My Experience of Stomach Surgery (part 4)..

After a few days of being in intensive care and special care i was moved back to the normal ward.

Princess Elizabeth Ward is what it was called. It was a second home to me back then – which isn’t the most ideal I know😂 but despite the circumstances, I felt happy, safe and welcomed there. The cleaners, the nurses, the doctors, everyone on that ward were amazing.

Anyway, when I got on to PE ward, I was still a little dazed and sore from the surgery but I was getting there. I didn’t feel any pain for the first couple of days but that’s because I had an epidural. Before my surgery I used to think only pregnant women had epidurals and didn’t quite know what it was😂

However prior to surgery I was given an explanation as to what an epidural was. In my own words, an epidural is basically a form of pain relief. It’s a tube that runs down the spine that injects a form of pain relief into your body. It basically numbs most of the body and reduces the pain that you could be feeling massively.

I didn’t quite realise how effective an epidural could be until I had one.

I had one put in during my surgery and had it kept in all the way until I got to PE ward and was properly starting to recover and get back to normal.

When it first came out, I still felt no pain whatsoever. I had no feeling at all within my body actually. Within a day or two of it being taken out though…. I started to realise how powerful that drug was.

The pain was horrendous. I wouldn’t wish it upon anyone. I have the odd pains and aches now but I have never had pain like that. However it’s not surprising, considering I had just had major surgery where my stomach had been sliced open. (sorry for the graphic image there😬😂)

By this point, because I started getting feeling all over my body again, I also had my catheter taken out (a thing that lets you go loo without getting out of bed or even moving – sorry again😬😂).

I then started to have physio and would start by working on slowly sitting up and sitting on the edge of the bed. It felt like a work out!

Thinking about it, I find it fascinating to think that once, even sitting up in bed exhausted me. Now, I still get tired and exhausted probably a bit easier than a “normal” person but I can do a lot more!

After days, maybe a week and a bit, I was walking around the ward with my triage (they called me lady penelope at the hospital as for a short while I had to have people with me when I went for a wander round the ward or hospital – my dad and a nurse or two, as well as the machines I was connected to!😂)

I made such good progress in such a short amount of time (I think it was just because I was soo determined to get back to normality that I really pushed myself!). After about 2 weeks of being an inpatient, I was sent home. Everyone was so impressed with my progress that they felt that I could go home. I remember asking my consultant when I could go back to school and he replied “give it at least a week”. I was gutted, I wanted to go back the next day! 😂😂

I was so happy to get home, recover and have a “normal” life. Me and dad surprised my mum and brother by turning up at the house without telling them I was coming home. It was so nice to get into my own bed!

Unfortunately though, it wasnt long before myself and my family realised that maybe all was not as it seems and I probably came home sooner than I was supposed to..

My Experience of Stomach Surgery (part 3)

Following on from part 2…

So after a couple of days in intensive care I was moved to Special Care.

This is a step down from intensive care, and only one step away from being on a normal ward.

I don’t particularly remember much from special care.. Much like intensive care.

I vaguely remember being in a room to my self, as well as on a ward during my time in that unit.

I remember that I had a doctor come into my room/bay everyday asking me what colour the walls were.

This was because I was still on a lot of medication to manage pain and stop me from moving too much as the scars were still very raw. The drugs were slowly wearing off though, and they knew this from me telling them what colour the walls were. The less blue/green (I think) the were and the more normal my vision was becoming, the closer I was to the drugs wearing off completely.

During this time, I also remember a story that I think I’ve told many times before – the time I hallucination I had of my dad being a women! That was so strange! 😂

I had many odd hallucinations during this time. I saw strange things and was pretty disoriented. I didn’t feel any pain and felt quite light and happy but I still wasn’t myself. Apparently I sweared at my dad and told him to do one a few times. Those who know me know that is unlike me.

I also once thought my dad was having an affair with a nurse! I used to growl and give this nurse dirty looks whenever she came to check up on me – obviously there was no affair! 😂😂

I believe I was only here for a few days before being moved to a normal ward… When things started to really move and I was closer to normality!

I can do this… I need to

That’s what I keep telling myself anyway.

I’m currently on the train, going up to Kings College Hospital – a hospital I know pretty well🙈😂

I’m on my way to an emergency appointment.

