Tuesday, 5 November 2013

OPINION - Cure for Crohn's?

This wasn't my intended next post. I was going to delve into an Upper GI endoscopy but my wife happened to mention that the Channel 4 Series "Health Freaks" would be featuring a lady who claimed to have "cured" her Crohn's Disease using tree bark. I had already missed it in real time but could still catch it on C4 + 1. There were a few comments appearing from the #IBD community on Twitter. I had to watch....
Over the years there have been many newspaper articles along the lines of "Miracle Cure for Bowel Disease". The Daily Nazi, sorry Mail, has a penchant for them. As a sufferer from Crohn's for 35+ years I'm sceptical and that is, understandably, the attitude I started out with when watching the C4 programme. I won't describe the format - have a look at the "Health Freaks" page on the Channel 4 website.

I watched the programme again on the Channel 4-on-demand service just to make sure I remembered everything correctly.

The main presenter introduced the film by briefly describing the effects of Crohn's Disease, the fact it is currently considered incurable and that there are 115,000 sufferers in the UK (more of that later). There then followed a short film showing the "cured" woman wandering around some woodland with a saw in hand, cutting into the bark of various trees. She went on to explain that she had had Crohn's disease for 50 years; that conventional medication hadn't kept it in control; that it caused her a lot of lower abdominal pain; that she had started looking for alternatives and tried various tree barks, with varying success. She stated that her last endoscopy had shown "her stomach was in pristine condition".

OK. I remained sceptical. It was now time to put her claim to the panel of GP's to see if they thought it worth pursuing with further research. After a brief discussion, in which it was reiterated that Crohn's is considered to be incurable, they decided it didn't merit more research. Right decision! What did annoy me was the comment to the woman from one of the GP's (Dr.Ellie Cannon - resident GP for The Mail on Sunday - @Dr.Ellie) who said "I can see you are a very empowered person and I believe that it is this whole package that has CURED your Crohn's". Whoa. Why say that! I can just imagine someone who has heard of the disease, but didn't know a lot about it, coming away with the impression that if you are "very empowered" you can "cure Crohn's" which could easily morph into "it's all in the mind". Just what we need in the fight for IBD Awareness and greater appreciation of the problems caused by this "invisible" disease.
Old News

I needed to do a bit of my own research so Googled "Cure for Crohn's Disease". This suggested a sub-search of "Cure for Crohn's Disease tree bark" so clearly others had been doing a similar search. It was very enlightening. This story had been around for a few weeks and not just as a result of the Channel 4 show.

A website - NaturalNews.com - had an article, dated 24th September 2013, headlined "Grandmother cures Crohn's disease by eating tree bark". It takes the stance that bark as a treatment for inflammation is well known and that the grandmother could have saved herself a lot of trial and error if she had read up about it. But that wasn't the bit that stopped me in my tracks. It was this paragraph, which I've quoted verbatim :

"While Ms. Barnes's story is inspiring, it does contain a disheartening epilogue: She refuses to openly name the species of tree whose bark produced the best effects, preferring instead to capitalize on her findings by selling the recipe to a large pharmaceutical firm."

Definitely needs some further reading.

The Daily Nazi (Daily Mail) had also heard about the story. Here's some extracts :

"The inflammation caused by Chron's (sic) destroys the tissue of the bowel so badly that surgeons must cut out sections of the intestine.

She told The Sun: 'Then I read of bark’s medicinal properties and felt it was worth a go. She began cutting bark off trees in a park, then dried and ground it up at home......

A letter from her consultant gastroenterologist in August said: 'Recent investigations have shown no evidence of active disease. She now apparently plans to sell her secret bark recipe to a pharmaceutical giant."

No further enlightenment but the next reference was to the BBC website and that provided some very relevant information. Here's an extract -

"Marlene Barnes, 72, of Cardiff, had part of her colon and intestine removed due to the illness and began grinding up bark for a remedy 16 years ago. Her consultant told her: "Recent investigations have shown no evidence of active disease."

Very interesting. "Had part of her colon and intestine removed"? Don't remember that being mentioned on "Health Freaks". "Recent investigations have shown no evidence of active disease."? That equals "cure" does it?

As with any television programme you don't know how much falls prey to time constraints and the editing. The surgery, I believe, could be very relevant to this whole story. I don't know all the facts so won't make any further comment. I'll leave you to come to your own conclusions.

Good News Then...

Using the Daily Mail's resident doctor's criteria I am "cured" of Crohn's. Yes, me personally. On what basis? Well - in October 2010 I had my terminal ileum removed, about 14cm including the strictured bit. Two subsequent colonoscopies have shown no signs of inflammation or active disease (Rutgeert's Score of i0) but I would never say cured. I know that Crohn's could start to attack another area at anytime. I'll go with temporary remission".

(Subsequently I have been diagnosed with severe Bile Acid Malabsorption (BAM) as a result of losing my terminal ileum. For some reason it is not a subject that seems to be discussed very often. Untreated it's symptoms are very similar to Crohn's - the frequent bathroom dashes. Even if a cure is found for the Crohn's itself for those of us who have had surgery may still have to battle with BAM).

The Numbers Game

Doing the research into this story I came across the following statistics :

The BBC website said "The inflammatory bowel condition, which affects 60,000 Britons, causes symptoms including pain, diarrhoea, vomiting, weight loss and fatigue"

An article in the Jewish Chronicle quoted the number as 63,000. Close enough

The BUPA website quotes "about 90,000"

...and "Health Freaks" used the number 115,000 which comes directly from NHS Choices :

"Crohn’s disease is a relatively uncommon condition. There are currently at least 115,000 people living with Crohn’s disease in the UK."

So which one is it? I would expect the NHS to have the best statistics so anyone quoting less than 115,000 is doing us Crohnies a dis-service.