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

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)

Small Mercies – TPPA discussions and biologics

We have heard this morning about new developments within TPPA talks, after several days of delays brought about by continued discussion on various topics, including dairy, the automotive industry, and biologic medications.

People understand what dairy means to New Zealand, and what the automotive industry means to other players in the TPPA, but ‘biologic’ is something of a mystery word. Some articles refer to cancer sufferers, some go into no detail at all, just that word, ‘biologic’.

It seems like it’s important for people to understand the significance of biologic medication for individuals with a variety of different conditions – and why it’s particularly important that issues like patents dealt with reasonably.

At their root, biologic medications or biopharmaceuticals are those derived in some manner from biological sources, rather than created chemically. The category can include vaccines, chemotherapy agents and blood products – but some of the most well-known biologics are immunomodulators that are used in the treatment of various inflammatory diseases.

‘Inflammatory diseases’ covers some things that you might never consider to be related. IBD (inflammatory bowel disease – most often Crohn’s or colitis), rheumatoid arthritis, ankylosing spondylitis, psoriasis – these are all diseases involving the immune system that have severe inflammatory components – whether it’s joints, skin or intestines. All can have major complications. All are chronic conditions that the patient potentially has to deal with every day of their lives. There is no cure, there is only treatment. And, you guessed it – biologic medications are the frontline of care for such conditions.

Biologics are complicated. The molecules of the drugs themselves are highly complex – and because they are taken from cells rather than cooked up to a recipe by chemists, when patents expire, things get a little tricky. The original developer company does not have to provide any original cells or materials. Competing companies can access the final publicly accessible product, but that’s about it.

So unlike situations with ‘regular’ drugs, where there’ a particular combination of compounds to put together, and that’s the drug, biologics can’t be perfectly replicated. Instead, competing companies can create what are called ‘biosimilars’, from their own research into the original product. There is rigorous testing in place before these biosimilars can go on the market – they are even more tightly investigated and controlled than the original biologic. So if they make it to market, they are a viable alternative.

Alternatives are great. They create competition in pricing, which results in a cheaper product to the consumer – which in a country like New Zealand means both the tax payer and the patient themselves. And pricing is a huge issue here.

Case in point: adalimumab. Currently known mostly by its brand name, Humira, adalimumab is used in the treatment of all of the inflammatory conditions listed earlier. It is administered via subcutaneous injection – either a pen, or a syringe – mostly on a fortnightly basis. It was, according to Pharmac figures, the highest expenditure medicine in 2014, with a total spend of $62.2 million. This was slightly lessened by supplier rebates, but still. Adalimumab usually incurs the regular $5 prescription fee per three month supply – and this is where we thank our lucky universal healthcare stars, because the actual cost of a two-pack of syringes is nearly $1800.

This is all good to know. But more important to the issue at hand is that the patent expires next year. Which means that all of a sudden, it might not be AbbVie’s Humira that provides the best product at the best price. It might be an alternative version of adalimumab by another drug company. That’s up to Pharmac to decide, when such options become available and legal.

Whichever company’s product is chosen, the price will almost certainly go down considerably. Which means a number of things. Other medications could now be budgeted for that couldn’t in the past. The criteria for patients to be considered for adalimumab treatment could be widened.

Adalimumab’s future looks to be fairly steady, going by information available at this time. But the future of forthcoming biologics is an issue that has kept TPPA negotiators battling it out. The US fought for twelve years of patent protection, claiming it was needed to encourage innovation. Every other nation involved in the talks was against it – affordability being a key factor.

Though it appears that the wording is yet to be finalised, the deal as it now stands is that countries will maintain their previously existing patent periods – five years for Australia and New Zealand. Concerns have been voiced that this is not yet set in stone – Annette King, acting leader of Labour, has pointed out that Doctor Without Borders are claiming it is effectively going to end up being an eight year period. In the coming days, hopefully more will be made clear about precisely what has been agreed to – in practice as well as in writing.

New medical innovations are being developed all the time. For now, adalimumab is a key component to the wellbeing of many patients. Should another biologic drug come along that is more effective, it’s only natural that people would want to give it a go, and Pharmac is going to be able to exercise much more leeway with criteria if the costs involved with funding the drug are likely to drop significantly in five years, rather than twelve.

Regardless of your stance on the TPPA as a whole, the fact that this element of healthcare has been fought for is drastically important.

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!

National Health Blog Post Month Part 1, 2 & 3

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

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

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

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

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

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

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

Nov. 3
My Mascot!

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

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

how to handle stomal surprises like a pro

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

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

Continue reading how to handle stomal surprises like a pro

staring down the barrel of re-diagnosis

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

It wasn’t great.

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

The best laid plans…

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

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

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

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

NEWS!

Hello, fine folks who read these pages! I’ve been doing some tinkering over the last few days, as a result of thinking about what directions I want this blog to go in – but at the same time, how I want to pursue my online presence overall. So… I’ve created a new blog/website explicitly for the health related topics that I’ve blogged about so very much here – IBD and its affiliated psychological issues, like depression and anxiety. It’s (hopefully) going to become a place for more people than just me to share their stories – but to make that happen, I need to get people reading and submitting. So, if you are at all interested in following my intestinal journeys, come and join the party over at wamblecropt (the name is explained on the blog!). And if you’re someone with ulcerative colitis or Crohn’s disease yourself – or if you know someone who is – please get yourself or your someone joining in the discussion, because awareness and outreach needs voices to spread.

So that’s the new website – but don’t despair, I’m still going to be keeping on keeping on here. The 365 pieces project obviously has a ways to go yet – and I’m also planning on upping my reviewing came (if you haven’t already seen it, check out the review of Eleanor Catton’s The Luminaries that I posted earlier today. And if you’ve got any recommendations for things that you think would be worth my checking out and reviewing, let me know!