UC Diary/Vent/General Shiz

Well it’s been well over 12 weeks and the Adalimumab has done diddly-squat. In fact things have become much worse.

I was averaging 8 toilet visits a day with blood, mucus, tiredness, urgency, cramps sweating etc. It then went up to 10 on average but being as as high as 15 times a day. Because of this I had to go back on to Prednisolone to reduce the inflammation and enable me to go to the hospital for a blood test to see if there’s scope to increase my dose of Adalimumab. I couldn’t make the first 3 appointments because the UC was so bad, but made the 4th, that was over 2 weeks ago and I’m still waiting for the results. In the meantime I’m coming down off the Predisolone, although it has helped a bit, now that I’m coming off it symptoms are getting worse again.

Not only that, the combination of bad UC (it being active and having to cut down meal sizes) most this year and the Prednisolone, has made me lose weight. I was 22st in April, I’m not just over 19st, I lost nearly a stone in the last week or so (I can stand to lose some weight anyway). The Pred has made my steroid-induced diabetes (yes, Pred gave me it last time) go out of control, regardless of what and how little I eat. My eyesight is blurred again, I’m thirsty and weeing a lot. Add to that the constant feeling of tiredness, complete lack of concentration and the crushing boredom of sitting still and you’ve got yourself a great time!

I even tried to do some windows paint colouring of pictures I drew a while ago, just to pass the time, and I just can’t concentrate at all, nor do I have the patience anymore. Just sitting at the desk made my insides sore and made me feel sick. I can’t read for long either, whenever I do I get a pressure behind my eyes. It’s even been difficult to listen to music for some reason. It’s like life is insistent on sucking the fucking fun out of everything! Even typing this is fucking difficult. I think the headache stuff may be the high blood sugars. I would just come off the steroids but you can’t ‘just come off ‘ them because you get withdrawal symptoms.

So yeh, I’m waiting for blood results, if the test comes back saying there’s scope to increase my current dose I’ll stay on the Adalimumab. If not, it’s on to something else. Seeing ass my Azathioprine, Salofalk, Adalimumabe and a course of steroids are barely making a difference, I don’t think an upped dose will do much. In fact I think my body has got used to the Aza and Salofalk now anyway, I’ll probably end up coming off them.

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In other news, the SNP are still sticking to their mission of “FREEEEDOOOOOOOM” from the evil English Empire, sorry, I mean Westminster. There is no solid economic, political or cultural case for Scottish independence. In fact independence would likely damage the economy and it would not recover for possibly a decade (of course the English would be blamed for this).

That’s not to say Scotland wouldn’t recover and make a go of it eventually, it’s going to be painful getting there, but they could succeed in the end. Though that’s what the SNP consistently avoid talking about. Same with the currency issue, they can use the pound if they wish, but they will not be in control of it. For instance, Panama has the U.S. dollar as its currency, but has zero control over momentary policy. You can bet if Scotland does go independent the SNP will use the control the Bank of England has as scapegoat/deflection for why the Scottish economy is failing.

They couldn’t join the EU straight away either, they would have to deal with their share of the UK debt before joining the EU, which would come at the expense of deep cuts to Scotland’s public services. This is something else the SNP choose to not talk about, although they say it’s not their debt as it was borrowed by Westminster on their behalf and if they had control they would not be in so much debt. The fact is the Holyrood was given control over tax, spending and welfare back in 2015, and since then they’ve either refused to implement policy or handed the powers back (like with Welfare). This from an administration who said they could get a separate country up-and-running in 18 months. They’re just as shambolic and useless as the shower of bastards in Westminster.

However, if the UK can vote to leave the EU and take an economic hit that will hurt, then so Scotland can leave the UK and take an economic hit, as long as they know how hard it will be. It will be a lot harder for Scotland to leave the UK, though. Leaving the EU with your own currency and central bank etc puts you in a better position to recover from the hit of political and financial decoupling from a block such as the EU. Scotland is lacking in these departments.

I also still don’t see the point of going from one union (UK) to another (EU) where things are only going to become more centralised and their voices drown out.

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I support Black Lives Matter, but this is just disgusting! Not all BLM supporters are like this, but intimidating people to put their hands up and join you? Enforced solidarity? This is intimidation and borderline facisim, some of the things they’re protesting against. Though I’m not surprised, the left over the last 20 years has been bullying, deplatforming and shouting people down so much that they’re toxic as fuck and have become what they fought against. Not only has it damaged the BLM movement, that video will create more Trump supporters than anything else that Tangerine halfwit could ever come up. Well done! A spectacular own goal.

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Morons who refuse to wear masks! You’re selfishness and stupidity is staggering! It makes me angry and sad. Just because you think you’re not at risk, doesn’t mean you can put others at risk. I was driven home by a taxi driver from the hospital who said “It’s a matter of choice”. What? It’s a matter of life or death for me, and I’m talking about his mask he should be wearing, not mine! This after I told him I was on 3 hefty doses of immunosurpressent drugs. Fucking idiot! Next time I’m asking for a driver with a mask. Certain masks aren’t 100% effective but it limits the chances of spreading it. If there’s a large 2nd wave of Covid-19 this Winter then there’s going to be a lot of mentions at the Darwin Awards, because even young, healthy people get the virus and die. An even if it doesn’t kill them it’s going to damage their bodies long after it’s gone.

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Anyway that’s enough. I just had to vent and do something that wasn’t sitting still being bored, even though it’s taken me ages and pissed me off. I think I may have to avoid politics again in the future because it’s made me feel worse. I’m sorry for not replying to comments and visiting blogs, I’ll get around to everyone eventually, writing this has taken it out of me. Take care all and hopefully back sooner rather than later.

UC Diary: Update and Adalimumab

WARNING:

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!