So. This is me attempting (probably in vain) to bring some normality back into my life.
Two weeks ago on the 20th March 2009 I finished work and wandered off to see the gastroenterologist (major achievement for me because that word is huuuuge). I'd been suffering abdominal and back pain, as well as diarrhoea since mid July 2008, and when the blood started appearing I'd finally had enough, so the GP sent me to see this bloke.
Wasn't so fun. Had to go through the personal and family medical history, strip so he could poke at my stomach, and then be told I needed to go and get needles jabbed in me to collect blood, and collect a pile of poop, and take a day off work on Monday (still on three month probation cause it's a new one) to go into hospital, be knocked unconscious and have things shoved up my butt and down my throat.
Oh yeah, and I had to stick to a diet over the weekend which involved very limited foods on the Saturday (plus approved clear fluids), then on Sunday only the delightful approved clear fluids, and then I got the joy of having to consume three doses of stuff that made me poop tap water for the whole smegging night (seriously, tap water's not quite right. Tap water has a thicker consistency than what came out my butt that night).
Weekend saw me become grumpier and grumpier and more and more miserable. Hate needles, so the blood tests weren't so fun (and plus I had to wake up early for them). Then came the gathering of the poop. While I knew my poop wasn't perfect (face it, who's is?), it was still rather upsetting to actually see it. Slime, vaguely tinted brown, with a dollop of blood for good measure(hey, the description of this blog does say the good, the bad and the ugly). Spent two or three hours straight on the loo on Sunday night, pooping tap water and reading, not even clear fluids from midnight.
Monday morning rocked around and off to the hospital to have my dignity removed. Sat around for a while waiting in nothing but a hospital gown. Tired, hungry, sore, coming down with a cold was all making me grumpy enough. I think I started snapping at people about this point. Needle shoved in vein eventually to get some fluids back into me, but first, here, have this, you'll be light headed. Remember nothing until waking up and noting my fingernails were a delightful shade of dark blue. Took a few hours to get back to normal. That night for dinner, the best roast chook, mashed spud, carrot and beans that I can ever remember having.
Last Friday, 27 March was Show Holiday were I am, so got the day off work and got paid for it. Went to see the gastro person for a follow up appointment.
Guess what? You've got Crohn's.
So. My treatment (at present) involves:
- 1 x 25mg tablet of prednisone in the morning
- 3 x 5mg tablets of prednisone in the morning
- 2 Salofalk tablets (currently both morning and night, so 4 all up, soon to go up to a total of 6)
- An oh so delightful and dignifying prednisone enema every night.
Gastro person is away, from last Friday, for three weeks conference leave. Not so happy about this. See, went to get scripts filled on the Friday, no probs bar for the enemas which weren't in. Got home on Monday and my mother had gone and got them for me. I was expecting something smaller. And I was meant to go out for dinner with friends that night too, but had the lovely task of trying to get my head around how the feck that much stuff was going to go the wrong way up my butt and stay there. Worked myself into enough of a state quick enough that I just didn't bother with dinner.
Tablets don't seem to be a prob for now*, however the enemas are still not so good. See, they're 100ml (20ml of prednisone in that), and you're meant to somehow get all of that into your butt, lay on your stomach for 5 minutes, then go to sleep in any comfortable position. By the time half of that stuff has gone in, I'm getting rather bad stomach pains. Soldier on, and spend time laying on my stomach reading. Why not sleep? My butt does this wonderful.... how to describe it? Tug-o-war almost? It tries to squeeze out the stuff that's not meant to be in there and is making it uncomfortable, then quickly goes 'No! Wait! That's got to stay there!', or it feels like the diarrhoea it's so used to, so it tries to squeeze it back in. NOT FUN! So it happens with an hour or so before I'd normally go to sleep, but when you need to fart (yes I will be uncouth and use that word) and you're in that much discomfort and pain, it doesn't even stay in that long and you do wonder if it's worth it and how much good that tiny little bit of time is doing. So you see, the doc being away isn't so much fun because a/ he didn't give me any instructions on how to do the thing, but b/ didn't tell me what it would be like or what to do should I have any problems while he's away.
*Doctor also failed to tell me most of the side effects of the meds I'm on. He said I'd get more pimples and would end up moon faced (rather round in the face). He neglected to mention the following:
- Extreme tiredness
- Insomnia, despite above extreme tiredness
- Lack of coordination - seriously, it's taking forever to type this. I go to hit what I know are the right keys but then random nonsense appears on the screen. V. frustrating.
- Difficulty in focusing - takes a while to focus on anything, really shouldn't be driving, but hey.
- Major temp differences. I go from freezing cold one second and craving a few blankets and a hot water bottle, to drowning in sweat and near needing a change of clothes from it. And there'll be no change in the air temp around me, or in my current activity.
- Moods that aren't my own - I went shopping yesterday arfternoon and spent the entire time getting more and more worked up, became convinced rather quickly that anyone and everyone was trying to steal stuff out of my bag, or put things in my bag to frame me, or (better yet) were sidling up to me in order to molest me. Then just got to the point where I couldn't stand being around people and got scared and couldn't breathe. Got to the car and cried. This is not me. I am a confident person most of the time, and the knowledge that I can sit there and go 'hang on, this isn't me', yet not do anything about it is rather upsetting.
- Dizziness and disorientation, which add to making crowds oh so pleasing.
- Extremo with the hunger. I hate it, because I know what I eat already is too much, but I get so damn hungry with the meds that I continually find myself looking for more food. Hate for it!!!
All this and I've only been on the meds a week. I can also expect to look forward to:
- Weight gain everywhere else, and from what I've read of others' blogs, it won't just be a small amount.
- Roid rage (Prednisone is a steroid). May already be experiencing this to a certain degree.
- Pain in my joints.
There's other stuff there too with side effects I could experience. I'll throw a few links below in this post on various things (Crohn's, meds, etc) so that I don't have to retype entire Wiki articles.
Righteo. That's the past few weeks summed up. Now for a here and now update. I'm at work. I'm tired as. I'm sweating. My fingers are sore. I have a twitch under my left eye which is driving me insane (coincidently, it appeared a few months before the HSC then went away afterwards, it's come back again occasionally during times of stress, and funilly enough, it's come back since the diagnosis). I'm a little on the miserable side, mistyping things for work isn't making it easy. I'd actually really like to curl up in the corner behind my chair and go to sleep. Either that, or go home and do the same in bed.
Now for those links.
Wiki on Crohn's
http://en.wikipedia.org/wiki/Crohn%27s_disease
Wiki on Prednisone
http://en.wikipedia.org/wiki/Prednisone
Wiki on Mesalazine (Salofalk)
http://en.wikipedia.org/wiki/Salofalk
Crohn's and Colitis Australia
http://www.acca.net.au/
Lauren Nastasi on Crazy Sexy Life
http://crazysexylife.com/2009/life-with-crohns/
No comments:
Post a Comment