Crohnological Order

Dog With A Crohn

2012-02-27T15:19:00.001-08:00

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

Crohn With The Wind

2012-02-22T12:26:00.001-08:00

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

Heart Of Crohn

2012-02-14T10:54:00.001-08:00

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!

The Crohnic Boom

2012-02-08T12:27:00.001-08:00

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 ;)

Don't Take That Crohn With Me..

2012-02-04T11:23:00.000-08:00

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

Not Your Stepping Crohn

2012-01-22T06:47:00.000-08:00

Do you want to know what I hate? And I do it too, daily i'd say. I'm talking, of course, about lying. Telling porkies, fibbing, whatever you want to call it. It all amounts to the same thing.
I lie most days about my illness. I say 'I'm fine' or that I'm 'feeling much better' and even 'I'm great!' - when most days these replies couldn't be further from the truth. I have no idea why I do this. Perhaps to spare myself (and others) from going on endlessly about my various health woes, or to avoid having to focus on the negative and pretend my fibs are actually true?
Lying is something everyone is guilty of. As my favourite (not-real) doctor, Gregory House once said, "Everybody Lies". And he's a doctor so he should know. People lie everyday, little ones, big ones, some lie about having big ones when they have little ones.. Its the circle of lies.
Lying is a trait learned from a very young age. As a child baby learns if he cries Mum will come and give him the attention he craves, cuddle him or feed him. And thus the little liar gets his Rusk. Probably wasn't even hungry. Liar. People in adult-hood tell these lies for many reasons - it could be a 'little white lie' to spare someone's feelings; ("Of course you look gorgeous in that pink velour tracksuit darling! It brings out your eyes"), or for more sinister reasons; ("I have absolutely no idea where my wife is or how this bloodied knife ended up in my hand, Officer").
I've often lied to doctors and nurses about how I'm feeling - I don't want to complain or be seen to be a nuisance. Incredibly daft. They NEED to know how I am in order to be remotely able to make me feel better. Who does that lie I'm telling help? Not the doctor, and certainly not me. Crohn's is an incredibly tricky disease to pin down. It took years to establish what was wrong with me. It's also a challenge to treat, finding the right treatment can be a minefield. That's why it is so important to be honest with everyone from the word go. Get into detail with the doctors, don't be embarrassed, explain as best you can exactly how you feel, what affect it is having on you and don't leave anything out. It doesn't make you sound like a hypochondriac (unless of course you were fibbing about being ill in the first place) - it makes it 10 times easier for them to build up a profile of what's causing you the problem.
Lying is bad for you. Pinnochio learns this gem the hard way. My hooter is substantial enough as it is - can you IMAGINE if that fairy tale were actually true? I'd require a shopping trolley to transport my beak around with me. "Liar Liar Pants on Fire" is another childhood favourite, indoctrination into why lying is bad from a young age sprinkled with mild bullying. Having been brought up a Catholic, its deeply ingrained in me that I feel I should do 10 Hail Mary's every-time I say i've taken the bin out when truthfully i've forgotten (again).
The bottom line, and with Crohn's there's always a bottom-line, is that you want to get better, yes? So start by telling the truth. Don't hold back and let the people in the know help you. As for fibbing to my family and friends about my illness, I'm still trying to get better at that myself. Not an excuse of course, I know the areas I need to work on and i'll start by repeating my Hail Mary's after this is typed up. Would I lie to you?

Into The Danger Crohn

2012-01-20T07:19:00.001-08:00

I've never considered myself to be someone who suffers from depression. I often suffer from bouts where I'd say I feel 'blue' and fed up and that I'd like to just curl up until it passes and I become remotely pleasant to be around again. But not depressed.
Depression is an illness. One of the worst you can suffer from. I've never thought these bouts of mine are significant enough to be labelled as such, it seems churlish of me to compare my 'mood swings' with having to live with the burden of depression. It just doesn't tally in my head, doesn't seem 'important' enough. Therefore as I can offer no logical explanation for feeling this way it's best just to keep it to myself until I 'snap out of it', right? WRONG. This is the worst thing I, or anyone could do.
Talking helps. I truly believe that. You don't have to try and explain what's going on in your inner psyche - but you could try to get across how it makes you feel, how it's effecting your life and at times just how completely and utterly alone you feel.
Depression brought on by Crohn's is much more common than people may think. The thing is, Crohn's as a disease is so uncomfortable and embarrassing to talk about that when you combine that with feelings of depression you have one massive melting pot of misery that not many people on the outside are able to stir. It's relentless.

As I am limited in my own personal experience of this issue, I approached some of my fellow Crohn's sufferers. I was very pleased to receive so many replies from people of all ages sharing their stories - but was saddened to hear the extent of their experiences, from mild bouts of depression to much more severe.
So what causes someone suffering from Crohn's to feel so helpless that the only way out is to shut themselves out from the world, or worse, end it all?
Above all Crohn's is incurable. INCURABLE. That is an easy word to say, easy to write - but actually living with that knowledge is a whole other story. The idea that if you are in pain now, if you can't eat now, if you are becoming BFF's with the toilet, you still will be when you are making your way to the loo in a zimmer. Of course that's not necessarily true, many patients can go years without ever experiencing another symptom, but in the majority of cases people will be living with this disease until they are living no more. What a horrible thought. Depressing even. Get the general idea yet?
Many of the wonderful people I heard from also mentioned the more unspoken issues that go hand in bowel with Crohn's. Scars from surgery that have permanently changed their bodies, having to adapt to a colostomy for months/years/life, the affect the disease has on personality and how they are viewed by friends, family and the rest of the world amongst others.
A major worry was how having the disease would effect relationships, romantic or otherwise. People already with a partner; why would he/she want to hang around now? And the other side of the coin, singletons; who will want to become involved with me now? All issues surrounding relationships play on the mind, from the technical aspects of how to cope with being intimate with someone with a bag, to the potential 'burden' of having to live with someone who's sick and always will be.
Another issue with Crohn's can be the loneliness of spending time in hospital and being unsure what the future holds. Feeling you are on medication and it's just not having an effect on your symptoms can also bring your mood down to an all time low. Depressing eh?

