I’m Natalie and my journey with artificial nutrition began way back in 2007 when, at the age of 25, tests showed I had Ulcerative Colitis (UC). I had just given birth to my second child, meaning I had two kids under the age of 2.
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.
I adjusted to life with a stoma, but it was hard, and I initially suffered with severe depression. My stoma used to block frequently and I needed a couple of revision surgeries, but even after those I was still having problems. I was also suffering with UC in the rectal stump and having repeated hospital admissions to try and control the flare ups. In 2012 things got so bad that my surgeon suggested I have my stoma reversed. I was referred to St Marks hospital and, in 2013, had the first operation to form a J-pouch out of my small intestine, followed by a second surgery in 2014 to take down the stoma and ‘join me back up’.
But again, things didn’t go to plan. There were complications during the first surgery and my bowel didn’t wake up properly after the second. As a result, a ten day stay in hospital turned into ten months! During this time it became clear that my bowel wasn’t working properly at all. It was no longer absorbing fluids, so I was constantly dehydrated, my electrolytes were all off kilter, I was losing weight and I was really poorly.
It was during this admission in 2014 that I had my first Hickman line and was started on TPN. Once I was stabilised and able to eat, I was moved off TPN onto IV fluids and discharged, having 2 litres of fluids a night, 7 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. We even had to move 150 miles from Hertfordshire back to Nottingham to be closer to family, as we were struggling to cope with 2 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. I was too frightened to seek medical help as I didn’t want to be admitted to hospital during the pandemic, but I had no choice when I got an infection in my Hickman line. Over the last 8 years I’ve had multiple line infections and I’m currently on line number 15! Having sepsis is incredibly scary. Sometimes it feels like I’m living with a ticking time bomb in my chest – I can’t live without my line, but worry that one day it will end up killing me!
In 2020 I also suffered my first bowel obstruction and narrowly avoided surgery. While I was in hospital I needed to have a blood transfusion, as I had become very anaemic. They started me on TPN again, having become extremely malnourished from living on little more than a packet of Quavers a day for months on end. In the last 2 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. 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.
But nobody prepares you for the emotional side effects of TPN and not eating. I soon realised that almost every social event involves food and drink: parties, BBQs, birthdays, Christmas, mums’ nights out, picnics… the list is endless. I know that some people avoid these situations, but that wouldn’t work for me. I’ve spent so much time in hospital feeling isolated from everyone that when I’m home I want to join in with everything. As a result I’ve found that I do a lot of the 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 Cath-dry line dressings, specially designed for Hickman lines. 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 8 years.
This journey has been tough and it’s far from over. I’ve recently started on Adalimumab (Humira) to try and control my Crohn’s disease and I’m on the waiting list for further surgery. I’ve found writing about my experiences in my blog, More Than Just a Bag Lady
, to be helpful. It helps me process what I’m experiencing and allows friends and family to keep up to date with what’s happening without me having to go over it with each of them. This in turn has helped to protect my mental health, which has been as up and down as my physical health.
Living with inflammatory bowel disease and being on TPN 7 nights a week has certainly presented some challenges, and I have spent a lot of time being angry at how my life turned out. It wasn’t meant to be like this, and I often used to wonder ‘why me?’ Now, though, I realise that everyone has challenges to deal with, and instead I try to think ‘why not me?’ Changing the way I think about things has really helped me to accept my illness. 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!