Saturday, 30 March 2013

#HAWMC Day 3: Wordless Wednesday

#HAWMC Day 2: Introduction

Today's post acts as an introduction to both my condition (Crohn's Disease) and my blog (if you are reading for the first time obviously....Why?!)
We are asked to post links to previous blog posts which may help those recently diagnosed; Here are some of m most popular posts which I hope will help new Crohnie's, (hopefully without scaring them into submission..) :)!!/2013/01/the-crohn-collector.html!/2012/01/into-danger-crohn.html!/2013/03/the-lovely-crohn.html

This post is written as part of WEGO Health's 30 posts in 3 days #HAWMC

#HAWMC Day 12: Hindsight

If I could go back in time and talk to myself on the day of my diagnosis, there are a few things I reckon i'd say.
I'd start by trying to calm myself down. Although knowing how easily I can get myself worked up into a frenzy, thats much easier said than done.
I'd tell myself to listen carefully to the doctors and not to be embarrased to ask questions. I'd tell myself to write everything down that I wanted to know and not to leave the hospital until I was confident I was well enough to manage on my own.
When you are first told you have a crohnic illness it can be a baffling time. More so in the cases where you don't have the first clue what the illness you've just been diagnosed with is. It can be terrifying and intimidating and you can feel ashamed and apprehensive about the future.
If I had a TARDIS (and the right kind of Doctor to operate it), i'd go back to that fateful day and tell myself to allow time to get to grip with my condition. To calmly explain Crohn's to my parents so as not to panic them, and to rest, and let the doctors help me. Not to get irritable with the people who care as I will need them in the months and years to come.
I'd also tell myself that although the future seems bleak at the minute, it will get brighter. That may take a tad more persuasion right enough. I'd let myself cry and then pick myself up and get myself ready for the tough fight ahead. I'd remind myself how strong i'll become and that I underestimate myself. I'd make myself believe it, because more than anything else, all people who love you can do is remind you how amazing you really are.

This post was written as part of WEGO Health's 30 posts in 30 days #HAWMC

Thursday, 28 March 2013

Tums the Word

I don't think I'm being out of line when I say that Crohn's isn't the most dignified of diseases.
Personally I've had my share of mortifying moments since Crohn's decided to become my reluctant life-partner.
As a patient with this condition you tend to find that the longer you suffer the more you endure. That isn't meant to sound as terrifying as it probably does to the uninitiated. What I mean, is that as with anything, the longer you spend with it the more.. become.
Layers of your once plastered dignity start to strip away like cheap wallpaper.
I've experienced moments I never thought truly existed outside of bad tv hospital dramas.
I've undergone procedures in areas only a mother could love. I've bared more flesh in front of cameras than most porn actresses show in a lifetime. I've been prodded and probed more than the little green men of Roswell.
I've handled all of these moments with, I would hope, as much respect and grace as I could muster. (Well, as gracefully as you can in a gown after downing 5litres of bowel prep).
I've remained as calm as possible, even when most of the time I've been screaming hysterically inside.
With Crohn's you learn to discard your inhibitions. There really isn't any point in taking them along for the ride.
I've had many awful, and horrendously embarrassing experiences thanks to my disease. There was the time I threw up all over myself on a bus full of people then preceded to face-plant the contents. There was the time I collapsed out and threw up (over myself again) in the middle of a Gil Scott Heron gig and was made to feel like a silly wee lassie who'd popped some dodgy pills. (Incidentally, I came round in time to catch a 20minute jazz version of 'The Bottle' through which I genuinely wanted to vomit). I HATE JAZZ.
There was the time I was in the middle of taking a phone call at work and had to put the woman on hold to go and release my bowels, (around 5times), before continuing with the call shivering like an underdressed Scot in the height of Winter (Summer).
There there was this evening. Where I nearly had an accident. I almost, just about, nearly, lost control of my bowels. This is not uncommon for Crohn's sufferers but has yet to happen to me. I kind of assumed it wouldn't, or at least not until I was considered 'of soiling oneself' age (whatever that maybe). I was TERRIFIED. I wanted to die on the spot and almost passed out through sheer panic. Nothing happened. I got home unscathed. But that's not the point. It's the fear. The fear of the unknown and the potential of what COULD happen.

