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…

marking time / health misadventures

It’s two years and a day since I had surgery. Unexpected, life-saving, emergency surgery. I was in incredible pain before it, and different kinds of incredible pain after it.

Before the operation, I was doubled over. Stabbing sensations, rolling walls of abdominal agony that would come and crest and fall just because I moved a fraction of an inch too far. I didn’t know what was wrong. I mean, on a grand scale, I did, because when you’ve got Crohn’s, it’s a fair bet that what’s ailing you somewhere in the digestive tract is Crohn’s related. But it was a different kind of pain to the pain I’d tolerated at varying levels over the years, that I’d cried out from, that I’d tamped down with multi-pill doses of tramadol days on end just to make it to work.

In hindsight, with that kind of painkiller regime, maybe I shouldn’t have been working at all.

But that time was so long ago, I’d been doing so well… and now this? Mystery abdo pain, lower left quadrant, fever? Not what I’d been led to believe was my excruciating ‘normal’.

And after… after was new, too. After my first operation, I’d felt grotty, but better. Planned surgery, even when it’s desperately needed, is a lot more gentle on the body. The surgeons know what to expect. They have time to plot things out, to talk you through everything. This time, I’d had a CT scan one day, and by the end of the next day, I’d had a multi-hour open abdominal surgery (no adorable little laparoscopic lines this time) to remove 15cm of large intestine and to remove a stoma (well, turn it into a surgical drain, first) and to reconnect my pipes, so to speak.

I’d been grotesquely unwell – but chronic illness warps your perception of pain. When your ‘normal’ state has arisen slowly, your illness beating your body down further and further, bit by bit, you adjust. It sucks, and every moment can be painful or difficult, but you adjust. The fact that I acknowledged that this pain was different, mysterious, possibly dangerous was a big change in my relationship with my pain. Every other time in the past when I cried out in the night, when I wept in bathrooms, when I clutched my stomach in agony – every time, I had explained it away as ‘this is just how it is, and tomorrow I’ll be a little better’.

But fever, that was different. And now I know better, too – the nurse reprimanded me (gently, kindly, softly) for not coming in sooner. I should have known better then. I remember Googling ‘what temperature means you need to go to the emergency room?’  – I didn’t really think about the fact that my maximum, my tolerance, was probably different from the average able-bodied person.

But I went, and thank god for that, right? Because intestinal perforations aren’t the kind of thing that spontaneously correct themselves. They’re the sort of things that cause sepsis and death.

But I won’t go into too much more detail, because I have a piece of writing about the surgical experience coming out in a journal sometime this year, and I don’t want to inadvertently steal skerricks of feelings from that.

Two years, though. Two years of ‘good’ health. Two years of healing and hiccups, and only one colonoscopy. One! How wild is that?!

Here’s to it continuing. I may never be normal – my exhaustion, my depression, my strange curly dietary needs, my phone alerts every couple of weeks to inject – but I manage to be a better version of myself now than I did before.

The Crohn’s Saga (to date)

When I talk to people, I speak freely. I open my mouth, and words come – thoroughly rehearsed, to a point. Every time I tell my mirror about my life, it’s a slightly different rendition of the same song. This is how it goes.

In high school, I was a swot. I went to a posh school, I was a high achiever, I was a musician. I didn’t even think to be rebellious until my last year, and my rebellion was not of the extreme variety. Most of my free periods were taken up with scholarship classes, but swot that I was (am, at heart) I had far too many, and three sessions overlapped.

So on occasion, I would tell art history I was going to French, French I was going to Spanish, and Spanish I was going to art history, and spend the fifty minutes feeling guilty while scribbling rambling poems in my binder instead. I got a second piercing in one lobe. That was my acting out. Continue reading The Crohn’s Saga (to date)

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.

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!

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!

sort of back in action! a photo/gif essay

hello, friends and followers!

ALIVE!
ALIVE!

i’m properly back home now, after one night at my mum’s, since she’s closer to the clinic for follow up appointments, such as i had this morning, and with several more to come. yay! my energy and concentration levels are still a little lacking, so it may be a little while before i catch up on a whole week’s worth of poems, but hopefully i’ll get there.

everything’s healing nicely, according to my nurses, and i decided last night that, in the grand tradition of naming body parts (you know some people do it), my temporary stoma is called buffy.

scrunchy buffy mouth with red lips is not unlike the stoma’s appearance!

because it’s kinda badass (can i get an amen up in here for modern medicine saving lives?)

oh, ru.

yes you can.

and also it could probably scare vampires away.

i’m still getting to know the intricacies of the post-subtotal-colectomy (technically a hartmann’s procedure) world, but i’ll get there. considering how many IVs i had in (three total, plus one arterial line), i only have one substantial bruise (aside from the ones on my abdomen, of course). everything was done laparoscopically , which is great, in terms of healing time, though it means my scars will be much less impressive than if it had ended up having to be an open surgery. coming off anaesthetics was crazy – i’d never been under general anaesthesia before) – everything was so hazy and sleepy and strange, and i never realised how much i’d appreciate an extra IV just in case anti-emetics needed to be injected. the pain pump was great – although since i was doing pretty well they initially took it away on the second post-surgery day, which didn’t end so well (puking, crying in pain, the whole she-bang). i was understandably nervous the second time they posited taking it away, but my use was way down from previous days, and it all went well in the end.

i even took a surgo-selfie the night before, while dealing with the grim delight of bowel prep.

when life gives you lemons, instagram them?
when life gives you lemons, instagram them?

the nurses/surgeon/registrars/anaesthesiologists/etc were all brilliant and helpful and informative and all the things that you want medical professionals to be. the food was actually pretty decent, when i was up to eating, despite the fact that i was limited to the low-fibre menu. the hospital itself is actually a surgery specific centre, so there’s no emergency department or anything other than people on the wards and theatres for the operations, and it’s all pretty flash, almost more of a fancy private hospital feel. i had my own room, there was carpet in the corridors, i had a view of rooftops and the hunua ranges behind. pretty sweet.

hello, south auckland
hello, south auckland

i accidentally stained several of their HOSPITAL PROPERTY pillowcases and gowns pinkish. even though it’s weeks since i dyed my hair.

not weird. at all.

i also learned, over the course of coming off anaesthesia and dealing with oral morphine what colour straight bile is! that was educational.

