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.

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

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

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

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

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

I still didn’t go to the doctor.

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

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

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

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

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

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

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

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

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

novel concepts

It’s both a good sign – in many, many ways – and also very frustrating that I’m actually in a ‘let’s get working on this story’ frame of mind right now, when, for all practical intents and purposes, it ought to be my bedtime right now. And experimenting with caffeinated beverages again over the past couple of days has produced mixed results.

But I’m actually getting excited about how this ‘novel’ – I hesitate to call it that, because it’s still very fragmentary, and has a long, long way to go yet before it’s anywhere near pre-editing completion, but that’s what it ultimately is – is progressing. I have many documents full of bits to tie in, I actually have a reasonably workable storyboard to get my way through. And I, as of today have a ‘first draft’ document that is tying all of these bits and pieces – varying from a couple of hundred words through to several thousand – together, bit by bit.

I have no idea how marketable this story would be. But it’s important to me, and I think it could prove important to other people too. Whilst in some ways it will be a floaty frivolous hippie Brigid Lowry esque (who is pretty much my favourite YA author) tale, it’s also got the key component of a pretty damn sick teenage girl at the heart of it. Sound familiar? Given how rife things like IBS are these days, and the fact that I’ve never seen mention of Crohn’s or colitis in a novel, let alone one for teens who may well feel they are some kind of super-freak (thank god mine didn’t come along until post-adolescence), I’d like to think that there’s potential readership. Groovy reading for everyone but particularly relatable and necessary for the sixteen year old riot grrrl who’s just been told her colon’s pretty much eating itself. There’s got to be a few of them out there.

Plus, the working title makes me giggle and groan in equal measure. cool-itis. Yeah.

On your local bookstore’s shelves…. one day!

on mental health

For quite some time, I’ve been aware that I probably need counseling, or therapy, or whatever you want to call it. As much as I have unhealthy intestines, I also have a brain that doesn’t cooperate at times, and it’s only been in the past year or so that I’ve acknowledged that this is probably a sign of depression or some other issue with my mental health.

I count my lucky stars that I have a partner who is there for me on the approximately fortnightly (but it can vary) occasions that I completely break down. Sometimes I can get it under control reasonably quickly, and generally prescribe myself an early night (after the boyfriend himself has prescribed many cuddles and reassurances), but other times I just can’t shut it down. Such an occasion occurred early this past week, with the added inconvenience of the boyfriend not being in the country currently. I sobbed, I explained to an invisible therapist in my ceiling just why everything was so awful and everything that I had done wrong and why I probably deserved it, too. I lay on the floor and couldn’t bring myself to do anything else. I was broken.

Maybe in this instance colitis actually has benefits (ha), because it was only when I had to go to the bathroom that I managed to pick myself up from the floor, and attempt a little normalcy. But by the same token, whilst I can’t know for sure whether or not I would have ever developed such issues if I didn’t have UC, I can say for absolute certain that it has exacerbated the problems an unfathomable amount. Consider, after all, that one of the on-going stresses of my life is, not only worrying about the limitations of UC symptoms, but the extremely controlling nature of the medications that I’m currently on. When both the boyfriend and I are constantly plagued by wanderlust and a desire to get out there, I’m being plugged into an IV every eight weeks, for drugs that no other government but my own would provide for me. And I’m not even totally healthy yet. Even typing this out now, I’m getting a little anxious tight-chest action.

It’s terrifying to me, both the idea of ending up alone because my disease limits me in such ways, and the idea that I may never be able to do the things and see the places that I want to, whether I’m alone or not. Or the idea that I’ll go to these places whilst healthy, even if it’s only between infusions, and then suddenly I’ll flare up in the middle of god-knows where, and be financially and/or physically ruined. Because UC is hardly affordable to tack on as a covered pre-existing condition when you’re paying for travel insurance.

And the anxiety – if you understand the delightful specifics of severe UC, I’m sure you can see how constant anxiety is inevitable. And all of these bundled together with an already imperfect mental state + physical disease including brain-sucking anaemia… is it any wonder that my BA really did turn out to be bugger-all?

And now, prednisone, which was really what inspired this post. So far, it’s the worst/best drug I’ve ever taken. I’m pretty sure that I can attribute my current kind-of-remission almost exclusively to the prednisone – I’ve only had two infliximab infusions so far, and that stuff typically takes a while to kick in. My symptoms are certainly better than they were a few months ago – for one thing, I don’t have to take Tramodol just to get to work without my insides screaming at me constantly – the pain associated with the colitis is pretty much gone, for now. The blood is gone. Frequency and urgency are still up compared with a ‘normal’ person, but that’s probably partly psychosomatic, since my brain and insides are so used to ‘gotta do this NOW, buddy’.

