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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Friday 18th December 2015

5.45am – dem dry bones

With all of these hospital treatments and effervescent tablets churning up my insides like a cement mixer, it’s really hard to get a decent night’s sleep. I woke at midnight, 2am, 4am and then dozed until now.

Alongside the frequent trips to the bathroom, I have been getting joint ache in my knees and ankles; alongside some less-than-welcome period pain. I am somewhat relieved that the the rheumatologist who examined me yesterday said she wasn’t worried about bone inflammation. She even referred me for physio to keep things mobile while I try to get into remission.

T and Jules thought it was hilarious when they saw me hobbling around like a grandma today. They even gave my mobilisation exercises a soundtrack of slow jamz music. I think that the funniest thing is how chub-chub I’ve got thanks to the steroids.

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Thursday 17th December 2015 (I think)

8.40pm – losing my metaphorical sh*t

There I was thinking that people who have panic attacks are utter losers, when I found myself getting so wound up and upset this morning that I could feel my heart pounding out of my chest. And it hurt.

In between my best attempt at yogic breathing and chanting ‘hakuna matata’ in my head like Pumbaa on speed (to keep myself from boiling over), I spent much of the morning sobbing. To myself; over the phone; to the healthcare assistants; to the nurses.

The icing on the cake was when the doc who introduced herself as the ‘SHO’ (I googled this and it’s means she’s a junior doctor currently in training, at which stage I don’t know) and asked me if there was BLOOD IN MY POO!!!

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