By Nigel Horwood
Nigel guest blogs regularly for Bowel Research UK, and is an active participant in Bowel Research UK’s People and Research Together (PART) network.
When I was asked to write some blog posts for Bowel Research UK they, very helpfully, gave me some subjects to share my thoughts on. One of them was “staying on top of your condition as you get older”. I think the idea was for me to impart some pearls of wisdom of living with IBD at an advanced age, however, getting older is a relative term. When I was diagnosed at 22 it seemed that reaching 32 would be a challenge. I’ll take you through some of the things that have helped me at various ages along the way. To be honest I think they could help anyone, chronic condition or not.
Now that the techniques of mindfulness are becoming popular I’ve realised that I had been using some of them without knowing that they had a formal name. Similarly, some of the lessons learnt during the COVID-19 lockdowns are applicable to living with a long-term medical condition.
Many years ago, before IBD and mental health were being linked, I discovered that reducing my stress made it easier to achieve a level of remission. That’s not to say all stress. The self-inflicted kind – playing in a band; taking part in a competitive sport was in my control, but the stress induced by outside forces, especially commuting to work or at work itself, needed to be managed.
I was able to shift my working day, starting early and leaving early, as it allowed me to avoid the rush hour and crowded trains, so much easier if I needed to use the toilets. Destressing the workplace was a little more difficult but there was one particular assignment where I was able to adopt a laid-back attitude that has served me well ever since.
Up until 2007, I worked for large companies as a Principal Planner but, with my health apparently stable, I decided to leave the security of employment and start working for myself. This may sound like a surefire way to drive up stress levels but it meant that I could move to even more flexibility by choosing which days to work and whether it would be at a client’s office or remotely from home. I was now in control of my work-life balance and I favoured life.
I still needed to travel to London quite frequently and the trains were getting progressively more unreliable. My stress levels were rising again. I discovered that the first few trains of the day usually ran on time. Although it meant arriving in London very early I found that by getting off a couple of stations before my normal stop I could spend an hour or so walking through the virtually deserted streets of the capital. Not only was I benefitting from the additional exercise but I arrived at work in a relaxed state.
Three years later my health started deteriorating as I had to stop taking the azathioprine which had kept me stable. Many days I did not feel well enough to travel into work and there were multiple hospital appointments to attend. Flexible working really came into its own. It became apparent that the knife was inevitable which raised a new challenge, maintaining low stress levels despite heading for surgery. Being semi-elective (i.e. not an emergency operation) there was plenty of time to get my affairs in order and to make lifestyle changes. The opportunity to be proactive rather than reactive helped me to maintain my calmness but there was a side effect: as I became more laid back my wife became more stressed.
When I finally had the date for admission a colleague suggested I start writing a blog. To be honest I was rather dismissive of the idea but once I had started posting updates from my hospital bed I found it incredibly cathartic. The thinking process needed to describe what I was going through made me very objective, almost one step removed from what was happening to me. It has held me in good stead ever since when undergoing a multitude of procedures or ending up in A&E and is something I maintain to this day as I get older.
When I met the specialist nurse prior to surgery she said, firstly, the fitter you are before entering the operating theatre the quicker your recovery should be and, secondly, the surgical team like you to be well up to weight as you can lose a fair amount during your hospital stay. I thought about this along with the statistic I had been told many years previously that once a Crohn’s patient had undergone surgery the average time to a further operation was 10 years. I had bucked the trend – after my first operation, due to a perforated bowel, thirty-one years passed before I was on the table again.
Realistically I will require more surgery before I shuffle off this mortal coil so I have shifted my emphasis to keeping physically fit and at the upper end of my recommended BMI. The latter is the easy part. Having never visited a gym (and never intending to!) my daily workout is based on practical tasks – mucking out two stables; working in the garden or taking our dog for long walks, all of which are easier to schedule now I have retired. Every eight weeks I have an infusion of the drug that keeps me well and I swap the countryside for a trip to London when I can rekindle my love of exploring the backwaters of the capital.
One aspect of IBD that I haven’t found an answer to is fatigue or, to be precise, the guilt that comes with it. After all these years I still cannot get my head around not being able to do something, in the middle of the day, because I’m just too tired or have already dozed off on the sofa. It has become slightly easier as I have to accept that my pace has lessened due to the ageing process but it still gets to me. It’s only IBD after all. I don’t look ill.
…And finally, one practical thing that I do to counter creeping forgetfulness is using a 7-day pill organiser to help ensure I remember to take the correct dose each morning and evening.
These are my personal ways of helping to live with Crohn’s Disease. I know they may not be practical for everyone but hopefully will give you some ideas to build upon.