Wednesday, 27 February 2019

Eighteen Months with IBdoc


In this months blog I thought I’d share an article I wrote to evaluate my experience over the last eighteen months using IBDoc.

I’m sure you’ve heard the old adage, “you create your own luck” well I did exactly that by writing an article for Alpha Laboratories Perspective magazine in Autumn 2015. The article resulted in the amazing opportunity for me to test IBdoc as a client; I have been using Ibdoc for over a year, it’s now time to share my finding.

The number one finding for myself 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 or 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 or the dreaded colonoscopy.  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 doesn’t result in me calling my IBD nurse for reassurances she can’t give me. On reflection I haven’t called my IBD nurse once since I began the IBDoc trail.

I believe what IBDoc has allowed me to do over the course of the last year is fundamentally educate my self in understanding my disease state. I now have just over a years worth of hard data to discuss with my GI.

Figure 1
One of the cool features with IBDoc is the ability to track ones Calprotectin levels over the course of time. Within the IBDoc app is a great feature, which shows a time line of your Calprotectin levels.


Looking at my data for the year, we can clearly see that I’ve managed, with medication and diet to remain roughly between “ Normal” and “moderate” the average result over the course of the year was, 138u/ug, I consider this to be satisfactory (apart from the huge spike which was due to an Easter meal) as my GI is comfortable with results below 200u/ug.

 (Screen shot from the Ibdoc app)

Crohns disease is a physical condition, we know that of course, however one cannot underestimate the mental pressures this disease presents. So I may have an upset stomach or my bowl movements my have increased or I may feel nauseous but I know after a year of using IBDoc I’m not going to end up in A&E with a stricture or spend weeks on a ward waiting for invasive procedures to tell me I have little or no inflammation.

Having Crohns disease for twenty-seven years has taught me many things, fundamentally that patients need to self manage, and IBDoc is one powerful tool in my self-managing tool kit. I wasn’t expecting IBDoc to provide me with the answers to everything; using IBDoc I haven’t suddenly found a miraculous cure, I’m still searching for the “perfect” diet and optimized plan however, I believe IBDoc has contribute significantly to both the physical and mental aspects for the management of my disease.














Wednesday, 30 January 2019

New Year New Attitude



As it’s a New Year I have been reflecting on many things and believe it or not, I find that I have to acknowledge there are positives to having CD. “What are you talking about” I hear you shout!  Are you crazy? What about pain, the fatigue the endless trips to hospital………….But I genuinely believe it to be true. Maybe its because I have lived with this disease for 28 years, longer than I’ve lived without it, or maybe its the fact I’m pushing fifty that I can reflect on some of the positives of my experience with Crohns disease.

Reading back the above paragraph, it sounds quite glib and believe me there have been many times over the years I have felt the whole gambit of emotions, anger, hopelessness, guilt and frustration to name a few. Anger at the fact my body has let me down. Hopelessness of yet another treatment that has failed. Guilt and frustration that I have yet again let my wife down or cancelled family travel plans, not to name the countless number of my daughters school plays or my sons football matches I have sadly missed. If I’m being completely honest I have on occasion acted like a screaming two year old throwing my toys out of the pram and acting out in front of friends, family, doctors nurse, you name it I’ve done it but I will come back to that shortly.

So, what are the positives? Well, firstly, perspective, I never take my health for granted. I guess you have to be chronically ill to understand this one, but I’m truly thankful for each day I can get out of bed and join in with life, I take great pleasure from the simple and mundane tasks of life, like having the energy to tidy my house, make dinner or pick the kids up from school. Secondly, I’m eternally grateful for the free services and excellent care and compassion the NHS has provided me over the years. I asked my wife to come to my last Vedoluzimab infusion, not for support or pity– but because I wanted to introduce her to the nursing staff who look after me and the fellow-suffers I see monthly, who I would now call friends.

As I’ve mentioned I have on occasion acted like a small child in terms of accepting and dealing with this disease, Food being the main focus of my child like approach. Fortunately with the help of IBDoc I am slowly changing my attitude to food. I no longer sneak in the kitchen for foods I cannot tolerate, dairy being a good example as it only serves to accomplish two outcomes. 1: consuming dairy makes me feel absolutely terrible 2: if I eat dairy over the course of a couple of days my Calprotectin level rises significantly. So I’ve decided to understand the food I eat and the impact it has on my body. I’m still on medication (Vedoluzimab) but with no real side effects, on this occasion, I can again find the time to be thankful.


For a long time I didn’t want to consider trying to find something to be thankful for with my disease, and that excepting my situation felt like I was giving up. I can’t really pin point the date I began to take the time to find gratitude with my situation. But my new found attitude and my New Year mantra says it all:

"'Enough' is a feast. Buddhist proverb

www.calprotectin.co.uk

 

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













Wednesday, 14 November 2018

Just Stop!


Just stop!!… Is the line my wife finds herself saying to me most days. I am of course referring to the endless chatter one has with ones self when dealing with a chronic illness. You see my brain knows there is a “system error” it knows there is something terribly wrong and is constantly trying to find a way out, I mean constantly! It’s absolutely exhausting! For all the useful torrents of information connectivity has gifted us, its so very easy to find ones self falling down the rabbit hole of endless Crohn’s disease forums, Facebook groups or “Expert” YouTube channels in search of some relief, and lets face it, the list is endless.

I often wonder if there is some link between the classic over thinker (me) and chronic disease. Indeed, if it was 5000BC and I was leading my tribe across a lion infested plain in southern Africa, I would be in my element! Firing on all cylinders! Intently observing the horizon for any potential threats, maybe a herd of marauding wilder beasts? A pack of starving hyenas? I would be constantly monitoring for any threats. But as it’s November 2018 and I’m sat in my living room writing this month’s blog my classic over thinking brain is largely redundant.

As you may know from previous blogs I like to share best practice, and one of the most significant treatments I have found for dealing with this disease is CBT (cognitive behavioral therapy) it’s basically a talking therapy that helps manage problems by changing the way you think. CBT is pragmatic in the sense it helps identify specific problems and tries to solve them. The sessions are also highly structured, so rather than talking freely about your life, you generally focus on current problems rather than attempting to resolve past issues. CBT certainly helps reduce the “noise” from my over thinking brain. Which gives me time to put things in perspective and focus on anything that isn’t Crohn’s disease.

I am incredibly fortunate to have access to IBDoc in the context of my over thinking brain as it gets shut down immediately when I see the results of my latest  test; knowing I’m not hours away from a massive flare up with a low u/ug reading cannot be under estimated.

The main focus from our GI teams has to be based on the physical of this disease, i.e. disease maintenance, blood works etc. but as we understand more about the gut- brain connection we must pay attention to our wellbeing and part of that wellbeing is to accept that maybe today there are no solutions, so put down that laptop, turn off that phone, or as my long suffering wife says…Just Stop!

Follow link for NHS CBT services.