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.

une année sans lumière?

I should be happy.

In the sun, on the street, behind and between pages, there are moments, but they come and go and I have no control over it. Every night, getting into bed, clambering back out to take the little white pill that is supposed to make everything okay. But the pill is to the body like I am to this city, and we both rattle around in this space, not quite sure what we’re doing, not quite succeeding at whatever it is we set out to do.

I feel like I exist in class, at work and at home. That’s it. I have never needed constant social interaction, but to have nothing beyond those three spheres is difficult. The time when I am ‘free’ from academic and work commitments is spent recuperating from life, trying to hold onto this fragile thread of adequate health that I’m depending on. Knowing that I can go (and have gone) weeks, months, without physical human contact is overwhelmingly soul destroying. Nobody to talk to about feeling down, nobody who I can break down in front of and not worry about being judged.

The two months (ish) that I had before I moved down here were the most painful I’ve had. November was the worst I have ever felt in my life, and I don’t say that lightly. I thought I had some certainty, at least in being loved, even if I wasn’t sure what I was working towards in any other facet of my life. Now I am alone, and I am working towards a life in an industry with an unknown future.

The worst part is, that half of it is beautiful. Wellington is wonderful, as a city, and some of the people in it are fantastic, but there are few things more difficult than establishing close friendships from the ground up. My classes are great, the projects I will be working on are brilliant, and my job is the bookstore dream. I have met people from all over the book world, and it has been thrilling – but after every class, every event, every shift, I get on the 14 bus, and go home. The internet, a book, a few notebook scribbles, and bed.

I drink too much coffee. I drink coffee, and then my insides twist and wrench and ache. But I’m tired, because I’m sick, so I need the energy. Hell of a vicious cycle. I eat fruit, because I’m sick of eating junk, and then it hurts all the more. I should be eating low-residue, because everything has fallen to pieces, but it takes a lot of self-control to do that, and when there’s a high chance I’ll be in pain anyway, why would I bother? Like right now. I haven’t eaten anything typically uncooperative, but waves of pain still come. So the tramadol comes out, as do the tears of frustration and pain.

I want to be happy. I know that I have ups and downs even when things are ‘good’, but being lonely drags the downs deeper, and keeps them there. I want someone to cuddle me and tell me my hair smells good. I want to have people to hug hello and goodbye. I want to have stories to write that don’t all peter out because the protagonists are either trapped in a room and it depresses me, or their lives are more cheerful than mine and I find myself jealous of my own creations. It’s easier to sit, watch, occasionally read. Trawl through the internet in the hopes of finding some spark of inspiration or light, or just to pass the time until sleep or the final hope of interaction for the night has been extinguished.

I write this because it is all that I can do. Words are all that I have, because I don’t want to rely on my unpredictable emotions anymore, worrying that the wrong/right Nick Cave song will come on at work and be an emotional trigger, because it represents when Things Were Good. I don’t need to have exactly what I had before, I realise that now – most of the time – but I need to have something. I need to be able to love my life, and not just the city and the books inside it.

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.

IBD vs IBS – let’s talk it out

It’s a serious misconception out there among some people that the similarity in acronyms and the word ‘bowel’ across both must mean that IBD and IBS are fairly similar.

It drives me crazy.

Irritable bowel syndrome can be an unpleasant thing to experience for some people. I’d wager in some cases it can even be quite nasty. But when people flippantly refer to IBD as ‘irritable bowel disease’, rather than ‘inflammatory bowel disease’, it does nobody any favours. It furthers the notion that somehow IBS is comparable to Crohn’s and ulcerative colitis. That if people with IBD could just manage their stress and eat some more fibre, all of their problems would go away. I can’t tell you how many times people have asked me if I’ve tried adapting my diet. If I’ve tried cutting out gluten.

My internal monologue at these moments tends to run along the lines of ‘I’ve just told you I’m having surgery to remove part of my intestines, don’t you think I’d have maybe given diet a shot before getting to this point?’ Externally, of course, I tend to smile tightly and nod.

Yes. I’ve bloody tried cutting out gluten.

Let’s clear it up. Once and for all. IBS is irritable bowel syndrome. According to some figures, it affects 10-20% of all adults. By contrast, IBD, or inflammatory bowel disease (including both Crohn’s and UC) affects only 0.001- 0.003% of the adult population. But it’s not just about being some kind of exclusive club that talks way more about bathroom habits than the average medical gathering. Inflammatory is the key word. People with IBS don’t have inflammation of the intestines (or any other part of the GI tract, for that matter). They may have some abdominal pain, some bathroom related inconvenience, but they don’t have structural changes in the layers of their intestinal wall. They don’t bleed, seep or otherwise ooze. They don’t run the risk of absesses or fistulae forming between bowel and skin – or bowel and other non-digestive organs.

