World IBD Day!

Today is world IBD day! The aim is to spread awareness about Inflammatory Bowel Diseases. Now one of the reason I guess that maybe this isn’t one of the most publicised conditions is because nobody likes talking about poo. Shit, crap, shite, dung, fecal matter, chocolate export, bum nuggets, logs, big jobbies.

Anyone can develop IBD – and at least 261,000* people are affected by Ulcerative Colitis (146,000*) and Crohn’s Disease (115,000*) in the UK – Although recently published data suggest that this could be as many as 620,000.

The illnesses can occur at any age, but often begin in younger people aged 10-40. There are up to 18,000* new cases a year. Both conditions are found worldwide, but are more common in developed countries.” *Figures published by NICE Guidelines (2013)               – Website for National Association for Crohn’s and Colitis

As many as 5 million people around the world suffer with IBD. It can cause a variety of symptoms from fatigue, weight loss, anaemia, abdominal pain, generally feeling unwell and of course the big one, the shits. Now that last one was something I got bad. I was going 50+ times a day when I was at my worst. I lived in that fucking toilet, watching whole bloody series of 24, and full feature length films in there.

Today is about trying to make people aware of this illness and its symptoms. In hindsight, I should have gone to the doctor about 6 months before I started to have problems but of course, your bowel habits change when you first get to uni and you instantly put it down to a bad diet, drinking too much and generally a poor lifestyle and you can even convince yourself that for six months because you don’t want to go and talk to a man in a white coat about your poo, how often you do it and of course its colour and consistency.

If I hadn’t hung around and maybe actually gone to see a doctor, who knows if it would have got as bad and as advanced as it did. You can’t live in the past and i now have to crack on with my current situation. What I would urge other people to do is not sit on their hands out of embarrassment. I mean come on we have all watched embarrassing bodies and jesus christ GP’s must drink a lot to un-see some of the stuff they have seen, so by that standard talking about your poo for 10 minutes pales into comparison. What if I had gone 6 months earlier and they put me on 1 tablet and that sorted everything out and I never had another problem, now I will never know. I don’t want you to put yourself in that position where your left wondering like I am.

Luckily now with all the advances in modern medicine we can fight this horrendous illness with various tools from drugs to surgery. Medical research is so important I have essentially scraped the barrel in terms of drug based treatment. I was on infliximab and then humira, both biologic TNF inhibitors, trust me wikipedia can explain what they are better than me. Now they are essentially the last line of defence in the war against crohn’s because once they become ineffective there is only surgery. Saying that, I think one more has just been developed but I need to do more research into it. So research as ever is still so important to winning this battle. So if you can spare it, donate a couple of quid by text. Just think of it as me saving you from having a couple of drinks and that hangover not being so bad. You can find the details below. Oh and a picture of me swagging out with my bag out #getyourbellyout

Get your belly out

Me 1 year and 9 months after surgery looking a darn sight healthier!

You can now donate to Crohn’s and Colitis UK by sending a text message from your mobile phone.

 Just send a text saying CCUK14 and your donation amount to 70070

e.g. If you wanted to donate £5 you would text: CCUK14 £5 and send it to 70070.

The full amount of your text donation will go to the charity.

text donate to Crohn's and Colitis UK

 

“The strongest of steels are forged in the strongest of fires”

“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)

“Man Down!” The call to man up.

I only managed to catch the last twenty minutes of the new series of “Our War” on BBC3, but that twenty minutes was packed with more emotion than most feature length films. To watch the extraordinary lengths soldiers will go to, to save the life of another soldier. I recommend anyone watch it on BBC iplayer or the next episode is next week. Luckily I caught it replayed later on and it was gripping viewing. You see how soldiers will go above and beyond the call of duty for their mates and not hesitate to put themselves in harm’s way.

For example, flying a Chinook helicopter in zero visibility, following an apache using Infra-red cameras to guide the way, in a sandstorm to pick up a wounded soldier who had stepped on an IED. Where most pilots would have refused to fly, these pilots didn’t because they knew that they were his only hope of survival. They managed to evacuate Captain Griffiths back to Camp Bastion and then back to Birmingham where he was with his family and they could speak to him. Unfortunately Captain Griffiths died twelve days later from his wounds, but his parents couldn’t express their gratitude enough to the men and women who helped to evacuate him so they could have those twelve days with him.

