The Pay Off

As I write this month’s blog, I’m in pain! To give you an idea, I have hot, aching pains running down my arms to my fingertips. I have the same pain from my hips to my knees, on the inside of my legs and ending finally at my toes. All my joints feel static, like they’ve not moved in years. Even my eyeballs feel like a heavy load. The fatigue running in tandem with the pain is overwhelming, the nausea and bloating is uncomfortable to say the least, and finally, the brain fog makes it extremely hard to focus on anything at all.

Based on the above symptoms, one could conclude I am having a massive flare up, and a trip to the local A+E department will be imminent. 

However, there are mitigating circumstances to these woeful symptoms. I’ll get back to that shortly, first, a little background. Over the last eight years, I have followed the LOFFLEX diet, (Google it) which means I have had more or less the exact same food daily for eight years! Imagine that for a second…. the same food for breakfast, lunch and dinner every day for the last eight years!! The positives of this diet are marvelous! No abdominal pain, no urgency to find a toilet, in fact, my toilet routine isn’t that complex. Once a day! And finally the diet has kept me from any further surgeries. So lots to be grateful for, right?  Well I guess so; one only needs to read a Crohns blog to understand how grateful I should be.

The negatives of the diet are simple, I think constantly about the foods I cannot eat. I wake up thinking about the foods I cannot eat and go to bed thinking about the foods I cannot eat. The level of discipline required for staying on diet, I simply do not have. This takes me back to the mitigating circumstances, over the course of last weekend, I gave in to my food urges, which included a full English breakfast, I ate out for lunch and decided on curry for dinner. I know, shocking isn’t it? The day after, the symptoms I describe above began to take shape. At this point I’m starting to feel the guilt. What was I thinking? How stupid of me to think I could get away with eating “normal” foods without suffering the usual symptoms.

Based on the symptoms I decided to check my Calprotectin levels using IBDoc. I was sure I would see a massive spike in my results and feel even more guilty and anxious about my indulgent weekend. However, the result was an unexpected 75u/ug. This suggests a few things; notably, the monthly Vedolizumab infusions are keeping the inflammation down to a minimum, which is fantastic news. The down side is I have developed multiple food intolerances which result in these awful symptoms.

To conclude, I am very fortunate to have the ability to check my Calprotectin levels using IBDoc. I can imagine a time in the near future where this tech is available in every Crohns sufferer’s home. I’m also fortunate to have a diet that keeps me in this form of remission, but also having the ability to go off diet occasionally. The pay-off being the above symptoms. It’s a daily struggle. I do have to remind myself that I do indeed have this nasty disease. I’m in the process of working with a dietitian to see if I can liberate my limited diet, being able to show the dietitian the data from my IBDoc will be a valuable resource. I will keep you updated on my progress.

The next hurdle…getting through Easter!!

The pessimistic optimist

I’m not by nature an optimist; Optimism was never the go to position for my family. Growing up as a Manchester City football supporter in the 80’s sealed my fate as the glass half empty sort of chap. As well as my boundless pessimism, I also have the misfortune of being dyslexic, with a particular problem with the letters B and D. The Irony is not lost on the fact that I have a condition that fits neatly under the banner of “IBD”

What’s a dyslexic pessimist got to do with a blog about Crohn’s Disease and using IBDoc? Well, I’m just pointing out that we’re all human, full of faults. But tech doesn’t care if I’m dyslexic, or if I’m having a bad day (yet) or if I’m anxious about the state of my Crohn’s. It’s prime function is to offer me a result, a line in the sand. What the result translates to me is, consistency, legitimacy and most importantly peace of mind.

So in reference to blog three, IBDoc is easy to use and reliable and on this month’s particular occasion I opened the now familiar cartridge and followed the instructions as usual, after applying the sample to the test cassette I was then ready to hit the twelve minute timer within the app, but  – oh no – I couldn’t? I haven’t? I didn’t?

I’d somehow managed to log myself out of the App. Luckily, I had my login details to hand, but that’s the point I nearly messed up and it’s a cautionary note for future users to have that stuff to hand just in case, as we are the ones likely to make the error not the tech.

So, having reflected on my experience of this tech, I think both the hardware and software application are truly outstanding, which is reflected in its ease of use and consistency, particularly in context of Crohn’s disease, which always seems to be in a state of flux.

So what were these latest, nearly lost to human error results?

The results were, less dramatically, within the same range as the last three tests, which for reference is between 70ug/g and 115ug/g. Having the tech to test my Calprotectin levels over the course of Christmas and a recent holiday, with all the eating out and occasional afternoon tea. I can conclude the monthly Vedolizumab infusions are having quite a profound effect on keeping my Crohn’s in check. My consultant giving me his consent to trial IBDoc back in October 2017, and at my last appoint in late February 2018, my GI was very interested to learn of the results from four months of using IBDoc and appears happy to see my Calprotectin levels below 200ug/g.

We are living in an age where tech can offer the end user so many possibilities, no matter how flawed the end user happens to be. So I am beginning to see IBDoc is genuinely offering me an almost real time monitoring of my disease. And that’s a bold statement for a pessimist.

Please feel free to ask any questions or leave feedback.