Jiving on Regardless











Yesterday didn’t go quite as planned – another saga in the endless line of sagas my Ulcerative Colitis engages me in!

As I have done for the past eight months (has it really been that long?) I trotted off to the hospital to spend the day having my Inflximab Infusion.  I got there at 10am as required and was promptly told to head for a blood test as I had stupidly, completely forgotten to go for the required preliminary tests to check all is well to continue.  I don’t know why I forgot as I never forget but my brain has most definitely not been engaged to it’s usual level recently.

This was a pain as it meant I had to wait for a few hours for the results to come back before they could start the infusion.  Fortunately I am very lucky to be at a fantastic hospital which has a brand new state of the art outpatient and daypatient centre.  I am shown to my own ‘Cabin’ which is esentially a little room jsut big enough for a ‘trolley’ (bed to you and me) and various bits of essential equipment and a sink. This is brilliant as it is completely private so I just settle in with my Ipod and my book and lounge the day away.

Eventually at 1pm they were able to start treatment.  They had already checked my urine (not pregnant thank God!), inserted the canular (after two painful attempts) given me my single dose of prednisolone and anti histamine (to prevent any reactions) and weighed me (56lbs – no increase thank goodness – have been binging on chocolate a lot recently!).  F, my dedicated nurse (I know! My very own dedicated nurse and this is the NHS, how lucky am I?!), came in, did the usual blood pressure and temperature checks and then proceded to administer the test dose of Inflximab.  All went well and I moved on to the main dose until 30 seconds later…..

I am sitting there munching my way through a large bag of chocolate covered raisins (my new fad) and suddenly feel a little odd.  My breathing seems to be a bit laboured and my legs have started to itch.  I have had an irritating skin condition on my legs for a while now and just assumed this was flaring up a bit so for a few minutes ignored it.  Then I caught a glimpse of myself in the mirror next to the bed and my face and chest were as red as beatroot – clearly this was not right.  I suddenly felt more difficulties breathing and found massive itchy swellings all over my chest, stomach, legs and arms – time to press the nurses bell!

It turns out that yet again I have suffered an adverse reaction to a drug! My immune system really hates me.  I was fine though, they just stopped the infusion, checked me over, administered some more prednisolone and antihistamine intraveneaously and kept an eye on me for a couple of hours.  After about an hour all the breathing probs and itching had stopped and I was fine again.

This was not the day I had planned.  My colitis has been flaring up again in the last week and I was looking forward to the infusion to sort it out.  Clearly, this is not going to happen as I am now no longer able to have this drug.  Supposedly it is a reaction they have now seen a couple of times in patients on their fourth dose but because they have only started using this drug this year they don’t have much else to go on.  The reaction was caused because my body produced antibodies against the drug and were they to administer again I would have a major reaction which would be far to dangerous – so that is the end of that.

I now have to hope that my flare up doesn’t get unmanageable and that I am able to stay well until some new drugs I can try come on the market.  Supposedly there is a new one up for licensing soon which is a proven treatment in Rheumatology but needs licensing for gastro.  However I know that this is not going to happen for me.  I know, in my heart of hearts that I am now on the road to bowel removal and that it is not a case of ‘if’ but a case of ‘when’. However, I am doggedly holding on to a sliver of hope that maybe I will get lucky and my body will suddenly decide to right itself and shove this condition into remission for a long, long time. Until then I shall just have to make the most of the time I am relatively well.

I don’t want surgery, I really don’t but I guess if I have to have it I shall just get on with it and try to keep an open mind.  My biggest concern is not being able to dance again but I know that the reality is that my dancing will give me a reason to recover quickly and the chance to get fit again and I know that I have good enough dance friends now who will help me through such an enourmous change, well, I am pretty sure I know.  If not, I shall just take up line dancing which is a new interest, great fun and requires no contact with others – sorted!

Well, my little man is demanding my attention so I had better shut up and get on.

Bye for now.

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{February 18, 2008}   Catching up

It has been so long since I have written my blog that I couldn’t remember my password! Ooops.

Here now though and feeling in the mood to write something so here I go…

I guess I haven’t written anything because I am feeling well and when I am feeling well I run around like a headless chicken doing this, that and the other and not finding time to sit at the computer and write.  I don’t really have time today but thought I should find the time, mainly inspired by my friend Ali and her resurgence in writing her blog.

So, what can I tell you?  Well, not a lot as far as my UC is concerned, which is definitely a good thing.  I have off days but in general the Infliximab is doing its stuff and working a treat. I now go into hospital for the day every eight weeks to have my infusion and in between times I am on no medication – other than the contraceptive pill.  For the first time in years I am merely on one pill a day as opposed to 20 plus – it is great! So, as far as my UC is concerned there is nothing to tell, I am well and I am making the most of it.

I have felt a bit down at times lately reading Ali’s blog, mainly because her recent experience reminds me that this damn thing can get me again at any time and take my life away again.  No matter how temporarily I really can’t face this happening but rather than dwell on it I am doing my best to ‘cross that bridge when I come to it’.

In the meantime I continue to be a Wife, Mum and am completely mad about dancing still.  I no longer Jive very much, preferring a new dance style I am now dance called West Coast Swing – no doubt I have mentioned this before 🙂  I take classes once/twice a week and then do workshops each month, which are intensive classes for up two hours plus with professionals.  All in all it is brilliant.  I have TONNES to learn but am loving learning it and best of all so is my husband.  He is now mad for West Coast and possibly more into than I am, if indeed that is possible 🙂 Unfortunately we don’t get to dance together out of the house very often due to babysitters but we have already been on one weekender this year and are heading to another very soon.  Dancing definitely helps keep me fit and healthy and most of all very, very happy! Once again, I advocate trying it 🙂

Other than my dancing I do little else outside of the family.  My boys are great, one at school and one at home with me all day and are growing up quicker than I can believe.  I can’t quite get my head around the fact that W is my last and is swiftly heading towards school too. I have been thinking a lot about what I will do when he is not at home with me anymore but have decided I can’t draw any conclusions right now and am going to continue rolling along and just enjoying life as it comes at me.

I am definitely waffling and feel only more waffle coming on so I shall sign off and do something productive with my time!

Bye for now.



et cetera