So, on the positive side, all the Crohnie's I heard from could also thankfully share what has led to them feeling better. Common theories to help combat depression include, starting a hobby: something to allow your mind to focus on something else, doing regular exercise: healthy body - healthy mind?, and setting aside time to do things that are pleasure-able: release those happy hormones!
All valid I'm sure, but the main one everyone shared was how important it is to talk to someone. Anyone. Tell your friends and family how you are feeling. Don't assume they won't understand or will judge you - they may surprise you. And if you feel it's too hard or you don't want to 'burden' them there are always others out there willing to listen. There is a great website called www.blackdogtribe.com which offers an amazing network of support from people all over the world.
People who are on the outside could be more aware of just how deeply depression can affect the lives of those they love. This is not something someone will 'snap out of' and cannot be 'cured' overnight - it's a disease, an illness that needs time, patience and understanding to overcome. Look for the possible signs; becoming withdrawn, reclusive, quiet or anxious. If you suspect someone you care about is struggling, just ask, make it clear you are there and will be if they need you- you never know the response you might get, or how much of an impact you might've just made on their life.

As for me, I think for now my loo roll is still half full. But if that changes I hope I'll have the confidence to tell someone I'm struggling. x

Crohn In 60 Seconds

2012-01-11T11:42:00.001-08:00

Women are renowned for playing down illness. From the extreme to the common cold, we generally 'just get on with it'. I'm trying desperately not to be sexist and generalist here as I'm sure there are lots of men who are the same, I just haven't really come across any yet..;) (obviously my beloved is exempt from any such comments as I quite like being part of a couple..)
Take that recent terrible Winter-themed 'Boots' advert, with the two actresses who have to portray having colds. They bump into each other in the street, snuffling and speaking nasally as they relay lists of the mountain of jobs and chores they have to do whilst they sympathise with one another about their prospective husbands having a dose of man-flu. Poor guys :( They should think themselves lucky they have such Wonder women to look after them while they are poorly. *
I hate this advert on so many levels. It's not funny.
Neither of them pull off a convincing 'cold'.
If you have so much to do, get to it!! No time to stand around chatting sister!
They talk of their men as though they are incoherent children - is that attractive to you? A man wallowing in his own self pity, leaving you to cope with everything including the kitchen sink while you are also laden with the cold? No, didn't think so. File for divorce now and get out while you can.

Anyway, got slightly sidetracked there.. What I wanted to talk about was the general consensus to just carry on regardless. I've learned this from my mum, who in turn adopted this from my gran. My mum has never been one to tolerate illness. She is sympathetic and was devastated when I became sick, don't get me wrong, but on the whole she is from the school of just shake yourself down and get on with it.
She kept an operation to herself once, went into hospital, had procedure and not a soul knew until months later. Unbelievable.
There is a lot to be said for being brave. It's important to have a little bit of that in you, you may need it to steel yourself for whatever your body throws at you. There is a fine line though between being brave and coping with everything on your own. Essentially, I know that if I had no other choice and absolutely had to deal with this disease on my own I could cope. Wouldn't stop me from craving someone to talk to about it and for someone to give me a cuddle and say those magical words "Everything will be ok." - means a lot even when you probably don't believe it for a second.
I'm ashamed to admit I've lied to doctors and nurses about the extent of my illness. I think this has a lot to do with the way I've been brought up to look at sickness, combined with the loneliness of spending time in hospital. I lied I was ready to leave after my operation. I lied I'd managed to go to the toilet when I hadn't. I was desperate to get home I felt a little porkie didn't matter - it did matter - when I got home and went to the toilet I thought I was going to die the pain was so incredible. I'd left a place where I had all the medication and care I needed to get through that, to come home with a couple of Tramadol and Paracetamol and a frantic boyfriend who couldn't do anything but pace up and down outside the bathroom calling in 'Are you ok?' at regular intervals.
That was stupid. I've done the same thing during previous visits to the hospital too. I've said I'm feeling better than I am because I couldn't handle being in those places any longer than I had to. I would never do that again. I now know I have to be patient (excuse the pun), I have to remember it may take some time for the doctor to get to me or for the nurse to answer my buzzer, but they WILL see me and they WILL come, and eventually, they WILL make me feel better.
It took my wonderful consultant almost a year to finally establish there was a major issue as I just wouldn't talk to her - she had to prise everything out of me, which she later told me in no uncertain terms was incredibly irritating, she knew I was ill but couldn't prove it if I wouldn't speak up about my symptoms.
It's frustrating when you want to be better and want to imagine for a split second you are - deep down you know you are sick and that you are in exactly the right place - so try to remember at all times to listen to your gut. For Crohnie's there couldn't possibly be better advice ;)

* (If you live outside the UK sorry for this reference - Google it! In fact don't, it's awful).

"My rear is in uproar"

2012-01-06T14:49:00.001-08:00

As it's coming up to the anniversary of my first (and hopefully last) Crohn's surgery, I thought I would look back at the year prior to my op to see what kind of difference it has made to my life and how I've adapted to living with Crohn's. Anniversary sounds a bit morbid, but i see it as a happy time, a time to celebrate how much has changed in the past 12months.
I've kept a diary since I was around 12 years old, and therefore I thought what better reference material to use to trace my year BC (Before Crohn's)? So as I've taken some quotes directly from my diary scrawlings, please forgive any rambling, I've tried to cut them short! I've used the period from March 2010 (when i started to notice symptoms) through to July 2010 (when I was at my worst and diagnosed with Crohn's) - this post will cover the first part of the year. It was quite strangely upsetting to read over my entries again as it's been easy to forget just how terrible a time it was, anyway here goes.

Monday 15th March 2010-
"..got cortisone injection in my knee today - absolutely awful- was painful and very strange sensation, uncomfortable and unpleasant, had to cling to the chair due to the pain and felt dizzy. Woke up having passed out and thrown up, I'd been held down as I was flaying around on the bed. Mortified.."

This was written when I started my treatment for my arthritis. This should've been the first real sign something was more seriously wrong, joint pain and arthritis is common in Crohn's patients and I'd suffered with since I was around 25. I still cringe thinking about the state I was in in that room.

Friday 16th April 2010-
"..keep getting this really weird pain in my chest and stomach (on left side) which feels like severe trapped wind- really sore though and seems to be worse every time I eat or drink something. Very annoying"

So I guess this is when it started for real - this pain went on for weeks before I visited the doctor, I was embarrassed I'd be turned away for having something minor like wind. Combination of stupidity and previous experiences of being shunned at the surgery.

Saturday 17th April 2010-
"..feeling crap again tonight- still got that weird pain- think it's heartburn - took a Gaviscon so will see if that helps.."

