6 years ago yesterday I got rushed into hospital and was diagnosed with Peutz-Jeghers Syndrome. I was only 15 years of age when it happened and I am eternally grateful for all of the work that the surgeons, doctors, nurses and more did to save my life when I was but 3 hours away from what would have been my unfortunate death.
I am James Sweeney and this is my Peutz-Jeghers Story, My Dance with Death:
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On October 15th 2014, I was 15 years of age and was currently in Year 11 in Cwmtawe Comprehensive School, studying for my GCSE’s. 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 really hard punch in my stomach and I started 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 and that I was lying, so sent me back to my communal area. After about another 10 or so minutes, the colour started to drain from my face and my Head of Year and one of the years registration teachers could see that I really was not well so took me to the nurse’s office again and demanded that I was to be sent home to recover.
My mother came to collect me from school and then we went back home. Over the past few weeks at the time, we had been arranging a surprise party for my dad, as he was turning 50 on October 18th 2014. The pain that I was feeling in my stomach continued to worsen as the day went on, and no matter what me and my mum tried, it would not go away. We tried every possible thing we knew and could think of, from sugar and water to a hot water bottle, painkillers and even a bath, but nothing worked.
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, as the pain just kept getting worse and worse. We got in the car and drove off to Neath Hospital and I could not 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 got to the hospital, 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 that my stomach was full of air, which they thought at the time was caused by something like stress. Unfortunately, Neath was only treating Minor Injuries in A&E so we drove to Morriston Hospital, where my mum works, to get some help.
It was around 7-8 pm now and I could not walk without help from my mum and dad. The pain continued to intensify and I didn’t really know how much longer I could keep going for. When we walked through the doors to Morriston A&E there was around a 3 hour waiting time if we were lucky, and there was a massive queue in front of us. One of the nurses saw how ill I looked so asked me to enter the triage room and let me skip the queue, fortunately, and got me seen by a doctor straight away.
The doctors initially told me the same as what the ones in Neath said and said that it was probably due to stress or some form of bug, but I wasn’t having any of it and 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 see if they could figure out what was wrong with me, and little did they know that they were actually making it worse.
At 3 am on the 16th of October, 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 told that my stomach was not filled with air, as we were told previously, but it was actually filled with blood. My blood tests had also revealed that my Haemoglobin level, which usually stays over 130, had dropped to 47.
The doctors informed us that what had happened was that I had, and still have got, a very rare illness called Peutz-Jeghers Syndrome. Peutz-Jeghers Syndrome causes small polyps to grow in the gastrointestinal tract. As nobody knew that I had the condition, 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 3 foot of my small intestine removed and was later told that I was only 3 hours away from death, so was very lucky that they operated when they did. I did not know at the time but 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 worse happened during surgery.
I didn’t know at the time whether or not I was going to wake up from the operation and for one of the first times in my life, I was nearly speechless when going under the anaesthetic. The pain at this point was almost unbearable so I was glad that I got put to sleep when I did. After everything happened my surgeon told me that I had one of the biggest pain thresholds that he had ever seen and he was surprised that I stayed conscious the whole time!
I woke up from the anaesthetic a few hours after the operation had finished to find myself in a hospital bed with a big plaster and bandage covering my stomach. I had my obs checked every half hour by one of the nurses on the Intensive Care ward and after a while I had one of the doctors come in to tell me what had happened.
He told me that I had Peutz-Jeghers Syndrome, a condition which I had never even heard of before this day. In order to be diagnosed with the condition, you need to have at least 2 of the 3 possible criteria. The first symptom was family history, which was the one that I did not have. I was told that I was a spontaneous case and that I have started a new chain of Peutz-Jeghers, so if I was to ever have kids, there is a 50% chance that I could pass on the illness, which is caused by a mutation in the STK-11 gene.
The next criterion was if I had any 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 for all of my life, really turned out to be the Mucocutaneous Lesions and confirmed that I had matched that criteria. The last criterion is Hamartomatous Polyps, which I do have and were the reason for me needing the operation in the first place, confirming the diagnosis.
I stayed in the hospital for 8 days and, due to everything that had happened, I had to learn how to walk again, how to climb stairs and more. After about 6 days in Hospital, it came the time for me to have my plaster removed. Here I found out that I had a 6-inch scar that went down my stomach and there were also 26 staples going down my stomach, over the scar. When I first saw the scar and staples, it is safe to say that I really did not take it very well, but this was only natural.
I eventually got past the initial reaction of 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 and was glad to be back on the road to recovery. I was told that I was going to have to come back into Hospital after 2 or 3 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, but I was driving myself insane staying at home, so we decided that I was going to go back in the middle of November 2014. I had an agreement with the school where I was allowed to leave classes 10 minutes early, so I could avoid the school rush and could get to my 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 came back to school right before the mock exams were about to start and for some reason, I thought it would be a good idea for me to sit the mock exams as well, bear in mind this was only a month after the operation, which was not my smartest move. It was here that I found that I get a lot of pain in my stomach when I am stressed, which did cause me to leave the exam room quite a few times for a break, and in order to cool down.
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 that was blocking my Small Intestine and a little bit before the wall you can see a Salt and Vinegar crisp and all of the painkillers that I had been taking floating right next to the polyp, as they could not get through to be digested, which meant that they gave me no pain relief at all!
Flash forward to now and it has been 6 years since I was diagnosed with Peutz-Jeghers Syndrome. Due to the nature of the condition, I will have polyps growing inside of me for the rest of my life, which are removed through operations, with 1-2 year intervals. I do also have to have regular cancer scans and get monitored very closely as the illness causes an increased probability of getting things like Cancer, but the extra monitoring is really good to have.
It did take me quite a long time to go back to normal after the operation and I did find that some things were never going to be the same. It took me ages to get back to Swimming, as I was really nervous about what people were going to say, but finally, I accepted that people were going to stare and make comments, it was natural and not something that I should be embarrassed about, I quickly learned to try and be proud of my scar and what it represented, the fact that without it, I would, not be here.
Peutz-Jeghers Syndrome has played a very large role in life so far and will continue to do so, but it is what makes me, James Sweeney and is something that I have learned to appreciate & embrace. I have been wanting to share my Peutz-Jeghers story for quite some time now, and as yesterday marked 6 years since it happened, I thought it was a great time to do so!
Thank you all for reading today’s blog, what do you think? This is the most personal blog that I have ever written on the page so I hope you have enjoyed it! If you would like me to write a bit more about my life with Peutz-Jeghers Syndrome, let me know and I will see what I can do.
What sort of blogs would you like to see on the page? Are there any series you would like to see me write? Is there a topic that you would like me to have a go at writing about? Let me know your thoughts about the above questions and about today’s blog in the comments below!
Thank you all for reading and I hope you have a great day!
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6 thoughts on “Sweeney’s Peutz-Jeghers Story – My Dance with Death”
A very moving read JC.
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Thank you Debbie! 🙂
Thank you for telling your story! I also have Peutz jeghers syndrome and have had 6 major surgeries. I can really relate well to you when you share about the doctors telling you that your problems are caused by stress. That has happened so many times to me. By the way, I also am the first one in my family to have this syndrome. Please keep writing about your PJS experiences. It helps to know someone can relate to me and the experiences that I have been through.
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Thank you for your lovely comment, Jenny! I’m glad you can relate to it, I am also the first in my family to have PJS. I’ll definitely keep writing about it, don’t you worry! I hope you have a great week 🙂
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