Nice Pudding?

So this is it! The journey begins. My excitement is palpable; I have in front of me BÜHLMANN IBDoc^®. For the fist time in my 25-year career as a Crohns patient I have the means to test my inflammation levels in the comfort of my own home. No hospital car parks to navigate, no more anxious sweaty palms waiting for hours on end for my name to be called out by the consultant, finally and most importantly, I no longer have to wait a week or two playing phone tag with the IBD nurse over the phone for results. I am master of my own ship, the good ship Calprotectin and this marvelous device known simply as IBDoc

I’m not quite sure what I was expecting in terms of unboxing IBDoc. It turns out that most of the magic is in the tech i.e. the App, which is called the IBDoc Cal App, I downloaded it from the app store and installed it on to my iPhone 6s.

For reference you will need a password and access to the portal, which you will get, from your clinic if they are using the IBDoc without this initial set up its pointless downloading the app. I will get back to the road testing of the app, but first… What’s in the box?

  

Each kit comes self-contained in a sealed package, within the package there are

·      Two collection papers (for collecting the stool)

·      One CALEX® valve device for extracting the Calprotectin from your stool sample

·      One sealed test cassette

·      One card used to test the camera on your phone and also used as a background for the reading of the cassette.

·    

So what’s the best use of this amazing technology? In my previous blog I said I have been eating rice, chicken and carrots for so long my body seems to react to anything new I put in it. The obvious route now was a full re-introduction of food groups back into my diet. But are they causing inflammation or have I developed intolerances? 

My wife and I have a running joke about my ability to tolerate certain food groups, so what better way to settle an age-old argument…Can I eat dairy? Well definitely not butter. I was nausea and sick within days of testing butter.

So how about in this case, Rice pudding, which contains full creamed milk, rice and sugar.

Over the course of four days I steadily increased my intake of rice pudding, in terms of symptoms, they were negligible initially, then I began to feel a little nauseous and bloated but no increase in BM’s or pain, so as usual I had no idea what was going on.

With this information I was excitedly ready for my first test using IBDoc. The first action was to collect the stool sample, its best to collect the first stool of the day, for reference I have zero problem with this part and I’m quite sure most people with Crohns disease get used to being prodded poked and asked for many samples! Using the collection paper provided was a breeze On opening the CALEX® valve device you simply collect samples by dipping the pin into the stool five times so that stool completely covers the grooves on the end of the pin, once the sample is collected pop the pin back into the CALEX® valve device and give it a shake. It’s that simple.

Once the sample is collected its best to leave it for a few hours at room temperature but away from direct sunlight. I’d actually forgot all about the test while I was at work but on returning home I was eager to begin the next part of the test. I first logged into the IBDoc app, the app then simply prompts you to use the card provided to test the camera on your phone, the images takes automatically and the app tells you the camera pasted the test. You then take the blue cap off the bottom of the CALEX® valve device and place this in the circular hole in the cassette and turn the lever to release the liquid. You then set the timer within the app, which is approximately twelve minutes. It’s very much like using a pregnancy test as you wait for a line to appear to tell you the test is correct. The second line that appears is the level of Calprotectin, a faint line indicates lower levels of Calprotectin and a darker line indicates higher levels.. Once the alarm goes off, you place the cassette on the card provided then place the camera phone over the image, once the five circles light up green the results appear! You can then save the results along with notes regarding the test, this information is then sent to your clinic. How amazing is that?

What are the results? I hear you cry; Before I began the test I did was lucky enough to have a Calprotectin test done by my GI which came back at 70ug/u. I was happy to use this result as the basis for further food testing as I had been strictly on my diet for at least a month. Well it appears that eating rice pudding over the course of five days does raise my Calprotectin levels to 101 ug/g. previously when I have tested almonds as an example my Calprotectin results shot up to 950 ug/g. The significance of this result means that I can occasionally eat rice pudding without the fear or anxiety of the unknown.

No matter how amazing the technology is there are a whole host of variables of what this result means to me, as an example, I have had this disease for twenty-five years, I use the LOFFLEX diet and Vedolizumab to control my disease, I’ve previously had two resections, including removal of my ileocecal valve which means I have SIBO. So who knows what exactly is going on? IBDoc is one powerful tool in my tool kit and as I go through this journey there are so many variables to consider, I’m not expecting IBDoc  to provide the answers to everything, I am expecting it to contribute significantly to the management of this disease.

