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

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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