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)

The dark and the difficulty

On operations and depression and musical talent wasted.

Sorry, more angst before I get back into reviewing. It happens.

There is a Banksy poster on my wall – The Girl With The Balloon’. There is always hope. I bought it in a lighter time. Now, even though it is opposite it my bed, I rarely notice that it is there. Unconsciously ignoring the message?

Overworked and overwrought; life is catching up on me. Study and work and never saying no to requests for extra hours; trying to create my own things on the side. And on top of all of that, chronic illness and depression, and exhaustion.

It’s no wonder I’ve spent the last three mornings in bed, even if they have been tinged with guilt and a sense of irresponsibility. Like I haven’t earned the right to feel incapable of scooping myself out of bed in one piece without every fibre of my body – both physical and mental – screaming in protest. You need to REST.

Sleep is for the week, they say, and it may be true. Lately, sleep takes a long time to come and in the morning I can’t muster up anything that could be called energy. Yawning on nine hours of sleep. Waking up before alarms go off, but incapable of going back to sleep because the brain is laden down with feelings of guilt and fear and frustration.

I was going through some old word files recently, and found a bunch of ‘what I want to do with my life’ type documents from when I was sixteen/seventeen. Apart from using lyrics from ‘Girl Anachronism’ as my angsty version of Lorem Ipsum when I got off track, it’s so… hopeful. So upward gazing.

“what do i want with my life? what sort of a career do i want? i have no idea. i like the idea of too many things, i don’t love the idea of doing anything, right now. except for crazy impossible things, like tv presenter, radio presenter, scriptwriter, full-time author, actress, musician. artist of all trades. bette-type art gallery person. i don’t know. i will wind up being a teacher, probably. i don’t know what possibilities i have. i just know that i want creativity and recognition.”

I wrote the word ‘skinny’ six times in one document. Sorry, seventeen-year-old self, still not there. I wrote a hypothetical future in which I studied jazz at Victoria and modeled my wardrobe on Vita from The Tiggie Tompson Show and planned piercings at the top of my ear (well, that part I fulfilled).

“Going to be a French speaking, Classical and Artistic jazz musician who also writes. A writer who also plays jazz. I might even be in a rock band. I will have long black hair, with a Karen O fringe, then I will cut it short and dye it bright blue.”

I’ve never been in a band, and I’ve never really played jazz. It seems like my brief fascination with pursuing it was a sort of school leaver midlife crisis. My music has fallen through my fingers and the only instrument in this city is my ukulele. And in stress I chew my fingernails, making strumming more difficult. My flute and my voice have fallen on hard times, and they probably can never be revived to the standard that they were previously held to. Such standards that I held myself to.

That I still hold myself to – but now giving up is the option. If you can’t do it properly, don’t do it at all – and so with school behind me and the only musical options either community based or semi-professional I let it slide away through formerly nimble fingers. Not dedicated enough to my craft for the AYO or equivalent, but too proud to play for a non-auditioned ensemble. And now, so out of practice that one wonders who would have me anyway?

What a tangent.

I nearly ran out of anti-depressants. Yesterday I had one pill left, and I finally worked up the will power to call the GP’s office to ask for a new prescription. It cost me $16 for the piece of paper. I’m nearly at the end of my second bottle of mercaptopruine; I’ve done my fourth Humira injection at home. To think that I spent a couple of months of last year free of all medication (apart from industrial strength painkillers) – how strange and fancy-free.

Soon it will be a year since my surgery, and thinking about that makes break down even more. I was supposed to be fixed. I was supposed to have had the reversal operation by now – I wasn’t supposed to still be smiling and strong and telling people how totally great and normal life with an ostomy can be. Because it’s horrible. It’s better than constant Crohn’s-type hell-pain, but it’s horrendous none the less. Something as simple as wondering where the hell to stash your boxes of supplies – or the fact that going out without a handbag or backpack is out of the question because one needs to always be prepared for an emergency situation. Or the constant gurgles.

I may write positively about it at times, but that’s only because I want to be seen as normal and capable. I don’t want to be this broken girl who fell so low because her body and her mind let her down.

 

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.

sometimes when i dare to tell you

sometimes
i am flim flam
or skewiff
or shmeh-bleh
or other phrases
or syllables
crammed together
on the spot
because it’s easier
for nonsense
to be spoken
than to vocalise
the deep other
that lurks
mostly in a corner
but occasionally
darting out
shoving sense from
all sectors
and chaos reigns supreme

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.

uber-cool? under-carriage? uphill climb? ULCERATIVE COLITIS.

I originally wrote this to enter into the xojane.com ‘It Happened To Me’ competition – only to then read in the T&Cs that it’s only open to US citizens. So, to the blog! Basically a general introduction to life with chronic bowel disease.

I was eighteen when I first encountered blood in the toilet bowl. And it definitely wasn’t my period. My first inclination wasn’t to freak out and Google what it meant, and it certainly wasn’t to go to the doctor – eighteen-year-old girl talking to the family GP about bowel movements? Yeah, no thanks.

No, my approach was much less sensible – I ignored it. It happened again, every now and then, and I mentioned to my mum at one stage, and she said that it was probably worth going to the doctor if it happened again. I took her advice under consideration. By which I mean I didn’t, at all – so time went by.

I did a semester abroad, spent a couple of months living in Brooklyn, came back to New Zealand and crashed and burned academically. A couple of years beforehand, I’d been in the top echelon of one of the best schools in the country, getting scholarship payments, placing in national creative writing competitions. But now, dragging myself to class was almost impossible. I was, in hindsight, almost certainly extremely depressed, but I couldn’t admit that to myself. I couldn’t concentrate. My visits to the bathroom were increasing in frequency, bit by bit. There was still blood.

