If I could do anything as a Health Activist..

The phrase 'Health Activist' is a strange one for me. I like it, I just don't think it's something I could by any manner of means be described as right now. I have an illness and I like to blog about it. I like to hear responses from people going through the same/similar things, and I love that it's helped my friends and family to understand the intricacies of the disease which I've struggled to get across previously using only my voice as an instrument. Having another 'voice' in the blog has been, and still is, an amazing outlet for me and has encouraged me to become more open and honest about how I'm feeling.
So what does all this mean in terms of what I can do to help others? Well obviously if money was no object I'd be ploughing every penny I had into trying to find a cure for Crohn's Disease. As it stands there is none (cure nor available pennies :( ) and the varied treatments available rarely work long-term and most come with highly unpleasant side effects. Crohn's is not alone in it's complications too, as the disease lowers your immune system, it makes it much harder for your body to fight normally silly little things like colds and achy bones, and the long term affects on the body are not worth going into right now.
So as the whole 'cure' idea is unfortunately pie in the sky material I like to think what I can do in my own little corner of the world to help others in the same Crohn's filled boat as myself. How this could manifest itself I'm not sure - the blog is a great way to reach a worldwide audience with my story but what about those who are not yet computer literate? (my parents for example) - how to express to them what I'm going through? Talking is a start and something I've had to learn to do more of in order to get across the full extent of my symptoms. As my consultant has often said (shouted) "TALK TO ME KATHLEEN!" - her advice is pretty rock solid, how can she begin to help me when I hold things back and underplay my symptoms?
So the best help I could be right now is to plug on with the blog and continue to try and encourage others to speak up about what they are going through. As the man with the white glove once said, You are not alone.
Nothing too grand there unfortunately, but I'm still dealing with this slowly but surely myself - the miracle-cure-finding will come soon I'm sure ;)


This post was written as part of NHBPM - 30 health posts in 30 days

5 things (well 3..) that changed my Life

I'm cheating a bit here with this post as I'm in my sickbed and shattered and have already written too much for the first 3. Forgive me and my fuzzy head if this is all a jumble of emotions :)

1. Being diagnosed with Crohn's.
Obviously this badboy has to be top of my list (for now anyway) as i'd say getting this disease has been the biggest 'life-changer' for me so far. I was devastated when I found out this disease is for life, felt like I'd been handed a life-sentence. Suppose I have really, without the bars and the lack of decent toilet facilities. I'm still not sure I've accepted the 'life-long' aspect, only a year later, that will come eventually I'm sure but I'm still definitely not quite there yet.
However, being diagnosed with Crohn's changed my life for other reasons too. It's made me realise why I've had these problems pretty much my entire life, and that it wasn't my imagination, something WAS wrong and still us. It was such a weight lifted in a strange way to finally have an explanation for my symptoms and although I was saddened it's not something that will ever be easily resolved, it was a relief nevertheless to know exactly what I was dealing with.
Being lumped with a life-long illness has also made it clear who are true friends and who will stick by me through thick and thin (I've been both..) - invaluable information for life.

2. Having my Operation.
I am well aware just how lucky I am to have been granted an operation so early in my Crohn's 'career'. When the pain was at its worst I met with a male surgeon who reduced me to tears by telling me i'd have a colostomy "for life" and I had so many more treatments to go through before I even "stood a chance" of having the surgery I so badly needed.
I was completely physically and mentally broken by this point and this just came as yet another major set back and straight up kick to the colon. My amazing consultant was enraged by this tete a tete and rushed through a surgical meeting where she explained my mental and physical health until they signed on the dotted line. I am eternally grateful for this. And she knows it.
After my op, the surgeon told me I had the worst case of Crohn's she had seen and I would've been hospitalised in a matter of weeks had I gone on as I had been. The pain id been going through was unbearable and the change after a few hours on the operating table has been unbelievable.

