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”

Advertisements

Return Of The Mack

So I have been absent from my blog for a little while now. I intend to turn that around. My life has changed so much since August the 31st 2013. That was the date I had my life changing surgery. I am now sat  here thinking about how I don’t want to have to go to work tomorrow whereas I used to sit at home utterly depressed about how I spent every day staring at the same four walls interspersed with episodes of Jeremy Kyle, wanking and of course shitting. That was pretty much my life for nearly 3/4 years. I can’t even accurately keep track in my mind because it just seemed to blur into one big haze of shite.

 

Now I have spent a year working for a large corporate estate agents in north London. It’s not something that I intended to get into but they were the first people to say yes. I had a couple of friends that were in the industry and I figured, hey people are always going to need to buy houses! The one thing I have realised is that I am never ever ever going to have a fucking snowballs chance in hell of being able to afford a mortgage or save up a deposit. Going to work every day with a colostomy is now totally natural to me. At first it was so alien, it scared the life out of me. What if my bag leaks? What if someone notices it? What if, what if, what if? Of course there have been a couple of “close calls” for want of a better word. The worst was when I had a gentleman sitting at my desk giving me the details of his property so we could arrange a valuation, which takes about 5 minutes, and I notice the foulest smell that I recognise unfortunately to be me. It was like a mixture of decaying donner kebab mixed with a tanker of crack head arse sweat. Now I instantly noticed the smell, then I watched the poor gentleman’s face change as he has started to chew on my floating arse biscuit. I watched the colour drain from his face as he thought about smashing his face into the desk to end his pain.

 

Shits gonna happen, excuse the pun. However, luckily so far these events have been few and far between and generally I’m pretty confident about my situation. Yeah I have to remember to carry bits and bobs round with me and I’m a bit more self conscious with my clothes and what you can see. For example I have just booked my first holiday in seven years and my first post-op holiday. I am bricking it a bit, leaving the safety of home, the UK, the NHS, my family and all sorts. Having to get my pale and now slightly chubby body out on the beach or at the side of the pool. Now that I find more than a bit nerve wracking. I used to, and like to think part of me is still doesn’t care about what people think of me, within reason. I mean of course, I worry about what my friends and family think but not total strangers. Sadly I now have to admit that there is a part of me that does worry what people think of me, how they will react if they know I have a colostomy. I got told by someone that had already had the operation that ninety-five percent of people that you tell or find out will deal with it well, there will always be that 5 percent that are total wankers. I have heard horrible stories about other peoples reactions from other people with the same condition that have made me want to take a chainsaw to the offending numpty’s skulls. You know what though, I cannot wait to spend seven days in the sun with my missus and a couple of really good mates. 

 

I’ve managed to work for a year a year now with minimal problems from my illness, the only bad thing at work is when I go in with a raging hangover. Yes I am still drinking unfortunately and am, of course, continually promising to stop drinking but I have cut it back. I am also still smoking, again I have cut that back and I do intend to pack it in. Half of me has the attitude that I’ve been through hell and I have the right to let my hair down and do what I want. However, the sensible side of me is in a headlock from the rebellious side as its trying to mumble “Oi Hastie! You peenarse!” You were convinced you were going to die and you didn’t, and you’ve been given a fresh start minus the active Crohn’s. Why are you acting like such an unhealthy dick?” 

 

Honestly, I don’t know why. Like I said I feel like part of me has earn’t the right to live how I want to even though I know it might not be that good for me in the long run but I do need to change it. I’m going to join the gym at the end of the month. The aim is to go religiously 3-4 times a week eventually, for at least six months. I used to be so motivated to get fit as it was working towards a goal of joining the military but because now there is no goal like that I have totally lost all the motivation to do any exercise, well other than this new fangled spare tyre looking thing I’ve got affixed around my waist.

