Part 1: Pre-OP and the OP

As many of you will know, I was waiting….constantly waiting. Finally though, the wait was over. A man in very ominous scrubs came to the door….

It’s time!

Thunder cracked ominously overhead, the lights flickered off for a second and lightning flashed across the rain soaked windows…

Ok. So none of that happened really, I was taking a little bit of artistic licence. It didn’t even feel like that that would be much too melodramatic. A man did come to the door to collect me though, that much is true. It felt fine actually, I was scared but not terrified. I was ready for the operation, I needed it and waiting sucks. I got pushed down a few floors in a wheel chair, in my stupid little gown towards the anaesthesiologist’s room. This room is the gateway to the theatre, and so at the door I had to give my mum a hug, tell her I’d be fine and she had to leave. That part sucked, she was upset of course and I was worried about her. I’m not sure how she sat and waited for me for so many hours, must have been horrible. I haven’t really asked what it was like. Maybe she’ll blog about it! Her blog which you can find at:

http://crohnsmum.wordpress.com/

So in the room I had an epidural, it’s a needle in the back that fills you with pain killers or something; it covers your nerves and numbs your whole body. It was fine, there are risks to it apparently but I don’t really know. I wouldn’t say no to something if the surgeon suggests it. After that I was put on the bed, and it was time for the counting part. You know that bit in films, where you see through Brad Pits eyes…

10…9….8…7…

And then the greyness seeps in from the side and the screen goes dark. Yeah that doesn’t happen either. She just put a mask on my face and I breathed in a couple of times and then I was out like a light. Sorry to ruin two pieces of Hollywood glamour in one blog, that could be some kind of record. I do however look like Brad Pit so that is fine.

The shortest part of the blog is actually the operation, which seems like an absolute robbery considering it’s the most important bit. But all I can say is:

It happened here! *CUT CUT, PULL, STITCH*

They said it went exactly as expected and it actually took less time than expected. Excellent!

Part 2: Post OP day 1

I then woke up. This part feels a little like the incredible series by Lemony Snicket ‘A series of unfortunate events’. From now on I am a very unlucky person and I am going to bitch and moan about it so if you don’t want to read that, you have been warned!

Post-Op started fine. I woke up, no pain as expected. Then suddenly and unfortunately (see!) my epidural developed a block. This means that across a part of my spine the pain relief stopped being delivered. So I was in pain, a lot, ya know because of the major surgery and everything. They had to fix that, which they did, it sucked but they got it sorted and the pain went away quickly. Now during the surgery and afterwards you have, alongside many other tubes what’s called an NG tube. That’s the one that goes down your throat and into your stomach. It’s supposed to stay there…

Mine, unfortunately (two!) didn’t. For some reason it ended up in the back of my throat. Where I chocked on it…I don’t know if any of you have ever chocked, you probably have. Well I couldn’t breathe, and then I started being sick and chocking more. I was actually dying, apparently the face was going purple and eyes were beginning to roll. Now that sucks, it’s terrifying. You know when it sucks more. When you have a brand new 10 inch cut down your stomach which is going to hurt a lot. The nurse pulled the tube out eventually, cleaned me up and after 5-10 mins of slow breathing and coughing the pain and panic subsided and I relaxed. The rest of this part is super boring. Relaxed. Chatted to nurses. Got taken to ward. Eventually saw my mum. Told her what happened. Probably exaggerated. Drifted off and slept till 5am where the next adventure began!

Part 3: Post OP day 2

World of sleepy pain, drifting in and out till 5am. Then terrible hip and back pain. They were trying to figure out how they would control it. Was given no pain relief, got worse and worse. They didn’t really suggest anything, claimed they were trying. “trial and error” to manage pain when they spoke to Mum but I’d had no trials! Was trying to move to dissipate the pain but it wouldn’t work in any position. I’ll overuse the word agony in this part but not misuse it. Agony is what it was.

Was examined by a doctor. He said that he was happy with epidural and that the back pain was caused in the long muscles in the side of my back which were pulled by the way they had me lying in surgery. To combat the pain he prescribed IV paracetamol, diclofenac sodium and a suppository. I got none of those meds. Turns out even prescribing the suppository after my surgery was ridiculous and stupid because I couldn’t have it anyway. This isn’t the first time I’ve had someone from the NHS miss-prescribe an unsuitable drug….it beggars belief.

