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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The good the bad and the ugly

This is my first blog post of 2020; I have good news and bad news.

The good new first. Last year was a good year, an actual good year!!! I felt generally well enough to actually enjoy living life, as a family we were lucky enough to go on several mini city breaks including a week in the Scottish highlands. The consequences of enjoying life and sampling foods on holiday meant my Calprotectin results have not been under 100ug/g for that year, so how bad were they?

Well, significantly. I carried the holiday spirit with me into day-to-day life, nibble some chocolate here, couldn’t resist some butter on my rice cakes there, and the odd Saturday night takeaway.

I know that Vedolizumab has its limitations, it doesn’t work for me in isolation - I have the “diet” too. The Calprotectin level doesn’t shoot right up anymore, by right up I mean over 450 ug/g When those higher values actually start presenting physically, ulcers, bloating, pains and tightness in my abdomen, well I just reign it in, get back on that diet, strictly adhere to it for a week or so and then safely and happily confirm I’m back on top of things. Then start ‘slipping’ off the diet again and the cheating creeps up. And so the cycle goes on. I always feel a huge sense of guilt when I have cheated on the diet, and anyway, consecutive days of cheating makes me feel physically dreadful, I believe that’s down to the food intolerances rather than the Crohns. So I’ve been in this boom and bust cycle for the last eight years.

Which leads me to the million-dollar question! What a positive Calprotectin result actually looks like in terms of inflammation, ulceration and structuring in the small bowel. Here’s the bad news. I had the opportunity to understand those IBDoc results I have been capturing for the last two years as I had the dreaded colonoscopy in December of last year. A couple days before the colonoscopy I used an IBDoc kit to measure my Calprotectin (of course why wouldn’t I) the result of that test was 360ug/g. So what does the inside of my small bowel actually look like, I hear you shout!!

Ok, so I received the follow up letter from my consultant out lining my recent colonoscopy. In the letter it states that my small bowel showed signs of mild ulceration and the biopsies and blood work taken also showed signs of inflammation. In the letter my consultant was keen for me to switch from Vedolizumab and begin a new medication called Sterala. Interestingly I wasn’t shocked by the results of the colonoscopy, as I have year’s worth of data from IBDoc that confirmed the colonoscopy results. I was of course disappointed that I would have to begin another medication with all the side effects, loading doses etc.

So armed with my research on Sterala and of course my agenda for the meeting I was ready to go, if not a little nervous, but to be honest I’m always nervous when I see my consultant. I’d based my agenda notes and questions around me transferring from Vedolizumab to Sterala, however, in the meeting with my consultant I was surprised he was reluctant to switch my medication as he could clearly see I’d gained weight - I wasn’t suffering with urgency, bowel pain and no extra intestinal manifestations. My consultant asked me how I was feeling on a day-to-day basis; I told him that I feel good; in fact I’ve probably felt the best since my flare up in 2010. Based on that and after a little head scratching he suggested we go for another four months on the Vedoluzimab with the option of switching to Sterala if my symptoms present.

I think what today has taught me is, there is no running away for this disease, no short cuts or miracle cures, I know I have the ability to control my Crohns with diet and Vedoluzimab and lucky enough to be using IBDoc to monitor my inflammation, I simply need to redouble my efforts and not be tempted by foods I know will be detrimental, which is easier said than done.

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

The drugs do work

Back in 2017 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. If you follow my blog you’ll know that I have been successfully using IBDoc since then.

I guess I’ve been somewhat evangelical about IBDoc; I still can’t believe how fortunate I’ve been to be allowed to trial it and to write about my experiences of using it in the field.

In my previous blogs, I’ve expressed that IBDoc is one part of the tool kit I use to deal with my Crohns disease. It’s at the centre of my Crohns universe with all the other tools orbiting around it, making them more than the sum of their parts. IBDoc is a consistent level control which gives me a snapshot of where I am at any one time.

To give the results some context: last October I had an MRI of the small-bowel, the results from the MRI came back as clear, zero inflammation. Out of interest I did a test using IBDoc on the morning of the scan, the results of that test (50ug/g) were consistent with the MRI scan result, zero information.

Having the ability to self-test has many positive outcomes not least to pose the question, is the medication I’m on working? If so how well is it working?

For reference I have been having monthly infusion of Vedolizumab since November 2016.Vedolizumab works by preventing an excess of white blood cells from entering into the GI tract. This helps to control inflammation and symptoms of ulcerative colitis and Crohns.

So what’s the conclusion? Well, armed with two years of IBDoc data, I know, undoubtedly that the monthly Vedolizumab infusions keep my Calprotectin levels below 100 ug/g. When I do go off diet, on holiday as an example, eating what I want (I know, how dare I) the Calprotectin levels will increase up to 400ug/g.  Pre Vedolizumab my Calprotectin levels would sometimes peak around 1000 ug/g.

And that’s why I can safely say. “The drugs do work”

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

The one question a Crohn’s sufferer wants to hear

We know that living with IBD is a challenge to say the least; just a few of the symptoms that manifest are, weight loss during flare-ups and gaining it all back when in remission, running to the toilet every two minutes, crippling fatigue and intense pain; lets face it the list can be endless.

So certain comments - such as those that focus on weight, looks, diet and perceived attitudes can be really upsetting and hurtful. We have to calmly educate our friends and family as to why we didn’t attend that wedding or couldn’t make our nephews 21^st; here are a few examples I have encountered in my 28 years of having CD.

You looked fine last week, what’s the problem?

