My Experience of Stomach Surgery (Part 1)

It’s just hit me. I’ve basically told you the basics of my story on this blog. What I’ve had done, my condition etc.

But I haven’t fully gone through my experience of having surgery… Especially major surgery.

So here I go.. I hope in some way this may help someone going through similar HOWEVER I must say, every patients’ surgery of any kind is different. In my story there may be some hard to read parts as well as positive parts… But that is just my experience. Like I say… It is very important that anyone reading this understands that EVERY surgery is DIFFERENT!

Okay now I’ve put out my disclaimer, back to my surgery story…

I’m not going to talk about my surgeries as a baby as quite frankly.. I can’t remember any of them😂

So I’m going to start with my first major surgery as a 15 year old girl.

At the age of 15 most teenage girls should be preparing for her GCSEs, going out with friends.. Just being a teenager. Unfortunately I didn’t have that experience.

My first surgery as a 15 year old wasn’t major (I was just put to sleep, had a camera put down my throat to examine my insides, and had a picc line inserted) but it was still a little scary. I mean, I was putting my life in someone else’s hands for a few hours!

But all went well. Time went super quick! (I was asleep for most of it so🤷‍♀️😂)

Now… Fast forward a few months after that procedure. My (unofficial) first major surgery. This is the one where I had my organs moved around and I was in theatre for over 10 hours!

Let me start at the very beginning of that day..

6:30am (roughly) : I woke up in my room at the hospital. I didn’t have a great night.. The thought of what was to come imbedded in my mind.

I didn’t know what to do so I just stared at the wall in front of me.. Thousands of thoughts going around in my mind. I heard the night shift nurses quietly having a chat. I heard alarms going off in the distance. I heard my dad snoring away.. Haha.

As I was focusing on all the sounds around me, my nurse popped in to do a few observations. Blood pressure, temperature, that sort of thing. We had a chat, a giggle about dad snoring etc.. I then asked her what time I’m due to go down to theatre. She told me it was still 7am.. As decided the day before.

Once she’d finished my obs she left.. And by this point my dad had woken up. One member of my surgeons team and the anaesthetist came to see me to have a chat and have me and my dad sign a consent form.

As the minutes got closer and closer to 7am… My nerves began to kick in. I felt sick. I was scared. I didn’t want to go through with it but at the same time I knew I had to otherwise I could put myself in danger if I didn’t.

It got to 7am and I hadn’t been summoned.. There must have been a delay or something. I had my gown on and was ready to go. Eventually.. at around 7:15am, my nurse knocked at my door, opened it and said those words that I’d been silently dreading.. “they’re ready for you now”.

After I heard those words, something clicked and everything suddenly felt super real. I felt a wave of nausea and rushed out of my bed, to the nearest outlet that I could be sick in.. The sink in my room. (Sorry for the grossiness)

I burst into tears and started shaking. I knew this was all just nerves, and so did my dad and the nurses. I had to let it ride. I just wanted to stop time there and then, either that or fast forward time to ignore this stage.

I got back into bed once I’d calmed down a bit. I did a few breathing exercises as the porter unclamped my bed and began wheeling me out of my room and down the ward corridor. The rest of the nurses and doctors on shift were at the nurses station all waving me off and saying “good luck” and “you’ll be fine!”. My dad and nurse walked next to me. My dad making bad jokes to try and lighten the situation… As he always does.

We got into the lift and went down to the ground floor. Because it was quite early there was hardly anyone around. It was pretty much silent as I was wheeled towards the surgery department. Once I’d been put in my bay… There was a bit of a waiting period. I had to have checks done again. Asked various questions. Checked my id bracelet. All that Jazz. Dad had to put a gown, hat and special shoe covers on as he was coming into theatre with me (he looked hilarious! 😂)

The time we were in that bay felt really long! Like it felt like it dragged. Eventually though, they were ready for me. No turning back now.

They wheeled me into the theatre. There was a lot of surgeons in there. I think there were specialists for nearly every part of my body (especially my digestive organs). I moved from my hospital bed to the operating table. I felt like crying again and looked at dad. He held my hand and tried to put on a brave face for me but I could tell he was just as scared. The surgeons fitted me up with all the needed equipment, gave me a foil, warm blanket to keep my body temperature stable. They then run through the questions and checks (again! 😂)

The anaesthetist then looked over me and asked if I was ready. I nodded and gripped onto my “lucky” Teddy (I brought him down for luck😅)

Dad was still gripping my hand as a mask was put over my face. The gas smelt and tasted of pear drops. I took their instructions of breathing in… And breathing out… In…. And out… In…. And out.

