NEWS!

Hello, fine folks who read these pages! I’ve been doing some tinkering over the last few days, as a result of thinking about what directions I want this blog to go in – but at the same time, how I want to pursue my online presence overall. So… I’ve created a new blog/website explicitly for the health related topics that I’ve blogged about so very much here – IBD and its affiliated psychological issues, like depression and anxiety. It’s (hopefully) going to become a place for more people than just me to share their stories – but to make that happen, I need to get people reading and submitting. So, if you are at all interested in following my intestinal journeys, come and join the party over at wamblecropt (the name is explained on the blog!). And if you’re someone with ulcerative colitis or Crohn’s disease yourself – or if you know someone who is – please get yourself or your someone joining in the discussion, because awareness and outreach needs voices to spread.

So that’s the new website – but don’t despair, I’m still going to be keeping on keeping on here. The 365 pieces project obviously has a ways to go yet – and I’m also planning on upping my reviewing came (if you haven’t already seen it, check out the review of Eleanor Catton’s The Luminaries that I posted earlier today. And if you’ve got any recommendations for things that you think would be worth my checking out and reviewing, let me know!

the official countdown begins

Here are some numbers – I’m 23 years old. I’ve been diagnosed with ulcerative colitis for a smidge over two and a half years. I’ve had IBD-type symptoms for 4-5 years. And in 18 days, I’ll be getting a partial colectomy.

Yes folks, I’m booked for surgery. September 11th, of all days. I will be heading out to the Manukau Surgery Centre, and I’ll be there for at least 3-4 days. Approximately a third of my large bowel will be removed – though they won’t know for sure until they’re going in, of course – my last scope was in June, so it’s possibly that things are looking slightly different, but no matter what, that left side is on its way out.

I’ll wake up with a temporary ostomy, in all likelihood – there’s a lot more risk of things not healing up properly if everything is reconnected straight away. I’ve therefore been eyeing up various sassy wraps and high waisted underwear (some of the ones that Awestomy have are particularly boss, and I’d kind of like a pair regardless of whether or not I had a bag to keep safe!) – but I don’t want to commit in case my stoma winds up being particularly low or high, meaning certain garments would be more or less appropriate, depending.

I’ll also be off work for about a month. If I’d been heading for a total colectomy, it would have been more like six weeks, but a month is what I’ve been advised for this partial colectomy – thank jebus, because I’ve got approximately 18 days of holiday pay accrued (and a day and half of sick leave left), so I should just make it through without having to worry about arranging a temporary sickness benefit, which would only just cover my rent and weekly household expenses, plus $5, so that’s not exactly ideal).

I’d be lying if I said I wasn’t nervous – now that I have an actual set-in-stone date (and it’s only two and a half weeks away!), it’s all even more real. I’ve had the initial consultation (which I’ve probably mentioned already), I’ve had the preemptive MRI (to check in on my small intestine – jury’s still out on that one, to the best of my knowledge, so I’m still hovering in the ‘could-it-maybe-be-Crohn’s?’ camp), and next I have the actual final pre-surgery appointment on the sixth. And the the big show the next week. I know there are risks involved, obviously. That’s the scary part. But most of all, I am excited that there is finally progress being made. Something is getting done. It’s not the final solution – there’s another operation or two before we even think about being at that point, but it’s something – and the idea that I could wake up with most of my pain and problems gone… that’s pretty fabulous.

I’ll definitely be keeping y’all posted as things progress.

Eeek.

Love and guts,

Briar

things that are scary…

…having a colorectal surgeon tell you she does actually wonder whether it could be Crohn’s, not ulcerative colitis, because of the area of involvement in the lower colon.

It’s more of a ‘we need to be sure before final surgical decisions are made’ type situation, because my case is evidently a bit peculiar. People heading in for colectomies don’t tend to be left-sided folks, like I am – so it’s unusual territory for the surgeon, apparently. The current plan is to take out most of the diseased section, rather than the whole-colon-except-a-rectal-stump as would be the usual course of action for a UC colectomy. Since for me, taking everything but the stump would mean taking a whole heap of currently healthy bowel, and leaving like a third or even half of the diseased bowel behind. Which just doesn’t make sense.

That could be happening as soon as September. Sometime in the next few weeks, I’m going to get and MRI so they can take a peek at my small intestine, get a bit of clarification on the UC/CD situation. It’ll be a blast trying to make that happen in parallel with one of the busiest times of the year at work, but we shall see.

That first surgery would involve about three days recovery at the hospital, and then about a month recovery at home before being in back-to-work mode, apparently. Which is in all likelihood an impossible amount of time to take off, especially given that it’s just the first of at least two, possibly more, surgeries. So I’m going to have a chat to the higher powers at work, and see what we’ll do. And in the meantime, do the necessary investigation into temporary sickness benefits and whatnot, so that I can, you know live.

Sometimes it does just feel like this whole thing is getting far too drawn out, like I’m going to end up spending half my twenties just trying to get stable or moderately healthy in order to go on with life. There are so many things that I should have achieved or done or seen by this stage, and there’s just been no way to make it happen. I’m 23. I’m sick. I’m looking at the prospect of having not one but two stomas over the course of my operations – one colostomy on my left side initially, and later down the line, an ileostomy on my right side, depending on what the consensus is after the first op. And who knows – if stuff goes wrong, either of those could wind up being permanent.

At 23.

That’s scary too.

We interrupt your regular writing programme for an IBD-flavoured update!

Ew. I don’t even want to think about what something IBD-flavoured would taste like. 

Yeah, let’s not go there.

Instead, let’s go onwards from shitty titles (HA!) and examine the matter at hand. It’s been a while since I made a health related post, so here’s an update. Maybe this radio silence led you to believe that all was well in the Raw Library intestinal tract? Sort of. Not really. I wish.

See, as I’ve mentioned before, I’m on an uber-cocktail of meds for my merciless colon’s deathwish. No prednisone anymore, thank god, and I don’t think I can handle that jandal again any time soon. As much as being super sick with colitis symptoms SUCKS, at least I understand exactly what’s going on, and the only mental involvement is frustration and pain synapses firing. On pred, sometimes you don’t know which freaking way is up. 20mg, and my brain loses its ability to think rationally. Meltdowns, as mentioned here. The weight piles on, the face blows up – I’ve only just gotten to the point where I think I’ve lost the moonface swelling. But no prednisone doesn’t mean anything else has eased off, oh no… I’m still popping the mesalazine and azathioprine like a champ, and going in like a good little sick girl to get my infusions every eight weeks. And I’m still not better.

At this point in time, I’m kind of already scraping the bottom of the barrel. I know that I’m not being quite as careful with my eating as I could be, in terms of avoiding trigger foods, but at the same time, on days when I do avoid the naughty things, and when I manage to soldier on without coffee, I still have aches. I still don’t feel right. I hate hate hate it.

At this point, my bathroom trips are still probably already greater in number than they would likely be if I had a j-pouch. So it’s hard to find a reason why I shouldn’t just tell me GI team that I want out, when I’m all out of meds that I can try (I know some UC patients have success with Humira, but it’s not available for colitis patients in NZ, only CD/RA/AS ones). If they said to me tomorrow, ‘Briar, we can book you in for surgery, what say you?’… I think I’d say yes. It’s more than a year since I started coming to terms with the fact that it was a real possibility. 

So that’s where I’m at. I’ll be back with more details in a few weeks, once I’ve had my next infusion and next GI appointment. Who knows where I’ll be at then…

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!