Monday, 27 February 2012

Dog With A Crohn

Crohn's Disease is commonly known as an 'invisible illness'.
By definition, 'invisible' means ; "impossible or nearly impossible to see, not prominent or readily noticeable".
This sometimes makes it incredibly difficult to convey how you are feeling to those on the outside.
For example, if I'm feeling rough and weak as a kitten, it's often hard to express this to others, when to them I may look like everything with my bowels is hunky-dory. Nothing out of the ordinary. It can often feel like fighting a losing battle in telling people I feel well below par when there are no visible clues.
On several occasions I've been left feeling as though I'm perhaps faking it, or being a bit over dramatic when in reality my insides feel like I've been run over then reversed over again by several buses. This is when it can get incredibly frustrating and even upsetting at times when you feel you are being forced to justify your illness.
Because Crohn's is not particularly widely publicised, and as common as it can be, from mild to severe cases, it's still considered by some to be a 'taboo' subject. The wide ranging variety of symptoms are not well-known, and as Crohn's can effect every part of the body and affects each patient slightly differently, it can be confusing for many to get to grips with.
As I myself, have encountered the difficulties of these disapproving glances and inappropriate comments related to my 'invisible illness' first hand, I thought I'd share a few scenarios with you all to hopefully help in the event of this awkwardness occurring for you too..

Scenario A)
Q. "But you should be fine now? You've had your operation/ treatment/ hospital stay [delete as appropriate]"
A. "Ah! I see where you are coming from. But as Crohn's Disease is NOT curable.. I'm NOT cured. I feel better, yes, but I still have Crohn's and will have flare-ups from time to time. Thanks for your concern though!"

Scenario B)
Q. "Are you sure you are ill? You look fine to me"
A. "Ah! Again thanks for your concern, but as I have Crohn's Disease it means my symptoms are mainly not visible. The pain and other issues are going on inside at the moment. But i'll take this as a compliment, thank-you!"

Scenario C)
Q. "I saw you out and about yesterday. If your having a flare shouldn't you be in hospital?"
A. "Wow! You are a concerned little bugger aren't you?! Firstly- are you stalking me? If so, please stop. But yes, thanks for your concern, I'm feeling like death but I still have use of my legs and arms, therefore for now, hospital is not necessary, just plenty rest. Thanks! And remember, lay off the stalking, thanks"

Scenario D)
Q. "You've started your medication so you should be feeling better?"
A. "Starting to get a little bit irritated with you now to be honest. Thanks for the unwavering concern in my bowels..Yes I've started my drug trial but drugs often have side effects too, therefore I may feel worse before I start to feel better. Even then, I AM NOT CURED. Back off. Thanks.."

So there you have it, should you find yourself involved in any of the above situations, or anything similar, you'll now know exactly how to handle yourself! Don't thank me, you are so welcome.
It can be very frustrating when people, especially those you've explained it to endless times, just don't seem to get it. Be patient. Remember that these fools may just need a little push to realise that Crohn's is 'invisible' - its a breeze on the outside; disease on the inside. Most of the time that is.
And if they still don't believe you, or doubt your invalid-validity, they are really not worth getting your knickers in a twist over. Don't let other peoples attitudes get on top of you, look after YOU- inside and out. x

