Hospital haiku. December 4–8.

I trim the stems of
hospital tulips with my
ostomy scissors

Lounging
Medically important lounging photo by Uther ‘Prolific Playwright/Published Poet’ Dean.

 

My plans to blog on the daily were slightly messed around by ill health. After several days in a row of leaving work early due to feeling rather deathly, I finally relented and went into ED on Friday night, thinking that they would give me some fluids and maybe some codeine and send me on my way. But now it’s Monday afternoon and I only just got home a few hours ago.

So to make up for the days lost to a phone-only internet void (and, you know, being hospital-level unwell), here is a selection of random, occasionally drug addled, haiku/short poetry from those lost days.

HOSPITAL HAIKU

I trim the stems of
hospital tulips with my
ostomy scissors

His fingers fly
Writing; counting syllables
Of five, seven, five

The nurse’s glove broke
Latex gave way to warm flesh
Precious skin contact

Mail, Facebook, Twitter
Textual interactions
Words to keep afloat

Tonight at midnight
Lost in an internet blur
I may read Buzzfeed

Arms take turns itching
Fingers one-by-one on fire
Then last are the shins

Pillows that whistle
Every time you try to
Gently rest your head

White blankets and sheets
Lightly patterned white/blue gowns
Pale ghosts at night

I would try to sleep
But I have already and
The steroids say no.

Now waiting, waiting
Free me to the outside world
It’s almost sunny

Orange juice is a
Generous term for this stuff.

une année sans lumière?

I should be happy.

In the sun, on the street, behind and between pages, there are moments, but they come and go and I have no control over it. Every night, getting into bed, clambering back out to take the little white pill that is supposed to make everything okay. But the pill is to the body like I am to this city, and we both rattle around in this space, not quite sure what we’re doing, not quite succeeding at whatever it is we set out to do.

I feel like I exist in class, at work and at home. That’s it. I have never needed constant social interaction, but to have nothing beyond those three spheres is difficult. The time when I am ‘free’ from academic and work commitments is spent recuperating from life, trying to hold onto this fragile thread of adequate health that I’m depending on. Knowing that I can go (and have gone) weeks, months, without physical human contact is overwhelmingly soul destroying. Nobody to talk to about feeling down, nobody who I can break down in front of and not worry about being judged.

The two months (ish) that I had before I moved down here were the most painful I’ve had. November was the worst I have ever felt in my life, and I don’t say that lightly. I thought I had some certainty, at least in being loved, even if I wasn’t sure what I was working towards in any other facet of my life. Now I am alone, and I am working towards a life in an industry with an unknown future.

The worst part is, that half of it is beautiful. Wellington is wonderful, as a city, and some of the people in it are fantastic, but there are few things more difficult than establishing close friendships from the ground up. My classes are great, the projects I will be working on are brilliant, and my job is the bookstore dream. I have met people from all over the book world, and it has been thrilling – but after every class, every event, every shift, I get on the 14 bus, and go home. The internet, a book, a few notebook scribbles, and bed.

I drink too much coffee. I drink coffee, and then my insides twist and wrench and ache. But I’m tired, because I’m sick, so I need the energy. Hell of a vicious cycle. I eat fruit, because I’m sick of eating junk, and then it hurts all the more. I should be eating low-residue, because everything has fallen to pieces, but it takes a lot of self-control to do that, and when there’s a high chance I’ll be in pain anyway, why would I bother? Like right now. I haven’t eaten anything typically uncooperative, but waves of pain still come. So the tramadol comes out, as do the tears of frustration and pain.

I want to be happy. I know that I have ups and downs even when things are ‘good’, but being lonely drags the downs deeper, and keeps them there. I want someone to cuddle me and tell me my hair smells good. I want to have people to hug hello and goodbye. I want to have stories to write that don’t all peter out because the protagonists are either trapped in a room and it depresses me, or their lives are more cheerful than mine and I find myself jealous of my own creations. It’s easier to sit, watch, occasionally read. Trawl through the internet in the hopes of finding some spark of inspiration or light, or just to pass the time until sleep or the final hope of interaction for the night has been extinguished.

I write this because it is all that I can do. Words are all that I have, because I don’t want to rely on my unpredictable emotions anymore, worrying that the wrong/right Nick Cave song will come on at work and be an emotional trigger, because it represents when Things Were Good. I don’t need to have exactly what I had before, I realise that now – most of the time – but I need to have something. I need to be able to love my life, and not just the city and the books inside it.

an adventure in the wonderful world of IBD vlogging!

So, I decided to have a play around with VIDEO. In here, there is much medication related rambling, self-introduction, diagnosis palaver… all of the things that you have quite possibly come to know and love from me and Wamblecropt already. Plus, it’s all in my oh-so-charming kiwi accent, which obviously doesn’t come across in my written posts. So, enjoy, and let me know if you’d like more video type posts!

National Health Blog Post Month Part 1, 2 & 3

I just learned that it’s evidently ‘National Health Blog Post Month‘, according to wegohealth.com, anyway. Now, obviously I am not from the US, nor based there, but I figure that I’ll just treat it like NaNoWriMo – National though the name be, there’s no reason why it can’t stretch out internationally! Since it’s the third of November now, I have a little bit of catching up to do, but I think it’ll still manage to toddle along nicely. So, without further ado, I bring you days 1, 2 & 3 of the ‘challenge’, as it were.