Aww! How cute am I?! Actually burst out laughing reading this, knowing what I know now it seems so naive to think popping a heartburn pill would make a jot of a difference! You have an incurable disease love, Gaviscon won't help you now!

Thursday 22nd April 2010-
"Managed to get up on time today - off to work with the same agonising spasms in my stomach, back and chest now- horrendous"

I was so tired that I'd started sleeping though my alarm and was rushing to get in on time. Was waking up through the night in pain that took hours to dissipate. Bags under my eyes like creepy old caves.

Tuesday 4th May 2010-
"felt sick on way home which led to an awful night. Queasy all evening - couldn't eat and has an absolutely HELLISH headache- then from 8ish was sick constantly till late, horrid, worst I've felt in a longtime, plus headache was unbearable"

Symptoms starting to worsen here- I was clearly in the grip of a flare-up but had no clue. Feel like I want to mop my own past fevered brow reading these. Horrible to recall, keep thinking how hard it must've been for my parents to see me like this, having no explanation and feeling helpless.

Friday 7th May 2010-
"..just had dinner and in lots of pain- feels like it was last month- can't see antibiotics doing the trick to be honest. Dreading work, so worried I'll need more time off.."

Starting to really stress here about what effect this was having on my work and life in general. I was off sick a lot and as I could never give a cast iron reason felt I was being doubted. Pushed myself to pull full shifts when I really should've been in hospital.

Friday 21st May 2010-
"not feeling too good again this morning, in fact mum had to put my shoes on for me as the pain was so bad I couldn't bend over. Walk to work=horrendous - took baby steps as in AGONY. Got to work (eventually) and pain so bad I was in tears"

I remember this day vividly, got sent home and straight to A&E. I remember having to walk so slowly as every step I took was killing me. No idea what I was thinking even attempting to go in, then again I also remember the stress of worrying I'd lose my job. At hospital the surgeon saw me;

"..he was rude and abrupt and told me they won't be ruling out surgery but I've now an abscess which will make operating more difficult, my appendix is the size of a pinkie nail and all my organs have moved to protect it, it would be hard to go in and would leave me in 'an awful mess'.."

This was when they thought I had appendicitis. I didn't. Thank-fully they didn't whip out my appendix and carried out more tests as I got taken into hospital more and more. This surgeon made me feel like I was wasting his time. I am the patient. I do not know what is wrong with me - that's why I am here. I'm the code, you are the code breaker - don't tell me I'm too complicated a combination to crack!
After this lovely consultation I was monitored for a few days, then given more drugs and sent home.

Sunday 6th June 2010-
"..it's 11.15pm and I'm in total agony - stomach is so painful - in fact it's my stomach, ribs, chest, making it's way round my back too. AGONY. gets 10times worse at night when I try to relax - it's almost unbearable, makes me cry and can hardly breathe.."

Can again remember this quite vividly, the pain was so brutal I was sobbing myself to sleep. No painkillers could touch it and I felt there was nothing being done to help. Vicious circle of being punted in and out of hospital - hated the thought of being taken in again.

Friday 25th June 2010-
"..still feel like i need shot.. Aching all over. Doesn't help rushing to toilet CONSTANTLY - my rear is in up-roar and I look and feel like shit ALL THE TIME"

Obviously having an ugly-feeling-sorry-for-myself day here. The relentlessness of the disease can be such that you sometimes feel nothing goes right - and if something is going well some other thing has to go the other way to restore your natural feeling-like-crap balance.

Saturday 26th June 2010-
"..feel awful, terrible toilet trauma - my backside is in agony - bleeding and torn and sore- never gets a chance to heal. Constant chills too.."

Another one of the sexier side effects of Crohn's - it's obvious when you think about (but most people don't) - how can you go to the loo that many times a day without it having an effect on your rear?

Friday 2nd July 2010-
"..I'm in constant discomfort.."

Speaks for itself really.

Friday 23rd July 2010-
"..so it's most likely Crohn's - this'll be confirmed with a colonoscopy later. I've anaemia and low iron levels. J came to see me in the ward tonight. He said 'its hard to say goodbye but it's fu**ing horrible walking away from you, it's awful, unnatural' - I love him."

So girls and boys what have we learned from my year of woes?
Well I'd say, how important it is to trust your gut (literally in Crohn's cases) - if you think there is something wrong with your body you are probably right - you live in it after all.
Don't push yourself, listen when your body tells you to slow down, or else it'll stop you for good without giving you a say in the matter.
Don't sit back and let it happen to you - find out everything you can about your condition.
Oh and that I LOVE to use caps lock for emphasis. I REALLY DO.

Hair Today, Crohn's Tomorrow

2012-01-01T14:36:00.001-08:00

Amongst the many, MANY, lovely symptoms of Crohn's Disease, are two that I have found myself suffering from recently. Hair-loss and pain and swelling in the mouth.
When I was very ill last year, prior to my operation, I suffered from quite drastic hair-loss. I found it almost impossible to wash my hair without clumps of my locks coming out in my hands or clogging up the plug-hole.
Myself, my parents and my siblings have always had thick and kinky hair, so losing it seeing become so thin and feeble upset me quite a bit. The physical signs of my illness tended to affect me more - not because I'm particularly vain, but because it made it visible - I could no longer try to hide what was wrong from the rest of the world.
The hair-loss in Crohn's patients can be caused by many factors - steroids, having anaemia, being on azathioprine and just generally feeling unwell. All of which I was in the midst of last year.
My hair has been back to it's glossy best in the last few months following my surgery, making me and my plug-hole happier. However, during a flare-up - mild or otherwise - it tends to start all over again, and as yet I haven't found anything to help my cause. My Aunt got me some fancy hair products for my Christmas, shampoo and conditioners and special 'serums', the whole thing. They smell like I imagine God might. Heavenly. They leave me feeling like I've just stepped out of a salon, but still my hair eventually goes greasy, lank and thin no matter what miracle creams I slather onto my cranium. I suppose it's just something I'll have to get used to. It's just depressing to run your fingers through your hair and end up with enough left in your hand to use as a wig for a small child. Now there's an idea... Send your bald babies to me! (on second thoughts scrap that- I'm going a wee bit insane now).
So hair aside, (or should that be a-side-shed?), the other issue I wanted to talk about was 'oral Crohn's'. Stop giggling at the back because I said 'oral'! Grow UP!
As Crohn's is a disease which can effect every part of the body, from head to toe, it is very common to hear the disease can be found in the mouth too. Some of the most unpleasant issues range from very poor gums, to inflamed taste-buds, to ulcers and sores on the tongue, and everything else you can think of in-between. It's common to suffer from thrush on the tongue and shooting pains in the mouth, thankfully neither of which I've had the displeasure of encountering (as yet).
I suffer regularly from poor gums, numbness of the lips and pain in the mouth when I eat or drink. Sometimes my gums feel as though on fire and even the act of touching my teeth or gums with my tongue is incredibly painful.
Again all of the aforementioned symptoms could be put down to different things for different people. After all, each patient is unique and is affected by the disease in a slightly different way. But for me, medications and drugs only serve to accentuate the symptoms I already have - I just put it down to having Crohn's - which in itself is a rotten conclusion as it again boils down to there being sweet FA I can do about it.
But that's life, and I can cope with a sore mouth and crap hair as it's nothing really when you take a step back and look at the bigger picture. I have to appreciate and remember it will never be an easy ride but as I have so much to be thankful for I can live without looking like Rapunzel or one of the Osmonds.

