so i broke my ankle…

I broke my ankle.

In three places.

And dislocated it.

And tonight is my tenth night in a row in Auckland Hospital.

I arrived in an ambulance on a Wednesday.

I was meant to be flying to Honiara on the first Friday.

I’d be back by now if I’d gone.

Continue reading so i broke my ankle…

The first time

I was going through my old Tumblr to find my go-to chocolate cake recipe, and stumbled upon this… my first ever IBD-related blog post, I suspect. 25 May 2011. I thought I’d post it here for posterity.

Those were the days… incredible pain on the daily, uncontrollable urgency, no painkillers, incapable of properly attending lectures. But also, relatively simple meds with less impact on my total system. No surgery, no steroids, no biologics. Not even my full-blown diagnosis yet. Anyway, without further ado, here’s 20-year-old Briar’s words about IBD:

Continue reading The first time

curled-up flesh

Pain. Drowning  crinkle-cut curled-up flesh in whitest milk. Obligation lifts the cup, pours it in. No foil-wrapped magic tricks want to have anything to do with it; the capsule sinks below the surface before it can ignite. Flickers as a match might, but with the untiring power of the glowing ember.

No end in sight. The worst days were better, because hope was still cradled that the broken parts could be cut away and mended, dead branches and grafts. But the poison is in the tree and eventually there will be nothing left but dried parts broken on the forest floor.

All the words that a dragged-down mind can label itself with, be labelled with. Anxious. Depressed. Pathetic. Lonely, lonely, so lonely. When I stood alone in drifts of snow in another place, at least mind and body were whole, or still clinging together in the hopes of human unity. The future was allowed to be clouded.

Now I must clutch myself, squeeze my own arm, dig nails into my palms. The crescent shapes do not leave scars, not yet. Record videos intended for a public audience, a forum of confession and reality. Then delete them, because tears are not becoming, not in real life and not in a little box on your screen that you can escape from when you feel uncomfortable.

No one to do the holding, the whispering. Nobody to tell me that I’m being crazy, that I’m more than a foolhardy experiment gone wrong, that my best days aren’t necessarily in my past, that it’s okay, it’s all okay. That I can be loved again, that I’m not ruined by or defined by my body, by my awful, uncooperative, sliced and reconfigured body. Nobody. No one to rely on, to call in an hour of need, no family to go and hide with when it’s too hard to be alone.

Silent nights in a house of extremes – the joyful noise of the happiness of others, going on all around, or the silence that hangs more and more, as the nights close in and nobody else is home. A kitchen untouched – what kind of energy do you think I have? Expend what precious little there is on cooking, when I’ll either be in tears from the blandness, or in tears from the pain?

The pain, the body of pain. The mind draped in it.

 

world IBD day

It is May 19th – at least in New Zealand, it is.

On this day, the following things have happened throughout history

Anne Boleyn was beheaded (1536)
Nellie Melba, the soprano and namesake of a delicious dessert, was born (1861)
Oscar Wilde was released from prison (1897)
Pol Pot, leader of the Khmer Rouge and totalitarian dictator of Cambodia, was born (1925)
André René Roussimoff, AKA André the Giant, was born (1946)
Marilyn Monroe sang ‘Happy Birthday’ to JFK (1962)
Tu’i Malila , the world’s oldest known tortoise died at 188 years old (1965)
Jodi Picoult, Queen of Depressive Chick Lit, was born (1966)

Nowadays, it is apparently Malcolm X Day in the US, St Calocerus Day in the Eastern Orthodox Church, and Greek Genocide Remembrance Day.

So a lot goes on on this day. But there’s another importance to this particular date that is of significance to me, and to many other people, even if they don’t necessarily talk about it as loudly as I do.

It’s World IBD Day, one particular day given to talking about Inflammatory Bowel Disease. Some of you will have read my pieces on IBD in the past, some of you may not have. So we’ll go with a basic level of explanation.

