Delete...

It's so easy just to hit the delete button on my computer to make things nice and tidy. It's such a shame I can't get into my own body's system and hit delete on UC.

Then again, just because you've hit delete on your computer, it doesn't mean it's completely gone away...it's just hidden from view for now... the only way to get rid of something completely is to re-image it...mmmm...now if only I can figure out how can I do that for myself...but to begin with I have to have an image to be able to restore to...maybe that is what all the self help imagery is about...I'll have to think about that.

I think I got dumped by the Doc

Well, this has been an interesting week. I went to see my GI on Tuesday with a little bit of trepidation as I hadn't followed his instruction...(see previous blog)..little did I know how badly he was going to take this. Now the French can be highly strung and are quite likely to through a wobbler at you over something that wouldn't really bother me, but then again we're all different and react to things differently. Anyway, basically I told him that I hadn't done as instructed with the medicines, but had in fact finished with the predisolne and wasn't going back on them at least for the next couple of months. They are evil little tablets, but unfortunately for me, they are the only thing that works to bring the flare up under control. Now that I'm finished them though, I'm told that it could be up to 6 months before my own body is creating the correct levels of cortisone.

Also of note, is that the bleeding and mucus had actually subsided. There still is a bit of mucus, but the bleeding is now minimal and hopefully will become less and less.

So what did I do to get to here....well I moved away from mesalazine and back onto Sulfsalazine(both 5-ASA). For me mesalazine wasn't working..I have no idea if it ever worked neither as I was put on sulfsalazine first, but came of it when I got headaches. Anyway, I tried mesalazine for over a year and it didn't seem to make any difference..in fact I only got worse. I also am back on the wheat grass tables, Vitamin B (for stress), daily Probiotics via yogurt and have a Paul McKenna CD to try and change my life in 7 days.

I've not been very good though with the refined sugar over the past few days...those damn Easter Eggs :D

So back to my GI...well basically I wasn't asked to make a further follow up appointment. Maybe I'm being too sensitive, but surely (and as has been the pattern for the last 9 months) he would have wanted to check up on me in a months time....oh well, not this time by the looks of it.

Maybe this should be the catalyst for me to find a new GI :D

The state of affairs...

So, I'm done with the steroids...finished on Saturday...OMG..scary or what..but I intend to hang in there...unfortunately my resolve to stay away from refined sugar was a bit buggered by Easter, but I did last 1.5 weeks. Did it make a difference...honestly I think not, but I did have a go at least.

Good news is that my UC has gotten no worse and I've lost 1.5 kgs...excellent...and I'm still listening to Listen to Guy's hypnotherapy recording with Geoffrey and have also just got a book and CD from the Paul McKenna collection. Time will tell.

Back to the GI on Tuesday...oh lucky me .... NOT!

Oh and before I go .... a lesson I learnt last week, was not to surf the internet for information that I really do not need to know about right now as all it does is put scary pictures into your head for a procedure you don't yet need!!!

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 that...so 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 home..it'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 sugar...no chocolates, no sweeties, no ice-cream, no sugar in tea (and that should help reduce the weight)
• Do a bit more exercise..an 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.

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 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 ...

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.

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....