I think its back, and I am scared


I think, I have a gut feeling, that its back.

 I hope its not, I hope I am wrong, I hope I am being paranoid. All through this process whenever I was given options – for example “we are starting this medicine theres a 70% chance it will work, but if not we can up the dose” I needed the raised dose. “We probably can just do a scan, if not we can do a colonoscopy” I needed a colonscopy. “only as a last resort do people need an operation, its rare”…well guess who needed the op? I know. I know, its moaning and self -pitying to write like that, and for the first time in a long time I am sat here pouring out fears in a way that probably makes no sense; I am writing for the sake of spilling my feelings as opposed to trying to write a good post, necessarily. I am writing because I am scared and I need to blurt it out, not because I have an interesting thought I wanted to share.

 

My colonoscopy has been moved to Friday the 13th June… I know. Guess what that day is? it will mark exactly 6 months TO THE DAY that I ended up in an ambulance into A and E because of a crohns attack. I guess it must be fate? I hope that it is the neat end to a full circle, from a rapid deterioration to a recovery and confirmation of being all clear. I hope so. But I am worried its just a sign that I had my 6 months circle, lets begin again.

 

I am being selfish I know, it returning will not be the end of the world – worst things happen. I will get over it. I will. I just don’t want to have to get over it…I want to be able to be lazy in terms of not having to fight my body to function normally and eat what I want and do what I want. I want it to just work, to keep enjoying this freedom and happiness I have found since the operation. It wouldn’t be fair. But then, life isn’t fair….gulp..

 

Sorry, for the deterioration in post quality! Sorry for the rant, but thank you for being the outlet to the rant, it was needed

 

Hope your days are going better than mine

H x

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Friday the 13th….a really bad day


As if the doctors appointment, blood tests and then the MRI weren’t enough…Friday the 13th had to arrive. And I’m not superstitious, but maybe I should be. I had cramps starting about 4pm, and then had to retire to bed about 8pm, just felt so ill! Anyway later in the night I just woke up knowing something was wrong, and I wasn’t very well. I went through to my house mates room, and she was still up as it was only like 11pm, but then I got really ill and ended up throwing up. I took some buscopan afterwards and waited up with my friends for it to kick in and managed to get back to bed for about an hour; but then i woke up again to be sick – but this was all with intense crampings and pain. We had to all the ambulance in the end, and I was taken in about 3am. It was literally the most horrendous night og my life, I not only was in so much pain but retching constantly with no control over my body, I was shaking and panicking. My hands and feet started to get pins and needles because i was hyperventilating and was panicking very much, it was terrifying. The ambulance people, and my friend who was with me, were so brilliant  – they supported me as much as they could and managed to answer all the questions needed and set me on gas and air with another cannula in my arm with morphine. After a while I managed to get my breathing more under control, and calmed down a bit- although the cramping and lack of feeling in my hands and fee scared me quite a lot – and my heart was racing at something like 144 beats per minute! Anyway, we travelled to the hospital and I definitely calmed down towards the end, it seemed so unreal by this point. According to my friend I was having a good old giggle on the laughing gas by the end, about the possibility of seeing one of te boys we lived with last year who was a medic on his shift in the hospital – and about how ad my hair looked!

 

So we get to the hospital and begin the transfer onto a hospital guerney and the like, although there was no more gas and air because the hospital had no tubes to go between the oxygen tanks and my little mouth piece bit. We got wheeled through to the a and e bit where everyone had been in an ambulance (my first time in an ambulance did I mention?!) and then we waited. As this was all happening my mum was on her way to meet us, though we live quite far away so it took her like 2 hours to get to us. Anyway I ended up staying in the hospital for nearly 12 hours, I had blood tests, stomach x rays, heart profiling, blood pressure tests, and multiple oral and IV shots of morphine, IV fluids and paracetemols, among other stronger painkillers and anti-nausea too. It was all pretty scar, and my heart rate stayed too high throughout – in all honesty I didn’t want to be discharged, because I was under so many hospital pain killers and through the day every time they wore off the cramps and nausea came back – so i didn’t want to be discharged so dosed up incase it all happened gain as soon as we left. They said that we couldnt stay there more than 12 hours though, and although  I asked to be admitted and then transferred to the private hospital nearby, they refused and we were discharged. Mum had to help me walk to the car, I was getting dizzy and miserable so she helped me and we quickly packed up my university room and we got in the car and drove home. That was all yesterday and I am still feeling really groggy and pretty ill.

 

It was, all in all, terrifying. It showed me just how ill I really am. The feeling I had in the ambulance- the total inabiity to control my body and the huge amount of pain I was in, it was so hard to cope with and I dont think I can deal with it again. It was so scary, although it also showed me the support system I have around me. Also, i think everyone wants to move the operation to be sooner if possible, and just get it over with. I am so scared of having the operation, but i dont think I can be in that situation again, so if thats what needs o happen then thats what I will do…

 

So, Friday the 13t really was a jinxed day for me, ad one that robbed me of the confidence that i had- now I am scared to be on my on incase something similar happens and I am all alone. I know it sounds ridiculous and probably seems very over the top to anyone who wasnt there-  but it just was so scary! anyway spent the day on the sofa today with my mum looking after me, and everything in my body is sore and hurting, but im determined not to end up in the same situation; even if it means that have this operation

 

Hope everyone had a better week than me

 

H x

The bad day that started it all


“I know my texts are annoying you because you can’t do anything

to help me right now and I’m not texting to make you worry

or feel bad, but I worry my friends are going to get fed up with me

and since you are stuck with me its easier to text you. I am feeling so down

about this all, I’m so sick of being ill, I don’t remember the last day I felt

normal. I have a ball tonight and my stomach is so sore and bloated I’m

not sure I will even fit in my dress or go. I’m sat in the library frantically

trying to work because I’m behind on an assignment and its all I can do

not to cry and I don’t even know why. I’m so sad today and nothings going right

and I cant do my work and the medicine isn’t working and its making me

put on lots of weight and I’m still getting cramps from Friday

😦 x

This was, letter for letter, the rather miserable text I sent to my parents yesterday morning – its pretty self explanatory. I was having a bad day, and not a physically bad one but emotionally – having Crohn’s is like many diseases, half the battle I have found is the emotional and psychological battles that come along with it, and these are the ones I am only just realising I have to fight too.  It sounds very over dramatic, and I want to stress it was the accumulation of a bad week health wise which just all got on top of me – but it happens, honestly, it was a horrible day where I felt like why me? I don’t drink (much – I mean, I am a student 😉 ) I have never ever smoked, or done drugs, I am so sensible with my body, am reasonably healthy and in okay shape, so why should this all happen to me?

I have reached the point where I was so far into the treatment (in my eyes) that I had lost the initial enthusiasm about the medicines working, but not far enough to see an end point, or at least a point where it would stop interfering with my life in every aspect as it often does now. It was during the dark depths of yesterday afternoon that I realised, I cant be alone. What I needed is someone or some people to talk to who understood what I meant, I love my friends but I don’t want them to get sick of my moaning and groaning, especially when they don’t really understand the types of pains and emotional stresses I am under – I try to act as normal and shield them from stuff, so that they don’t feel the need to treat me differently. Then searching online I found some tips and advice, and after a day of feeling awful today I am on the up again.

This blog is a way for me to share with you  my journeys and ups and downs, and hopefully to contact others on a similar journey. As well as anything else, this blog is for others to read and to understand more about the honest implications of having, and living with, Crohns.

H x