Wednesday, 22 February 2012

Crohn With The Wind

Had my dreaded colonoscopy today. I say 'dreaded' not because of the procedure itself, (although I can think of a million ways id rather spend an afternoon..) But because of my mental state in the last few weeks leading up to it. I had totally convinced myself something was terribly wrong, another op would be needed and all the worries that go along with that.
Stress makes my symptoms worse, so when i got the slightest twinge of pain, it just served to confirm my paranoia that I was going down that familiar diseased road.
On the whole I had nothing to base these worries on, I've been well for a good while now, other than the odd hiccup I've had minimal symptoms and have been leading a pretty 'normal' life.
I've had this procedure before so I knew what to expect, however the first time, I was in a staggering amount of pain and was desperate to finally get a cast iron diagnosis. Plus, this colonoscopy showed that my insides were so badly diseased an operation was the only option. Therefore, it was a positive thing, a 'positoscopy' if you will.
This time I had no clue what to expect and couldn't think straight.
Leading up to the procedure there is work to be done in preparation. 2days before going into hospital you should make sure you are eating a high fibre diet, the day before is for 'bowel prep' where you can only drink the lovely (disgusting) mixture used to help 'empty' your bowels. This, for me, is worse than the procedure itself! I can't drink or eat anything other than small bites or sips, so having to down 2litres of fluid, which i can only imagine has been personally squeezed from the Devil's teats, is a challenge and a half. Not including the other 2litres of clear liquid on top of that. No food for me = nausea and feeling faint.
So this morning leaving for the hospital, each time I lifted my legs they felt like lead and I was constantly on the verge of slipping into a hunger induced coma.
At the hospital it's a waiting game. A LONG waiting game. They explain what will happen, for a seasoned pro like me this is just going through the motions, then you WAIT and WAIT some more. Always take a book. I found it much more therapeutic to slip into someone's fictional world than to focus on what was happening next in my real one.
For those who don't know, a colonoscopy consists of a small camera being inserted into your back passage and around your bowel so they can get a look at your insides and take photos and biopsies to check. Like a weird internal paparazzi. It's amazing to watch on the screen - never thought i'd say that as I used to be the most squeamish person alive.
However I didn't get a free showing today as I was so tired and dizzy that as soon as they popped the oxygen mask on my face and drugs in my arm I was out cold. The professor who carried out the exam said this time it's much quicker as due to my previous op I have less bowel to get round! Makes sense I suppose, and also a big relief. As I was out I didn't feel a thing. The drugs you are given have a 'hypnotic' effect meaning you forget everything. When I awoke I was given some much needed tea and toast. YUM.
The professor told me the results are great - there is no 'active' disease in my bowel. Best result I could have hoped for! So over the moon I cant describe it.
It doesn't mean I am cured of course, I still have the disease itself - just for now I can wallow in the knowledge that my bowels are on their best behaviour. Nothing has spread and I am immensely grateful for that.
If you are going for this procedure, please bear in mind, it's nothing like the horror stories people who need shot tell you. It's a very simple and surprisingly comfortable few minutes in your life that in some cases can be vital to be able to give you the best life possible. I'm so happy its over with. I feel like I've taken back the reigns on a diseased horse that was getting out of control. Now it's tamed I have to take care of it as best I can so it serves me well in all our future adventures together.
Love, K

Tuesday, 14 February 2012

Heart Of Crohn

A big issue for the majority of Crohnie's are how they cope with relationships and the disease.
More specifically, intimacy, and how to adapt to having a different set of things to think about where the bedroom is concerned.
I'm not going to go into any detail about my own bedroom antics, as even in his advancing years, there is still a chance my Dad will learn how to work a computer. If that day comes he does not want/need to read about his only daughter doing anything riskier than hand holding.
My Dad aside though, it hadn't really occurred to me just how much of a difference being diagnosed with Crohn's would make to my own relationship. There was a whole other selection box of worries (for me anyway) - would he want to stick around? How would I adapt if I ended up with a bag? Would I ever be physically attractive to him again? Would I even have the confidence to show anything more than an ankle to anyone, ever, again?
Yes all very dramatic, but all genuine fears and thoughts that were going through my head pretty much constantly after my diagnosis.
My beloved is incredibly important to me. The idea that this disease could cause problems for us was a horrendous thought. This never even occurred to him, he says it was just another thing we would deal with and get through.
He is a lot more tolerant and understanding of my disease than I am. That may sound obvious - I'm coping with it, not him, but we are BOTH living with it. Day in and day out. He tells me most of the time I need to allow myself to get used to my new life, not to be hard on myself for struggling with things I used to do with ease. Not to get annoyed at myself when my body just doesn't play ball.
Everyone is different, and everyone has different types of Crohn's. Therefore what works for some won't necessarily work for others. Learning to accept your new body and new life with the disease is important for everyone though. The disease is relentless, at times can really get you down, but always trying to remember your life 'before Crohn's' is so important. It's essential not to lose sight of who you were before and who you still are.
He, through some wonderful hiatus of rational thought, fell in love with me. This happened pre-disease, and wonderfully, he still loves me now, Crohn's and all. Love is enduring, and like Crohn's relentless. It doesn't quit if you are having a bad day, or are shattered, or spending 2hours solid on the loo.
Love can't change me having Crohn's, but it can help to soothe a worried mind, ease an aching body and make you feel like you have absolutely everything to be grateful for.
I think having Crohn's has helped me to see just how important the love of him, my friends and family is to me, and how important it is to always remind them of that fact. A lot. To the point where it becomes a bit weird and creepy and uncomfortable and I hold them all a little too long and a little too tight and receive yet ANOTHER restraining order. You guys!

