Monday 20 November 2017

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 cafĂ© 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.

1 comment:

  1. Hello,
    Very interesting blog. I take injections Methylcobalamine which seems to have a positive effect on Crohns disease that I have for 30 years now. Never the less I have still much too high results of Calprotectin. Also suffer from food intolerances. Thanks. Pete (The Netherlands).