The Operation…with a capital O


ImageI don’t even know where to begin… I think I will try to keep it was brief as possible but heads up for the longest post so far me thinks!

Before…. I was already eating very little, but after my appointment with him on Tuesday confirming that I would be having the operation I was on soups, jellies, ice creams only. For Thursday I was on even more restricted, clear liquids only kind of thing, with preparation drinks to drink and all that jazz- not fun although not too invasive.

Friday 20th  – went to Oxford with my mum to the hospital where I was having the operation, we decided to go here because I am lucky enough to have some private health care until I am 21 through my Dad’s work, so we went to a recommended specialist for the operation. We arrived at 7.30 and I was kind of surprisingly calm. it was just going to happen. We had to go to the day operation ward because my private room (I know – how lucky!) wasn’t ready until after the operation. We sat in a little curtained off room in a main ward and waited, got weighed and into my gown and pressure stocking and all the other fun – like having named bracelets put on both wrists and all the other admin, such as talks with the nurse and surgeon and signing of some paperwork. 9.30 was the D time, and in the hour before I could feel my heart pumping more and more, panicking, crying, a bit of all the emotional works went on here! A lot of burying my head into my mum and trying to ignore the clock that was staring back at me and a repeating “15 minutes mum, they are coming to take me in 15 minutes2 “13 minutes mum they are coming in 13 minutes”….as I am sure you can all imagine. 9.30 came and went, as did 9.45, and 10…and we asked the nurse what was going on. Apparently the anaesthetist never turned up…the surgeon came at 10.15 and said it would happen within the next hour. Needless to say the adrenaline rush had passed but I was on tenterhooks, totally unable to relax, it was pretty horrendous. At half 11, they came for my operation, and off I went.

I woke up in recovery and remember not wanting the nurse to leave my side, and very much liking the morphine button that was in my hand 🙂 I got wheeled back to my room and my mum was waiting for me.  Friday and the Saturday (when my dad came in to visit) was a bit of a morphine haze. Over night I was in quite a lot of pain so they doubled the amount of morphine I got given each time I pressed the button – and I was in a very big haze! I tried to text, or read the guide on the TV to pick channels and there was no way that I could, everything was in double and I felt really sick. I had two cannulas in my left hand, with antibiotics and painkillers in, as well as a catheter.

 

I don’t really know the best way to write about it, but I basically needed two nurses to help me move in and out of bed into my chair, and to help me wash and get changed etc. I honestly was totally incompetent in doing anything – and I hated the feeling; although at the same time I wasn’t really aware enough of it to care…I used to be able to get into the chair with the help of the nurses, but I needed to buzz them for literally everything – if I dropped something, to help move my pillows about, everything. I managed to get out of bed with the nurses help on the Saturday, and sit in the chair for a few hours. I spent so much time asleep or dozing, and a lot of it confused by the medicine! The next big achievement was shuffling a few steps to the window to look out, but that exhausted me. I managed to also walk outside my room a few days later, again with the support of two nurses, although only a few steps – and later that day mum wheeled me around the ward so I could see better where I was staying.

 

My parents alternated visiting every day, and bless them they stayed with me for as much of the day as they could, which made all the difference in the world to me. I struggled in the nights with feeling sick, especially after they took the IV fluids away and allowed me to begin to have sips of water. Until then I wasn’t drinkning anything, just using a sponge dipped in water to suck on and keep my mouth from drying out, because swallowing was making me feel really sick. Its weird looking back just how helpless I became. Also, shockingly I discovered I was going to be tummy-button-less! I never really though it through before…the surgery was keyhole so I have two small holes that were used for instruments- although I think these will almost completely clear away, and then the main incision was through my stomach so when they glued it together it kind of glued up my tummy button, which is just so weird!

 

It was easy to get sad in the hospital, although the staff were incredible and my family were the best support I could ever have asked for, but you do still feel a bit lonely sometimes; when your awake at 4am and just cant get comfy or have a million thoughts running through your head. The reality of it never really hit me until I was lying in that bed pretty much helpless, I never thought how much it would affect me. I feel like I am not an eloquent enough writer to truly get across the depth and bredth of the experiences, I hope that it is giving an insight into what it was like, and that those of you who have experienced something similar can understand.

