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....
You know, to be honest, I'm not too familiar with cortisone levels and the resulting effects on UC. Something fun for me to look up! I don't think a normal CBC or CMP covers the cortisone levels. I work in an ICU and I think that's an individual blood test, so I think you're right in saying you'll have to specifically ask for it. Good for you!
ReplyDeleteHey Paula - can't offer much help on the cortisone levels either, sorry.
ReplyDeleteBut, I've just been catching up on your blog and I can offer a few suggestions:
1)My boy was older than 7 when we finally gave up and decided he needed a circumcision. It was all absolutely fine. A bit scary for him in the hospital and that, but the procedure and recovery were all problem free.
2)You MUST reduce your worry/anxiety levels to get that UC in check. If there is one cast-iron thing I've learnt it's that anxiety is deadly - you have to break the worry-UCsymptom-worryabouttheUCsymptom-moreUCsymptom-moreworry... cycle. I found that the free relaxation download from Guys website really helped me there.
3)I have persevered with the rewind and I THINK it has helped me alot (don't ask me why or how!), but you have to listen to it - I think it would work if you record it yourself and then listen to it. It is a pretty well founded piece of NLP, there's lots about it online.
I really hope the steroids get working for you soon. Much as I hate that drug, it was the only one that ever, ever actually helped control my UC.
Take care.
@ Charlie - yeah, cortisone levels and UC are new to me too...I'd never thought of the relationship before, but now I'm convinced there's a connections.
ReplyDelete@ Martin - scared about next week for my boy..but know it is for the best. The steriods are working and I'm 3 days off hitting 10mg...should be off in 20 days...just need my own body to wake up and start creating it's own cortisone ... apparently it can take a while to wake up...and the stress levels I'm tryign to deal with ...using Vit B supplements which may or may not be helping..too early to tell yet and I went and found some of the books I had last year and will re-read...I really need to figure out how to make a rewind work for me...it worked for you, but I have problems gettign my mind around it...I think too logically..even though I believe it will work :D