Oh no! What an absolute disaster, after 10 years of some sort of remission, I am having a full on Crohns disease flare-up, stomach pains, fatigue, nausea, bleeding… If you know you know.
I was going to start this months blog by discussing how well I’ve felt over the last 18 month, what does that mean to me in Crohns disease terms? Well, zero visits to my consultant, zero conversations with my IBD Nurse, less fatigue and no brain fog! Like actually zero brain fog! And finally, Zero trawling through Facebook forums, looking for answers I know I won’t find.
However, if I’m being honest, although I felt the best I’ve felt in years, I had noticed my Calprotectin levels creeping up, “How did you know your Calprotectin
Levels were creeping up if you haven’t seen your consultant for over 18 months”, I hear you shout. The answer is simple; I use a home Calprotectin kit called IBDoc. I’ve written extensively about IBDoc and the life changing impact it’s had on the management of my disease in previous blogs.
This does prompt to the question I think all of us IBDers ask ourselves, “why do I feel so well, if I have no symptoms” Of course, I have no idea why this is the case, I’ve had Calprotectin levels around 70 and felt absolutely awful day-to-day week to week, yet here I am, feeling fine, but with much increased inflammation levels. There’s loads of research around mindfulness, and meditation directed specifically at the gut to reduce symptoms I’ve also been reading lots of papers on CD disease and PTSD, but that’s for another blog.
Back to the flare-up, there are mitigating circumstances around this flare up, first up, and it’s always lurking in my blogs, its my inability to stay on my low residue low fiber diet, I’ve gone from strict compliance to around 70% compliance, which clearly isn’t good enough. Secondly, I believe the immune suppressants I’m on (Vedo) is no longer as affective as it was, these two factors combined resulted in a Calprotectin result of 900, increased urgency, pain in my tummy, that was followed by a temperature of around 39° for a day.
I knew it was time to take action, so now I’m back on the trail of the Lonesome Crohns disease person, ringing my consultant secretary desperate for an appointment, chasing IBD nurses for answers, chasing prescriptions from my GP. I’d honestly forgot how exhausting it was being your own PA when you have a chronic illness
The positives, if there are ever any positives around a flare-up, is that I’m able to test my Calprotectin levels via IBDoc this is a perfect example of how this technology works fantastically well for me. My last call protecting result was 925, after two weeks of being strictly on diet and the introduction of Entocort, my levels are down to 500, I’ll give it another couple of weeks and see where my
Calprotectin levels are again.
You’d think I would have learnt my lesson by now, having CD for over 30 years, two resections and countless amounts of medications, The thing is, I think I’m smarter than my disease, I think I can out run it with diet and drugs, even after 10 years of relative remission, it’s caught up with me, it was always going to catch up on me at some point. I need now to pay it some respect and attention, I have to whether this flare up and get my inflammation under control with new medication, and little patients.
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