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 … Continue reading staring down the barrel of re-diagnosis

daily drug cocktails, the UC way

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 … Continue reading daily drug cocktails, the UC way

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 … Continue reading THINGS TO DO WHILE STUCK IN THE BATHROOM.

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

briar’s UC diagnosis story

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 … Continue reading briar’s UC diagnosis story

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 … Continue reading the official countdown begins

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

the peculiarities of ‘remission’

Remission. It’s a word I always see thrown around on IBD forums, along with flare. It wasn’t until the last six months or so that I even heard the word ‘flare’ used by any medical professionals I deal with… mostly because it was a foreign concept to me. The internet seemed to be full of IBDers who experiences ups and downs – and whilst I certainly had days that were worse than others, the fact that post-diagnosis (December 2010) I never had more than a couple of ‘good’ days meant that there just wasn’t any point talking about these supposed swings and … Continue reading the peculiarities of ‘remission’

on DRUGS (with PICTURES!)

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 … Continue reading on DRUGS (with PICTURES!)