I started to feel dizzy. The room was spinning. My dad and the surgeons were talking to me but they sounded so distant and echoey. I also had ringing in my ears. I was feeling sleepy… And then suddenly… All was black.

Next thing I know I’m in intensive care….

Stay tuned for part 2☺️

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

Going back in time… Kinda

On Monday I had an outpatients appointment up at King’s. It was a normal, routine appointment that I now have annually.

This appointment was slightly different to previous years.. Mainly because I didn’t have my parents with me this time.

I didn’t go on my own though, I mean I could have done. And I did think about doing that. I know the route and routine of it all. I’m fine doing it all on my own. I’m 22 for God’s sake, and it’s not like I’ve not been there before (I’ve had like almost 7 years experience😂)

But I didn’t. I took my boyfriend with me this time. And I’m pleased I did, as even though I said I could do it on my own, it was nice to have some company ☺️

The journey was fine, we went on the train. We ended up getting to King’s just over an hour before my appointment as per. (I’ve always allowed extra time to travel there because of delays)

So we grabbed a quick drink and sat and chat for a bit. Then, because we still had a bit of time left I decided to go up to the ward I was on 6 or so years ago. The ward that played a massive part in my recovery. I wanted to see wether the staff who were there when I was there, were still there. I wanted to say hello. I knew it was unlikely that I would see a few staff, if anyone, but I wanted to try.

So we went up to the third floor (the floor in which my ward was on).. In the lift I felt all these memories flooding back. I remembered how many times I had used that exact lift, wether by walking, in a wheelchair or even in a bed.

The lift got to my floor, I walked out.. And forgot what way I needed to turn to get to the ward. I couldn’t remember wether it was right or left😂😂.

I quickly remembered though and turned left, making my way towards the ward. We buzzed in, used the hand gel they provided at the entrance and walked towards the front desk. The ladies at the desk I did not recognise and they did not know who I was. They asked “can I help you” and I explained that I used to be a patient in this ward and I’ve come to say hello.

They were lovely and chatted to me, whilst explaining that a lot of the staff who were around when I was there had moved on elsewhere. However there was one nurse there, who I hadn’t seen since probably 2014. The ladies called him and gestured over towards me. He looked at me a tad confused. But when I said my name he was like “omg Katie!!”😂 He asked me how I was, what I was doing now. He also pointed out the letter from the Queen I sent them (I’m not sure if I’ve mentioned that on here yet.. But I’ll probably reminise about it soon anyway!) After a bit of chatting, I had to go as it was getting closer to my appointment. I said my goodbyes and the nurse told me that he will mention that I came in to the others😁

Once I’d left the ward, I felt so happy. A little gutted that I hadn’t seen many people but I’m glad I got the chance to see one, and he will let the others know that I came in☺️

My appointment itself went okay. I didn’t see my actual consultant, but I saw her registrar. She was lovely.

I talked to her about the size and shape of my stomach and asked if I could have physio or something to help bring it in but she said that because of the way my stomach muscles are shaped and placed, physio wouldn’t do anything. I can try basic stomach exercises. But that’s it really. She also said that my stomach could increase in size in the future but there’s nothing I can really so about it. I’m okay with that at the moment, but obviously in the future if it start affecting me physically or mentally then I might have to consider other options if there are any.

She also suggested that I could be discharged if I wanted to be. As there’s nothing more that they can do for me and I am in a stable condition now. I said no. Mainly because I know, god forbid I was to relapse or just suddenly get extremely unwell, instead of going to the GP or A&E – who won’t know about my condition – I can call my consultants secretary up and get an appointment, or admitted to a ward at Kings ASAP. I’d rather have that back up if needed. After all, I am a complex case.

I guess it’s a good thing that I have the option to be discharged from the hospital after all these years as it shows I’m now stable and in a good place. Although, the other option is to stay put. Even if it means seeing my consultant once a year. I’d rather that than have trouble seeing someone who knows what they’re talking about in an emergency. Staying as a patient is one thing I am entitled to which I will accept. I think it’s the safer option. I’m happy where I am.

Moving on

I saw this quote shared on Facebook and my first thought was “that’s me!”.

I’ve had moments where I’ve thought why have I had to go through so much? Why was I born the way I was? Why have I had to go through numerous operations and treatments? Why me? So many “Whys”.

What have I done to deserve all the pain I’ve been though, both physically and mentally?

