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.

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.

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…

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.