What a week...but at least it's over and another new week is about to begin. Now that I don't work, I actually look forward to Mondays! Somehow I don't think I'll be saying that next year when life returns to normal back in Australia!
Anyway, my boy's operation is over and he's starting to heal nicely. I kept him off school for 4 days in the end as he wasn't ready at all to go back on Friday. So much for him only having one day off as advised by the doctor. That was actually a pretty scary day. They took him away from me at 8.35am and he didn't come back until 10.35am. I was panic stricken at that stage and was too scared to ask the nurses what was going on. It was only later that I found out that I should have went with him as far as the operating room, but no-one told me that and it's not something that I would have thought to ask them before. Anyway, it's all over and done and boy was I relieved to have him back. He seemed none the worse for it all and in fact was quite chirpy about it all. Now this is not at all like my 7 yr old. Maybe this experience had made him stronger. One thing I have learnt over the last few weeks, is to tell him what is going to happen, how much it's going to hurt etc and he seems to be able to handle it. I do fear for both my kids though, but maybe there is a lesson in this for me to learn too. I don't want them to get UC, and maybe they won't..they didn't get my shitty teeth, so maybe they won't get my shitty UC neither.
So tomorrow we're into another new week. I have another UC doctors appointment this week that I was supposed to have last week, but I cancelled it due to the boys op. Realistically I didn't want to go anyway. I'm holding my own...well, I'm kind off holding my own. I'm down to 10mgspred with 2 more days to go, then I'm down to 5mgs for the next 10 days..then I'm done. I have a little bit of mucus and a tiny bit of blood, but no pain and no urgency..so that's good as far as I'm concerned. I'm also using a suppository that I got from my last trip back home when I notice the blood / mucus increasing. I'm hoping this will keep things under control this time.
So what have I learnt from last week...well, as usual I panicked over nothing...both I and the boy survived his operation in one piece...so my lesson is to stop worrying about things that might not happen...easier said than done for me I think ... I'm just big bundle of messed up nerves..so how do I unravel myself...time will tell ... fear is a scary thing ...
Sunday, March 21, 2010
Thursday, March 11, 2010
Iron tablets and UC
My iron levels (yep, just like my cortisone levels) have been low. The Doctor put me on iron supplement tablets. I managed to stay on them only for 10 days as they seemed to play havoc with my insides. Just a few pains, nothing too major, but just enough to make to decide that I didn't want to take iron supplements. I'd heard before that iron supplements and UC we not a good combination, but I don't know why. I'll have to try and increase my iron levels by eating iron rich foods instead and see what happens.
Thursday, March 4, 2010
Low cortisone levels
So this is going to be a bit of a whingy blog as I am constantly battling my issues over the so called specialists' knowledge.
So basically I find myself now with very low cortisone levels...not good for someone trying to get off the steroids.
Back in November I should have seen the warning signs, but I'm not a doctor so I didn't think that much about not getting the full on 'rush' and 'euphoria' when I commenced taking prednisolone at 50mgs. At the time I did think it was strange as my previous experience on prednisolone had seen the euphoria as well as the mood swings or irritability. Also it seemed to take a lot longer to get the UC under control this time...it was 4 weeks of 50mgs before the blood cleared up, although my stools returned to normal quite quickly, i.e. less than 2 days.
So in future and at the onset of bleeding but before I get told to get back on prednisolone I'm going to ask for a blood test which will include my cortisone levels, just so I know where I'm starting from. I feel that the specialist should have done more blood work, but as this is quite new to me still, I'm on this huge learning curve about what I should and shouldn't be doing and when. Also they are supposed to know about this stuff, but sometimes I feel like a guinea pig and they are practising their theories on me...but at what cost?
In fact, I don't want to go back on prednisolone once I finally get off this round, but to do that I have to get my UC under control and stop stressing out about every little thing in life.
I'm going to go back to Guy's book and read it again and see if I can do more with his 'rewind' technique as I really couldn't get a handle on that last time....
