Part 5 - knocking on a bit. 

During the 90's went to college and university for all of 3 months, it wasn't for me. I started work and worked some for some terrible companies, but early 1999 I got a job which involved going all over the country to various BAE sites.
At the time I was due to work in Brough, Hull for 2 weeks, pretty much straight away I "acquired" boils on my backside (or to those that know me well "my arse"), I thought I'd got haemorrhoids, and it being yet another embarrassing illness.
Now this was difficult to hide, as my pain was obvious to all mainly because I had to sit down...in an office or my car.
The following week I managed to get an emergency appointment at the local GP, the doctor  was understandably and in typical fashion rude, and told me off for wasting her time (history repeating itself?) and obviously because she couldn't be bothered to read my notes, just said it was a "peri anal infection", caused by the hairs on my bum growing inwards. I didn't mention crohns because I genuinely thought it wasn't that.

I basically put up with this, with no medication whatsoever for another 4 years (purely because of the laziness and ignorance of one GP).
My mum had visited the GP's and she had asked my mum how i was getting on (by the way this was a different GP who unfortunately isn't there anymore), my mum mentioned my "arse grapes", and immediately she said "thats his crohns flaring up",  and had booked me in for an appointment at 6pm on a Friday. This annoyed me because I'd been to work all day and drove for about an hour just to get home, I now had to go out again to get rear prodded.

I ended up back at hospital, they did ask why I never mentioned my bum, but my defence was I genuinely didn't know crohns affected the outer part of my bum. I had MRI's and another colonoscopy (yay!) to see if it was affecting my guts too.
I was then put on azathioprine  (took me ages to pronounce it) which are anti-rejection pills that transplant patients take. Side-effects list from pancreatitis, liver failure, rashes, nausea etc, because of this I had to have blood tests every 3 months. Small price to pay if you ask me. 

Attendance at work was made difficult but I kept my sickness record to a minimum with my vast supply of paracetamol and codeine pills to battle the pain, which felt like (sorry for the following graphic description) sitting on an apple with razor blades in it, I also tried to wear black trousers and sit on black chairs because I "leaked" a lot.

Then around 2005, it got worse when it was bad, I'd walk normally at work whilst in agony. Then when I was at home I'd walk like Cornelius from Planet of the Apes, mainly because it didn't hurt as much.
I was off work for 2 months, during that time I'd had an operation on my bum. I really don't want to go into too much detail, but they basically lanced the boils and inserted "setons" into the areas. Setons are tiny threads of gauze that basically keep the wound open, to help drain excess.....erm pus....The dressing was worse it was basically a big pack on my arse, it looked like a big nappy...oh god, now I'm an adult baby!! That was easily removed by having a bath...well I say easily..the bath looked like Jack the Ripper had washed in it.

Now I admit that this entry hasn't been as upbeat as the others, mainly because there comes a point when it stops being funny. I honestly think I make jokes about it to make it less awkward for friends and family.

I also say that crohns will never affect my life, but deep down I know this to be rubbish I know it has affected my self esteem and confidence. I think for many years it prevented me from getting decent jobs as i "sold myself" short, I'm ok in that department now as I have a new car every 3 years and own my own house. So not bad for a single bloke with a chronic illness. I find it hard to gain relationships, because I'm embarrassed by my scars and size (I mean my height and frame, you rude people! I'm ok in that department, ladies) and my constant embarrassing issues.
Many who know me will be surprised by this as I come across as very confident and "the life and soul"of the party.
I also don't want kids in case it really is genetic (I wouldn't wish it on my worst enemy, never mind my offspring). I still appreciate the support of my family and friends, but when you live alone, and are in the midst of a flare up, it can make it the going extremely tough and you feel very isolated. 
Not sure I should even mention this, but maybe it helps to get it off my chest. I promise more humour next time.

Part 4 - Aftermath 

In the days and months following my "freedom" from hospital. There was a slight period of rehabilitation, I couldn't go up or down steps and stairs  (I found that out the painful way on our back door step). I had to navigate our stairs by going up and down on my bum. I also had problems speaking and would often stammer ever so slightly (although I thought no one noticed, I'm not sure they did), and couldn't do intricate tasks I would twitch if I had to thread a needle for example (erm not that I threaded needles!!)
I neglected to tell the consultants about this, and eventually it all went away I think the seizures I had in hospital caused this.

