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

magic juice – adalimumab adventures

I remembered that I am very nearly due for my next jab, and realised that I’m all out of meds. I’m not very good at maintaining a healthy array of fridgular options, but I can usually be depended upon to have a syringe or two of expensive medication tucked in between a Lush face mask and a block of Gouda on the edge of turning.

***

Last time I picked up my Humira, I had the sudden thought that it’s the most expensive thing I ever put in my backpack these days. Two syringes technically cost more than my MacBook Air. Back when I was on weekly doses, I would pick up four at a time, and that would be approximately $3600 value, by my understanding. So that’s even more than my flute’s worth. If I took my flute anywhere these days.

Fortunately, the three month dose only costs me the standard $5 prescription fee. Thanks, NZ.

***

I went through a phase where I was incredibly needle-phobic. It was after my last surgery. I guess my abdominal nerves were feeling particularly antsy. Once a week, I would dissolve into tears, and spend half an hour or so working up the nerve to grab the pen and click it against a pinched fold of stomach or thigh. After a little while, Uther started doing it for me every week. He’d proven his worth with actual syringes when I was needing daily enoxaparen injections following the surgery. His mum’s a doctor and his dad’s a nurse, and with a theatre background it only makes sense that he’d be capable of taking on the role of medical aide, I suppose.

***

One week I forgot to pick up my prescription until it was a few days overdue. I wasn’t feeling too great, so thought I’d best deal to it immediately. It was the middle of the working day, so I went to the stock room – via the lunch room and office where I advised people to ignore yelps of pain and washed my hands – and laid down on the little couch usually used for hungover naps and reading sessions and hiding from the floor when the world’s too much.

I didn’t yelp. I unpackaged the pen, tearing off the paper that covers its little plastic home. I ran through the steps that Lisa the IBD nurse at Wellington Hospital walked me through so carefully: check the name, the dose, the expiry date. Wobble it to and fro to check that there’s the bubble in the liquid. Rub the pen between clean hands to warm it up, if you’ve taken it freshly from the fridge. Apply the alcohol pad to the designated injection site in a circular motion – be sure to rotate between different locations.

Despite my abdomen housing all of my major worries, the subcutaneous fat layer of my stomach is more cooperative than that of my thighs. I switch from side to side: my right, fleshy but unmarked (except by small shadows of incisions); and across the scar tissue zip that divides my stomach in two, the left side, where I must be careful. The skin there is interrupted by the puckered divot that was my stoma.

I remove cap 1 (pale grey; protecting the needle) and cap 2 (maroon; avoiding misfires). I pinch skin where the alcohol is fresh, cool and clean. I place the circular grey end to my skin and prepare to click down on the count of:
1
2
3
*bang*
1
2
*whimper*
3
4
“fuck fuck fuck fuck fuck fuck”
5

At the count of five, usually I’ll have heard the whooshing sound that means It’s Done. You’ve Done It Again, Clever Clogs. You’ve Stabbed Your Stomach And Made The Expensive Magic Juice Go In. Often, though, I’ll keep counting:
6
7
8
jesus CHRIST”
9
10

Especially if it’s one of the times that I’ve had gritted teeth and a swirly head and I’m not quite sure if I heard the whoosh or not. By the time ten seconds are up, everything is always done. I check the barrel of the pen, and see the yellow marker in the window where I checked for the bubble before. Everything has worked.

Sometimes, blood will bead at the entry site, but my dedication to wound care depends partly on how much I want to garner sympathy. Every now and then, I reckon, with chronic conditions like Crohn’s, you’re allowed to be a little pathetic. I find a plaster in the first aid kit and gently apply it to my skin, wincing as I pull poorly chosen jeans back up.

***

Humira is the single biggest pharmaceutical cost in New Zealand. At least, the figures that I saw at the end of 2014 stated that. Perhaps it’s changed since then, especially as the field of biologic medications has grown and evolved. It’s used for Crohn’s, for rheumatoid and psoriatic arthritis, for ankylosing spondylitis, for psoriasis. Chronic conditions. For many people, it’s the one thing that really makes a difference – and so, it’s used widely within those circles, at least at the severe end of things, and that adds up.

Because of this cost, it requires special authorisation numbers, and for Crohn’s, at least, that means filling out a CDAI (Crohn’s Disease Activity Index) form to prove that it’s doing what it’s supposed to for you, and that you need to stay on the expensive fancy medication. When you’re going through a patch of relatively wellness, it’s a moment of being reminded that you’re constantly being examined, looked at, considered. Not always for your own benefit.

Eventually, I’ll have to stop it. Because of the cost. But for now, I don’t know where I’d be without it. Nothing else has ever worked for me. I’ve said that before. These days, my total medication regime is down to three pills a day and one Humira jab a fortnight. And two of those pills aren’t even explicitly Crohn’s-related! Sure, I have Tramadol and ondansetron and Gastro-soothe ready to go just in case; I have tail ends of iron meds and a few rogue prednisone tabs rattling around somewhere. But compare this to the fistfuls of pills I used to take daily, along with a full-blown hospital infusion every six weeks. 8 Asacol, however many prednisone the day called for, azathioprine, at the very least a Tramadol and two Panadol – often enough, two Tramadol just to get out of the house and more as needed throughout the day.

I am not cured. There is no such thing. But I can live my life, for now. Thanks, Humira. I don’t know why I suddenly decided to write a 1000-word ode to medication, but here we are. Long may my special authorisation numbers be approved.

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.

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.

and habit-forming

And a quick health related post as well, because shit’s been going down! Kind of!

