If there’s one thing you can say about people with
Crohn’s disease it’s that you know your body better than the average person.
You know the difference between a niggle caused by something you know doesn’t
agree with you and the start of a flare up, probably because at some point
you’ve been filling in food diaries or a daily symptom checker, monitoring
documents the nurse has given you to fill in, you also correlate patterns of
activity in the hope you can find the pattern that will lead to you feeling
marginally better , Do you? Or is that just me?
As I post my monthly blog on many Crohn’s forums, increasingly
I come across people who don’t know how to access the power in their own
knowledge. They are blindingly eating foods that aggravate their condition, or finding
themselves lost in hospital administration. I’m always intrigued to hear other
suffers stories and feel duty bound to sharing the knowledge I have gained over
the twenty five years of having this disease.
It’s a privilege to be able to use the IBDoc. Affirmation of
the knowledge which significantly and categorically reduces my overall anxiety
levels that every niggle is a sign of increased inflamtion. IBDoc shows me it’s
not! A real time example of the IBDoc in
use was my recent stomach flu, which I detailed in my last blog. Seven weeks
after the bug I’m only now getting back to “normal”. Over the course of that
seven weeks my toilet actives increased significantly, as did my bloating and
nausea; I’d sent a stool sample to my GP to check there wasn’t anything
lingering, which came back normal. So I knew I had to just wait until my gut
flora got back to its usual status. I’m now ready to begin the plan I had
discussed with my nutritionist over seven weeks ago! The only problem is I have
a holiday booked for France with the family in late August, so to stick or
twist? I will be discussing this in detail in my next blog. If I didn’t have
access to IBDoc I would have been convinced the stomach bug had caused a
massive flare up, the result from my last IBDoc test was 40u/ug, which means a negative result’s,
zero inflammation! The
result from IBDoc meant I could have a relaxing weekend safe in the knowledge I
wasn’t on the brink of a trip to A&E and I wouldn’t have to call my IBD
nurse and wait for her response.
If you’re reading this blog. Clearly I am preaching to
the converted as your research has brought you here. However I believe there is
a significant proportion of our community that are still in the dark about many
treatments, tests and diets that can help this wicked disease. Below are a few
nuggets of knowledge it might be worth sharing from my journey. Keep sharing
knowledge. Who knows? Between us, one day we’ll find the answer.
My knowledge networks:
Professor John Hunter is a
Consultant Physician at Addenbrooke’s Hospital, Cambridge, visiting Professor
of Medicine at the University of Cranfield and a recognised authority on
diseases of the gut including Crohn’s Disease, Colitis and Irritable Bowel
Syndrome. He has contributed over a hundred research papers to major medical
journals including The Lancet, Nature and the British
Medical Journal and is the author of Irritable Bowel
Solutions, Inflammatory Bowel Disease and Solve Your Food
Intolerance.
I had the privilege of
this man as my consultant. I learnt lots, not least the miracle that turned out
to be cholestyramine, which cut my toilet visits down from ten a day to one!
Prof. Hermon-Taylor, together with Dr Tim Bull and
other members of the team at St George’s University of London and scientists at
the Jenner Institute University of Oxford, developed a modern DNA vaccine
against MAP. This took 10 years and cost around £850,000, much of it donated by
the families of Crohn’s patients, without whom this new vaccine would not exist.
This is a fantastic resource for all things MAP
related; entirely self-funded, a real committed set of individuals whose
contribution to Crohn’s research and support is phenomenal.
RHB-104 is
a potentially ground breaking, proprietary antibiotic combination therapy in
oral capsule formulation, with potent intracellular, antimycobacterial and
anti-inflammatory properties.