Pretty much spent 6 months with my bag, I had also read they took between 25% and 33% of my colon out. I had the usual "issues" with it, I wont go into detail! Some of you can only imagine and those that have one or had one don't need reminding.

I was due for my "reversal" or as its called these days "re-section" in July '92 and I was desperate for it to be a success, but had heard some of the horror stories so I was understandably worried.

The operation went well, I think it was a day or 2 then they let me eat. The fun was due to start.
I pretty much stayed awake all night worrying, even made myself sick with worry. I was to tell them when I was due to visit the toilet. Crack of dawn, I had to go. This was it...told the night nurse who was finishing her shift and walked to the cubicles...,the first one erm wasn't in a particularly nice condition (I won't go into detail), the second one had an out of order sign on it, the third.......was basically toilet heaven....well compared to the other 2 it was.....meanwhile minutes later the nurse came running in, she had no choice really because a patient that had just had a resection a few days earlier had pulled the alarm, yes I did! Why? Mainly because there was no bog roll!  The nurse and I'll be honest I found it incredibly amusing, the nurse found it so amusing that she left me a present before her shift ended.....yes you guessed it some more bog roll.

After this the Crohns went into remission, I have very rarely had that stomach pain since. I realised I barely lived during my teens, hardly ever went out or hung out with my friends, I was almost 18 and after that wake up call I fully intended to make up for lost time. 

I even took part in a drug trial during the mid 90's, which involved taking either a pill or a placebo (basically a pill that does nothing). During ths time I had the wonderful pleasure of filling in forms about how often I "passed a stool" (this didn't involve handing over chairs!) and it's consistency....(hope no ones eating!) At one point I even had to pee in something which was then frozen.....a wee jubbly as I called it.
I pretty much thought despite what they say I had beaten Crohns, I was to find out by the new millennium that it would come back, only not as serious but more of an inconvenience or an embarrassment.....a pain in the arse, but that's for another time.

Part 3

Anyway intensive care was strange, there were about 2 or 3 other patients in there all were worse than me. I was pretty much awake and with it most of the time here, a male nurse had to bed bath me.....and to my relief he let me do myself.  (phew!)
I was out of intensive care the following day, I have no idea what turned me around...the treatment?the care? Who knows! Maybe it was my determination to beat this?
People often ask me if I had the last rights....but having "no religion" on my details, who was going to bless me? The Fonz? (not a bad idea)

Anyway back on the ward, the nursing staff were pleased to see me back as I'd made friends with quite a lot of them. 
I'd also become part of the furniture and even sat at their station reading "nursing times"...well I was bored.

I was eventually allowed to eat again and was given a bacon sandwich by an auxiliary nurse called May who promised me she'd make me one when I was allowed to eat. The mission now was to fatten me up, my doctor prescribed (I'm not kidding here) a diet of Mars Bars and Big Macs..my mum would regularly nip to the one near Salford Crescent station. I think my friends and family were very important in my recovery, my mum and sister did their best to keep my spirits up, despite theirs was probably hitting rock bottom. Like I said earlier my Uncle came over a lot too and I haven't forgotten this, a credit to my other uncle who cut my hair because it had grown long, his experience? He'd clipped his wire haired terrier called "Bill" on many occasions! And my cousin Adrian who is a legend in my eyes, kept me laughing every time I was miserable and took me for wheel chair rides so we could "check out the talent" and his greatest achievement was making light of that monstrosity of a bag attached to my side.  For example, for the first few days it just inflated with wind, he wanted to see it, I showed him and he suggested that whilst it was Christmas why should we not go into business inflating party balloons with my "windy" bag.

There were various incidents I've missed out before all this, like slipping and spilling a bottle of pee everywhere, the seizure I had whilst playing on a Nintendo game boy lent to me by my mums friend (it was to be her daughters christmas present) . I remembered waking up to the nurse saying I'd had a fit, my  words were "is that game boy ok?"
And way back before I was diagnosed, I'd had an exam and rather than jump on the bus we walked home from Shevington high school to Appley bridge (about 2 miles) we were almost home and I stumbled and rather than find my footing (like you normally do) I fell flat on my face...probably looked funny to other people, but it bloody hurt. My good friend Neil (who is still a good friend) saw I wasn't well and went out of his way to walk me to my door, thats what i call a proper mate!

