24 November 2016

Dr Goodings had been round the previous day and told me that one of the drugs I was being given had stopped working and they wanted to switch over to an immunosuppressant. He made it very clear at this point that this new drug was a “last resort” and if it didn’t work then I would need to have surgery to have my colon removed, but he also said he remaining positive that it wouldn’t come to that, at that point in time. However I had been told from day one that I would need surgery at some point in my life to have my colon removed, but they were just hoping it wouldn’t be for a few years time. I can’t remember how exactly it was explained to me but I was told by several doctors that even if the drugs they tried me on worked, within five years I would definitely need to have the surgery to remove my colon because of the aggressive nature of the disease.

The next drug they were to try me on was called ciclosporin and as previously mentioned, it is an immunosuppressant, that’s mainly given to patients after organ transplants. Immunosuppressants work by preventing the bodies immune system from functioning as well. As UC is an autoimmune disease this means it the bodies immune system that has malfunctioned slightly and is working over time, essentially attacking itself. The desired effect is that by reducing its function, any inflammation caused by this will reduce, therefore bringing the flare up under control. 

I was given the ciclosporin intravenously, and as soon as one bag finished, another was to be connected. I was prescribed 10 bags to start off with and told that the “cut off day” that would determine if I needed surgery or not was the 27th November so from then it was just a waiting game to see if the drug worked.

As the ciclosporin was a last resort drug, I was one step closer to surgery each day. 

Later that afternoon, one of the stoma nurses came round to explain to me in a bit more detail about the surgery, should I need it later that week, but also because it was inevitable I would have the surgery eventually.

stoma-dotAgain, I don’t remember much about seeing Jen for the first time, apart from her flame coloured hair! She was really nice though and explained the surgery to me, and then got me to sit on the edge of my bed and stand up a few times as she looked at my tummy and measured me up. After that she drew a black dot on me where she thought my stoma should go, should I need surgery. She said they do this for patients if surgery is even the slightest possibility in case you need to be taken in as an emergency case. By getting me to stand up and sit down, also by leaning forward she could see the way my tummy would crease and where my stomach muscles were (apparently they’re under the podge somewhere!) 

So that was me all dotted up and ready for surgery. When I looked at my tummy all I could think was “this is it.” I felt like Jack Sparrow in Pirates of the Caribbean : Dead Man’s Chest where Jack ends up with the black dot on his hand, meaning there’s no escaping from the Kraken. Although I tried to remain as positive as possible it felt like this was it, there was no escaping the surgeons now. 

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