(for the record, in my case at least, it’s a dark forest green. not unlike a pair of cords that i wear all the time. guess they’re going out of circulation for a while).

i also managed to read three books over the course of my hospital stay – bossypants, by tina fey, paper towns, by john green & city of bones by cassandra clare (i know, i know. but i work in the book industry, remember. gotta keep on top of what’s in vogue) – along with completing exactly one sudoku puzzle and playing quite a bit of candy crush saga (which i only just started playing on my second to last day, and i do kind of understand the collective obsession).

i can’t think of anything much to say. i’m mostly pretty good with the pain and whatnot, at least while the tramadol’s in my system and i’m lying prone. sitting up is possible for limited periods, as is walking around, but both kinda suck after a while. and the process of moving between sitting/lying/standing is pretty awful.

not unlike this.

but everything’s getting there.

now, buffy and i are going to have a rest and watch some gilmore girls. hopefully some proper writings will occur tonight.

the official countdown begins

Here are some numbers – I’m 23 years old. I’ve been diagnosed with ulcerative colitis for a smidge over two and a half years. I’ve had IBD-type symptoms for 4-5 years. And in 18 days, I’ll be getting a partial colectomy.

Yes folks, I’m booked for surgery. September 11th, of all days. I will be heading out to the Manukau Surgery Centre, and I’ll be there for at least 3-4 days. Approximately a third of my large bowel will be removed – though they won’t know for sure until they’re going in, of course – my last scope was in June, so it’s possibly that things are looking slightly different, but no matter what, that left side is on its way out.

I’ll wake up with a temporary ostomy, in all likelihood – there’s a lot more risk of things not healing up properly if everything is reconnected straight away. I’ve therefore been eyeing up various sassy wraps and high waisted underwear (some of the ones that Awestomy have are particularly boss, and I’d kind of like a pair regardless of whether or not I had a bag to keep safe!) – but I don’t want to commit in case my stoma winds up being particularly low or high, meaning certain garments would be more or less appropriate, depending.

I’ll also be off work for about a month. If I’d been heading for a total colectomy, it would have been more like six weeks, but a month is what I’ve been advised for this partial colectomy – thank jebus, because I’ve got approximately 18 days of holiday pay accrued (and a day and half of sick leave left), so I should just make it through without having to worry about arranging a temporary sickness benefit, which would only just cover my rent and weekly household expenses, plus $5, so that’s not exactly ideal).

I’d be lying if I said I wasn’t nervous – now that I have an actual set-in-stone date (and it’s only two and a half weeks away!), it’s all even more real. I’ve had the initial consultation (which I’ve probably mentioned already), I’ve had the preemptive MRI (to check in on my small intestine – jury’s still out on that one, to the best of my knowledge, so I’m still hovering in the ‘could-it-maybe-be-Crohn’s?’ camp), and next I have the actual final pre-surgery appointment on the sixth. And the the big show the next week. I know there are risks involved, obviously. That’s the scary part. But most of all, I am excited that there is finally progress being made. Something is getting done. It’s not the final solution – there’s another operation or two before we even think about being at that point, but it’s something – and the idea that I could wake up with most of my pain and problems gone… that’s pretty fabulous.

I’ll definitely be keeping y’all posted as things progress.

Eeek.

Love and guts,

Briar

things that are scary…

…having a colorectal surgeon tell you she does actually wonder whether it could be Crohn’s, not ulcerative colitis, because of the area of involvement in the lower colon.

It’s more of a ‘we need to be sure before final surgical decisions are made’ type situation, because my case is evidently a bit peculiar. People heading in for colectomies don’t tend to be left-sided folks, like I am – so it’s unusual territory for the surgeon, apparently. The current plan is to take out most of the diseased section, rather than the whole-colon-except-a-rectal-stump as would be the usual course of action for a UC colectomy. Since for me, taking everything but the stump would mean taking a whole heap of currently healthy bowel, and leaving like a third or even half of the diseased bowel behind. Which just doesn’t make sense.

That could be happening as soon as September. Sometime in the next few weeks, I’m going to get and MRI so they can take a peek at my small intestine, get a bit of clarification on the UC/CD situation. It’ll be a blast trying to make that happen in parallel with one of the busiest times of the year at work, but we shall see.

That first surgery would involve about three days recovery at the hospital, and then about a month recovery at home before being in back-to-work mode, apparently. Which is in all likelihood an impossible amount of time to take off, especially given that it’s just the first of at least two, possibly more, surgeries. So I’m going to have a chat to the higher powers at work, and see what we’ll do. And in the meantime, do the necessary investigation into temporary sickness benefits and whatnot, so that I can, you know live.

Sometimes it does just feel like this whole thing is getting far too drawn out, like I’m going to end up spending half my twenties just trying to get stable or moderately healthy in order to go on with life. There are so many things that I should have achieved or done or seen by this stage, and there’s just been no way to make it happen. I’m 23. I’m sick. I’m looking at the prospect of having not one but two stomas over the course of my operations – one colostomy on my left side initially, and later down the line, an ileostomy on my right side, depending on what the consensus is after the first op. And who knows – if stuff goes wrong, either of those could wind up being permanent.

At 23.

That’s scary too.