I still didn’t go to the doctor.

It wasn’t until I had to go to A&E because I could barely swallow – an unrelated issue, as it turned out – that I finally brought up my digestive ‘issues’, at my mother’s insistence – I had, a month or so before, admitted that this was still an issue, about two years after it first started. The doctor at the after hours clinic gave a me a prescription for some Losec for the swallowing pain, and told me to get my butt to my GP, because with upwards of eight bathroom trips a day, and blood involved on a regular basis, a referral to a gastroenterologist was almost certainly going to be needed.

The blood tests my GP ran came back negative for any parasites or such things, so it was off to gastroenterology. The public health system in New Zealand can sometimes mean it takes a little while to get seen, but as it turns out, when you’re 20 and full of bloody stool, your file gets stamped with ‘urgent’, and you get seen pretty damn quickly. I was also told, before getting referred, that I was extremely anaemic, which made sense, since, you know, I’d been losing blood for an awfully long time. I was told that this would have affected energy levels – check – and concentration – check. The waning trajectory of my academic performance was starting to make a little more sense. The low iron levels were also, in all likelihood, enhanced by my less than nutritionally-sound vegetarianism and obscene coffee/energy drink habit.

Within a month, I’d had my first colonoscopy, and a diagnosis. Ulcerative colitis – not that I’d ever heard of it before. I’d heard of Crohn’s disease, but had no idea what it entailed. Both are IBDs – inflammatory bowel diseases – which some people do confuse with IBS – irritable bowel syndrome – however they really need to be differentiated to understand the severity of IBD. Certainly IBS can be serious and distressing, but the difference between ‘inflammatory’ and ‘irritable’ is crucial. It drives me a little loopy when I read posts on forums, where someone will mention having Crohn’s or UC in a post, and then the comments are full of people saying ‘oh, I know what you mean, I have IBS!’ Crohn’s and UC are auto-immune diseases, that, save for very mild cases, will generally require some serious drugs to attain any level of control over the debilitating symptoms. There’s no single cure for any IBD, and no magic medicine that works for everyone. There’s no cure for IBS, either, but there’s also not the problems of bleeding and inflammation and general increased chance of bowel cancer, at the end of the road.

Over the next two years, I was to find out that I’m one of those ‘lucky’ folk for whom most medications won’t work. I was started on enemas, which was as much fun as it sounds, and they just wouldn’t take. I’ve been on various pills for a couple of years now, and none of them have really helped, until I finally caved and agreed to try predisone, a steroid with nasty side-effects. Since I already had a propensity towards a depressive mental state, taking a drug with relatively frequent incidences of psychological symptoms – not to mention the physical symptoms like weight gain and acne, which would hardly enhance my mood, I was loathe to try them, but given that I’ve run through basically all standard medications, plus a drug trial, it was really a case of ‘try the steroids, or that colon’s probably going to have to come out.’

Which is still might. Though everything’s somewhat under control now, and my days of taking painkillers just to get myself through the morning at work are mostly have mostly passed, there are still days when the only way that I’m going to be able to get to work without having an accident and excruciating pain are by popping some Tramadol. And I hate that. I hate that I have to go into the hospital every eight weeks to get hooked up to an IV for infusion treatment (which I’m still waiting to see whether or not it will work) – I want to be travelling, exploring, not worrying about the fact that I have to be here for a very much not portable treatment. Or that if I did go travelling, travel insurance would either be prohibitively expensive, or not cover me for any UC related problems – which could occur regardless of how careful I am. Just because I avoid eating foods which are particular triggers doesn’t mean that I won’t find myself bed-ridden. By the same token, ‘healthy’ foods for the masses are some of the worst triggers for my particular brand of UC. Raw veges, any kind of legume, whole grains – no no and definitely no. Any large amount of dairy is no go, anything soy based is dangerous… my vegetarian days are certainly a thing of the past.

I’m lucky, in some ways, though. I mentioned the public healthcare system earlier – my current infusion treatment, which costs thousands, possibly tens of thousands per year, is entirely funded. In a twisted way, I’m also ‘lucky’ that my case is fairly severe – it means that everything is taken very seriously, and I’ve got a couple of doctors and clinic/research nurses who are all very invested in my getting better. Even if, as I am now faced to admit, that may getting some pretty serious surgery in the not so distant future. If it means that my life is mine to live, and not controlled by this fun-filled disease, so be it.

I want to educate people as much as possible on IBD, and even IBS – since, realistically, us bowel-challenged folk ought to stick together, since it’s not something that people like to talk about – and possibly as a result of that, it’s not something about which people actually understand the severity of the issue. Sometimes when I mention that when I had an iron infusion (since my anaemia was so bad) I was on a ward with chemo patients, people start to grasp that, hey, there’s more to whatever this thing is than Briar having to go to the bathroom fifteen times a day.

I did manage to finish my degree, though certainly not to the high level I’d expected when I went in. Now that my symptoms and iron levels are the most controlled that they’ve been in years, I’m contemplating going back to study, to get back on track with life goals and plans that have laid by the wayside for far too long. I’m also working on a YA novel involving a main character with IBD, because hell, if I’d been diagnosed any younger, it would have been a major blessing to have encountered someone in the pages of a book who was dealing with the same issues as me. And writing what you know is always a good place to start.

It may have taken over my life, and changed it – but with a bit of luck, the continued developments of modern medicine, and a hell of a lot of determination, I’m working on changing it again – not change it back, but make it even better than before.