A mum in Nottinghamshire has described her 15-year-long health battle and the effect it's had on her life.
Natalie Maltby, was just 25 when she was diagnosed with a bowel disease in 2007 and had to receive life-saving surgery - and she was recently told she had Crohn's disease.
Now aged 40, she has given birth to her second child, but at the time of her ulcerative colitis (UC) diagnosis, she had two children aged under two, reported Nottinghamshire Live.
UC is a long-term condition where the colon and rectum become inflamed, which can cause recurring diarrhea with blood and pus, tummy pains and needing to frequently visit the toilet.
She said: "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. While in hospital my large bowel perforated and I had emergency surgery to remove it, saving my life."
For five years, Natalie faced constant 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, through a Hickman Line, which is a narrow tube inserted into a vein in the chest.
This would supply Natalie with the nutrients needed by her body.
She said: "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 an 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."
Crohn's disease is a lifelong condition where parts of the digestive system become inflamed.
Natalie 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. 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.
“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."
The council house and Greens Windmill will both be lit up in green to mark the start of Home Artificial Nutrition (HAN) awareness week which runs for the first week of August following an appeal from Natalie.
She also says the charity PINNT, which provides support for patients and families on home artificial nutrition (HAN), has been "incredibly supportive".
Carolyn Wheatley, PINNT chair, 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."
Natalie has also written a blog called More Than Just a Bag Lady, detailing further her health battles.
