Thursday, March 25, 2010

Life is short...time to sort it out

So I went to see my French GI doc on Tuesday and I was delivered bad news. "It's flaring worse than 4 weeks ago".....well I know what to do...his response was to up the preds to 30mgs again and if that didn't work then in 2 weeks he was going to put me on a new medicine which will need weekly blood tests and can do something to your heart!

Yep, that scared the bejezzus out of me and after paying my 28 euros I left the surgery stunned and then started to cry. How the hell did I get myself into such a mess? It's not fear! Why me?

So for those with UC, well, you know the emotions we suffer. But (2 days later) now I'm pissed! So I decided a few things.....NO, I will not up the preds, in fact I dropped to 5mg today....and no I won't take any medicine that could affect my heart! I'm so pissed off that I'm cortisone dependant now that there is no way I'm going back up to 30mg. These are the reasons why:-
  • Yep there is a bit of mucus and bleeding, but no I'm not running continually to the toilets.
  • I've been stressed over my boys op and family stuff going up now for quite a while.
  • I've been eating way too much sweet stuff and god knows what that's been doing to my insides.
  • I've put on 4 kgs and that is just pissing me off now too
  • I'm sick of living in France and want to go's just too hard here
  • My boy has been getting too many sore tummies lately and that's playing on my mind. I don't want him to have what I have.
So what am I going to do about it.
  • Well, I'm still stuck here for another year for I can't move, but I can find another GI that speaks a bit more English
  • Not increase the preds, instead I'm going to finish up on then in 7 days
  • For at least the next 3 weeks I have stopped eating eating refined chocolates, no sweeties, no ice-cream, no sugar in tea (and that should help reduce the weight)
  • Do a bit more extra 30 mins walking or some wii fit maybe.
  • Listen to Guy's hypnotherapy recording with Geoffrey
All I know is that I need to get properly into remission and I have to get off the preds. So already I started reading Guy Cohen's book again and listening to Geoffrey's recording. I've cut out sugar and hopefully in a few weeks I've seen some decent signs of the UC going again.

In 2 weeks I go back to see my GI doctor and since I'm not following his instructions I'm really hoping for an improvement.

Sunday, March 21, 2010

Here we go again

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 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 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 how do I unravel myself...time will tell ... fear is a scary thing ...

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 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 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 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