3. Meeting 'him indoors'
I met my beloved many years ago when we worked together in a restaurant. We became friends not too long before we eventually became a couple. The transition from mates to 'mates' seems pretty seamless in my memory but if I linger on it too long I remember it really wasn't that straightforward. Irrespective of our beginnings we are now sharing a home with a cat over 6years later. And no it's been far from plain sailing but who's relationship is? Im still stupidly smitten as is he. Well I don't want to speak for him but he says he is and I'm pretty awesome so all the evidence is there..
The reason I say he has changed my life is mainly down to the happiness he has brought into it. I was far from a misery-guts before him, but I didn't quite realise how happy another human could make me. He makes me want to be the best I can, for me and for 'us' and the fact that I've brought Crohn's into the relationship is just, as he says, something we will have to deal with.
I'm well aware it's not the end of the world to be alone, and if the worst happened I know I'd survive (almost straying into Gloria Gaynor territory there..) but the pleasure of coming home too, and building a life with someone you love is a pleasure and a privilege too addictive to give up. Besides, his cooking is far too good for me (and my Crohn's) x


This post was written as part of NHBPM - 30 health posts in 30 days

What happens when you press "Publish"

I love blogging. It was my younger brothers idea I start the blog. He suggested it would be a good way to keep my mind active and off-load after my operation in Jan this year. I had 4 long months watching daytime tv ahead of me, so anything to keep me from becoming a gibbering fool seemed a great prospect. I wrote my 1st post in Feb and only my family and a few friends had read it. They gave me great feedback so I gained the confidence after writing a few more, to post to a wider audience. I posted the links to my posts on Facebook and Twitter then later set up my own Facebook page specifically for the blog. ('Crohnological Order' thanks for asking ;) ) 
When more and more people began to read my posts I was thrilled! I've yet to receive any negative feedback (although I reckon people are just too polite) and I've met some great people online who have become friends now not just readers. 
I am a bit of a spelling obsessive so I hate myself intensely when I spot a mistake after I've published a post. If I didn't have an arthritic leg I'd be kicking it constantly. I'm often too over-excited to share my post with the world that I don't read it over again. School-girl error. 
 I started with a couple of views a day and now people from over 30countries read my blog and I usually get between 40-100 views per day. Very exciting to me in my little part of the world. 
It's genuinely enjoyable for me writing the blog and thrilling when I receive feedback or am contacted by a reader. So I'll keep writing as I've a lifetime of Crohn's tales still to come. 


This post was written as part of NHBPM - 30 health posts in 30 days

Dear 18year old Me

As I am currently 28 - writing a letter to 18year old me will take me back a decade. Terrifying to think I've been on the planet for that long in the first place..

Dear Kathleen (aged 18),

Hello. I can guess straight away you'll be annoyed at the opening line of this letter as I've called you 'Kathleen' and right now I know you are too cool for school and have taken on 'Kath' as your new moniker. It will stick and most of your friends will refer to you this way from then on, so there you go smarty-pants.
Already arguing with my 18yr old self. Typical. You are very like your mother right now and are probably in the midst of an argument with her as we speak. She infuriates you so much at times but I know you hate arguing with each other and it upsets you so much you really should just be the bigger person and apologise. (yes, even if it's not your fault). Believe me it's not worth it and you will come to regret every harsh word spoken in haste later.
There is a lot going on in your life right now, you are in the first flush of a new relationship infact, and a bit giddy with it all, but be careful and reign that in, as there will be heartache ahead. (sorry about that).
Don't worry, you will be sad, but it'll be followed with absolute joy and love beyond compare! Trust me on that. He's awesome. (and you just get soppier as the years go on).
I know you think in 10years time your life will be sorted. You'll be married probably with your dream job and maybe a little one on the way. Hmm. Well I'll not give it all away but there are a few changes of opinion you will have later on those, but I won't spoil that for you now.
There are also some very scary times ahead. You will become very ill and develop something horrible called Crohn's Disease. It's a long and arduous process trying to establish what you've got but you will get there. (That's right, you know all those 'other' problems you have - that's what it's been all along! Weird eh?) So you will get that sorted and start to learn to live with it. I know that may be something you will want to weep and wail about and give it the full drama queen hysterics, but you'll be cool as a Crohn's cucumber later believe me. You will cope with it because you have to.
You know how you often feel that you won't ever make Mum and Dad proud of you? Well you do. You'll realise that they always have been and always will be - it really doesn't matter what career path you choose or whether you are the next Picasso, as they love you with a ferocity that knows no bounds.
So a lot to fit in, in the next decade, but it's a good one, filled with heartache and love, sadness, happiness, excitement (and one horrifying night in the pub after thinking you could polish off every drink on the bar) -infact, that might have already happened.. Is that why you've fallen out with mum? You DEFINITELY need to apologise for that one.