 

I had to spend Christmas in hospital, not fun, although I am going to write another post about that, and my slow recovery – I don’t want to overwhelm everyone with a giant post, so I am trying to split it up. This experience has been terrifying for me, truly so. It is the least in control I can ever remember being, and I hated it. It has meant that I realise how supportive and incredible my family truly are, but I am just scared about how long the recovery will truly be. I never quite realised how ill I was, until I was lying in that hospital bed. Scary, but I am out the other side and I hope things will be looking up.

 

 H x

Too Tired…just got home


Too Tired...just got home

Just got home from hospital…too tired for a proper post

wanted to just check in and update everyone, all went as well as possible, but feeling groggy still! will write a proper post with photos and all the gory details tomorrow for you to enjoy, but until then – off to bed! 😉

H x

A week from Hell…and it goes on


Friday before Christmas? Means family, food and festivities right?
Not for me. I am going in for 7.30 in the morning for my operation. Terrified? YES. more than I thought possible

On Tuesday I had my meeting with my consultant who decided that the best thing to do was to have the operation ASAP, and although I was given the choice between this week and immediately after Christmas I was persuaded to go ahead this week – because I didn’t want it hanging over me for Christmas, and that I would be eating only a liquid diet anyway, so that would ruin a lot of the Christmas joy! But, it means that theres a high chance im going to be in over Christmas. in a hospital, in pain, on medicine, etc. I am beyond gutted, and although I am going to do everything I am physically able to, to come out to be with my family – I have to accept theres a good chance it wont happen, and that is so miserable for me, so miserable. Christmas is my favourite time of the year, but no, Crohns took that too! My family and friends have been as supportive as they possibly could be, and even if I am in hospital I wont spend all of Christmas day alone, but it doesn’t make the prospect much less appealing.

So, Wednesday I went back to Oxford (where I am going to have the surgery) and had all my pre-operation assessments. The nurses were amazing in giving me so much information, and taking the time to look after me etc, I saw the nurse a doctor a stoma nurse and more – it was really helpful and reassuring that they would take that time. The amount of information was brilliant, however it was also scary ; it meant that I knew everything that was happening, all of the terrifying tubes and instruments im going to be strung up to…and the potential of having a stoma when I wake up. It would only be temporary, for about 3 months, but that is probably my biggest fear right now.

I am sat here typing this feeling pretty much normal, aside from the growing hunger! I am waiting to go in for an operation at 9.30 tomorrow morning, and although I am trying to stay calm and ignore it the panic is slowly growing…EUGHHH. I haven’t eaten properly since the trip to A and E on Friday, had about half a bread roll a day, if that. Anyway since tueday he said liquid diet only, that’s just soup. BORING. Aside from that my appetite has now refurned fully, I am starvinggg! But as of today I cant eat anything and can only drink clear liquids, and all I have had today is 3 small jellies. SO HUNGRY.

I am trying to remain calm and to accept that it is going to happen, whether I spend the time crying and moaning and shaking, or if I sit here calmly and blog. So I am kind of going for a mixture, trying to ignore it and stay calm, whist shaking and panicking alongside that! I have had continuous phone calls and support from my family, and it makes me grateful. It has all happened so fast, too fast, never enough to get my head around.

I will keep you up to date as I can, I hope the rest of you have a brilliant Christmas, and I hope to write again soon. Keep Smiling, and I hope to see you all on the other side!