The first thing to remember is that IBD is completely separate from IBS. IBS, or irritable bowel syndrome, is fairly common, and whilst unpleasant, it is rarely a serious disease. Don’t get me wrong, I wouldn’t wish uncooperative insides on anyone, but the reality is, it pales in comparison to IBD, so it seems reasonable that many of us with IBD get a little frustrated when people confuse the two. IBD is, by most accounts, autoimmune, putting it in the same family as lupus and rheumatoid arthritis. We just happen to have immune systems that really, really hate our guts (ha!).

It is understandable that some people are quiet about their Crohn’s, or their ulcerative colitis (the two major forms of IBD). We have been conditioned to not talk about things to do with digestion – tell us about your migraine, sure, or your asthma, but we don’t want to hear about the fact that you have spent your day doubled over in the bathroom. So people keep silent. They avoid bringing up the subject of their pain and suffering, even with their doctors. I am one such culprit. I started presenting symptoms about a year and a half before they got to the point that I knew I really couldn’t go on with the way it was. I was a twenty year old girl, I wasn’t prepared to talk about ‘gross’ things with anyone. If I had spoken up sooner, it’s possible that things could have gotten under control more thoroughly, without having to go down the rocky path that I ended up having to take – that I am still very much on.

Here is a sample idea of what twenty-four hours in the life of a really bloody stubborn gal with majorly flaring IBD is like. I’ll start from going to bed, because that’s probably the best way to illustrate it.

10pm – Last minute bathroom visit before bed. Worst of the day is hopefully over, some pain, probably still some blood, maybe twenty minutes spent dealing with it. Take evening medications (4x Asacol, 1x prednisone, 1.5x azathioprine, 2x paracetamol because the doctors haven’t prescribed you anything stronger yet, 1x citalopram because the prednisone has caused fully fledged depression to finally take hold). Go to bed.
11pm – Still can’t get to sleep, too wracked with pain, clutching stomach, possibly sobbing quietly into pillow.
2:30am – Woken up by insides. Pain. Go to bathroom. Pain. Back to bed.
5am – Woken up by insides. Pain. Go to bathroom. Pain. Back to bed.
6:25am – Woken up before alarm by insides. Go to bathroom. Start getting ready for the day – this involves making sure that an ’emergency’ kit of sorts is in the bag.
6:55am – Second ‘official’ bathroom visit of the morning.
7:10am – Leave house, get to the porch before doubling back to go to the bathroom again. Keep in mind that on all of these bathroom instances, there is pain, and blood of varying amounts.

Does that give you an idea of how things are? I can’t go into the intricacies of the whole day, really – but I would always have at least one possible stop off on the way to work, I would always allow a lot of extra time to get there, just in case I had a really bad attack. I would generally go to the bathroom two to three times an hour in the first half of the day, lessening as the day went along. That was the reality.

And it’s the reality for a lot of other people too. We all have different precise symptoms, but pain is universal.

I was only diagnosed at the end of 2010, but even though it’s only been three and half years, I still couldn’t possibly tell you how many times I’ve had needles put in me. I’d hazard a guess at fifty blood tests, maybe fifteen IVs (and that’s not including all the times that I’ve been stuck more than once because my veins are so worn out). I have had IV infusions that almost much amount to chemotherapy (hardcore drugs given intravenously), I’ve been on drug trials (multiple injections in my stomach, every week, about seven vials of blood taken every week), I’ve been on steroids, I’ve been on the sort of drugs they give to organ transplant patients.