Wednesday, 8 February 2012

The Crohnic Boom

Due to my condition (at least I think that's the reason..), lots of people talk to me about what happens at their rear end.
It's like I've opened up a can of worms in being vocal about my disease, and now that the floodgates have opened, I seem to spend chunks of most days trying to establish what may be causing people's toilet troubles.
Having Crohn's in no way makes me an expert on these matters, however it gives me a damn sight more knowledge than I probably ever would have liked.
I've always hated talking about anything to do with bowel movements. The thought of actually passing wind and someone else having the misfortune to hear it, well that didn't even bear thinking about.
I still don't favour 'farting' in public. Who does? (Answer: 99.9% of men). I don't even like the word 'fart', or 'pump' or anything else related to it. Basically I'm a backside-prude.
I feel quite happy now though, that people want to tell me about their own issues. Although could you wait until after I've eaten my lunch? Thanks.
Its nice to think of yourself as a person someone can talk to openly, someone they think of when they have an issue most people would shy away from talking about.
The thing is, everyone does it. Everyone HAS to do it or they would surely become a big bouncy ball of gas and yukky stuff that no one wants to deal with.
The doctors and nurses who want to help you need to know about your bum-stuff, thats why they fire questions at you about your stools; describe it: shape? size? texture? nationality? - so if you don't try and get over your beetroot faced embarrassment they won't be able to help you the best they can.
So, if like me, you struggle to chat about your cheeks, or rant about your rear end, please at least try. Realise that it's HUMAN NATURE and nothing the person sitting next to you probably hasn't experienced themselves in the privacy of their own bathroom.
I'm a lot happier in sharing now, possibly a little too much at times.. And would encourage everyone to do the same.
Just pick your moments; mealtimes are a no-no, as are weddings, funerals and first dates. After that, blether to your arses content ;)

Saturday, 4 February 2012

Don't Take That Crohn With Me..

You may or may not know this, but I suffer from Crohn's Disease. I have done (officially) for around 2 years now. 
My mum is aware of this too, in sometimes more detail than she would probably like, and therefore tells her friends and customers about me and how I am doing. 
Whilst at her work recently, my mum was chatting to a client who happened to enquire as to how I was keeping. She filled her in on my situation, thanking her for asking, and explained that she, herself had had a stressful time over the past few months in worrying about me. Rather than merely sympathise with my mum and offer her a friendly ear (like any NORMAL person would), this woman preceded to say; "You must wonder what you've done wrong". 
When she relayed this story to me I was livid! My mum had been quite taken aback by this little nugget and was upset. It got her pondering on whether or not my health issues were somehow of her or my dad's doing. Crohn's is not hereditary. Neither my mum nor my dad have it, and as far as we are aware no one in our dysfunctional family tree has ever suffered from it either. So it's definitely no one's 'fault' I have Crohn's - in fact as it stands no one even knows what causes people to have the disease in the first place. 
Now if I could turn back time, I'd go with my mum to her work that day and explain calmly and concisely to that 'lady' that she needs to take some time to consider the words that come out of her mouth before opening her geriatric lips, completely mortifying my mum in the process no doubt. But as I am not Cher, I have to silently seethe and try to shake the image of me smacking the old dear across the face with her own Werther's Originals. Not at all constructive and a terrible waste of Werther's Originals. 
Now I don't wish to repeat myself, as i've blogged before about the ignorance of some people when it comes to my condition, but it still never ceases to amaze me that some just do not know when to zip it. 
If you are completely unknowledgeable about Crohn's and all it entails, then ask me. I'll be more than happy to regale you with tales of intimate encounters with the porcelain, or how every time I eat or drink my stomach rumbles like there's an oncoming avalanche. 
However if you think YOU are going to tell ME what I am suffering from, or in some way belittle my illness or how it affects my family and friends, then you better watch your back cos your face will soon be bruised by oncoming toffees.
I'm really sick of making excuses for myself, or trying to spare everyone else's feelings when it comes to my Crohn's. It seems there are a lot of people out there who are completely unwilling to discuss anything relating to the disease but are happy to share their misguided opinions and judgements with anyone willing to listen! 
Other's dont want to think about the fact that I have a scar as it offends their delicate sensibilities. I have a big beast of a scar from where I had life-saving surgery - Heaven forbid these people should catch a glimpse of it! They would surely turn to dust?!
The thing is, I'm not apologising anymore, I'm not prepared to apologise for something I have zero control over. Something myself and my loved one's have to deal with day in day out. If that offends you then you know where you can stick your Werther's Originals. 
Preferably in my handbag, I'm partial to a toffee, thanks x