A musician’s frank and candid experience on living with Crohn’s – Crohns Blog – Everyday life

Written by Paul Goodmaker on . Posted in Blog

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10th  March 2015

I am a 28 year-old self-employed musician, living with Crohn’s since being diagnosed at aged 10. I’ll be quite frank and candid, as this is how I would wish anyone else to be who was telling me about their experience.

To set the scene, here is a recent medical potted history…Surgery in July 2011 to remove large section of bowel and I was left with temporary ileostomy. In 2012 I had some abnormal blood results and other unusual symptoms, leading to a couple of hospital stays and an inconclusive diagnosis of abdominal TB. 2013 was a relatively smooth year. I did develop a hernia and a prolapse of my stoma, but this didn’t prevent me from starting to take on small amounts of work, though it was difficult as my job can involve some awkward physical activity. 2014 saw no improvements and some more unusual test results so my consultant has gone back to the drawing board and done a broad range of new investigations, including surgery in October 2014 to take biopsies from various places. I did opt to have my hernia replaced at the same time, which although made it a bigger procedure, meant getting three jobs done in one trip and preventing multiple surgeries! (Glass half-full and all that!) It’s now January 2015 and I am almost at the end of this plethora of investigations and will hopefully end up with a renewed positivity and plan of attack.

I play and teach the drums for my living. (I know! Of all the instruments I could have chosen as someone who will always tire more easily from physical work – I could have made a wiser career choice) My life to date and particularly in recent years can best be summed up as steady relapses with periods of stability in between but never achieving remission. In terms of everyday living, it can be very difficult for any of us to manage our disease whilst holding down a steady job. Relationships with employers can be difficult if they have no prior knowledge or experience of Crohn’s, especially as It’s not always obvious by looking at us that there is anything wrong. For me, as a freelancer, I am presented with a slightly different challenge; being predominantly my own boss, I have the added pressure of if I don’t work, I don’t get paid. Pressure and stress, as we all know can be significant contributing factors to a relapse in their own right, so this can become a bit of a vicious cycle.

In these situations, I have come to learn that ultimately, health MUST come first. It’s easier said than done and I used to be very adamant that no symptom however bad would get in the way of my normal working life… In Autumn 2010, I was experiencing some of my typical Crohn’s symptoms but I was quite busy with work and so decided I would just use some ‘quick fixes’ temporarily just to get through the busy few weeks I had in front of me. This came to a climax one Saturday evening. I had been spending the evenings of that week working on a theatre show in the orchestra pit. By the last show on the Saturday I could barely sit down from pain and I ended up going straight to hospital the next day. Long story short, It turned out I have an abscess which needed draining immediately.

I learnt a hard lesson that giving in to work pressures ultimately led to more suffering and a prolonged time off from working. Since then I always err on the side of caution and intervene early, before my symptoms get out of hand and as a result, I have never had to back out of any work commitments since!

It was at this time that I also sought advice on benefits. If you ever find yourself facing the thought of taking time off work and are worrying about the pressure of losing salary, I urge you to speak to your IBD nurse, or even the DWP as you may well be entitled to some financial help if your relapse is forcing you to take a considerable amount of time off work.

Whilst I can thankfully say I am in a period of relative stability at the moment, I am far from being able to lead the everyday life of a typically healthy person. I do my best to maintain a positive attitude however, by remembering that not long ago, I was in hospital having surgery. I may not have achieved my ultimate goal of remission yet, but I have moved a long way towards it from where I started. Over an average week, I probably work between 15 to 20 hours a week. In addition I have all the travelling between the various schools, other teaching and gig venues. Although the number of hours I work in a week may be considerably less than most, all the travelling between my various places of work can really take its toll, even though I do all my travelling in the comfort of my own car. But I rest when I can and when I need to. I also remember that I AM working, which a lot of people with Crohn’s less fortunate than myself may not be able to do.

Now, I have just turned 28 and since my major surgery four years ago in 2011, I have still been living at home with a parent but am finally in the position where I feel confident enough, and earn enough money to move out and achieve my long-sought independence, which is another milestone on my journey towards remission in health and happiness in life!

Thanks to Adam for this Crohns blog post. Adam is a member of the forCrohns committee and created and manages the forCrohns Buddy Scheme.  Adam is a drummer for the band Funk Republic, available for weddings, barmitzvahs and more! 

To celebrate the forthcoming launch of Book forCrohns, we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We’d love you to contribute, find out more here.

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