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Written on 3rd May 2019 by Julie Marsh

When 58-year-old nurse, Jan, went into hospital to have her colostomy reversed, she could never have imagined how much her life was about to change.

Jan had lived with the colostomy for a year after a bowel resection for diverticulitis and the reversal operation should have been the final stage towards recovery. She awoke after the surgery in excruciating pain and was given an epidural for pain relief. Over the next two days, her condition was allowed to deteriorate, developing into sepsis. She was treated with ineffective antibiotics and when she was finally taken back to the operating theatre, investigative surgery revealed a leak from her perforated bowel. Despite her continued post-operative deterioration, signs of sepsis and necrotising fasciitis were mistaken for post-surgical bruising and her ineffective antibiotic treatment regime continued.

A change of shift finally brought a nurse who had experience of nursing necrotising fasciitis. The nurse “smelled rotting flesh” and, recognising the signs, called the surgeon to review Jan’s condition. Jan was taken back to theatre for extensive debridement of her right flank, lower back and thigh. “It was huge,” says Jan, “like a shark bite,” and left deep scarring that she still finds upsetting whenever she looks in the mirror.

The infection raged on and Jan underwent multiple further debridement procedures. She became increasingly unwell with septic shock, ending up on the ITU suffering from multi-system organ failure, ischaemia, brachial thrombosis and extensive peripheral vascular compromise, causing gangrene in her hands and feet.

Jan has no recollection of these events throughout which she was semi-conscious from the strong pain medication. Jan’s first recollection is of waking up ten weeks after the original resection operation, completely unaware of her condition. “When I eventually came to, I remember looking at my hand. I couldn’t comprehend it at all.” She struggled to come to terms with the fact that she was potentially facing amputations. It was only months later, whilst sitting in a café with her daughter, that Jan asked to be told what had happened.

Jan was transferred to the Royal Free for the next stage of her treatment; “They did a skin graft on my thigh, removed my left hand and half my fingers [on the right hand], my toes on my left foot and half of my right foot. That was the most awful time for me, probably the worst time ever in my eleven months in hospital.”

Left in a closed room, isolated from the rest of the ward, with multiple recent amputations and the physical and emotional after-effects of her life-threatening illness, Jan received no counselling or psychological support. “I was very lonely. I was away from the nurses’ station and I was scared. I remember the physios trying to get me up walking. They took me down to the gym and I collapsed. I don’t think they believed how much pain I was in.”

The loss of the right leg came in stages. Initially, Jan had a mid-tarsal amputation leaving her with half a foot which never healed, despite five or six operations. 

“I was in so much pain from the sinus wound in the foot, especially when I had the dressings done. They gave me such strong painkillers that I was actually nodding off when I was eating. I remember the wound nurse from Hillingdon coming to see the wound on my foot and I said, ‘I’ve had enough. Let’s just take it off’. When I woke up after the below-knee amputation, it was fantastic. I didn’t have the pain. I was sore but I didn’t have the pain that I had before. When the physio came to see me and told me that he had come to help me with transferring to a wheelchair, I said, ‘What, like this?’ and I got up and did it. Little victories.”

Given her extensive disabilities, Jan understood that it was inevitable that she should lose her job as a nurse, but that didn’t make the news any easier to take. “I had been nursing since I was 17 and worked right up until the day before this all started. My manager and the HR came to see me while I was in hospital. That was very upsetting. I knew I wouldn’t be able to go back to work but when they actually came in to see me and told me…it was very upsetting.”

Going home was tough, bringing Jan face to face with the devastating impact that her sepsis, multiple amputations and consequent disability has had on her previously contented life.

“Three days before I came home the occupational therapist took me home [to see how she would cope]. I remember walking in there and looking at the pictures on the wall of our wedding two years earlier and bursting into tears.” Turning to her husband, Martin, Jan says; “Our relationship is very different. You’re still my husband but you are my carer.”