Feeding Tube Awareness Week Dan's Story

I was born with a condition called CysticHygroma-where lumps appear out of nowhere,mainly on my face, neck and inside my mouth.

Tragically during my mum's pregnancy with me, my dad beat her up. We are not sure if this has caused or contributed to my condition or not. I had half my tongue removed when I was around 1 years old due to it being too big for my mouth.This left me with breathing and swallowing difficulties and so I ended up having a Nasogastric tube (NJ Tube) which is a thin flexible plastic tube that's used for temporary medical purposes which goes from my nose to my stomach, As I was growing up, I was in and out of hospital, which resulted in me missing my school friends and missing much of my studying and education. Due to my facial appearance and the tube in my nose I have been bullied most of my life - not just verbally but also physically. AsI've got older my past has caught up with me as I now manage a few mental health conditions. When I was 16 it was decided I needed something more permanent because when I had my NJ tube every time I coughed or was sick the tube would come straight out and the only way it was safe to put back in was lot's of A and E visits so it could be put back in using an X-Ray so Dr's was sure it went into the right place.

Around the year 2000 it was decided I had to have something called a Mic-key Button which is a low profile and discreet tube which allows me to receive my nutrient's, fluids and medication directly into my stomach. I have good and bad days and when I have good days I can eat as normal on a soft diet but when I have bad days I can't eat or drink orally at all and it all goes through my tube. I have it checked every month and have it changed every 4 months, because the tube is held in my stomach by water inside a balloon and regularly pop's. When this happens I have to find something quick to keep the hole open before it closes up, I've been known to insert a cotton bud into the hole and this is not ideal but it's better than closing up while I make my way to the hospital to have a new tube fitted. If the hole close's up before a new tube is fitted then the only option is to be admitted into hospital where they put me to sleep to open the hole back up and fit a new tube which I always try to avoid so keeping the hole open with anything i can find at the time is my only option.

Due to the Mic-Key button in my Stomach the body is always trying to heal up as it's not a natural thing and I regularly get either infection's or over granulation which is extra skin trying to close the hole. For the overgranulation it's very painful and sore and is treated with cream first and if this doesn't remove the extra skin then I have to go into hospital to have it cut off and this is also a painful procedure as this is normally done while I'm awake under local anaesthetic.

I can either be fed my Nutrient's using a backpack with a feeding pump machine which can be annoying when I'm out but it has to be done or I can bolus feed which is the delivery of my nutrient's using a syringe over a 10-30 minute period depending how much feed I need or require.

As I'm getting older my swallowing and breathing seems to be getting worse, but my goal is to live as long as possible and be pain-free and show as many people as I can regardless of my struggles that I try and carry on the best I can. Next as an employer has been amazing and I can't thank my manager Paul Jackson enough. He has been amazing and always picks me up when I'm feeling down and always looks at the  positives in people rather than negatives which has inspired me to go from strength to strength. NEXT referred me to Occupational Health where there's been some tweaks for me to still carry on doing my job and I can't thank them enough. NEXT is a great place to work, they don't discriminate on anyone's disability and will always when they can make adjustments so you can carry on doing your job.