The shortly to be published book “Crohns Disease – Wrestling The Octopus” has been adapted and expanded from my online journal (blog) that I started writing in 2010. If anyone had told me then that I could write100,000+ words on living with Crohn’s disease I simply would not have believed them.
Why did it start? Wind the clock back to Summer 2010. I was going to be absent from work for an extended period whilst I underwent surgery. A colleague made an off-the-cuff remark that she would like to know how I was getting on whilst away so why not try blogging? It might also prove interesting to other IBD sufferers who were about to follow a similar path.
I had read magazine articles about setting up blogs but they were aimed at using them as a promotional tools. It didn’t sound like a skill I needed to learn but, at the time, I hadn’t discovered the world of personal blogs.
My first tentative step was a post in August 2010, prompted by having to attend a series of appointments at a London hospital. I took to it straight away as the method of writing posts and preparing images was very similar to the that used in website design, something I’d been doing since 1997.
I was determined to keep posting during my absence so I bought an iPad to keep wired. Once started, the blog gained its own momentum and I have had many reasons to keep it going ever since.
As the list of individual posts grew it seemed sensible to amalgamate them into chapters and take the opportunity to cull some of the more long-winded or repetitive sections.
You’ll find a mixture of styles as you read through the chapters. I could have “homogenised” them but was keen to maintain some of the feel from when they were originally written. Chapters pre-2010 have been put together with the aid of medical notes; post-2010, the words have been written as they happened or very shortly afterwards. Filling in those earlier years has proved absorbing and I have now been able to find the definitive answers to the questions I would get asked every time I see a new consultant – when were you first diagnosed with Crohn’s; when was your first surgery; what did the surgeon do?” The first two were easy but what the surgeon did precisely was a mystery.
I thought it unlikely that any of the early notes still existed. I was wrong. Apart from a few missing X-rays, I have obtained copies of all my medical notes from 1978 onwards.
The Informed Patient
Writing has proved very therapeutic and I believe it has helped me cope with various new conditions that have arisen. I would recommend it to anyone suffering from a chronic illness.
A lot of the chapters are Crohn’s-specific, but some contain information that might be useful to anyone with a long-term condition; about to undergo the same tests or go into hospital for surgery. During the last few years I’ve realised the benefits of actively managing my treatment and becoming an informed patient. It makes meetings with doctors a more fulfilling experience, hopefully for them as well. At the end of this book you will find a short chapter that explains my approach to consultants and appointments. (It is also reproduced on this site)
In simple terms I like to explain my attitude as :
I AM THE EXPERT IN MY HEALTH,
MY CONSULTANT IS THE EXPERT IN MY CONDITION
I hope you will find this book interesting and informative (when it finally gets published). Below is the provisional chapter list :