Being known for something different

Before I start I just want to apologise for my last post being quite gloomy. When I’m not well I tend to feel a bit more negative than usual despite my best efforts to stay positive.

Back to this blog post.

I’d you know me, you probably know that I am a massive fan of a certain band… Queen.

I’ve been a big fan for, I would say around 5 years now. I knew of Queen before… Who doesn’t know of Queen?! But I properly became a fan in 2014 after getting a sudden interest in their music and their story as a band.

Anyway… Instead of rambling on about the greatest band that ever lived…. (I won’t be able to stop.. believe me😂) Let me get to the point of this blog post.

Recently, a friend tagged me in a Freddie Mercury related post on Facebook. I get a lot of notifications from friends and family tagging me in all things Queen-related. So much so that I feel that the people I know, now know me as Katie – the big Queen fan and not Katie – the girl who has spent a lot of time in hospital, or Katie – the girl who was born with her organs on the outside of her body, or Katie- the girl with a disability.

I’ve noticed that a lot recently. People know me more for my ‘obsession’. (I say I’m not obsessed but apparently I am🤷‍♀️🤷‍♀️😂) with Queen. Not for my past or present.

And I’m not going to lie… I love it! Because it gives me more of a reason to feel ‘normal’! I’m at the stage now where despite being proud of what I’ve achieved and overcome, I’m much happier being referred to as an enthusiastic (I prefer that term😉) fan of an incredible band, rather than a poor, sick girl who has had numerous operations. I don’t like people feeling sorry for me. I’ve had to deal with horrible stuff yes, but everyone goes though their own horrible experiences, all different in their own way.

Come to think of it, why do we sometimes focus on what people have had to go through and know them as that? Why not focus just on how well they have over come it? The positives. Admire their strength, don’t feel sorry for what they’ve been through.

That’s personally the way I think we should look at others.

(this is a photo of me getting ready for my first Queen and Adam Lambert concert last year! 😁🤘)

It’s been a year??! 😱

A year ago today I made the decision to start a blog about my journey. Covering the highs and lows of it all and spreading awareness of Exomphalos, Dextrocardia, Depression, Anxiety and many other aspects of my life.

I can’t believe it’s been a year already!

Thank you to all my followers. Those who follow on here, word press, or on social media (you know who you are😉)

Thank you for all your interactions and support – it means alot!

I do try and upload when I can but sometimes there can be quite the delay in posting so I apologise for that.

Please do continue liking, following and sharing though! I’ve got some new, great content planned for this blog so stay tuned😊

I want to try and get my story across to as many people as possible! Hopefully I can help and assure others who are going through similar whether physically or mentally.

So please, if you read this, like and share this post!

Thank you again! And Happy 1 year to Katie’s Journey! 🥳😁

Katie x

Button Change

Every 3 months I have my feeding tube taken out and a new one put in. (it sounds worse than what it actually is).

Last night was the first night I changed my tube myself without a nurse assisting or even just being there. It was just me, and my kind of nervous dad. He and my mum have been trying to persuade me to book a nurse to come to our home to assist me in changing it, as I’ve always done for the last 6 years however I wanted to do it myself this time. (plus I was scared of contacting the nurse I had last time as she was a bit scary and basically quizzed me on everything I was doing whilst doing it – I felt like I was doing an exam on top of a practical!! 😂)

Anyway, I felt confident that I could do it myself! I just needed one person with me to pass me the stuff. There’s not much that can go wrong.

When I’ve told people that I have my tube changed every 3 months or so, they normally cringe a bit and ask if it hurts. 1, I know it sounds quite…. Icky? (couldn’t think of another word😂) but it’s really not that bad and 2, no… It doesnt hurt. It can be a bit sore but I’ve found a technique to help with that.

It’s not as bad as you might think. A nurse once described it to me as “taking out an earing and putting a new one in but without the back part” and it is, technically.

Above is a photo of all the equipment I use to change the button. (again… It looks scarier than what it actually is). I must say, it is all sterile and everything. Me and my dad (who was the one passing me the stuff) washed our hands thoroughly too – don’t worry we know about hygiene and sterile stuff from our experience of hospitals! 😉😂

Now I’m going to explain to you the parts I use (I don’t actually use all of it – I don’t need to)

This is cool, boiled water. I boil the water up in a kettle and pour it into a mug or cup or whatever and leave it for a while for it to cool down. I can’t remember the full reason why we do this, but I know it’s more clean and sterile to be put in the balloon of the button that way. We always do this when I change the water in the button every week too.

These are two syringes. One is filled up to its max of 5 mil – ready to put into the new balloon once changed. And one is empty and will be used to take the water out of the old balloon.

When changing the water in the balloon (weekly), I know if the balloon is fraying by the colour or consitency of the water… If the water is cloudy and/or a funny colour then I know I need to change the button soon.

Now this is the important bit…. The actual tube. I’m sorry I didn’t get a close enough photo (I forgot😂).

I’ve found a photo online… Source unknown…

So yeah… That’s what it looks like in its full form. And as you can probably see from my photo… Its so small!

The balloon… As you can see from this picture… Holds the tube in place inside. It doesn’t actually go that far into the stomach (as many people assume), well my one doesn’t anyway. It only covers the top stomach lining.

And it just slots into the small hole in my stomach. A small bit of plastic. My own belly button. And it’s the only belly button I’ve got.

So that’s all the equipment used to take an old button out and put a new one in. Now you’ve got all the info on each part.. Let me explain the whole procedure in steps…

1) I get the equipment ready and wash my hands (obviously..) I also test the new tube’s balloon by filling it up with water and taking the water out again. I need to make sure the balloon has no leaks or anything that could affect the position of the tube or tube itself.

