The Journey To Here

Hello there you beautiful people

I thought today I would share the experience I have had so far and where I am at right now. I'm going to try keep it relatively short, but hey.. I'm female... I got a lot to say and there's a lot to catch up on! They won't be this long normally... I pinky promise :)

Gastroparesis for me, started pretty much out of the blue. I had spent near enough 3 months in sunny Boston, USA at a camp as a counsellor with the Camp America scheme. I had the time of my life and made friends that I know I will have for life. Especially as I am America OBSESSED, so to spend 3 months there was.... AMAZING!!! I highly recommend you give it a go if you like that kind

of thing! I got home in the September (extremely tanned may I add :p ) and that is when my life was about to be changed forever. I started feeling really full no matter how much or how little I ate and was feeling sick whilst in awful pain. When I did manage to eat a mouthful, it felt like it was just getting jammed in my chest and killed. Having a lump of food stuck in your chest is not cool, not only does it hurt a lot but I mean, who wants to end up with 3 boobs? You never know, if the food kept getting stuck it could happen... right? :)  I can't even begin to imagine how my parents must have felt sitting there watching their oldest child roll around the floor in agony and seeing me eat less and less until I eventually stopped eating all together. I lost so much weight and had gone from this bubbly character to someone who would get up, go to work, come home and go straight to my room into my bed. I became so down and depressed because I felt so ill and had no energy. Doctors trips were pointless and consisted of being told it was heartburn and being given Gaviscon or that there was nothing wrong with me. I had people and doctors telling me it was all in my head, that nothing was wrong. That I must be anorexic or I was looking for attention. I mean come on people, I've just spent 3 months eating my way through America... how can that possibly make sense. I'm a girl who likes my food :) what can I say?

By the May/June time the following year, I'd been through multiple different tests and medication trials. All of which came back clear and didn't work! Eventually we got answers. I had a sense of relief yet horror all at the same time if that makes any sense. On the one hand, someone believed me and found something and was telling us that, actually, there is a problem, it's not in my head. Although on the other hand.... I was pretty much screwed. There's no cure and few treatments that successfully help! Would I ever get to eat again? Would anyone support me? Was I going to die? My head was spinning at 1000mph.

My specialist suggested getting a feeding tube as my body was pretty much going into complete shut down. Can't blame it I guess... it was running on - well - oxygen! This would hopefully get my nutrition up and give us more time to figure out the next step!

And so.... the treatments began!! 

The NJ Tube - don't I look ravishing?

I first had a Nasojejunal Tube placed. It's a tube that goes up your nose, down your throat into your stomach with a tube that goes on into your small bowel/intestine. That's the place your food ends up after your stomach is finished with it. Not going to lie, I HATED it. That's an understatement of how much I hated it. It was so uncomfortable and I kept wanting to throw it up as it would rub on your throat every time you swallow or talk or well... anything. Seriously, hats off to people who manage to cope with it for more than a week like I did. I'd have panic attacks from it and cried and complained and wanted to just pull it out even though I knew it was there to help me. 

My Saviour 

My specialist then decided to move forward faster and give me a PEGJ tube. It's exactly the same idea but hangs out your stomach rather than your nose. It was for all intense purposes, my willy! It was with me all the time and dangled right down which was never fun when showering and well... being naked in there because that's what you do in the shower haha!! It saved my life and although emotionally it knocked me hard and I hated it and was really down - It saved my life and I probably wouldn't be here now had I not had it and got the nutrition I needed.

You Gotta Do What Ya Gotta Do!

Teddy hanging out with my dinner

2 weeks worth and not including meds

My life style completely changed. Instead of planning my life around shops or friends or even work, I was planning my life so I was about to fit in a 12 hour long feed and being connected up to a machine! 

If you think about it, I went to the toilet whilst connected to my feed... 

that's like eating a sandwich or a Sunday dinner whilst having a pee... or more HAHA!! So gross!! Though I did have a great party trick. My dad always joked I could out drink anyone. All I needed was to drink and then syringe it out through my tube before it got into my system and affected me. Could have been AWESOME!! My room became full of boxes with my feed and medication and all the different parts needed to set up and run the feed itself. My room turned into a hospital set up - NOT an almost 21 year olds room! I hated it! 

The tube caused skin granulation and infections and was so painful! I became so self conscious as I had a tube hanging out of me.

Next on the list was the Enterra Device. A pacemaker in my stomach is crazy and people are convinced I'm confused where I have it when I tell them it's in my stomach. They probably think, ah there talks the medication again! BUT... before getting it comes the NHS. I was fortunate enough I got approval pretty fast to get mine as I know many who wait months and fight to get it funded.

Tube and Scars from the Op

Surgeon Ted was by my side

So, October of last year I went into the hospital once again to have my Pacemaker popped in. I've had various settings changed over the last 10 months with many ups and downs. It has helped my nausea a lot for the most part but has done nothing for my pain. I am now under a new pain doctor who I absolutely love so am praying he can help me. I have tried countless amounts of pain relief even medications that are usually used for Epilepsy and Depression but none have worked and I've ended up getting a lot of the side affects from them. I've had many high points where I've managed to eat a meal a day in the evenings and kept it down but had to just sit down for the rest of the night from pain. Then I've had the low points where I have been sick and/or been in so much pain I can't breathe and in tears for hours. Which ends up with me not eating for days or weeks at a time again.
 Don't forget to check out my VLOG I did of my journey too which includes the Pacemaker footage 

http://www.youtube.com/watch?v=92KXsD22aAk

The next step we are trying is Nerve Block. Yep, that is when they just block the nerve. So, if it works my new party trick will be 'I bet you 1million pounds you can't hurt me in my stomach'! HAHA Hey, you have to try see the funny in everything!! They block the nerve with the injection which basically in our language stops the nerve working and sending pain to the brain. The nerve block is being done tomorrow (Thursday) so all our fingers and toes are crossed firmly! This feels like it's my last hope. If this doesn't work, I have no idea how we will get the pain sorted and whether I'll be able to eat anything again let alone particular diets that work for me. 

Well, I'm going to leave it there for now... if you made it to here and you're awake - YOU ROCK hahaha

Be sure to pop your email in on the page to get updates of when I post a new entry and please leave comments below. I'd love to hear your thoughts and answer any questions! Be sure to check out my youtube where I post videos and have a blast.. come join the fun!! 

Until next time... 

Stay Strong

<3