 

I’ve managed to start doing a few things that I wanted to pick up when I was healthy again. I’ve been going clay pigeon shooting more and more regularly and now am looking to get my own licence and gun as its so much cheaper if you shoot regularly. I also sailed with a crew of 5 (including me), from Ipswich to Vlissingen in the Netherlands. We then spent a week going round the various lakes and canals, drinking lots of dutch beer, which by the way is fantastic. Unfortunately we couldn’t head to Amsterdam due to weather and time constraints. I had such an awesome time, even though I found out when I got home that I had broken my foot on the second day and continued to hobble around all week being called a pussy and being told I had only banged it. Thanks guys. Nearly as good as the time on that holiday when I dropped my freshly purchased large donner kebab in front of a group of about 50 people coming out of a club. Mildly embarrassing.  I couldn’t have done any of this 2 years ago due to what I was going through at the time and it’s made me so glad that I had the operation done because it really has given me my life back.

 

Ok there are some things that I really will never be able to do again, well it would be sensible to never do them again such as contact sports like rugby, boxing, martial arts. All things, that in an ideal world, I would like to have given a good go at. I mean I guess I could do these things but I can’t imagine going into a ruck in rugby with a full bag would be the smartest Idea. Although potentially it means people wouldn’t tackle me due to the fear of ending up coated in fragrant material. 

 

At the end of the day these are small losses in my eyes. I still can go and enjoy watching England play at twickenham one day, because lets face it I was never going to be that good, walk of hours in the woods, get on the tube, go to work and generally live my life.

 

Small prices to pay for the ultimate prize.

 

Me and Emma

Me and the missus after a day of shooting

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.]

Better a bag than a box

So I’ve just been to St Bart’s Hospital to see the surgical team for what should be the last time before I actually go in for surgery. To be honest it actually went a lot better than expected other than the fact I was categorically told I am having a catheter whether I like it or not. So much for not adamantly demanding not having one. However, other than the fact they’re going to ram a tube up my cock the prognosis isn’t actually as bad as I thought it was going to be. Looking at the last full colonoscopy, active disease is limited only to the last part of my descending colon near my ever temperamental arsehole. So initially they are going to remove the affected section of colon and leave me with a colostomy preserving as much health large intestine as possible. However this may change should they open me up and find that more of my intestines were affected than first thought. So I have to hope for the best and prepare for the worst. Generally though the outlook is much better than I first thought, they didn’t want to get my hopes up, but depending on if there is healthy tissue near the rectum they may be able to construct and internal pouch later on, however that’s a big “if” and I am to work on the assumption that that isn’t happening and I am going to end up with a permanent colostomy.

So hopefully I won’t be losing all of my large intestine which would be a right result. But I’m not going to know what has happened till I come round for the surgery. The surgery itself should only take 3 or so hours and they are going to attempt to do it laparoscopically which should be fine as I am relatively young and fit so I’m told. This also means the recovery process should be quicker than if they have to cut me open properly. Basically, there are a lot of ifs and buts and I am just going to have to wait and see what happens.

I’m still metaphorically shitting myself at the whole prospect of this and I had to stifle a giggle when the registrar today remarked on how calm, and accepting I seemed of everything. Well, I don’t really have a choice but to be calm and accepting. “It is foolish to fear what you cannot avoid.” (Stultum est timere quod vitare non potes) Publius Syrus. I’ve done the whole getting angry and then getting upset and no good comes of it, although I believe it is a process I had to go through to get to where I am now. I know that pending I don’t die on the table, I should come out the other side of this just fine and my whole quality of life should sky rocket. So now I have to wait 6-8 weeks before I even get called in for my pre-op assessment so more time to ponder exactly how much I don’t want and angry nurse ramming a plastic tube up my cock hole. I mean I’m quite happy for them to slice me open from sternum to groin but come near my bell end with a pointy bit of plastic while I’m awake and I won’t be the only one who will be needing surgery that day! Fucks sake. It’s got to be done though. At least I’m not on the Jeremy Kyle show.

Blog at WordPress.com.