Nov. 1
Favorite Fridays
Tell us what your favorite health apps are and how people can find them.

To be honest, the only health related app that I have ever used is GI Monitor, which was quite useful when I remembered to use it, but that’s a big case of when. I don’t typically have my phone on my person when I’m at work, let alone have it with me when I’m going to the bathroom, so accurately filling in my BMs wasn’t so easy. That being said, now that I’m ostomied up, that’s somewhat irrelevant – though that being said, I probably should be trying to regulate things a little more, but that’s another quest for another day.

I do, however, recommend that anyone with IBD has a few mindless apps on their phone for entertainment while in the bathroom and in possession of one’s phone – Candy Crush Sarga would be great, I imagine, although I personally only got hooked on it while I was in hospital post-surgery. That, or just do a lot of Redditing and Facebooking….

Nov. 2
Little Engine Post
Write 3 lines that start with “I think I can…”
Then write 3 lines that start with “I know I can…”

I think I can succeed in the publishing/writing world, if I continue to put my mind to it.
I think I can get healthier than I ever have been before (including fitness and weight) now that I am determined and making progress.
I think I can be amazing.

I know I can rediscover the healthy, intellectual creature that I was before all of this started tearing my life apart. My academic life hasn’t been destroyed, it has just taken a much needed break.I know I can be happy, regardless of whether or not this ends up being Crohn’s, and how long I end up having my ostomy.
I know I can continue to be a badass example to other IBDers, other people with chronic illnesses, or just other people in general. I may not be exactly where I thought I would be at this point in my life, but despite everything that has driven me down, I still have a degree, a decent job, a partner and a future plan that isn’t so dissimilar from what I thought I would have when I was a bright and shiny high school graduate with all the potential in the world.

Nov. 3
My Mascot!

Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?

Well, the use of the word battle cry reminds me of a nerdy connection the classicist in me has always liked – Ileum vs. Ilium. Now, my IBD/CD/UC/whatever the hell it decides to be may be colon-specific at this point in time, but a lot of IBDers have their disease in the ileum (the last section of the small intestine. Ilium (with two I’s) is one of the Latin names for the city of Troy. And since we’re constantly doing battle with our insides, much like the constant conflict between the Greeks and the Trojans over the decade or so of war over Helen… I do rather like the idea of being associated with an ancient figure of some description. Since Pallas Athene was the key patron goddess of Troy, let’s go with her. She’s badass, she is, among other things, the goddess of war, wisdom and strength, she frequently has an owl companion… let’s roll with this.

how to handle stomal surprises like a pro

Or, more accurately, how not to handle stomal surprises. Like a pro, or like any kind of sane person.

Forewarning that this post is a little more stoma/ostomy centric than others, and if you don’t have the experience of an ostomy – or at least IBD yourself, it may be a little much for you to handle.

Continue reading how to handle stomal surprises like a pro

staring down the barrel of re-diagnosis

I had my follow-up appointment with my surgeon yesterday.

It wasn’t great.

I was going into the appointment thinking everything’s going fine, I’m back at work, I’m healing up, the stoma’s looking mostly fine except for the hypergranulation around the outside. I’ll have ‘replumbing’ surgery ASAP, we’ll say a fond farewell to Buffy the Stoma and the rest of my colon and welcome the new, yet to be named j-pouch.

The best laid plans…

See, I had a Hartmann’s procedure (basically a colonic resection/partial colectomy) because my surgeon wanted to be sure that it wasn’t Crohn’s before yanking the whole thing out – and my inflammed section was limited to the sigmoid colon and rectum, basically, but it was just perpetually super bad in that area. I had an MRI a couple of weeks before the surgery, though, and was told that my small bowel was completely clear, and was therefore under the impression that yes, it was ‘just’ UC, but the plan to stick with the Hartmann’s for now remained.

Thing is, when they take out part of your intestines, they can look at it a whole lot more thoroughly than they can when it’s just a colonoscopy biopsy. And it turns out that the degree/depth on inflammation found ‘favours’ Crohn’s. The surgeon is getting a second histological opinion before anything too intensive is done, but basically, she doesn’t want to try reconnection until at least the new year, which would theoretically put paid to starting any new academic plans, since the postgrad diploma I want to do starts in February, and I need to allow fairly substantial recovery time.

So it looks as though I’ll be postponing any kind of surgery until the end of next year. Which means that me and Buffy are going to be hanging out together for a hell of a lot longer than planned. I am relieved, however, that they did go for the partial surgery, because my surgeon is pretty much now of the opinion that my inflammation goes so low that a j-pouch probably wouldn’t take – and preemptive total colectomy could have therefore meant permanent ostomy. The way it is currently, I would just get what remains of my colon reattached, and hopefully the still inflammed rectum would have settled down enough by then – with the help of maintenance drugs, something else I’d not really banked on. I’m currently completely off meds, apart from painkillers on occasion, but if the decision is made that it’s Crohn’s, I’ll be back onto azathioprine at least, if not getting back on inflixi or Humira. Hopefully something can manage maintenance, since I’m symptom-free at the moment… but I don’t exactly have the best track record for meds working.

So it’s really super fun in health-world for Briar right now – I hope that you’re all in a better place than me!