I wanted you to know about this because I want you to know how much of our day we have to WASTE thinking about the disease thats WASTING away our insides.
It's not sexy and it's not dignified. But it's a part of my life.

Monday, 25 March 2013

Pain in the Gut

It often appears to me that a lot of people are under the impression that there is some sort of unspoken and ongoing competition taking place when it comes to having an illness.
This becomes more apparent when hearing someone talk about their own health gripes with others of a similar... persuasion. Take the conversation I heard earlier today:

Person 1: "I'm not feeling well today"
Person 2: "Oh dear. We've all got upset stomachs at the minute it
Person 3: "Well I've been ill for over a week now.."
Person 1: "Of course I've got my diabetes to worry about on top of
everything else.."

Now you may think there's nothing awry here but let's look at that conversation in a little more detail..
For a start these 3 women are all adults. They all have children and full time jobs and the normal worries we all have, like paying the bills and their futures and what's been happening in Home and Away.
So why are they partaking in a three way duel about who takes the Queen of Ill-Health crown?
The way I see it is that pain and suffering are individual. No one person has the right to lord it above anyone else, or worse, to make them feel small or that the way they feel isn't of any consequence compared to others.

Again this all comes down to the way people perceive things and the company these things are said in. To someone sitting in a comfortable home to say they are "starving" may seem churlish (to say the least) to someone living in poverty. So it can be a similar situation when say, a terminal cancer patient, is made to feel they are equally as hard done by as someone who has the sniffles.

For me I often choose not to mention the illness I have as this is exactly the kind of situation I want to avoid. I am well aware there are much more severe and life threatening conditions than Crohn's but that doesn't make my symptoms feel any different or less horrendous when I am at my worst. I don't want someone complaining of an upset stomach to feel I am trying to trump them in the illness stakes by saying something as childish as "well I have an INCURABLE stomach ache". Of course it stands to reason that even in general to-and-fro conversation people will opt to take things badly regardless of the intention behind it, as is there want. That's out with our control and an unfortunate part of
As sufferers we just have to bear in mind not to get involved in these types of conversational-competitions and use these potential discussions to show how empathetic we can be DESPITE what we have to go through ourselves. I don't want to become argumentative and bitter and have to carry that with me for the rest of my days.
My guts are heavy enough as it is.

Friday, 22 March 2013

It's Rear to See

Much is said of Crohn's Disease being an 'invisble illness'. This can be both a curse and a blessing.
On the postive side, no one knows you are sick unless you tell them. On the negative.. no one knows you are sick unless you tell them..  It can be difficult t get across just how awful you feel on the inside when there is not as much as a trace of it on the outside. 
But what is to be said of those other symptoms of Crohn's that aren't so invisible? The ones we, and others CAN see? They are unfortunately countless and can be at times, incredibly infuriating. Visual symptoms of the condition on the outside of the body can make a patient feel constantly aware of their illness. They can act as a big flashing, garish sign-post pointing out there is SOMETHING WRONG WITH YOU. Thus causing people to ask you about something you perhaps wanted to remain unspoken.
Of course I am by no means ashamed of having Crohn's. I am 100% happy to openly discuss my condition, at any time in any place. Although perhaps not during a film (rude), or in a library (rule-breaking), or during a sex act (fetishy and just plain weird).
So in the spirit of talking openly about those nasty visible symptoms, here are but a few of them i've had the displeasure of encountering in my Crohnie career to date..

1). Sore, flaky, dry scalp.
This can be intensely painful and irritating. An itchy head is by no means attractive (as every dandruff shampoo ad is ALWAYS telling us), and can lead down a slippery slope to feelings of anxiety and shame. I get this a lot before and during a bad flare-up. I'v tried lots of cosmetic and natural 'remedies' but have yet found anything to ease it. It seems when one symptom hit they all jump on top.