So basically I find myself now with very low cortisone levels...not good for someone trying to get off the steroids.
Back in November I should have seen the warning signs, but I'm not a doctor so I didn't think that much about not getting the full on 'rush' and 'euphoria' when I commenced taking prednisolone at 50mgs. At the time I did think it was strange as my previous experience on prednisolone had seen the euphoria as well as the mood swings or irritability. Also it seemed to take a lot longer to get the UC under control this time...it was 4 weeks of 50mgs before the blood cleared up, although my stools returned to normal quite quickly, i.e. less than 2 days.
So in future and at the onset of bleeding but before I get told to get back on prednisolone I'm going to ask for a blood test which will include my cortisone levels, just so I know where I'm starting from. I feel that the specialist should have done more blood work, but as this is quite new to me still, I'm on this huge learning curve about what I should and shouldn't be doing and when. Also they are supposed to know about this stuff, but sometimes I feel like a guinea pig and they are practising their theories on me...but at what cost?
In fact, I don't want to go back on prednisolone once I finally get off this round, but to do that I have to get my UC under control and stop stressing out about every little thing in life.
I'm going to go back to Guy's book and read it again and see if I can do more with his 'rewind' technique as I really couldn't get a handle on that last time....
Tuesday, March 2, 2010
Continually Scared
Why do I surf the internet to find stuff out about UC? All it ends up doing is scaring me...which in turn stresses me out...which in turn makes me think I'm going to have a full on flare-up! That's the circle that I continually find myself in. So it's time to stop it.
Yep, I'm worried about stuff, but then again, who isn't worried about stuff (big or small)...most of it I can't control and yes I do now realise that it's abnormal to get as worried as I do about stuff, but I just can't help it...who would I be if I didn't have something to worry about? Maybe a very content person...maybe a very stupid person...who knows....ignorance is bliss as they say.
So this week, after reading more stuff about UC and other people's experiences I have successfully scared myself last night over the meds I'm taking...so today, I'm going to have a big talk to myself (yep...first sign of madness) about what I'm doing to myself and somehow, I going to get myself calmed down and not going to set myself off with another UC flare-up! I know it's all controlled by my mind and what I'm thinking over a period of time.
On another personnel front..I'm worried about my boy's up coming operation....he is now 7 and has to have circumcision because of issues and infections in the last 2 years. I worry about the operation and the pain that he will have to deal with afterwards and unfortunately my boy is also a born worrier, so I've hidden facts from him. We'll deal with those later once he's in recovery. His operation is in France in 2 weeks..so yet again I deal with the language barrier..oh to go home for good....oh well, one more year in France to cope with...back to Oz in 2011
Yep, I'm worried about stuff, but then again, who isn't worried about stuff (big or small)...most of it I can't control and yes I do now realise that it's abnormal to get as worried as I do about stuff, but I just can't help it...who would I be if I didn't have something to worry about? Maybe a very content person...maybe a very stupid person...who knows....ignorance is bliss as they say.
So this week, after reading more stuff about UC and other people's experiences I have successfully scared myself last night over the meds I'm taking...so today, I'm going to have a big talk to myself (yep...first sign of madness) about what I'm doing to myself and somehow, I going to get myself calmed down and not going to set myself off with another UC flare-up! I know it's all controlled by my mind and what I'm thinking over a period of time.
On another personnel front..I'm worried about my boy's up coming operation....he is now 7 and has to have circumcision because of issues and infections in the last 2 years. I worry about the operation and the pain that he will have to deal with afterwards and unfortunately my boy is also a born worrier, so I've hidden facts from him. We'll deal with those later once he's in recovery. His operation is in France in 2 weeks..so yet again I deal with the language barrier..oh to go home for good....oh well, one more year in France to cope with...back to Oz in 2011
Monday, February 1, 2010
The timing couldn't have been any worse
This is 4 weeks late being posted....dooohhh....but better late than never...and I can laugh about it now :D
Monday 1st Feb - OK...I'm due to fly to Australia tomorrow. Normally planes journeys scare the UC back to life, but I've been blood free now for a couple of months...thanks to the steroids...so what stupid thing do I go and do on Saturday? I go skiing and I get hurt!
