Sunday, 20 September 2009

Whatever you want

Recently there has been much exchange of opinion with regard to alternative therapies and UC. This is great. It is a basic truth that all people should be able to take their chosen route through the wilderness of managing any chronic disease including IBD. Some people are lucky enough to find a workable solution in 5ASA drugs, for others the world of immunosuppressants beckons and proves fruitful. Some embark on life-changing surgery and change their life for the better. Some people dabble in the mysterious world of alternative medicine, whilst others follow it with devotion. Some of us try the whole damn lot. The thing with this disease in particular (I am not informed enough to comment on any other illness) is: everybody seems to find their own pathway to the outcome they want. It may be a long, long road, and it may be painful and sometimes we may be crawling down it on our hands and knees... but we slog on until eventually we find a way to cope, to have a life.

The fact is, though, you've got to try. I have learnt lately that there is no use in just stumbling on with the status quo. You got to strive for whatever you want, whatever you need... sorry, that was unnecessary. (If this means nothing to you, see below. Can I just add here, that I am in NO WAY a fan of this band... honest). Until last week I have simply been finding ways to convince my doctors (gastro and GP) that I need the prednisolone for a little longer. No other drug has worked for me like the horrible little preds when it comes to getting some normality in my life. Mesalazine, Salazopyrin, Pantasa, Azathioprine, 6-mercaptopurine... every single one of 'em has made me more ill. Either massively worsening UC symptoms (mesalazine, 6MP, salazopyrin) and hospitalising me, or making my liver go apeshit (hello azathioprine) and hospitalising me. And so it was that my next dalliance was inevitably to be with infliximab. I have been wary to say the least. But this is all the hospital are offering. Great. It might work... or it might not.

So, I (with some help) have stepped off the 'road of quo'. I have got to. I have to do something. This will be the difference. But this is just me. Lots of people have latched, rather angrily, onto the phrase "you have to want to be well", in order to, rather angrily, criticise Guy Cohens therapy methods. I understand. But I'm not going to let one turn of phrase stop me from trying. I absolutely DO want to be well.

Consider this. I had this conversation with my consultant about 18months ago:

Him: You need to start immuno-suppressants...
Me: I'm not sure, I'm quite worried about their side-effects.
Him: The side-effects are not as bad as the symptoms of UC.
Me: Have you taken it then?
Him: pause... No.
Me: Oh...
Him (and I quote): Look Mr Rich, do you actually want to get better? I'm trying to give you a drug that will keep your UC under control. But, if you don't want to get better, I don't see how I can help you..."

Mmmmm. Now enjoy the Quo.


Paula said...

Isn't life strange...I really really want to get better. You know what, I wonder is any gastro specialists exist that actually have our disease...because if they did, I'm betting we'd have all sorts of different therapies available, including alternatives.

Oh to be younger and have the money (oh and the brains, you need them too) to put myself through medical school...oh that's right I forget..I panic when I see blood...ddoohhh!!!

Skinny Girl said...

Well said, Rich! Unbelievable what your consultant said.

Rich said...

Hey Paula - I guess that's true whatever your chronic disease. The problem is the doctors we do have, well some of them, are not all that good at the old empathy. And mine in particular is used to reeling off the next drug without being questioned. Still you gotta hand it to them because, like you, there is no way on earth that I could do it...

Hello Skinny, I think that if this new road I'm on works my consultant will cheering as much as me - because he'll never have to see me/argue with again! Hurrah!

aliwalidoodah said...

Well put Rich! Can't belive your consultant said that - blogging gold!!