marking time / health misadventures

It’s two years and a day since I had surgery. Unexpected, life-saving, emergency surgery. I was in incredible pain before it, and different kinds of incredible pain after it.

Before the operation, I was doubled over. Stabbing sensations, rolling walls of abdominal agony that would come and crest and fall just because I moved a fraction of an inch too far. I didn’t know what was wrong. I mean, on a grand scale, I did, because when you’ve got Crohn’s, it’s a fair bet that what’s ailing you somewhere in the digestive tract is Crohn’s related. But it was a different kind of pain to the pain I’d tolerated at varying levels over the years, that I’d cried out from, that I’d tamped down with multi-pill doses of tramadol days on end just to make it to work.

In hindsight, with that kind of painkiller regime, maybe I shouldn’t have been working at all.

But that time was so long ago, I’d been doing so well… and now this? Mystery abdo pain, lower left quadrant, fever? Not what I’d been led to believe was my excruciating ‘normal’.

And after… after was new, too. After my first operation, I’d felt grotty, but better. Planned surgery, even when it’s desperately needed, is a lot more gentle on the body. The surgeons know what to expect. They have time to plot things out, to talk you through everything. This time, I’d had a CT scan one day, and by the end of the next day, I’d had a multi-hour open abdominal surgery (no adorable little laparoscopic lines this time) to remove 15cm of large intestine and to remove a stoma (well, turn it into a surgical drain, first) and to reconnect my pipes, so to speak.

I’d been grotesquely unwell – but chronic illness warps your perception of pain. When your ‘normal’ state has arisen slowly, your illness beating your body down further and further, bit by bit, you adjust. It sucks, and every moment can be painful or difficult, but you adjust. The fact that I acknowledged that this pain was different, mysterious, possibly dangerous was a big change in my relationship with my pain. Every other time in the past when I cried out in the night, when I wept in bathrooms, when I clutched my stomach in agony – every time, I had explained it away as ‘this is just how it is, and tomorrow I’ll be a little better’.

But fever, that was different. And now I know better, too – the nurse reprimanded me (gently, kindly, softly) for not coming in sooner. I should have known better then. I remember Googling ‘what temperature means you need to go to the emergency room?’  – I didn’t really think about the fact that my maximum, my tolerance, was probably different from the average able-bodied person.

But I went, and thank god for that, right? Because intestinal perforations aren’t the kind of thing that spontaneously correct themselves. They’re the sort of things that cause sepsis and death.

But I won’t go into too much more detail, because I have a piece of writing about the surgical experience coming out in a journal sometime this year, and I don’t want to inadvertently steal skerricks of feelings from that.

Two years, though. Two years of ‘good’ health. Two years of healing and hiccups, and only one colonoscopy. One! How wild is that?!

Here’s to it continuing. I may never be normal – my exhaustion, my depression, my strange curly dietary needs, my phone alerts every couple of weeks to inject – but I manage to be a better version of myself now than I did before.

The Crohn’s Saga (to date)

When I talk to people, I speak freely. I open my mouth, and words come – thoroughly rehearsed, to a point. Every time I tell my mirror about my life, it’s a slightly different rendition of the same song. This is how it goes.

In high school, I was a swot. I went to a posh school, I was a high achiever, I was a musician. I didn’t even think to be rebellious until my last year, and my rebellion was not of the extreme variety. Most of my free periods were taken up with scholarship classes, but swot that I was (am, at heart) I had far too many, and three sessions overlapped.

So on occasion, I would tell art history I was going to French, French I was going to Spanish, and Spanish I was going to art history, and spend the fifty minutes feeling guilty while scribbling rambling poems in my binder instead. I got a second piercing in one lobe. That was my acting out. Continue reading The Crohn’s Saga (to date)

an adventure in the wonderful world of IBD vlogging!

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!

National Health Blog Post Month Part 1, 2 & 3

I just learned that it’s evidently ‘National Health Blog Post Month‘, according to wegohealth.com, anyway. Now, obviously I am not from the US, nor based there, but I figure that I’ll just treat it like NaNoWriMo – National though the name be, there’s no reason why it can’t stretch out internationally! Since it’s the third of November now, I have a little bit of catching up to do, but I think it’ll still manage to toddle along nicely. So, without further ado, I bring you days 1, 2 & 3 of the ‘challenge’, as it were.

Nov. 1
Favorite Fridays
Tell us what your favorite health apps are and how people can find them.

To be honest, the only health related app that I have ever used is GI Monitor, which was quite useful when I remembered to use it, but that’s a big case of when. I don’t typically have my phone on my person when I’m at work, let alone have it with me when I’m going to the bathroom, so accurately filling in my BMs wasn’t so easy. That being said, now that I’m ostomied up, that’s somewhat irrelevant – though that being said, I probably should be trying to regulate things a little more, but that’s another quest for another day.

I do, however, recommend that anyone with IBD has a few mindless apps on their phone for entertainment while in the bathroom and in possession of one’s phone – Candy Crush Sarga would be great, I imagine, although I personally only got hooked on it while I was in hospital post-surgery. That, or just do a lot of Redditing and Facebooking….

Nov. 2
Little Engine Post
Write 3 lines that start with “I think I can…”
Then write 3 lines that start with “I know I can…”

I think I can succeed in the publishing/writing world, if I continue to put my mind to it.
I think I can get healthier than I ever have been before (including fitness and weight) now that I am determined and making progress.
I think I can be amazing.

I know I can rediscover the healthy, intellectual creature that I was before all of this started tearing my life apart. My academic life hasn’t been destroyed, it has just taken a much needed break.I know I can be happy, regardless of whether or not this ends up being Crohn’s, and how long I end up having my ostomy.
I know I can continue to be a badass example to other IBDers, other people with chronic illnesses, or just other people in general. I may not be exactly where I thought I would be at this point in my life, but despite everything that has driven me down, I still have a degree, a decent job, a partner and a future plan that isn’t so dissimilar from what I thought I would have when I was a bright and shiny high school graduate with all the potential in the world.

Nov. 3
My Mascot!

Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?

Well, the use of the word battle cry reminds me of a nerdy connection the classicist in me has always liked – Ileum vs. Ilium. Now, my IBD/CD/UC/whatever the hell it decides to be may be colon-specific at this point in time, but a lot of IBDers have their disease in the ileum (the last section of the small intestine. Ilium (with two I’s) is one of the Latin names for the city of Troy. And since we’re constantly doing battle with our insides, much like the constant conflict between the Greeks and the Trojans over the decade or so of war over Helen… I do rather like the idea of being associated with an ancient figure of some description. Since Pallas Athene was the key patron goddess of Troy, let’s go with her. She’s badass, she is, among other things, the goddess of war, wisdom and strength, she frequently has an owl companion… let’s roll with this.

how to handle stomal surprises like a pro

Or, more accurately, how not to handle stomal surprises. Like a pro, or like any kind of sane person.

Forewarning that this post is a little more stoma/ostomy centric than others, and if you don’t have the experience of an ostomy – or at least IBD yourself, it may be a little much for you to handle.

Continue reading how to handle stomal surprises like a pro

staring down the barrel of re-diagnosis

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!