I got my life back

So first things first. I didn’t die. Large point of winning there. I am now sat at home I my own bed finally, surrounded by mountains of medical supplies and medication.

I spent 13 days on ward 13D in the Royal London Hospital. It was an interesting if slightly longer stay than I anticipated.

I arrived at 0700 on the 31st to be admitted to the ward. After being told I was about to be dragged downstairs for surgery that was it I cracked up and could not stop crying. I was beyond shitting myself. I got taken down to the anaesthetic room pretty quickly where I was cannulated and given a first drug to make me a bit woozy. “I don’t think it’s working I feel……oh wait, ‘fuck that’s working” I dribbled as time slowed down. I was then told the next one would put me out. “PLEASE JUST DONT LET ME DIE!” I desperately asked before I blacked out. “Don’t worry you’ll be fine the anaesthetist replied. Then it all went dark.

Woke up about 5 hours later, with 1 drain in my stomach, a bag for life, an NG tube, 2 drips, a catheter and 1 drain where the sun will never ever shine again. Oh and bout 20 staples up my stomach. To say I was a little bit fragile is being generous. I don’t remember much of the first 2 days other than trying to reply to text messages and only being able to type absolute drivel, that and the fact that my morphine button appeared to be doing fuck all for my pain relief. Cue the anaesthetist. “Hrmmm ok” says he “we shall try you on fentanyl see it that makes a difference”. It didn’t. So I was switched back to morphine at which point they say “hrmmm, maybe you are just very tolerant to it” so the anaesthetist stood there and continually upped the dose until I could feel it starting to work at which point I take over with my magic button. He informed me that although fairly normal to be tolerant to it, I did have a higher than normal tolerance, one that you would usually see in drug addicts. I guess there goes my career as a drug addict, I couldn’t afford the amount I would need.

The next couple of days passed in a relative haze. I was obviously a lot more drugged up than I initially thought, I could have given Amy Winehouse a run for her money. On day 4 I think, the morphine pump came out and I was on oral morphine if I requested it, tramadol and paracetamol. Now as good as morphine and tramadol are as pain killers they also slow down your digestive system. Unbeknownst to me, I had a nice case of ileus which is basically where your digestive system is still asleep from the operation and general anaesthetic. However the doctors hadn’t discovered this yet and I was feeling good so out came the NG tube and down went water and soft food to test out my ability to keep stuff down. A litre of bile later and we work out I failed. I can confirm vomiting after major abdominal surgery is one of the most painful things I have ever done. So back down goes the NG tube. Now this NG tube was quite thick and during the process of putting it up my nose and down my throat into my stomach I threw up pretty much the entire contents of my stomach so I couldn’t help but think it was a bit of a redundant exercise as there was now nothing to aspirate out to stop me from being sick.

So due to the fact I for want of a better expression, had not had a shit, my guts were still declared asleep. I honestly thought they were going to have to call in some form of rectal exorcist. “I COMMAND THEE SHIT TO BE EXPELLED FROM THIS VESSEL OF THE LORD!” and then projectile shit everywhere as I climbed the walls of the ward and made my head turn 360 degrees. So I was back on fluids in the form of an IV and back off soft food and only sips of water. I was formally told that they suspected I had a case of ileus and I would just have to wait about for my guts to perk up and they would encourage them along with some laxatives and other bits and bobs.

I found where I had written in my diary on the 6th day.

“I am 6 days post op. I have just had one drain removed, need one more removed, which will hopefully be tomorrow. As soon as my stoma starts working and I can hold my food down then my NG tube should come out hopefully along with the catheter. I was in a lot of pain last night but slept from about 10 till 4am the I passed a bit of gas which instantly felt better, but it feels like there are pockets of trapped gas in other places which are agony. Now we have catch 22. To get your insides started you need to be up and moving, however doing that feels like you have been hit with a mid size car, possibly a small mini bus. I’m going to get up and wander around in a bit with my visitors later as I would love to start eating and drinking again.

The view out of the window is amazing here. Just a shame it’s so bloody hot. I want to be out in the sun relaxing. I’ve changed my bag on my own twice already. It’s easy and quick enough. Part of me can’t help but wince when I look at it and think it’s disgusting, but fuck it. It’s really not that bad and its kept me alive which generally is a plus point unless I’m due to be the next Hitler. There’s a couple of nice older blokes on my ward who have also had quite serious ops. There is a guy called Peter who is somewhat less sociable and I have come to know him as chunder man. As that is all he seems to fucking do, and I had a feeling it was self inflicted (I found out later, it was, he’d nearly killed himself with booze, even though he was apparently a qualified nurse). I’m sure he had some very genuine problems and serious things wrong with him but he was such a fucking moaner and so fucking rude. I could count the no of times I heard him say please and thank you on one hand. He had such a dull monotone voice, so I suppose it was a good thing he decided not to speak to the rest of us really.”

