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Posts Tagged ‘Ulcerative Colitis’

UC Diary: Update and Adalimumab

Posted by DeadAnarchistPhil on June 17, 2020



I’m writing about my experience with the drug ‘Adalimumab‘ to treat Ulcerative Colitis and the illness itself. Your experience will differ as people react differently. So please don’t dismiss the drug based on my own or anyone else’s experience.

My Ulcerative Colitis has been getting steadily worse for nearly 2 years now, I’ve tried everything I can to get it under control, diet and exercise being the… well… only ones I have been able to try.

The diet seemed to work – sort of – for nearly a month, but then suddenly the UC went bad again, which has been happening since I developed it in 2005, it’s never fully gone away, it just sort of gets less worse.

It’s difficult to explain how my UC affects me, I can write a list of symptoms, but this doesn’t cover the nature of my UC. It’s just so damn random, for instance, when I say it just gets ‘less worse’, I can have zero symptoms for a few days to a week (normal), but then it’ll get worse again, with no warning.

It doesn’t just stop there, I can have symptoms but not go to the toilet at all for days. An example of this is I could have urgency (wanting to use the toilet) so I go, but nothing comes out. However, I still get the cramps, tiredness, feeling sick and sweating etc. And I’m like that all day. The amount of wasted days I’ve had, when I’ve wanted to do something or go out, and because I feel like I may go at any time, I stay in. There’s a chance I develop symptoms and that I may soil myself, but there’s also a chance I couldn’t. What do you do?

Yes there’s outside toilets, the thing is, if I do go I could be in there for over an hour! All the while, feeling ill and having all the symptoms (or not, but still be in there for a while with the urgency). Then I have to think about getting home asap, the amount of times I’ve rushed home because I’m at serious risk of soiling myself!

There’s also another interesting thing my UC does, I don’t know if anyone else’s does this but let me know if you do, when I’m having cramps and I’m getting urgency as soon as I move the cramps and urgency get worse! I have to literally sit still, for hours, every day, because movement will make me go to the toilet again and I won’t stop going just because there’s no poop left to come out. Oh no, then I produce water and carry on producing blood (if that’s happening that day).

So, just imagine, you’re going out today, you have a lot planned, but you feel like you need a poo, but nothing happens. You do this several times with nothing happening. Do you take the risk and go out? Remember at this point you just feel like you need to go, there’s no other symptoms yet. And you could be like that, all day! Then on other days you don’t just have the need to poo (which you will do several times) you have cramps and everything else on top of it. So you’re sat there, having been to the toilet several times, with an arse that feels like you wiped it with a hedgehog, and your insides threatening to go again the more you move.

There’s another weird thing, just imagine the above again, but then suddenly remember you have to clean the house, build that fence or get annoyed at something. The stress trigger! That can also cause you to go to the toilet and make the UC worse. So you’re sitting still, but, you have a stray thought and then that sends you to toilet once again. So sitting still doesn’t always save you from repeated toilet visits.

The only thing I’ve found that soothes the cramps is a warm shower (hot water bottles and heat blankets don’t work), but that doesn’t always work as at times you have to get out and use the toilet. Other times it works, but as soon as you get out the cramps come back.

Then there’s the tiredness, it’s like it saps your energy. I’m going to stop, but you get the idea. Oh, I just remembered, I’ve removed different foods and even abstained from milk for years and even cheese, it did nothing.

Anyway, given that my UC is obviously active (specialist said otherwise, she was wrong), my IBD nurse (note: my IBD nurse is not the specialist) suggested new medications called Biolgics. I resisted for over a year as some of the side-affects, namely irreversible degenerative nerve damage, put me off. There was also the fact I would be on my old immunosuppressant medication while taking the new one, this is so I have coverage while I wait for the new medication to kick in. However, this would leave my immune system reduced even further – in a pandemic. In the end I acquiesced as my UC got worse and I was forced to think about my quality of life.

The first I was offered was Infliximab. This was all agreed and I was due to start this early this year (2020). However given that I’d need to go into hospital and have it administered via an intravenous drip while there was a pandemic going on, I declined it. So in the end I settled on Adalimumab, which would only require a nurse to come out once and show me how it to use it. It consists of a 40mg measured dose administered via an injection pen. The first time in April I initially had 4 injections of 40mg (160mg) as a starting dose, then 2 40mg doses two weeks after that, then another 2 40mg does 2 weeks later. After that I have 1 40mg every 2 weeks (with scope to increase).

So far, 12 weeks later (the latest when I’m supposed to see the first signs of improvement) things have not improved, in fact they’ve become worse. I still have a month left, that’s when I should see definite improvements, if indeed I do, so I have to wait. However so far there’s been no improvements and personally I’m not hopeful there will be.

On a side note, side-affects have been few. I feel tired when I take the medication, but that’s common. I did start getting aching in my knees and left elbow, though I’m not sure the medication caused this as Adalimumab is used to treat inflammation of the joints too.

I’m going to stop now, I’ve gone on enough. I’ll reply to any previous comments and new ones when I can, it depends how I am, but I will reply!

Posted in Health and wellness, Ulcerative Colitis Diary | Tagged: , , , | 4 Comments »

Hypnic Jerking!

Posted by DeadAnarchistPhil on August 7, 2019


Well I should be asleep but I keep dropping off and then jolting awake again. Apparently it’s called Hypnagogic Jerking, if someone had asked me what that meant before I looked it up I’d swear it was something dirty.