Anyway, heres to the next 10years together. You feel weak right now but you are stronger than you think and don't forget it.

Love and Nutella,
Kath (aged 28) x x


This post was written as part of NHBPM - 30 health posts in 30 days

My TV Show - You Got Crohned!

This post requires me to come up with a TV show based around my blog. As my blog is purely about me and my adventures with Crohn's, my idea for a tv show would be based around the initial diagnosis of Crohns Disease and would be crudely titled "You got Crohned!"
The game show would be handily set in a hospital and would consist of a series of tests being carried out to establish a diagnosis of Crohn's disease (or not as the case may be).
In my personal experience, and of many other Crohn's patients I've conversed with, reaching a diagnosis of the disease is normally a very long and arduous process. Can be incredibly distressing and stressful, and usually requires many visits to and from doctors and hospitals before finally reaching a conclusion. Then the fun can really start when your treatment begins.. This way we cut short the waiting and worrying and skip straight to the diagnosis.
My idea consists of a hospital, a patient suffering with possible Crohn's symptoms and a team of medical professionals on hand.
The show will begin with a brief introduction to our patient (contestant), including a potted medical history.
We then begin a series of tests required to rule out any other possible illnesses - the patient will be whizzed through MRI scans, CT scans, given blood tests, a colonoscopy and anything else required to reach a satisfactory conclusion. Of course I'm not a monster, these tests will be spread over 2-3 days, endurance is the key, if you can't take the poking and prodding get out of the hospital!
The cameras will follow the contestant everywhere and the more x-rated scenes will of course be edited for a younger audience. (We want this to be enjoyed by the whole family!)
When an eventual diagnosis is reached the camera will zoom in on the contestants face to capture their reaction as he/she hears his/her fate. A magical moment. See the ratings soar!
When the contestant has been advised it is indeed Crohn's they will be handed their prizes, am immediate consultation with a doctor who will discuss best form of treatment and a Crohnie-goodie-bag. This will include wet wipes, a years supply of toilet roll, Vaseline, painkillers, a variety of soups, milkshakes, and of course not forgetting the star prize, a gold plated self-cleaning toilet!
Congratulations!
The episode, having been already edited into a manageable half hour, will see the credits roll over images of said contestant being wheeled to the hospital car park to make his/her journey home to the cheers of an adoring crowd.
I know, I'm an absolute genius. Perfect.
Any television production companies feel free to contact me anytime, I'll be awaiting the call!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

30 posts in 30 days - Titles of my Future Book

Hello again Dear Reader!

I am taking part in WEGO Health’s National Blog Post Month (30posts in 30days). I am only allowed 2 ‘get out of post free days’ and receive prompts on each days post. So here is numero uno. Only another 29 to go!

Titles of my Future Book

This post is particularly interesting to me as writing a book is an idea I think about quite frequently. Several friends and family members tell me regularly they think I have a nice touch when it comes to writing and would love me to write more. But I don’t have the confidence. Plus I feel I am too early in living with my condition to pass on enough experience or don’t have enough knowledge to impart. So maybe later. I do absolutely love the idea that people may enjoy reading my witterings and even garner something from it.