Again with the according to some figures, 70% of IBS patients either don’t need to or choose not to seek healthcare. Virtually all people with IBD will have ongoing healthcare provider contact, given that virtually all people with IBD need some serious meds at some point in their journey, if not constantly. IBS doesn’t need surgery; IBD often will – you’ve heard enough about my ostomy by now, and it sure didn’t just appear one day. Surgery and symptoms them selves can have significant enough complications that it’s not unheard of for IBD patients to die of related causes. Not common, but it is a risk. IBS – not so much.

We IBDers also run the risk of symptoms beyond the gut. Lucky us, eh? Complications can arise in the skin, joints, even the eyes. IBD is autoimmune, and therefore can have some similarities in symptoms with the likes of rheumatoid arthritis. We even share some of our more serious meds with them. When you’re 23 and your knee is playing up, that’s a bit of a health-related wake-up call. We also can run fevers and become severely anaemic and/or malnourished. Not to mention, all of the mentioned symptoms are just the disease-related ones – not even the extra fun that can be in store for those of us on certain medications.

Don’t get me wrong. I know some people who have some thoroughly unpleasant cases of IBS to deal with. It sucks. I wouldn’t wish ill digestive health on anyone. But to equate the two is to be at best uninformed or at worst, downright inconsiderate. It’s like equating a sprained ankle with a compound fracture. One, you can walk off. The other requires a hell of a lot more attention. Unlike an ankle injury of that nature, though, both IBS and IBD are chronic, and that sucks. I’m happy to share in the pain of IBS sufferers – but if they start to try to tell me they know how I feel, that’s where the civility will end.

So if you’re reading this and knew the basics already, arm yourself with the details for your next encounter. If you’ve just been enlightened, educate others if the topic should ever arise. If you have IBS, know that we know it’s horrible to have a busted gut. But know too that you are damn lucky to have an inflammation-free GI tract, for so many reasons.

(figures primarily from badgut.org, the Canadian Society for Intestinal Research. It was the first website that had decent details on it, but other websites like CCFA etc have similar information)

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

come help me be the colitis social media queen?

come help me be the colitis social media queen?

PSA for fellow IBD types – especially those from Auckland – I’m running the Facebook (and possibly other social media) for Crohn’s & Colitis Auckland, and it’s looking pretty sad. I don’t have the budget for advertising or anything (although I may do some flyering around campus and suchlike) – so I’m currently dependent on word of mouth, basically. So if you have Crohn’s & Colitis and are from Auckland, or are thinking about coming to Auckland, or just want a cool place to sound off on IBD related matters with yours truly as the spiffy moderator, then please come and join us at facebook.com/CrohnsColitisAKL 🙂

14 WAYS TO HAVE A RAD TIME, EVEN IF YOUR SIGNIFICANT OTHER IS THE PORCELAIN THRONE.

So, I always enjoy reading lists that bloggers like Gala Darling create – inspirational lists of things to do, places to go, ways to cheer yourself up, ways to celebrate life… all kinds of things. Thing is, by its very nature, IBD – or even severe IBS, I’ll admit it – kind of limits your social/adventuring options. So, I bring to you…

14 WAYS TO HAVE A RAD TIME, EVEN IF YOUR SIGNIFICANT OTHER IS THE PORCELAIN THRONE.

[Section 1 – at home! since, you know, if you’re sick, home is often where the heart, and the head, and the wHole body are]

1. Bubble bath. Perks include – it can calm you down (and stress can be a factor for some people with bowel problems), you can douse yourself in all kinds of sparkly delicious smells to disguise any (probably imaginary, but no less disturbing!) lingering odours that you may be inflicted with, AND, most conveniently, more often than not, it’s the same room as your toilet. SUPER WIN.

2. Bring your world to the bathroom. I’m talking iPod docks, books, laptops/tablets/phones, you name it, it will enhance the bathroom experience.

3. Dance party. If you’re up to it, shaking your groove thing can be very cathartic.

4. Cooking something fabulous. Since nobody knows your own specific colon/digestive system idiosyncrasies better than you do, cook some amazing feast that caters to your specific dietary requirements. Alternatively, junk food that fits your needs is good too. Sometimes, eating ‘healthy’ can be hard for a low-residue dieting IBDer, but hey, if you want an excuse to gorge on something ‘bad’ under the guise of ‘it’s the only thing I can digest except poached chicken!’ I say MORE POWER TO YOU.