It's a new day, it's a new year, and I'm feeling GOOD.
Happy New Year x

(Non-Hospital A)ward!

2011-12-29T05:38:00.000-08:00

HIYA! Just a quickie to say a HUGE thank-you to any of you who have nominated me for this so far. There are only 2 (and a half) days left to vote in the WEGO Health Health Activist Awards! Either for me or the other wonderful 'Activists' in the running. DO IT NOW!
I will pay you in eternal adoration and possibly biscuits x

http://info.wegohealth.com/ha-rookie-2011
(Disclaimer; there will be no biscuits) x

Crohn Lang Syne

2011-12-27T05:28:00.001-08:00

Happy Christmas! Hope you all had a wonderful festive period and are looking forward to frivolity ensuing at New Year. If you still have a food/drink hangover then take two Paracetamol and call me in the morning.
Most people around this time of year start to think about making their New Years resolutions. I did this regularly when I was younger, really only because it seemed traditional and was what everyone else did.
Later I realised that all making these resolutions did was frustrate or depress me as I never seemed to achieve any of them. No matter how big or small, most people, like myself, start the year with the best of intentions but rarely stick it out past Valentines Day. Suppose that's why gym memberships soar in Jan and Feb..
I've realised as I can't control how I will feel from one day to the next, it's very hard to plan much further than a few hours in advance. No point in making bold plans for myself that I don't know if I'll be physically able to keep. Or is there? Is it better to make these plans to give myself something to focus on and aim for when things get hard?
I'm not sure. I'm still coming to terms with my illness myself, it's now almost a year since my operation and I'm now trying to settle into my life with Crohn's. Quite an adjustment in itself.
I've resolved to start a food diary to keep a log of everything I eat and drink and what effects they have on my delicate insides. This will hopefully give me a better idea (in general) of what foods to steer clear of, although I realise this will probably take years.
Other than that I have a lovely friend who has offered to start teaching me how to drive! YIKES. At 28 I think it's about time, have never really been interested before, but it's practical and sensible - all these trips back and forward to hospitals will be so much easier not having to rely on public transport or family and friends. If I do manage to pass, that means no more bus tweets! Sad times :(
Oh and I also want a holiday! Haven't left Scotland for over 2years now. A spot of sunshine always makes me feel better, and a tan is always much nicer than my traditional milk-bottle-white skin.
These are not resolutions- just a few things I'd like to do - maybe not this year for sure, but soon I hope. I'm not setting myself any major goals for now until i am a bit more confident coping with my Crohn's. If that day ever comes! In the meantime all I really want to achieve over the next 12months (and beyond) is to enjoy life. Make the most of the positives in my life and focus on those. Hiding away from the world never helped anyone, I want to show the world how well I am coping and how important it is to have some fun. So if the world doesn't indeed come to an abrupt end, I aim to have a fun-filled 2012. I hope you all resolve to do the same :)
K x

Merry Crohnsmas & A Happy New Rear!

2011-12-17T12:11:00.001-08:00

I love Christmas. I love the snow and the lights, the gift giving and devouring enough food to feed a small country. I love the build up to it all and spending time with the people I love.
Last year wasn't my best Christmas to date. I was in the full force of a flare-up and was only weeks away from my operation. The thought of having major surgery in a matter of days was always in my thoughts. Constant pain meant I was on lots of pain relief and medication and couldn't drink. Not the end of the world I know, but to lots of Scots it's a part of that clink-your-glasses-together-with-a-wee-dram tradition that I love.
I was also on a liquid only diet (not of the wee dram kind unfortunately) and took Christmas day 'off' from my delicious (vile) prescribed shakes to gorge myself. Felt incredibly guilty about this but the thought of sitting around the table while everyone tucked into turkey with all the trimmings would have reduced me to hunger induced tears, not to mention making the rest of the family feel awful. So I tucked in - but much to my dismay I could hardly eat anything anyway. I gave it a good old college try but the end score was always going to be Crohns - 1 - Kath - Nil.
Feeling this rotten all day made it hard to relax and enjoy myself. Even the act of hugging my loved ones was incredibly painful, I could barely touch myself around the tum area let alone have under 10's run at me with the force of a steam train.

I hope that this year ahead is going to be a better one. My beloved and I are spending Christmas Day with my parents then his on Boxing Day. I've felt all the preparation to be quite stressful this year so have decided Christmas 2012 will not be the same - I'll budget better and try not to go as overboard as I always do on the gifts. I say this every year but now, other than not leaving myself penniless, I have a solid reason to avoid stress. Christmas is supposed to be a joyous occasion and the less stress I bring on myself the better. For my health and my mental health!

Crohn's is an awful disease and can really bring you down. I liken it to a spoilt brat of a child, constantly not finishing meals and relentless attention seeking, if it doesn't get what it wants then comes the nipping and punching and whining. If only I could have mines adopted, although I doubt anyone would volunteer :(
It's horrible and depressing at times but my advice to anyone in the grip of Crohn's (or anything really making you feel below par) is simply please, PLEASE, don't let it win. Keep on trucking and eventually there will be a light at the end of the road. It won't disappear or get easier as such, but you will get stronger and learn to adapt. This in itself will be a revelation. A little Christmas miracle if you will.

