Saturday, 31 March 2012

Keep Calm Poster #HAWMC

'Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition?'

I've chosen the above slogan on my 'Keep Calm' poster as I feel it relates well to my condition. Due to the delicate nature of Crohn's Disease, it can be an incredibly nerve-wracking time when you happen to find yourself in a new place and realise the urge to visit the facilities has come over you. Where is it? How close by? In earshot of the people you are with? All of these thoughts go through your mind at a rapid rate as soon as you are in the building.
Crohn's sufferers quickly become experts in seeking out toilets, it's a wonderful bonus to having the disease. Like a moth to a flame. Or a rear to the porcelain...

Post written as part of WEGO Health #HAWMC

Quotation Inspiration #HAWMC

'Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.'

This post calls for me to think of a quote I have heard which has inspired me, either negatively or positively. The quote i've chosen, is one that was directed towards me, when talking about my Crohn's diagnosis. The person who said it, (who shall remain nameless to protect his/her identity from furious friends and family) had no grasp of Crohn's or what it entails, and told me;

"It must be your life-style that's caused it"

Hmm. Where to begin when dissecting this comment? My first instinct at the time, was to imprint my knuckles in the persons face cheeks. But enjoyable as that would've been, it simply would not have been productive. So I instead calmly explained that, that was utter bullshit and no one can be held responsible for catching Crohn's.
Doctors do not yet know what causes the disease, so how can it be said that I am to blame? As for my 'life-style' - I don't smoke, do drugs, rarely drink and am relatively fit. I eat a vaguely healthy diet and have regular check-ups with doctor and dentist. Smoking is advised to be avoided where Crohn's is concerned, yes, but as I don't smoke this is a mute point for me.
My main problem with this comment wasn't even the ignorance of it, it was the accusatory way it was said and how completely dismissive it seemed. 'Ah well it's your fault, get over it' - is how it felt. Would you have said the same to a loved one? And if the answer to that is yes, you are a bit of an arse aren't you?
This quote 'inspired' me to remain calm in the face of ignorance and continue to spread the word that Crohn's is a disease that is not 'dirty' or anyone who suffers from it's 'fault'. It's relentless and can cause crippling depression - something that is not helped by comments like the aforementioned. Please be tolerant. And as the saying goes, if you don't have anything nice to say don't say anything at all.

Post written as part of WEGO Health #HAWMC

I Write About My Health Because.. #HAWMC

I started to write this blog in order to help ease my boredom in the weeks and months following my first surgery. It was my younger brothers idea, he is an excellent writer himself and suggested I give it a go to help while away the hours.
Blogging quickly went from being a hobby and way of filling my time off, to an addiction to writing and an excellent outlet in which to express myself and share experiences. As my confidence grew I started to share the blog with others and was amazed at the positive response it received.
I now write to help myself deal with and rationalize when I'm going through, and in the hope of helping others who are suffering too. I've heard from fellow Crohnie's all over the globe and their families, who say reading my story has helped them feel less alone or has made it easier to express what they are going through to lose they love. You have no idea how happy this makes me! It's a complete joy that anyone even bothers to read it, let alone takes the time to contact me directly.
I cant stop writing now - it helps me convey the more complex aspects of my disease to those around me, and has led to the creation of some wonderful new friendships, shared advice and experience and allows me the chance to get things clearer in my mind.
When using humour too it allows me to laugh at myself and focus on the ridiculousness of my body at times. And thats a LOT of the time as I'm utterly ridiculous :)

Post written as part of WEGO Health #HAWMC

Heath Time Capsule #HAWMC

I'm excited to be participating in WEGO Health's month of posts again this year! The challenge is to post each day during the month of April using prompts sent to us from WEGO themselves. So as it is April 1st, here is my 1st post!

'Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?'

So if I had to create a time capsule relating to myself and my health, the main thing I reckon that would need to go in would be my blog. Quite how the mechanics of that would work i'm not so sure - print out the pages? List the web address for people in 100years time to try and dechiper?
The blog would have to be the main thing as it contains (so far) over a years worth of information and experiences around my life with Crohn's Disease. A vital tool for future generations to establish how far they have come (i hope).
I'd include some pictures and photos of myself and my family, a loo roll for people of the future to LOL at (I assume in the future there will be some incredibly high tech way to wipe ones backside, or at least a robot will do it for you?) I'd also list the name of the amazing surgeon who performed my operation and the wonderful consultant who has gone beyond the call of duty to help me get well. I'd want them to be remembered as truly great women who really helped others.
I'd list the day to day trials of dealing with and living with Crohn's and not sugar-coat it. I'd try to explain how it feels (felt) to deal with a crohnic illness and how it wasn't the end of my life - just the beginning of a difficult part of it.
I'd hope the people who discovered my time capsule in 100years can look at my experiences and laugh a little, as at that stage, they would've found a cure.

