I’ve got to do this

Yesterday I said in my post that I was on my way to King’s in London.

The results of this appointment are;

I have to have a few tests done to see why my stomach is growing larger and why I’ve been getting more discomfort, pain and sickness.

She THINKS it may be caused by adhesions (organs starting to twist and stick together). I have been told that due to my history, I am at risk of getting adhesions.

She had a feel of my stomach and listened to what I said. She said it’s likely to be that, but she wants to do some tests to make sure and possibly rule out what else it could be. (it could also be an infection, in which case I’ll just need a dose of antibiotics – I hope this is the case!!)

If it turns out it is adhesions… Then she said I will have to have surgery. And due to the complexity of my case, it will probably be major surgery.

I am hoping it doesn’t come to that.

For now though, I am just going to stay calm (I had my little rant/outburst/worry to a few people close to me- thank you for listening and trying to keep me calm guys😂😘)

I will go for these tests like the trooper I know I am. Heck, I’ve been through much worse.

If the outcome is surgery…. Well I’ll just have to do what I always have done… Smile, tell bad jokes and carry on. And be thankful as it could be sooo much worse.

K 😊 x

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

Feeling guilty

As I’ve mentioned many times before, I’m in a good place right now (despite getting over a stomach bug today)

However, as well as getting over the bug, I’m also having a low day. I feel guilty for feeling low as I know everything is actually going great in my life at the moment.

I have days like this. I even feel guilty for having to take today off work. I had to, because I’m not well enough physically to be in, but still. I feel like I am letting others down – particularly my colleagues. But I had to listen to my body.

The good news is I’m feeling well enough to be able to go in tomorrow!

This lowness feeling used to happen a lot. Its less frequent now as I’m more happy in general. However there are occasional days where I feel like I can’t cope. Dark feelings and thoughts take over and I don’t know how to get rid of them. I’m scared to tell someone close to me just in case I scare them off. I don’t want them thinking I’m weak or miserable because that is so not me.

I know I’ve got a lot of support around me. I’ve got so many people to talk to. I just don’t know who to go to, and how to let them know what I’m thinking/feeling.

It’s a toughie. The main thing that’s getting me through this low spell is knowing that it won’t last as long as it used to and there will be light at the end of the tunnel! I’m hoping to start feeling brighter again in the next few days😊

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.

I’m living a life and it’s only just clicked

As you can see from my previous posts, I had a little bit of a downer. But I’ve learnt that it’s okay to have down moments. It’s okay to feel sad from time to time. It’s okay to not be okay.

Anyway… I’m feeling pretty positive now. I’ve been chilling this evening, watching TV and listening to music as per. I’ve also been thinking.

Lately, I’ve been doing a lot. I’ve achieved things that I doubted I would. I’ve taken risks that I was too scared to take previously.

And I’ve loved every minute.

For example, last week I went to London with my boyfriend to see Biffy Clyro. They were really good! We had standing tickets. Meaning we were close to the stage, but it meant we were standing at all times.

On the days, weeks even, leading up to this day I was kinda anxious. I was worried about the journey. We went by train. I have been on a train before but only to places I know well. Don’t get me wrong, I trusted my boyfriend and felt safe with him. But the worry was still there. It was kind of out of my comfort zone. I was also worried about standing for so long. I was worried my body wouldn’t take it. Whenever I’ve been to a concert, I’ve always had seated tickets so I can stand and sit as I please. But this time I took the risk.

And you know what….. I did it. I felt a bit tired and my legs were kinda achey but overall I didn’t feel as bad as I thought I would. And the journey there and back wasn’t so bad. It was an amazing experience all in all!

This weekend I’m planning on going to visit some friends up in London. It will be the first time I go up to London on the train on my own. However… I’m not actually that nervous. I’m excited about the whole thing!

Before the beginning of this year, I was certain that 2015 was the best year of my life to date! That year I had started to properly recover and there were loads of parties and events I attended. It was a fun year!

However now we’re coming to the end of 2019….. I’ve changed my mind.

I know we’ve still got a couple of months left of this year but honestly, so far this year – I have had the time of my life!!

I feel like I’m actually living a life. I’m being a 22 year old! And it’s all thanks to the people around me, new and not, who have released me from being “wrapped in cotton wool” and have allowed to live my life. Go out, meet new people, explore new places, learn new things, have fun!

I know for some close to me, it’s been hard letting me go. But what they, and i, have to learn is that physically I’m strong now. I have the odd day where I may feel weaker than usual, but generally I’m a pretty strong person! I’m able to go out, have a few drinks with friends, do driving lessons (probably not straight after a drinking session with friends though😂), go to concerts, stay up late and just enjoy life.

I’m happy thanks to those who have set me free and let me take risks. I don’t need to be protected anymore.

I am living my best life and it is brilliant! 😁

A message to those close to me❤️

My last post was a bit negative… I apologise for that. I seemed to have upset a few close to me by posting that. They seem to feel they are a part of making me feel sad and low.

Let me tell you now, none of you. Not one of my family members, friends etc have contributed to the way I feel. I can’t help the way I feel sometimes. I can’t control my moods. Most of the time I dont even know why I feel the way I do.

I know for a fact though that I’ve got super supportive friends, family and boyfriend. Every one of you, if you’re reading this, are stars!

How you’ve managed to put up with me I don’t know😂.

You’ve all been supportive and amazing and I couldnt ask for better people to be close to.

I love you all and I’m sorry for causing any worry or concern.

K x

Highs and Lows

I’ve been struggling recently.

I really don’t get it. I feel like I’ve been on such a high for so long. Everything seems to be working out. Any knock backs I’m getting, I get straight back up. I’ve been practically constantly feeling happy and content with life.

Recently though, I feel like I’ve been putting it on. Like I’ve been forcing myself to smile and be happy.

It’s a strange feeling. It’s like I want to be happy, I know I have all the reasons in the world to be happy. I’m finally leading a normal life – this is a big contributer to that!

Why, recently, do I feel like I’m pretending all the time?

Is it because its all getting too much?

Am I tired of all the trying and pushing myself I’ve done the past few years?

Am I struggling with normal/everyday tasks because I don’t feel like I deserve to live a normal life?

I don’t know. That’s my answer to all them questions. I don’t know.

Here I am admitting to everyone who I’ve lied to and said “I’m okay”.. I’m not. I’m tired. I’m struggling.

But I’m still going to try. The more I try the more real it seems. Trying is all I have done and can do❤️

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☺️