This week has been brought to you by the letter 'W'

'W' as in 'Weird' and 'Whaaaaaa?'. Pretty much sums up how things have been in our household for the past week.

On Wednesday this week, I realised that I have a chronic disease. One that will never, ever go away and one I will do battle with all my life. I was diagnosed with Crohn's over 6 years ago so you could surmise from this that I am far from a quick learner and/ or a little dim but bear with me!

Tuesday morning I woke up focused but numb; it was time for the annual MIR. As I am sure most of you reading these rambling will have an IBD of some kind, I am sure you will be familiar with the process and, if you are lucky, will not be scared witless by it!

Now, irrational fears are common place; many people are afraid of spiders, bugs and inanimate objects like zips and beards (true fact; its called Pogonophobia). My irrational fear is of a giant, clanking, humming magnet. One that, in this instance, went by the name of Tim. That's right, they named the buzzing behemoth Tim. Ironically the same name as my boss, who probably could do with being able to instil the same level of fear.

The same irony was not lost on MH (the man in my life who, after the events of the past month have earnt him the permenant title 'My Hero' and shall, from here on in, be referred to as such) who took great joy in pointing that out, along with worrying about the chances of having been in an accident that could have left tiny shards of metal in his eyes. Which was a lovely thought to have. When your head is about 2 cm away from a giant magnet. Brilliant.

If you are having or are about to have an MRI, there are some things that you may not know:

• It is not MANDATORY to listen to Radio 1. This may come as relief to some of you. I feel restricted by the headphones and being drip fed Chris Moyles; it all adds to my irrational panic, so cotton wool in the ears (that's right, the comic books of old were right!) is a better alternative for me when it comes to dulling down the German techno beats the machine generates. 
• As the scan is focused largely on the pelvic area, you don't have to go in head first, winner. 
• You can have a nominated hand holder come into the MRI room with you, provided they do not have any metal in their bodies, there is no chance that they could be pregnant and have no heart condition. As MH works with Coffee (greatly reducing the chances of an industrial accident pinging shards of metal into his body, despite his fears), is a man and has the heart of a ox, he holds this position.
• Contrast dye is common place and used to highlight the magnetic differences in the softer tissue areas (MH is also a physicist so to have an MRI with him on board is a very educational experience!) and the running around after it is administered is normal as the dye works super-quick and they have a narrow time frame to work with. Alas, the dye combined with massive magnetic charges has yet to imbibe me with X-Men type powers. Boo. 
• Deep, yoga style breathing (short breaths in, holding the breath for a few counts, slowly exhale) helps me to stay a bit calmer but, more importantly, helps me to soothe my shakes (part fear, part adrenalin) so that the picture won't come out blurry. 
• If you do find MRI's stressful, as I do, give yourself time to recover afterwards. As a good friend explained to me,  it is a traumatic experience for some people, so let yourself come down from it, give yourself and your appointed hand-holder some TLC and a chance to absorb the experience. 
• You can get Valium from you GP to help keep calm, but the timing is a little difficult. I managed this one without meds but that last time I had Valium, it only started to work 2 hrs later when I was enjoying the aforesaid mentioned time out with MH and nearly fell of a stool in a friends coffee shop. I looked like a drunk! 

You may be wondering how I can go through all this and not really have the realisation that I have a chronic disease. I shall try to explain further.

I have so far managed my Crohn's thus far through constructive denial. True, I manage on a daily basis with meds. A pantheon, no less, over the past 6 years including:

• Asacol
• A variety of steroids
• Azathioprine (still on daily)
• Infliximab (taken intravenously for one year, but no more!)
• Adalimumab (epi-pen style shots, two every two weeks into the fatty part of the thigh. Apart from when I miss and get the muscle. Ow)

And when I say manage... I also suffer from fistula. Nasty ones. A spaghetti junction of  fistula if you will. With the Crohn's itself, I manage what I eat. I know what triggers to look out for, I know to make mental notes of where toilets are in any new place and I know that exercise and plenty of joy in my life are the key to my health. But the fistula, these are the true nemesis. 

The very nature of Crohn's means it is all internal and, to a larger extent, I have been able to hide it away, so to speak, and carry on regardless. But the fistula are my daily reminder. The hurt and discharge (Nice! Another side affect of Crohn's is associating yourself and your bodily functions with words you NEVER wanted to hear used to describe any aspect of your anatomy!) and the hospitalisation due to chronic and widespread infection are a very outward sign of what is going on inside. 

And thus the culmination of this first post. My fistula have gone critical. Code red people, code red. As the Prof said (my specialist) it's not really a good sign when your MRI results come through in time for your clinic appointment. Which is the day after. At 9am. And they are marked urgent. Gulp.

A review of the results came along and diagrams were scribbled on bits of paper in biro that were supposed to represent important parts of my physiology. All the while sympathetic looks were provided courtesy of the lovely IDB nurse. Then the 'S' words were mentioned. Surgery. Stoma. (Actually is was 'Poo bag' which I baulked at slightly. I know the proper word, please use it!).

Then, I have to say, I stopped listening. Crap. My body is broken. Bugger. All the denial of the last 6 years and the 'management' have brought me here. To a point I was weirdly unprepared for. How do I manage it now? The proposal of surgery and the resulting stoma is a situation that I cannot control, am not resolved to and have no survival mechanic for. Gah.

So what happens next?