Happy 4 years, little scar


OKAY, I KNOW I ALREADY POSTED TODAY.

But, I just realised, it was 4 years ago today, exactly, that I had my operation for Crohns!

How life has changed…goodness! And also just over 4 years that I have been blogging here, crazy to be able to look back over all my posts and see just how my life has progressed.  I went back and read my posts from every December over the past 4 years, just to see how different my life has become, and it is CRAZY.

So, in memory of my scar. And THAT day. Here are the things that stick in my mind from that time:

I remember going there, and waiting in my gown and stocking thinsg, and mum taking a photo and I looked about 12 – the combination of lack of makeup, being ill, and being terrified. The Anaesthetist was delayed, so we ended up waiting so long to go in, that my adrenaline kept fading away, then someone would walk past and it would go again. I remember I had just got my ears pierced and was so worried about taking the earrings out for the surgery (had to) and that they would heal over. I said to my mum when she saw me wheeled back she HAD to a) check if I had a stoma, and b) put my earrings back in! I remember walking down the corridor in my slippers and dressing gown when the time finally came. I remember ling on the bed and trying to be calm, but being so scared, and the whole thing feeling surreal. The nurse was talking to me, trying to be nice and calming and asking about my degree and my life, then feeling my limbs going heavy as the anaesthethic kicked in, and being outraged that they hadn’t asked me to count backwards from 10! And then, I remember waking up in this bed, with this lovely nurse with me – I just opened my eyes and was so tired and groggy and a bit tearful. He smiled, and said hi, and held my hand, and gave me the morphine button, and stroked my hair away that was stuck in my face, and I just slept, slept slept. I remember getting wheeled into a lift…and then seeing my mum. And sleeping. And hurting. And asking her to check if I had a stoma. And seeing my swollen, bruised, bloody and bandaged stomach (sounds dramatic) and just sleeping. And then the next few days are a bit of a blur!

 

I remember needing more morphine per dose. I remember being sick in the night. I remember that time lost its meaning  – there was no real day and night, I just slept and watched TV whenever, there was always nurses about and every few hours they did checks, so I never got fully to feel like there was a private night time. the only difference was when my family visited, in the day time. I remember having weird morphine induced phone calls (although they seemed normal at the time). I remember crying and calling my parents asking them to come and save me, and telling them what awful parents they were for abandoning me, those 2am times in pain and all alone, they werehard. But that Christmas day, when my mum decorated my room, and at 2am a different nice, bald nurse man sat with me and chatted. And he had an accent, although I cant remember what. And he was so nice, and talked to me for ages, and made me feel less lonely. Then all my family rotated through the hospital, and we played a game that made me laugh but that hurt my side so then I laughed more at the fact I couldn’t laugh! And I ate a chocolate pot for my Christmas lunch which was the biggest thing I had eaten in days. And I was able to show them how I could walk across the room. I remember my mum wheeling me about in a wheelchair, I remember being unable to walk to the chair let alone the window, I remember, so much. It is is so weird.

I am so proud of me, I was so strong. Not as much as others, I know, but , I was. For me. And I am proud of my family, and so amazed at the pain I was in, and what I overcame. And what I went through before that, to get to that point, and to get past that point. And obviously so much in my life has changed since then, but I am glad to report,  touch wood, that crohns is still one of them. I am, so far, still in remission (after another flare up post op) and I hope to goodness I never get put back into that situation.
I am sorry for the long ramble, entirely unexpected. but knowing what I was doing 4 years ago – lying in that bed, asleep, hurting, confused, with so much still to come…well, it deserves a bit of reflection.

 

H x

Happy Birthday, Little scar


2 years since my operation, and I can’t believe how much my life has changed. No time, energy or inclination for a long post- but I couldn’t knowingly let today go by without posting about it! 

I was in so much pain, so confused and so out of it, and now everything is different. Yes, I still post about hard days and bad days and pains and discomforts but I can live an almost normal life, I can eat what I want , I’m not in agonising pain and I am not throwing up. Today makes me feel grateful. 

Here’s hoping life stays good and happy

H c

Pot Luck


This illness of mine, its a fickle beast.

Sometimes it strikes hard and fast, a crippling blow to the body and soul; and in others it just kind of drifts around the peripherals of your life, always there but not always being felt. I am one of the lucky ones right now, I am in remission and loving it. But I see and hear of so many people who have it so much worse, whose bodies are still being ravaged by the disease and who are unable to continue to live their daily lives. I guess I was lucky that my Crohns got so bad so quickly, it was within a year of diagnosis that I had to have an operation. From going to just having really loud tummy rumbles to being unable to walk and being half carried into an ambulance due to pain – that’s drastic. My life changed and switched upside down, nothing was the same – but it did happen so fast that drastic action was taken and quickly, my operation that changed everything happened so fast. I am grateful that it got so bad so fast, that it was sorted so quickly. And quite a bit f that may have been to do with the fact I was on private healthcare due to my dads work – but regardless I would have been put in for an operation after my A and E visit.