Amazing program, kind of puts my problems in perspective. I’ve got a new date for my operation, the 31st of August. It’s starting to all get very real and soon again. Although I do have to go in 2 days before and have an echocardiogram, which is basically and ultrasound of my heart due to the fact my resting heart rate is 110. Now I assume they would only cancel my op if there was something like a massive gaping hole in my heart, which let’s face it, I probably wouldn’t be sitting here now if that was the case. So yes life changing operation soon, scary times. I’m sure they won’t cancel it again, if they do I will kick off majorly and I’m normally very laid back when it comes to fuck ups, especially in the NHS but to cancel it twice would take the piss a little.

All I am doing at the moment is concentrating on what I am going to be able to do after this op and just ignoring all the shit bits I’m going have to deal with on the way i.e. a tube up the cock, (can you tell that one realllly bothers me?) because when I come out the other side life is going to be fucking mint. I am going to do loads of shit I haven’t been able to do for years like get a proper fucking job, get on a tube, go camping, all sorts. Simple things I used to take for granted. A good friend of mine has decided that he’s going to sign me up for a tough mudder in janurary, have a google, it’s like a 10km obstacle course on steroids with horrendous obstacles ranging from underwater tunnels to running through some form of electrified corridor. So I have an actual target to aim at being fit for. Well we shall see how it goes, let’s get the op out the way first eh.

Low blow from the NHS

As you may or may not be aware, to an extent I seem to have dropped off the face of the earth in regards to writing my blog. I have had this page open for days trying to write it but for some reason I cant.

So basically, after totally mentally preparing myself for this impending quite serious op I get a phone call no less than 48 hours before I am due to go in, informing me not to attend on Saturday and my operation is cancelled. EXCELLENT………do you detect a mint fresh hint of sarcasm? Basically I was put on a day surgery list not an inpatient list, the hospital realized this, and said that someone had made an error and put me on the incorrect list. When I asked if they had any idea of when I would now be looking at for surgery, they replied that basically they didn’t have a clue as I would have to be put on the correct list, and in effect start from scratch. Excellent.

I was so ready for that operation, for any outcome good or bad and then at the last second to have the rug pulled from under your feet and plunged back into uncertainty is pretty disheartening and shit quite frankly.

So shit in fact that I have had this document open for nearly a 2 weeks, unable to finish it because I am doing everything I can including drinking copious amounts of alcohol to ignore the fact that this has happened and I guess when I look at this I have no choice but to deal with that fact. On one hand, I’m so relieved that I haven’t had to have this operation. It’s a serious game changer, hopefully for the positive but I won’t be the same person I used to be and the big bit I worry about is how I’m going to see myself every day in a mirror, dealing with my self-image, and having scars, a bag, being comfortable around other people with it. To say I am shitting bricks is putting it mildly, I am terrified, honestly sometimes I think about it and the fear is so great that my stomach goes, like the split second after the rollercoaster takes that first massive drop. I also feel bad writing this, like I will offend people who have already had the op and are on the other side of the hill. I suppose really what it comes down to, is I’m scared how people will react, especially in different situations. I am sure that 99% of people will always react positively but there is always that cuntish 1% that will deal with it poorly. I mean don’t get me wrong, everyone is entitled to their own opinions but sometimes maybe just dealing with something sensitively would make a whole world of difference.

Yyou know what, there will be people that can’t deal with it and find it disgusting or whatever but at least most people will be fucking polite about it. At the end of the day I’m having this operation to save my fucking life! If I don’t have it, then at some point I WILL DIE. You know what, fuck it, I don’t care. I have bigger fucking problems than worrying about what other people’s opinions are.

On the other hand, I just want it over and done with so I can go back to work and have an income again, and go out without constantly worrying where the fucking nearest toilets are. I mean at one point I was practically looking forward to it! So we are now knocking on for 2 weeks since I was meant to have it done and I have heard absolutely fuck all from the hospital. The biggest thing I hate is just this constant uncertainty and sitting in limbo waiting for a phone call that doesn’t appear to be coming any time soon . Now that I’ve been placed back into limbo I am nowhere near as mentally ready for it as I was and I’m going to have to go through the whole fucking process of psyching myself up again.

