Sweeney’s Peutz-Jeghers Story – My Dance with Death

On the 16th of October 2014, I came three hours from death in an experience that changed my life. After being rushed to the hospital, tested all night and eventually operated on, it is a sheer miracle that I managed to survive and push through to where I am today. I’m James Sweeney, and this is my Peutz-Jeghers Story, what I refer to as “My Dance with Death”:

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On October 15th 2014, I was 15 years old in Year 11 at Cwmtawe Comprehensive School, studying for my GCSEs. Being a Year 11 student, I was allowed to go out into my local town to pick up my lunch from one of the shops, and on this day as I had a free period before lunch, I decided to go to Tesco and see what I was feeling like buying. I didn’t really fancy much for food on the day so I quickly picked up a sandwich and a bag of Walker’s Salt & Vinegar crisps and walked back to school.

As soon as I started to eat my food, I felt a tough punch in my stomach and I began to feel this incredibly harsh pain from somewhere inside of me. I went to my year group’s communal area, which was in the Humanities Department, to see if I could ask one of the teachers if I could go and see the nurse. My Head of Year gave me permission so I went to the nurse’s office to see if she could help me.

When I told the nurse what had happened and how I was feeling, she thought that I was faking it. Assuming I was lying, she sent me back to my year group’s communal area. After about another 10 minutes, the colour started draining from my face and my Head of Year and one of my teachers could see that I was not well whatsoever. They took me to the nurse’s office again, demanding that I was to be sent home to recover.

My mother came to collect me from school, taking me back home. At the time, we had been arranging a surprise party for my dad, for his upcoming 50th birthday party two days later. The pain that I was feeling in my stomach continued getting worse, no matter what we tried, it wouldn’t go away.

We tried every possible thing we could think of, from putting salt in some water to drink to a hot water bottle, painkillers to a warm lavender bag, however, nothing worked; the pain continued getting worse and worse.

My dad got home from work at around 6 pm and by this time I had already been sick and was nearly crying in pain. When he got back we decided to go to the hospital to see what was wrong with me. We got in the car and drove off to Neath Hospital – which at this point, I couldn’t really walk unless I had one hand firmly placed on my stomach, as that was the only thing that made me feel a little bit more comfortable.

When we arrived, I had the usual tests done and was told that it was probably just stress or some form of stomach bug that would clear up in a few days. They did a scan that revealed, to which the results were assumed to be that my stomach was filled with air. Unfortunately, Neath was only treating Minor Injuries, so we drove to Morriston Hospital, where my mam works, to get some extra help.

It was around 7-8 pm and I could not walk without help from my mam and dad. The pain continued to intensify and I didn’t really know how much longer I could keep going. When we walked through the doors to Morriston A&E there was around a three-hour waiting time, if we were lucky, and there was a massive queue in front of us.

One of the nurses saw how pale and weak I looked and proceeded to ask me to enter the triage room. I, thankfully, was able to skip the queue and was seen by a doctor straight away.

The doctors initially told me the same as what they said in Neath – that it was probably due to stress or some form of bug – but I wasn’t having any of it. I was in more and more pain, so they ran a few tests. All through the night, I had different doctors poking and prodding my stomach, trying to figure out what was wrong with me, little did they know that they were actually making it worse.

At 3 a.m., I was sent for a CT scan and shortly after I was told that I was going to need a massive operation. My blood tests came back and I was informed that my stomach was not filled with air, as was assumed previously, however, it was actually filled with blood. The tests also revealed that my haemoglobin level, which usually stays over 130, had dropped to merely 47.

The doctors shared that I had, and still have, a rare condition called Peutz-Jeghers Syndrome. Peutz-Jeghers Syndrome causes polyps to grow throughout the gastrointestinal tract. As nobody knew that I had PJS, one of the polyps grew too big and caused my small intestine to twist, telescope in on itself and fill with blood.

I was sent into emergency surgery, where I had three feet of my small intestine removed, coming three hours from death. I was lucky they operated when they did, or else I wouldn’t be here with you all today. I didn’t know at the time, however, due to the severity of my condition and how bad a state I was in, my parents had to sign a lot of different forms, in case the worst happened during surgery.