2). Hair falling out.
Again closely linked with number 1, my hair often falls out in clumps, and at an alarming rate during a flare. It's usually as dry as a bone and thinning rapidly. I have traditionally thick hair, which runs in the family, and often ache for the days when it was irritating me by falling like a lions mane around my face.

3). Dry Skin.
My once baby-soft skin gets dry and chapped and can be painful. Kindly, and because Crohn's is ALWAYS considerate, this normally happens around my face and neck. No hiding from that bad-boy. There are times when it hurts to apply face cream or even brush my hair.

4). Bloating.
This is the main offender when it comes to Crohn's side effects, and the one most sufferers experience most regularly. It often strikes suddenly and for prolonged periods, with seemingly no warning. I bloat a LOT. After most meals, in the evenings when my body is winding down, or when I want to wear a slim fitting dress, or when I only have one pair of clean jeans available and they're skinny jeans.. I can go from slender to 6months gone in 60seconds flat.

So what have we learned from this brief look at all these lovely side dishes we seem to get served alongside the main, diseased meal?
That we are thick-skinned (and dry-skinned) and incredibly tolerant. That we can cope with whatever life throws at us and handle each situation with the grace and dignity it requires. That although we can feel, and look ugly on the inside (believe me, i've seen the colonoscopy pictures), we can let our positivity shine through on the outside. 
Aw who am I kidding... does anyone know the number of a decent plastic surgeon in my local area..?

Thursday, 21 March 2013

Ache, Rattle and Roll

When I'm in pain with Crohn's, I often underestimate how scary it can look to the outside world.
I've had friends and family look aghast, shocked and even burst into tears to see me hurting. Its easy at times for me to forget just how bad the pain can be. To make things easier to bear for the people on the outside of my colon, I often find myself saying things like "Don't worry, I'm used to it!" - I am. I'm in pain a lot. But the truth is, I don't think you ever 'get used to it' you just learn to live with it. Over time pain changes and you learn your own wee ways to cope and distract yourself, or even ease it.
Crohn's pain is said to be similar to that of contractions. Never having popped out a bambino I can neither confirm not deny that, but I do understand where the comparison comes from. For me it normally comes in waves, sharp agonising pain every few minutes, getting closer together until eventually it's Pain City.
However the pain can also be a kind of dull ache or cramp, like trapped wind or period pain - but never the same - it's a feeling all of its own, which often makes it nigh on impossible to describe.
I have noticed I've developed certain tics over the years that I seem to go back to when I'm feeling at my worst. I clench my fist. Only my right one mind, two would make me look like I'm mental and I don't want to be caught walking through the streets with a screwed up face and two clenched fists, all kinds of hijinks could kick off.
I try to steady and slow my breathing. Maybe the contraction comparison gave me this idea, but it helps to calm me down if I get in a panic. For example if the pain hits when I'm at work or on the bus or doing a bungee jump. I often think 'I'm going to throw up, I'm going to collapse' - not productive thoughts so it helps to take a minute to slow the brain down. It also works as a sort of temporary distraction from focusing purely on the pain.

It must be hard for doctors to establish exactly what line to take because pain is subjective. One mans kick to the balls is another mans severed leg. (Obviously I use 'men' in this analogy as they have a lower pain threshold..And balls)
I find it difficult to describe my pain because I often don't realise just how bad it is. As I mentioned earlier I revert back to the old 'I'm used to it' chestnut. Just because I deal with it regularly doesn't necessarily mean I should be putting up with it though.
I suppose I settle for what I have, pain-wise. These painkillers will do, a day off work and I'll be fine, a lie down and I'll be better in an hour. Maybe not. Maybe I need to go the hospital or maybe I need to see what other meds I should/could be on. But as a Crohnie hospital isn't a place you want to frequent unless completely necessary. We spend enough time in them already for gawds sake!
But at the end of the day, only you know your own body and only you know what you can and can't bear. If it gets too much see someone qualified to help you. Don't be afraid of hospitals; it'll suck for a while but at least you won't have to feel you are alone and in the last throes of of existence. Pain is.. well, it's a pain. Like any other pains in your life don't tolerate it.
Be proud of how you deal with your disease but not too proud to seek the help when you really need it.
I'm telling myself this as much as you..