Since I’ve been an adult and have moved to adult care, I have never had to have an emergency appointment with my consultant. Which is a good thing. It just shows I’ve been well enough and able to look after myself without the need of medical intervention.

However recently, well the last few months actually, I’ve been noticing a few things.

A few people close to me know that I am pretty much always in some sort of pain or discomfort. I also suffer with a lot of sickness. But for the last few years they have been manageable. I’ve been able to cope most of the time.

Recently though, I’ve been struggling. Ive been trying to not admit it. I’ve been trying to push through and keep going as I always have. But it’s becoming too much now.

The pain. The discomfort. The sickness. It’s all too frequent and becoming quite powerful. It’s starting to interfere with my “normal” life despite my best efforts to hide it. People around me are noticing changes in me too, particularly my behaviour. It’s becoming quite clear that I am struggling.

Last week I gave in and phoned up my consultants secretary. I asked if I could see my consultant ASAP.

Luckily there was availability today.

So currently, I am on my way.

I’m going to tell her everything and not sugar coat things saying “I’m not too bad” etc. As I have a habit of doing…

I am pretty certain she’s going to recommend some tests.

Although, I’ll be happy something is being done about this, I am also nervous as these tests could also intefere with my “normal” life.

I am also worried that, if they found the problem that is causing me this grief, the treatment that they may be able to offer me could send me backwards.

It probably won’t but I’m so scared of going backwards with my health. I’ve worked so hard to get to where I am now both physically and mentally! What if this pushes me backwards? What if I become more ill? What if I end up being admitted into hospital on a long-term basis again? What if I end up driving those I love away from me due to my poor health?

I’m so comfortable with living a normal life now. I don’t want to disrupt it… But like a lot of people have said to me…. I need to listen to my body. And I need to put my health first!

K x

Should I or shouldn’t I? That is the question.

I don’t know what to do.

I’m in a good place at the moment. Despite having a few more pains and discomfort than usual (which I have arranged an appointment with my consultant soon for), I am happy. I’m doing well at work. I’ve pretty much finished my Business Admin course. I’m going out and having fun with my friends and boyfriend. Life is probably better than it ever has been right now.

But I’ve been thinking recently. Well… wondering. Would now be the right time to have a little play around with my medicines/tube feed. Maybe reduce the tablets I take and/or try having more nights off my tube feed.

I’m in a stronger, healthier state now. What if I was to, say, stop using my pump for 4/5 days or even a whole week… What would happen? Will it make me eat more? Probably. But will it make me get ill? Maybe. Is it a risk I’m willing to take? I don’t know.

I will probably talk to my consultant before I do anything but I feel like maybe I should give having a whole week or something off my tube feed a go? Normally I have 1, 2 nights off maximum. I’ve tried a week off before, but it was a few years ago. It didn’t end well. My weight dropped dramatically and I got sick.

I’m at a better weight now. And like I’ve said, I’m much healthier. So maybe a week off the pump wouldn’t do me as much harm?

The important factors I’ve got to take into consideration are weight loss and dehrdration. These two factors could be triggered very quickly from me not eating or drinking enough to keep me going throughout the day. However by not having the feed overnight, maybe I will start feeling like I need to eat and drink more throughout the day, helping me to get the right balance and avoid dehydrating and/or loosing weight.

With the medication side of things, I don’t take a lot of tablets but I still think it would be nice to wean myself off them. But that, again, is something I will talk to my consultant about before doing anything.

I feel like I’m ready to start taking risks with my feed and medication now. But I’ve got to do it carefully and with consideration. It could go one way or another. I guess I won’t know unless I try, will I?

I’m both excited and anxious about doing this. But also I’m still not sure whether to just go ahead and do it.

I know I know my own body and its all my decision, but what do you, my viewers, think?

Should I give it a go?

Katie’s Condition

That’s what the doctors used to call it…

I’ve probably talked about this or similar in the past but I just feel like talking about it again because of an incident that occurred today.

So I went to the doctors to have my flu jab. I have had a flu jab every year for the last few years. Recently, my dad has started having it to because he is practically my carer (although I don’t like the term ‘carer’ in my case as I like to think I’m quite independent when it comes to my care.)

