Day 3 - My artificial nutrition story

"Still ‘me’ despite everything"

I’m twenty-eight years old and have Gastroparesis, gut dysmotility and intestinal failure.

My first experience of artificial nutrition was back in February 2015. After six months of being unwell, vomiting and weight loss, I was diagnosed with Gastroparesis; my stomach had stopped working. While under the care of my local hospital I had had different types of tubes. Some were more successful than others. I experienced a few problems with them; at certain points though there were glimmers of hope and I was successful in putting on some weight. Sadly because of my condition I knew things could change. We needed to get the right tube in the right place so I could be fed.

I was transferred to Salford where I had numerous tests. I now find myself with a percutaneous endoscopic gastrostomy for drainage and a central line for my parenteral nutrition (PN). I took the decision to transfer my care back to Leeds. It’s been a long road but finally I think I have stability with my care. Boy have I been on a rollercoaster ride with artificial nutrition! I’m thankful for my PN, without it I wouldn’t be here today. I hope that in the future I might be able to go back to enteral feeding, one step at a time; knowing that my nutrition needs to be stable is the main factor.

I’m determined to live my life and achieve all my hopes and dreams; I want to travel around America and spend time with my family. I'm a massive fan of musical theatre, my favourite shows being Joseph, my first ever show at four years old, not forgetting Wicked, Billy Elliot and The Girls. This year I had the opportunity to go to the Olivier Awards and it was absolutely incredible. I'm also a massive lover of football and support Crewe Alexandra FC (Crewe is my second home as most of my family live there as it's where my mum is from) despite supporting them from my hospital bed! I used to play a lot of badminton as well but although I can't play at the minute who's to say I can't in the future!! I could list so many people I want to thank for their support along my journey, I’ll say a collective ‘thank you’ to them all.

I've had quite a lot of tough times especially with the long stays as an inpatient but this all makes me more determined to do the things in life I want to do, as well as helping others along the way especially at a local level. At the end of the day I'm still me despite everything and why should this change!

Rebecca