Monday, 4 March 2013

The Lovely Crohn's

As I approach the ripe old age of 30, (a little too rapidly for my liking), lately I've noticed a shift in my attitude towards my disease, and towards my body.
I've become much less hung up on how I look and how I appear to others. This preoccupation with my appearance was a running theme throughout my teens and my twenties, as it seems to be for most young women. It's one I'm certainly glad to be finally shaking off.

Most of my youth, up to the age of around 16, was spent looking like a tom-boy and wondering if I'd ever encounter those mythical things known as 'breasts' on my own body. I was both terrified and utterly desperate in equal measure. Thankfully the desperation didn't stretch to firing socks down my jumper or padding out my training bra with newspaper, instead I tried to wait patiently and resigned myself to the fact I'd be unappealing to the opposite sex until the day they arrived.
I didn't realise of course that I wasn't entirely unappealing to the opposite sex, I must've given them very little credit. I did have 'boyfriends' - which I seemed to take literally- and blossoming-men did take an interest in me because I was allegedly funny and smart, but I never at any point thought these interests were of the 'lets go behind the bike sheds' variety. I just assumed they wanted to hear me do funny voices or hilarious impressions of the teachers. Mr Clusker was my specialty, since you ask.
Anyway, time passed and I grew and grew.. And grew.. And all hell broke loose. I won't elaborate as my Dad might see this. Hi dad, love you xx

I became more paranoid about how I looked. I told myself I didn't care but I did. I was borderline obsessed with my stomach; it was always bloated and although I was stick thin I always felt 'fat'. Don't get me wrong, I thankfully by no means had any form of eating disorder, and never let these feelings get in the way of my day to day life. I ate, but again only little bits here and there. I'd be starving then only manage a few mouthfuls and was full. Not just satisfied but full to the point of feeling sick and bloated after every meal. This was my life though, I hadn't known anything else so why would I complain?
The bloated and sore feelings after eating were a chore in my youth, working and studying and doing funny voices all took their toll on my delicate stomach.
I felt fat and often thought, what's the point in making an effort to look good when I'm feeling like this? I looked milk-bottle white most of the time and was always icy cold.
Things escalated until eventually I was seriously ill.
Eventually, as you will no doubt know if you've read my blog before, I saw a few hundred doctors and nurses and was finally diagnosed with Crohn's Disease at the age of 26.
For the past few years I've been in and out of hospital. I've had surgery and multiple unpalatable treatments. I'll undoubtedly be on medication for the rest of my life and hospital stays will be a thing of my future. That's ok. It really is. But I mention it in the hope it serves to help people understand just quite how much the effects of illness, drugs, medical procedures and surgeries can have on your physical appearance. In turn, how these changes can affect the way you see yourself.
When I see photos of myself at my worst, (which are thankfully scarce), I feel saddened at how unwell I looked. I also feel frustrated at knowing this was something I had no control over. I know I don't want to be back in that position again, but I'm aware I don't really have any say in the matter. I was in agony, doubled up like the Hunchback of Notre Dame, pale, lifeless and so thin I was dangerously underweight.

Now, as I hurtle towards the exit of my twenties I am looking to the future with hope and a renewed sense of self. That sounds a little pretentious.. What I mean is that I like who I have become, disease or not. I know my limitations and I've accepted them. I know my body will never be conventionally 'perfect' (whatever that is). It's changeable, bloated, pale and scarred. But it's mine, and the only one i'll ever have. It's a tough piece of kit and I'm proud of what I've endured and will in the years to come. You should be too. Don't waste your youth worrying about how you look, more people think you are beautiful than you know. Embrace your illness - it's another challenge you can overcome.

Oh and I did end up with breasts, and they are quite exquisite. Obviously.