Anyone can get it, though people who are sleep deprived, who drink stimulants, have distorted sleep patterns or exercise more closely to bed time are more likely to have it.

I think mine is through a distorted sleep pattern, I’ve felt ill the last 3 days, and on Monday afternoon I went for a kip because I was so tired and had a headache. I ended up pretty much sleeping from 5pm Monday through to 4am Tuesday – and I’ve been awake since.

The cramps and gurgling in my side aren’t helping things either, the UC decided to smack me hard in the chops today. I felt tired and ill all day, but I had a dentist appointment – which I’d already cancelled once before last month due to the UC – so I didn’t eat or drink much on Monday or early Tuesday (My appointment was for 1:30). Still went to the toilet 2 or 3 times before I left. Although not eating or drinking much won’t stop the UC from doing it’s thing, it can minimise the chances of having to visit a toilet or having an accident. I made it there and back without any issues anyway, took my ‘Just in case bag’ too! After I got back I ended up going again 2 more times.

An IBD is like a private British rail company… so inconvenient and unreliable that you may as well stay home! I just thought of that because a train not long went past… You can judge me for that one if you like btw…

Anyway, I’ve waffled enough… I’m going to toddle off and watch a few episodes of Legion series 3. It’s based in the Marvel Universe and revolves around a powerful mutant who has the power of absorbing other mutants minds and powers. There’s a lot more to it than that, like the whole series is viewed through his (Legion/David’s) distorted view of reality, with a lot of weird and strange things that make you “WTF?” a lot. Case in point, The Vermillion…


I’ve been a Marvel fan since X-Men in the early 90s, but it doesn’t mean I like every marvel TV series as some of them are just typical American action hero-y. While Legion is far more complicated, psychological, moral and philosophical, as well as straight-up crazy!

Posted in Health and wellness, Ulcerative Colitis Diary | Tagged: , , , , | 13 Comments »

A hit and a miss!

Posted by DeadAnarchistPhil on April 30, 2019

Hit and a miss

This has almost happened to me several times! However, I can confirm I did not break the toilet away from the wall and nor did I fall head first onto the floor. I just broke the toilet seat.

In other news I’ve been getting acquainted with my Xbox, when I’m not feeling ill of course, and it’s been quite good getting back into gaming again. It’s been good especially as I can’t go out as much now.

Anyway, I was editing my profile on there yesterday and went to add my ‘Hitler Ballerina’ picture to it, as it turns out pictures of Hitler are frowned upon, even those mocking him. So I received a ‘suspension’ for a day. Luckily I only got banned from editing my profile and other non-essential things that won’t stop me from playing games.

Microsoft have always been funny and ‘selective’ with their idea of what violates their terms of service. When I used to have a ‘Windows Live Space’ they banned me for posting pictures of people with cancerous growths as part of a piece I wrote on smoking. And yet there was some sites on their with full frontal nudity and other sorts of TOS violations.

It’s the same on Xbox live, someone I know on there had a picture of Joseph Stalin for a laugh, and the last time I looked he killed more people than Hitler. Look at the chart below…

Massive Cuntbags

My point is, if you’re going to ‘suspend’ people for breaches of your terms of service then you should do it across the board, not be selective. Not that I support such bans.

I think history forgets the horror and violence of despots like Stalin and Mao Zedong, though I think that’s another topic for another blog.

Right, I’m off, be safe out there, especially around the toilet if you have an IBD or IBS!

Posted in History, Hobbies, Ulcerative Colitis Diary | Tagged: , , | 3 Comments »

UC Diary: The Ulcerative Colitis Kid Get’s a Sigmoidoscopy!

Posted by DeadAnarchistPhil on March 31, 2019


Listen to this guy, he knows what he’s talking about!

When you have Inflammatory Bowel Disease it’s routine to have a colonoscopy or Sigmoidoscopy, which are procedures where a camera is inserted in to your bowels to confirm the extent of your illness, or as a routine check-up to monitor progress and symptoms – to see if they’ve become worse lately.

In my case it was the latter. I’ve been having unsettled symptoms for some time, and yet the blood and Calprotectin tests – that look for signs of inflammation – have come back with only minor signs of inflammation. That basically means my Ulcerative Colitis was not considered active. The last few times when I had these tests done I didn’t see my regular IBD nurse (because of lack of staff during the ‘Winter Crisis’ we have each year), who would take me more seriously if I said I had symptoms, as she’s known me nearly 10 years and been a IBD nurse even longer.

So, long story short I saw her back in January of this year and explained my symptoms are more unsettled than usual, my UC has never fully gone into remission, so I’ve nearly always had symptoms to some degree. So she suggested I have a sigmoidoscopy, which is the investigation of the rectum, sigmoid colon and the descending colon (basically the bottom and left-hand side of the large colon). I was reluctant as preparing for the procedure can be annoying and the procedure itself can be uncomfortable. However, I wanted to see the true extent as the specialists had been saying I could have a case of Irritable Bowel Syndrome, which people with Ulcerative Colitis are prone to develop as the large colon will always be sensitive, regardless of remission.

It seemed plausible, the tests had showed very little inflammation and the symptoms could be explained by IBS which I had a predisposition to. So I accepted and was booked for the procedure a few weeks later.

Now, for those who are reading this that may be getting the procedure done, please don’t worry, read to the end.