I guess this post is a rambler, sorry – it just struck me again the other da how much stuff has changed for me in this past year, and how a year ago I would never have seen myself here, ever. Aside from that, I guess I am one of the lucky ones. Its important to remember that sometimes I think

H xx

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

2,688 hours ago today I was under the knife


Firstly – Happy Easter to you all!

 

Secondly – I am in shock. My operation was 4 months ago today…4 months…

I don’t even know how to explain it (times like this I admire people who blog and write and always find exactly the words they need to describe their thoughts…I feel as though my thoughts never fluidly translate into my writing, sorry). In one way it seems like a lifetime ago that I was waking up in that hospital room, panicking and checking if I had a stoma bag, being wheeled into my room, beeping myself with morphine, and being in my own hospital room and trying to figure out what was happening. Feels like a lifetime ago that before that I ended up in A and E (4 months 1 week ago today, if anyones interested) and that I was in so much pain I couldn’t stop retching or even walk in a straight line without help. And now, now I am fine; to all intensive purposes! I have a scar, well one and two tiny ones, I have tablets I take every day; but on the whole I am well now, and I appreciate that so much more than I used to. But, I just, cant believe its been 4 months. In my head it makes sense, but for my body – well I am in awe of myself (haha!) in terms of its biology. In 4 months it is has healed itself inside and out, recovered from an operation and thrown itself back into life, and I have recovered a lot quicker than I thought.

 

So, it has been 4 months, or 16 weeks, or 112 days, or about 2688 hours, or even 161,280 minutes.

 

That, that in itself is mad. In 2,688 hours my body has recovered itself, and improved itself. Hooray for my body! I just cant get my head around it. Forget all the achievements that I think I have made, forget the psychological things I have had to overcome with this disease- for now; for once (!), my body has done something right, and I am thinking it deserves acknowledgement!

Below is a picture of my main scar as of about 5pm today 🙂

 

Hope you are all gorging yourselves on chocolate!

H x

 

 

 

 

 

Image 

one month ago today


I might do a longer post later, I’m not sure.

But, 20/12/2013 I had my operation, one month ago today. I cant believe it, seems so long ago, another lifetime that I was waiting in that hospital ward holding my mums hand and watching the minute on the clock tick by and waiting, waiting. I remember waking up in recovery. I remember being given my morphine button. I remember getting wheeled back to my room – we had to go in a lift and the bed bumped in and out of the lift doors. I remember seeing my mum for the first time. I remember asking if I got a stoma bag. I remember it. But it feels so long ago.

 

Im nostalgic about it in a weird way I guess, I feel like a big thing that was in my life is over, in terms of the operation. A huge step in my life has been taken, forwards I hope; and of course I am glad, but it is a weird feeling. I hope that, in a weird selfish way, my scar remains visible for a while longer (which I know it will) but because I get caught in this weird place – one where I am stuck between not wanting people to treat me differently and treat me ill, but also wanting them to know I am ill (or was ill – hopefully its mainly in the past) and accept that fact when I have a bad day and not just think I am moaning. With the hospital and the surgery and the scar I was no longer in that place, I was accepted as having been ill and weaker and needing to recover, and I am not trying to say I want that, or need it in my life; but it felt good to have proof and to not be constantly trying to justify how I felt when I was down. Its the weirdest feeling, and one I never thought I would have, or struggle so much in expressing. It seems an almost childish desire in a way; a need to be recognised and supported with sympathy when I need it, but not to be pandered to when I don’t… is that possible? I hope to find that balance.

 

Maybe I wont need another post later…I hope that those ramblings make some sense to some of you, I never feel like I write in an eloquent fashion compared to many bloggers out there, but my aim is more to get honest thoughts and feelings out onto this space, as opposed to well written ones with good sentence structure!

 

One month can change a lifetime.

 

H x

Scars, Siblings and Smiling


My scar is looking brilliant, considering it is less than a month old! (see my older post: https://livingmylifewithcrohns.wordpress.com/2014/01/12/the-greatest-healing-therapy-is-friendship-and-love/ for a picture a few days ago) Although, to be fair I have never had an operation before, or even a proper scar, so I actually have very little idea about how it should be healing / looking like 3 and a half weeks in – but regardless I am very proud of my little body soldiering on through and fixing itself…well, it does owe me, its not like it normally works properly!

ANYWAYYY I am back home and am loving catching up on some missed family time, and enjoying the feeling of getting healthier and stronger again. My little siblings (a brother aged 2 and a sister aged 6…also a younger brother aged 18 but he isn’t really involved in this story 😉 ) LOVE looking at my scar, they find it hilarious. Most days when I get back into the house my youngest brother goes “me see your tummy tunnel, tummy tunnel!!!” which also involves squirming around and trying to pull my top up, no matter who else is in the room..awks. He loves it, he thinks its so weird, as soon as I show him he always looks shocked and goes “it very big” and then poddles off! My sister takes it one step further, this was our conversation yesterday:

