Why did you get involved in the People and Research Together (PART) process?
I took early retirement in August 2016 and for the first time in many years I had some free time. I am a keen user of social media and saw on Twitter that BRUK’s predecessor was looking for patient volunteers. Having lived with Crohn’s for 40+ years I felt I had valuable experiences that might just be useful to others.
What I didn’t realise, before joining PART, was that medical research involved a lot more than simply trialling new drugs. At the heart of PART is a dialogue between patients, researcher and medics to ensure all benefit from each other’s experience.
The patients’ input is important to prevent the setting up of unrealistic medical trials that might prove too onerous to find sufficient participants or that will not benefit the patient in the long run. For instance, if there was a requirement for a volunteer to have, say, a monthly colonoscopy, no-one would ever put themselves through that in a million years!
You have a very hands-on approach to managing your disease and deal actively with the medical profession. What are the benefits of this approach?
I wanted to understand the complexities of my conditions which I felt I couldn’t do in a standard ten-minute appointment with a consultant.
That said, I didn’t always have this viewpoint. Up to 2009 I had a very little interaction with consultants apart from a yearly check-up but that all changed in 2010 when I needed bowel surgery. A few weeks post operation I met with one of my colorectal surgeons, Tim Campbell-Smith, at East Surrey hospital. His opening comment was how well I looked ‘considering what they had done to me!’. He went on to explain that the operation was one of the most complex surgeries they had carried out. It piqued my interest. By looking more deeply into my treatment, I’ve been able to understand as much as a non-medical person realistically can about their own condition, and this knowledge brings me peace of mind. It helps me tolerate the plethora of treatments, tests and procedures better.
Why did you write a book about your experiences of living with Crohn’s?
The book came about directly from my blog which I started in 2010 as surgery beckoned. That was a life changing experience going to a modern London teaching hospital and each step of the process was, in a bizarre way, objectively interesting. I felt I wanted to keep an accurate record of what I was going through and pass it on to others who might follow the same route.
The other trigger for my book was getting hold of all my medical records. There were four folders’ worth of notes going back to 1977, so I had all the substance I needed to be able to write in detail about my medical history of living with Crohn’s.
You’re an active blogger, does this help you deal with your condition?
Yes, I’d recommend writing to anyone, even if you never share it. Somehow, for me, the process of recording my Crohn’s makes it much easier to take an objective view. Whenever I’ve had to have a new procedure I’ve seen it as a challenge to convey it as a story on my blog. I treat myself like a reporter in the field, recounting the story one step removed. Writing cuts it down to a manageable size so that something daunting like a liver or bone marrow biopsy is turned into just another new experience that I want to tell others about.
The other benefit of blogging about my treatment is that I have a record of the discussions with my consultants and have been able to avoid covering old ground at appointments. For example, when I turned up for my second bone marrow biopsy, I asked the doctor if she was going to use Heparin to stop clots ruining the slides. She wasn’t aware that it was going to be needed because a consultant hadn’t written up my notes following the previous procedure. If I hadn’t recorded this in my blog, I could have had another abortive bone marrow biopsy.
If there’s one major lesson from all your dealings with hospitals and consultants, what is it?
When you see a consultant, go in as an equal. I know this isn’t always easy. Your confidence will probably grow with age. My advice is to approach the medical profession with the view that whilst they are experts in your particular condition you are the expert when it comes to your health. This attitude has served me well.
How optimistic are you about a cure or better treatments for Crohn’s?
I’m very optimistic about the number of new treatments that are becoming available but not so much about cures. In many ways, we don’t seem to be much further forward on the causes of IBD. My advice for anyone experiencing new health symptoms, especially with your gut, is to seek medical advice as early as possible. The sooner you have a diagnosis the sooner you can start treatment and, hopefully, avoid surgery.
In terms of treatments, things are clearly getting better. When I first learnt about Crohn’s, I was told 70% of patients would require surgery at some point and that, having had surgery, it would be an average of 10 years before you needed more. Latest studies show that the newer drug treatments, such as monoclonal antibodies, have meant that the incidence of emergency surgery has decreased but overall the 70% remains the same. I am hopeful that continued research will improve this statistic and that patients will be able to maintain a much better quality of life.
How does Crohn’s affect your life? With careful planning, can you live a near-normal life?
Yes, with careful planning I lead a near-normal life. If I am coming to London, for instance, I up my loperamide dose around two days in advance. I think my management of the disease has improved with time, but I also have to factor in that I am getting older and the ageing process must be taken into account. But it’s very manageable especially as I try to keep my stress levels down.