I ran into a tow lift..or rather, it appears that the stupid woman using the tow lift throw her 'button' lift at me! I was knocked out for 30 secs or so and when I came too there was a heap of bright red stuff in the snow...shit it's blood and there was loads of it!!! Thankfully although I was severly hurt and shaken up, somehow all my teeth were intact and I hadn't broken anything! But my flight back to Oz is with one really black eye..one little black eye and a very bruised jaw line....ah....what a pretty picture to travel with....so I posted pictures of my new look of facebook just so everyone know what to expect when I arrived.
and back to now .....
Oh well black eye and bruising lasted for 2 weeks, but lesson learnt..stay away from button lifts at the exit.
On the UC front, things are mainly ok, except that my last blood test results showed low iron cortisone levels and there is a touch of bleeding as I reduce the steriods. But all in all, I feel ok and I have all my "extra" meds from Oz back with me in France now. I'm back to see my Doc in 2 weeks, so we'll see how were doing then. I'm hoping the few blood traces are something that my maintenace drug (salazopyrin) will sort out soon.
Monday 1st Feb - OK...I'm due to fly to Australia tomorrow. Normally planes journeys scare the UC back to life, but I've been blood free now for a couple of months...thanks to the steroids...so what stupid thing do I go and do on Saturday? I go skiing and I get hurt!
I ran into a tow lift..or rather, it appears that the stupid woman using the tow lift throw her 'button' lift at me! I was knocked out for 30 secs or so and when I came too there was a heap of bright red stuff in the snow...shit it's blood and there was loads of it!!! Thankfully although I was severly hurt and shaken up, somehow all my teeth were intact and I hadn't broken anything! But my flight back to Oz is with one really black eye..one little black eye and a very bruised jaw line....ah....what a pretty picture to travel with....so I posted pictures of my new look of facebook just so everyone know what to expect when I arrived.
and back to now .....
Oh well black eye and bruising lasted for 2 weeks, but lesson learnt..stay away from button lifts at the exit.
On the UC front, things are mainly ok, except that my last blood test results showed low iron cortisone levels and there is a touch of bleeding as I reduce the steriods. But all in all, I feel ok and I have all my "extra" meds from Oz back with me in France now. I'm back to see my Doc in 2 weeks, so we'll see how were doing then. I'm hoping the few blood traces are something that my maintenace drug (salazopyrin) will sort out soon.
Monday, January 18, 2010
Dentist V Colonoscopy
I'm afraid of the dentist...I was born unluckily with crappy British teeth, possibly due to the lack of fluoride in our water in NI. Though saying that, I could be dealing with other issues today if there had been fluoride in our water..who knows...
So, I'm off to the dentist on Thursday to have a filling changed as I broke the top of it off just before Christmas and have had a temp filling in place since then. The way I see it, I have 2 choices....go the the dentist twice (this week and next) for 45mins each and get it fixed properly now or chicken out and wait until the temporary one falls out and then go back. I'd love to choose my 2nd option, but how stupid would I be!! Then I started think, what would I rather do...go to the dentist or have a colonoscopy....surprisingly and weirdly enough ...I'd rather have a colonoscopy...see I told hate going to the dentist, but I'm going to go and do what I have to do (one this occasion anyway :D)
The steroids are still doing their job on the 5 month UC flare-up front and surprisingly I'm quite happy these days...stressed with French life and their bureaucracy, but otherwise happy. I'm down to 30mgs now and have I reckon about 6 weeks left on the preds before I'm back only on an maintenance drug.
We're off home to Australia in a few weeks and so far the stress of flying has not built up. I've been crap with flying ever since I had kids...no idea why..it's totally irrational, especially since I used to love flying.
