Off track.......IBD

A little insight..........

Drop your pants, lie on your side, bring your knees to your chest aaaaannnndddd relax, at that point your backside clenches & you pray the drugs kick in............they don't & suddenly in a matter of seconds your dignity is gone forever, everything is on display & to make matters worse they fill you bowel & colon with air & what goes in must come out & it does with the force & sound of a jet engine which rattles around the operating theatre, there's no controlling it & it continues as you get to spread your legs further, meaning the farting is accompanied by the squelching as your KY jellied butt cheeks are peeled apart to allow the scope to manouvre the first bend of the colon, again you pray the drugs will kick in.....,,,, they don't at that point scope scrapes it way further round, your legs are then pushed back & you're on your side again, just a few squeaks of air escape this time & the bloody damn awful pain is replaced by the fascination of seeing your insides projected on to the big screen & the inflammation in all it's glory, 'you're doing well' says a voice from somewhere 'when will the drugs kick in?' I quickly reply, the nurse laughs 'if they haven't by now they're not going to & it's too late to turn back' at that point I'm sure the words 'you b******' escaped from my mouth without me knowing I'd even said them, fortunately that was one if the tamest things she'd been called.
Then came the taking of the biopsies, 'you shouldn't feel a thing.....' Again the Tourette's kick in followed by a round of laughter, then a second snip followed by more profanity, this happened 12 times in total & now the whole procedure was to happen in reverse & by god did it scrape & burn, legs twisted in reverse followed by more farting & just when I thought it was over, I'm told 'I just want to massage your bowel, now even if you were sedated it would hurt a bit, so, relax & take a big deep breath in' followed by excruciating pain, 20 seconds later the words '& you can f*** right off' came from my mouth, she continued to press, again the words 'I said f*** off' as I attempted to force the scope out of my backside, which is nigh on impossible as this tiny nurse who was stood by my side showed the strength of 10 of me & pinned me down with a smile & it was over.........
Now rewind 72hrs & the diet of boiled chicken, boiled ham & water commences, it is not bad for 24hrs, getting a bit dry by 48hrs & shit by 72hrs, then at 7am on the Sunday I get to enjoy my last cup of tea, without sugar, without milk, needless to say it goes down the sink. An hour later 2 senna tablets are washed down with the first pint of water; water was something I was later going to hate the taste of after being told to drink 2 pints every hour. I head back to bed & a few hours later the odd rumble in the guts begins & it's soon time to down the first pint of sickly lemon flavoured solution followed by another pint of water, all is good the 1 hr later, bang, the world comes flying out of the backside at a force that causes splash back that you could not imagine & the stench is almost unbearable & just as I'm about to step in to the shower, bang, it's coming out again this goes on & on & on until it's time to drink the next pint of the sickly solution, by this point I'm using medicated wipes & sudocrem, little did I know that this was just the beginning & there would be points during the early evening that I'd be running to the toilet as it trickled down my legs, this continued until around 2am by which point I'm wiped beyond belief & had to be up & ready in 5hrs to head to the hospital.
A bit crap really considering if I'm lucky I'll only have to endure this yearly, if I'm unlucky it will be 6 monthly. Now some may think it's a bit undignified to be as candid on a blog, but compare this to being drained most of the time, shoving steroids & antinflammatory suppositories up your backside four times a day or being late for work because you have to stop en route & spend an hour in a cafés toilet with crippling pain or giving your team instructions through the toilet door because the diahorrea kicks in or you have to rely on your 16yr old for the basics, there is no dignity left & there can be no shame in telling people what this awful disease is like, it's crap, literally, it strips you of everything, physically, emotionally & financially, it makes you think you feel ok & are getting some of the real you back then slaps you around the face until you're doubled over in pain, it makes you go to the toilet until it hurts & you can't face it anymore (32 times is my record so far which resulted in putting Ice cubes inside myself to stop the burn), it makes you cry, almost sob for no reason, it makes you wake after only a few hours sleep no matter how tired you are, it makes your memory play tricks until you find yourself making notes just to remind yourself of simple things, it makes you have days where you feel like you've nothing left then it takes a bit more off you, this disease is a BASTARD!
But, I'm not bitter, I'm one of the lucky few that got caught early & despite having side effects & causing other ailments I got put on a mixture of meds until I was sick, but they've kept it from spreading thus far & despite how I may feel some days they're doing a good job of making things manageable, others aren't so lucky, some face major surgery & years of readjustment & only two weeks ago the IBD community lost a life to this disease, a young beautiful girl was taken from us because so little is understood about inflammatory bowel disease, a tragic loss of life.
The biggest misconception about this disease is that people think I look ok, I don't look ill, the truth is on a lot of those days I'm doing all I can to hold it together & get through until I can get to my bed again & take more pills ready for the next day.
So spare a though for sufferers out there & help where you can by sharing, caring & showing some love as we don't need anyone's pity.
Thanks for reading

Where did it all go wrong

Recently I've had the fortunate privilege of having to take time out of social care for health reasons. I say fortunate because there were many unanswered questions in my head which were somewhat confusing, particularly in relation to what is going wrong in social care? Why does it seem to be in such a rapid state of decline in terms of standards & social worth.
Now let's be honest, it would be all too easy to blame the current economic climate driving down pay, eroding terms & conditions etc. we all know that during times of austerity societies most vulnerable are always hit hardest, but to be honest it's really pissed me off listening to providers procrastinate about margins getting tighter, markets failing due to the economic downturn etc etc etc now I'm not naive enough to think it doesn't impact but the fact that providers continue with this lame excuse pisses me off!
During my period of reflection I feel the answer is far simpler & it is this;

'We have created our own culture of competition which itself breeds fear, when we should have been embracing the culture of sharing'

What happened to passion? Creativity? Desire? Doing something for social good? These are the basics of social care. So to cut a long story short, I want providers to stop whining, stop competing, stop trying to undercut each other & embrace a culture of sharing, of partnership, developing trade offs & most of all providers should get their heads out of their arses & work together, just like we used to & for the greater good, we work with & for vulnerable people & they deserve better.
So let's stop competing & start sharing.