Time seems to be slipping through my fingers – someone today told me it was only 14 weeks till Christmas.  Its days like today that I want to grab and hold on to every second – every minute that I am not sick is a perfect one.

Monday was D-day.  Monday I started a new treatment – Azathioprine, my dosage is called “Imuran” and its used specifically to treat Crohns Disease, Ulcerative Colitis and Arthritis.  I was not keen on switching from the Budesonide seeing as I’d been doing so well on it.  That’s the blessing and the curse.  It makes you feel like you can take on the disease – then the doctors take it away as it slowly and silently destroys your bone density.  If it works with your body, you can stay on Imuran long term – they suggest Crohns patients stay on it permanently.  Imuran isn’t without its drawbacks.  It is an Immunosuppresant – its soul purpose is to compromise the immune system of people with autoimmune disease – like Crohns.

My specialist had spent the last 6 weeks talking me into the switch – he’d taken it slowly.  I suppose that’s because he could see how clearly uncomfortable I was with the idea of taking a drug that was going to weaken my immune system.  He had pushed back the start date at my last visit so I could get the second dose of Gardisil – the HPV vaccination.  I went in on Monday – fully aware of what the results of the consultation would be.  One thing I didn’t expect to be told was that my last flare up wasn’t in fact a flare up – it was just the combination of Indian food and Iron supplements.  I am still up until right now – flare up free…. I haven’t had a flare up since the 12^th of June – we are past the 3-month mark and I am more than willing to concede that the Entocort is the reason.  The rest was pretty standard… he reminded me about the weekly blood screening, the hair loss and the list of reactions and side effects.  And for the third time he reinterated the importance of continuing with conventional medicine.  The benefits are the only thing pushing me into a treatment I don’t want to pursue.  If I can continue to take Imuran – it lower the risk of surgery by a further 60%.

After receiving all of my (free) blood test referrals, booking in for 4 weeks time and saying goodbye to all the staff who are beginning to see me as a regular, I went down to the hospital pharmacy to collect the small orange tables that were, one way or another, going to change my life.  I waited for 40 minutes.  They’d closed all the access windows and I had started to get conserned that they had all left without dispensing my medication.  Just as I was about to knock on the staff only door the head phamasist came trotting out with my brown paper bag full of medication.  Before I could be relieved, she announced in front of all the people still at that station that I was on Chemotherapy.  There’s one of those facts, that I would consider quite important, which he forgot to tell me.  I remember just standing there – mouth open blinking at the woman who thrust the paper bag into my unwilling hands.  She went on to say that I wasn’t actually allowed to touch the drugs…. To which I promptly replied “so let me get this straight, you want me to swallow these tables – but they are so poisonous that I can’t touch them – right”.  She told me that Imuran was quite safe and there are many people who take it religiously – but obviously they don’t touch it with their hands.  I walked away mortified – my medication had more warning stickers on it that rat bait – and this was the best case scenario?  Where the hell has medicine gone wrong when the best case scenario is to kill off someone’s immune system with a drug that they expect you to swallow – but you can’t touch it.  This week has defiantly been one I have wished I could go back to not knowing about my condition.  I have wished repeatedly that I had of just kept carrying on like I had for the previous 10 years….   Where would I have been if I had of never gone to the doctor and forced him into the diagnosis?  I could have quite easily died from bowel rupture… so fair enough, being treated responsibly is better than being dead – but still……. I wish I could crawl back into my little shell of ignorance.  My specialist stressed that whatever this drug could do to me is nothing compared to what active Crohns could do to me… and I would have to say that at this early stage I agree.

My first blood screening was on Friday – my nurse was sick – not a good look for someone who is at the beginning of a treatment whos soul purpose is to basically stop my immune system from working… Here I am on Saturday night though – feeling as well as can be expected after spending the whole week wondering if I should ring Endoscopy over every little pang my body has given off.  I wonder if everyone starting Imuran feels the same… I wonder if everyone spends the first 5 months of the treatment on knifes edge?  Stocker is beside himself too and more convinced than ever that helminthic therapy is the way to move forward…. I don’t think I would be disagreeing with him with so much vigour if had the money.  Hell I’d be happy if we had the money to purchase new tyres for our cars.  Financial fail.  We might not be wondering where our next meal is coming from anymore – but times are still hard.  We are both applying for jobs in the hopes we will jag one which pays more… so we can stop living off spaghetti bolognaise and sausages…. Everyone keeps telling us its just this first year that’s going to suck – I hope that’s true…

Tomorrow we are off to a wedding, I was really looking forward to it – until yesterday morning when I woke up with a face full of acne and eczema all over my arms…. I look like something out of a horror movie… My family paid for me to get my hair cut and coloured (for my birthday), Stocker said that no one will be looking at my face anyway – I really wish that were the truth… I am more self-conscious than ever – and for the life of me I can’t figure out which medication is doing the damage… not that I could stop taking it even if I knew which one it was… God listen to me would you… I sound so pretentious and shallow.  I guess the only thing I really wanted was to look health tomorrow, the last week has made me wonder if I will ever look healthy again.

All I can do is be proud that I have had the guts to start my Chemo and front up tomorrow looking like a bombs gone off inside me.

My first week of Imuran is nearly over – and I still feel fairly normal (as normal as you can feel with Crohns Disease)… I hope that this works, but at the same time I hope it doesn’t and there is another way…