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.