Post written as part of WEGO Health #HAWMC

Friday, 30 March 2012

The Thrill Is Crohn

I haven't been coping well with my disease lately. Mentally and physically. Mainly mentally. For about a month now I've felt as though I'm going insane, angry and sad and fed up with everyone and everything. Normally I'd put this down to a severe case of PMT but this seems more. More focused around Crohn's.
Ive been getting increasingly frustrated at things that I used to just raise an eyebrow at and move on. For example, when people ask "What's wrong?" when they know I have Crohn's Disease. People who tell me to "Get well soon!" - but know I won't get well as it's incurable.
I know these things come from a well-meaning place but they feel to me like yet another wall I can't get over, another mountain I can't climb, another bloody curry I can't eat.
I've come to terms with the difficulty in explaining Crohn's to people, I understand just because I have it I can't assume people on the outside will automatically know the ins and outs. So why, now, am I getting totally furious when people don't seem aware of what I'm going through? It seems I've reached my breaking point, and now I'm there I don't know where to go next. If I keep all this pent up inside I will end up exploding at someone who doesn't deserve it, and if I try to explain how I feel (yet again) I'll feel like I'm slamming my colon against a brick wall.
Crohn's is so hard to cope with and I usually try to remain pretty upbeat about the whole shenanigans, but right now I can't seem to shake the frustration at the lack of understanding and compassion from some.
People need to know what this disease can do to a person inside and out. I can shout about it til I'm blue in the face but it seems many people still aren't prepared to listen.

Sunday, 25 March 2012

Dear 16 Year Old Me #HAWMC

'Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?'

Dear Kathleen (aged 16),

Right now you slap bang in the middle of your teens and it's positively dire isn't it? You have accrued a few great friends from your time in high school so far, a couple of whom you will carry with you on your journey for many years to come. Cherish them please, and consider the things you do and say. Harsh words or a glance in the wrong direction at this delicate stage in your life could really balls things up.
Concentrate hard. I know thats a boring piece of advice, but there are hormones flying around like midges in a Scottish Summer right now, so try and reign yourself in. You are finally starting to look less like a 14 year old boy and more like a young woman, I know it's a bit of a shocker when those curvy bits start to appear seemingly from nowhere! All I can say is good luck with that..
You are naive, so be careful. Yes I know you think you are the all-knowing teen but you still have lots to learn. And you will. Eventually.
Be kind to others, especially our parents, and Mark. The next few years will be a struggle for you all but it will get better. I know! Be patient. And tolerant. Remember the world is not against you - you are a little speck in the grand scheme of things who can actually achieve a lot if you put your mind to it.
Anyway i'm waffling (you will not grow out of that, sorry). Most importantly, laugh, everyday if you can. You have no idea how important it is. Ensure the memories you are making now are jam-packed with laughter. I can still remember them now...

Love, Kath (aged 28 and a half) xx

This post was written as part of WEGO Health #HAWMC

Health Haiku #HAWMC

'Health haiku. Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables'

Crohn's is a cruel one,
Pain may be relentless,
Eased if you smile some :)

This post was written as part of WEGO Health #HAWMC

Health Activist Choice #HAWMC

'I used to be… but I’m not anymore. Write a 10 line poem where each line is the phrase “I used to be ____ but I’m not anymore.” What did you fill in the blank?'

I used to be impatient, but i'm not anymore.
I used to be an outpatient, but i'm not anymore.
I used to be free and easy, but i'm not anymore.
I used to be consistently queasy, but i'm not anymore.
I used to be well, but i'm not anymore.
I used to be able to drink zinfandel, but i'm not anymore.
I used to be in constant pain, but i'm not anymore.
I used to be afraid to complain, but i'm not anymore.
I used to be in hospital, but i'm not anymore.
I used to be ignorant to Crohn's, but i'm not anymore.

This post was written as part of WEGO Health #HAWMC

Sunday, 18 March 2012

Toilet & Trouble

We Crohnies spend a lot of time getting up close and personal with the porcelain. I want my fellow diseased darlings to be as comfortable as possible in visiting the bathroom, so I plan to add a new feature to my blog in which I will be rating toilet facilities near and far!
You can help me in my quest by emailing me your pics and reviews at, Tweeting me @kathfantastic or sending me a message on my Facebook page CrohnologicalOrder! List where in the world the loo is, a pic, standard of cleanliness and give it a 5 toilet rating (5being a top class toilet) :)

