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!!!

My god. That is precisely why I am here. I begged her to talk to the consultant and find out what my treatment plan is because she straight up told me that she couldn’t make any decisions. She made a half-arsed commitment to find out, but stopped short of promising to feed anything back to me at all. Not a even a scrap.

After this visit I was livid. I felt fed up with not knowing what’s happening. So I cried (again) to the nurses – as they were taking my obs, which went up the spout – and soon enough I was told I’d see not one but two consultants later today.

He’s a big fan of enemas

So, the Scandi consultant who I’ve seen twice on the ward so far) and Dr. S (who did my scope prior to admission, who is also a big fan of glycerin enemas) came to see me to discuss my treatment plan.

But before even so much as a ‘hello’, the Scandi consultant gestured with his palms to his cheeks and made wide eyes at me to indicate his surprise at how puffy I’d got thanks to the steroids. Way to hit a girl when she’s down! I think that’s his idea of banter.

So after a bit of lighthearted back and forth about how much of an obese hamster I looked like, we had an overview of the current situation:

  • I am coming off of IV steroids as of now because they clearly haven’t worked;
  • I am going back on 30mg oral steroids per day (to be tapered off);
  • I am being given 2x glycerin enemas per day to soothe the lining of my bowel (in theory). This is to:
    • A: see if it alleviates the bleeding, and
    • B: make my poos nice and soft for if/when I start Infliximab (biologic treatment)

What I really wanted (and what I got) was an idea of lead-times. I was told that by Monday’s ward rounds they will be able to see if the glycerin and movicol (a laxative) dream-team combo has been effective in reducing the bleeding. If not, then they would be in a position to make a call on the Infliximab on the Monday and potentially send me home that evening. So it sounds like I might only have to endure another three more days/four more nights here.

From what I can tell about my form of ulcerative colitis, they seem to think that the bleeding (which is such a worrying sign for patients) causes a lot of alarm, even when the damage to tissue is not that deep. They described the tissue damage as ‘superficial’ and there are no signs of deep ulceration causing the bleeding. But because of the location of the inflammation – and because things have to pass through there – there is no let up on the lower bowel to help it to recover.

“I’ll just get the surgeon out of the cupboard!”

Following the discussion about laxatives/glycerin/Infliximab, the Scandi doctor found his ‘banter’ bone again and joked about how if the Infliximab doesn’t work then said he “Would get the surgeon out of the cupboard: the enthusiasm he has for just cutting out my colon should be enough to scare the bleeding into stopping!” Hilarious.

So I have a few more nights of shoving lotions and potions up my bum, guzzling down effervescent tablets and popping pills. Taryn brought in her bestie’s favourite doorstop – I mean, book – Roberto Bolaño’s 2666. At 898 pages, I could really challenge myself to read the entire thing during my stay.

Unfortunately, I feel like I can’t leave the planning outstanding for Maths, even though I might not be back in school during the first week of term. I am sure the Deputy Head would be pissed off if she found out that I was working on school stuff and would ask someone else to pick it up, but I feel like I can’t ask for help because everyone is so stacked. One of the other teachers in my year has a mum in hospital (on the same ward as me too) with leukaemia, so I feel that I need to pull my weight to help out even more than usual.

I haven’t heard a peep from my year leader. Don’t know why she hasn’t been in touch; I guess I thought she would have at least texted me to tell me off for doing school work in hospital by now. No one has told me anything. It’s like I’ve dropped off the face of the planet…



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