‘I couldn’t eat without being in absolute agony and I was constantly tired. Some days I would sleep for 22 hours’
MUM WITH CHRONIC BOWEL CONDITION IS FED THROUGH A LINE IN HER CHEST TO OVERCOME PAIN OF EATING NORMALLY
A MUM has opened up about her exhausting battle with a debilitating bowel condition.
Natalie Maltby, from Carlton, was just 25 when she was diagnosed with ulcerative colitis.
The chronic condition causes the colon and rectum to become inflamed, with recurring diarrhoea, stomach pains and needing to go to the toilet often.
At the time of her diagnosis, Natalie had two children under the age of two. And within 18 months her condition caused her to be hospitalised.
While she was in hospital her large bowel perforated and she had to undergo lifesaving surgery to remove it.
For the next 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), so she did not need to use her digestive system.
A Hickman Line was inserted into a vein in her chest, giving her most of the nutrients she needed.
“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,” said the 40-year-old.
“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 she suffered her first bowel obstruction and, after narrowly avoiding surgery, started on TPN again.
In the last two years she’s had further obstructions as well as being diagnosed with Crohn’s disease, where parts of the digestive system become inflamed.
“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,” she said.
“I know some people are reluctant to go on to 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.
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.
Natalie Maltby
“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.”
Despite her health issues, Natalie refuses to let it stop her living her life. And she shares news of her battles with colitis in a blog called More Than Just a Bag Lady.
“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,” she said.
“While artificial nutrition is only needed for a small group of patients, it is lifesaving.”
She also fights to raise awareness of the condition across Nottingham and the charity PINNT, which provides support for patients and families on home artificial nutrition (HAN).
Carolyn Wheatley, PINNT chair, said: “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.”