Lets see how I'm doing when I get back :D ... I'm hoping to be down to 10mgs and on the steroid free home straight again :D
So, I'm off to the dentist on Thursday to have a filling changed as I broke the top of it off just before Christmas and have had a temp filling in place since then. The way I see it, I have 2 choices....go the the dentist twice (this week and next) for 45mins each and get it fixed properly now or chicken out and wait until the temporary one falls out and then go back. I'd love to choose my 2nd option, but how stupid would I be!! Then I started think, what would I rather do...go to the dentist or have a colonoscopy....surprisingly and weirdly enough ...I'd rather have a colonoscopy...see I told hate going to the dentist, but I'm going to go and do what I have to do (one this occasion anyway :D)
The steroids are still doing their job on the 5 month UC flare-up front and surprisingly I'm quite happy these days...stressed with French life and their bureaucracy, but otherwise happy. I'm down to 30mgs now and have I reckon about 6 weeks left on the preds before I'm back only on an maintenance drug.
We're off home to Australia in a few weeks and so far the stress of flying has not built up. I've been crap with flying ever since I had kids...no idea why..it's totally irrational, especially since I used to love flying.
Lets see how I'm doing when I get back :D ... I'm hoping to be down to 10mgs and on the steroid free home straight again :D
Monday, January 4, 2010
Happy New Year :D
Sorry, I kind of disappeared for a little while there...that's what 2 kids, a few trips and December did to me this year :D
And the reason that I was able to be so busy was that I have finally, after 5 months gotten this bloody UC under control, thanks finally to have been given to the steroids I was so desperate for in July. The positive thinking does go a long way in helping UC and believe me when I say that without it and Guy's therapies, I would have been a hell of a lot worse of. I just needed a bit more a helping hand to get this flare-up under control so that I can try and maintain it now.
The trip to Paris with the kids also getting their day trip to Disneyland was a blast. I can't believe that I've never had the urge to visit Paris before. We're already planning our trip back in spring.
Our first Christmas in France has been good. I did have a little hiccup with a slight trace of blood but I put that down to doing too much and a slight bit of stress due to a broken tooth. Yes, it was stupid to get upset over a broken tooth but living here in France and not speaking fluent French causes all sorts of bother when you need to do a simply task! Anyway...tooth temporarily sorted and I'm back for proper filling in a few weeks.
The next thing I have to look forward to is a quick trip back to Oz...that's my big test with UC...I hate flying and it always stresses me out and bang.....I have a flare-up...so fingers crossed..... plus...I'll still be coming down from the steriods...so lets see if I can make it there in back without with any incidents.
Anyway....Happy New Year to everyone...may we all be UC free in 2010
And the reason that I was able to be so busy was that I have finally, after 5 months gotten this bloody UC under control, thanks finally to have been given to the steroids I was so desperate for in July. The positive thinking does go a long way in helping UC and believe me when I say that without it and Guy's therapies, I would have been a hell of a lot worse of. I just needed a bit more a helping hand to get this flare-up under control so that I can try and maintain it now.
The trip to Paris with the kids also getting their day trip to Disneyland was a blast. I can't believe that I've never had the urge to visit Paris before. We're already planning our trip back in spring.
Our first Christmas in France has been good. I did have a little hiccup with a slight trace of blood but I put that down to doing too much and a slight bit of stress due to a broken tooth. Yes, it was stupid to get upset over a broken tooth but living here in France and not speaking fluent French causes all sorts of bother when you need to do a simply task! Anyway...tooth temporarily sorted and I'm back for proper filling in a few weeks.
The next thing I have to look forward to is a quick trip back to Oz...that's my big test with UC...I hate flying and it always stresses me out and bang.....I have a flare-up...so fingers crossed..... plus...I'll still be coming down from the steriods...so lets see if I can make it there in back without with any incidents.
Anyway....Happy New Year to everyone...may we all be UC free in 2010
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