Two days before you have the procedure done you have to take the bowel prep, which – I’m not gonna lie – tastes horrible! There is no need to go into details here as it does what it’s supposed to do, clears you out, apparently! The hardest thing about the bowel prep is not eating properly the day before, the way it sends you to the toilet are just like normal Ulcerative Colitis anyway. There’s nothing special to report about this part.

The fun started the morning of the sigmoidoscopy. I woke up early as I was due for the procedure at 10am. It’s a good that I did as I had a missed call from my sister who lives in the same building. Figuring it was for me to help her with my niece I rang her and found out the electricity had gone off to our whole block, the surrounding estate and even affected the traffic lights.  I’d just woken up and already traffic was worse than usual and I can’t even have a shower or a wash as everything in the block was recently moved to electricity, even the pump that moves water up to the taps. I thought, “It would have to happen today, wouldn’t it?”

My sister was planning to take my niece to day care but couldn’t as she lives on the top floor, and her boyfriend had already gone out to University. In light of the lifts being off she was going take a day off and look after her. So I said we don’t know how long things were going to be off for anyway, then told her to sort her stuff out and that’d I’d help her down the stairs then get to her car and she could take us to our Mother’s house. There was a bit of risk with that as physical stress can set the UC off at the best of times, having taken a powerful laxative and carrying a trolly and a bag full of assorted baby things down stairs had bad written all over it.

I got off the phone and ended up going to the toilet, as the laxative was still doing its job. After washing my hands in what felt like half a bottle of anti-bacterial gel – as there was no running water – I grabbed my toothbrush; spare pair of everything; toilet roll; wet wipes; medication, change for taxi and a few other bits, still feeling like I’d forgotten several things. As I went out the door I remember noting to myself that if there’s ever a long-term blackout again, or… god forbid… a zombie apocalypse, then sod all would work in my block.

Aaaanyway! After getting my sister and niece out the flat we walked down the staircase, passing other residents on the way, some going down and some coming up. On the way down I wondered if the carpark gate was open, so my sister said she’d check with security. Once we got to the bottom my sister joined a huddle of tenants and staff who were talking in the foyer to check if the gate was open. I thought she’d be there a moment, but as I turned back she was fully immersed in the huddle as I looked back from the end of the corridor. As I did that I ended up getting ambushed by neighbours and staff who wanted a chat, but my insides were turning over and I couldn’t muster much in way of conversation. So after a short chat I shouted to my sister “Time is the of essence!” And with that we were off to the carpark for the car, obviously my little niece didn’t want to go in back and played up – bless her cotton socks. She was put in the back anyway with me to keep her happy and calm and we were on our way.

With my insides still turning over, feeling like I may fill my kecks, we run into traffic before we even got out on to the main road. I thought “Fuck you Universe!” The roads around my block are jammed weekday mornings as it is, but with the traffic lights it was backed up so badly! The irony was our Mother’s house was a short 5 minute walk away; it took us 15 mins or more to get there, with bibbing horns and one car driving up on the walk way to get around!

After getting to our Mother’s my sister took my little niece to day care and I went in the house and checked if it was ok to have a shower. My Mam said yes, but she was about to get one first, I sighed, because I know my Mam can take ages in the bathroom! I noticed at this point my abdominal cramps and urgency pain had gone, so I sat down to watch a bit of TV. Cramps then came back without notice, as always, luckily for me (and my Mam!) she has a downstairs toilet!

After what felt like half an hour (though it was probably less) my Mam had finished and I got myself a shower and brushed my teeth. “Fuck yeah! I’m clean!” For those who don’t know, I like to be clean in general, but especially so as I have an IBD and taken a litre of powerful laxative.

So I went to get dried, took clothes and toiletries out and pulled my medication out by accident too – for the first time! “Fuck off Universe – just as I was feeling better!” Luckily I found them all, got dressed, sorted and went down stairs to see if my Mam was all ready to go (My Mam insists on coming with me to most IBD appointments for reasons I can’t go into here), which I sort of already knew the answer too. Got down and she wasn’t set to go! Using my inside voice I said “For the love of Satan’s balls!” I wouldn’t mind, but she does it every time.

During this time my sister had come back from day care and was waiting for the traffic to ease. While doing so she insisted on eating food in front me that she’d looted from ole Mother Hubbard’s cupboard! Pure. Evil. Doesn’t she know I’m starving?! I suspect she did. While she was relaxed and walling in her own crapulence I asked if she could take us to the hospital on her way into work. Apparently she goes a different way than the Hospital, which is same general direction as her work. If I could’ve slapped the Universe in the chops at that point I would’ve done.

Anyway, evil sister left and me and ole Mother Hubbard got in a taxi and headed for the hospital. As always, there was a problem… horrendous traffic – and I was already 5 minutes late. Then I started feeling ill and that nagging doubt I’d left something behind in the flat earlier returned. “Did I remember my bank card?” (For a snack afterwards!) So I started going through my backpack looking for my card, it was at this point I accidentally pulled out my medication for the second time! I spilled some of them on to the foot space… Lost forever! However, I managed to salvage the others! I then checked all my pockets but couldn’t find my bank card…  I was wound up, feeling ill and now sweating, which sometimes happens with UC. After checking my pockets several times I found my card in one of them, I can only assume that particular pocket is a TARDIS! When we got to the hospital I gave my Mam the money to pay for the cab, turns out there wasn’t enough there. I DID forget something, the other 50p! I’d have paid by card but Taxi firms seem to like living in the 1970s as far as payment is concerned.

