Never did I think I would be without any real plan. Never did I see my job being taken away from me from taking “too many” sick days. So you can understand my frustration can’t you? *** So I went into this appointment with very mixed emotions. Needing answers to my questions. Wanting a plan to fixed in place following my scope next month. Leaving feeling reassured that I am…
adventures with a chronic illness
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Clinical Trial vs Surgery
With each step of my disease, I’ve become more and more like a squirrel. I’ve become the hoarder of information. Gathering all the relevant nuggets of advice I can in order to make the best and well informed decision I can. This is no truer that it is right now. I’m having to decide between enrolling on a clinic trial and having a surgery to help aid my Crohn’s disease. I’ve…
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Navigating the ‘Chronic’
Some people would hide away. Some people would happily live denying what’s happening. Some people would keep it all inside. Some people would rather talk about anything but this. And what is “this” when its highlighted, bold, italicised and underlined? A life with a chronic illness. When I was first diagnosed with Crohn’s disease, I was told to not call it chronic. Why? Maybe because at that point, my health…
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This time last year…
.. I was experiencing my first really serious bout of “on-medication-but-feeling-as-if-I’m-going-without”. I had just completed my first year of Infliximab and I’d made it through Christmas. Boyfriend and I had plans to get away for the February break and picked Cornwall for a week’s holiday. I would have my infusion at the start of Feb and that would usually keep me going for at least a month. Oh how foolish…
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XOXO
We sat in the car, driving to the hospital. Nothing unusual in that; we often drive to the hospital. But I sat there wondering why he was so okay with taking me there. When did it become so normal for us to be going there because I had an appointment, needed blood taking, was having a medication given or needed to collect something from my IBD team? When did my…
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Scope booked – oh the dread
FINALLY! After numerous phone calls, I’ve finally received my complete paperwork for my colonoscopy. Pre-assessment on Feb 23rd and procedure on March 8th. So after all this time waiting and then chasing for my appointment, I’m just as eager to get it over and done with. Its never a pleasant experience; which starts with many many cups of prep to get through, the enema on the morning, having a canulla…
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Vedo #5 – The Finale
Despite my best efforts, it seems my current run of Vedolizumab is over. This is what happened at the turn of 2015 into 2016: “I’ve finished my loading doses of my Vedo! That happened two weeks ago and was eventful as always – six attempts at cannulation; two of which were blown veins whose bruised still haven’t faded yet – and I spent 10 days post infusion with pain and…
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Nottingham: Moran and Multiple Choices – 27.01.16
I’ve never seen a different gastroenterologist in a different hospital before. I was full of anxiety and fear of being unable to explain my history to him or to even get him to help me. I was over thinking everything I wanted to say and everything I could possibly say; this one sided conversation with my thoughts and my fears. I’ve had a bad week leading up to my appointment,…
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The end of Biologics: Colorectal Referral – 12.01.16
I’ve had Crohn’s for almost four and a half years but this is the first time I’ve been anxious like this in a very long time. It’s certainly the first time I’ve come face to face with a surgeon. It was nerve wrecking. The judgment of my disease and the awkward chit chat my IBD nurse made whist he read my most recent scopes and scan results – MRI in…