It may sound selfish and yes, there are people who have been through so much worse and are in a worser state than me. However that has been the way Ive felt in the past. Now that my “hospital life” is behind me (or so I think) I am able to live a normal life (as I’ve said many times before😂) Although, a normal life for me hasn’t all been easy. I’ve had moments where I compare my life now to how it used to be. And not in a “my life used to be bad now it’s good” kinda way. In a “why can’t my life go back to the way it used to be as that’s when I felt like ‘katie’ despite being in hospital” (see my ‘Finding Katie’ blog post).

But recently, I haven’t really felt that way. My past seems like a distant memory now. I’m focusing on now and my future. I’m not focusing on how I used to be and most importantly, I’m not wondering ‘why me? And’ Why was I given this life? ‘

Because, like this quote says; I was given this life because I am strong enough to live it. I’ve battled a hell of a lot, and it’s been hard at times. But I’ve ALWAYS got through it. 22 years and still fighting and going strong!

Against Doctors Orders

I’ve talked in the past about realising my limits and listening to my body.. etc.

But there are some things in my life which I am technically entitled to, yet I refuse to… acknowledge I guess.

When I say a few things.. I mainly mean.. Well.. One 😂

I found out I was entitled to this a few months back.

Basically a few months ago I went to the doctors for an appointment. He was a nice doctor and we chatted about the issue I originally made the appointment for. After a little while of talking, and I can’t remember how we got onto this, but he mentioned that I am actually entitled to a sick note that said that I was ‘unfit for work’. Due to the complication of my condition and the number of surgeries and treatment that I have had, I do have the right to not work and probably just live off benefits.

As soon as he mentioned the ‘unfit for work’ note I instantly said no. Why? Because why the fudge would I do that when my main goal is to be as “normal” as possible.

I explained that, yes I have a few limitations (mainly just heavy lifting), but I do want to work. I want to earn my own money. I like the idea of having money come into my account knowing that I’ve worked hard for it. I also don’t want to sit around on my butt all day doing nothing. I want to get out there, meet new people, learn new skills, build my stamina. I don’t want to let my condition define me and take control of my life.

Okay so.. I didn’t go that much into detail to the doctor but I did say how much I really wanted to work and in fact, I enjoy working and keeping busy. He was a bit shocked but he also said he was proud of me😂☺️

There are some things I am entitled to to, I suppose, make my life easier.. And some I will accept but there are some that I won’t. Only because I feel that it would limit me more. I’m a fighter. I’m someone who constantly tries. I get back up when I’ve been knocked down.

I have always said I will never let this condition win. And recently I have noticed that, from sticking by that statement, I am actually starting to live a “normal” life. I have a job, I’m socialising with friends, and recently I’ve got into a relationship.

Everything’s going for me at the moment… Years of fighting my condition and I feel that I’m actually winning now! 😁

CUE A CHEESY SMILE SELFIE:

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.

Confident Talker

Hello!

I’m sorry I haven’t posted sooner. I’ve been a bit all over the place recently. One minute I’m happy and confident with the way things are going and the next minute I’m sad and frustrated. I really don’t know how to describe it. It’s mad.

I’ve said all along, as my life has changed in recent years – to a more ‘normal’ way of living, I’ve had to try and adapt to all these changes and it’s been hard.

I’ve had a few set backs. Regarding work, dating, friends etc. All small things but to me… They’ve been quite a shock to the system I tell ya!

It’s nothing others have done by the way… Its just small things that most people will just shrug off and carry on. But I’m not used to having these sort of set backs… So i’m finding that I need longer to process what’s happened and then shrug it off.

I’m also struggling with the nice things that are happening. Which sounds odd I know.

For example, I recently went on a few dates with someone (yes.. I’m getting out there now!) and I spoke a bit but I couldn’t really say much as I just didn’t know what to say. I panicked and felt like the majority of the time I was with him my thoughts froze. I couldn’t form words. It was embarrassing. He was understanding about it though and tried so hard to ask me questions and encourage me to speak. But despite how much I tried, my mind kept going blank. He messaged me after the third date saying how he didn’t think we had much in common so there’s not really any point in meeting up again. The way I’ve worded that sounds like he was rude about it all – but he certainly wasn’t and was very nice about it. I understood and we’ve parted ways. Now maybe he was right. Maybe we didn’t have much in common. But there’s a part of me annoyed with myself because I feel that if I tried harder to talk and ask questions, and just be more confident in making conversation, then we may have found loads in common. He was really nice and made me laugh–which is a good sign in my eyes, and I really felt that we were similar in personalities.. Its just my anxiety and confidence affected me showing that.

My confidence when it comes to talking is similar in other situations with friends and family too. I just don’t know what to say or how to speak to them half the time. It’s ridiculous.

I really hope something eventually clicks and I start feeling comfortable and happy talking again soon. And I let my bubbly, silly personality shine through.