twisted insides – a treatment rant

One thing that drives me a little insane is the ‘any alternative to medication is better’ attitude that seems so prevalent amongst many IBD forums that I peruse from time to time. It seems that every time someone posts their story, there are a million replies about the Specific Carbohydrate Diet, and about probiotics, and yada yada yada. Sometimes, people even mention visiting homeopathy specialists. Homeopathy. I’m hoping that they are confusing naturopaths (which I suppose have their place, but we’ll get to that) with homeopathy, because seriously… there are actually still people that buy into that?

I just… what??

Okay. Breathe.

Anyway. There always seems to be a plethora of these folks out there, espousing their anti-medication views. They talk about doctors forcing medications on people. Not listening. Refusing to see reason. Claiming that diet has ‘cured’ their colitis.

NO NO NO.

Okay, maybe I’ve just been lucky when it’s come to doctors – and maybe they’ve just been lucky when it comes to natural ‘cures’. But you don’t cure IBD. Crohn’s and UC are chronic conditions for which there is no cure. You can go into remission, with the right circumstances/drugs/luck. But you don’t get cured. Unless you have UC and have your colon taken out. But, you know, that’s not exactly ideal.

Not to mention the doctor issue. The picture some of these people seem to paint of their health professionals is of money-grubbing, white-coat-wearing con-artists who refuse to listen to anyone but their sacred Hippocratic brethren. My experience has been far different. Both gastroenterologists that I deal with are lovely. They listen to me. They don’t push me into taking things that I’m not comfortable with – and when they think that something is going to be the best course of action, they explain why. They tell me details. I held out for quite some time before taking prednisone – but in the end, I agreed to do it. It was, ultimately, my only option. Because no amount of probiotic capsules or SCD-ing is going to fix me.

Sometimes, though, it’s hard not to feel ‘guilty’, almost. Guilty that I haven’t tried harder at these ‘natural’ approaches – though I can’t say dropping money on expensive supplements is that tempting, especially when most of my prescriptions are $5 a pop and infliximab is free – but then that rational part of my brain reminds me of the old adage – ‘you know what they call alternative medicine that works? MEDICINE.’ This obsession with the SCD is also frustrating – and one of the reasons why the CrohnsDisease subreddit is my favourite IBD place online, there are many realistic, severely diseased people who make sure that anyone extolling the benefits of the SCD are aware that it doesn’t work for everyone. It sure won’t work for me.

Trust me, I would rather ‘cure’ my illness with diet than with however many pills I’m currently taking every day. And I’d definitely prefer it to infusions every eight weeks. But it’s not the reality for those of us with severe disease. When you’re twenty two and being told that you might have to have surgery that could, if it doesn’t go quite according to plan, land you with a stoma for the rest of your life… don’t you think I’ve already run the gamut of options available to me? Not to mention the fact that the damn pills that I’m taking are causing a hell of a butterfly effect. Prednisone makes me more depressed. Which means I take anti-depressants. Which make me lethargic. Which means I’m upping my iron tablets, and having caffeine more often. Both of which make me feel unwell. Which mean I’m popping paracetamol and even tramadol when the going gets even more tough. That’s not exactly my ideal dietary plan for the day.

It’s late. I’m losing my train of thought.

But basically, I wish that people would trust their doctors, and/or trust that those of us who trust our doctors are doing so for a reason.

the peculiarities of ‘remission’

Remission. It’s a word I always see thrown around on IBD forums, along with flare. It wasn’t until the last six months or so that I even heard the word ‘flare’ used by any medical professionals I deal with… mostly because it was a foreign concept to me. The internet seemed to be full of IBDers who experiences ups and downs – and whilst I certainly had days that were worse than others, the fact that post-diagnosis (December 2010) I never had more than a couple of ‘good’ days meant that there just wasn’t any point talking about these supposed swings and roundabouts. I had active disease, and it wasn’t going anywhere.

I don’t know if I’d be labelled as being in remission yet, but it’s certainly the closest to it that I’ve ever been. My insides aren’t 100%, but that could be more of a lingering IBS type thing, rather than full-blown UC. The strange part is, it seems so hard to imagine the really bad days now. Time heals wounds, as they say, and when I think about my disease, I have to remind myself that actually, yes, it is very serious, and more to the point, I need to seriously remind myself that there are absolutely no guarantees that my current course of medication will continue working for a protracted period of time. A few months ago, I was convinced that I would be getting a colectomy some time in 2013. Succumbing to prednisone – and possibly the effects of infliximab, hard to say yet – has turned all of that on its head.

But, as I say, it’s not necessarily forever, and whilst I’m therefore less likely to be telling myself to mentally prepare for it, and trying to visualise what my stomach would look like with a stoma, trying to remind myself that I’m in a position where I’ll be cared for, loved and looked after regardless of whether or not I have a large intestine… I have to keep it in the back of my head. I can’t let myself stray into the potentially false sense of security that my medication is giving me, because whilst I’m currently down to 3/4 BM a day, and everything seems to be fairly healed inside (my inflammatory markers are looking good too, first time I’ve ever heard that!) all it takes is for something to go slightly off kilter, and I could be thrown into one of these flares, and if that happens – if infliximab and prednisone stop doing their thing – that does mean surgery, and that does scare me, despite what I may project.