As canny readers will realise, none of this has properly worked. I had fifteen centimetres of my colon taken out last year (I have the laparoscopic scars to prove it – I’ll show you if you ask – my belly button looked super brutal for the first few weeks after the op). I have an ostomy, for now (cf. my happy clappy articles for various publications on the topic). These meds and surgery probably saved my life. People can – and do – die from complications of IBD. The internet IBD community has recently been mourning the death of twenty year old Alexandria Davidson, a Crohn’s advocate who spent the last months of her life in hospice care. I had only vaguely heard of her and her organisation before I heard about her passing, but it still upset me. IBD is not something to be trifled with – and to suggest that it’s a stomach ache that’ll go away if we eat raw vegan/paleo/gluten-free/insert fad here is deeply insulting both to those of us suffering from it, but also to those who have died as a consequence, and to their families.

I am still not well. I take painkillers most days, I take anti-nausea meds more often than I’d like. I get joint pain – my knees are below par, and sometimes my elbows,  fingers, and toes play up too. Now that I’m ‘healthier’ than I was, I would like to be able to get more active, but instead my body seems to be letting me down when I push myself. I still get intestinal pain – and after my specialists agreed, post-surgery, that it was most likely Crohn’s, not ulcerative colitis as previously though, I am living in constant fear of inflammation and pain spreading to other parts of my gastric tract, instead of limited themselves to my large intestine like well behaved UC symptoms should. I am going to need to have at least one more operation at some point in the future – and even that is scary. You never know exactly what will happen, what will have been done when you eventually wake up. You have to deal with a whole new kind of pain during recovery.

There is a lot to handle. Especially when you’re in a new city, still waiting to be seen by their gastroenterology unit, when you don’t have people around who understand what you’ve been through, when you no longer have someone to sit with you when you choke down colonoscopy prep, to rub your back when you’re in bed crying from the pain.

So, today, spare a thought for me, for your cousin who has Crohn’s, for your coworker who has taken time of for mysterious stomach pains. Think about the reality of what we live with, a life of pokes, prods and pain, a life of boxes of medical supplies at your door just to be able to function in society. It’s a mixed feeling when you get excited about the arrival of a new style of bag. If nothing else, just remember – it’s a hell of a lot more than a tummy ache.

held

i meant to find some comfort in the keyboard, finding myself awake later than i should
borderline hyperventilation, reliving moments best left to the past, ill-chosen reminders
for every word of reassurance, this too shall pass, you are so strong
once in a while the breakdown, the relinquishing of control to that baser part
known for its lingering, its fears, its dread – it descends and the wind outside will not dislodge it
the rise and fall, lost in the trough where bad dreams feed and breed
the but, the every but that comes to mind
so easily shot down, words are wind, since this is some strange fantasy after all
alms given in casual words
he told me i lacked empathy, smug and meditative
i told him empathy is why i’m still here

sometimes my illness makes me feel strong
sometimes i tell myself that it is what has led me to this place
that it is no bad thing to have your path drawn in strange ways
better sense tells me that it was not health that drove me this way
in goals and in dreams
but it is what i owe my unhappiness to
directly, indirectly, every day, looking at scars
a constant thrum of malcontent
no end in sight, just a lifetime of people telling me
how strong, how brave, how inspirational
and waiting for the next drug or op
i do not want sympathy
i just want to be better
i want to have energy so that i may be able to live
i want to not live in fear, or less of it at least
i want to not have to use this page
as a diary or a one-sided counsel
i just want to be better.

health insurance [backdated sept 12th]

i imagine gold
dripping through my fingers
pooling at my feet
to be taken from me
reverse transmuted
into some kind of
colourful pill
to be swallowed
to see what happens

This was triggered by reading yet another post somewhere about the costs involved with drugs and treatment and plain old appointments for people with IBD (and other conditions, obviously, but whaddaya thing I’m going to be reading about?) in countries other than my own.

It sickens me, seriously. And it makes me feel extremely lucky that I live in New Zealand, where my surgery costs me nothing*, my ostomy supplies cost me nothing, my infliximab infusions cost me nothing. The only thing I’ve ever had to pay for are regular prescriptions, and those are $5 a pop, generally for a three month supply. And if I go over 20 scripts in a year, the rest will be free.

