17 years of gastrointestinal surgeries and the constant fear of AMR

My name is Hayley Bailey. I’m 46, and I live in Johannesburg, South Africa. I’m actually a relatively private person and didn’t have any intention of publicly sharing my story, however, I recently realised that speaking up could empower others facing similar challenges.

My journey of “medical hell” began in 2007.  I suffered from endometriosis and cysts for many years and went into hospital for a routine operation. I was told it was simple and that I would be home by the weekend.  The very next day, I felt something was wrong. My stomach began to swell fast.  At first, they told me it was just gas! Four days later, I slipped into a coma and was rushed to the Intensive Care Unit (ICU) where they discovered that my colon had been slit while having the cysts removed. I had no idea of the nightmarish path I would be on from there.

I spent three months in the ICU due to severe septicaemia (sepsis) and was on life support because both my lungs collapsed. A large part of my colon and stomach had to be removed due to the sepsis. Medical staff told me numerous times that I should never have survived. I was eventually discharged, weighing a mere 25 kilograms.

My infection count (which should be between 0 and 5) was over 300, and no matter which antibiotics I was given, the infection remained present. By October 2007, I had a hernia, and the muscles in my stomach had completely split. Between 2008 and 2017, I had twelve operations to attempt to insert mesh, but each time, my body rejected it.  

Then, in March 2018, I was severely ill with stomach and breathing issues as a result of something called Nutcracker Syndrome.  They performed a full stomach bypass. I had complications with my gall bladder, and things were extremely out of control. A week later, I went into septic shock, and yet more surgeries followed.

Struggles with my bowel and stomach continued for many years, with months spent in hospital in severe pain and suffering greatly.  In 2022, I was very ill and was told that I had an infection called C. diff (Clostridium difficile), which is a bacterium that causes severe diarrhoea and inflammation of the colon. It is often triggered by the use of antibiotics, which disrupt the balance of healthy gut bacteria, allowing C. diff to multiply and produce harmful toxins. I was initially placed on metronidazole with little improvement and then vancomycin. A Fecal Transplant was on the cards at that stage. 

I was admitted to ICU with sepsis for a second time and in hospital for just over six weeks when I was supposed to be there for two nights!

In May 2023, I was admitted once again to the hospital for seven weeks as my feeding tube became terribly infected. Again, no matter which antibiotics they gave me, the wound would not heal, and I had to go back to a nasal tube for eight weeks. I needed to have two different lines going in, and due to non-compliance by staff, both these lines got infected.

I now live with gastric paresis, complete intestinal failure, short bowel syndrome, dysmotility, Chronic Intestinal Pseudo-Obstruction, and a frozen bowel. This means I can’t absorb food, so I am drastically malnourished and labelled as terminally ill as it can’t be fixed. I can’t grow a new stomach or colon and would never survive a transplant.

I’ve had to learn so many life lessons I wish I’d never had to. It has broken me but also made me stronger, and I know I’m a fighter, not a quitter. I’m not ashamed of who I am or how I look. I am proud of how far I’ve come and who I am today despite all the setbacks.

Even though there have been tremendous financial setbacks, pain, suffering and a time I was ready to give up, I believe that there has to be a reason I’m still alive. One of my desperate hopes is that antibiotics continue to treat these life-threatening infections I have.