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.


Thursday 24th December 2015

3.45am – today’s side effects, brought to you by Infliximab

Good news – I’m free! Bad news – I feel like shit.

Well, when I first woke up (at 1.15am) I didn’t feel bad; rather, my mind was racing – I felt as though I had slept a lot longer than three hours thanks to that viscerally wired feeling you get as a steroid side-effect.

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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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Wednesday 16th December

6.25am – an experiment in sensory deprivation

We are scarily close to a full week in here. Not what I had imagined at the start. How much of this is based on the slow pace of, well, anything happening in hospital or the slow pace of my treatment, I don’t know. As with most things; it’s probably a bit of both.

Outside of hospital, yesterday was a bit of a nightmare day for T because workmen left a big gaping ‘RAINWATER THIS WAY PLEASE’ hole in our flat roof after they went home last night. Seven panicked messages from T followed along with a woman-on-the-edge-of-a-nervous-breakdown call (which given how much of a cool cucumber she is usually, was quite upsetting). I knew things were getting bad.

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Monday 14th December 2015

4am – saying sayonara to my bellybutton thanks to steroids

Damn clicky IV machine. Still three hours to go until my fluids run out, which will bring me up to normal waking hours. Between a blocked nose, soggy earphones which keep falling out and an uncomfortable elastic band pinching my skin like a joint of roasting ham, I really did my best to sleep at all.

Sleep I desperately need because today, I hope, is a big day for me medically. It’s Monday, so the doctors resume their rounds and will review my progress. I am nervous because although there have been small signs of improvement (read: tiny glimpses of elusive poo), there is still blood when I go.

What they will make of this, I don’t know. Perhaps they will want me to stay on these steroids until I get even puffier and wave sayonara to my bellybutton once and for all. T thinks that it’s joyous news that my outy has become an inny, but it just looks so wrong on me.

As the potassium chloride drip ticks away in the background, I wonder to myself whether there is a link between not being on a drip all day yesterday and whether that had anything to do with the suspiciously small amount of poos I’ve done so far (fewer than six). Does dehydration affect it? I will see if things are any more free and easy now that I’ve been on these fluids throughout the night…

I hate towing the party line

On other non-poo-related matters, I found my mind racing about school in the early hours. Mum keeps telling me to do something nice for them like a Skype call or a video recording (or God forbid, even a handwritten letter). I would love to do this for my class but I know the Soviet level of censorship I’d be subjected to would make it more hassle than it’s worth. Drafts and redrafts of whatever I’d want to say would probably be required, but I’d rather avoid the aggro. And anyway, I could go off my own back and send a secret message but I’d need to keep the senior leadership team (SLT) sweet if I’m going to be reliant on their goodwill while I receive treatment in and out of hospital. God, I hate towing the party line.

One thing that I am going to be cheeky and do is write Christmas cards to the children. I know they don’t all (or many, even) believe in Christianity, but many celebrate at this time of year by gift-giving and spending time with family. I mean, I’m not going to proselytise (especially given I’m not religious… more spiritual) but for me its Christmas time, so I want to share this with them. The big question is how to sign off the cards appropriately…

With love from, 


Best Wishes, 

Happy Holidays,


I want to put ‘Love from Ms. P’ because this is what I’d put to anyone else, and I really do care about my class, but my school is so safeguarding hot that I wonder if this would be frowned upon. My Head even threatened to give my kids a bollocking for writing birthday cards to staff once. GRINCH!

8.40pm – f*cking period

Feeling really fat and swollen today, so subsequently also feeling quite sorry for myself. I have only just noticed my outy belly button start to reappear, which will no doubt be reversed shortly, as I’m due to have my final dose of steroids at about 10pm.

I am starting to really resent the fact they have to give me my final dose so late because I can’t really take my sleeping tablets before then, even though I want so desperately to go to sleep.

To top the whole thing off, I am starting to feel quite pre-menstrual. Nothing beats feeling this crap other than a nice painful period. I just hope to God that they prescribe me the co-codamol I usually take when the reckoning happens.

Experimenting with laxatives before anything more… ‘extreme’

For now though, I am experimenting with laxatives to soften my poo, so it can pass through my rectum without causing so much inflammation. This is Dr. S’s idea (the doc who recently carried out my ‘flexi’ exam and admitted me as a ‘severe acute’ case): he wants to see if this alleviates the bleeding and gives me a better chance of passing poos, rather than just blood. All this, he says, before he tries anything more “extreme”.

If I am honest, I am not that hopeful that this course of action will be effective, but I can see why they’d want to rule out this approach before progressing treatment. I am concerned that I will be discharged once they take me off steroids, even if the bleeding continues. I’ll ask them about this tomorrow…

I really don’t want to be hopping back and forth from mum’s/dad’s/home, although I also really don’t want to be an inpatient at Christmas, so I guess I’m in between a rock and a hard place. At least I’m healthy enough to rest at home, if that’s what’s needed.

T dropped the bombshell that the roofers and Steve the plumber are going to be knocking around from mid-week, which means I won’t have the undisturbed privacy I was looking forward to. On the other hand, I’ll be travelling back to mum’s place before too long, so I can convalesce there.

Tomorrow is the dreaded cannula change day. I really hope that the lovely nurse is on duty: she is the only one who has managed to get a line first time so far and I have no pain where she situated it… fingers crossed!



Sunday 13th December 2015

4.20am – you can’t always get what you want

I slept for five hours straight today. Woohoo! So it’s not the best night’s sleep I’ve ever had, but I’m positive that if my IV alarm hadn’t sounded to tell the world that it was empty, I may have slept right through to the 6am.

Perhaps the extra dose of sleeping tablets did the trick last night. After basically begging the nurse all day to see a doctor about it (she was unhopeful but not unhelpful), I had expected to have to plead with the on-call doctor. But no, instead, the nurse just appeared at bed time with two sleeping pills in the pot without ceremony or explanation. Fine with me.

Give me the damn pills!

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Saturday 12th December 2015

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5.30am – (clock) face-off

Trigger warning: I will be talking about poo, in detail. If you would like to continue to think of me as a Barbie who doesn’t poo, then please, don’t read on!

The clock face and I have seen far too much of each other this evening.

The first time I woke up I managed to resist the temptation of sneaking a peak at it from underneath my eye-mask. It must have only been about midnight then, but already I found myself in a hot sweat; pillow soaking.

Almost unthinkingly, I flipped the pillow over and tried to get back to sleep. Perhaps I subconsciously felt I still had a chance because I’d only recently just dropped a sleeping tablet (which I shall hereby refer to as a ‘sleeping’ tablet, for obvious reasons). Syntax matters in matters such as these.

I’m updating this diary with the bone dry kind of focus you only get from steroids.

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