Anyway. That’s just me ranting, and wishing that my friends in the US didn’t get such a raw deal when it comes to what is basically the most essential part of continued existence – their health.

*nothing out of pocket, obviously I understand that this is paid for through taxes, and thank all and any various deities for that.

breaking point

WordPress, thou art my confession box, as it were, or one of many, for the internet’s good like that. But this is the place where I talk most frankly about mental health, and I’ve certainly come to the complete realisation today that there is no way that I can be on prednisone/in this current mental state without some kind of corresponding medication for my head. Three days back on my highest dose of prednisone, three days of on-and-off mental trauma. It really can’t be coincidence.

Spending half an hour lying on the bathroom floor, alternating between foetal position and sobbing and spread eagled, staring at the ceiling… that’s not the way evenings are supposed to go. I shouldn’t be telling myself ‘I don’t want to die’ over and over until I’m hysterical. I’m certainly not suicidal, it’s quite the opposite. I’m terrified of dying before I’ve proven myself. I’m terrified of something going wrong with my disease or my head or my medication and not being able to be all that I hypothetically know I can be, at least not when I’m in the throes of mental anguish.

I think I’m reacting far too much to this medication/situation for it just to be a psychosomatic thing. But regardless of what’s caused it, I need to get it to stop. As long as I can hold out the next couple of days, until I see my GP, it might all be okay.

And this was just one of those things that I needed to get out of my system. Much like so many things, but at least typing out feelings is actually able to be done. Getting rid of poisonous synapses and intestines… that’s what we’re working on.

on DRUGS (with PICTURES!)

It’s official – I have a love/hate relationship with prednisone.

Photo on 2013-01-27 at 15.15

I’ve been on it for nearly two months now, and it’s the only thing that’s had any kind of effect on my UC symptoms. But, as previously mentioned, I’ve been tapering it… and my insides have been starting to play up a bit again. So after a chat with Jacqui, the lovely IBD nurse at Middlemore – and after she consulted with the head of gastro, who’s one of the doctors on my case, as it were, I’m back up to my initial dose – that’s 20mg a day, which is actually a fairly small dose, still, but twice as much as I’ve been on for the past week.

And now that I’m on day two of taking it again, I’ve already had a freakout session. I had a few good ones soon after starting the pred, but after the first taper and then the second, I was feeling a little saner. But now – bam. It’s like I have to choose between intestinal and mental health – I can’t have both. I’m still at the stage where they can’t be sure whether or not my body and the infliximab are cooperating to make it work, so steroids are all that there is for now. In some ways, steroids are better than infliximab. Cheaper, for one thing. Pills, rather than infusions, which is a definite bonus.

But my mind is not okay with prednisone. Nor is my body, in other ways – I’m trying desperately to get healthier and fitter, and taking medication that can cause weight gain and puffy face and all that jazz is just making the mental breakdown all the worse. There’s no winning. Either I’m sick, and can’t do anything to make myself healthier in any way – or I’m ‘healthy’, colon-speaking, and I turn into an angry pufferfish.

It’s becoming very easy to just feel sorry for myself and melt into a sobbing mess. Lord knows it has happened before. I can yank myself out of the deepest pits of despair sometimes – doing the dishes while singing along to Avril Lavigne’s first album sort of helped, even if I did mostly just get angry at the kitchen. Frittering away time on Facebook and Reddit, even if it feels empty and pointless, it’s still better than lying facedown on the carpet, right?

But hey. Maybe it’s time to introduce you to ALL my drug friends. There’s more to life than prednisone, after all – even if none of it seems to do much, into my body it goes!

Therefore, let me present

BRIAR’S DAILY DRUG COCKTAIL.

look at how much fun we have together!

The day starts with the aforementioned prednisone. Four little white tablets, knocked back at once, because I’m cool like that. Along with my first four Asacol of the day. Asacol is mesalazine – which, according to Wikipedia is ‘a bowel-specific drug that acts locally in the gut and has its predominant actions there, thereby having few systemic side effects.’

more like asaCOOL, amirite?