Despite my illness I still want to lead as normal a life as possible. It is often a real challenge to do the things that healthy people take for granted like, going on holiday, meeting up with friends for a drink and catch up, or going for a long walk….. you get the idea? Even when I feel moderately well it’s still a challenge to do these activities, but I guess most people like myself with IBD just put on a brave face and get on with it. I wouldn’t expect my friends or family to know that I’m dealing with terrible fatigue, or I’d been up most of the night on the toilet but when I point it out I don’t want to have to discuss the point.

I wish I could eat anything and stay slim

I’ve had this said to me many times in my 28 years of CD. Seeing yourself literally fading away when peering into the mirror during a flare can be devastating so this comment particularly hurts as weight loss is often due to flare-ups that cause severe abdominal pain with bloody diarrhoea that can mean spending most of the time in the bathroom.

My friend has CD and he’s doing great

I hear this one often, its usually followed by me being told that their friend with CD has just completed a marathon. Unfortunately, IBD affects everyone in a completely different way in its severity. It also depends where the inflammation presents, and what medication you are on or if you have had previous surgeries.

Why are you so tired all the time?

Its wrong to compare feeling tired after work and having chronic fatigue due to CD. There are many reasons why IBD effects your energy levels, this can be due to low iron or B12, having limited sleep due to visiting the toilet all night.

My friend has CD and she can drink alcohol.

Maybe it’s a UK thing? But I find people can get very suspicious of folk that don’t drink alcohol. For me, alcohol is a complete no go, it gives me instant diarrhoea and makes me feel dreadful; on the other hand I am a cheap date as I can get extremely drunk from one alcoholic beverage.

My friend is on the blah, blah diet and he is now cured!

If I had a penny for every time I’ve heard this one…first up diet can help prevent flare ups and keep you in remission, I know as I’ve been fortunate to find a diet that keeps me in remission (the LOFFLEX for reference). However, it’s incredibly difficult to find the right diet, as there are so many to choose from: the IBD-AID, lowfodmaps the SCD, keto, to name just a few. And for reference there is no cure to date for IBD. But some diets definitely keep the inflammation markers down. I know this because I’ve got access to IBDoc – so for example, I know that egg actively increases my inflammation and although wheat makes me feel terrible, it doesn’t necessarily increase my inflammation. I also know not to say ‘ well I can have rice cakes’ so you must be able to as well. Its such a unique disease, with entirely different responses the only question I want to hear is – do you think home testing will become the standard way to manage Crohns – yes I would shout with glee – yes ask me that question – yes please. Oh and can we share the data, look at the worldwide patterns? See if there is any standard can do’s and don’ts but I'm convinced we’ll get there.

I guess people never intend to offend, upset or in anyway make you feel worse than you’re already feeling so I never get upset with people, but share my blog with people that have asked you these questions in the past and maybe just maybe we can start gently getting our point across?

Reset and rethink

I have been waiting patiently since the beginning of this year to write this blog, although on refection I’ve been waiting ten agonizing years to write this.

August 28^th 2009 was the last time I felt even remotely healthy. The day after and up until January this year I have suffered daily from debilitating brain fog and crippling fatigue, both extra-intestinal manifestations of inflammatory bowel disease. These two symptoms had been so severe in their relentlessness that I had to give up the work I loved as clients ceased to call - knowing I couldn’t commit to completing projects. I lost touch with dear friends as I reluctantly stopped returning their calls; the effect being my social life came to a slow and lumbering halt. If I’m honest I ceased to enjoy socializing many years ago as the brain fog made social interactions painfully awkward, which in turn led me to become socially anxious, so of course I found myself withdrawing.

My symptoms had stayed unrelenting up until the beginning of this year when I was referred to a consultant neurologist after a period of extreme dizziness and fatigue that left me bed ridden. I bore little hope of progress from the costly, private consultation as most of the research regarding brain and the gut were positioned around dysfunctional digestion (IBD, SIBO, gut fermentation). However, the consultant immediately asked me a series of intriguing questions:

Do I sometime crave carbs?

Do I have ‘undeserved’ hang overs from small amounts of alcohol? Am I constantly thirsty?…………..

The consultant’s conclusion was I have symptoms of migraine without the head aches. He has observed before with IBD. Who knew?

The consultant’s protocol was simple for me to implement, I was to:

Consume 3 litres of water daily

Avoid all caffeine

Avoided all chocolate

Reduce carbs and sugars.

Take 75mg pregablin daily

So with some reluctance I began the protocol and at first I didn’t notice any significant improvements. But slow and steady wins the race. It seems to be working. Not because I feel all of a sudden well, its like watching your children grow up, other people observe it more starkly as they have periods without seeing them. But my wife will say – ‘are you sure we can’t go, not even for an hour? Are you sure you’re too poorly cos you actually seem ok this week?’ and give me a ‘gentle’ nudge in the right direction by challenging my fixed mindset. So when I observe my activity, actually I am in work more, I am writing music again, I am actually going (and enjoying) nights out, I even made it to a wedding. So something must be right. But its hard to re-set and change your mindset after ten years from ‘I can’t’ to ‘well maybe I could’… and I’m not promising plain sailing. Its not perfect and I have to force myself out of the comfort zone, recalibrate, re-think the possible and be totally grateful that I have the support, education and where-with-all to be able to find solutions to my ill-health… but that’s another subject matter.

For now I’ll concentrate on a growth mindset as opposed to fixing myself in the land of the sick and see where we might go.