So, I decided to have a play around with VIDEO. In here, there is much medication related rambling, self-introduction, diagnosis palaver… all of the things that you have quite possibly come to know and love from me and Wamblecropt already. Plus, it’s all in my oh-so-charming kiwi accent, which obviously doesn’t come across in my written posts. So, enjoy, and let me know if you’d like more video type posts!
I had my follow-up appointment with my surgeon yesterday.
It wasn’t great.
I was going into the appointment thinking everything’s going fine, I’m back at work, I’m healing up, the stoma’s looking mostly fine except for the hypergranulation around the outside. I’ll have ‘replumbing’ surgery ASAP, we’ll say a fond farewell to Buffy the Stoma and the rest of my colon and welcome the new, yet to be named j-pouch.
The best laid plans…
See, I had a Hartmann’s procedure (basically a colonic resection/partial colectomy) because my surgeon wanted to be sure that it wasn’t Crohn’s before yanking the whole thing out – and my inflammed section was limited to the sigmoid colon and rectum, basically, but it was just perpetually super bad in that area. I had an MRI a couple of weeks before the surgery, though, and was told that my small bowel was completely clear, and was therefore under the impression that yes, it was ‘just’ UC, but the plan to stick with the Hartmann’s for now remained.
Thing is, when they take out part of your intestines, they can look at it a whole lot more thoroughly than they can when it’s just a colonoscopy biopsy. And it turns out that the degree/depth on inflammation found ‘favours’ Crohn’s. The surgeon is getting a second histological opinion before anything too intensive is done, but basically, she doesn’t want to try reconnection until at least the new year, which would theoretically put paid to starting any new academic plans, since the postgrad diploma I want to do starts in February, and I need to allow fairly substantial recovery time.
So it looks as though I’ll be postponing any kind of surgery until the end of next year. Which means that me and Buffy are going to be hanging out together for a hell of a lot longer than planned. I am relieved, however, that they did go for the partial surgery, because my surgeon is pretty much now of the opinion that my inflammation goes so low that a j-pouch probably wouldn’t take – and preemptive total colectomy could have therefore meant permanent ostomy. The way it is currently, I would just get what remains of my colon reattached, and hopefully the still inflammed rectum would have settled down enough by then – with the help of maintenance drugs, something else I’d not really banked on. I’m currently completely off meds, apart from painkillers on occasion, but if the decision is made that it’s Crohn’s, I’ll be back onto azathioprine at least, if not getting back on inflixi or Humira. Hopefully something can manage maintenance, since I’m symptom-free at the moment… but I don’t exactly have the best track record for meds working.
So it’s really super fun in health-world for Briar right now – I hope that you’re all in a better place than me!
Originally posted on Raw Library in January this year.
It’s official – I have a love/hate relationship with prednisone.
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.
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.’
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…
…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!
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….
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.
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.
Briar’s diagnosis story – originally posted on Raw Library.
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.