What is Crohn’s Disease?
Crohn’s is a chronic, inflammatory bowel disease (IBD) that can cause damage anywhere along the digestive tract, from the mouth to the back passage and all stops in-between. It can also affect other parts of the body, although this is more unusual.
I was diagnosed with it in 1978. Whilst, as patients, we are included under the Crohn’s umbrella each one of us experiences the disease in different ways. There will be some similarities; some common themes; but overall we are each unique. This journal is based on my personal Crohn’s story.
There are also many different ways of coping with the condition. I’ll let you decide if the methods I have adopted could help your own situation.
Background
This book has been adapted and expanded from the online journal that I started in 2010. If anyone had told me then that I could write in excess of 100,000 words on living with Crohn’s disease I simply would not have believed them.
Why did it start? Wind the clock back to July 2010. I was going to be absent from work for an extended period of surgery and recuperation. A colleague made an off-the-cuff remark that she would like to know how I was getting on whilst away so why not start a blog and post regular updates? It might also prove useful to other IBD sufferers who were about to follow a similar path.
My first tentative step was a post in August 2010, prompted by having to attend a series of appointments at a London hospital. I enjoyed writing those posts and preparing images for inclusion as I already used similar skills in the website design I had been doing for twenty odd years.
I was determined to continue posting throughout my absence so I bought an iPad to keep “wired” when away from home. 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.
Boundaries
It takes a certain amount of courage (more likely self-obsession or vanity) to intentionally publish some very personal information. I suppose it is the literary equivalent of posting selfies on social media. I decided to set myself some boundaries. This book focuses on my Crohn’s-related experiences and is not intended to cover any more than that.
It is certainly not a full autobiography as there would be little worth writing about! In the age of the mash-up you could call it a automedicography, or is that too close to mediocrity? I have included some details of my personal life but only where some background is needed to explain the thinking behind a decision.
There are very few names used throughout – that includes surgeons, doctors, consultants, and nurses – and few mentions of my family, friends and colleagues, other than to explain how they have supported me. As my wife pointed out it does not cover the worry and heartache that those around me have undergone as the Crohn’s has taken its various twists and turns.
Finally, whilst there are a few images taken from endoscopies, there are no pictures of scars or body parts. I’ll leave that for others to do.
Styles
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 and fading memories. After that date 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 always get asked each time I saw a new consultant
i) when were you diagnosed with Crohn’s?
ii) when was your initial surgery?
iii) 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 records from July 1978 onwards.
Informed Patient
Writing has proved very therapeutic and I believe it has helped me cope with various new conditions that have appeared. I would recommend it to anyone suffering from a chronic illness, even if it doesn’t end up being published and just remains as a private diary.
Many of the chapters are Crohn’s-specific, but some contain information that could be useful to anyone with a long-term condition; about to experience 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 both of us. In simple terms :
I AM THE EXPERT IN MY HEALTH, MY CONSULTANT IS THE EXPERT IN MY CONDITION