Another milestone moment for me and my Crohns!

Hurrah! It’s my 10th Anniversary and according to Google:

 

‘Traditionally, the 10th year of marriage is marked with tin or aluminium. Both materials represent the durability and flexibility needed to sustain a loving union.’

 

And oh my, have we shown durability and flexibility between us. Not me and my wife of course, no I mean, it’s ten years this weekend that my lifelong partner Crohns re- entered my life, with a bucket full of Chinese wings and a blue light ride to that most exotic of places, Wythenshawe hospital A&E 

 

And that flare up exactly ten years ago changed everything!

 

No more cut and shut, chopping out the diseased part of the bowel, and then crack on with your life. By 2010 the medical profession, dealing with an ever rising occurrence of Crohns disease, had worked out it was better to manage the disease with a whole new raft of medications than hack away at the bowel.

 

And how I miss those days of elective surgery, some days, I just want to get a knife and chop the whole thing out myself and other days, it’s familiarity seems like an old friend (that you never really liked). But no, this time round it’s all been about treatments, since September the 28^th 2010, I’ve tried, 6MP, Azathioprine, Infliximab, LDN, triple antibiotic therapy and the most effective of all the treatments for me is a low residue, low fibre diet.

 

It’s still a journey. One of those like when you climb to the top of the mountain, quietly congratulating yourself, then you discover there’s another peak, and another peak and another…………

 

But you know you just got to keep going, this time around, armed with IBDoc, which again has been such a useful tool in lock down, as I haven’t seen my consultant since last February, however, I have seven months of IBDoc data, so I’m comfortable with the wait. And as things are shaping up with the pandemic, it looks like we’re in for the long haul! 

Follow me on Twitter @ibdocMe

www.calprotectin.co.uk

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

 

28 Years of Lockdown

My own personal lockdown

 

My own personal lockdown didn’t begin at the start of April 2020; it started in August 1992, when I was first diagnosed with CD. I’ve been in and out of “lockdown” many times since in my 28 years with CD. So I’m well versed in what’s required to sit and wait it out.

 

The difference this time is that just about everyone worldwide is feeling  a few of the emotions and suffering we chronically ill people experience on a daily basis. I don’t want to sound glib or come across as smug, as here in the UK 28,000 people have lost their lives to COVID19 so far.

 

 We all now have a shared experience of the suffering: not being able to meet up with friends, plan a holiday, worry about health, anxious about finances or eating out to name a few.  The difference for the chronically ill is our suffering will not end when the lockdown is lifted, we will still be in the same situation as before lockdown, except this time the future is more uncertain. We have no idea what lifting the lockdown means for a person with a compromised immune system, it just adds anxiety on top of the daily anxiety we already feel.

 

To add to the anxiety, I have had to go to hospital amidst a global pandemic; to the heart of the beast if you will, for my usual monthly Vedo infusions. I have made the trip to hospital twice since lockdown and both times in all honesty it petrified me. I felt a general since of unease with the nurses and staff on the ward, and being asked to wear a face mask whist the infusions takes place makes it very real for me.

 

I do however, feel incredibly lucky for a few reasons; first, as chronically ill people living in the UK, we know just how selfless, understanding and professional our NHS staff is, from the Doctors to Nurses to ward clarkes and porters, they are in my experience incredible. So I will be clapping every Thursday evening, but the truth is I’ve been quietly clapping for them for the last 28 years.

 

I’m also incredibly lucky to be able to test my Calprotectin levels at home via IBDoc. If there are positives to come out of this awful pandemic is the doctor/patient relationship, as I’ve pointed out in my previous blogs we need to grab hold of the tech at our disposal, and use it to our advantage. Of course there is no comparison to meeting face to face with your GI but imagine the time, money and effort we can save using Skype, Zoom or Team sessions. Or implementing the use of home Calprotectin tests? As I said I’m lucky I can test Calprotectin at home. My last result using the IBDoc was 38 ug/g so zero anxieties and I’m not badgering the IBD nurse and going out of my mind with worry at every little twinge in my tummy.

 

I’m also so grateful to my wife, who without hesitation and putting her own safety at risk will wait in line at the supermarket then travel across town to pick up my prescription.  

 

I don’t know what the future will be like in a post COVID world  living with IBD. What I do hope is we can use this experience to be more understanding of the chronically ill, and our front-line workers, maybe being a little more kind to the people less well off then ourselves.

 

Stay safe.

Follow me on Twitter @ibdocMe

www.calprotectin.co.uk

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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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