But as I have to come up with book titles for the purposes of this post, here are some at the forefront of my mind, and some I prepared (used) earlier..

‘The Crohnicles’ – [ok so this was actually my Dad’s idea, and as we all know Dad’s, (after Mum’s obviously) are always right]

‘Queen of The Crohn Age ‘

‘The Crohn Ranger’

‘For your Eyes Crohnly’

‘The Philosophers Crohn’

My personal favourite is the last one but I think these may possibly be subject to copyright..

I do love a pun and ‘Crohn’s’ is a surprisingly good word for twisting into humorous titles. I’ve made the most of this discovery throughout my blog.

This post also requires me to write a brief synopsis for my ‘book’ (which is actually MUCH harder than I thought it would be) but here goes..

‘I suffer from Crohn’s Disease, a crohnic inflammatory disease of the bowel and intestines. I hope to entertain and educate you over the next [insert number here] pages with my health related rambles. I’ll take you on a magical trip around my colon. And if you plan to read further than this, my bowels applaud you in advance.’

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Crohny, Crohny, Nights

I'm feeling rotten tonight.
Writing this blog usually helps with those feelings of rotten-ness so I thought I would give it a bash tonight when my rotten-ness is at it's peak.
I apologise in advance if this post is depressing and I'll allow you all a few minutes to prepare yourselves a noose.
Lots of abdominal pain last night and this morning. I've an achy head, i'm dizzy and my arthritis is playing up so my feet and legs are killing me.
Constant pulsing in my muscles and I can hardly keep my eyes open, seem to always be shattered. Plus I'm bloated to the size of Jabba the Hut. (That is the fat one from Star Wars? Star Trek? Stars in their Eyes? one of those shows right?)
It's not so much those symptoms or the pain that are getting to me, I'm used to this most days, it's more the gradual realisation of the limitations I'm starting to feel having a chronic illness puts on my life.
I'm not even talking about major life changing events here, or my Crohns stopping me from swimming the Channel or climbing Mount Kilimanjaro (neither of which I have any inclination or desire to do). It's more a gradual build up of tiny annoyances that chip away at me until I sink into the blues.
For example, here's how petty my Crohn's peeves have been today. I have arthritis, mainly in my left knee - this means when it's particularly bad its painful to walk on and I can barely bend my knee. I was furious with myself this morning at not being able to sit cross legged on the bus like I 'normally do' - normal being before Crohn's. I got to work and was so uncomfortable at my desk due to being a big fat bloater who'd chosen to wear those most impractical of garments, the skinny Jean. Again kicking myself (not literally obviously, knees too bloody sore for that) that I'd worn them when I should've known better.
Visit to my mum and dads after where my dad always takes joy in making his only daughter a wee bacon roll on arrival. Couldn't eat the damn thing without giving it big licks on the 'ouch' front every-time I tried. Kicking myself this time (again not literally, I really should hire some sort of Kick-Bot to take care of these kicks..) for making my Pa feel bad and for not being able to consume a simple bap on pig without issues.
My mum spent a chunk of the day telling me she admires me so much for the way I'm handling my illness. Really I want to say, at times I'm clearly not handling it at all!!
Then we had a wander around the shops where I felt dizzy and my legs ached. Feeling frustrated again that it's a case of my 65 year old mum asking ME if SHE is walking too fast for me. Makes me feel such a weakling, and in no way is that my mums doing, it's purely this wave that passes over me from time to time and is hard to shake.
It's so difficult to keep up this facade of everything being fine, not with my nearest and dearest as they know only too well how I truly feel, but with people on the outside of my intimate circle (steady..)
It's still very early days for me Crohns-wise and I still need to try and allow myself time to adapt to my new body. Just gutting when that realisation seems to punch me in the guts again and again.
Even midway through writing this I started blubbing and had to have a heart to heart with my beloved.
That crying has now given me a beast of a head ache so I'm retiring to the boudoir before I use this as another excuse to hire my Kick-Bot to administer a sharp boot to my shins.
K x