Two iconic buildings in Nottingham city centre will be illuminated on Monday night (August 1) as part of a Carlton woman’s campaign to raise awareness of an artificial nutrition that saved her life.
Natalie Maltby appealed to Nottingham City Council to illuminate the buildings to mark the start of Home Artificial Nutrition (HAN) Awareness Week which runs for the first week of August.
Natalie, who is currently undergoing treatment at the Queens Medical Centre, began her journey with artificial nutrition in 2007 when, at the age of 25, she was diagnosed with Ulcerative Colitis (UC).
Natalie said: “I had just given birth to my second child, meaning I had two children under the age of two. I assumed I would just be able to take a couple of tablets and be fine, but within 18 months my UC had got so bad I was hospitalised. Whilst in hospital my large bowel perforated and I had emergency surgery to remove it, saving my life.”
For five years Natalie faced repeated hospital admissions, including undergoing stoma reversal surgery in 2012 which led to a 10 month stay in hospital. In 2014, Natalie started on Total Parenteral Nutrition (TPN) through a Hickman Line – a narrow tube inserted into a vein in the chest.
“Once I was stabilised and able to eat, I was moved off TPN onto IV fluids and discharged, having two litres of fluids a night, seven nights a week. Sadly, as the years went on my health deteriorated further and I had to give up my job as a HR manager and it was a struggle coping with two young children and the challenges my illness presented.
“At the end of 2019 I started feeling really rubbish. I couldn’t eat without being in absolute agony and I was constantly tired. Some days I would sleep for 22 hours! When the world shut down with Covid in 2020 I didn’t even notice, as I was spending all day, every day in bed. In 2020 I also suffered my first bowel obstruction and, after narrowly avoiding surgery, I started on TPN again. In the last two years I’ve had multiple bowel obstructions and been diagnosed with Crohn’s disease. Last year, my consultant advised me to stop eating as it was causing me so much pain and making the obstructions worse, so TPN has now become a permanent fixture in my life.”
TPN is a method of feeding that bypasses the gastrointestinal tract. A special formula given through a vein provides most of the nutrients the body needs.
Natalie continued: “I know some people are reluctant to go onto TPN, but for me it’s been a relief to finally get proper nutrition into my body, which in turn has made me healthier and stronger. Unfortunately, it’s hard to be prepared for the emotional side effects of TPN and not eating. I soon realised that almost every social event involves food and drink – parties, birthdays, mums’ nights out – the list is endless. I’ve found that I do a lot of cooking at home as it gives me a way to experience food without eating it. I still sit down at the table at dinner time as it’s one of the rare times we are all together as a family and it’s an opportunity for me to talk with my now teenage children.
“One thing I really missed doing as a result of having a Hickman Line was swimming. But I’ve recently discovered a waterproof dressing, when I go on holiday to Cornwall later this month, I will be able to go swimming with my kids for the first time in eight years.”
Natalie’s found that writing her blog, More Than Just a Bag Lady, has changed the way she thinks about the challenges of living with IBD and being on TPN. “I still have days where I’m so poorly I can’t get out of bed, but on my good days I’m determined to live life to the full and say yes to any opportunities that come my way!
“While artificial nutrition is only needed for a small group of patients, it is lifesaving, and I hope this illumination in Nottingham will raise awareness of it, and the incredible support that PINNT provide.”
PINNT is a national, independent charity which provides mutual support and advocacy for adults and children and their families adapting to life on home artificial nutrition (HAN). It is estimated that around 50,000 people in the UK are dependent on enteral nutrition at home, while around 2,750 rely on parenteral nutrition (where nutrients are delivered directly into the bloodstream) at home.
PINNT Chair, Carolyn Wheatley said: “HAN includes parenteral, enteral and oral nutritional supplements and, every year, HAN Week is dedicated to raising awareness of these lifesaving, life-changing home treatments that provide nutrition and hydration for people without the ability to eat and drink normally.
“The conditions that Natalie lives with – Ulcerative Colitis and Crohn’s disease – are fairly well known, but living on TPN is lesser so, and this illumination is an opportunity to get people talking about its importance. Natalie’s story and her drive to raise awareness in Nottingham is truly inspiring, and I hope empowers others to share their stories.”
To find out more and get involved with HAN Week 2022, visit pinnt.com or follow us on Twitter @PINNTCharity.
