Day 5 - A trolley good tubie

My condition is called oesophagus dysmotility, I was diagnosed approximately three years ago, but I have been suffering for a lot longer, with frequent trips to the doctors who kept giving me antacids and all sorts of medications.

Finally I was sent as an emergency referral to the Leicester Royal Infirmary (LRI) as I had lost a lot of weight; I was there for four weeks where they put a temporary naso-jejunal tube into feed me, however I was still taking my medications orally and was very sick after taking them, so it was decided that I should have a PEG fitted. This was performed in the LRI pretty much straight away; I felt numb to the idea that I wasn’t going to eat but at that time I thought that it wouldn’t be for ever. 
Whilst in hospital, I had a visit from some very nice nurses from the HENS (Home Enteral Nutrition Service) team; they were fantastic and explained how I would be doing things from now on - this machine would become my best friend - after all it is keeping me alive! So, I have named my machine Arnie and put some stickers on my stand too, to make it a bit more personal. I use an Nutricia Flocare Infinity pump and I have one litre of cooled boiled water over six hours and then at 5pm I have my feed which is one litre of Nutrison Complete Multi Fibre and I have that over six hours too. My meds are ground down and put through my tube too; this is done three times a day.
After a couple of visits to see the consultant, I was told that there was nothing more that could be done, so, I would be fed through a tube and be nil-by-mouth for the rest of my life; it was like somebody had hit me with a ton of bricks. I went through a grieving process in a way, even to this day, I still have moments where I want to eat but cannot; I get so sad.
I live in Leicestershire. I am a mum, wife and I work part-time, which is currently full-time due to the COVID pandemic. My work has been fantastic and accommodating too, they have made sure that I get breaks to administer my fluids and meds and that there is a room for me to do this. As I work in a building society, I have a job that is based sitting down, so I do not have to worry too much about my feeding tube!
Every year my family and I love to go on holiday and the for the first holiday after my operation, I was very scared, I didn’t know what to expect. I was also nervous about how people would react to the fact that I am on the feed. There was a lot of things I had to take with me, but I suppose it is no different than taking food – it’s just that mine is a little alternative. Although sometimes people stare, after a time you just learn to accept this.
I had one instance where it did make me giggle, I was out shopping with my family and I had my feed on a stand, which was placed in the trolley; I was going through the checkout, busily packing my bags, I paid and then pushed the trolley away, completely forgetting that my feed was in the trolley and I went with the trolley, must be because I am so used to it! I have also done this when I have my backpack on and go and try and put it in the boot forgetting I’m still attached.
One frustration is the lack of knowledge that some hospitals have regarding artificial feeding. On one occasion the staff basically refused to give me my liquid feed for my PEG stating I should have brought my own in when I was in CDU (Clinical Decision Unit) for hours on end, whereas other people were getting sandwiches and cups of tea; surely it’s a basic human right to have nutrition no matter what or how they feed? They had no idea. I think some education is required.

HAN Week