H x

want to get off this rollercoaster…


sometimes it all just moves a bit fast

after talking to my specialist today he wants the operation moved forwards as quickly as possible – I understand why, I don’t want to go through that uncontrollable pain and end up in A and E again; but neither do I want this operation, although I know it is the lesser of two evils. I am just terrified, and as of now I have an appointment tomorrow in Oxford to choose the date and details of the surgery, which I am probably going to have before I go back to university. It is not only so scary, but it is all the after effects and the recovery and the effects on my life and exams and friends and everything…

 

a bit of a rambling hopeless post here, but I really needed it off my chest. I have been trying to keep my head up high and stay focussed on the positives, but its not easy when everything comes at once and its overwhelming and scary. sometimes, more than others, I hate this disease and everything it brings with it

H x

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

MRI Update


Sorry its been a few days since I last wrote, am trying to write short but regular posts so I don’t end up boring everyone to death, but I have had the most crazy Crohn’s week, so havent been able to write at all 😦

 

The first thing to update you on is my MRI – bleughhh how grim are they? well, not as bad as many other procedures  – but not much fun either! So luckily my friend came with me, we turned up for the MRI and she was merrily eating the free mince pies tat were on offer at the hospital! I drank the contrast juice, which this time actually tasted really good just like orange juice 🙂 After this we went through and I got changed into my gown and went through to get the Cannula put in – I hate needles! They let my friend come in with me and hold my hand whilst they put it in, she was very supportive! Then we sat back in the waiting room and I finished the contrast, or at least most of it, and then went to the room and lay in the machine. It was really different to the one I had last time, it was truly a polo machine where I lay on my back and then had an injection and a blanket put over me and slid into the MRI machine – little bit claustrophobic! Anyway endured the 30 minutes in the machine with the “breathe all the way in, and out, and in and hod your breath now please” until it was all finally done and I could leave with a hot chocolate to sit with my friend again 🙂 Felt pretty dizzy but okay, so they took out the cannula and I got changed back again, although I felt decidedly groggy and weird for the rest of the day :L

 

Thougt I would let you know about the week in two smaller posts, n attempt to not bore everyone into not reading! I was wondering what experiences you guys had with operations and the preperations?

 

H x

Cheesy Inspirational Post


Crohns makes me sad, mad, angry, hurt, lonely, cry, isolated, scared..and much more
But it also made me grow as a person, I understand others pain, I am more organised, more efficient, I appreciate the days in my life when I can walk to town and get lunch with my friends, I know and love my friends and family more for their help, I am a stronger person than I thought.

Soppy? Yes. But true. Sometimes we need to recognise the good, and congratule ourselves. So here it is.. I am proud of myself and of how I handle this disease. Sometimes it gets the better of me, but I will make sure that happens less and less, I will beat this disease into remission.

Tuesday the day of Doom…


So this Tuesday I had a bit of a crazy schedule, a day which perfectly shows how I have to try to fit Crohn’s into my everyday life, and how manic it can all get.

Firstly, I had a 9-10am lecture ( the last one of this module before Christmas), and then a 10.14 blood test to monitor my levels since I am now on the Azathriaprine. Sounds simple enough, since the lectures are meant to finish at 9.45, and then I had time to collect my friend from home and we could walk up to campus where I get the bloods done at the uni doctors.  But, sods law, the one day I was in a rush afterwards they decide to overrun – typical! We were having the second half of the lecture on gunpowder and why it is a wonderful object, and our lecturer (also a chemist) decides to just whip up a sample of gunpowder to show us and had bought a few fireworks so off we duly toddled to watch the fiery explosions outside, plenty fun enough but not what I needed when in a rush! Luckily I rang my doctors and managed to get the appointment moved to half past, so made it just in time!

 

For some reason it hurt more this week, not sure if my arm is just getting fed up of being poked every Tuesday, or if the nurse was just having a bad day, but there we go. Then next on the agenda was a brisk walk home to collect my osteology module folder, then a run to the labs for a lecture 11-12.30 and then a test worth 10% of the module. stress! After that had then do another jog home again to be home and eat before my mum and her new boyfriend got here – first time meeting him! They had come down because I had another hospital appointment at 4.15, with the specialist and she wanted to chat to him since the whole operation idea became more of a reality.