“I want to see too if he gets to” Me : “Okay, look, its the same as yesterday.”
“Hmm…Its quite scratchy like isn’t it”
Me: “What…?”
“Well, it looks like a big scratch, but not a very good one because its a teeny weeny bit wiggly if you look really close. And my scratches are never wiggly like that.”
Me: “Oh. I know, it looks pretty weird, but it looks so much better than it used to, I think in the future we will hardly be able to see it”
“REALLY?!?! Well I don’t know it at the start because you had a big plaster on and wouldn’t let me see. remember?! Even though I showed you my wobbly tooth straight away”
Me:”Sorry. The doctor said I had to!”
“I think your doctor might not be very good. He made your tummy worse – now it has a big hole in and a weird scratch!”
Me: “No, he was making it better I feel…..right everyone left the room. good”

They make me laugh, blatant honesty is all you can expect and I love the fact that she still sees my illness as worse now than before because of my “wonky scratch”, what an innocent way to view it all, I love it!
Aside from that my recovery is continuing slowly, I am hoping to return to university next weekend – fingers crossed! I am so sick of being the ill kid and missing out on all the fun and everything involved with being there! I have missed all my exams and coursework deadlines – so have been busily filling out lots of paperwork, forms “evidence sheets” and the like to submit to my university so that they can grant me special considerations and then allow me to retake / re submit later in the year. FINGERS CROSSED. Well, not fingers crossed, if they decline it I have failed the semester and will be kicking up one hell of a fuss, since this is what I was told to do! Anyway, that rant is for another day 😉

I have been busy this morning ringing around the hospital and insurance companies, in an attempt to square everything out, because my organisational skills went downhill fast with the operation, I just had too much else on my mind! BLEUGH. I am having such bad sleep at the moment, I don’t manage to fall asleep until something crazy like 3am most days, even though I am in bed from about 11.30; too much on my mind I think .I am making list after list on my phone of things to do, and then slowly trying to work through them the next day…what an exciting life I lead!

Anyway, just thought my scar anecdote might bring a smile to a few of your faces. Apologies for the rest of the ramble! Just remember, as long as your smiling, you will be okay! Whether you have your own wonky scratch as a physical reminder of your disease or not; find something about the situation that will make you smile when things get tough, its the best medicine!

H x

Am I In the Wizrd of Oz?


The road I am on now isnt quite as exciting as the yellow brick road that dorothy got to follow, but I feel as if I am on my own road to discovery along the way to getting better. Just like dorothy along the way I have met different people and challenges, and each have changed me in some way and helped me towards my end goal of good health!

 

I met with my surgeon yesterday for a post-operative catch up, and he was very pleased with my progress. He says that I can eat as normal, and I had a blood test to check all my levels now, especially since i started back on Azathriaprine a week or so ago.I now dont have to see him again, I just will meet back with my consultant at the end of January when I am aiming to return to university. He explained that the main long term potential impact of the surgery is that the area removed in the operation is the one responsible in the body for the absorption of B12, which can cause anemia and illness if you do not have enough in your body. I have already been told I was slightly anemic, but that due to larger issues I may as well ignore it as it has little effect on me, so this is something else to watch. Apparently our bodies have a reserve, so I will not see in blood tests for a few months if this will have an impact on me, and if so I can either take supplement tablets or have injections every few months to give my body enough to be healthy. The surgeon also explained to me, in great detail and very patiently, that at the moment I have no symptons and there is really very little that i can do to prevent crohns coming back, I have to just cross my fingers, touch wood, wish on a star, and everything else under the sun and wait…and hope. Apparently there is little diet-related control that will help, and he truly believes stress has little impact. He basically said go, live your life as much as you can and we will deal with it if and when it reoccurs. He was very honest, saying because of how young I am there is a good chance that it will re-occur in my lifetime.

 

It is weird, in some ways I am glad that there is very little I can do to prevent Crohns returning ( I am expecting some flare ups, but I hope it will never become so long term again). THe biggest thing is to not smoke, which is fine –  I never have done and never intend to. It is weird, on one hand I can go, live my life and “ignore it” so far as possible and just wait, maybe I will be lucky maybe I wont, I ont have to drastically change my lifestyle or not eat certain things..but on the other I wish in a way they said “if you never eat steak again you will have a much better chance of not having it strike” at least then i feel as though I have a bit more control. It is like, in my head, how my friend views taking the Pill – it is her reponsibility and her control, she knows she takes the tablet at the correct time every day she knows what to do if she misses one, she gets more everytime she runs low and understands the risks and can control her birth control that way – I know that sounds like a weird comparison to make, but I wish I had that element of control over myself and my life and my health, but I have to accept that I just dont, and I cant. Scary, huh?

On a more positive note I am feeling much more human and better, and am able to eat more and walk about more. My biggest issue is just being drained of any energy very quickly, but I am learning to accept that and embrace it nap and relax, soon enough I am determined to be back on top and better.

I am afraid this post has little direction, apologies. I think it is important to air your thoughts, and right now mine are twirling round in endless circles, especially regarding the lack of control I feel in my life, its not an easy thing to swallow. Aside from that I am marching determinedly down my personal yellow brick road, with my friends and family around me. Yes, some days I get sidetracked and sit on the virtual kerb for a cry and a bit of a tantrum at the unfairness of it all, but soon enough I will be back on track and closer to my goal. 

 

H x

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