This is part two of my Crohns disaster blog, as I write I’m feeling the familiar side effect of entocort, I have developed oral thrush (nice) my tongue feels like I have been rubbing it on coarse sandpaper, which in turn means eating anything is a form of gastronomic torture, along with the cracks either side of my mouth, the head aches, nausea, and low mood, I think I may have a full house of entocort side effects, Bingo!!
I had forgotten about my dysfunctional relationship with steroids, it’s not dissimilar to Russian roulette, if we see Crohn’s as the loaded gun, and steroids as the barrel that’s furiously spinning, sooner or later the game will be up.BI know the steroids offer me protection from a flare up, which in turn means I can vary my diet, I can eat out, I can have a little spontaneity in my life rather than making a flask of food to be taken with me everywhere I go.
The steroids offer me a false dawn - they tell me that I can have a ‘normal life, I can eat out when ever and where ever I want, they tell me that my energy levels will continue, at this pace, they comfort me with the promise that, I will always feel this good. However, that game of Russian roulette begins in earnest, reducing the steroids is loading the gun, the side effects kicking in is me spinning the gun barrel. This is where I put the gun down and come to my senses. I have just enough will power to throw myself back on to my rigid diet, and accept that fact I was only ever on day visits to the land of the normal people and that I need to get my act together and treat this disease as it is and always has been; a serious, life long chronic illness.
So, enough with the crazy analogies - I do have some quite interesting news. It all started with a phone call to my landline, I don’t know about you, but these days when my landline rings, it’s usually some poor soul trying to either tell me I was in a car accident, sell me green energy, or an automated system telling me my Amazon membership is up and I should handover all my passwords. For your reference, please don’t handover any of your Amazon details.
So the phone rings, I answer it with my usual indifference, however, this call was different, and this time it was my consultant. MY ACTUAL CONSULTANT!! I had to move fast from my deeply annoyed state, to my professional Crohn’s patient self, which I managed to do quite effortlessly.
I know what you’re thinking; your consultant rang you on your landline? What kind of trickery is this? An NHS consultant using modernish technology to speak to his patients? Well I can assure you that’s exactly what happened, in fact, not only did my consultant call me on my landline, he delivered me the plan for moving from Vedolizumab to Sterala, and I don’t have to wait three months for the washout period, which would have resulted in a definite flare up, I can begin the loading doses of sterala in the coming weeks.
I was so flabbergasted by this communication, I wanted to tell everybody in the house of this exceptional conversation, unfortunately, there wasn’t anybody home, I did try and tell the UPS delivery driver who rapped on my door just as I realized I was the only one home, but he was in a UPS hurry! His loss….
So, once again, I find myself on the Crohns carrousel of steroids, loading doses, blood tests, and landline conversations!!
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