Crohns disease is a physical condition, we know that of course, However one can not underestimate the mental pressures this disease presents, having the ability via IBDoc  to assesses the levels of inflammation from home is a complete game changer for myself. After eating such a limited diet for many years I am to a larger extent in control of my disease, being able to take control to the next level using IBDoc  is nothing more than miraculous.

In summary IBDoc is incredibly intuitive and easy to use, the App is laid out well and the prompts it provides means one can’t really go wrong.

I do hope you enjoyed this episode of the blog and do keep on following my progress as my next Blog will be focused on the not so “most wonderful time of the year” when you’re battling Crohn’s, surround by food you can’t eat…. Or can you? 

Crohn's Disease me and IBDoc

I am a 48 year old male living in the Manchester metropolis UK. I have two beautiful children, an incredible wife and a loving, close family. I have had the misfortune of having Crohns disease for the last 25 years; I have had two resections, the first resection in 1992, and the second in 2001. I was in remission for 9 years until a severe flare in September 2010, since that date I have been battling this disease, physically, mentally and emotionally.

I have tried steroids, helminths, azathioprine, 6mp, biologicals, anti-map, LDN … you name it …but the side effects have most often outweighed the results. 

The most successful tool which I  keep returning to is control by diet, this takes incredible will power to stick to and monitor.

On the quest to control my Crohns disease through diet, I have used calprotectin tests to effectively monitor my Crohns symptoms over the years. I was fortunate to work with Prof Hunter for three years who first introduced me to the calprotectin test via a clinic in London. 

I learnt some fundamental pointers about my disease activity:

-       I was well (ish) if I could keep my calprotectin to 50ug/g – 250 ug/g

-       If I introduced a food over a week that created inflammation in my gut the calprotectin would shoot up to over 1000 ug/g

-        If I stuck to my diet rigidly it would drop back down to 70 ug/g and If I kept ‘cheating’ here and there I would receive results around the 800 ug/g

For me this kind of data is invaluable and reduces the anxiety of not knowing if you are making your condition worse, which can be a significant part of having IBD.

Every month or so I would send a sample to the labs and a week later I would have a result that I could act on. The actual clinic could turn the results around in forty-eight hours but posting it to London added an extra day. The real time delay of process though, was the administration; the results going to the professor, then to my GP, and eventually to me. 

Now when I do a calprotectin test (currently managing via diet and vedolizumab), assuming I can get the Calprotectin to as low as 50 ug/g I know I am not increasing the length of inflammation in the bowel.  It is through this deep understanding of my individual Calprotectin results I am confident that the Crohns remains contained to a specific length of bowel and hasn’t increased now for over five years. So I need to stick with the diet but I do need to introduce more foods.

I have been on a very basic LOFFLEX diet of rice, chicken and carrots; every time I introduced a food I would have to report back to the dietician every six weeks but it was just too long to achieve sensible conclusions.

So last year I wrote an impassioned article for Alpha Laboratories, Autumn Winter addition of Perspective, which was published with the headline ‘IBDoc will change people’s lives but only, if patients can monitor instant results’. I had been prompted to write the article on hearing of the inflammatory detection system via calprotectin being developed as a home testing kit called IBDoc and then had been instantly disillusioned on hearing that my clinic did not administer it so I could not access it.

As with many fellow IBD sufferers I have a determination and resolve to breakthrough the admin barriers to get results and I am delighted to report I now have a kit and twelve precious cartridges to do my own home testing.

I have been eating rice, chicken and carrots for so long my body seems to react to anything new I put in it. The obvious route now is a full re-introduction of food groups back into my diet. But are they causing inflammation or have I developed intolerances? 

It’s the great unknown. 

But…I think I can work this out with the IBDoc and I know I can share my results for the next twelve months in the interests of finding a way for us all to better manage our disease.

Its late October 2017, it’s a beautiful autumn day, I’m sat in a café writing my first blog, I’m still here! I’m still battling this disease but if I can use IBDoc to keep it under control there’s a chance I can enjoy my life and that would be just perfect.

If you fancy joining me on this research journey I’ll be posting monthly so follow my blog and let’s see if we can get some results.

www.calprotectin.co.uk

https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing

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