As my Mam looked for some change from her purse I rushed into the hospital to book in and instantly went to the wrong floor! If I could’ve done I would have kicked the Universe in the bollocks at this point. I come here often enough, but the IBD investigations are not the same place IBD check-ups are done. In the end I found the right place and booked in, I could sit and relax! Nope!  I had to go to the toilet again. So I rushed to the door to where the toilet is… it’s got a code on it! The nurse tells me the number. Didn’t work! Tried it again… didn’t work! On the 3rd attempt it worked! Got in and in a rush to get my pants off, some more of my medication, which is now in my pocket – flung on the floor for the third time! Have you ever facepalmed on the toilet?

After being in the toilet for ages I came out and waited for another 15 mins and I was called in. They asked me questions they really should’ve known the answers to, but I answered. I was then given a gown and a pair of disposable boxer shorts with a flap at the back, for when the procedure’s done. I was waiting for a while in the recovery ward to be called in, during that time several people came out after having the procedures done and started farting in the beds next to me! It was at this point I realised there really is no God.

While I waited, listening to the sounds of the trumpets, I became thirsty, so I asked one of the 10 nurses busy rushing around for a glass of water; she said she’d get me one. I waited for another 15 minutes, and during that time she looked straight at me 3 or 4 times… I never got that drink of water, but she got an enemy for life that day!

Eventually I was called in and had the Sigmoidoscopy, without a pre-med, as I didn’t want to sit in the recovery ward and breathe in the unspeakable evil that was being emitted from my fellow patients. The procedure itself was the easiest part of the day, albeit uncomfortable, I liked chatting to the Doctor doing it and nurses who were joking with me. As it turns out my UC is active and more extensive than I thought – I assumed it was just going to be Proctitis at the least – but I have left-sided Colitis, which was no big surprise really. However, I felt vindicated after the specialist said I had IBS, I knew I was still ill, though that doesn’t explain why the tests they did didn’t come back positive for inflammation. I think someone done goofed in the lab.

The next step in my story got messy! As the probe looks at the colon wall it uses a little jet of water to wash bowel prep and waste away for a better picture. He must’ve used a lot because when he pulled the probe out the water and mess came with it! That’s never happened before! “I’m wet! Why am I wet?!” I said. The nurse replied “It’s ok, lie on your back”, No, I’m gonna roll in it” I said. I then asked if I could clean myself in the toilet next to the examination room as I wouldn’t have to walk past anyone. She was having none of it, she has to follow procedure. So I reluctantly tried to lie on my back as far away from the big wet patch as possible and get wheeled back to recovery and then rush to the toilet. I thought most of the nurses would be too busy to notice me going to the toilet, how fucking shocked was I when every nurse besides the one pushing me was stood right by the desk next to the toilet, right in front of my bed!

After I was parked up I thought I may as well get me losing my dignity out of the way, after all… I ain’t lying in that mess! So, with my left hand holding my gown on, which had come un-tied somehow, and holding my disposable boxer flap up right hand, I hobbled to the toilet with a mess running down my legs! I took a long time in that toilet cleaning myself, using wet wipes, anti-bacterial soap and toilet paper to clean myself – followed by a lot of anti-bacterial hand wash.

You. Have. No. Idea. The things, man… the things I’ve gone through in life! The indignity!

If you’re going to have one these procedures done, don’t worry… it’s not as bad as you think. The above was one of my worse days, the procedure itself wasn’t an issue, it was everything else going on that made it difficult. I’ve had this done before and it was very straight forward, with no issues or mess. I just wanted to write this to say there’s nothing to fear from having it done, after all… you couldn’t have a worse day than I did! If you have, leave a comment and let me know.

Posted in Health and wellness, Ulcerative Colitis Diary | Tagged: , , , , , , | 1 Comment »

A Pain in the back, a pain in the head and a pain in the arse (basically an update)

Posted by DeadAnarchistPhil on September 15, 2013

Any regular readers or old-time friends who read my blogs will know that I was almost completely absent from blogging last year (2012), and most of this year (2013). For me this is unusual, I can go missing from blogging for weeks or months on end and then come back with something.

However, this time I didn’t. The reason for this? I was preoccupied with my University degree and generally being  and trying to be healthy. For those people who know me they will know how rare this is as I have several illnesses that impact my ability to do many things and go places.

One of the worse of these was Ulcerative Colitis. I was taking Prednisolone steroids to control this in conjunction with Mesalazine. But then I had to switch medication as the medical steroids I was on had given me steroid-induced diabetes (Type 2 Diabetes) and weren’t always delivering consistent results. Since I started taking Azathioprine medication to control the Ulcerative Colitis in late 2011 I slowly got better and it gave me my life back. Now when I say ‘better’ I mean things were good and well controlled but I still had and still do have issues with the UC. In fact after being diagnosed with the diabetes it made me more depressed and this stalled the UC recovery into to early 2012.

As the UC was beginning to get better I was able to be more physically active, something I’ve not been able to do properly for a while. I think I was helped along with this when I had a bad bout of OCD, to stop myself from ruminating and worrying I threw myself in to my exercise regime, which is something I badly needed to do as I was 25st (350lbs/158kgs) and had the diabetes to worry about too. I’d gained so much weight because of years of the UC affecting my diet, so many foods I ate, that were good for me, triggered a reaction with the UC. So I ended up eating junk food, which didn’t apparently do anything. Combine that with lack of exercise because that set the UC off too and being housebound and you’ve got yourself the right combination for more health troubles.

