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A woman who endured 26 years of digestive problems and misdiagnoses finally has answers \u2013 but now has to consume \u2018food\u2019 via a tube that\u2019s attached to her heart. <\/p>\n
Sarah Cresswell, 30, from Bedford, was plagued with nausea, vomiting, pain, chronic fatigue, easy joint dislocations, seizures and brain fog her whole life.<\/p>\n
Medics blamed her symptoms on coeliac disease, an eating disorder, \u2018hormones and anxiety\u2019, while testing for other illnesses, including Leukaemia, without success.<\/p>\n
Finally, after fighting for answers, she\u2019s been diagnosed with Ehlers Danlos Syndrome \u2013 a group of rare inherited conditions that make connective tissue weak\u2013 and Gastroparesis \u2013 a disorder where food passes through the stomach much slower than it should. <\/p>\n
Today, she receives all the nutrients she needs through Total Parenteral Nutrition (TPN) \u2013 a feeding tube that goes straight into the bloodstream through the heart. <\/p>\n
Far from being a burden, the tube has enabled Sarah to live independently for the first time in her life. She\u2019s been sharing her incredible TPN journey on TikTok, with her most popular video racking over 16 million views. <\/p>\n
\u2018I live a very sedentary lifestyle because I get tired very easily. But I am so, so grateful to be on this form of nutrition,\u2019 she said.<\/p>\n
\u2018It\u2019s taken away my pain and misery and has enabled me to live for the first time in 30 years. I\u2019m so thankful for it.\u2019<\/p>\n
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For years, Sarah was also told that she had an \u2018atypical eating disorder\u2019 and that \u2018anxiety\u2019 was fuelling her digestive issues.<\/p>\n
\u2018I have Coeliac disease too, so at first everyone thought it was just that and that eventually my symptoms would ease. But they didn\u2019t,\u2019 she said.<\/p>\n
\u2018I suffered through my teens, even being tested for Leukaemia at one point. My stomach pain was always blamed on anxiety or hormones.<\/p>\n
\u2018In 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\u2019t 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.\u2019<\/p>\n
In 2019, Sarah herself came across Ehlers Danlos Syndrome and Gastroparesis while researching symptoms online.<\/p>\n
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.<\/p>\n
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.<\/p>\n
\u2018I got Covid after having been so careful to shield and avoid it, but Covid ravaged my body,\u2019 she said.<\/p>\n
\u2018I couldn\u2019t 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.\u2019<\/p>\n
She began to experience an increase in seizures and was eventually admitted to Addenbrooke\u2019s treatment centre in Cambridge, where within 24-hours she was given a TPN and was diagnosed with intestinal failure.<\/p>\n
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Sarah\u2019s 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.<\/p>\n
Sarah has to be \u2018very clean\u2019 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. <\/p>\n
\u2018If I go out in the evening while I\u2019m connected, the bag hangs on my wheelchair so I don\u2019t notice it,\u2019 she said.<\/p>\n
\u2018If 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.<\/p>\n
\u2018I also have to keep the line dry in order to avoid infection; I can\u2019t submerge it in water so that means I can no longer go swimming or have baths or get in a hot tub.<\/p>\n
\u2018I miss that, especially as being in the water really helped my sore joints. Showering is fine because the water is constantly moving.\u2019<\/p>\n
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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.<\/p>\n
\u2018My followers on TikTok think it\u2019s absolutely fascinating and I agree,\u2019 she said.<\/p>\n
\u2018Some people often pity me and tilt their heads as they say in a patronising tone \u2018I\u2019m so sorry you have to live like this\u2019 or comment on my socials \u2018I\u2019d rather die than live like this,\u2019 which I don\u2019t like at all.<\/p>\n
\u2018I can count on only one hand the amount of negative comments I\u2019ve had. Thankfully everyone else has been kind.\u2019<\/p>\n
Gastroparesis is where food passes through the stomach slower than it should.<\/p>\n
Symptoms of gastroparesis start after eating and may include:<\/p>\n