Thanks in advance and happy toilet times! X

Thursday, 15 March 2012

Dog With A Crohn

For the duration of my Crohn's 'career' so far, I've had, on the whole, some excellent doctors and nurses looking after me. I have an wonderful consultant in my local hospital, a lovely woman who deals with my drug trial that I see regularly and a few numbers I can call in an 'emergency'. This is so reassuring for me, after having to explain myself again and again to different faces for over a year.
From my experiences in talking to other Crohnie's, these pleasant experiences with the caring profession can unfortunately be quite rare. Don't get me wrong, I think the health service is wonderful and I genuinely do not know what I would've done without them, but sometimes it can be a bit of a minefield in negotiating your way through the business of healthcare politics.
A lovely lady I met through Twitter tweeted today that her GP had said "You don't look like you have Crohn's" - what?! What does that even mean?Has there been a chart invented to establish what disease you have simply by looking at someone? If so why are we wasting so much money on advanced medical equipment to carry out tests when all we have to do is get a peek at the patients visage?!
Crazy town there Doc. Pretty insulting to boot. Is he implying she is exaggerating her disease? Or that she is somehow magically cured since her last visit?
It feels like a major blow at times when the people who are supposed to understand the intricacies of Crohn's still stumble with the basics.
Wasting time really is no good with an illness like Crohn's - it can deteriorate so quickly there's no time to be batted from pillar to post until you are listened to. The fact is, with all the mountains of knowledge our doctors have remember they are not feeling what we feel and living with what we do day in, day out. That's what is important to convey. For me, the only moment I felt I was really being understood was when I'd been through every treatment they could fire at me and still felt like death would've been a more viable option. My consultant took one look at me and said "This is really getting to you eh? I can see you've had enough" - then she did everything she could to push for my surgery. Rather than getting me put on a 6month waiting list she attended lots of meetings with surgeons to fight my corner. One medical professional having to act like a defence lawyer up in front of a group of medical 'judges' trying to get me off the Crohnie hook.
There you see the main problem- why does the phrase 'fight' even have to enter the equation? We are sick - we just want to feel better. I completely understand having to wait for surgery or appointments with the VIPs of the medical world, there are only so many staff to go round. But, and here's a radical thought here so bear with me, wouldn't things get dealt with a lot quicker if our GPs didn't firstly assume we are desperate for a sick note or faking for drugs? If they at least gave us the benefit of the doubt and listened- then decided we are fit to be treated? Obviously generalising here but in my experience any appointment with my GP is undercut with the time constraint and feeling of being doubted.
My main tip is to try and be a Patient-Patient. It can be incredibly frustrating to have someone in the medical profession doubt you, or come out with judgements on your illness which make you want to garrotte them there and then. But these urges are counter-productive. Mores the pity. Curb the rage and don't allow yourself to get agitated. Explain as much as you can as to where you are in terms of your illness and if you are still dissatisfied, calmly request a second opinion.
If that doesn't have the required effect, become an Impatient Patient - go back again and again until you are taken seriously, until you make your doctor sick (of the sight of you).

Friday, 9 March 2012

Just The Crohnic

I had a lovely night last night. Finished work early and met one of my favourite human women for a chat and cuddles and food. This human woman, let's call her Sarah cos that her name, 'gets it'. I actually hate that phrase, but it unfortunately describes exactly what I mean.
We have known one another for about 15years now, so she knows me pretty well i'd say. Usually better than I know myself to be honest.
She knows what Crohn's is because she cares about me and therefore listens when I talk about it. She visits me when I'm in hospital, checks up on me almost every other day, and never makes me feel bad if I cancel plans, can't do whatever we were planning to, or yawn and almost fall asleep in her company.
It's hard and I sometimes feel guilty when I let friends like Sarah down. She goes out of her way not to make me feel this way, but it's frustrating to see Crohn's get in the way of fun times. Making plans is hard enough with a full time job, partner, friends, family, and a cat to think of, without worrying you won't be well enough to actually attend said planned event.
Sarah asks how I am and let's me wax lyrical on it. She gets annoyed when I apologise as she tells me I shouldn't be apologising for something I have no control over and shouldn't feel I have to limit the amount of time I spend discussing my illness.
We have, like everyone else in my little world, had to change our routine very slightly to incorporate my illness. It may mean I'm not well enough to leave the house and meet her so she will come to me (usually with flowers) or that we limit our nights out to a couple of hours with coffee instead of the taxis at 1a.m of our teens.
It's very important to have people in your life who don't want you to sugar coat what you are going through, don't shy away from the more gruesome details of the disease, and let you talk. But most importantly, don't let you wallow. Sarah and my partner are both particularly excellent at this - albeit in very different ways. Sometimes this can grate at the time but it's something I'm very grateful for.
Sarah always makes time for me even though her life is fit to bursting itself. She feels what I feel and vice versa. When she is sad my heart aches and I want to cuddle her senseless til she forgets all about her problems, like some sort of hug-hypnosis that I've just invented. Hug-Hypnosis™.
Failing that we just talk - and more importantly listen. I know that I can say anything to her and she wouldn't judge me. We share everything together and don't have to trim off bits of the conversation to suit others because we 'get' one another. That phrase again..
Anyway, the point is, everyone should have a 'Sarah'.
But not mine, because she is MINE, get your own.