I didn’t know whether I was going to wake up from the operation and was nearly speechless when going under the anaesthetic. The pain at this point was almost unbearable, so I was glad I got put to sleep when I did. After waking up post-operation, my surgeon told me that I had one of the biggest pain thresholds he had ever seen and he was surprised that I stayed conscious for as long as I did.

I woke up from the anaesthetic a few hours after to find myself in a hospital bed with a huge bandage covering my stomach. I had my obs checked every half hour by one of the nurses in the Intensive Care ward and after a while I had one of the doctors come in to tell me everything that had happened.

He told me that I had Peutz-Jeghers Syndrome, a condition which I had never even heard of before. To be diagnosed with PJS, you need to have at least two of the three criteria. The first symptom was family history, which I do not have; I am a spontaneous case and I have started a new chain of PJS, so if I have kids, there is a 50% chance I could pass the condition, caused by a mutation in the STK-11 gene.

The next criterion was the presence of mucocutaneous lesions, which cause hyperpigmentation in places like your lips. I have a lot of freckles naturally and, what we thought were freckles on my lips, were actually these, confirming the first criterion. The third criterion is hamartomatous polyps, which I were the key cause of this experience and are located throughout my body, confirming the diagnosis.

I stayed in the hospital for 8 days. Due to everything that happened, I had to learn how to walk, climb stairs and even walk independently right from scratch. After about six days in the hospital, it came time for me to have my plaster removed, another terrifying moment.

Here I found out that I had a six-inch scar down my stomach and that I had 26 staples, holding the scar together. When I first saw the scar and staples, I didn’t take it very well at all, however, this was only natural.

I eventually got past the initial reaction to the staples and decided to look at them more as the things that kept me alive and allowed me to be the person I am today. I was admitted from the hospital and allowed to come home on the 24th of October – glad to be back on the road to recovery.

I was told that I was going to have to come back into the hospital after two or three weeks to have the staples removed, which was a painful thing to have done, but I got through it thanks to the wonders of gas and air.

My surgeon told me that I should not go back to school until January 2015, however, I was driving myself insane staying at home, so decided to return in mid-November 2014. The school allowed me to leave classes 10 minutes early, to avoid the school rush and get to classes on time. I still had quite a large plaster covering my stomach, which needed to be changed every week or so by a nurse.

I returned to school right before the mock exams were about to start. For some reason, I thought that I should sit the exams, not my smartest move, I know. It was here that I found that stress causes me a lot of pain, leading me to leave the exam room quite a few times for a break and to help stretch the pain away.

A few weeks after I came out of the hospital, my mother showed me the x-ray results of the scan that I had when I was admitted into the hospital on the night of the 15th/morning of the 16th of October. The scan shows the large polyp blocking my small intestine, and a little bit before the blockage you can see a salt and vinegar crisp and all of the painkillers that I had been taking.

As they couldn’t get through to be digested, they gave me no pain relief at all – typical!

Due to the nature of the condition, I will have polyps growing for the rest of my life. These are removed through operations/procedures, with annual-biannual intervals. I am also more likely to get cancer, however, I am closely monitored and have regular scans, which help avoid this.

It took me a long time to return to some form of ‘normal’ after the whole ordeal. I did find that some things were never going to be the same. I was particularly nervous about returning to swimming, as the scar would always draw people’s eyes to my stomach – this is something that I would later coin as “scar anxiety“, which I am on the whole past at this point.

PJS has played a huge role in my life, and although this “Dance of Death” is one of the most vulnerable and personal stories I have ever shared, I do this with the hope that it will help others who might be living with the condition. I’m proud of my condition, for it is a part of who I am.

Without my scar or my regular procedures, I wouldn’t be here, and to everybody who helped me back in October 2014, thank you from the bottom of my heart. You helped save my life, and for that I will be forever grateful ❤

Thank you all for reading and I hope you have a great day!

James Sweeney