i’m properly back home now, after one night at my mum’s, since she’s closer to the clinic for follow up appointments, such as i had this morning, and with several more to come. yay! my energy and concentration levels are still a little lacking, so it may be a little while before i catch up on a whole week’s worth of poems, but hopefully i’ll get there.
everything’s healing nicely, according to my nurses, and i decided last night that, in the grand tradition of naming body parts (you know some people do it), my temporary stoma is called buffy.
because it’s kinda badass (can i get an amen up in here for modern medicine saving lives?)
yes you can.
and also it could probably scare vampires away.
i’m still getting to know the intricacies of the post-subtotal-colectomy (technically a hartmann’s procedure) world, but i’ll get there. considering how many IVs i had in (three total, plus one arterial line), i only have one substantial bruise (aside from the ones on my abdomen, of course). everything was done laparoscopically , which is great, in terms of healing time, though it means my scars will be much less impressive than if it had ended up having to be an open surgery. coming off anaesthetics was crazy – i’d never been under general anaesthesia before) – everything was so hazy and sleepy and strange, and i never realised how much i’d appreciate an extra IV just in case anti-emetics needed to be injected. the pain pump was great – although since i was doing pretty well they initially took it away on the second post-surgery day, which didn’t end so well (puking, crying in pain, the whole she-bang). i was understandably nervous the second time they posited taking it away, but my use was way down from previous days, and it all went well in the end.
i even took a surgo-selfie the night before, while dealing with the grim delight of bowel prep.
the nurses/surgeon/registrars/anaesthesiologists/etc were all brilliant and helpful and informative and all the things that you want medical professionals to be. the food was actually pretty decent, when i was up to eating, despite the fact that i was limited to the low-fibre menu. the hospital itself is actually a surgery specific centre, so there’s no emergency department or anything other than people on the wards and theatres for the operations, and it’s all pretty flash, almost more of a fancy private hospital feel. i had my own room, there was carpet in the corridors, i had a view of rooftops and the hunua ranges behind. pretty sweet.
i accidentally stained several of their HOSPITAL PROPERTY pillowcases and gowns pinkish. even though it’s weeks since i dyed my hair.
i also learned, over the course of coming off anaesthesia and dealing with oral morphine what colour straight bile is! that was educational.
(for the record, in my case at least, it’s a dark forest green. not unlike a pair of cords that i wear all the time. guess they’re going out of circulation for a while).
i also managed to read three books over the course of my hospital stay – bossypants, by tina fey, paper towns, by john green & city of bones by cassandra clare (i know, i know. but i work in the book industry, remember. gotta keep on top of what’s in vogue) – along with completing exactly one sudoku puzzle and playing quite a bit of candy crush saga (which i only just started playing on my second to last day, and i do kind of understand the collective obsession).
i can’t think of anything much to say. i’m mostly pretty good with the pain and whatnot, at least while the tramadol’s in my system and i’m lying prone. sitting up is possible for limited periods, as is walking around, but both kinda suck after a while. and the process of moving between sitting/lying/standing is pretty awful.
but everything’s getting there.
now, buffy and i are going to have a rest and watch some gilmore girls. hopefully some proper writings will occur tonight.
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.
PSA for fellow IBD types – especially those from Auckland – I’m running the Facebook (and possibly other social media) for Crohn’s & Colitis Auckland, and it’s looking pretty sad. I don’t have the budget for advertising or anything (although I may do some flyering around campus and suchlike) – so I’m currently dependent on word of mouth, basically. So if you have Crohn’s & Colitis and are from Auckland, or are thinking about coming to Auckland, or just want a cool place to sound off on IBD related matters with yours truly as the spiffy moderator, then please come and join us at facebook.com/CrohnsColitisAKL 🙂
…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.
always have an interesting pair of socks sticking out from your hospital gown.
scope went well enough, results were as expected – thank GOD – if the camera had showed that things were looking great, then i would have flipped out a bit, as i don’t want to be told ‘nah, we ain’t taking that out, it’s FINE’.
so now i’m going to be off to chat to surgeons next friday, and hopefully we’ll have a bit more solid info by then. hurrah!