Anyway so.. This happened last year, and I believe it happened the year before that too. My dad received a letter from our doctors surgery inviting him to come down to have his yearly flu jab. I never received a letter. I didn’t last year, or the year before. But I still turn up as I know I’m entitled to it. I’m what they call “high risk” due to my condition and circumstances.

Anyway, today I turned up. I thought that the receptionist would say something along the lines of “you’re not on the list” when I went to book in as this has happened before.

However this time round she looked at her computer and asked me to take a seat. I thought “Brilliant! Finally on the list! 😂”

So I waited for a bit. Then I got called in by the nurse. I walked into to the room with the nurse, noticing that she was giving me slightly curious/weird looks. I sat down in the chair provided right in front of her chair, with the computer sitting next to her.

She then continues looking at me in a slightly odd way before saying “Katie, can you tell me why you should have the flu jab. You’re not high risk or anything. Could you explain your condition?”.

Wow. Part of me felt like saying “just take a look at my notes”. Surely by looking at what I’ve been through is proof enough that I’m entitled to the flu jab.

I didn’t want to seem rude though so I went to explain my condition before hesitating for a few seconds whilst I thought “wait what is my condition?”.

There is no name for what I’ve got in general. So I gave a very brief outline of my life. I was born with my organs on the outside of my body (there is a name for that I know – exomphalos) , I’ve had complications throughout my life resulting in me having major stomach surgery, I now have a tube in my stomach etc etc.

That was luckily enough for her to agree I should have it and proceeded in giving me the vaccine.

I then walked out and went on about my day. Since that moment this morning though, I’ve been thinking. I feel like I’ve explained my story to so many people so many times. (I’m getting a little bit tired of it now not going to lie – maybe I should just show people my stomach when asked what my condition is…. Or better yet carry a sign with me at all times giving certain important factors of my life/condition. It will save a lot of time 😂)

When people ask me what my condition is, I can’t just give them a one word, simple answer like someone who has asthma, or epilepsy for example. Conditions people know. I have to tell my life story. Or give the briefs of it anyway.

Well it’s either that or say the actual – made up – name of it… Katie’s Condition. Like the doctors at Kings used to call it.

Apparently there is no one like me. Well no one who has similar symptoms, consequences and surgeries all together. I find this a little annoying because I can’t give anyone straight answers and not everyone has time to sit and listen to me explaining my life story.

However I guess it makes me kind of unique. One of a kind you might say. As far as I know there’s no one else out there with “Katie’s condition” and maybe I should be kind of proud of that.

My Experience of Stomach Surgery (Part 2)

Following on from part 1…

So I woke up in intensive care. I only remember bits of being in intensive care as every now and then I’d just randomly fall asleep because of all the drugs they were giving me.

I had my own nurse in the unit, who stayed by my side at all times. My dad was given a room near by so if I needed him then the nurse could call to his room and he’d be down in 5 minutes.

I remember feeling frustrated and upset that I couldn’t move or communicate despite being able to hear and see everything. I could basically only communicate with people by blinking and making sounds.

I tried moving even just my fingers, but I physically couldn’t. I remember trying so hard to move, I felt like I used all the energy that I had to try but It was impossible. It was surreal and so scary. I felt like I was locked inside my own body.

I had a tube going down my throat, into my airways to breathe. I was on life support. I drifted in and out of sleep all the time I was there.

Nurses and my family would try to keep me entertained and communicated with me the best they could. Apparently, according to my dad, I’d get the odd foot massage which I loved! 😂

Because I couldn’t communicate verbally, others had to understand what I was trying to say through sounds, and eventually I gained use of one of my hands so I was able to – slightly messily😂- write down what I wanted to say. (I’ve been hunting high and low for the piece of paper which I kept from that time.. Showing what I wrote – or scribbled- on but I can’t find it😩)

For some reason I had an obsession with asking what the time and day was? It got to the point where I didn’t even have to say anything… I’d just look at Dad and he’d be like “it’s half 3 and it’s Saturday” or something hahaha

I don’t have many memories of intensive care.. As I said I was zoning in and out a lot. I remember the feeling of the tube down my throat though. It didn’t hurt nor was it that uncomfortable… Just… Odd. Like every time I swallowed, I just felt a large bit of plastic in my throat. Weird.

Anyway, I’m going to leave it there and keep you guys hanging on… The next chapter of this blog post will involve the next stage… Special care.

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☺️