My perforated bowel - a result of undiagnosed Diverticulitis

On the morning of 17th July 2007 I was particularly happy. Summer Term had just ended so I had 6 weeks of holiday from my Teaching Assistant job ahead, my husband was coming back from a 3 week research visit to Australia on Friday and my first grandchild was due in August. Life seemed very good – I was listening to Women’s Hour, and my 16 year old son was asleep as usual upstairs. I felt a need to rush to the downstairs toilet and whilst sitting there fell forward with agonising and unexpected pain. I recall trying to shout my son’s name but being able to do so only weakly. After what seemed like hours, he arrived sleepily at the toilet door and asked what was wrong. I replied ‘this is the worst pain since childbirth’ (already acknowledged in my family as the gold standard for pain after two 3 day labours!) and he said’ better ring an ambulance then’……I recall a paramedic trying to open the toilet door to get to me, and then…….

I awoke 8 days later in Intensive Care.

So this part of my story is what everyone told me later. I was admitted to A&E and there were several hours of uncertainty as to what was occurring. Fortunately an experienced Consultant passed by and noticed how ill I was and took over the case, sending me for an X-ray which revealed air in the abdomen which meant a perforated organ, probably a bowel. He arranged for emergency surgery as the contents of the bowel would be leaking into the body effectively poisoning my system. My son called his best friend’s mother (and my friend) who came to the hospital and spoke with the consultant who said that my husband should be called as there was an 80% and rising chance that I would die in the next few hours. She made the call to my husband in Sydney and then passed the phone to the doctor who explained that I was to go into emergency surgery for a perforated bowel, would probably not survive and he needed to return at once. My husband immediately left for the airport where Singapore Airlines got him onto the next available flight to the UK with 32+ hours of travel ahead not knowing what he would find on arrival. As my son was only 16, they also called my brother as someone could be needed to make life and death decisions and my friend was asked if my husband would trust her to make those decisions in the meantime. The operation took place in the middle of night and lasted several hours – nearly a foot of bowel was removed and a stoma created to allow the bowel to heal. There had been a lot of bowel content dispersed over the body and severe sepsis had set in and after the surgery I was taken to ICU ventilated and sedated and not expected to survive.

My elder son was also called back from Sri Lanka where he was volunteering in a children’s home – he was called by his elder brother, my husband’s oldest son, who also arranged for a car to meet my husband at Heathrow and called him in Singapore to update him on the situation. It would be his story to describe his feelings but it doesn’t take much imagination to realise what a nightmare journey that must have been.

He arrived back very early Wednesday morning and the taxi driver rushed him to Leicester from Heathrow and to see me in ICU – the usual frightening scenario with lots of tubes, machines breathing for me, feeding me through tubes and monitoring all my vital signs.

Over the next few days his life had the nightmarish quality you would expect – hours at my bedside and then going home to deal with phone calls from family and friends and feeding the children, doing the washing and trying to keep some sort of normality in the home, whilst being told that the staff were concerned that I had not come round and each day like that was increasingly worrying.

I meanwhile was in a horror movie in my head where I was being held prisoner in the desert in the Middle East and then taken to an institution where I was to have my organs harvested whilst I was still alive. (I later learned that such hallucinations are normal and a result of both the drugs given and the general sedation experience).

When I awoke I saw my husband hovering at the end of the bed like a hologram and assumed it was some new Skype phone development where he could send me his picture whilst telephoning from Australia. He was unable to convince me that he was actually in the UK or that I had had emergency surgery and a colostomy. I assumed that the staff were lying to him too (paranoia is also a key feature of a stay in ICU).

Eventually I was transferred to a general ward where I spent 5 weeks recovering, and was discharged with a colostomy and a massive 11” long open wound – my abdomen had burst open after the surgery because of the systemic infection I had. Naively my husband and I thought that the wound would close in a few months and I would regain my strength and become one of those people where others said “Isn’t she marvellous, she’s had a colostomy but you’d never know”.

In fact the wound was still open when I returned to the hospital 11 months later to have to colostomy reversed - it never healed. This second surgery resulted in an ileostomy which was also reversed 6 months later, and another 12 months later I had my fourth surgery in December 2009 to repair the large incisional hernia the other operations left me with. I adapted well to having a colostomy, being in a wheelchair for a period, and to every aspect of my life being medicalised. I found the support of organisations like the Colostomy Association invaluable but was increasingly irritated by the stories of how so-and-so had climbed Everest with a stoma, or travelled round China or the Amazon basin. I’d never wanted to do those things before I was ill and I certainly don’t now. I found the incessant cultural clamour to be a ‘brave’ patient, to bear quietly and stoically my misfortunes, and to keep quiet about them as the months went by and family and friends were ready to move on and I wasn’t, particularly difficult.

I can only thank all the NHS staff who took care of me so well in those three years.

It is now over three years later and I am writing my story down because I couldn’t find out anything about perforated bowel when it happened to me, and I want someone to read this knowing that they are not the only person it happens to, and you can return to health afterwards. I would also recommend the website ICUsteps which is very helpful to people who’ve been in Intensive Care.

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