2) I lay down in a comfortable position. (laying down is the best position as you’re muscles are more relaxed and not tense)

3) I get passed over the empty syringe and connect it to the little nozzle on the side of the tube. I then take out all the water in the balloon (should be 5 mil)

4) I disconnect the syringe and hold the tube in place. Its unlikely but there is a chance the tube could just pop out. I want to make sure I have the new tube in hand just in case. (it depends on the person but I have been told there has been some cases where the hole in the stomach has automatically closed once a tube isn’t present… And I can’t risk that as that means having another procedure to have another hole put in)

5) I start my breathing technique. I breathe in…. And out… And in… And out… And so on.. Until I feel ready to take it out. I take it out as I breathe out. This is a technique that I was introduced to a couple of years ago. It makes it less sore to pull out as your muscles relax as you breathe out.

6) Once its out.. My stomach makes weird noises (as expected…. Last night it sounded like my stomach was blowing a raspberry😅😂) and I get passed the new tube and pop it straight in. It literally just slides in.

7) I then get passed the syringe with 5 mil of water in and connect it to the side nozzle on the tube. I slowly fill the balloon of the tube with water.

8) I then give it a quick, gentle twist to make sure its secure enough but also free to move a little.

And that’s it. All done. The actual taking the button out and putting a new one in, takes a few seconds. It’s really not that bad…. But saying that, I’ve had to learn to adapt to it for the last 6 years.

Hope at last and … Gangnam style?

I’m a few days late but this post is going to be about what happened this month 6 years ago..

I think the easiest way is to share my statuses and explain them the best I can, so first of all, here are my facebook statuses from March 2013… (By the way – I did have the exact date for each of these but I’ve lost them😂 but they are in order! Haha)

So… this status above. For some reason, in my head they discovered my stomach was large in September 2012 … but by this status, maybe they discovered it later on down the line…

I remember having the tube inserted during x-ray (I was awake). They had to do it under x-ray because of the shape and size of my stomach. It wasn’t pleasant to say the least!

And yes… by this point I was very well known in the x-Ray department. As soon as I arrived I didn’t even have to say my name – they knew me so well and just was like “hey Katie!”😂.

It was also by this point, where I’d had enough of having time of school… I was bored and missing my friends. I was also missing normality.

And this is where Gangnam style comes in… ah. This story still makes me chuckle😂.

So… yeah. Also this status also mentions the time when my surgeon and his team ‘discovered the problem’ – which again, in my mind I thought that was discovered in September 2012 … obviously not🤷🏻‍♀️😂. But then again, this may have been an additional problem?🤔

So they found that by inserting a balloon inside of me… they could open up the top stomach valve which was almost so tightly shut .. so much so food was struggling to go down.

I remember being wheeled back to my ward after being in recovery and seeing my surgeon and his team standing outside my door… all smiling at me and my dad. It was weird … but a good weird….

When I find out why they were standing outside and what they had discovered – it felt like a massive relief! I was so happy that there was a reason as to why I had been struggling the way I had been – it wasn’t my fault! There was a problem there! And this problem could now possibly be solved!

Oh and the ‘Gangnam style’ situation …. I can still, to this day see my surgeon and his team dancing around the operating table to it…

I remember this PH Test… I had that tube down one nostril and my feeding tube down the other nostril … it was like my nose was a bloody charging socket! 🤣

I can’t actually remember the results of this test … I just remember how uncomfortable it felt..

Confidence

First of all I’d just like to say … again … I’m sorry it’s been so long.

Mentally I haven’t been in the right frame of mind. And I’ve been trying to decide and prioritise certain things in my life. I’ve been trying to focus on the things that mean something to me in hopes that it will take my mind off the thoughts in my head.

I’ve recently realised I need help. Help to understand what I’ve been through and what I’m going through. And I’ve went on to get that help.

The last few weeks have been a bit rocky but more recently I’ve started to feel more positive again. One of the things I struggle with is confidence. Confidence in myself. Mentally and physically.

Physically, my main worry is the way my stomach looks. It’s not necessarily to do with the scars. (Which a lot of people assume is the main worry). I’ve always had a scar on my stomach. I’m used to them. It’s the shape of my stomach. The way it sticks out on one side.

Due to the amount of major surgery I’ve had – I’ve now got no stomach muscle on my left side meaning my stomach has a ‘hernia’ effect to it. It sticks out more than usual.

I do wear support sometimes – mainly when I wear dresses or if I’m really bloated. But not always, as it does get a bit uncomfortable. A little while back at work, I was asked if I was “having a baby”. Now you’d probably think I’d be offended … but I wasn’t. In fact I found it bloody hilarious! (sorry for the language) I think it’s because I always thought I look pregnant – because from a certain angle it does look like I have a bump. And even though I found it funny at the time – overall Its made me wonder what people actually think. Like, if I was to walk around in one of those crop tops or something – clearly showing off my stomach – what would people think? Would they be disgusted? Would they feel sorry for me? What would they think?

I don’t know why but I think one thing that I think will help me with my confidence with regards to my stomach, is if I shared a photo of it. Just so it’s out there. I guess part of me is hoping that someone else with a similar stomach to mine (I know everyone is unique and different so won’t be exact) will pop up and maybe give me some advice.

So yeah, here it is –

It’s probably the most flattering angle I could find😂. I’m sorry the quality isn’t great – my phone is rubbish. But yeah. That’s my stomach😂. I also think it’ll be interesting to show anyone reading this who have read/know of my story an actual physical representation of what I’ve been through.

Also, I’m sorry if some of this doesn’t make sense – I’m a little bit tired haha.