“The great aim of education is not knowledge but action”

“The great aim of education is not knowledge but action”, said the great British philosopher and sociologist Herbert Spencer, I believe what IBDoc has allowed me to do over the course of the last year is fundamentally educate my self in understanding my disease state. I now have just under a years worth of hard data to discuss with my GI.

One of the cool features with IBDoc is the ability to track ones Calprotectin levels over the course of time. Within the IBDoc app is a great feature, which shows a time line of your Calprotectin levels.

(See figure 1)

 

Figure1

Looking at my data for the year, we can clearly see that I’ve managed, with medication and diet to remain roughly between “ Normal” and “moderate” in fact, the average result over the course of the year was, 140u/ug, I consider this to be satisfactory (apart from the huge spike which was due to me going on a food rampage) as my GI is comfortable with results below 200u/ug.

So what to do with the data? Well, I have a consultation with my GI mid September and this is will be the first time I can present a years worth of data to him, I have no idea how this will inform his decision making. For me, I believe the IBDoc data will be the keystone for my treatment plan moving forward. I consider all my appointments with my GI team important, not least because of the small amount of time one has with the GI and the three-month gaps between appointments.  I believe this appointment justifiably significant; the reason being I have been on Vedolizumab for coming up to two years. My evaluation of its effectiveness over the course of those two years is that I do feel better on the Vedo as appose to just diet (LOFFLEX).

Positively, I have zero side effects on Vedo, no hair loss, no joint pains, no flu like symptoms etc.

Negatively, there has been no real decrease in my fatigue levels or the brain fog, which are my main daily challenges. The Vedo hasn’t allowed me to liberate my diet from the limited foods I can eat safely. So do I stick or twist to another treatment?

What I do know is that even when my Calprotectin levels are in “normal” range, I still feel unwell, as in my previous blogs I discuss the fact I believe I’ve developed many food intolerances. Being able to discuss this food intolerance vs. Crohns symptoms based on the IBDoc data will be an interesting conversation with my GI. 

I will discuss the actions from my GI appointment in my next blog.