Good morning, my pretties! Time for a brief intestinal update, because that’s what’s on my mind now. I’m on the final stretch before a colonoscopy today – down to no food, no fluids, absolutely nil by mouth (although I did brush my teeth – REBEL). I took a long luxurious shower to try to avoid total bodily dehydration… my veins are bad at the worst of times, and it’s pretty grim when the nurses have to give up on you and pass you on to the busy doctors to stab you properly.
This is, for those interested, my third full colonoscopy. In addition to these, I’ve had… six (I think?) flexible sigmoidoscopies, which don’t require the drinking of nasty evil potions, but do require the eternal thrill of nurse-administered enemas prior to the exam. Fun.
The worst part is over, though (although the waiting waiting waiting at the hospital does tend to grind one’s gears a tad) – the actual procedure is relatively easy, compared to the prep, especially once the damned lure is in, and they load you up with fentanyl and/or whatever other fancy sedatives they’ve got in the mix. That ain’t so bad.
Sooooo I will probably post something slightly sedative-induced at a later point today, which hopefully will include pictures of the oh-so-fun experience.
and the blood
and it goes
but it’s always back
and the pain
how one deludes oneself
into rationalizing it
until it returns
and it twists between
and connective tissue
and the prisons
of different sorts
and the mind
and the belly
and the fact
that you can’t
sever the connection
no epidural to be given
as in childbirth
no window of hours
or of days
before it will be gone
women will scoff
yet i would trade them
with absolutely certainty
i will take your pain
and the knowledge of
a squalling prize
the knowledge that
it will be done soon
i can say no such thing
while demons pluck
at my abdomen
eking out some kind of
So, when I googled purple ribbon this morning, it came up with a lot of stuff. Turns out, a lot of organisations are into purple as their colour of choice. Who can blame them? Purple’s grand. But today, purple belongs to US. Because, dear readers, May 19th (remember, I live in New Zealand, and we live in the future here) is World IBD Day, and therefore I thought it only appropriate to post a reminder/educational post about the ‘wonderful’ world of inflammatory bowel disease. Some of this may be stuff that I’ve mentioned before, but it’s all important, and all worth learning about. Everyone knows that cancer is bad, everyone knows that strokes and heart attacks and all of these (admittedly awful, don’t get me wrong!) things… but ulcerative colitis and Crohn’s disease are often relatively unknown. So I’m here, as I frequently am, to educate, and remind you of this particular facet of health (or lack thereof) that can be so debilitating. In the words of Janis Ian (from Mean Girls) – it’s a life ruiner. It ruins people’s lives.
I could rattle off a bunch of facts from Wikipedia and other sources, but that seems a little pointless. You can look that up yourselves. But the ultimate thing is, as with most chronic diseases, there is no cure. You can go into remission. You can go into remission for years, decades even. Or, you can not go into remission. You can toss back myriad different drugs and treatments, and still find yourself a decidedly sick individual. You inevitably put up with comments from laypeople about diets, and avoiding this and that, and ‘oh, that’s when you can’t have gluten?’. Not really, no.
If you don’t suffer from IBD, you cannot begin to understand how infuriating this all is. As I know I’ve said before, if I could nip it in the bud by avoiding bread and the like, don’t you think I would? Trust me, I’ve tried. Sure, I avoid certain foods, because they make me feel even worse, but it’s not as if by cutting them out I somehow heal myself. That just ain’t the way it works. My go-to ‘oh god, my insides’ diet involves cutting out fruit, vegetables, anything super greasy, anything wholemeal or legumey, all nuts and seeds, dairy as much as possible, and probably more that I can’t recall off-hand. Sounds like the opposite of a diet you’d subscribe to to get healthy, right? Exactly. It’s not to make me healthy, it’s just to avoid additional pain caused by too much fibre, too much milk protein and too much fructose. It sucks, especially when you’re still trying to work off weight gained in your last course of prednisone. But it’s the way it is. Tell me to avoid gluten again, I will slap your pretty face with my slice of white bread.
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…