Finally, humour me while I become the Queen of Cheese for a few moments.. I want to say Thank-you so much to anyone who has taken the time to read my posts this year, you really have no idea what it means. All the support I've received since I started writing has been phenomenal and I hope to continue blabbing on this way into 2012 and beyond!

Merry Christmas Everyone.
All my love, Your friendly neighbourhood Crohnie x

Crohnly In Dreams

2011-12-13T13:30:00.001-08:00

One of the most common (and thankfully mildest) symptoms of Crohn's, is tiredness.
For me, I've found since my operation almost a year ago, I've been getting steadily more and more shattered. I know this is far from a major symptom, but being knackered all the time is quite a surprisingly difficult issue to deal with. Tiredness leads to irritability, loss of appetite, lack of concentration, headaches and general fatigue - causing the most inane of activity to become a full on challenge.
I've found work to be a chore recently and keeping my mind on the job more difficult than before. I find my mind wandering and my eyelids drooping most of the day and at times feel I'm struggling to concentrate.
Nothing seems to help either, multi-vitamins are no use, my iron levels are usually low but nothing too drastic, and having been recently tested for b12, I've been advised there are no major issues there either. On paper all is well. So why am I still constantly counting those sheep?
The feeling I have is akin to those tipsy moments after a few too many glasses of vino. I feel wobbly and slightly dizzy, heaviness in the eyes, and at times like the room is spinning. Walking short distances is on the whole a struggle too- leading to breathlessness and at times nausea. Sometimes I feel as though I can't take things in or concentrate on a conversation for longer than a few moments.
During a Crohn's flare this can get worse. As the body struggles to fight the disease all energy is being sapped to the max, leaving the resulting sufferer a limp rag.
Side effects to medication can also cause fatigue and switching medication can help in these cases.
For me it would seem anaemia and nutritional deficiencies are leaving me fatigued. I've been told to ensure I get 'adequate sleep' and eat 'healthy foods' - most healthy foods play havoc with my washing machine tum and the sleep I get is usually more than adequate but still leaves me feeling like a complete weakling. Sleep can also be a wily character to keep a hold of when my nights/mornings are spent running back and forward to the ladies room..
If feeling tired is the starting block then the finish line is that cranium finally hitting the pillow. When tiredness strikes all I can think about is the sweet relief that will come when my eyes finally comfortably close and drift of to sweet, sweet snooze-ville. This can be a challenge in itself at times as, depending on the level of pain in my tum or bum it can be really uncomfortable just trying to relax. I'm still very tender at my scar site too so finding the correct lying position can take it's time. But when I get there...
Let's just say those sheep best have their running shoes on.. Zzzz..

Crohn & Groan

2011-12-11T14:03:00.001-08:00

I get sick of being sick. This is a phrase often quoted by a lot of Crohnies, and people in general who suffer from a chronic or long term illness.
That's because it brings you down, makes you feel depressed and blue and makes you think that it shouldn't be this much of a struggle just to get through a day. Why is it?
This is how I feel most days. That alone will probably upset the people who love and care about me but it's true. I never intend to upset anyone with my posts, I like to try my best to keep them positive and put a humorous slant on my condition.
But I also don't want to sugar-coat Crohns. It's a terribly debilitating disease at times. It gets in the way of the simplest of actions, from eating a meal to walking to the shops. I am lucky enough to be well enough to have a full time job, but most days I find even doing a full shift incredibly tiring, I feel utterly drained and like I could sleep for a week at the end of it. Then it hits that I have to squeeze in some sleep then do it all over again in a few hours time.
Crohns is utterly and completely relentless. It doesn't care if you are suffering elsewhere in your life, if you are stressed at work, having problems at home or grieving for a loved one- it doesn't stop, it cant. It's with you for life so it makes it's presence felt as often as is humanly possible. Its that black sock you accidentally put in with the White wash, that little brother who won't stop repeating your sentences in a moronic take-off of your voice, it's that umbrella that won't STOP TURNING INSIDE OUT. For fear of drifting into Alanis Morrisette territory I'll leave it there. But I hope you get that what I mean is that it's basically an annoying little bastard that will wind you up endlessly until you snap.
I feel a lot that I am a burden on those I love. This is in my head - my partner has never made me feel this way, neither have my family or friends, but however lovely and accommodating of Crohns they are, it still doesn't seem to change the way I feel. I get constantly annoyed with myself at not being able to do what I used to. I hate having to say no to things and let people down and like a devil on my shoulder the thoughts always in the back of my mind are if he will eventually get fed up and leave or if I will push everyone away by not opening up. I don't moan - well a little but I don't wax lyrical about how I feel as much as I guess I should. How do I expect anyone to understand if I don't talk? But as much as I want people to hug me and tell me it'll be alright it's pointless as I know it won't. I know there is worse to come and I get annoyed at anyone who tries to tell me otherwise as, 1. How do they know they haven't got it, and 2. I know better. I KNOW.
These horrible feelings pass as do the symptoms, but when you are I'm the grip of it it feels like a black fog you are trying to navigate your way through.
I know I am not depressed, I am just blue. And if blue is the colour of sadness then yellow is the opposite - happiness. As I am an expert in the colour wheel from my art college days, I know that blue mixed with yellow makes green. Green is traditionally the colour of hope, health and growth. Therefore I KNOW things will get better. Its science ;)

Bowel of Fortune!

2011-12-09T07:05:00.001-08:00

Do you have Crohns disease? Not too sure? Take this fun quiz to find out!

1. You are eating a packet of salted nuts. Do you;
A) Enjoy those bad-boys to their fullest?
B) Drink half a gallon of beer to wash them down and quench your thirst?
C) Grip your stomach in knee trembling agony and dial 999?

2. You feel the need to use the toilet. Do you;
A) Casually stroll to the nearest loo with the confidence of someone wearing a Tena?
B) Walk to the cubicle with the moves like Jagger?
C) Bolt to the nearest toilet/hole in the ground/sink/ like a bat out of HELL?

3. You hear a strange rumbling noise in the distance. Do you;
A) Prepare your surroundings for a potential Earthquake?
B) Hide Simba under the bed from an oncoming onslaught of Wildebeest?
C) Assume (correctly) it's coming from your stomach?

4. You notice a strange swelling in your stomach after meals. Do you;
A) Prepare for the arrival of a new child following the immaculate conception?
B) Wait for Greenpeace to arrive to rescue you?
C) Lie down before you fall down?