Well, to be honest, it hasn’t been anything that wasn’t already expected. I went in for an appointment on Tuesday, with the nurse and doc running the trial I’m on. Hypothetically, it was for my next dose of the drug, but we all went into it knowing that, unless something had happened of a dramatic nature over the weeks beforehand, there wasn’t any point continuing. So we’re not.

And I finally nodded, in moderate defeat, when prednisone was brought up. The many and varied medical staff who I deal with have all been very understanding of my reluctance to take steroids, and so I’m only on a low dose, and will be tapering after a month. I’ve been feeling a little better – I’m not sure if it still needs a day or two to really kick off, or whether the dose is just too low… I’m really hoping the former. But regardless, the slightly more major thing, kind of, since the pred is just a temporary measure, to hopefully jump-start my feeling better (although to me it feels sort of like a bigger deal, since I’ve been saying ‘…no, thank you’ for the past year, almost) is that next week, I have my first infliximab (aka Remicade) infusion. Fiveish hours on the IV. Hooray.

I mean, I’ve had an iron infusion before, so I kind of know what’s up, but still, megadrugs! Problem is, the trial drug I’ve been on is a TNF blocker too, and I had minimal – if any – response to it. So it stands to reason that the infliximab (I’m getting used to calling it that, even though most of the internet does refer to it as Remicade, because my medical folks all do) may well not work for me either. But in the positive column, it has a proven track record – been around since about 1999, I think? – as opposed to being in phase II of a trial.

So we’ll see. Maybe I’ll even liveblog (or livetweet, more likely, let’s be honest) the whole exciting experience next Wednesday! It is fun slightly freaking out one’s Facebook friends list with sassy bathroom mirror pictures of yourself attached to an IV… oh wait, here’s one I prepared earlier!

What a sexy face, n’est-ce pas? And that bedroom hair! Oh, stop!

But yes. So, we continue the quest towards Successful Medication Ideally Without Total Colectomy. Which currently means that I’m taking upwards of 15 tablets a day, in addition to the soon-to-occur infusions. What an exciting life I lead. Oh, and this whole starting infusions thing at the same time as starting meds with possibly super-duper fun psychological-and-other-stuff side effects? All at the most stressful time of year for me as a textbook buyer for schools. SWEET AS.

angry birds

And by birds, I mean the evil ones that live in my large intestine! And by evil birds in my large intestine, I mean pain in my large intestine! What tomfoolery!

So. Here’s where I’m at, colitis-wise, at quarter to ten on November 28th, 2012, approximately two years since being diagnosed.

OW.

FUCK.

BLOOD.

OW.

Get the picture?

I’m on a trial for an ‘amazing’ new colitis-specific drug (as opposed to most other treatments, which are designed more for Crohn’s/rheumatoid arthritis/etc) which ain’t doing diddly squat. The first part of the trial was uber-frustrating, because nothing was happening, but it was double blind, so we couldn’t be sure whether it was the placebo or not, though there was a 1 in 3 chance that it was, so I was hopeful that when they pulled me off the double blind and set me up for the open-label that everything would start looking up. I’ve had three doses, and it’s two weeks since that third set of injections, and really, nothing’s changed. The only good thing that’s come out of the trial so far is the extra medical attention it’s afforded me (and therefore lots of flexi-sigs and even another full colonoscopy, which, as un-fun as they sound, are useful in terms of doctor’s knowing for sure what’s up, and, truth be told, the anaesthesia drugs are pretty kicking). That, and Tramadol, which is my new biffle and actually helps get me through the work day without writhing on my wheely chair and cuts down on the number of bathroom visits, too.

As well as the trial, I’m on minimum 7 and a half tablets a day (not including the Tram capsules I pop most mornings), including 6 Asacol, which I’ve been on for nearly two years now, and one and a half azathioprine (which they also give to organ transplant patients! yay intense meds!). I try to take iron supplements and multi-vitamins when I remember, because whilst my iron levels are okay at the moment, they’ve been known to get awfully low (like, guuuurl, you are so anaemic, you need an iron infusion, come hang out in haemotology low) and the multi-vitamin is because most fruits and veggies upset my stomach (I use that as a general term, one tires of using colon or large intestine in every other health related sentence, forgive me). My vegetarian days are but a distant memory, with legumes off the table and most dairy being avoided. No soy, either. Oh boy.

So if this trial doesn’t work, and, at this stage, it’s not exactly looking good, it’s Remicade/inflixmab infusions next. Except that the trial drug has a similar mechanism to Remicade, apparently, so if it hasn’t worked, the Remicade’s unlikely to either. And then, realistically, surgery. And to be honest, if the doc said to me tomorrow that they wanted to take my colon out the next day, I think I’d say yes. Because the reality is that, if the trial drug works, or if Remicade works, I’m going to be tied into going into hospital every 4-6 weeks for the indefinite future. And the side effects of them (and the pills I take, too!)  can be pretty freaking awful (bone marrow failure, higher chance of melanoma, just to name a couple). To be honest, I think I’d rather take the repercussions of a colon-free existence over that shit, so to speak. No cancer-risking medication? No chance that I’ll become immune to the meds? All in exchange for a few months with an ileostomy and then getting an internal j-pouch? Sign me up, bitches.

And now, I’m getting sleepy and incoherent. That’s what happens when you type up 600 words of colitis-talk whilst in the middle of a gas-cramp attack. Time to take me pills (and maybe some painkillers) and try to drift off into blissful sleepy oblivion.