Back to December 1991, I was allowed out for Christmas, on Christmas eve till the day after boxing day, but I had to go back and even spent new years eve there. It didn't matter because I was let out a couple of days later for good! FREEDOM (as Mel Gibson put it, in a bad Scottish accent)

The only catch was my mum had to drive me back every other day, to get my central line (the tube into my main artery that fed me) cleaned so I wouldn't get an infection. I was let off the hook after 2 weeks and it was finally removed.
I could now start living, and although the bag was a total pain to cope with such as various accidents with it, I coped quite well. I admit I feared the bath with it in case of accidents so I showered for that 6 months instead. My weight went up, my voice broke literally overnight and thank god my height increased...ok I'm not that tall, but it's better than before! This isn't necessarily a bad thing as a the man in the bed next to me (who had lost his leg due to diabetes) said to my dad referring to me "size and age doesn't make the man".

Although I admit I'd had it bad, there's always someone worse off than you, and at this time in hospital there seemed to be just myself that suffered. Since then I've read of and spoken to people who have had it worse than me, so I thank my lucky stars I never had to go through their ordeals. 

The Early Years

Part 2

By now it was around mid November, and I was at Hope Hospital Salford, around 18 miles away from home.
I was now 17 and had not been home for a fortnight. I feel I should add at this point that not once did I have any pain killers. I'd got it into my head that if I took pain killers then I wouldn't be allowed home. Now although I desperately wanted to get better I was homesick and wanted to just go home. I think this stemmed from my earlier stay at my town hospital at Wigan and although they were nice in all wards (except one!!) they would tell me to say if I was in pain, and I did.....but they did nothing about it. So this is probably why!
Anyway at Hope, I came to realise that it was ok to ask for pain killers after a nurse sat down with me and questioned why I never asked for any.

During this time, my mum and my sister visited me every night and day (if possible), my dad sometimes came and during that year went on holiday twice (not sure if any of you reading would do the same to your children if they were in hospital). My Uncle (my mums younger brother) came more times than my dad!

I'd had lots of various tests to diagnose Crohns, I had various barium x-rays that year, one which was truly horrific at earlier that year in Wigan. I basically had to swallow a long flexible "drinking straw", whilst under the x ray. I did this whilst retching (sorry if you're eating) then a fine wire was inserted into the straw to straighten out the straw. I was then put onto a hard wooden table with no cushioning at all. By now being as skinny as I was, this was very uncomfortable. Then the barium on a drip was fed into the straw then they x-rayed me. The radiographer then had what can only be described as a "prodder". And he kept jabbing me in the stomach, why? I think it was to move the straw on....I really don't know.
I really wish I had the strength to knock this man out because I was in agony all the time. Later that year I had another, you can imagine my fear. All day I waited, they came for me late afternoon (obviously to make me worry more), I was back on the ward within minutes because they hadn't "emptied" me out with the laxative prep!
My mum went ballistic at the nursing staff, who were at the time discussing their Christmas party....by the way it was July when this happened.

Other barium tests were barium "meals" that you drink, and I did ask why couldn't I have this the last time? Wigan hospital had very old methods, almost Victorian, I began to wonder if they'd prescribe me leeches in case I caught the black death. They even lost my notes at one point after I transferred to Leigh, once found they were transported in a Taxi.

I'd also had sigmoidoscopy, colonoscopy,  endoscopy, various ultra sounds (in case I was expecting), ECG,EEG, Gamma camera, CT scans...the last 4 were for my seizures, they were making sure I wasn't epileptic too. I'd had some of these more than once because I'd been under various different consultants/hospitals.
I went through a phase of not being able to pee, my bladder was clearly bloated. So a catheter was fitted, under no anaesthetic (yes I know, it's agony). They were mentioning kidney failure now!
Fortunately both kidneys  were ok...my bowel was so inflamed that it was pressing on my urethra preventing me from peeing.