Answers;
Mostly A's ;
You are Crohn's free! Living life to the full and strutting to the toilet like it ain't no thang! You go girlfriend!

Mostly B's ;
You too are free from bowel misery! However it looks like you need to do something about your dancing ability and why do you have cuddly toys in your bedroom? Grow UP! Plus you could maybe do with losing a few pounds..

Mostly C's ;
Sorry guys! Looks like you have Crohns! You are in agony after most meals and rush to the toilet as if your life depended on it. Your tum swells up and you can't tolerate most foods. The good news is you are not carrying the new Messiah! (Or a whale) You are bad-bowel-tastic!

Crohna Lisa

2011-12-03T13:35:00.001-08:00

My boyfriend called me the Chrona Lisa the other night when I was feeling rough.
This is not in the slightest bit offensive to me, it conveys that he still thinks I'm lovely whilst i feel far from it. At least that's what I take from it. It's an affectionate way of laughing at my predicament. Makes me guffaw at the mere idea that I could look attractive when I can barely move and need to be undressed by him. Oh wait..I think I'm getting it now..
Anyway, this got me thinking a few things (mainly, I'm nicking that as my next blog title) but also how we, as a couple, cope with my disease. I've touched on this before in my blog, but now we having been living side by side with this Crohns squatter for over a year it's easier to get a better view of how we've both adapted to it.
I would say on the whole, with humour. We have a kind of Crohn's code for when we are together. These are not rules we have put in place, they've just developed over time. I'm not giving it away to all and sundry but one small example of this is one we use is when I'm spending longer than is usually considered 'normal' in the bathroom. He will shout up to ask "Are you bog-hogging baby?" to which I'll either reply "2 minutes!" which means I'm fine, or a flat and miserable sounding "yes.." which means I'll be here a while, you best find yourself something to do for the next few minutes/hours/days/weeks/millennia.
This makes me laugh every-time he says it. I don't know why, I think it just brings me back down to earth from my wallowing and makes me focus on my ridiculous situation.
One I like to use when we discuss dinner is what foods will or will not, "destroy me". This is Crohn-Code for 'if I eat that I will be bog-hogging for at least the next 5years and bloated to the size of a beached whale'. Cue there to get back round the oven and re-evaluate our supper plans.
Don't let these verbal high jinks fool you into thinking life at Casa Crohns is laugh-a-minute though. Unfortunately it's not - I still have Crohns therefore I still have the symptoms in amongst our banter. This means I still moan, and complain and have to sleep/go to the loo/lie down/have a cuddle at the drop of a hat.
There really is no way either of us could be content in living with my Crohn's if we both focused on the bad at all times. I suppose at least I'm never predictable.
Now I'm off to bog-hog for a bit, pass me War & Peace.

Play That Horn

2011-11-30T01:46:00.001-08:00

Well I have finally come to the end of my month of clogging up your Twitter timelines, Facebook walls and Blog alerts, also known as NHBPM (National Health Blog Post Month). I've really enjoyed the challenge and have done pretty well I think - used my two 'get out of post free' days and another for sickness (occupational hazard of being the patient writing a health blog).
It's been a great chance to keep the grey matter stimulated, read and share with other bloggers and take on the feedback I've received.
However, there is one last post to go and I've been dreading it for a few days now if I'm honest.. This post asks me to write about Me. More specifically what I 'love' about myself.
ARRGH. I hate this type of thing and am hopeless at talking about myself. Well that's not entirely true - hopeless at talking about the good points, my flaws I could probably fill a novel with, 3 sequels and a straight to DVD movie. (Starring Bruce Forsyth as me of course - it's the big chin). See, there I go already - I can't and never have been able to take myself seriously.
I'm an idiot. I spend the majority of my time doing and saying idiotic things then laughing at how idiotic I've been. I also apologise a lot, which drives my partner and best friend absolutely round the bend, suppose it's my way of getting the apology in in advance for fear I'll shortly say/do something stupid. That's not a bad quality I suppose, idiocy. In the mildest term of the word of course, I'm a harmless idiot.

I think I'm daft and therefore laughing at myself comes easily.
I'd say one of the things I like (can't bring myself to say 'love') is my sense of humour. I love to laugh and try to surround myself with people who share in my silliness and think i'm amusing in return. Suppose most of the ridiculous things I do or say are to release that elusive guffaw and loosen up those chuckle muscles. Of course that could be mistaken for "not 'funny haha'" which would devastate me. (not really, I'm just being an idiot again).

I'm terrible at praising myself or 'bigging myself up' as the kids allegedly say. However one of the qualities I do like about myself is how loving I am - I 'love' it, in fact. I adore my partner, family and friends and sometimes squeeze the cat so hard I fear his whiskers may fall off. This loveable me can also
at times be a terrible curse, for example when my goldfish of 12years died. I was gutted. Stared at the shelf he used to sit on for days, like a lost puppy. That little guy was irreplaceable, had survived the fun-fair, 2 cats, and my dad dropping him on the kitchen Lino several times a month. RIP Dave. Anyway, before my tears threaten to dampen the keys, I'll continue.
I care too much at times (don't even know what that means? How much is too much? Squeezing your cats whiskers off?) I often end up taking a lot of the problems of others on my shoulders. This doesn't leave much room for my own. I'm not Hulk Hogan. This can be very stressful at times but I wouldn't really have it any other way, I can't stand to see people unhappy and if even just listening helps someone I will stretch those ears out to epic proportions.

Finally, I'd have to say I like my attitude to Crohn's. It tries and tries to knock me down, but like those classic 90's Prescott-bashers 'Chumba Wumba', I get back up again. (Apologies if your not in the UK as that probably means nothing to you :) )
Crohn's is a tough, tiring, physical and mental assault course and I always did come last on sports day.
But this is one race I am determined to win. X

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

Greeting Card Post

2011-11-28T23:51:00.003-08:00

'Congratulations, you've got Crohn's!'

'You've just been diagnosed with Crohn's and right now you feel swollen,
But don't feel blue coz you've a dodgy colon!
The doctors and nurses will help you feel better,
So try not to be too much of a fretter.
It's hard when you hear this disease is for life,
But please, please do not reach for the knife.
You'll feel sick and sore and the pain may be tragic,
But some drugs today can work like pure magic!
Eating is tough and some foods are out of the question,
But if I may be so bold can Make a suggestion?
Take all advice given and don't be martyr,
Help truly is there from people much smarter.
Soon you'll feel better and learn to adapt,
When the route to your colon is more clearly mapped!
So take it easy for now, rest those weary bones,
For soon you will adapt to the wonders of Crohn's!'
x

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

Say WHAT?!