5. Redecorating. Having a room/home that you actually like to be in seriously enhances the experience of being at home, and if you’re stuck at home because your colon is telling you that that’s the only thing doing right now, then between voyages to the loo, contemplate how your room could be more badass, and make it happen.

6. Movie/TV show marathoning. Before I ‘knew’ I was sick – but was symptomatic, and depressed, and therefore basically never leaving the house if I could help it, I got through a hell of a lot of Gilmore Girls and Buffy. My life is better for having those shows in my life. Good can come of being a brain-addled, pipe-twisted couch potato!

7. WRITE! Case in point. To be honest, though, when I was at my worst, I was also not really in the right mindset for writing. These last few months have played host to my largest writing output, both blogging and creative writing, in year. But capture what moments you can. You never know how good it might be to look back and see how far you’ve come.

[section 2 – AWAY from home! scary! but possible!]

8. Go to the beach. So, this may sound wacky on several levels, especially for those of you reading this from wintery northern hemisphere climes, but with a little forethought, beach-tripping can be totally doable, even if you’re not at your best. I think the trick is to find a moderately-frequented beach – one that’s popular enough to have more than one public toilet, ideally one that’s actually occasionally cleaned, but not so popular as to mean you’re going to be queuing for ages and risking major bikini-bottom trauma. Let’s be honest – it’s a possibility. Swimming’s not even essential, nor is lying in the sun – just find a shady tree (pohutukawas are best for it, if you’re lucky enough to live in my part of the world) and listen to the waves. Build a sand castle – hell, build a sand-toilet-idol. LIVE THE SUMMER DREAM.

9. Catch a ferry somewhere. Sticking to the seaside theme, if you live somewhere with a harbour, hop on a ferry – they have bathrooms! – and go somewhere new. Or somewhere old. Or anywhere, really. Enjoy being out on the ocean. It’s a damn fine thing.

10. Movies. Your friends will love you for being the one who ‘takes one for the team’ when you offer to take the seat at the end of the row. Little do they know (or maybe they do) it’s just smart planning. Keep your ticket on you. Avoid popcorn, unless a) your intestines don’t have an aversion to it, in which case yay! lucky you or b) you know you’ll have a delayed reaction and that buttery goodness is worth the repercussions. I feel ya. I’ve been there. It’s bittersweet.

11. Art galleries/museums. Major galleries and museums will generally be pretty well kitted out for public facilities – and what’s more, often they’ll give you a handy dandy map when you go in, WHICH SHOWS YOU WHERE THEY ALL ARE. It’s like they’re made for us. Just make sure you check out the map before you go wandering into any old wings that may not be quite so well equipped, okay? Nothing like hobble-running through a voclano-exhibit to try to catch the train on time.

12. Visit your parents/grandparents/siblings/close-and-understanding friends. Especially the first two – always good to keep those that brought you into being happy. A way to leave the house and still have unfettered access to a bathroom? It’s possible! Plus depending on the parent/grandparent/sibling/close-and-understanding friend in question, who knows what kind of delicious baked goods they might unleash upon you?

13. Gigs. I’ll admit, I do still get a little anxious going out to concerts, and, realistically, going to the symphony may not be ideal for the colonly-challenged, but a gig at a regular ol’ bar or rock club? Totally doable. Stay away from major crush areas, towards the side or the back – or even a mezzanine, if there is one – and you’ll benefit in more health and safety related ways than just having an easy UC/Crohn’s escape route. I’d recommend scoping out where the bathrooms are beforehand, though, and maybe steer clear of venues you know have poor lavatory hygiene. Get wrapped up and absorbed in the music, and it’s amazing how, even for a couple of hours, intestines can miraculously settle down.

14. Bush walks. I guess you overseas folks would be more likely to call it hiking, but here, bush walking suits me just fine. This isn’t exactly recommended if you’re in the middle of a mega-flare, but if you’re in a bit of an in-between place like I am, it’s not impossible. No big quests, mind you, but take a drive out to somewhere gorgeous – where the drive is part of the fun – with a small loop track. If you’re in Auckland, check out the Hunua Falls – you can loop down to the falls and back (and by back, I mean the carpark with a Department of Conservation administered toilet block, chur, guys!) in ten minutes, if you need to. You can venture further up other tracks if you want, but even just that little track take you through old forests and up to the beautiful waterfall and the big waterhole thing it falls into. Glorious.

I may add a second installment of this list at some time, especially as I explore the world of not-constant-symptom-ness and what is possible in it. You can do anything is a foolish adage for the chronically ill – but am I going to let that stop my imagination running wild? Hell to the no.