So there you go. I’ve been on Asacol for about two years now, ever since I said to the doctor that the relationship between myself and the Pentasa enemas he prescribed was not going anywhere anytime fast. Nor were my symptoms. They didn’t really go anywhere with the Asacol either, but, as I’ve said before, and I’ll say again (likewise my doctors), if I wasn’t taking it, who knows how much worse I might be? The prednisone needs to be with food, and the Asacol is twice a day, so they get scarfed down with whatever I can stomach for breakfast.

Then, some mornings – though mercifully not all mornings at the moment, I pop my bff, TRAMADOL. Some mornings I’ll attempt paracetamol first… I do have a box as tall as my head of the stuff, after all…

SO MANY DRUGS

…but realistically, the kind of pain that paracetamol can handle is just my daily business, so if I feel like I need pain relief, it just doesn’t cut it. So that’s where my tramz come in to play!

tramadolololololololol...

Seriously. Until prednisone started doing stuff, getting the tramadol prescription was the only thing that ever seriously helped me out pain-wise. It’s courtesy of these bad boys here that I’ve managed to get through the past 5-6 months without any pre-arranged sick days at work. AMAZEBALLS.

Then, the day progresses. If I remember, I’ll take a multivitamin and a Executive Stress B vitamin with my lunch, especially since I’m still working on managing to tolerate most fruits and vegetables. Then work finally finishes, we all cheer, and I come home and collapse for the evening. But before rolling into the sweet embrace of sleep, there’s….

please sir, may i have some more?

MORE ASACOL! FOUR MORE! FOUR FOR YOU GLEN COCO, YOU GO GLEN COCO.

And a tablet and a half of azathioprine, also known as Imuran or Imuprine. I pre-cut them and keep a bunch in a gladware container. Cunning! Azathioprine, again, quoting everyone’s favourite research site, Wikipedia, is ‘an immunosuppressive drug used in organ transplantation and autoimmune diseases and belongs to the chemical class of purine analogues. Synthesized originally as a cancer drug and a pro-drug for mercaptopurine in 1957, it has been widely used as a immunosuppressant for more than 50 years.’ GOODNESS ME. The more you know.

om nom nom

And that’s the lot. So, at the moment, a relatively pain-free day will consist of thirteen and a half tummy-related tablets, plus painkillers if necessary. Gosh.

Tune in next week, for our latest installment of Tales of Ward 32 – Infliximab Infusion Live-Blogging! What a thrilling time to be alive.

upcoming pieces

So, I’m not sure how many people reading this on a regular basis have investigated this blog because of its IBD/health connections, but as you may or may not be aware, in addition to my on-going 365 pieces project, I am trying to work on getting together a greater number of pieces on gastrointestinal (and mental, which I have delved into recently, too) health. But on the off chance that any of you have a vested interest in any subsections of said health issues, I thought I’d put it to you, my hypothetical readers, to have a say. Current areas I’ll probably look into in the near future are…

  • experiences on the ward
  • NZ healthcare and why it’s awesome
  • the wonders of prednisone
  • the wonders of tramadol
  • the wonders of fentanyl/whatever other drugs they give me before ‘scoping
  • the difference medication makes
  • a thorough investigation into/explanation of the differences between IBD and IBS
  • IBD and ‘first world problems’ (this will require more elaboration at some stage, I guess)
  • gluten? dairy?  & other irksome questions from well-meaning people
  • why I should get a j-pouch/why I should get an ostomy/why I should avoid surgery at whatever cost
  • more mental health/confessions of a depressive IBDer
  • what the hell can you eat, then Briar?

That’s the list I scribbled a couple of days ago, anyway. So there are a fair few different areas to jump on into – but if anyone thinks any sound particularly juicy, then do let me know, because writing for the Internet generally involves appealing the masses, to some extent!