2011-11-28T00:58:00.001-08:00

There have been many, MANY, ridiculous statements made about my condition, probably too many to list on one post to be honest.
It seems a bit smug and patronising now that I have a knowledge of Crohn's to shrug these comments off as silly. Why should I judge other people for asking questions or making assumptions I might have made myself over 12months ago?
Because I have it, that's why. Therefore I can say whatever I like about my disease as I'm going through it! The bottom line for me is that I don't have a problem with people asking me about my condition, (to a point obviously) - I'd much rather that than hear you telling ME what IM dealing with, when really you have no idea.
The main example that sticks in my mind and relates to a conversation I overheard, about me, two people were having in a busy room. One of the gossipers was advising the other that, because I have Crohns, I "literally s**t all the time". Lovely. The person on the receiving end of this little nugget of information was aghast with horror. Now bear with me while I break this statement down into it's component parts.. "literally" - I 'literally' s**t all the time. Really? How do I manage to eat? And sleep? And hold down a full time job? Surely I must be surgically attached to the toilet for fear of constant accidents.
"s**t all the time" - again, 'all the time' - how do I manage to get anything done?
Anyway, I came back at this point in the conversation and calmly sat down to a stony embarrassed silence. I explained that, no, I don't..need to use the toilet all the time. I have a disease that affects my bowels and makes it difficult for me to eat and digest foods properly, meaning I sometimes spend longer than your average poo poo bear in the facilities.
My response just garnered confused glances towards one another and of course those obligatory looks of pity. The looks of pity are also a common one when talking of your disease for the first time. I don't want people to feel sorry for me, I have a condition, I'm still the same person, just minus a bit of bowel.
On the other hand because Crohns is an 'invisible disability' it can often be hard to express just how terrible you may feel to someone who sees you outwardly looking no different.
But I will end this post with another one of my favourite comments, regarding another of my health gripes, arthritis. I suffered pain in my knee to the point of struggling to walk for months and kept going back and forward to the doctor to no avail. Painkillers were given and a quick peek at the offending knee (which was seriously swollen) and I was sent hobbling on my way. Eventually, on my 6th visit to the surgery, the doctor, who'd had a quick look at my notes, and my face, (I was 25 at this point) seemed annoyed, as if I was wasting his time, again. He didn't look at my knee, told me it was a sprain, to walk if off and put some frozen peas on it. FROZEN PEAS. A few short weeks later I was diagnosed with arthritis and getting cortisone injected into my knee.
Peas be with you, Doctor x

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

Quote Unquote.

2011-11-27T07:08:00.000-08:00

Today's post asks us to fire a randomly selected word into the search engine on the WEGO Health website and choose a quote you like from the results you get to set you writing.
The search word I used was, quite appropriately, "illness" and i found this quote that caught my attention ;
'Do you 'own' your illness?'
This got me to thinking how I feel in relation to 'ownership' of my disease. Right now i'd say Crohn's is still very much in the driving seat and 'owns' me. Much as i'd like to think otherwise I think I am still pretty much ruled by my disease and allow it to get the better of me a lot of the time.
This isnt a pleasant thing to realise but i'm well aware i'm still in the very early stages of my disease and it's going to take me a long time to get a proper handle on it. I struggle to come to terms with the realization there are many things I used to be able to do that I now find increasingly difficult. This is not an easy thing to admit - really rotten to think how significantly this Crohn's malarkey will interfere in my life. The simple act of sitting down to a meal is a challenge in itself now. The meal is rarely finished and when it is I await the rumblings or pain - even if i'm fine I still assume it will come and brace myself accordingly. Then I am completely shattered. Not just that whole after dinner woozyness you sometimes get after a big Christmas dinner or feast, but absolutely floored. Could go to bed right away and probably sleep the next 24 hours. But because that is not socially acceptable (or possible - i have a full time job) I struggle to stay awake, which then makes me irritable and grumpy at the fact i'm bloated to whale-like proportions.
But this problem is a regular one and I know I will get used to it and find a happy medium at some point. I just sometimes feel the loss of control of my own body is hard to deal with. I am so tired most of the day and think about Crohn's and how I will feel pretty much everytime I eat or drink. This again, I hope, will pass in time. I try my best to remain positive and not to allow Crohn's to be 'who i am' - but I cannot deny it is now a huge part of who I will be (a horrible diseased part).
I think the important thing to remember is that control and 'ownership' are the key words. I may not be able to control what silly games my disease decides to play with me, but I can always hold on to the rule book.
The minute I give over ownership of my body I have lost - and (apart from in every sport known to man) I have never been a loser. x

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

I still Remember..

2011-11-26T08:20:00.001-08:00

I still remember being told I had Crohns Disease. I can remember it quite vividly actually. I'd just been admitted to hospital (again) with agonising abdominal pain, my partner was with me and a young trainee doctor came into my room and asked me a novels worth of medical questions. In the process, inadvertently letting slip something about the possibility of Crohns. He looked instantly embarrassed and left in a hurry.
I was a bit shell shocked. I'd gone from having appendicitis to having an incurable disease I'd never even heard of. We were both a bit panicked but tried to stay calm. I was doped up on painkillers at this point so couldn't take much in, and would explain why I remember feeling pretty laid back at the time..
An older doctor came in with the student 'let-slip' doctor and spoke to me for a few minutes. For some reason I remember him being at the other end of the room and I was paranoid and confused by this- Did he think he would catch whatever this mystery illness is that I may or may not have? Is it contagious?
He again mentioned his suspicions I may have Crohns Disease, gave a VERY brief outline as to what it is, which all went completely over my head almost instantly, as it was so baffling and quick I couldn't comprehend any other than that word "disease". I do however remember feelings of relief and even validation in amongst the confusion and nerves, that something was being done at last, and that it wasn't all in my mind and that there IS something wrong with me!
After this initial meeting however, the next few days were spent preparing me to have my appendix out, which was of course, entirely unnecessary. I felt upset and worried at the seeming lack of communication and reluctance for anyone to make a definite decision on my diagnosis. I was told constantly I'd need more tests and procedures but not why - I wanted to know what exactly they suspected or what they were trying to rule out. To be honest it's just as well the young doctor had let the Crohns theory slip, as it stuck in my mind and gave me something to cling to.
The worst part however was the hope it had been appendicitis after all. If it was I would've had my nasty appendix out and could carry on with my life as if nothing had happened. Instead I was saddled with a life-long disease with no cure.
Most of all, I remember the sheer feeling of relief that now that we knew what was wrong we could start to get it under control. I now realise that's going to be a long and arduous journey, but I'm fuelled up and ready to go.

