I’m delighted to announce a new feature here on worklifespirit. ‘My chronic (Crohn’s) Career’ will present interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.
(Please come forward to be interviewed if you work and have Crohn’s by contacting me)
Can you tell me a bit about your Crohn’s history?
My first symptom, an ocean of blood in the toilet bowl, came out of the blue in 1976 in my first year at university. I was finally diagnosed in 1983 after multiple misdiagnoses such as haemorrhoids, stress, depressions blah blah! I had an immediate surgery – resection of the terminal ileum and 3 strictureplasties. I was the 3rd person in the world to have a strictureplasty, my surgeon in Birmingham invented it. I thought that would be it but the disease was rampant and uncontrollable for the next 10 years, meaning I was permanently feeling terrible and had another 4 surgeries, 2 more resections and another 20+ strictureplasties throughout the small bowel. I was convinced I would not live to see 40.
Things then miraculously quietened down though I still had plenty of health problems, but minor in comparison to what had gone before. A combination of steroids and Imuran mostly kept the Crohn’s ok. But after 10 years on steroids I had become dependent plus had early osteo so in 2002 was transitioned over to the then new Remicade (Infliximab) which changed my life. I have felt mostly very well since then.
I knew I had a couple of old strictures still in there so in 2007 I signed up to be a test patient for a new procedure, a Double-Balloon Enteroscopy. However, it all went wrong as it perforated my small bowel. The same evening I was taken down for emergency surgery which removed the perforation, strictures and old diseased bowel leaving me with about 150cms of small bowel. But that procedure also went wrong and during the night I had a major internal haemorrhage that was not discovered until I was going into shock. Major drama ensued with a ‘kill or cure’ massive injection of fluids then straight into surgery again where a leaking artery was discovered to be the culprit. Since then I have been well.
And how about your working life? What career path have you taken?
When I was diagnosed in June 1983, I was 3.5 years into my career in marketing at Cadbury’s in Birmingham. I asked the gastro, “so what does this mean for my career?” and he said, “Carry on as normal”. Worst advice ever and I’m glad I didn’t listen to it because it made no sense to me. I was in a stressful job where my peers and I worked long days. I realised that with Crohn’s I had to work smarter than my peers as I probably wouldn’t be able to work as hard over the long term.
So, after the first op, I came back into a job in a service function where I knew I could over-achieve even if I was feeling unwell or having time off. A couple of years later I moved back into marketing into the one job there that was more long-term focused (managing their Easter and Christmas product ranges), my reasoning being that, as I was always working on the season 18 months ahead, if I was too unwell to come in tomorrow, nothing would go horribly wrong. I made myself become a much more efficient manager than those around me as I knew I could not work long days on a regular basis. I changed jobs a couple more times between my ops, but always to jobs where I knew I could deliver results and never have to use my Crohn’s as an excuse for under-performance. I rarely shared with anyone in the workplace how bad I was feeling as I didn’t want the illness to cloud people’s judgement of me as a marketing professional. Basically, when I was feeling well I pushed myself, when I was feeling crap I got by.
In 1996 after 4 years without surgery I pushed for an overseas assignment and got a move to Cadbury Canada. I did well there, got promoted a couple of times and ended up as Senior Vice President of Marketing. I reached that level a few years later than some of my peers from the early days but so what? I think with Crohn’s and career you have to look much further ahead than other people and not let yourself end up in a job that you cannot cope with when you are flaring.
Did you know about your IBD before you were diagnosed?
Hadn’t heard of it. My mum was a nurse so she was devastated by the diagnosis. I, however, was ecstatic because I had a diagnosis!
How did you find out further information about your IBD when you were diagnosed?
No internet in those days so I went o Birmingham Reference Library and looked it up in medical textbooks. Probably a bad idea in hindsight as those books just focus on what can go wrong. But I have always had a thirst for knowledge about my condition, otherwise how can you keep control?
Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about IBD?
To be honest, I’m such a veteran now I don’t look for much more information. I Google for new news and go to talks about new developments. I do go on quite a few Crohn’s websites but more as someone passing on experience rather than asking the questions. I do get a lot of moral support from my 300+ Crohnie Twitter friends though.
Thinking about working and having an IBD – what do you find / have you found most difficult to manage / cope with in the world of work?
Not making it your employers problem. That was my main focus until I left the corporate world for good in 2003 when I realised I had actually been too successful – I was in a so senior a job that I could not balance the two. So I took a package, we downsized the house, went down to one car and have been far happier if a lot poorer!
What is your top tip for employers – what could they do to support people with IBD?
Hmmm, I don’t have any really given my mantra that I think the onus is on the Crohnie to stop it from ever being a workplace issue. Otherwise you are dependent on others for your own success.
What is your top tip for employees with IBD?
See above. Stay in control of your destiny, even if it means doing a job you can do in your sleep, because you might have to! Plus work for as big a company as you can where one person off sick is less of an issue.
When you have a flare up of symptoms – what is your ‘coping mechanism’?
Do you think you have developed any personal skills or qualities as a result of having an IBD? (I for example have encyclopaedic knowledge of public toilet locations!)
Definitely. Much more focused and forward looking. I am still working on my dealing with doctors skills though!
What advice would you give people who have just been diagnosed with an IBD?
It’s not the end of the world. It may well not be the life you thought you were going to have but you still can make the most of it. I think I have had a great life so far.
What advice would you give to the family and friends of someone who has just been diagnosed with an IBD?
Let them lead you as to how much to ask about it.
Do you have Crohn’s and a career? If so please come forward to be interviewed by contacting me!