So me and my weight. How's it going? Glad you asked. :P Currently down to 83.2 kilos, which is what I weighed this time last year, before all this Crohn's stuff started (well, at least before I was diagnosed). I do have just under 3 kilos to go however to lose the Pred weight, but that'll come. Have vaguely been watching the story of the guy below, the fitness trainer who became obese and then attempted to lose the weight again to better understand his clients. It make me feel so much better that he struggled too.
http://www.news.com.au/national/paul-james-almost-back-to-his-original-weight/story-e6frfkvr-1225811164362
See? Even perfect people aren't so perfect!
Meanwhile, I've got the cranky pants on with the rhumy. Went and saw him nearly a week ago now, and he basically didn't listen to a word I said. Stuck with his usual story of heat, exercise and massage will fix it, gave me a shot in each shoulder and sent me on my merry way. Shots didn't work and I'm more than a little disgruntled about it. It would have been nice to be in less pain for Christmas and new year, but hey. Obviously that's not going to be the case.
The Crohn's is behaving itself, as best as Crohn's can behave, and the fructose stuff seems to be non existant (I had a self indulgent moment yesterday and had a few slices of garlic bread for lunch. No effects.).
Showing posts with label links. Show all posts
Showing posts with label links. Show all posts
Thursday, December 17, 2009
Wednesday, October 21, 2009
Not so alone
So I was just randomly scrolling through a news website I read regularly, and happened to stumble across the article I've linked to below.
http://www.news.com.au/story/0,27574,26239877-29277,00.html
It just feels really nice to know I'm not alone! :)
http://www.news.com.au/story/0,27574,26239877-29277,00.html
It just feels really nice to know I'm not alone! :)
Monday, July 20, 2009
The Gutsy Girl
http://thegutsygirl.blogspot.com/
That blog up there? I've been watching her pretty much since I started blogging here. And she's awesome.
If you're reading this, reading your blog often makes me feel better when I'm having a "waaaah why do I have to be the only person on the planet dealing with this?" moment (also brings me back down to earth and reminds me that I am not indeed the only person on earth dealing with it). Also, the food you're cooking and sharing with the world? Looks absolutely amazing and delicious and I'm itching to try my hand at some of it. So thankyou for blogging!
That blog up there? I've been watching her pretty much since I started blogging here. And she's awesome.
If you're reading this, reading your blog often makes me feel better when I'm having a "waaaah why do I have to be the only person on the planet dealing with this?" moment (also brings me back down to earth and reminds me that I am not indeed the only person on earth dealing with it). Also, the food you're cooking and sharing with the world? Looks absolutely amazing and delicious and I'm itching to try my hand at some of it. So thankyou for blogging!
Sunday, July 5, 2009
Awareness
http://awarenessgiftboutique.com/cgi-bin/store/cpshop.cgi/causescg.awarenessgifts.6036038+crohns-disease-awareness-t-shirts-and-gifts.html
I was looking for what colour the Crohn's awareness ribbon is (turns out it's dark purple) and scrolling through the Google search results and found the above site. Well, moreso the main page of it, and I started crying. Relief. Someone at least is taking the effort to try and promote awareness of my disease, someone is trying to promote awareness that it needs a cure. I think I might just love this person.
I was looking for what colour the Crohn's awareness ribbon is (turns out it's dark purple) and scrolling through the Google search results and found the above site. Well, moreso the main page of it, and I started crying. Relief. Someone at least is taking the effort to try and promote awareness of my disease, someone is trying to promote awareness that it needs a cure. I think I might just love this person.
Friday, June 5, 2009
Update of sorts
So I made it to work on Wednesday. Took script for Salofalk to chemist after work. Went to pick it up and was told sorry, it won't be in until tomorrow. Fine, no worries.
Thursday, yesterday, off work again with the pain, so because sore hands equal uselessness, I got to sit there watching Oprah. Dear Gods. Mum also went to pick up the Salofalk and he'd only ordered one box instead of the two on the script. She also took me to a different (read better) chemist later on and I now have wrist strap/support thingers. They seem to help a little in that they keep body warmth in and that seems to limit the pain in the wrists a little, but they do nothing for the fingers, which is sad. Massive headaches yesterday, as well as worrying bouts of dizziness. Though, the nausea hasn't been back since I stopped the Imuran.
Today, I'm braving work again. Still sore, but I need the money, and a feel useless and unreliable by taking so much time off. Also have to drag myself back to the chemist today (day three of the Salofalk saga....) to get the second box. Won't be getting him to fill anymore scripts. There's been too many dramas with my meds that I'm just not happy with. Lucky there's a few others sort of nearby.