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

Never Have I Ever..

2011-11-25T02:20:00.001-08:00

This post asks me to think about something I've never done but would like to in relation to my condition. The main one which keeps cropping up when thinking about Crohn's is one of the major gripes I have, people belittling or making light of my illness. People making ludicrous comments or using what I have as an excuse to play the hypochondriac.
I find this incredibly insulting and ignorant. I completely appreciate people who maybe have a genuine interest in Crohns and asking questions, perhaps at times too bluntly, so I bite my tongue and answer them as best I can whilst remaining relatively cheerful..
The issue I have is when people (who clearly do not have the first clue what we go through) discount any symptoms or complaints as over-reacting or exaggeration. This, in my case couldn't be further from the truth. Infact, I blame myself partly for the length of time it took to establish a diagnosis. If I had been more open and honest with the doctors from the beginning they would have had more to go on. That's a valuable lesson I've learned, in as much as I have to speak up and not worry about being judged as that is what the doctors are there for - to help make me feel better.
I think because I've been made to feel in the past that I've been perhaps going overboard when complaining of symptoms, it's taking a while to realise that I wasn't - if anything I was holding back!
But the point of this post was to explain what I NEVER do. And what I never do is speak up when I'm offended. Just silently seethe at the time then bore the boxers off my beloved later by ranting about it. I don't know if there even is a point to voicing my fury at idiotic comments? The person making the comment in the first place clearly is so insensitive that it would more than likely be irrelevant what I said in return. I would just be winding myself up more than I already do and that's just not good for my health ;) So I'm going to try and elevate myself to a whole other level and try to stop myself from getting bugged in the first place. That way Arthritis and Crohn's may break my bones but uninformed comments will never hurt me ;)

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

My Mascot

2011-11-24T04:09:00.000-08:00

My wee mascot is called the Crohn Ranger. He is a little diseased bundle of fun who loves to give your insides a good squeeze! His absolute favourite is to twist your intestines around in this grip like he's wringing out a wet dish cloth!
The Crohn Ranger is a mischievous character who loves to cause disruption and mayhem at the most inappropriate times!
Are you running late? 'Squeeze!'
Are you on a deadline at work? 'Squeeeeze!'
Are you making an attempt at a social life? 'SQUEEEZE!!'
He hates most foods and likes to remind you of any errors you may make in dietary terms. Stay away from that tasty treat!
He enjoys playing with your temperature too, twisting the heater up and down whenever he feels like it, causing you to go from sauna sweats to antarctic chills in a matter of minutes. Rascal!
The Crohn Ranger loves visiting the doctors surgery and the hospital, he'll have you back and forth like a yo yo! Just can't get enough of that hospital food! Or maybe it's the nurses? Naughty!
He is always keen to remind you he is in the driving seat and any ideas you may get otherwise will warrant a serious reminder painwise! Stay on that little guys good side whatever you do!

Essentially he's a complete bastard.

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

Health Activist Choice - 'If my Colon could talk..'

2011-11-23T04:12:00.000-08:00

I'm slowly getting to grips with the realisation that I must start 'listening' to my body. Of course with Crohn's in some cases it's almost impossible not too, mainly when my washing machine stomach is in the midst of it's full spin cycle.
Joking aside, when I say 'listen' I don't just mean the audible wonderment my insides produce, but more those certain feelings or intuitions you start to get with a longterm illness. I'm a great one for pushing things I don't have time for (like my health) to the back of the drawer, hoping above all hope it will 'sort itself out' leaving me to get on with whatever else it is I've designated more important.
Take an example from earlier this month. I took the first week of Nov off work as I had some leave to use up and thought I catch up with all the lovely people I haven't seen for ages and take in some overdue rest and relaxation. Day 1 of my 'holiday' I went shopping with mum, felt shattered and dizzy and spent most of the day running back and forth to the toilet. Ended up shouting at her in M&S about god knows what and getting completely over-emotional for no legitimate reason.
Day 2 spent at home feeling rotten, no appetite and grumpy as Hell.
Day 3 was my little brothers graduation and I was determined to attend and feel better. I remember saying to my beloved the night before 'Best perk myself up for tomorrow' - Brilliant. If anyone knows how exactly you do that then please let me know as that phrase makes no sense whatsoever. So the day arrived, I was up with the lark and caught bus into town, slight headache on the horizon but I reasoned I hadn't eaten and the sun blazing in the window caused that (yes, I said Sun. In Scotland. In November.)
Met my brother and his lady and he was a little on the nervous/stressed side. Had half a bacon roll and lots of liquids and insisted on sitting at end of the row next to the door to bemused glances from older people around me. Dizziness got steadily worse and the headache was brutal. Queasiness was on the way at this point too and the ceremony had only just begun. Got ridiculously emotional watching lil' bro' graduate and cried the tears of a sick and soppy big sister.
Then was another bus trip to the reception. Leaned up against the wall in the grand hall and avoided the fishy canapés on offer for fear of them making a reappearance. Old lady next to me was brought a chair to sit on and I was soo close to shoving her off so I could rest my wobbly body. She may have been 80+ but at that point in time she was 100% healthier than me. Anyway, skipping to the end, I said my farewells and met my beloved on bus home. Felt AWFUL at this point and about 10mins from home I threw up over him several times. Lovely. Mixture of absolute horror, mortification, confusion and embarrassment all in matter of moments. He was totally understanding and reassuring and when I was safely ensconced at home I spent next few days getting more intimate with the sick bowl.
Horrible bug that lasted all week, shivers, sweats, sickness, dizziness were just a few of the happy symptoms.
The thing is, I KNEW it was coming. Obviously not to the projectile-vomitting-on-a-bus extent that it did, but I knew from day 1 I was going downhill.
It's shown me I can't ignore when my body is trying to tell me to slow down or give me a warning of what may be ahead. It knows best. I need to learn the language of my body, and right now I still require a translator. Anyone fluent in Colon?

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