Bit of backstory (5) - Enter Sid

Back to the old story then. Apologies for the delay, yada, yada (give me a break haven't I apologised enough, jesus - you people. God, I'll be so glad when this is over and I can get back to the fascinating discussion of what I've done at work but can't talk about and how little work has been done on the house).

So there I was, back at my parents.

It was the perfect place to recuperate. Very quiet, loving parents to look after me, Sky+, I could go on...

My days were punctuated by visits from the district nurse. She'd come round and then unpack and then repack my wound. Oh, the joy. Luckily, by this point I had very little dignity left. That just left the pain of having an open wound on my bum that was being constantly cleaned and poked around.

So that should have been that. A few works of TLC coupled with a gradual healing of my weeping bottom.

Only thing was, I wasn't feeling much better. I was feeling worse. My appetite completely deserted me. I was weak as a kitten but a lot more decrepit. My ability to reach the toilet in time was starting to desert me more and more frequently.

Strangely, I had a pain at the top of my leg when I walked. The nurse reckoned that this was likely to be from the surgery to remove the abscess - maybe they'd bruised the bone or something.

But surely that kind of pain would recede over time? This was increasing.

Finally, I was starting to get into a bit of a bad state and my Mum took me to the GP. I had to prop myself up on the counter while the receptionist booked me in. I could barely stand unaided. When she took a look, she diagnosed that I had another abscess - on the opposite side of the bum crease to the first. So I was scheduled in to go to hospital again.

Enter the glory of Hull Royal Infirmary. HRI has been described as Beirut General and with good reason. Its a run down, filthy disgrace of a hospital. Don't get me wrong, the staff are fantastic. But the place is depressing, dirty, under maintained and under staffed. In total, I spent a week there and it was hellish. I had my abscess removed and that went fine. As I started to recover from the operation, I noticed a problem.

I was incontinent.

Incontinence might seem like a bit of a joke if you've not experienced it. But I can tell you its a horrible, self-esteem-destroying experience. Mine wasn't helped by the fact that I now had two open wounds on my backside. Both on the bum-cleft. Think of the soreness you get when you've had a bit of diarrhea. Then throw in almost constant, infected seeming diarrhea and two open wounds around the size of a plum straight in its path. It huuuurts.

So they discharged me.

Does that seem a little odd to anyone? It did to me. I struggled through an evening and a sleepless night. I heard my Mum going to the loo at about three in the morning and I called to her. She came in and I broke down. I just couldn't handle this anymore. I'd been off work now for months. My abscesses didn't seem to be getting any better. I had no prospect of any kind of life. I was prepared for anything the doctors could do, no matter how drastic. Anything to get me out of the limbo and gradual decline.

So the next day I phoned my GP and told him I needed to go back in. He arranged it and I my Dad took me off to HRI again. Luckily I was only in for one night and then it was off to a more specialist hospital - Castle Hill.

If HRI was Beirut, Castle Hill was Paradise. A rural setting. Clean. Lots of staff. Fantastic specialists.

There now followed endless tests. The surgery I had in prospect was very drastic and likely to be irreversible. So they needed to make sure that they'd got the diagnosis right and that it really was the best option.

So I had an IUA [1], a barium enema [2], a small bowel enema [3] and an MRI [4] (I'm sure I've missed a few out).

The result of all this was that they found that my colon was in a bit of a bad way. Riddled with infected rawness. Plus, my rectal sphincter had all but rotted away. Hence my inability to hold my poo in.

So they gave me the option of trying to treat it with drugs. No new drugs offered, just ones I'd tried before. I told them no.

It was surgery. Radical surgery.

Total Colectomy and End Ileostomy. In layman's terms this is removal of the colon, with the end of the ileum passed through the belly to make an opening called a stoma.

So, on 24th March I was marked up for the stoma site and sent off for the operation. After the surgery it was a night in the ICU [5], lots of tubes sticking out of everywhere (central line in my kneck, another central line in my arm, a canular, a catheter, a drain in my backside, a drain in my groin, intravenous morphine directly into my spine and of course the stoma itself). This was followed by a day or so in the HDU [6], then transfer back to the ward. Over the next week or so the pipes were gradually removed. I was introduced to my stoma and its changing routine (no name for it yet, it was all a little alien). Less than two weeks after the surgery, the staples were removed and I was sent home.

A week more with my parents and I was almost ready to look after myself. So my parents brought me back to my house in Chester. They stayed with me a couple of days to make sure I was ok and then left. It was bliss. I was eating. I was gradually getting stronger. I was an independent person again.

About a month later I was back in work.

I'd had six months off in total. My weight had plummeted to seven and a half stone when I was at my lowest but I was back on the mend. I'd been to the depths of myself and used all the resources available to me. I'd found out who my most loyal friends were and the value of your family. I'd spent a birthday in hospital. I'd been stripped of my dignity. I'd met amazing patients (I haven't even told you about the mad greek, have I?) and incredibly caring staff. I'd been aware of six deaths while in hospital (one a week - hope that's not average) and witnessed people astound you with their resilience and others give up on life and decide to die.

Before that I'd had around two years of wasted life to a debilitating disease. There are all sorts of things that I went through that I've barely touched on here (Elemental Diets for one).

But now I was better than I could ever remember being. It was time to start living again. I haven't looked back since (well apart from times like now, obviously).

Incidentally, my stoma wouldn't be christened for some time to come. It was w2b that came up with the name Sid and it has seemed wholly appropriate ever since.

[1] An IUA is an Investigation Under Anaesthetic. Its pretty uneventful and can be made quite amusing if you get to see your notes afterwards where they often include a diagram of the position you were in. Mine was a kind of on all fours but rolled onto back like a stuffed dog position. I managed to make it more entertaining by popping out for a cigarette shortly after I came round and then fainting in the corridor on the way back in.

[2] A barium enema is quite uncomfortable and for anyone that had any dignity left would be an embarrassing experience. Luckily I didn't have any and by this time had developed a fuck-you attitude that meant that when the barium inevitably poured straight out due to my incontinence I felt no need to apologise but merely shrugged my shoulders in a "what do you expect" way.

[3] A small bowel enema is unpleasant. In fact its bloody horrible. It involves a tube being passed up your nose, down the back of your throat straight down into your gut. This is then used to pump barium right to where they want it. Makes you feel like you do when you laugh after drinking a fizzy drink. Only it goes on for about quarter of an hour. Won't be having one of those again.

[4] An MRI is just dull. You lay in a tunnel as clanks and whirrs go on around you. I fell asleep.

[5] ICU (Intensive Care) is fantastic. You're doped on morphine, so - yes - most things seem fantastic. But they have this amazing way of propping you up in a kind of reclined armchair made of pillows. Its bliss.

[6] HDU (High Dependency) is pretty similar to a normal ward, except there are thousands of staff around you. Makes you realise what it must be like when you're important and go into hospital.