I started off on the treadmill just walking for half an hour five days a week, it was gentle and not too much hassle. I did however get blisters on both my feet and on my toes because my feet weren’t used to wearing shoes for so long and in such conditions. These were huge blisters too! But I couldn’t take time out, it wasn’t an option anymore, so I just looked after my feet and bandaged them when I went on the treadmill.

Gradually my feet got used to it and I started to walk for longer and then jog. I made a game of it, I’d try to jog for that bit longer each time I did the ‘run’ in the run and walk system that I used on there. When I say ‘run’, it was more of a jog for me as running put too much pressure on my back and knees, not to mention the treadmill! I began to develop great endurance and at my best I could jog non-stop for an hour and half. I couldn’t go no more than that because if I did my back would completely give in, I was getting back pain just doing the run and walk system for an hour.

During the times I was doing the treadmill I was also lifting weights too, but not too many and not too heavy. I’d set off my back pain doing weights on and off since the age of 16.

All this paid off as I went from being 25st (350lbs/158gs) to just under 18st (252lbs/114kgs) from November 2011 to August 2012 (though I only started my proper exercise regime in April 2012). I felt great! I was feeling physically and mentally well, the first time in a long while. Things were going so good I moved out of the family home and was even contemplating getting a part-time job, because despite what some people may say the UK benefit system isn’t that great and I’d rather make my own way in the world anyway.

Then came August 2012, the back issues I’d had on and of since I was 16, the ones that made me unable to walk for days and not able to walk properly for weeks, came back! The Doctor who came out to see me diagnosed Sciatica and my GP said the same thing. They gave me pain killers and told me to rest, do some core exercises to help strengthen my back then exercise as usual when back to normal, and if the pain comes back then take some pain killers and carry on. The pain has never gone away and I could not possibly exercise with those pain killers as the amount I’d need to dull the pain sufficiently leaves me really tired and feeling drunk. And lifting weights and jogging when you’re drunk aint such a good idea.

I had the issue investigated this year with X-rays and a CT scan, one of the Doctors said I may have Sacroillitis, before the X-rays and CT Scan was done, though I couldn’t see how that could be as Sacroillitis is a problem caused by inflammation caused by inflammatory bowel disease, I know I have that but I’ve only had that since 2005 and I’ve had these back issues since 1999! So that was dismissed by me and my GP who thought it unlikely too. The results from the X-ray and CT Scan came back and there’s a problem there, they can’t say exactly what it is, but it’s there and there’s nothing they can do. They advised me not to jog, run, lift weights or do any exercise that puts pressure on my back. This only leaves me swimming, which I can’t afford as a pass at the local gym is £22 a month which I can’t afford, the only other pool near by is £29, so both are out of the question.

Walking is supposed to be good but I can’t walk or stand for more than half an hour anymore without getting a tightening in my lower back, like someone’s stuck a cork-screw in there and is turning it. If try to carry on walking the pain gets worse and spreads down my groin and legs. Despite this I’ve been trying on and off since August 2012 to restart my regime despite what the Doctors and specialists say but I am just incapable of keeping to it anymore, there’s always pain and a lot of the time I’m physically incapable of completing the movements.

Without the exercise to release the endorphins (and I really need those guys) I need to help suppress my appetite and generally feel good… I’m slowly putting it back on. So I’ll be starting another diet tomorrow, only 1500 calories, to try drop my weight because it just isn’t healthy at all for me, and I don’t enjoy feeling unhealthy. The most annoying thing is I want to be physically active, but my body just wont allow it.

Hence why I wasn’t around much last year or most of this year, because I’ve been trying to stay physically and mentally healthy.

Another reason why I haven’t been on much is my University degree. Despite the obvious study, reasearch and writing of notes and essays and the like, there was something else about my course that stopped me from coming on.

It’s not that I can’t do or understand the work, I mean I passed the level 2 Philosophy module in my Politics, Philosophy and Economics degree and 2 others, the issue is that I’m learning so much and it makes me even more unsure of my own opinions. What I mean by this is I read a piece of work then think I’ve got it nailed and seen from all angles, then comes along another way to look at a particular issue from another angle I think to myself, “How could I miss that?”. It’s made me quite unsure of many opinions I hold.

I mean, if I’m wrong about that I could be wrong about many other things. And in fact, so can many other people. This is nothing I didn’t already know but doing this whole course brings it to the forefront because I’m forced to think about these things a lot.

This may sound stupid and cliché, but the more I learn the less I feel I really know.

Anyway, it’s this thinking, alongside my obsessive over thinking I do anyway, that tires me out mentally. Combined with illness and medication side-effects I can barely think straight most days, which makes it extra challenging to do the course and put everything I have into it. This is another reason I couldn’t come on, I was just too mentally tired after being consumed in study, reasearch and writing.

This piece is the blog I should have come back with instead of my Syria one, which is a bit of a throw back to how I used to write, my other blogs should be well thought out and researched, just like the essays I’ve had to write. And you know what, writing them can be a pain in the arse too, especially as only a few people will even read them. Which is another reason why I wasn’t posting much, because if I do one of my long blogs again many normal people don’t bother much. There’s also the fact my blogging at the world also wont change much.

Oh, I didn’t mention my headaches, but they impact my blogging too, but sod them.

