By Shannine O’Neill
**WITH FULL PERMISSIONS**
THIS WOMAN is forced to eat her food through her HEART after being misdiagnosed for 26-years but has won 16M views online by documenting her plight.
Sarah Cresswell (30) from Bedford, UK suffered for 26-years from undiagnosed digestive problems, but since defying medics and fighting hard to secure a diagnosis of Ehlers Danlos Syndrome, she has now finally been able to live independently, even if it means her only food source is through a bag hooked up to heart for up to 15-hours per day.
Sarah has posted about her TPN journey on TikTok, with her most popular video racking over 16M views, with commenters overflowing the comment section with positivity and intrigue into her condition.
Sarah was plagued with nausea, vomiting, pain, chronic fatigue, easy joint dislocations, seizures and brain fog for nearly her whole life.
NHS medics blamed her symptoms on celiac disease while testing for other illnesses including Leukaemia, without success.
Throughout her journey of fighting to be diagnosed, Sarah was also told that she had an atypical eating disorder and the doctors even went as far as wanting her to do inpatient treatment at a facility in London.
Having the stigma of an eating disorder only strengthened Sarah’s struggle to get diagnosed correctly, until 2019 after Sarah herself came across Ehlers Danlos Syndrome and Gastroparesis while researching her symptoms online.
After realising she needed the help now more than ever as her symptoms worsened and the NHS would only mean more waiting time, Sarah paid for private healthcare which meant she was finally able to receive an official diagnosis of Ehlers Danlos Syndrome, which led the doctor to finally link it to Gastroparesis as well.
Sarah was given a nasojejunal feeding tube that fed her directly into her intestines for the next three years.
However, in 2022 when Sarah contracted COVID-19, she got gravely ill and had to have her tube removed due to her not being able to keep any food or medication down, alongside a sinus infection ravaging her body, which she was left without proper hydration for several weeks during a 40-degree heatwave in the UK.
This setback only led to more hospital admissions and increased seizures alongside not being able to keep down any food or medication.
After a four-week hospital visit that meant she vomited what her tube fed her every night, she was admitted to Addenbrooke’s treatment centre where within 24-hours she was given a TPN and was diagnosed immediately with intestinal failure.
A TPN, also known as Total Parenteral Nutrition is a feeding tube that goes straight into the bloodstream through the heart and gives the patient all the nutrients they need for the day in their simplest form.
Sarah was denied TPN until then due to her being so young, but once she was allowed it at Addenbrooke’s, she thrived by putting on weight that she had been unable to do for so long and fortunately she suffered far fewer seizures.
Sarah’s TPN works by the nutrients being fed directly into her bloodstream through a line in her chest called a Hickman line.
The tip of line sits right at the entrance to her vena cava which is a vein that goes directly into her heart.
Sarah does this every night and leaves the TPN in 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.
“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 me seriously.
“Multiple times I ended up in hospital with dehydration and extreme low blood sugars and vomiting, only to be seen by a psych doctor and never one from Gastro.
“When I eventually did see a Gastro doctor, they didn’t do any investigations except blood tests and a single endoscopy, but basically kept me in hospital until my blood sugars were stable enough to go home.”
Sarah had to fight to be diagnosed, having to do her own research before she had to pay to get private healthcare.
“I had to do my own research in the end, and that’s when I came across Ehlers Danlos and Gastroparesis in 2019,” she said.
“I ended up having to go private to get my EDS diagnosis because the NHS waiting times were too long and I needed access to help now; help that I could only receive if I had a formal diagnosis.
“Once I had that, I was diagnosed easily with gastroparesis on the NHS a month later, as my new Gastro doctor knew about the link between EDS and Gastroparesis.
“That’s when I was given the nasojejunal feeding tube, that fed me directly into my intestines. I carried on like that for three years.”
It was when Sarah contracted COVID-19 that the problems with her feeding tube heightened.
“In 2022 I got covid after having been so careful to shield and avoid it thus far, 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.
“This led to more hospital admissions and more intense and frequent seizures when I tried to eat.
“Finally, I was transferred to Addenbrooke’s where within 24 hours I was put on TPN and they diagnosed me instantly with intestinal failure.
“I spent two weeks there, making sure my body was reacting okay to the regime and it did. I began to put on weight and I only had one seizure the whole time.”
Although she still is not able to eat food through her mouth, Sarah is incredibly grateful at what having a TPN has given her in comparison to what she was going through before having it.
“I connect the bag to a giving set (long tube) and then connect that tube to my Hickman line,” she said.
“Then an electric pump administers the feed to me. I have to be very clean when handling my line, so I use an Aseptic Non-Touch Technique (don’t touch the key parts without sterile gloves).
“If an infection gets in or around my line, it can very quickly turn to sepsis, which can be life threatening.
“It runs for a minimum of 12 hours, I usually run mine for about 15 hours. I do it once, in the evening and it runs while I’m asleep and then I disconnect in the morning.
“It’s nutrients in their basic forms – amino acids, minerals, electrolytes, fats (lipids) and glucose. The white bag contains the fats. I have to alternate the clear bags and white bags to give my liver a break from ‘digesting’ the fats.”
Although Sarah has to keep the bag connected for 15-hours, she is able to carry it around in a backpack that attaches to her wheelchair.
“It’s in a backpack so it’s easy to transport,” she said.
“If I go out in the evening while I’m connected, the bag hangs on my wheelchair so I don’t notice it.
“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.”
Alongside the positivity that comes from her followers, Sarah states that 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.
“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.
“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.”
From being a self-employed Nutritional Therapist before she got too ill, Sarah has had to adjust her life to her new normal, but still finds the light in her days through her husband, volunteering work and writing her own book on guiding Christians on how to be there for someone with a chronic illness or disability.
“I was self-employed as a Nutritional Therapist (ironic right?) before I got ill, but I’ve taken a step back from that in the last year to recover my health,” she said.
“My husband is also my registered carer so he helps me with things like showering and dressing, because I struggle with pain and don’t have great fine motor skills.
“I’m currently writing a book and I volunteer at my local Food Bank doing admin work, which I really really enjoy.
“The steps involved to connect or disconnect or look after my line are a small price to pay for life.”
Sarah is currently raising funds for an electric chair so that she can have more independence with her chronic illness here: https://www.gofundme.com/f/
ENDS
