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.

It’s My Life

You know that feeling when you realise the iconic heroes from your youth have died or were much older than you ever thought they were…?

This is how I felt when I heard the news that Mark Hollis, lead singer of Talk Talk, (of hits including ‘it’s my life’) met a premature death in February this year.

I was transported back to the cafeteria of a London recording studio; a hopeful ‘Manchester’ wannabe on a tour bus of ill-fated attempts at fame. My teenage band and me had secured a recording contract with a prestigious major record label and thought we’d made it when we were sharing the same canteen as Talk Talk.

Alas, fame and fortune wasn’t to strike, but Crohns disease was.

I’ve battled - you’ve read the blog.

I’ve been angry - haven’t we all?

And now I’m ‘managed’ it’s a pain -sometimes quite literally.

I was young and free and jumping on tour buses and travelling the world and eating pretty much what I wanted, when I wanted. However, a hemi colectomy and a small bowel resection later travelling now is altogether a different matter:

As an example, early in 2014 I was completely med free and following the lofflex diet to manage my CD. As a family we decided to go to Portugal for a well-earned rest. This was the first time out of the country for me using diet alone to manage my CD, so I was incredibly diligent when it came to the food I would eat. At that stage of the diet, I could only eat chicken, rice and carrots, so the thought of travelling filled me with anxiety.

I decided rather than eat the airport and airline food I would take a flask of my own food. In order to do that I knew I had to get a doctors letter. So with doctor’s letter in hand myself and my family went off to the airport looking forward to our holiday together. On arrival at the airport it was the usual summer get away chaos, customs officers were moving thousands of people at a time through the gates; when it came to my turn I obviously took the flask out of the bag then an officer came over asked me to open the flask I gave him the doctors letter. The letter was discussed with  his supervisor , and as this conversation between customs officers continued I could see my wife and kids being ushered through to the gate as our plane was due to take off. By this point my anxiety was peaking. The officers eventually gave me back my flask of now lukewarm chicken rice and I boarded the plane… not a great start to our holiday.

On arrival at the apartment I immediately checked out the kitchen facilities, which were really no better than a camping stove with minimal pots and pans for me to cook my chicken and rice on. Needless to say it wasn’t a particularly relaxing holiday for myself as I was constantly thinking of the food I needed to prepare as well as the return leg of the holiday. I did learn from that first holiday, but what you gonna do? Limit your horizons? Yep done that. Or take mini breaks now and then and go ‘wild’ with a croissant or a slice of cheese. So I’m currently doing the latter. This year I have had a couple of days in a camping pod, a city break and a self-catering haven in the Yorkshire Dales all with the family. I am of course extremely lucky as I can check my inflammation using IBDoc whilst I am away to see how bad the damage is and then spend the next few weeks getting it back on track.

Some people choose really restrictive diets for weight or on principle for example as vegans, and I’m certain they come across as many hurdles as I do. But I guess it’s because it’s their choice. Maybe that’s why I find a restrictive diet so hard - I didn’t choose it. I didn’t choose it but it is indeed my life. So if I can manage the risk, at least I can live it.