My Health Experience: ‘I will never be able to eat normally again’

Having lost most of my large and small intestines, I cannot digest and must be fed all of my food intravenously

Since September 22nd, 1990, the day I was involved in a serious accident that I was incredibly lucky to survive, I have not been able to eat normally and I will never be able to eat normally again. Having lost most of my large and small intestines in a 90-ft fall, I can’t digest or absorb food normally, and I would die of starvation and fluid loss if I were not fed intravenously: that is, directly into my bloodstream.

My accident happened on the day of our third wedding anniversary. I am 51 now but I was 23 when I fell from the top of the quarry where I was working and landed on the quarry floor. I had been working on an overhanging ledge when it gave way beneath me and I catapulted backwards.

I tore my fingernails trying to find something to grab on to on the way down, but I couldn’t find anything. I was fully conscious throughout the whole thing. I remember lying there, not able to understand why I couldn’t get up. Two of my friends were down beside me like a shot: they climbed down ladders to get to me. Another man who had first-aid training stayed with me until the ambulance arrived from Portiuncula Hospital in Ballinasloe.

The next problem was trying to figure out how to get me out of there. I was tied to a ladder, which had to be dragged up the face of the quarry by members of the fire brigade. Then I was rushed by ambulance to hospital. I remember being taken for X-rays, and then nothing else for hours.

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I was taken to theatre where the surgeon, Mr Flynn, operated on me. I had a lot of burst blood vessels which he spent hours tying up to stop me bleeding to death. I fully believe that I would be dead only for him: he kept me alive until I got to Dublin. My intestines were very badly damaged and I had a perforated lung.

As I was being brought out to the ambulance to be transferred to Dublin, I heard one of the doctors saying, “If you get him to Dublin inside an hour, he might have a chance.” I was rushed straight to theatre when we got to the Mater but my gut was so badly damaged that most of it had to be removed. I spent almost 10 months recovering in ICU and then on the wards before I came home again.

While I was in the Mater, I was introduced to Total Parenteral Nutritional (TPN) support, which was fairly new to Ireland. When your intestine fails, the only way to be kept alive and healthy is to have TPN, which means you are fed all the nutrients and fluid you need through a line into a central vein in your chest. I was trained in hospital in how to care for the line and how to set up a feed at home.

Sterility is so important when doing Home Parenteral Nutrition (HPN) because infection is an ever-present danger for people like me. If bacteria gets into the line, it goes directly into the bloodstream and causes sepsis. One year, I had 48 admissions in 52 weeks with infections and septicaemia. It was an awfully scary time. I often thought, this time I won't be coming home. It was very tough on my wife, Rita, too. My working days were finished the day of my accident but we had a mortgage so she had to keep working. I had dropped from about 16 stone to six stone and she didn't know if she was going to become a widow any day.

My consultant in Dublin retired and another consultant took over. About nine years ago, he was attending a medical conference in the UK where he mentioned my case to Dr Simon Gabe, a specialist at the Intestinal Failure Unit at St Mark’s Hospital in London. Dr Gabe told him he specialised in treating people like me.

My consultant told me that he thought I was going to die if I didn’t go to London for treatment, so it wasn’t a difficult decision to make. We were flown to Heathrow by air ambulance under the E112 Treatment Abroad Scheme the next day, and an ambulance from St Mark’s was waiting for us.

I spent eight weeks in St Mark’s that first time and it really changed my life. They made me go through the procedure as if I was doing it at home, the way I had been trained. The TPN nurse, doctor and nutritionist said they couldn’t understand how I was alive at all. They explained that I had been introducing the infection into the feed myself by injecting a vitamin into the bags, which I shouldn’t have been doing at all. They also changed the calories in my bag as I was quite thin and anaemic. I had a lot more energy as a result of that.

The team at St Mark’s trained me to use the TPN/HPN properly and I have not had one infection since my first visit there. I have been back twice since then for check-ups but since the cutbacks here, the HSE has been putting every obstacle in my way to get the E112 form.

At home, my bedroom is as sterile and clean as a hospital ward. I take my TPN every night while I am sleeping. It takes me only about 15 minutes to set the whole thing up and the same in the morning to go through the procedure in reverse.

I do eat small amounts of food to take away the hunger pangs, and for the taste, but I can’t absorb it. My health is fairly good at the moment and I’m in great form. I can do light jobs although I get out of breath easily because I have only one lung.

I want to make it clear that I am not blaming any doctor or nurse for what happened to me. The problem is that there is not enough experience or training in Ireland to deal with patients like me. We end up relying on the medical nutritional companies that supply our feed for advice and support.

There is a real need for an intestinal failure unit in Ireland, just like St Mark’s, where the staff are properly trained to advise the patients in how to use TPN at home.

In conversation with

Michelle McDonagh

Michelle McDonagh

Michelle McDonagh, a contributor to The Irish Times, writes about health and family