But. Even though I’m on a low-ish dosage, I’ve encountered some side-effects none-the-less – though I’ll admit, since it is a low dose, again, it may be partly psychosomatic. And the added mental stress of the boyfriend being away hasn’t been great timing, either. But I’ve been decidedly more… down more often since starting the pred. I’ve had insomnia, at times, I’ve definitely had the increased appetite and weight gain (especially perfect timing, thanks Christmas!) – which in turn has made me feel more self-conscious aaaand depressed!

So it’s a great cycle. But I start tapering the prednisone on Tuesday, so we’ll see if the symptoms stay on the down-low or not… I’m sure I’ll be keeping you informed.

In the meantime, as a combination venture – both making the most of minimal symptoms, and trying to keep myself cheerful, it’s time to wash the night’s worries off, and go on a bit of a road trip with people I don’t see nearly enough these days.

where did normal go?

I’ve been meaning to do a video post, just for kicks, and because hey, why not bring some roguish Kiwi charm to the colitis and literature discussion table?

But that’s not tonight, because I’m suddenly feeling spectacularly sore, and am hour by hour convincing myself that I am getting more and more of a prednisone moon-face. So that’s a blast.

Related, kind of, here’s my current new-drug status…

– Week and a bit on prednisone.
– One and a half days since my first infliximab/Remicade infusion
– Week and a bit on my increased dose of Asacol (4 pills twice a day instead of 3)

 

And the ‘results’? Well, less blood and whatnot. Which is progress. Less frequency, kind of… but I’ve still been taking at least one tramadol most mornings, and just spent quite some time writhing and nearly crying in the bathroom and now am propped up in bed, having taken two tramadol capsules just to try to make the pain go away. I felt exhausted and icky all day yesterday after the infusion, to boot. Fun times.

What does it feel like to have normal insides, I wonder? I really don’t remember. A day has really not gone by in the past couple of years in which I have not either spent a period of time worried about whether I’ll suddenly have issues/where the nearest bathroom is at ALL times – or alternatively, felt two awful/anxious to even leave the house. So that’s fun. There’s a reason why I have meltdowns of a fairly impressive nature once every two or three weeks. Normalcy is gone. My normal is planning a route to work that takes me via several publicly accessible bathrooms first thing in the morning. My normal is constantly worrying that my colleagues could be saying things behind my back while I’m on my fifth bathroom trip of the morning. Looking at my arm and seeing a mottled bruise from an IV that looks like it should belong on the arm of a 80 year old, not a 22 year old. Avoiding going out. Crying in the bathroom. Being woken up by my angry colon at night, not being able to comfortably lie on my left side because too much pressure is put on the ulcerated area. Using up all my sick leave and a fair chunk of my holiday leave for colitis related absences. Not being able to plan trips/travel/anything because a) will I get there in one piece and b) even if I do, how am I going to hold up long term… because the treatment I’m on (that might not even work) is hardly likely to be covered by travel insurance, and each infusion costs more than I have saved right now.

I never wanted to be normal when I was younger. Non-conformist was a buzzword that I seriously subscribed to at fifteen. I’ve been alternative/off-beat/indie – I’m generally weird-ish and I love it – but for once in my life, why, why WHY can’t I just be normal, in this one way?

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.

things to do while stuck in the bathroom

Reading the backs of shampoo bottles can only get you so far when you’re on intimate terms with the bathroom. Here’s a handy list of ways to wile away the agonising hours (if you add up colitis bathroom time, it gets a little scary!) in the loo.

  • do your nails. Only applicable when you’re not in writhing pain.
  • put on moisturizer. Nothing like a bit of tearing up to help it soak in!
  • listen to music. Especially good if you’re worried about unseemly noises, just bring along a iPod dock and crank it. Although, let’s be honest, if you’re at the point where you’ve been diagnosed with an IBD, noises are probably the least of your concerns. But you can choose music to suit your pain/movement mood! O Fortuna is best reserved for special occasions.
  • wail in pain. Because sometimes it’s all you can really do.
  • sing. Not just for the shower anymore! Serenade your flatmates with your musical prowess!
  • cry.
  • read. A Kobo or Kindle is your best friend. Best thing is trashy teen novels that you secretly want to read, but don’t want the perceived shame of carrying around the book itself. Plus they are generally fairly straightforward when it comes to reading comprehension, so you’re unlikely to miss anything crucial is your eyes glaze over during particularly bad waves of pain.
  • internet. Whip out the old smartphone. Read up on the news, or check out a colitis/Crohn’s forum or support group. I’m a particular fan of IHaveUC.com and both the CrohnsDisease and IBD subreddits on everyone’s favourite Front Page of the Internet.
  • text people. I’m terrible at remembering to contact people, so the bathroom is sometimes my go-to for responsible daughter text messages to my mother.
  • ponder. Eg. when will the drugs work / should I just get surgery / should I just get surgery NOW by myself with a kitchen knife / was the cheesecake worth it
  • philosophise/theorise. If Archimedes could make scientific discoveries in the bath, why can’t you do it on the loo?
  • or just think about how delectable those painkillers are going to be when they start kicking in.

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.