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.

IBD vs IBS – let’s talk it out

It’s a serious misconception out there among some people that the similarity in acronyms and the word ‘bowel’ across both must mean that IBD and IBS are fairly similar.

It drives me crazy.

Irritable bowel syndrome can be an unpleasant thing to experience for some people. I’d wager in some cases it can even be quite nasty. But when people flippantly refer to IBD as ‘irritable bowel disease’, rather than ‘inflammatory bowel disease’, it does nobody any favours. It furthers the notion that somehow IBS is comparable to Crohn’s and ulcerative colitis. That if people with IBD could just manage their stress and eat some more fibre, all of their problems would go away. I can’t tell you how many times people have asked me if I’ve tried adapting my diet. If I’ve tried cutting out gluten.

My internal monologue at these moments tends to run along the lines of ‘I’ve just told you I’m having surgery to remove part of my intestines, don’t you think I’d have maybe given diet a shot before getting to this point?’ Externally, of course, I tend to smile tightly and nod.

Yes. I’ve bloody tried cutting out gluten.

Let’s clear it up. Once and for all. IBS is irritable bowel syndrome. According to some figures, it affects 10-20% of all adults. By contrast, IBD, or inflammatory bowel disease (including both Crohn’s and UC) affects only 0.001- 0.003% of the adult population. But it’s not just about being some kind of exclusive club that talks way more about bathroom habits than the average medical gathering. Inflammatory is the key word. People with IBS don’t have inflammation of the intestines (or any other part of the GI tract, for that matter). They may have some abdominal pain, some bathroom related inconvenience, but they don’t have structural changes in the layers of their intestinal wall. They don’t bleed, seep or otherwise ooze. They don’t run the risk of absesses or fistulae forming between bowel and skin – or bowel and other non-digestive organs.

Again with the according to some figures, 70% of IBS patients either don’t need to or choose not to seek healthcare. Virtually all people with IBD will have ongoing healthcare provider contact, given that virtually all people with IBD need some serious meds at some point in their journey, if not constantly. IBS doesn’t need surgery; IBD often will – you’ve heard enough about my ostomy by now, and it sure didn’t just appear one day. Surgery and symptoms them selves can have significant enough complications that it’s not unheard of for IBD patients to die of related causes. Not common, but it is a risk. IBS – not so much.

We IBDers also run the risk of symptoms beyond the gut. Lucky us, eh? Complications can arise in the skin, joints, even the eyes. IBD is autoimmune, and therefore can have some similarities in symptoms with the likes of rheumatoid arthritis. We even share some of our more serious meds with them. When you’re 23 and your knee is playing up, that’s a bit of a health-related wake-up call. We also can run fevers and become severely anaemic and/or malnourished. Not to mention, all of the mentioned symptoms are just the disease-related ones – not even the extra fun that can be in store for those of us on certain medications.

Don’t get me wrong. I know some people who have some thoroughly unpleasant cases of IBS to deal with. It sucks. I wouldn’t wish ill digestive health on anyone. But to equate the two is to be at best uninformed or at worst, downright inconsiderate. It’s like equating a sprained ankle with a compound fracture. One, you can walk off. The other requires a hell of a lot more attention. Unlike an ankle injury of that nature, though, both IBS and IBD are chronic, and that sucks. I’m happy to share in the pain of IBS sufferers – but if they start to try to tell me they know how I feel, that’s where the civility will end.

So if you’re reading this and knew the basics already, arm yourself with the details for your next encounter. If you’ve just been enlightened, educate others if the topic should ever arise. If you have IBS, know that we know it’s horrible to have a busted gut. But know too that you are damn lucky to have an inflammation-free GI tract, for so many reasons.

(figures primarily from badgut.org, the Canadian Society for Intestinal Research. It was the first website that had decent details on it, but other websites like CCFA etc have similar information)

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!

THINGS TO DO WHILE STUCK IN THE BATHROOM.

Originally posted on Raw Library

Reading the backs of shampoo bottles can only get you so far when you’re on intimate terms with the bathroom. Here’s a handy list of ways to wile away the agonising hours (if you add up colitis bathroom time, it gets a little scary!) in the loo.

  • do your nails. Only applicable when you’re not in writhing pain.
  • put on moisturizer. Nothing like a bit of tearing up to help it soak in!
  • listen to music. Especially good if you’re worried about unseemly noises, just bring along a iPod dock and crank it. Although, let’s be honest, if you’re at the point where you’ve been diagnosed with an IBD, noises are probably the least of your concerns. But you can choose music to suit your pain/movement mood! O Fortuna is best reserved for special occasions.
  • wail in pain. Because sometimes it’s all you can really do.
  • sing. Not just for the shower anymore! Serenade your flatmates with your musical prowess!
  • cry.
  • read. A Kobo or Kindle is your best friend. Best thing is trashy teen novels that you secretly want to read, but don’t want the perceived shame of carrying around the book itself. Plus they are generally fairly straightforward when it comes to reading comprehension, so you’re unlikely to miss anything crucial is your eyes glaze over during particularly bad waves of pain.
  • internet. Whip out the old smartphone. Read up on the news, or check out a colitis/Crohn’s forum or support group. I’m a particular fan of IHaveUC.com and both the CrohnsDisease and IBD subreddits on everyone’s favourite Front Page of the Internet.
  • text people. I’m terrible at remembering to contact people, so the bathroom is sometimes my go-to for responsible daughter text messages to my mother.
  • ponder. Eg. when will the drugs work / should I just get surgery / should I just get surgery NOW by myself with a kitchen knife / was the cheesecake worth it
  • philosophise/theorise. If Archimedes could make scientific discoveries in the bath, why can’t you do it on the loo?
  • or just think about how delectable those painkillers are going to be when they start kicking in.

