Neil and Linda Nixon Grundy

This story is part of the Guts UK Pancreatitis Awareness Campaign.

On November 2018 Guts UK launched a campaign to raise awareness of pancreatitis and funds for research. Please help us by sharing this story on Facebook and on Twitter tagging @GutsCharityUK.

Neil and Linda Nixon Grundy’s Story

My husband Neil’s pancreatic journey started in March 2008. We had been on a date to Keilder Reservoir, where Neil slipped on the grass. Over a fortnight later Neil started to become very lethargic and wasn’t feeling too good. He kept refusing to get a doctor out or go to his GP. By this time I was starting to get worried so I gave him an ultimatum for him to give me his GP’s telephone number or I would call NHS Direct. His Doctor wouldn’t come out to see him as he had moved out of the surgery’s area, so I called the NHS Direct number and spoke to a nurse, who also spoke to Neil. Within 10 minutes of this call there was an ambulance at the door and they took Neil into University Hospital Durham. He was examined and was asked all sorts of questions, such as whether we had been anywhere or done anything out of the normal in the last few weeks. Neil told them that he had fallen at Keilder and was amazed that he hadn’t broke his camera, which was in his fleece top’s pocket. The doctor then sent him for CT and MRI scans and he also had a drain put into his stomach as it had become really swollen. They drained 15 litres of fluid out and Neil was told if I hadn’t called that ambulance he would possibly have drowned from the inside, resulting in his organs failing and possible death. After a week in Durham after lots of tests he was transferred to the Freeman Hospital in Newcastle, where he was rushed to the ITCU. Many more tests were carried out and it was found he had acute pancreatitis. It turned out that the camera had damaged his pancreas when he landed on it. A drain was inserted again to drain the remainder of the fluid from his stomach and they were talking of putting a tube in through the pancreas, to enable the fluid to pass through again but this never happened. Neil was in hospital for a total of six weeks, then he was allowed home and had to attend first monthly then six-monthly clinics, till he was eventually discharged around two years later.

Neil was fine for a good few years until shortly after his mother passed away in 2015. He then started getting really stressed with the way his sisters were handling their mother’s will, to the point he was starting to get pains in his abdomen just below his rib cage. We were worried about this and he went to our GP, who referred him to Gastro Outpatients Clinic. Neil attended this clinic for about a year but the Consultant was not always available (he was off sick and Neil was not seen by another Consultant). Also the Consultant threw his hands up in the air saying that he didn’t know what to do next, apart from taking his gall bladder and bile duct out. Neil was really angry and asked our GP for his help to be sent back to the Freeman Hospital and he was referred to another Gastro Consultant at our local hospital. His old Consultant and his team at the Freeman did further tests and everything was coming back normal but they kept having to drain his stomach and were becoming worried about his dramatic weight loss. He was referred to a dietitian at our local hospital where the fitted a NJ (nasojejunal) tube in to help build him up but this caused him lots of nausea. The Gastro Consultant also told him to stop taking Creon, which Neil had been prescribed before.

Neil and I were booked up to go to America in Sept-Oct 2017 to go meet our new granddaughter. About a fortnight before we were due to fly out I had a call at work from Neil. He told me to come home immediately, he didn’t want to worry me but he had woke up passing blood both ways and had got up to go to the toilet and passed out on the floor for about two hours. I found him lying in a pool of blood and called an ambulance. The Paramedic who came was brilliant, she would not let the ambulance crew take Neil out in a chair but she wanted him put on a spinal board, in case he had broken his back. They admitted him into hospital where it was found he had had a rupture of the oesophagus vein (hence all the blood), which could have been fatal. X-rays and scans showed that he had broken two of his lower vertebrae, which could have severed his spinal cord. They did an emergency operation on his back and inserted a 6 inch titanium plate to help fuse the bones. Consequently he didn’t go to America but insisted I had to go. The hospital discharged him with tramadol for the pain but after a couple of days of me being away he phoned for an ambulance to take him back in. On my return he was discharged and sent home with district nurses and dieticians popping in. Through this time he was constantly either in pain and feeling nausea from the NJ tube, which he often had to have reinserted. He was also finding it difficult to stand or walk about because he was incredibly weak and painfully thin, as he had no appetite or often when he asked for food and was given food he could not face it.

He had a CT scan done during a Clinic Visits to the Freeman four weeks after his vertebrae operation. This scan showed that there was a new liver lesion along with gross ascites. His Consultant treated this with antibiotics but he also wanted the lesion investigated further with an ultrasound and an MRI. However the MRI was put off for six weeks because Neil had recently had surgery on his back. The Consultant also requested further bloods to be done and he wanted to see all scans and reports made at the Gastro Clinic Neil had previously attended. He was diagnosed as suffering from traumatic right pancreatitis. Then on the 4th May 2018 he asked me to call an ambulance as he was suffering excruciating pain in his upper abdomen. He was rushed in to another local hospital after spending a week on the Medical Emergency Ward. While he was being attended to by a doctor I found out they only had access to his medical notes from his stay in hospital in 2008, so I gave the Registrar a copy of the current letter from the Freeman showing his recent treatments and investigations and also the names and phone number of his Consultant at the Freeman. Whilst he was in this ward he had another couple of drains inserted along with lots of tests. They discovered that along with his ascites that Neil now had cirrhosis of the liver. He continued being in great pain and very fatigued and the Consultant on the Liver Ward decided that Neil would be moved to the Hospice, as they could do nothing more for him on that Ward other than a transplant. Neil was admitted into the Hospice and we were allowed to stay with him. After admitting him they removed the NJ tube and were just giving him water but after a few days he was struggling to drink this so the just were giving him a sponge lollipop dipped in water. That was stopped too and they continued to keep him comfortable and after eight days Neil passed away on 24 May 2018 aged 61 years. The Hospice where Neil passed away had an Alcohol Tolerance Policy and they told me that as Neil had said he had been a heavy drinker in his past, the Coroner stated his death as alcohol related.

What can you do?

Join in our Kranky Panky Weekend fun and fundraise for more pancreatitis research with Guts UK. Check out some of our fun ideas here!

Guts UK is proud to fund the only fellowship into pancreatitis in the UK. However, one fellowship every three years is not nearly enough for this potentially deadly condition with no specific treatment. We need to do more. Help Guts UK fund more research to find a treatment for pancreatitis by donating today.

More information

Find out about acute and chronic pancreatitis in our Conditions section and read tips and suggestions on how to manage chronic pancreatitis from those affected by this condition.