Sharon experienced recurring UTIs, until one day she was told she had ESBL E Coli – bacteria which are resistant to many antibiotics.
I have had quite a few health concerns and illnesses over recent years – including 3 heart attacks at age 38 in 2010. I have also had bladder and bowel problems which required a sacral nerve stimulator to be fitted in March 2019 onto my spinal cord to allow bladder emptying to occur.
In June 2019, I developed sinusitis at first, then 3 weeks later I developed a urinary tract infection (UTI) – something I’d had before. My temperature had risen to 41.7 degrees, I had pelvic pain and I was at home feeling so ill. I didn’t want to get out of bed to go to hospital as I had no energy, nor call an ambulance even though I could hardly speak or breathe. Eventually my husband persuaded me I had to go to A&E as he realised that I was really ill.
I knew something was really wrong at A&E and then I realised it was sepsis. I recognised the same symptoms from when I’d had sepsis 4 years before.
I was treated with oxygen and an intravenous antibiotic. Then after a few weeks, a member of staff came into the ward and simply told me “you’ve got ESBL E Coli” and moved me into an isolated room, but without telling me why. Sadly, no one sat down with me to explain what ESBL E Coli was, or how I got it, why it made me so ill, and no one gave me any information about living with it. I also struggled with all the questions I was asked about my lifestyle, as the staff were investigating and testing for infections including HIV and Sexually Transmitted Infections. I was absolutely mortified and embarrassed by all these questions – especially as I am a happily married mother of three teenagers!
The whole experience was so frightening – especially when I was in A&E, and thought I was dying. But I was then left in an isolated room with all these questions about ESBL E Coli. I really wanted someone to sit down and explain what it all meant, why I became ill, and what it means for the future? I was eventually discharged home to begin recovery. Unfortunately, I was due to have more medical procedures and tests but these all had to be cancelled or postponed because of the sepsis and infection I was recovering from.
What impact did your experience have on you and your family?
After I got home, I found it very hard to try to get back to being myself again – as I found I hardly laughed any more, I no longer enjoyed jokes, and had lost my enjoyment in things I previously liked. I realise now that these can be after-effects of sepsis.
It was a very upsetting time for my family too. The evening before I became ill, my husband had cooked dinner at home – and he thought he’d given me really serious food poisoning and felt really guilty. As none of us had heard of ESBL E Coli, we were all confused as to where it had come from, or if it was something we had caused! It really worried me that I might spread it to my family too like other infections like colds and flu – but I now know its unlikely.
I think that if we had been given proper advice and explanations about what I had, it would have saved a lot of unnecessary worry and upset for both me, and my family. It was a very scary time not knowing what had caused me to be so ill and to spend 3 weeks in ICU on IV antibiotics.
To what extent did your experience change your knowledge about antibiotic resistance?
I now know so much more about resistant infections caused by bacteria like ESBL E Coli from information that Arlene, the Patient Support Officer, sent me. For example, if I get a UTI again I should probably see a doctor quickly to see if I need treatment, and if so, to be sure what antibiotic will work best. I also realise that resistant infections like ESBL E Coli can be hard to get rid of and can sometimes go on to cause sepsis if left untreated. The most important thing I’ve learned is that I may have to be kept in an isolated room if I am in hospital again – so the antibiotic resistant infection won’t be spread to other vulnerable or sick patients on the same ward or by the staff treating and looking after me.
And now I am home, I know I can look after my own family as usual, and that hand hygiene is the best thing I can do and teach my own family to avoid picking up bugs which cause serious infection.