I was told sometime late november that I was to be operated on, it may seem strange but I couldn't wait for this..all those years of pain would soon be a distant memory or so I thought!

The operation went well I woke up with a ileostomy attached to me, and I just groaned and went back to sleep. My consultant had warned me that I may end up with one, but it would only be temporary.
Things went ok for a while until my "bag" went over active, basically the drip that was feeding me was going straight out. And I was gaining nothing from it..my weight dropped to just above 3 stone (around 25kg), by now everything was a blur I saw things that may or may not have happened, and maybe the drugs did all that.

That morning my mum and sister were asked to come in as I was "very poorly".
I was put into intensive care, for anyone not from the UK, they don't make these decisions quickly and I had a bunch of "suits" to see if my treatment was worth the expense of this bed. This bed was to be the turning point..

The Early Years part 1

Not sure how to start this off and i apologise for the length as I tend to "go on" a bit.

During the majority of my secondary school years, I was barely interested in taking part in sports mainly because I was always tired. I also suffered from this excruciating stomach pain, which I always just passed off as "growing pains". I'm not sure when the pain began and I'll admit most of those years are a blur.
Fast forward to my final year I was around 16 years old, we did work experience at school, or more likely it was forced upon us. I was one of the last to choose a job. During the previous years I'd seen nearly all of my friends shoot up in height. I on the other hand stayed a short 4foot 8 (I'm guessing but I was definitely below 5ft).

This was also 6 months after my Dad left our family, I wasn't particularly bothered because he'd made himself unbearable to live with. I was more angry that he'd bogged off in the middle of Italia 90 (football/soccer world cup) and England were due to play Germany in the semis (and all you English know how THAT ended!)

I think during the work experience I realised I might be ill, i weighed around 5 stone and looked about 13. They even asked me to carry a box of 6 bottles of wine despite the fact Icouldnt lift much. And being the silent sufferer I said nothing.

Then in February there was a family wedding, various Great Aunties, Uncles and cousins hadn't seen me for months and in some cases years had commented how ill I looked to my mum and sister. In their defence they had been trying to get me to get medical help, but I was stubborn and said I'd be ok.
 I did seek medical help, but my GP only saw my height or lack of it and referred me to an endocrinologist. Another visit later and another GP thought I was time wasting and being a hypochondriac, my mum tore strips off him and told him to check how often I visited the GP (occasionally for hay fever). He did apologise and actually thought it was crohns or colitis, and got me in hospital that same nigh, so he redeemed himself.

It wasn't for another few months before I was diagnosed with crohns, got decent grades in 6 of my GCSEs. Maths, English and Science being in that 6. A good achievement considering I was ill in one of the exams. I managed to convince the doctors to let me out for a day to get my exam results, although I was more concerned with getting to the cinema to watch Terminator 2.
I was put on steroids, which helped then the pain went down so did the dosage and then the flare ups started again, this went on until October 31st 1991.
Yep of all days Halloween! I suffered a haemorrhage on the toilet (think Elvs but skinnier and I wasnt wearing blue suede shoes). I was in immense pain and could barely walk and became light headed due to blood loss. There was more blood than Michael Myers could shed on Halloween I can tell you. This completely ruined my Shell suit bottoms, but if anyone can remember shell  suits you'll agree that it was a blessing in disguise.

I spent that night in hospital in "a cupboard" due to cuts in the NHS, but they were brilliant. They managed to get me sorted but because they suspected that I'd need surgery I had to go to a neighbouring towns hospital, because the anaesthetist was there that night.
They did say I was too weak for surgery and needed blood transfusions, I was sat up right in the ambulance (whilst being transferred) with a bucket of warm water between my legs to "unfreeze" the units of blood. All the time this was going on, I was joking and "bantering" with the ambulance crew despite the fact this was the only time whilst being ill that i genuinely thought my number was up, despite the bravado I was terrified.

I spent 2 weeks in Leigh infirmary they were great too, I did suffer 2 seizures whilst there mainly due to an infection because I had a central line put in.
One of the doctors told my mum that there was nothing they could do for me off the record and that I'd need more specialist help, and to ask for me to be referred.

I ended up in Hope Hospital, which to me "was miles away", being a driver now I know it isn't very far at all.