I begged for the pain relief he had prescribed over and over. The nurse effectively ignored me. She was in the ward doing her tablet round, I was lying in pain and she basically told me that it was more important to give out her tablets in order to the guys around me. All of which were semi asleep and in no pain. It felt like neglect but looking back I think I was in such a stressed state they were probably doing everything they could. Still that hindsight didn’t help then. No pain meds had come. The diclofenac sodium they prescribed for back pain 3 hours ago which they couldn’t find in a different ward had still not arrived.

Before 7:30 I’d had absolutely 0 pain my abdomen, obviously a good thing. The epidural was clearly doing it’s job, but at 7:30 a creeping pain began. It developed quickly and by 8 it was so bad it had overridden the back pain totally. I was moaning in agony and begging for relief. Not very dignified I’m afraid and totally not living up to my Brad Pit character who would no doubt have faced the pain with a reckless dismissal and, for an American a surprising level of British stonyface-ness. I’m afraid I let the side down!

You’d think they’d rush to sort the epidural out and fix the pain, but they didn’t. It felt like a hell of a battle to convince them that the back pain was no longer the priority. I’m sure they were as confused as I was and the whole thing has a bit of a shambles. That time is a bit hazy, the pain got worse and worse and I’m not really sure how much time passed but eventually, everyone SPRANG into action.

Someone made a decision! They decided the epidural wasn’t working (claimed a leak), turned it off and put me onto what’s casually referred to by the patients as ‘the button’. It’s real name is patient controlled analgesia machine and basically you press a button to release a small amount of pain relief, in my case ‘oxynorm’. You can press the button every 5 minutes to prevent you from overdosing. All of this happened in the space of 30 minutes. I was glad that things seemed to be progressing.

Sadly, over 8 hours I was self-prescribed, injected, and IV’D enough morphine like opiates to knock out a small elephant they didn’t even touch the sides. They some how managed to have zero affect on the pain I was having. I wish I was overstating that length of time. But my mum sat and diligently held my hand, she can testify that it took eight and a half brutal hours before things improved.

The last 4 hours were so bad I thought I was dying…it sure as hell felt like it. The day was handled poorly, a lot of mistakes made by individuals, facts later admitted by several senior members of staff.

The joyous breakthrough came when they decided to turn the epidural back on. The one they decided was broken and turned off a massive 9 hours ago. It wasn’t broken after all, someone had made that decision without consulting the anaesthesiologist. Which, was a huge F*** up if you’ll pardon my self-censored French.

So I needed it turning back on, but because it was the weekend there was only one person who could do it….! One person who could help in the hospital. No pain nurses. No pain control as I was so vehemently promised.

When he eventually made it to my bed (he was in surgery and very busy, totally understandable). He was absolutely fuming. He was so angry that they had removed it without talking to him or properly checking if it was actually leaking because he said “there is no evidence that it was soaked”. So the question is, why did they do that. Why did they remove it when they clearly were not able to make that decision properly. Because of that mistake they caused me more than 8 hours of agony. That can’t be ok, it just is unacceptable.

During those 8 and a half hours something good did happen though. A little funny episode, sadly only witnessed by my mum as she sat by my side so diligently by my for that whole time.

I’d had so many of these opiates that my mind was completely messed up, I was as high as a kite. I was super drowsy, eyes were drooping and mind wandering in random tangents, in and out of coherent thought. Some of the time I was talking absolute gibberish! I hope she posts in her blog about it so she can recount all of the funny things I said but here is a quote from her just explaining one little snap shot to give you a taster!

“Alex was painstakingly explaining the benefits of buying an I Pod and suddenly said 10. What do you mean 10, I said ?. They were asking me what ward I was going to weren’t they, answered Alex. No, I said that was yesterday.”

Anyway this post is already disgustingly long because it’s taken ages for me to be able to get well enough to write and upload it. It’s so long I’m sure no one will read it, but it felt important to get a record of what happened over these life changing hours and I can’t help but ramble! The most important thing is the epidural worked! It kicked in in about 15 minutes. Oh my god sweet relief. I’ve never been so happy.

That joy is where I will leave you,

9pm on Sunday night. Mum finally able to go home and rest, a whopping 30 hours after the surgery and me about to drift off into blessed sleep. I’ll cover the following recovery, it’s ups, downs, scars and gory bits in my next blog post. I think a whirlwind 30 hours is plenty!

Until next time, I’m still here. They did seem to have a bloody good go at finishing me off, but they failed.

I plod on to fight another day, with a brand new stoma and a new lease of life!