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.

drained

So drained. So overwhelmed. All I can think about right now is how I don’t have any pictures of Olive and me together. And now there will start to be pictures of Olive and The New and Horrible One. And that really, really depresses me.

There is something both hilarious and terrible about being in tears for most of the evening while a movie called ‘LOL’ plays in the background (the French original, not the Miley Cyrus remake, for the record).

Here’s hoping my face isn’t too puffy for interactions with Camilla Lackberg tomorrow. Because apparently my current tactic in the Game of Briar’s Life is throwing myself into more work than is sensible.

I miss my darling Lolla. I miss that whole part of my then-life, those evenings and afternoons on the Shore. The first Gecko Press book I ever bought was a present for her. Zou and the Box of Kisses. I organised the presents, then, I made the suggestions. One of her particularly precious toys is a stuffed zebra. So it was perfect.

And now I’m down-country, and there’s going to be a new name tagged onto Dom’s name when he goes visiting his sisters, and it absolutely breaks my heart. More than anything else, in this moment, to be honest . I haven’t yet been able to bear putting up the pictures that I have from her and Felix.

Did you know that among all the rest of the eateries, Cuba Street is home to two cafes that happen to be called Olive and Felix? And remember that the daily newspaper in Wellington is the Dominion Post – AKA the Dom?

Escape in the form of someone new really needs to come and sweep me off my feet with Camera Obscura songs, or something.

distance

Some side effects are not known until they are experienced; nobody keeps a record, because the list would be too long. The side effects of distance present themselves to the individual as time goes by, and all cases are different.

I sat in Civic Square, after everything was established as being ‘okay’. For the time being. I walked behind a tourist family who chattered away, wondering at their whereabouts. The mother noticed the gulls padding around, screeching at one another, and commented that they must be back near the sea.

They were, of course, and yet all I could think about was seeing a lone seagull in Montreal, several months into my time there. Montreal is on an island, but it’s a long way from the sea. It was a moment not unlike the first rainfall that I experienced while there (rain! this is so exciting! it’s warm enough to RAIN!), but a little more emotionally fraught.

Homesickness is a bitch.

But this isn’t about homesickness, not exactly. It’s about difficulty, it’s about frustration, it’s about being in the wrong place – or someone else being in the wrong place, at least. It’s about distance.

I have already written here about how my dad is in Honiara, in the Solomon Islands. Fortunately, it has been a milder couple of weeks for them since the floods and storms and earthquakes of earlier this month. But the worry still exists – the thought that something even more dire could yet happen, while I sit in my windswept but mostly safe house on a hill in this strange little corner of the world I call home.

Then, closer to ‘home,’ yet still far away, Auckland looms to the north. Last night, I forgot to turn off my alarm, and so I woke up earlier than I meant to. In scrabbling to turn the sound off, I saw missed calls, texts. And so, I found out, seven-ish hours after the fact, that my mum had had a midnight ambulance ride to the hospital, and was still there.

Things like that will really reinforce the distance.

She was discharged late this morning, and I had just gotten off the phone to her when I sat down in Civic Square. I accidentally dropped a bit of my sandwich, and was inundated by gulls and pigeons. After the initial furore had died down, I watched them wait in hope, a couple of them clearly in positions of authority as they puffed themselves up and marched towards others, undeserving of this chance at scraps. I went to the library, I went to work, my head trying desperately to keep everything level. We drank gin and tonics at the end of the day, and I caught the bus home, everything still churning, and all sorts of write this down! ideas came and went, but this one was the most obvious one to stick with.

And so here it is. Distance.

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.

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.

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.

gollum and government

It seems appropriate, given the current Hobbity furore (which I’m something of a part of, I’ll admit – hard not to be when you were a die-hard LotR fan as teen in the early noughties), that my intestinal word association of the morning as I’m lying in bed writhing (even though I popped Tramadol two hours ago) was of a Hobbity nature.

As I moaned to myself ‘take it OUT, don’t want it,’ some constantly fantastical corner of my brain piped up ‘We don’t… neeeeeed you.’ Granted, if it gets to the point where ‘jpouch looks after us now’, then I won’t even have any angry colon-gollum to talk to (and with its grumbles and gurgles, perhaps it is talking back… bitch). ‘Go away’, ‘leave now and never come back’… bro, those are my vocabulary almost every morning.

The pain for the morning is slowly – very slowly – abating, but this is really just cementing the fact that I really want off this stupid trial. I wouldn’t even care if they decided to skip infliximab/Remicade entirely and just took the damn thing out. That being said, I really can’t take an extensive period of time off work until April (working in a uni bookstore means WEIRD periods of business. March and July are the ‘yeah, you want leave? time to resign, buddy’ months, whereas December is, for most people – except for me, since I deal with the orders for several schools which start back in January, huzzah – our quietest month of the year. The possible problem with Remicade is that typically government funding wouldn’t cover a large course of it for me since I only (at last check) have left-sided colitis, even though the left-side in question is super bad. A long course of Remicade would normally require pancolitis. But, given that I have exercised every other possibility, including way too many months on this damn trial, I think the docs are fairly confident that an exception could be made for me – the hospital has additional funding for situations such as this, or something. Things like this give me the tiniest glimpse into the hell that the US healthcare system must inflict on those with an IBD or any serious/chronic disease really. From what I can tell, it looks as though a single infusion of Remicade runs about 6000USD, and even people with insurance seem to be having to pay a thousand dollars or so towards that.

That blows my mind. It won’t cost me anything, in effect. I know that taxes pay for it, but it’s not like having higher taxes on my hardly noteworthy salary makes me incapable of carrying out day to day work. It sickens me to think that a purportedly first world country can have so many people who think it’s acceptable to maintain such an ‘every man for himself’ mindset, to be so anti tax. No government is perfect, and for sure there are things that they do or say that aren’t to my liking – hell, I can’t stand our current PM or his party – but at least we don’t have to worry that getting sick will bankrupt us. If I had one of these ‘deductibles’ or ‘out of pocket payments’ or whatever the hell it is that the terrifying insurance companies make you pay in the States, I don’t know what I’d do. It would make what is already a horrific thing to deal with so much worse. My prescriptions cost me $3 for a three month supply, regardless of what they are. Because Remicade would be administered in a hospital, it wouldn’t cost me anything.

But, like I say, at this point, I’d almost rather they just take my damn colon out. It may have had 18 or so years of reasonably perfect function, but for the last 3/4 years it has just shut down shop. It’s about 2 years since I was officially diagnosed. And despite going through the rigmarole of Pentasa, Colifoam, Asacol, azathioprine, and now several months of trial injections, not to mention an upper endoscopy, two full colonoscopies and five (I think?) flexible sigmoidoscopies, I’m pretty much as bad as I’ve ever been, if not worse.

So, take it. I don’t want it anymore.

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.