My next course starts in October 2013, so expect me to go quiet a little but I will still be around commenting on blogs and such. For now I’ll leave you with Bat for Lashes, simply because it’s the song I’m currently listening to. Oh and how cute is Natasha Khan in the video?

Much love to all!

– Phil

Posted in Health and wellness, Hobbies, Ulcerative Colitis Diary | Tagged: , , , , , , , , , , , , , | 23 Comments »

Ulcerative Colitis Diary: Week Thirteen on Prednisolone (EPIC WINNING)

Posted by DeadAnarchistPhil on April 18, 2011

Green = How well I feel 1 being the best and 10 being the worse.

Blue = Depression Caused by the UC directly. Again, on a scale as above.

Treatment for: Ulcerative Colitis.

Medication, Direction and Course as follows:

Prednisolone : Take four One 5mg Tablet(s) daily for four weeks [Now six weeks], then cut down by one tablet a week each week over the next four [Now three] weeks. Untill I see the specialists in April 2011.

Day 85 Tue 12th April: (?) (?) (?)

Day 86 Wed 13th April:Had a bad visit to the toilet, went three times, first time was normal, second was a little less formed and the third time was typical UC. Hoping this is just a blip.

My sleeping pattern is still upside down. I sleep about two or three hours then wake up around 8 or 9am, then stay awake untill 3 or 4pm and then I’m so tired I have to sleep for four or five hours then I’m awake untill f or 5am. Wonkey aint in it! (3/10) (1/10)

Day 87 Thu 14th April: Things seem to have normalised somewhat, looks like it was just a blip.

Still tired and still fucked! (2/10) (1/10)

Day 88 Fri 15th  April: Been awake since 9am, going to try and stay awake untill 10 pm or so.

Toilet visit normal. Sleeping pattern started to normalise. (1/10) (1/10)

Day 89 Sat 16th  April: Toilet visit was normal.

Sleeping pattern staying stable. (1/10) (1/10)

Day 90 Sun 17th April: Got up at 8:15am.

Toilet visit was normal.

Had a headache. Went to bed at 11:30pm.(1/10) (1/10)

Day 91 Mon 18th April: Woke up at 8:10am. Not been to the toilet yet. Visit to the UC specialist today.

Went to toilet, tis all normal.

Just got back from the seeing the inflammatory Bowl Disease nurse (IBD Nurse), um, I wont be on Prednisolone anymore. I have to ween myself off them over this week and then stop while increasing my Mesalazine Tablets from 6 tabs a day to 8 tabs a day to off-set against the loss of the prednisolone – just incase the UC trys to come back.

She said although things have gone back to normal on the surface of the colon, it doesn’t mean the underside hasn’t. There’s three layers of the colon, and only my top level is healed. So I have to wait for 6 months or so before I start to introduce the foods that could cause the UC. She also told me that I would be able to eat the trigger foods once fully healed, that’s a relief! So yeh, I have about five months left before full recovery because I only started to recover a month or so ago.

If I do have another flare I wont be using Prednisolone anymore, I will be put on another drug that has marginally fewer side-effects and one possible big one! It’s called Azathioprine. If I take this medication I have a 4 in 100,000 chance of developing Lymphoma! But when you think about it, everyone has a 1 in 100,000 chance of developing Lymphoma, so the chances are pretty negligible, but still… Lymphoma??? She told me the long-term effects of Azathioprine were significantly less than those of Prednisolone. Compare them yourself and tell me what you think, what you take them?

Another thing, I sussed out why I get headaches… it’s because I’m so out of shape and over weight. They’re called “exertional Headaches” or “Exercise Induced Headaches“. Basically, it happens when a person works themselves so hard they get headaches. However, just walking, bending down, gardening or getting out of a Taxi (yes, that happened today!) and walking set it off! I got a really bad banging headache when I got back home. Then again, that comes as no surprise to me as I’m 24st!

Oh yeh, because I’m eating rubbish I have a “fatty liver”. I explained to her it’s hard work to exercise when you have trouble with really low-moods and limited diet. Anyway, I have to go for a scan on it soon.

Um, I see the UC consultant tomorrow, so another trip there! Not looking forward to it really!

So, in short… Things are good, coming off the steroids over this week (which means one last UC Diary based on Prednisolone, but I’ll still do a UC Diary once a week or so), weight is bad and liver is a little dodgey, but over all things are sort of looking up on the UC front! (1/10) (1/10)

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Ulcerative Colitis Diary: Week Twelve On Prednisolone

Posted by DeadAnarchistPhil on April 13, 2011

Green = How well I feel 1 being the best and 10 being the worse.

Blue = Depression Caused by the UC directly. Again, on a scale as above.

Treatment for: Ulcerative Colitis.

Medication, Direction and Course as follows:

Prednisolone : Take four One 5mg Tablet(s) daily for four weeks [Now six weeks], then cut down by one tablet a week each week over the next four [Now three] weeks. Untill I see the specialists in April 2011.

Day 78 Tue 5th April 2011: Still have the headache from exercising on Monday, I’ve had it all night, I couldn’t sleep because of it. I slept two hours then had to get up and hold a hot-water bottle to the area. It got rid of it eventually, went to bed at 6am Wed 6th

Never went to the toilet this day. (2/10) (2/10)

Day 79Wed 6th April 2011: Didn’t have a headache when I woke up but developed it when I started cleaning up.

Did some more light exercise today, some squats and walking briskly on the treadmill, it was a little easier, though I need to improve my stamina and cardio over the next few months. If I do it slow I lower the risk of making myself ill and pulling muscles. Still feel like my back’s going to give in though.