Anyway, mum and boyfriend arrive, we head off to pick up my friend from campus and all went to town – my friend and I were heading to a masquerade ball in the evening and needed masks. We found them in town, and had a wander round and then headed to the hospital where my friend and mums boyfriend waited outside whilst mum and I went in. I explained to him the pain I have been in and how it is really affecting my life, and he basically said lets get this operation done asap – I think I stopped breathing for a minute! *PANIC*  Anyway we discussed the realities of the surgery, and then he explained I would need another MRI, and colonoscopy before the surgery could be arranged, as well as having to sort it all out with my insurance company. Crohns has really made me mature as a person, made me grow up and take responsibility and learn to be more organised; I feel able to deal with doctors on an equal footing, and now know I am capable of handing decision making and organisation. Reading that back it sounds a bit like  I am writing some sort of CV for myself, but its the truth – I really feel it has made my better as a person – need to keep looking at the positives!

He managed to book me in for an MRI the next day, and then a colonoscopy after Christmas. ARGHH I knew that I would need to do all these things again, I know this operation is happening buts its still so scary. Really, its not a small thing, not for me at least. I just needed to face reality and get on with it,  though I have a tendancy to ignore it and pretend it isn’t happening until it actually does.  After all that drama, we went out for dinner and then the ball -which was soo lovely!

 

Apologies that the post is so long,  I just was wondering what you guys do when things are scary or tough, any coping mechanisms would be appreciated! Although things are scary, but I am moving forward and hopefully upwards, and getting on with the next few weeks

 

H x

 

 

 

And so she shall go to the ball!


Morning all,

Since my last post a few days ago I have been feeling decidedly better, both emotionally and physically; am feeling much more human and ready to face the world, and my Crohn’s head on.  After my last post, a bit of a cry and a nap I decided I had to try to go the Christmas Ball that my university was hosting, since my friends and I had all bought tickets and had all been looking forward to it, I didn’t want to end up staying behind on my own and feeling miserable or making my friends feel like they had to stay behind to look after me and then ruin their night too…so anyway, I had to wear a dress with elastic high up by my bra strap with a floaty-er bottom to stop it pressing on my tummy and hurting, but off we went! I had made sure that I knew were the nearest taxi rank was, in case I just had to abort the mission and head home, but when we got there laughing with my friends, being all dressed up with the music playing really helped (as did the drinks!) and I felt a lot happier and glad that I had made the effort to go 🙂

 

Since then I have been rushing about work wise trying to balance several different assignments that I have due, and catch up with one that I got behind on due to having a flare-up last week. After talking to my consultant he told me I should be telling the university about my illness, especially now it seems to be affecting me more – to see if there was any support available and to let them know about the potential operation. Anyway, I duly fired off an email to my tutor (who appears to have no office hours at the moment -.-) and then also emailed the lecturer running my module that had an assignment due yesterday, because, as I explained, I felt that due to my illness taking up so much of my time this last week I would be unable to complete the task to the standard I would like, and I asked for another 24 hours just for proof reading and the like. Needless to say neither of them have replied to me, even now, so I was left scurrying around stressed trying to get the essay in, ad thankfully after an extended afternoon sesh in the library I managed to. My dad said that if I cant get hold of my tutor soon I should just loiter with intent around the archaeology building – but I decided to give him until next week, if no news by then he can expect to see a grumpy looking student hanging outside his office until he opens the door!!

 

I got some more blood test results yesterday, I am having them weekly, which said that my haemoglobin and white cell count are decreasing a bit, so to talk to the doctor- I have an appointment with my GP tomorrow to get a repeat prescription anyway, so that’s just one more thing on my “Crohns list” that I have to sort out. That’s part of this that I am only just coming to terms with, the emotional and physical sides to this disease yes – but personally it just adds a lot of work onto my life. It includes going to blood tests, getting results, ringing consultants, double checking with GPs, making new appointments with specialists, getting repeat prescriptions, talking to my tutors etc etc. ..its all extra hassle that when you are feeling down feels like a never ending, constantly growing list! Anyway, at the moment I am pleased to report feeling better than I have for the past few days, and merrily ploughing on with some work due after Christmas to try to keep ahead of myself incase I have another bad few days soon.

 

Bring on the Christmas meals (in small, manageable portions 😉  ) the tree and the family! Looking forward to the next few weeks, and hope you all have something nice planned too  🙂

 

H x