For now, though, it does feel nice, being able to leave the house and not worrying about which route I decide to take, or whether or not I have enough energy to walk fast enough to save myself from potential intestinal trauma. The psychological side-effects are hopefully going to get under control (I’ll post more about that in a day or two). In a month and a half, the worst stress for the year at work will all have passed, my boyfriend will long since have returned from his travels. And, more to the point, I should have some idea of whether or not everything’s going to keep working for the next while.

So KBO, I suppose!

breaking point

WordPress, thou art my confession box, as it were, or one of many, for the internet’s good like that. But this is the place where I talk most frankly about mental health, and I’ve certainly come to the complete realisation today that there is no way that I can be on prednisone/in this current mental state without some kind of corresponding medication for my head. Three days back on my highest dose of prednisone, three days of on-and-off mental trauma. It really can’t be coincidence.

Spending half an hour lying on the bathroom floor, alternating between foetal position and sobbing and spread eagled, staring at the ceiling… that’s not the way evenings are supposed to go. I shouldn’t be telling myself ‘I don’t want to die’ over and over until I’m hysterical. I’m certainly not suicidal, it’s quite the opposite. I’m terrified of dying before I’ve proven myself. I’m terrified of something going wrong with my disease or my head or my medication and not being able to be all that I hypothetically know I can be, at least not when I’m in the throes of mental anguish.

I think I’m reacting far too much to this medication/situation for it just to be a psychosomatic thing. But regardless of what’s caused it, I need to get it to stop. As long as I can hold out the next couple of days, until I see my GP, it might all be okay.

And this was just one of those things that I needed to get out of my system. Much like so many things, but at least typing out feelings is actually able to be done. Getting rid of poisonous synapses and intestines… that’s what we’re working on.

on DRUGS (with PICTURES!)

It’s official – I have a love/hate relationship with prednisone.

Photo on 2013-01-27 at 15.15

I’ve been on it for nearly two months now, and it’s the only thing that’s had any kind of effect on my UC symptoms. But, as previously mentioned, I’ve been tapering it… and my insides have been starting to play up a bit again. So after a chat with Jacqui, the lovely IBD nurse at Middlemore – and after she consulted with the head of gastro, who’s one of the doctors on my case, as it were, I’m back up to my initial dose – that’s 20mg a day, which is actually a fairly small dose, still, but twice as much as I’ve been on for the past week.

And now that I’m on day two of taking it again, I’ve already had a freakout session. I had a few good ones soon after starting the pred, but after the first taper and then the second, I was feeling a little saner. But now – bam. It’s like I have to choose between intestinal and mental health – I can’t have both. I’m still at the stage where they can’t be sure whether or not my body and the infliximab are cooperating to make it work, so steroids are all that there is for now. In some ways, steroids are better than infliximab. Cheaper, for one thing. Pills, rather than infusions, which is a definite bonus.

But my mind is not okay with prednisone. Nor is my body, in other ways – I’m trying desperately to get healthier and fitter, and taking medication that can cause weight gain and puffy face and all that jazz is just making the mental breakdown all the worse. There’s no winning. Either I’m sick, and can’t do anything to make myself healthier in any way – or I’m ‘healthy’, colon-speaking, and I turn into an angry pufferfish.

It’s becoming very easy to just feel sorry for myself and melt into a sobbing mess. Lord knows it has happened before. I can yank myself out of the deepest pits of despair sometimes – doing the dishes while singing along to Avril Lavigne’s first album sort of helped, even if I did mostly just get angry at the kitchen. Frittering away time on Facebook and Reddit, even if it feels empty and pointless, it’s still better than lying facedown on the carpet, right?

But hey. Maybe it’s time to introduce you to ALL my drug friends. There’s more to life than prednisone, after all – even if none of it seems to do much, into my body it goes!

Therefore, let me present

BRIAR’S DAILY DRUG COCKTAIL.

look at how much fun we have together!

The day starts with the aforementioned prednisone. Four little white tablets, knocked back at once, because I’m cool like that. Along with my first four Asacol of the day. Asacol is mesalazine – which, according to Wikipedia is ‘a bowel-specific drug that acts locally in the gut and has its predominant actions there, thereby having few systemic side effects.’

more like asaCOOL, amirite?

So there you go. I’ve been on Asacol for about two years now, ever since I said to the doctor that the relationship between myself and the Pentasa enemas he prescribed was not going anywhere anytime fast. Nor were my symptoms. They didn’t really go anywhere with the Asacol either, but, as I’ve said before, and I’ll say again (likewise my doctors), if I wasn’t taking it, who knows how much worse I might be? The prednisone needs to be with food, and the Asacol is twice a day, so they get scarfed down with whatever I can stomach for breakfast.

