I was going through my old Tumblr to find my go-to chocolate cake recipe, and stumbled upon this… my first ever IBD-related blog post, I suspect. 25 May 2011. I thought I’d post it here for posterity.
Those were the days… incredible pain on the daily, uncontrollable urgency, no painkillers, incapable of properly attending lectures. But also, relatively simple meds with less impact on my total system. No surgery, no steroids, no biologics. Not even my full-blown diagnosis yet. Anyway, without further ado, here’s 20-year-old Briar’s words about IBD:
Last December, after various fun filled tests, I was diagnosed with ulcerative colitis. Let me tell you, it’s as fun as it sounds. My first month of medication SUCKED (I won’t go into details of exactly how it sucked, but suffice it to say that colitis = lower digestive tract and doctors like to go for topical application over pill-consumption if they can) – then I got switched onto pills (after informing my gastroenterologist that there was no way I could make it work). 3 in the morning, 3 at night. I was super good at first (just like I was with my iron supplements – more on them later! more fun!) Plus another sometimes-use steroid based foam product. And they seemed to work, somewhat. For a while. And then they didn’t. And still haven’t gotten better.
So basically, most days I’m extremely lucky if the abdominal pain doesn’t register on my brain-y pain-y scanner. It’s almost always worst in the mornings, and sometimes delightfully bad at night, but no matter what, I’m very much stripped of normalcy in behaviours with regard to long periods of time away from possible bathroom stops and stuff. I can’t take anything for the pain, either, apart from paracetamol, because ibuprofen and whatnot all fuck with your digestive system even more. It’s not exactly the sort of condition that you want to tell people about, either. Most people haven’t heard of it, although with the older generation (who know these things, I suppose, because they’ve had more time to know more unwell people) I can mostly get sympathy if I say ‘I have something in the same family as Crohn’s Disease’, since Crohn’s has a catchier name than UC, I suppose?
Anyway, before I was diagnosed, I was symptomatic for around two years, with it gradually getting worse and me never thinking it was something worth checking out. When I finally did, I was classed as ‘urgent’ by my GP, and was seen by the Gastro peeps at Middlemore within a couple of weeks. Apparently the waiting list for Gastroenterology on the CMDHB is 3000 people. So I was pretty lucky to get through the system so damn fast. Then again, obviously my condition’s in the Reasonably Serious sector, considering that there have been several times in the last few months that I’ve considered going to the ED at the hospital because the pain’s been so unbearable. But back to the long term symptoms. Due to my long-term unattended internal bleeding, I was seriously anaemic when they ran a blood test.
Fun fact – iron tablets can cause stomach cramps! Just what I need. So I’ve been getting worse at taking them (even though I started out being totally zealous about it), because often lethargy is a more pleasant alternative to MORE pain.
So I’m in pain, tired, and generally don’t function very well, sometimes. I’m still a pretty perky person, as far as most people would think, but so much less so than I used to be. This year was meant to be awesome, and in some ways it has been. Academic awesomeness was assumed, because I figured ‘AHA. Now I know why I’ve felt like crap. Now they will give me drugs and it will fix it and I’ll be back to ZAP POW Briar in no time!’. Yeah. Not so much. Doesn’t help that being constantly ill brings out depressive characteristics, which can be exacerbated by the meds I’m on. Flatting is good, mostly, as in it’s nice being closer to uni, and to the boyfriend (which is also a Good Thing of this year) and to the world in general, but I’m still not terribly good at cooking, my unexplained bathroom behaviour (THANKS, UC) probably makes my flatmates think I’m crazy, and in general, I do kind of really wish that the Mel/Belle/Chetan flat plan had actually happened.
I don’t know. 2011 has been a mixed bag, so far. Today possibly represents my year in something of a nutshell, for the interested –
– Wake up 5 minutes before alarm goes off, in order to use the bathroom. Decide that it’s way too early to be up, so reset alarm for half an hour later.
– Press snooze at 7am.
– Actually get up at 7.10am. Get dressed and ready as quickly as possible after cursory sink-based ablutions, bathroom again, and book it to the bus, since I have an 8am start at work on Wednesdays (HA, I haven’t even started about work. Another time.)
– Get to work late, brushing cookie crumbs off jumper because I didn’t have time to eat breakfast (didn’t have any bread anyway, and can’t tolerate milk for cereal. Was out of rice milk)
– Realise that Today Is A Bad Colitis Day. Silently swear to self as I duck to the bathroom straight after getting in the door.
– Rinse and repeat a cycle of doing some work (shelving, fielding calls, sales, etc), pressing my hands to my tummy to see if pressure will help the sudden pain that I’m inevitably feeling, then run off to the bathroom. Again.
– I think the rinse and repeat cycle was eight times today? On a FOUR HOUR shift. FML.
– Leave work at midday, see conveniently recently timed text from boyfriend, reply to said text, including own comfort-seeking agenda.
– Get hug from boyfriend, wander about a little with him while he gets/eats food, and hang out briefly after that before he returns to the recesses of campus to continue pursuing The Honours Dream.
– Feel somewhat better, on all fronts. Emotionally, thanks to the bf-contact, and internally, thanks to the fact that it’s about 1pm now and generally my symptoms aren’t nearly as bad in the afternoon.
– Realise that I don’t feel better enough to actually sit through my English lecture.
– Walk down to Queen Street, defeated.
– Decide Lush will help my problems go away, hang out there sniffing things and chatting to the girls there, leave with products with intention of lovely Lushy shower upon arrival home.
– Get to bus, listen to music instead of read.
– Get home, make mi goreng, sit on bed with laptop for the next several hours, unable to muster up energy/desire to actually make that lovely Lushy shower happen.
– Receive text from mother telling me next appointment with gastroenterologist is morning of June 14th (my mail from Middlemore still goes to my mum’s place)
– Internally rage because I HAVE AN EXAM ON THE MORNING OF JUNE 14TH and possibly this will mean an even longer delay until I actually can see Dr Patrick.
And that’s where I’m at right about now.
If you’ve read this far, congratulations, you deserve one of the Fruit Bursts in the bag beside me. I will end here, for fear of typing forever. This may have not exactly been prose practise, but hey, stringing words together again is a start, right?