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

@IbdocMe

www.calprotectin.co.uk

 

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

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.

https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/how-it-works/

What's on the Agenda?

In this October blog I thought it might be useful to share the agenda I presented in my September appointment with my GI. On reflection the agenda may look a little over the top, in fact this is the format I use in my business life. I find this process functional and I generally come away with a plan for the next months.

If you are new to this disease that means you are in a completely new world of GI appointments, follow-ups, and understanding the language and references used. All this and feeling possibly dreadful too! I am lucky in the sense I have a great GI who is open to discussions, when I presented him a years worth of data from IBDoc he was impressed with the data (see previous blog for IBDoc graph) He said, Although he can not use the results clinically he can use the IBDoc data as a significant part in informing the next stage of my treatment plan.

Here is the agenda.

14^th September 2018.

Evaluation of the last year.

My day-to-day quality of life is poor, which is due in part to the fatigue, brain fog and bloating, which I’ve had daily for the last eight years, regardless of medications. I can only work part time as I need to spend my non working days recuperating (pacing) to be able to attend work the next day.

This begs the question; do I stay on the vedo or try new medication in an attempt to achieve a better quality of life?

Positives of Vedo.

·       Zero side effects.

·       Mild improvement of symptoms pre Vedo

Negatives of Vedo.

·       I don’t know if it’s working for me at all?

·       If I go off diet for a couple of days my Calprotectin shoots up.

Vedo Questions

·       How do we evaluate how well the vedo is working?

·       Is it down to patient symptoms only?

·       Is there an antibody test like Infliximab?

          IBDoc results analysis

·       My average result over the year is 140u/ug discuss

·       Regardless of the results from IBDoc and even when I have a negative result my symptoms are roughly the same each day.

SIBO (Small Intestinal Bacterial Overgrowth)

·       What’s the treatment protocol for SIBO?

·       Tested positive for SIBO via hydrogen breath test 2012

·       Review these test results

·       Retest with both hydrogen and methane breath tests?

·       Antibiotics? Pulsing rounds of?

Antifungals

·       Dr: previously prescribed Itraconazole (see letter) can we try these again? Or alternatives? As I felt an improvement of symptoms.

·        

MRI of Small bowel

·       We discussed this at our previous consultation.

So based on my symptoms and the IBDoc data the plan for the next three months is to have a blood test to see how well the Vedo is working; as well as the vedo blood test, I have an MRI booked for mid October. My GI has booked me in for hydrogen breath test as well as a new test that’s being developed to  test for bacteria in the small bowel. I always feel positive when I cover the points from a pre prepared agenda.

As we know there isn’t a cure for CD, so my strategy is to deal in percentages, if I can increase my general wellbeing in terms of percentages, I will feel as though there is some progress.