Exercise made the headache work!

Never went to the toilet this day.(1/10) (2/10)

Day 80 Thu 7th April 2011: Wonky sleeping pattern the most annoying thing today.

Haven’t been to the toilet today.(1/10) (2/10)

Day 81 Fri 8th April 2011: Went to the toilet today, everything was normal. My sleeping pattern is still well and truly fucked. The closer I get to the course and study time the worse it gets! Which is just what I feared would happen.

I didn’t do exercise, couldn’t muster the, I can’t even think of the word!!(1/10) (1/10)

Day 82 Sat 9th April 2011: Toilet visit was normal.

My sleeping pattern being tits up is not helping me. Sleepin’ odd times does zero for motivation and developing a regime to do exercise, diet, DIY, Gardening and, in the future, study!

My pattern is so fucked up now that I’m sleeping a few hours then waking up and staying awake for six! Which is in contrast to a few days earlier when I was sleeping a lot and feeling tired all the time. Well, I still feel tired a lot, but it’s not as bad. Maybe it’s because I’m up at night with no one else about.(1/10) (1/10)

Day 83 Sun 10th April 2011: Toilet visit was normal. Motivation still low. (1/10) (1/10)

Day 84 Mon 11th April 2011: No toilet visit today. 

Did a lot of garden work, had to force myself to do it while fighting tiredness. I’d been up since 3am in the morning and didn’t get to sleep untill gone 12:30am Tuesday morning. I still didn’t have a good sleep. (1/10) (1/10)

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Ulcerative Colitis Diary: Week Eleven On Prednisolone

Posted by DeadAnarchistPhil on April 5, 2011

Green = How well I feel 1 being the best and 10 being the worse.

Blue = Depression. Again, on a scale as above.

Treatment for: Ulcerative Colitis.

Medication, Direction and Course as follows:

Prednisolone : Take four One 5mg Tablet(s) daily for four weeks [Now six weeks], then cut down by one tablet a week each week over the next four [Now three] weeks. Untill I see the specialists in April 2011.

Day 71 Tue 29th March 2011: (Been normal today, not much to report besides a low-mood still.

Went to the toilet, was normal. I pushed it today! I had another Big Mac for my tea, seeing as no one had gone shopping again and someone was going so I had a Big Mac. We’ll see how it affects me. (2/10) (6/10)

Day 72 Wed 30th March 2011: Went to the toilet twice today, which is something I havent done very often for the last two weeks. Both times it was normal, but I two motions with the second, the second wasn’t that formed and I actually had some abdominal tenderness. Maybe eating that Big Mac was a bad idea! I hope this is just a blip.

Did some light exercise, back strengthening, press-ups, squats, punching with weights in hand, stretching and walked on the treadmill for six minutes. During it and after I felt sick! And that was only light, I also felt abdominal twinges! I hope this doesn’t happen every time! (2/10) (6/10)

Day 73 Thu 31st March 2011: Went to the toilet not long after getting up, 1pm, and it’s less formed but still in the bracket of ‘normal’. Again, hoping this is just a blip and not a result of that Big Mac I ate!

Still feel funny inside, not sure if it was the Big Mac, Exercise or low-mood! We’ll see.

Did some more exercise, but only gentle, to increase my back-strength and over all muscle-strength. Felt sick and dizzy after it. Mood still low. (2/10)(7/10)

Day 74 Fri 1st April 2011: Things have gone back to normal.

Mood still low. (2/10) (7/10)

Day 75 Sat 2nd April 2011: Went to bed at 6am this day, I had a panic attack of sorts, the first time since 2006. Luckily I can control them, I just breathed through my nose normally and tried to relax. It made me feel better but didn’t get rid of the tightness in my chest fully. But it worked to a degree because I fell asleep.

The quality of sleep itself wasn’t that good either, I kept waking up and dreamed it was the end of the world, everyone seemed to be calm about it for some reason! I woke up at 12:30pm and had something to eat while I took my tablets. Then I went back to bed and slept untill 6pm. Still felt shitty when I got up.

Went to the toilet twice! Had the urgency feeling the second time. Still OK though. (2/10) (7/10)

Day 76 Sun 3rd April 2011: Woke up late after staying up to 9am! Woke at 1am and took tabs and then went back to bed. Woke up at 8pm.

Toilet visit was normal and mood still low. (2/10) (7/10)

Day 77 Mon 4th April 2011: Went back to bed at 12am, I was so tired and just fucked off I need to get away from everyone and everything. Didn’t sleep at all, just rested for an hour or so and then got back up again.

Still feel tired and fucked off, more than I have for a while. I find it funny (I don’t actually, I find it annoying), I was planning to do my full exercises again today, and I get this wave of demotivation! A feeling of lethargy, misanthropy and a feeling of  Nihilism coupled with sadness and Nihilism. I’m sick of this mindset, OCD or whatever it is, it’s sending me mental! 

OK, just read that back, that’s enough of that! (2/10) (8/10)

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Ulcerative Colitis Diary: Week Ten On Prednisolone

Posted by DeadAnarchistPhil on March 29, 2011

Green = How well I feel 1 being the best and 10 being the worse.

Blue = Depression. Again, on a scale as above.

Treatment for: Ulcerative Colitis.