Out of sequence I know, but Tuesday night I went to the support group ran by CCA (Crohn's and Colitis Australia). First one in a few years that they've had. I think there were six or so of us there that had Crohn's or Colitis, one of whom bailed early with a look of terror on her face (her partner had a look of disgust on his). Three of us have the same doctor. It was good to be there. I wasn't sure at first if it would be worth it, but we basically just sat around sharing our experiences (which in my case is limited, but hey). It was interesting and actually really helpful to hear the others' stories, they all varied from a guy not much older than me to a retiree who had one of the first ops for it back in 1980 or 1981. I thought that because everyone with IBD has a different story that it would make me feel more alienated and more alone, but it did just the opposite, made me realise that there are others out there. Yeah, okay, I knew that, but meeting some of them made it a bit more real and a bit more dealable.
Am also thinking on doing some fundraising for CCA. Toying at the moment between a Krispey Kreme fundraiser thing (sort of like a lamington/pie drive), or selling my candles and the profits go to CCA (sort of a cheesy 'light at the end of the tunnel' thing if people need a link between candles and crappy bowels - pun intended). Fundraising would give me something to do, and also provide me with hope that maybe through me doing something there will be a cure in my lifetime. It's highly doubted, but one can hope, no?
Weekend, I will be attacking shops. Clothes, and also The Sims 3 came out in Oz yesterday, so I'll be hunting for that and hoping that places haven't sold out yet (yes, I'm a massive Sims geek).
Haven't really come accross any fantastic recipes lately, and the only real food discovery I've had is that store bought potato salad = bad. *shrug* Just means I have to make my own. What a shame. :P
Also, links below! ACCA is the old name for CCA, and the forum is fantastic, even for lurkers like me. ^_^
http://www.acca.net.au/
http://www.ibdaustralia.org/forums/index.php
Thursday, yesterday, off work again with the pain, so because sore hands equal uselessness, I got to sit there watching Oprah. Dear Gods. Mum also went to pick up the Salofalk and he'd only ordered one box instead of the two on the script. She also took me to a different (read better) chemist later on and I now have wrist strap/support thingers. They seem to help a little in that they keep body warmth in and that seems to limit the pain in the wrists a little, but they do nothing for the fingers, which is sad. Massive headaches yesterday, as well as worrying bouts of dizziness. Though, the nausea hasn't been back since I stopped the Imuran.
Today, I'm braving work again. Still sore, but I need the money, and a feel useless and unreliable by taking so much time off. Also have to drag myself back to the chemist today (day three of the Salofalk saga....) to get the second box. Won't be getting him to fill anymore scripts. There's been too many dramas with my meds that I'm just not happy with. Lucky there's a few others sort of nearby.
Out of sequence I know, but Tuesday night I went to the support group ran by CCA (Crohn's and Colitis Australia). First one in a few years that they've had. I think there were six or so of us there that had Crohn's or Colitis, one of whom bailed early with a look of terror on her face (her partner had a look of disgust on his). Three of us have the same doctor. It was good to be there. I wasn't sure at first if it would be worth it, but we basically just sat around sharing our experiences (which in my case is limited, but hey). It was interesting and actually really helpful to hear the others' stories, they all varied from a guy not much older than me to a retiree who had one of the first ops for it back in 1980 or 1981. I thought that because everyone with IBD has a different story that it would make me feel more alienated and more alone, but it did just the opposite, made me realise that there are others out there. Yeah, okay, I knew that, but meeting some of them made it a bit more real and a bit more dealable.
Am also thinking on doing some fundraising for CCA. Toying at the moment between a Krispey Kreme fundraiser thing (sort of like a lamington/pie drive), or selling my candles and the profits go to CCA (sort of a cheesy 'light at the end of the tunnel' thing if people need a link between candles and crappy bowels - pun intended). Fundraising would give me something to do, and also provide me with hope that maybe through me doing something there will be a cure in my lifetime. It's highly doubted, but one can hope, no?
Weekend, I will be attacking shops. Clothes, and also The Sims 3 came out in Oz yesterday, so I'll be hunting for that and hoping that places haven't sold out yet (yes, I'm a massive Sims geek).
Haven't really come accross any fantastic recipes lately, and the only real food discovery I've had is that store bought potato salad = bad. *shrug* Just means I have to make my own. What a shame. :P
Also, links below! ACCA is the old name for CCA, and the forum is fantastic, even for lurkers like me. ^_^
http://www.acca.net.au/
http://www.ibdaustralia.org/forums/index.php
Friday, April 3, 2009
I think I can safely say that pooh occurs.
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/
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/
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