14 WAYS TO HAVE A RAD TIME, EVEN IF YOUR SIGNIFICANT OTHER IS THE PORCELAIN THRONE.

Originally posted on Raw Library

[Section 1 – at home! since, you know, if you’re sick, home is often where the heart, and the head, and the whole body are]

1. Bubble bath. Perks include – it can calm you down (and stress can be a factor for some people with bowel problems), you can douse yourself in all kinds of sparkly delicious smells to disguise any (probably imaginary, but no less disturbing!) lingering odours that you may be inflicted with, AND, most conveniently, more often than not, it’s the same room as your toilet. SUPER WIN.

2. Bring your world to the bathroom. I’m talking iPod docks, books, laptops/tablets/phones, you name it, it will enhance the bathroom experience.

3. Dance party. If you’re up to it, shaking your groove thing can be very cathartic.

4. Cooking something fabulous. Since nobody knows your own specific colon/digestive system idiosyncrasies better than you do, cook some amazing feast that caters to your specific dietary requirements. Alternatively, junk food that fits your needs is good too. Sometimes, eating ‘healthy’ can be hard for a low-residue dieting IBDer, but hey, if you want an excuse to gorge on something ‘bad’ under the guise of ‘it’s the only thing I can digest except poached chicken!’ I say MORE POWER TO YOU.

5. Redecorating. Having a room/home that you actually like to be in seriously enhances the experience of being at home, and if you’re stuck at home because your colon is telling you that that’s the only thing doing right now, then between voyages to the loo, contemplate how your room could be more badass, and make it happen.

6. Movie/TV show marathoning. Before I ‘knew’ I was sick – but was symptomatic, and depressed, and therefore basically never leaving the house if I could help it, I got through a hell of a lot of Gilmore Girls and Buffy. My life is better for having those shows in my life. Good can come of being a brain-addled, pipe-twisted couch potato!

7. WRITE! Case in point. To be honest, though, when I was at my worst, I was also not really in the right mindset for writing. These last few months have played host to my largest writing output, both blogging and creative writing, in year. But capture what moments you can. You never know how good it might be to look back and see how far you’ve come.

[section 2 – AWAY from home! scary! but possible!]

8. Go to the beach. So, this may sound wacky on several levels, especially for those of you reading this from wintery northern hemisphere climes, but with a little forethought, beach-tripping can be totally doable, even if you’re not at your best. I think the trick is to find a moderately-frequented beach – one that’s popular enough to have more than one public toilet, ideally one that’s actually occasionally cleaned, but not so popular as to mean you’re going to be queuing for ages and risking major bikini-bottom trauma. Let’s be honest – it’s a possibility. Swimming’s not even essential, nor is lying in the sun – just find a shady tree (pohutukawas are best for it, if you’re lucky enough to live in my part of the world) and listen to the waves. Build a sand castle – hell, build a sand-toilet-idol. LIVE THE SUMMER DREAM.

9. Catch a ferry somewhere. Sticking to the seaside theme, if you live somewhere with a harbour, hop on a ferry – they have bathrooms! – and go somewhere new. Or somewhere old. Or anywhere, really. Enjoy being out on the ocean. It’s a damn fine thing.

10. Movies. Your friends will love you for being the one who ‘takes one for the team’ when you offer to take the seat at the end of the row. Little do they know (or maybe they do) it’s just smart planning. Keep your ticket on you. Avoid popcorn, unless a) your intestines don’t have an aversion to it, in which case yay! lucky you or b) you know you’ll have a delayed reaction and that buttery goodness is worth the repercussions. I feel ya. I’ve been there. It’s bittersweet.

11. Art galleries/museums. Major galleries and museums will generally be pretty well kitted out for public facilities – and what’s more, often they’ll give you a handy dandy map when you go in, WHICH SHOWS YOU WHERE THEY ALL ARE. It’s like they’re made for us. Just make sure you check out the map before you go wandering into any old wings that may not be quite so well equipped, okay? Nothing like hobble-running through a voclano-exhibit to try to catch the train on time.

12. Visit your parents/grandparents/siblings/close-and-understanding friends. Especially the first two – always good to keep those that brought you into being happy. A way to leave the house and still have unfettered access to a bathroom? It’s possible! Plus depending on the parent/grandparent/sibling/close-and-understanding friend in question, who knows what kind of delicious baked goods they might unleash upon you?

13. Gigs. I’ll admit, I do still get a little anxious going out to concerts, and, realistically, going to the symphony may not be ideal for the colonly-challenged, but a gig at a regular ol’ bar or rock club? Totally doable. Stay away from major crush areas, towards the side or the back – or even a mezzanine, if there is one – and you’ll benefit in more health and safety related ways than just having an easy UC/Crohn’s escape route. I’d recommend scoping out where the bathrooms are beforehand, though, and maybe steer clear of venues you know have poor lavatory hygiene. Get wrapped up and absorbed in the music, and it’s amazing how, even for a couple of hours, intestines can miraculously settle down.

14. Bush walks. I guess you overseas folks would be more likely to call it hiking, but here, bush walking suits me just fine. This isn’t exactly recommended if you’re in the middle of a mega-flare, but if you’re in a bit of an in-between place like I am, it’s not impossible. No big quests, mind you, but take a drive out to somewhere gorgeous – where the drive is part of the fun – with a small loop track. If you’re in Auckland, check out the Hunua Falls – you can loop down to the falls and back (and by back, I mean the carpark with a Department of Conservation administered toilet block, chur, guys!) in ten minutes, if you need to. You can venture further up other tracks if you want, but even just that little track take you through old forests and up to the beautiful waterfall and the big waterhole thing it falls into. Glorious.