They removed my catheter later on that day and I went for a stroll and even made it outside however the river del urine, failed to flow. Hour after hour passed by which point I am absolutely busting for a piss. Nurses are starting to give me worryingly sorrowful looks like, “I know what’s coming next!” and of course they did, and what was worse that was so did I. If I didn’t have a slash in the near future one of two things would happen. I would damage my bladder, possibly tearing it and causing the need for further surgery, or I was going to get re catheterised. You’ll never guess what ended up happening. The calming convincing words of the nurse were “don’t worry, I’ve got lubricating anaesthetic gel” Fantastic me thinks. Not so much. I can promise you that it felt like a combination of deep heat and chilli powder being projected up my japs eye by a pressure washer. To be totally honest its wasn’t as bad as I thought it was going to be but it still wasn’t nice. That catheter stayed out till 2 days before I had to go home and I slowly regained the ability to urinate under my own power without the need for flowing water audio CD’s.

After a few days my guts perked up after a long walk and a couple of cigarettes (they always make my guts go like clockwork, ironic cigarettes contributed to me getting out of hospital) my guts finally kicked in, but obviously we had to make sure it wasn’t a one off. So I had to remain in for a few more days. Now came learning to change my bag, I swear to god the first few times I did it I thought it was the most disgusting thing I had ever done in my life and I was like fuckkk. This is for the rest of your days. But I thought to myself “have a can of man the fuck up and get on with it you pussy! this shit is keeping you alive” no pun intended. So I volunteered to do my first one and it was pretty easy to be honest, just needed getting used to what looks like an angry dogs penis covered in poo sticking out of your stomach (on a bad day). However my favourite day was when my stoma nurse came to watch me do a bag change my stoma decided this would be the best opportunity to kick off and projectile shit all over me, her and the bed. Half a degrading hour later and its all relatively clean and new bag on, so the stoma nurse leaves. Alas I notice a leak, so I inform the nurse who insists on helping which was lovely of her however when she cut my bag to size she unknowingly clipped the inside of it, thus creating a hole. So we carry on unawares and finish off with no dramas. 10 minutes later “My god what smells like decaying corpses being cooked in a vat of tramp sweat?” says I. Ah that would be you , you dickhead. I notice the leak so time for bag change no 3 within 20 minutes. I decided to fly solo on this one and managed to do it with no problems. That was my baptism of fire for bag changes and touch wood I haven’t had anything as bad since. I mean I even managed to change a bag recently in underworld in Camden with no lock on the door, piss and sick everywhere, no toilet seat. So with shirt over head, foot on the toilet and back on the door I proceed to have the worlds quickest bag change whilst using everything out of my man bag as there was no where to put it. So I’ve come on some way from 30 minute bag changes in the hospital bog.

2 days later and I was declared fit enough to release, beating my projected discharge date by about 3 days. My god I cannot tell you how good it felt to be home. Since then, I feel like I’ve gotten my old life back and I am some semblance of the person I was before all this utter bullshit walked through the front door of my life, bent me over and repeatedly arse raped me. I got on the tube and buses for the first time in 7 years. My god I have missed that. Did remind me how wanky and rude 90% of the British public is though. Anyways that’s enough for now. Much love I’m off to do a bit more living and what not.

[I have had this blog post open on my laptop since I left hospital but I literally have been too busy actually having my life back and being able to do things that I haven’t been able to concentrate and sit down and finish it. I also blame my blatantly undiagnosed ADD problem. But this is where I am going to leave this for now and will whack another post on later in the week as I have been concentrating on other writing stuff at the moment and now I managed to get this one up it like and can now go back to random smaller bloggages. Apologies for the absence, I’m not used to having a life you see.]

“Death smiles at us all. All a man can do is smile back.”

Tomorrow, “This is where we hold them! This is where we fight! This is where they die!”

Tomorrow my large intestines will pay for nearly five years of hell they have caused me. I will arrive at the Royal London Hospital for surgery at 7am. I could be in theatre as early as 8am. I will either be having part of or all of my large intestine removed and ending up with some form of ostomy, which will with 99% certainty be for life. It all depends on what the surgeons find when they open me up. Initially they are going to start the operation laparoscopically (aka keyhole) however they may have to open me up depending on what they find.

On one hand I can’t wait. It will be the beginning of the rest of my life. I should be able to do things again that I haven’t done in years that I used to take for granted like getting on a tube and going out with mates without constantly worrying where the nearest toilet is. However I have inane ridiculous fears that I know the chances of bad things happening are minimal, but my brain has decided to push them front and centre and concrete, weld and superglue into place. Of course the biggest fear is dying, however that’s probably the least likely to happen. More likely risks are post op infections, having a car crash on the way there or choking on lucozade in the next 20 minutes. I suppose what scares me the most is the total lack of control I have over the whole thing. I cannot do anything other than turn up on time, and hope for the best. I have to put my life in the hands of total strangers, and trust them to get me through it. As long as it’s not like Holby city where they are having a domestic over my open abdomen then I’m happy. I think this quite from gladiator shows why I’m frustrated ” Ultimately, we’re all dead men. Sadly, we cannot choose how but, what we can decide is how we meet that end, in order that we are remembered, as men.” I cannot do anything about this. As soon as that anaesthetic goes in, I’m relying solely on machines and strangers to keep me alive.

