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.

Always Waiting......

This blog post is a little late, not great form I know, but one of the common traits of chronic illness I’m sure you are familiar with.

I had initially written about the Christmas period being a minefield for Crohn’s patients but on reflection and a little research I found there are hundreds of blogs regarding this topic. What I want to focus on in this blog and the theme for the following monthly blogs is the mind set of a person with Crohn’s, the daily management and challenges of the disease and the vital relationship management with our respective GI’s teams.

We all like to feel that we are in control of our lives to a certain degree, what I have found to be the one of the biggest challenges with this disease is the complete surrendering of control and the sometimes-passive nature of our involvement of care plans. I like to be involved; I like to be in the driving seat. I have run various businesses since the age of 25; so being in control of certain outcomes is second nature to me. One of the many things I am aware of is the anxiety of waiting: waiting for an appointment to see my GI, waiting for my IBD nurse to call me back, waiting for the results of the torrent of tests required, bloods, MRI, colonoscopies and the realisation that the follow up to these test will take more time. I’m also very mindful that my fantastic GI team don’t have the recourses to be on hand 24/7 so that pain I had felt last night or that extra trip to the loo can’t result in me calling my IBD nurse for reassurances she can’t give me.

Since beginning the IBDoc trial, I have found that my anxiety levels have dramatically decreased; I haven’t felt the need to call the IBD line or prompt my GI secretary to try to move my next appointment up. Of course the reason being is in no small part due to the IBDoc - It has reduced the “waiting time” down to hours instead of days/ weeks, which means I’m not constantly second guessing or monitoring how I feel, which I find mentally exhausting. The reassurances the results provides for me is priceless. For the first time I can actually have a small understanding and control of what’s going on in my bowel with out visits to the MRI scanner!! So, despite ‘cheating’ over the Christmas period with little nibbles of things that are not on my diet I am delighted to report my inflammation levels have not been raised significantly at all. The previous anxiety from past Christmas’ of believing that the calprotectin must be ‘through the roof’ due to the cheating/eating and the guilty cycle us patients get ourselves into has been immense. Not only has this kit provided me with peace of mind that the occasional mince pie won’t render me with short bowel syndrome or whatever my worst imaginings would have been, it also means I can provide the data based on the results and discuss the on-going care plan at my up-coming GI appointment.

Just to finish off this post, I’m going on holiday to the Highlands of Scotland, (I suggest all Crohn’s patients try this part of the world at least once, it provides a deep sense of calm and perspective, for me anyway). Normally I would be getting progressively more anxious around this time as travelling and eating away from my own kitchen spikes my anxiety, however, I am planning to use the I IBDoc before travelling to get an understanding of my Calprotectin levels, and hopefully have an enjoyable trip.

Join me next time to see how the holiday went, along with my latest GI appoint summary.

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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