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.

“The great aim of education is not knowledge but action”

“The great aim of education is not knowledge but action”, said the great British philosopher and sociologist Herbert Spencer, 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 under a years worth of hard data to discuss with my GI.

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.

(See figure 1)

 

Figure1

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” in fact, the average result over the course of the year was, 140u/ug, I consider this to be satisfactory (apart from the huge spike which was due to me going on a food rampage) as my GI is comfortable with results below 200u/ug.

So what to do with the data? Well, I have a consultation with my GI mid September and this is will be the first time I can present a years worth of data to him, I have no idea how this will inform his decision making. For me, I believe the IBDoc data will be the keystone for my treatment plan moving forward. I consider all my appointments with my GI team important, not least because of the small amount of time one has with the GI and the three-month gaps between appointments.  I believe this appointment justifiably significant; the reason being I have been on Vedolizumab for coming up to two years. My evaluation of its effectiveness over the course of those two years is that I do feel better on the Vedo as appose to just diet (LOFFLEX).

Positively, I have zero side effects on Vedo, no hair loss, no joint pains, no flu like symptoms etc.

Negatively, there has been no real decrease in my fatigue levels or the brain fog, which are my main daily challenges. The Vedo hasn’t allowed me to liberate my diet from the limited foods I can eat safely. So do I stick or twist to another treatment?

What I do know is that even when my Calprotectin levels are in “normal” range, I still feel unwell, as in my previous blogs I discuss the fact I believe I’ve developed many food intolerances. Being able to discuss this food intolerance vs. Crohns symptoms based on the IBDoc data will be an interesting conversation with my GI. 

I will discuss the actions from my GI appointment in my next blog.