Saturday 9th January 2016

2pm – Livid. Absolutely livid.

I am surprised that I didn’t come straight home on Thursday and document precisely how angry I was following my clinic visit at the hospital.

The doctor I saw is, apparently (remarkably), the head of gastro at my local hospital. The man was simply awful. He had not read a single page of my file beyond the first page which (incorrectly) stated that I have Crohn’s disease. So when he greeted me with “Alpha, is it? [Small talk with my dad, who was with me, about my name] So you have Crohn’s…”, I was instantly put in attack-mode.

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Wednesday 6th January 2016

8am – F*ck up clinic

Slept marginally better last night but so fed up of waking up constantly, tossing and turning. T was on nights so I didn’t have to worry about waking her up, which I think helped.

Tomorrow morning I will have my first follow-up clinic appointment since I’ve been discharged from hospital. On the letter it says calls it a ‘F-UP clinic’, which may or may not be apt. I had thought that I was guaranteed to receive my next dose of Infliximab but it seems like Dr. S wants to discuss this with me at clinic.

Not sure what his thinking is, as this was all relayed to me by my IBD nurse. I told her on Monday that my symptoms were much better but that I had a delayed hypersensitive reaction on Christmas Day. Perhaps she mentioned the latter point to Dr. S and he’s cautious about giving me another dose unless its absolutely needed.

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Saturday 2nd January 2016

12.10pm – the monkey on my back

Saturday afternoon sitting at home on my own while T works – how strange. Spent the past hour or so researching Infliximab and the Equality Act online, getting geared up for a battle with school.

The Deputy Head (DH) and the Head at school are giving me the silent treatment since I emailed them to say I would not be back at work for the first week of spring term. I’m finding it really hard to not churn the things I’ve said (or plan to say) about my illness over and over in my head. At times I feel guilty, like I’m making excuses for myself but on the other hand I know that rationally, I deserve to take the time off I need to get better. Why do I feel so in thrall to my work?

Last night I researched side-effects of Infliximab and it seems as though during clinical trials there have been occasions where people have had delayed hypersensitivity reactions. In fact, the Crohn’s and Colitis UK website now has a memo about the different types of reactions people experience. These reactions include arthralgia and lupus-like symptoms, so the severe joint pain I experienced sounds a lot like it fits the bill.

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Tuesday 29th December 2015

6am – oh bless, she’s overtired…

Have been up for about an hour now, reading dad’s essay about ‘the sympathetic contract’ between a poem’s reader and its author. Amazed that my brain can focus so sharply at this time of day. I used to be such a bed-bug in the mornings. Old Alpha would be shocked by how I’m squandering all of these school holiday lie-ins.

The really positive news is that I haven’t had blood in my poo for two days straight, so I think the Infliximab might actually be working. I’m glad these drugs are worth the minor side-effects.

Yesterday was a bit of a weird day. I felt exhausted. Perhaps I overdid it – I saw two of my best mates at lunchtime then I went to do last minute Christmas shopping with T. By the time we got back I was pooped, so I had to have a nap, which I never really recovered from.

My emotions were all over the place too. I felt angry, hungry, sad, hysterical (I hate that word but the English language is sadly lacking a better synonym) – the whole gamut of difficult emotions. One minute I was laughing and the next; tears were streaming down my face. I think this is the adult equivalent of as a toddler, wailing to your parents “I’m not tiiiiiired!”, crying, then falling asleep in your dinner. I felt properly crazy. Mum and T ordered me to go to bed, so in the end I dutifully carried myself upstairs.

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Monday 28th December 2015

7.50am – hungover as hell

I had a great day yesterday: no pain or weird side-effects and I think I got about seven hours sleep. Bliss. Today, not so.

T and dad screwed their faces up and begged me to stop talking at the dinner table last night when I remarked hopefully that “This is the last of the pain. I think it was just a blip.” I get it, they don’t want me to get my hopes up but surely being positive is better than wallowing in self-pity?

Perhaps they were right to caution me… I can feel a twinge in my left knee (which seems to be my dodgy one), even through the fug of co-codamol I took at 3.30am for my hangover. Yes, I drank too much fermented white grape juice last night. Dad is such a bad influence.

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Saturday 26th December 2015

6.30am – midnight musings

Woke up at about 1.30am, took another Tramadol because the pain in my joints was returning. Drifted back off to sleep quickly. Woke again at 5am; pain returning – almost couldn’t move again – so took another 50mg of Tramadol. Feeling like a junkie.

I’m getting quite concerned now about my pain management. I want to know if there is anything I can do other than taking painkillers to help alleviate the inflammation. Surely I’m not going to need to take opioids for as long as I receive Infliximab.

Because it’s Christmas I don’t know who I can talk to. My IBD nurse, L, isn’t contactable until Tuesday. My GP surgery is shut today and tomorrow. What an awkward time for this all to happen.

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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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