I’ve got a few scalpel blades, needles and thread, etc lying about from my design work, surely I could give it a crack, love a bit of home surgery 😛

D-DAY T-Minus 10 Days

Well I am now officially, well and truly shitting my pants. The hospital have just called me and given me a date for my pre-op assessment on the 16th July and the date for the actual procedure on the 21st of July at the royal London. I am more nervous than a sex offender at a nudist beach. On the one hand its good because it gets it over and done with and I can get back on track to having some kind of normal life. On the other hand, I just really am not looking forward to the whole series of events, being cut open, catheters etc. I’m not particularly vain at all but I keep looking at myself in a mirror and realise that, well in 10 days time, I won’t look like that ever again. Not that it’s a bad thing, just different. I don’t know, maybe on some level I am resentful, why me? etc. but you can’t sit around and bitch and moan otherwise that’s all we would spend our lives doing. Time to get my head down and crack on.

“Courage is not the absence of fear but the judgment that something else is more important than fear. The brave may not live forever but the cautious do not live at all. For now you are traveling the road between who you think you are and who you can be.”

Future Prospects

One thing I’m looking forward to, other than not living inside a toilet cubicle anymore, is going out and applying for jobs I want to do. However, this is still quite bitter sweet for me as all I ever wanted to do since a young kid was join the army and be a soldier. I wanted to be in the infantry, at the sharp end of the sword so to speak. At the time of my diagnosis I was in the process of starting to apply for the Royal Marines Reserves (RMR) whilst at uni. I had been training hard physically in the gym, funnily enough not putting on a lot of muscle mass (all clear in hindsight though). Now I was noticing I was having a harder and harder time in the gym, I was running out of steam quicker than an asthmatic paedophile in a playground, and in hindsight, I was going to the loo a lot more than normal so in the course of things I’ve seen my consultant and eventually a conclusion was reached that I was suffering from Crohn’s disease. I was literally about to send off the application paperwork before I got diagnosed (oh did I mention, I only went to university to get a degree so I could join as an officer). So I get home and think “hrmmm better have a quick check on the interwebs and see what the army has to say about this crohn’s disease malarkey” Low and behold it is on their list of “not allowed” medical conditions. After having a good root around and researching it I found that trying to get into the army with crohn’s is like trying to stop the priests from molesting choir boys, it’s just not going to happen.

So as you can see this threw a large fucking spanner in my works as it totally took the rug from under my feet and whatever direction and motivation I had in my life away from me. All I had ever want to do was join the army, I fucking lived and breathed it. Now the closest I’m going to get is sitting on my xbox playing Battlefield 3 spending most of my time being slaughtered by 12 year old American kids who have probably already been accepted into the US army and this is their basic training. Either that or paintballing. Either way, it’s not exactly the real deal. The remaining problems are that any jobs I have any interest in doing either may not let me in because of my condition and future surgery or if they do, I may only be able to do restricted duties, saying that I don’t know, I haven’t properly researched it yet so I may eat my words at a later date. One other job I have an interest in doing is maybe the police, however, after an initial bit of conversation with one of their medical officers at the very least, I’m going to have to jump some hurdles, and as for having an ileostomy, it will be a whole new ball game I need to ask them about also.

In life though, one door closes and another one opens, so I am now having to look at doing other jobs. There are still a couple I may be able to do that interest me, I still love design and working in jewellery. I may just get back into that with a vengance, saying that who knows, I could decide to become a magician and become world famous and get a job doing shows in Vegas, mutilating unsuspecting audience members when I fail to cut them in half properly. It’s all about looking at the positive sides of it all and staying focused on that. All I try and think about is all the things I can’t do now, but WILL be able to do after. I mean I am DYING to get fit again. I mean disgustingly fit. I want to be SAS (http://en.wikipedia.org/wiki/Special_Air_Service) selection fit. Just because I can’t join, doesn’t mean I can’t be as fit as I should be to do so. I want to take up numerous martial arts from kendo (http://en.wikipedia.org/wiki/Kendo) to krav maga (http://en.wikipedia.org/wiki/Krav_Maga).

All in good time though, I need to learn to walk again before I can run.

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