Sylvia's Story

At the end of October 2015 I was suffering with a really painful shoulder, and although I hate going to the doctor's and taking tablets, I decided I must pay them a visit.  I was prescribed naproxen an anti- inflammatory tablet, which I started taking immediately.  I carried on with life as normal, but whilst at my weekly Zumba class I felt unwell, left the class and promptly fainted.  I didn't feel well for the rest of the day, but put it down to the tablets, although I had only taken 5.  During the night I got up to go to the toilet and fainted again - something I'm not in the habit of doing.  The next morning I passed a really black sticky stool and realised something was not right.

It was a Saturday morning and our doctor's was closed, so I went to the walk-in centre, and explained what had happened.  They took my blood pressure, asked how I felt, and rang for an ambulance.  After further tests at A&E I was admitted to the Leicester Royal Infirmary.  My blood count was very low. The following day I was taken for an endoscopy and I was told that something was showing but they thought it was a polyp with ragged edges.  I was then sent for a CT scan which showed up a 7.4 X 7.3 X 7.5 cm gist.  I was prescribed Omeprazole to help heal the abrasion.  My blood count was still very low, so I was prescribed iron tablets and later given a blood transfusion.  I spent 7 days in hospital before being discharged with iron tablets and omeprazole.  I was told I would need surgery to remove the gist.  I returned to see the surgeon Mr Exon in December, who advised that until he operated he couldn't be sure what he was dealing with, and it could result in the removal of partial or 80% of my stomach.  He thought that the naproxen had probably aggravated the gist and caused it to bleed.  I later saw the anaesthetist and he advised that Mr Exon was hoping to remove the gist by keyhole surgery

I was admitted for my operation on the 3rd February 2016 and operated on the following day.  I was brought round in Intensive Care.  Mr Exon came to see me and told me he had been unable to do keyhole surgery and it had been a tricky operation which had taken 31/2 hrs.  He had moved a 8-9cm gist which had obviously grown since the original diagnosis.  Some of the surrounding tissue had also been removed.  The gist was growing out of my stomach and had attached itself to my pancreas, so 25% of my stomach had been removed and my pancreas shaved.  I was in intensive care for 3 days before being moved to a general ward.

After the epidural was removed I chose to just take paracetamol for pain relief to see how I got on, as I didn't like the sound of the side effects of  the other pain relief options which had been explained to me.  I was also prescribed lanzoprazole to enable the tissue to grow over the staple in my stomach.  I had a catheter and also 2 drains from my side so they could monitor the fluids.  I found the drains really uncomfortable but only because they are just hanging when you try to move around.  I was discharged after 11 days.

The first week I was fine but then I began to feel unwell; I had severe pains in my left side and the drain wounds were weeping.  After speaking to the Macmillan nurse I was advised to take buscopan and see my doctor.  The drain wounds were infected, so I was prescribed antibiotics. These seemed to clear the infection, but the wounds erupted again and  I went to see Mr Exon, who applied silver nitrate, which cured the problem.  Early May I had another CT scan and saw Mr Exon for the results, he advised me that the gist was low risk and he had been able to remove all of it and nothing else was showing on the scan.  I was discharged with no further medication or follow ups.   In total I had lost 1 1/2 stone of which I have put 1/2 stone back on, I eat well but perhaps not as much as I used to, I also have a 15cm horizontal scar under my bust and 2 scars where the drains were.  The shoulder continued to ache so I had a couple of appointments with a sports physio and pleased to say that is now fine.  I realise I have been extremely lucky but I do wonder if it hadn't have been for taking the naproxen how long it would have been before any symptoms had shown up.

Whilst in hospital a lot of interest was shown in the gist, I had a visit from a team of junior doctors, and one asked if she could use me as a case study - fame at last.

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