
- feeling sick and being sick
- tummy pain
- heartburn
- bloating
If you’ve had these symptoms for a while, you may also be losing weight. Speak to your doctor for advice.
Source: NHS.
Sarah says she also gains strength from her faith and her husband, who is her registered carer.
‘I have days where I really cannot be bothered to connect up – it’s like cooking dinner, no one wants to cook every day, but unfortunately there’s no take-away option with TPN,’ she said.
‘My positivity is really strengthened by my Christian faith. It’s only through the strength given to me each day by God that I can get through.’
Sarah is currently raising funds for an electric chair so that she can have more independence with her chronic illness. You can find out details via GoFundMe.
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