Medication, Direction and Course as follows:

Prednisolone : Take four One 5mg Tablet(s) daily for four weeks [Now six weeks], then cut down by one tablet a week each week over the next four [Now three] weeks. Untill I see the specialists in April 2011.

Day 64 Tue 22nd March 2011:  Woke up at 8:50am after going to sleep at 4:00am. Back still sore and I feel shitty, I don’t want to do anything but sleep or stare in to space. It’s moods like this that worry me for when I start studying! I just wont be able to take anything in fully because it.

Went to sleep for a few hours because I felt tired and pissed off. Back getting better though) (2/10) (6/10)

Day 65 Wed 23rd March 2011: Went to the toilet twice, it’s all normal. Back is very much better, will start doing the back strengthening tomorrow. Mood still low-ish, but better than yesterday. (2/10) (5/10)

Day 66 Thu 24th March 2011: Didn’t sleep well last night, I lost count of how many times I woke up. I went to bed early but wound myself up when the OCD/T started. It’s going to be one of those days where I don’t want to be around anyone.

Everything else is normal. (2/10) (7/10)

Day 67 Fri 25th March 2011: Low mood again since I woke up. Spent most the day in my room reading.

UC still at bay and everything is normal. I say normal, it isn’t quite 100%, I still have the tiredness you get with UC and the occasional cramp and pain. (2/10) (7/10)

Day 68 Sat 26th March 2011: UC still at bay, toilet visit fine.

I’ve been doing some exercises for my back and warming up the rest of my body for when I start proper exercise. You know you’re fat and out-of-shape when you have to do warm-up exercises for your warm-up exercises, a week in advance!

Mood still low. (2/10) (8/10)

Day 69 Sun 27th March 2011: Despite the fact I went to bed early, 11:30pm, and woke up at 9am, I still feel tired! I think the tiredness is more the result of low-mood than UC. Still feel low.

Toilet visit was normal! Prednisolone do work for me! Which is a good thing, so good to have normal toilet visits! (2/10) (7/10)

Day 70 Mon 28th March 2011: Woke up late after going to bed late, I’m not 100% sure but I think my tiredness is mostly due to low-mood.

Toilet visit was fine!

Mood still low.

The green readings will remain 2/10 untill I can be sure the UC is not causing the tiredness. (2/10) (6/10)

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Ulcerative Colitis Diary: Week Nine On Prednisolone

Posted by DeadAnarchistPhil on March 22, 2011

Green = How well I feel 1 being the best and 10 being the worse.

Blue = Depression. Again, on a scale as above.

Treatment for: Ulcerative Colitis.

Medication, Direction and Course as follows:

Prednisolone : Take four 5mg Tablets daily for four weeks [Now six weeks], then cut down by one tablet a week each week over the next four [Now three] weeks.

Day 57 Tue 15th March 2011: Woke up at 11am, not been to the toilet yet and no twinges from the beef I ate yesterday. But still, I’m not going to eat any of the foods that may cause a  flare-up untill I’m fully off the Prednisolone.

Went to the toilet, normal! Down to one tab a day from today, wish I remembered that this morning when I took two! Oh well. (2/10) (6/10)

Day 58 Wed 16th March 2011: Got up late (10:30am), didn’t sleep well. Went to the toilet and it’s still normal. No cramps or pains. Did some cleaning and work in the Bathroom, felt OK, besides the fumes from the bleach and the stretching!

Went to bed at 2am, couldn’t sleep or get comfortable. Got up and did some writing then went back to bed at 5am. (2/10) (5/10)

Day 59 Thu 17th March 2011: Got up late, about 12:10pm, I didn’t sleep well again! I don’t think the bleach fumes helped, it’s given me a bad chest! I’ll buy a mask for when I start painting! (2/10) (5/10)

Day 60 Fri 18th March 2011: Didn’t go to the toilet yesterday, so I’ll go some time today. So far, no bloating or cramps.

Went to the toilet, it was normal. It’s so good to feel well again, I mean, I’m not perfect but I feel a lot better. I still feel tired in the day like I used to, but it’s better. Dare I say it… I feel ‘Normal’! (2/10) (4/10)

Day 61 Sat 19th March 2011: Woke up late, about 11:15am, with a bad back! It must’ve been the cleaning and stretching to get the old paint off the ceiling in the toilet on Wed! I still have it now at 5:20pm.

Went to the toilet, it was normal. But I was tired before that, I fell asleep for an hour and half. Though the UC is sort of at bay, I still have the tiredness that comes with it. (2/10) (4/10)

Day 62 Sun 20th March 2011: My back is a little bit better this morning, at least I’m not walking around like an old man!

Went to the toilet, ’twas normal!

I’m feeling a little drop in mood today.

HOLY FUCKING SHIT! I went to bed early, and my back suddenly got extremely worse when I got up again to get comfortable! It was as painful as 2009 when I last had it this bad! Because of this I stayed up really late and my sleeping pattern is well and truly out of the window! Feeling pretty shitty right now. The pain killers (Co-dydramol) don’t even work! (2/10) (5/10)

Day 63 Mon 21st March 2011: Woke up at 12:15pm! I wasn’t up long before I had one of my downturns in mood. When I get them I just don’t want to be seen by, spoken to, looked at  or be near anyone. I also don’t feel like doing anything either. So I went to my room and fell asleep for a few hours, I felt a little better afterwards, though I’m still feeling it.

Went to the toilet, was normal! Just had a shower and preparing for a boring night in front of the TV or messing on about on the PC. (2/10) (6/10)

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