Tell us a bit about yourself: When and how were you diagnosed?
In October 1977 I was at college and started having to make frequent dashes to the bathroom. When I eventually plucked up the courage to see my GP he put it all down to “nerves”. It wasn’t until he went on holiday, in July 1978, that I saw a locum. He took one look and sent me to a gastro consultant. Within 3 days I was in hospital undergoing extensive tests. The conclusion was Crohn’s Disease and I started my 30 year relationship with prednisolone.
How have things changed since then?
I would have hoped that nowadays doctors would be a lot more switched on to IBD but sadly you can still read many tales of it taking months, sometimes years, before patients get properly diagnosed. Often they are fobbed off by being told they have IBS. I find that very disappointing given the tests and procedures that are available to give a definitive diagnosis.
You’ve written a book about your experience with Crohn’s called “wrestling the Octopus”- tell us about the title.
When I was looking for a title I wanted something slightly “off the wall”. Whilst writing about the lead up to my ileostomy I came across the consultant’s explanation of a recent CT scan of my abdomen. “It looks like you’ve got an octopus in there.” That triggered my imagination. I pictured the surgical team wrestling with a flailing tentacle. It would make a great image for the book cover.
As writing neared completion it occurred to me that there was a second octopus to be wrestled – the health system. It was a good analogy for trying to manage the various parts of one’s treatment with diverse consultants, procedures and clinics. To this you could add the lack of a universal patient record system just to complicate matters further.
Your book (written in an accessible way and with a good dose of self-deprecating humor) mentions how one of your first doctors mentions that there is a theory that Crohn’s could be cause by toothbrush bristles and/or cornflakes. Can you tell us how you have experienced the field change?
When I was diagnosed very few people, including doctors, had heard of Crohn’s Disease and there were certainly some strange ideas as to a possible cause. In the ensuing years there has been much research into IBD, although there is still no definitive answer as to the cause and no cure as such.
I was always told eat what you want, unless it causes problems, and if you have a flare-up then get those steroids down you. There was no thought of tailoring one’s diet whereas nowadays there is great interest in the subject. (I can speak from personal experience as I am currently taking part in a research trial looking a the subject).
Whilst steroids are still used as a quick fix during flares the relatively recent development of MAB drugs (monoclonal antibodies), first appearing in 1999, is proving a real boon to patients. The newer ones are becoming more targeted to be gut specific so that they don’t degrade the whole immune system. The downside is the cost as they are very expensive to both develop and manufacture.
One of the things that sets your book apart are the many photos that you’ve snapped over the years. Did you do this as a pastime, or did you have a feeling that you’d need to document your experiences?
I’ve always liked taking photos and was given my first serious camera for my 21st birthday. I took it into hospital with me to record some of the everyday scenes, not knowing then that I would use them in my book some 40 years later. With the advent of digital photography I have treated my camera as a visual diary, recording the time and place of events. A good day for me is a trip to London, photographing the architecture and the River Thames. I’ve become a bit of a flaneur!.
You mention the lack of psychological support when you were diagnosed. What kind of coping strategies did you develop over the years?
I think that the early and unexpected death of my father hardened me and made it easier to cope with the emotional stresses of a long term condition. I was never depressed when I received the diagnosis of Crohn’s Disease, probably due to my ignorance of just what could lie ahead. Having a fairly analytical mind has also helped on numerous occasions as I can look at a situation and decide my best way of coping with it.
In 2010, just prior to the ileostomy, I started writing a blog at the suggestion of a work colleague. She said that it would be a good way of keeping friends and colleagues up to date with my progress but might also help other patients about to undergo similar experiences. I have found writing to be very cathartic. Rather than worrying about, for instance, a new procedure I would be wondering how I could put across the experience to a reader. It enabled me to treat these situations objectively and, for me at least, has helped keep a level of calmness despite some potentially scary situations.
You have a blog, are actively involved on twitter (@crohnoid), and now you’ve written a book. How important is the IBD community to you, and what do you hope your book will achieve?
Once I had started writing the blog I needed to let people know it existed. Initially I joined a couple of IBD forums but it wasn’t until March 2011 that I jumped into SoMe with both feet by adding a Twitter account. I “met” some lovely people on there and came to realise that the IBD Community could give much needed, instant support to those who were going through bad times. More recently there has been an increasing number of HCPs using the platform and that enables patients to get an insight into the subjects that are exercising our doctors’ minds and vice versa.
I hope that anyone reading the book, especially those who have been recently diagnosed, will see that it is possible to live a fairly normal life and that actively managing your health can pay real dividends.
Lastly, if you had to give advice to someone newly diagnosed, what would it be?
I was going to say “Don’t Google it!” but I know, from personal experience, that when you get a new diagnosis the first port of call is Dr.Google. That’s fine as long as you can distinguish the reliable sources and you don’t obsessively read page after page, deep into the search engine results. A good place to start looking for information is one of the national IBD association’s websites.
…and a final word of warning. There are many forums out there dedicated to IBD. Some are better than others but you need to remember that the bulk of posts will be from patients who are having a problem and looking for support. Very few people write “I’m feeling great. Everything is fine” as this could be considered insensitive to those who are going through bad times. For that reason I would maintain that forums are heavily skewed towards the negative. My vote goes to Twitter!
You can follow Nigel on twitter: @Crohnoid