Then, some mornings – though mercifully not all mornings at the moment, I pop my bff, TRAMADOL. Some mornings I’ll attempt paracetamol first… I do have a box as tall as my head of the stuff, after all…

SO MANY DRUGS

…but realistically, the kind of pain that paracetamol can handle is just my daily business, so if I feel like I need pain relief, it just doesn’t cut it. So that’s where my tramz come in to play!

tramadolololololololol...

Seriously. Until prednisone started doing stuff, getting the tramadol prescription was the only thing that ever seriously helped me out pain-wise. It’s courtesy of these bad boys here that I’ve managed to get through the past 5-6 months without any pre-arranged sick days at work. AMAZEBALLS.

Then, the day progresses. If I remember, I’ll take a multivitamin and a Executive Stress B vitamin with my lunch, especially since I’m still working on managing to tolerate most fruits and vegetables. Then work finally finishes, we all cheer, and I come home and collapse for the evening. But before rolling into the sweet embrace of sleep, there’s….

please sir, may i have some more?

MORE ASACOL! FOUR MORE! FOUR FOR YOU GLEN COCO, YOU GO GLEN COCO.

And a tablet and a half of azathioprine, also known as Imuran or Imuprine. I pre-cut them and keep a bunch in a gladware container. Cunning! Azathioprine, again, quoting everyone’s favourite research site, Wikipedia, is ‘an immunosuppressive drug used in organ transplantation and autoimmune diseases and belongs to the chemical class of purine analogues. Synthesized originally as a cancer drug and a pro-drug for mercaptopurine in 1957, it has been widely used as a immunosuppressant for more than 50 years.’ GOODNESS ME. The more you know.

om nom nom

And that’s the lot. So, at the moment, a relatively pain-free day will consist of thirteen and a half tummy-related tablets, plus painkillers if necessary. Gosh.

Tune in next week, for our latest installment of Tales of Ward 32 – Infliximab Infusion Live-Blogging! What a thrilling time to be alive.

upcoming pieces

So, I’m not sure how many people reading this on a regular basis have investigated this blog because of its IBD/health connections, but as you may or may not be aware, in addition to my on-going 365 pieces project, I am trying to work on getting together a greater number of pieces on gastrointestinal (and mental, which I have delved into recently, too) health. But on the off chance that any of you have a vested interest in any subsections of said health issues, I thought I’d put it to you, my hypothetical readers, to have a say. Current areas I’ll probably look into in the near future are…

  • experiences on the ward
  • NZ healthcare and why it’s awesome
  • the wonders of prednisone
  • the wonders of tramadol
  • the wonders of fentanyl/whatever other drugs they give me before ‘scoping
  • the difference medication makes
  • a thorough investigation into/explanation of the differences between IBD and IBS
  • IBD and ‘first world problems’ (this will require more elaboration at some stage, I guess)
  • gluten? dairy?  & other irksome questions from well-meaning people
  • why I should get a j-pouch/why I should get an ostomy/why I should avoid surgery at whatever cost
  • more mental health/confessions of a depressive IBDer
  • what the hell can you eat, then Briar?

That’s the list I scribbled a couple of days ago, anyway. So there are a fair few different areas to jump on into – but if anyone thinks any sound particularly juicy, then do let me know, because writing for the Internet generally involves appealing the masses, to some extent!

constant vigilance

I had a moment of terror last night – woken up at 2:30 by my insides, for the first time in a while. Pain, not the worst I’ve ever had, certainly, but decidedly unpleasant painNaturally, I went to the bathroom. Spent 20 minutes alternating between almost-acceptable and agony, and I’m not quite sure whether the tears were from the pain, or the frustration, or a combination. My money’s on the latter.

But with tramadol, the pain subsided. I managed to sleep, fitfully, mind you, but some sleep was had. There was no blood – both good and bad, I suppose, because blood at least is an indicator that something is definitely not right. But this was just pain, urgency and whatnot. So I’m not sure what’s up with my insides right now, but come actual daytime morning, I was okay. Back to my current fairly remission-y self. But I’m worried it could happen again, and realistically, there’s nothing I can do to avoid it nor know if it’s coming on. All I can do is keep an eye on what’s happening, see if there are any tip-off factors for moments like this.

On Tuesday, I’ll be taking my prednisone dose down again. I’m more nervous than excited.  If I stay ‘okay’, then that’s great. But if symptoms start recurring… worrying that steroids are the only thing that give me some kind of relief from the grim reality of severe colitis… that’s not such a pleasant thought. So for now, I will enter into this next phase with some trepidation, and we’ll just have to see what happens. Since I’ve had these past few ‘good’ weeks, I’ve obviously spent less time dwelling on the possibility of surgery and all that jazz. But I’m forcing myself to be realistic again, because when it comes to chronic illnesses, few things last forever.

But in the meantime, while I am doing pretty well, I’d better get back on top of Sunday’s necessary chores. Tidying and baking (necessary? yes!) and writing. O, the one day weekend…

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.

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.

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.