Friday 25th December 2015

10.45pm – I swear, my knees were giving birth

Had the night from hell last night. Woke at 2.30am, after having finally got to sleep at 1.30am once T had got back from her late shift in central, thinking surely it must be at least 5am because I feel super awake.

Then I noticed a dull ache in my knees which gradually worsened. I took two Solpadeine Max at about 3am but these didn’t hit the sides, so that by the time it got to 4.30am I was in excruciating pain.

The only way I could describe it is like my knees were giving birth. The pain was inside them, stabbing, searing away at the joints. No matter what I did, I couldn’t get relief. I tried to deal with it by myself, but eventually I had to ask T to get up with me – I couldn’t even sit and google my symptoms – I just rocked back and forth like a junkie.

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Tuesday 22nd December 2015

10.20 am – lost my sample, but not my shit

I have just seen the Scandi doctor, who doesn’t seem very hopeful that the Infliximab will work, but the good news is that I think I’ll be getting it today!

Ready against the odds really, because apparently my tuberculosis (TB) sample was sent to the lab too late (a.k.a buried under a pile of samples) and was no longer valid *insert string of expletives*. When I heard this from the IBD nurse, my jaw nearly dropped open, especially when she said the bloodwork would take a day or two to re-test.

Without a negative TB result, I don’t think they are supposed to give the drug, so days started to roll over in my head; ever closer to Christmas.

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Monday 21st December 2015

8.10am – Enema of the State

Not the worst night’s sleep so far – think I only had to get up once or twice. However, bum is not in a good way today: quite painful when passing poo and still blood. Could all the enemas be making it worse? They certainly burn when I use them, and the glycerin is really hard to keep in. Just makes me want to poo, and what follows always hurts. Not looking forward to using all this crap at home.

1.45pm – an escalation

Saw the Scandi doctor at midday. He looked disappointed when I told him that I didn’t feel any better. In fact, he slapped his ID card onto his forehead when I told him I felt more ill for having been in hospital. I guess that’s not a glowing appraisal, but this has never really been about clinician skill; rather, it’s been a case of ‘suck it and see’ with all these various treatments.

Sounds like some sort of pesticide…

The long and the short of it is that I will be sampling the deliciously expensive Infliximab (Remicade). It sounds like a pesticide (some of the listed side-effects aren’t far off) and it works by inhibiting something called the Tumor Necrosis Factor (TNF) which is associated with inflammation in the body.

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