Sorry but I’m going get morbid, sometimes it helps me to rationalise it all. I can only hope that the majority of the time I have had a positive impact on people’s’ lives and that’s how I would want to be remembered. More gladiator, ” What we do in life echoes in eternity.” I can only hope I have had a positive impact and if I hadn’t, well fuck you because you probably pissed me off 😛 Thing is though, in the grand scheme of society I don’t feel like I have given much back because I haven’t had the opportunity because of this fucking illness. So hopefully as of tomorrow I can start.

I’m on a serious Gladiator thing tonight, watched it last night and I love that film. “Three weeks from now……..Imagine where you will be, and it will be so. Hold the line! Stay with me! If you find yourself alone, riding in the green fields with the sun on your face, do not be troubled. For you are in Elysium, and you’re already dead!” Amen to that.

It did freak me out earlier when I got out of the shower and looked in a full length mirror. I’m not a particularly vain person at all. I will leave the house looking like a tramp regularly if I feel like it. However, I realised I am never going to look like that again in less than 12 hours time. In fact, it reduced me to hysterical tears for about 20 minutes. I know that it’s a new beginning for me though. I’l get over it.

Last time i will ever look like that.

If people are looking to visit check my facebook, I’m going to put a large status up with all the details you need to come see me. I’m not gonna have any visitors till Monday unless I am very well and on my feet etc. I’ll put my old dears phone number up so just ring her for any information you want.

“Ready your breakfast and eat hearty… For tonight, we dine in hell!” aka the royal London. (alrite the last and first were 300)

Step One: Begin vomiting words onto laptop

Where on earth do I even begin. The begging I suppose.

Right, well about 2 months ago I walked into St. Barts hospital, up to the first floor and instead of turning right as I normally do into the medical outpatients wing I turned left into surgical outpatients. I was due to see a surgeon for the first time to discuss ” the possibility of surgical options” which is a nice way of saying we definitely need to chop you  up a little bit but don’t want to scare seven shades of shit out of you.  I checked myself in and took a seat. To be honest, I can’t even remember what was going through my head, I think on a subconscious level my brain was stopping me from thinking about it. I don’t remember walking into the consulting room just vaguely bits of the conversation, I don’t know if that just because of my abysmal memory or because I had so much going through my head at the time.

To cut to the chase, and my god are these people blunt about what has to be done, they want to take all of my large intestine out, leaving me with a bag for life, and I’m not referring to those big orange fuckers from Sainsburys.

Yes sports fans, I am due to have an epic bit of shit surgery, but on the bright side it will be keeping me alive for the forseeable future and if I can get my head round it, it will only improve my day-to-day quality of life. They want to do it as I have a 20cm stricture in my large intestine and a shed load of active disease aswell. So they figure fuck it, lets get rid of it all and be done with it.

I’ll sum up the last few years with the main points of the story. Now I have been in a pretty sad state of affairs for the last 4 or so years. I was first properly diagnosed with Crohn’s disease in my second year of University and eventually in my 3rd year it had become so bad that I was hospitalised for a short stint, although it seemed like years. see below.

This is what happens when you don’t eat all your vegetables

So during my stay I was fitted with one of the above bad boys, a naso-gastric feeding tube, aka a long yellow straw that goes up your nose, down your throat into your stomach and feeds you with this ideal diet which helped to pack weight on me. This was because at 6′ 2″ and weighing under 8 and a half stone I was massively underweight.

Since then I have been on various drugs, some which work, some which don’t. Currently I inject myself once a week with Humira, a drug, which to be fair, has worked wonders for me although it does have some pretty shitty side effects that I have somehow, so far, managed to avoid. Also I’m on Azathioprene, another immunosuppressant, and clomipramine, which is for my fantastic anxiety attacks I get due to constantly having to worry where the nearest fucking toilet is every second of every day.

Now since being diagnosed, I just about managed to graduate university in Industrial Design with a 2:2. I’ve only managed to do one full-time job, and even then I struggled. I cannot tell you how much I hate not being able to go out and work a full-time job and earn a half decent wage. At the moment, I have been properly signed off work until after this operation.

I go and see my surgeon in just under 2 weeks, where they will discuss the procedure with me in-depth and put me on the list for surgery which unfortunately does mean another 3 to 4 week wait till it actually gets done.

I’m now at the point in my head where I just want it over and done with. Its going to be a shit procedure with bullshit things like having to have catheters and drains hanging out of me when I wake up and then 2 months of recovery at home, but if and when I come out the other side of it my life should change dramatically for the better. I’m so fed up of spending what feels like half my life in various toilets and having my life dictated to me by some shit fucking disease whereby I can’t go out and work, I worry anytime I leave my house and only feel comfortable enough to venture to a handful of places.

However, hopefully soon all of that should change =D

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