John’s Story

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I was diagnosed with Ulcerative Colitis in my early fifties, which was successfully managed for ten years before turning very nasty indeed. I had several abdominal operations to remove my lower bowel and install a stoma.

I had a bad experience post-op and swelling meant a gap developed in my abdomen. Things got worse, and eventually a fistula appeared (which is an abnormal opening). This was declared inoperable in 2012 and has become a permanent feature of my life since then. It has always been prone to infections which have become more frequent and unpleasant over the last three years. I now require longer courses of ‘heavy duty’ antibiotics, and more frequently than before. During one twelve-month period I had antibiotics on 103 days. They were mostly 14-day courses of two different antibiotics taken simultaneously.  On several occasions, I’ve needed intravenous (IV) antibiotic treatment in hospital when I developed a high temperature and raised pulse, as doctors knew I was at risk of developing sepsis.

My mobility is now greatly restricted, there is frequent, significant pain, and even the microbiologists have considerable difficulties identifying ‘guilty’ bacteria when swabs are submitted. This means that antibiotics can be a bit ‘hit and miss’ in terms of effectively treating any resistant infection present.

I have become very prone to infection and feel I live with low level infection most of the time now.  It’s the gram-negative bacterial infections that are particularly resistant to antibiotics and difficult to treat.

What impact did your experience have on you?

All through my 60s and 70s, I feel as if I’ve been living like a person several decades older!

Keeping busy and occupied with things I enjoy has been my strategy so far – but there is no doubt that enduring recurring infection places huge restrictions on my life. This includes how unwell I often feel as a result of both the infection and antibiotic treatment itself, together with the impact on planning and undertaking daily activities.

I’ve gone from a sporty lifestyle, where I enjoyed swimming, squash, outdoor sports and running to being unable to do any sports. Psychologically, it has also affected me. I had anticipated enjoying lots of foreign travel with my wife in retirement but cannot manage this – so that’s a loss to us both.

To what extent did your experience change your knowledge about antibiotic resistance?

I realised it is very difficult to get reliable information on infection, and especially antibiotic resistant infections. I decided to obtain information for myself and take a personal interest in my treatment and try to learn as much as I can.

I have studied antibiotics for some time now and appreciate that this situation of antibiotic resistance cannot continue indefinitely.

Looking to the future, however, I have found the research work being done by Antibiotic Research UK to be positive and encouraging. I am glad to financially support their ongoing work to raise awareness of the dangers of antibiotic resistance, find new antibiotic treatments and to support people like me struggling to overcome resistant infections.