Rob and Kay Sandham
This story is part of the Guts UK Pancreatitis Awareness Campaign.
Rob and Kay’s Story
My name is Kay Sandham and this is a story about my partner Rob. Rob went to bed as normal on Saturday 21st August 2010 and woke up at 5am Sunday with horrendous stomach pains. He was bundled into the car and taken to the local hospital where he collapsed on the waiting room floor and was taken into a room for investigations. Within an hour they had diagnosed a condition called pancreatitis, which the hospital said in most cases settles down in 48 hours. Rob was admitted to a ward with morphine and oxygen. On 24th August problems developed with his breathing and Rob was transferred to the High Dependency Unit (HDU) so his breathing and blood pressure could be monitored. The Consultant adopted a ‘wait and see’ approach and was confident it would settle down quickly on its own. After three days on HDU they decided Rob was well enough to be transferred back onto a normal ward, although he was still having problems breathing. He was moved into a side ward on the 27th August and remained on the ward over that weekend, where he continued to be very unwell, unable to eat, very bloated and catheterised. An earlier scan seemed to indicate that the pancreas was not damaged, and therefore not likely to necrotise (tissue death), but gallstones were identified as the cause. The treatment was strong pain killers and oxygen.
On 28th August Rob’s temperature was extremely high and his vital signs were unstable. He was prescribed antibiotics and a feeding tube was inserted to administer feed overnight; this remained in place until October. He remained in hospital feeling very unwell; he actually seemed to be getting worse and was very depressed by the lack of improvement. Various methods of pain relief were tried including a TENS machine (transcutaneous electrical nerve stimulation). On 9th September a second scan revealed that the pancreas had been damaged and was likely to necrotise, so a request for a referral to the specialist unit at the Freeman hospital was made. From the 9th to the 18th September we waited at the local hospital while he got worse and worse. The Consultants tried various antibiotics and a blood transfusion but nothing worked and at this point I thought he was going to die. On Saturday 18th September the Registrar was so concerned he called in a senior Consultant, who immediately rang the Freeman and informed there was nothing further they could do. The plan was to transfer him back to the HDU at the local hospital but there wasn’t a bed. An anaesthetist came in to talk to us and she explained that Rob needed to go to the Freeman for specialist surgery and unless he did he would die as they did not have the expertise at that hospital. Another blood transfusion was done on the 19th September. They were also having problems putting in a cannula because all his veins had collapsed. On 20th September Rob’s Consultant wasn’t hopeful the Freeman would accept him but then the nurse came in and said the best words anyone has ever said to me: ‘There’s a bed at the Freeman’.
On Monday 20th September Rob transferred by ambulance to the Freeman. We arrived on the ward and it became apparent that he had gone from being one of the sickest people at the local hospital to looking relatively okay compared to other patients. The advice at the Freeman was that they would leave the condition to see if it would settle. A Consultant was assigned to the case and antibiotic were continued. The move entailed a 70 mile round trip to visit Rob every day but it was worth it to be under specialised care. On Wednesday 22nd September a drain was inserted to start draining fluid that had collected near the pancreas. The antibiotic was stopped. On Friday 24th September Rob collapsed, vomiting blood and unable to maintain body temperature, blood pressure, pulse, etc. He had developed sepsis, which is common amongst pancreatitis patients who suffer from necrosis. Rob was visited by a different Consultant who specialised in the treatment of cases as complex as Rob’s and he took over the case. He explained that chances of survival had improved to 70% with the treatments he and his team had developed but there was still a long road ahead; we would be looking at December for release from hospital. They secured a bed in ITU for Rob overnight but it wasn’t needed. On Sunday 26th September a second drain was inserted to try and drain another pocket of fluid. Rob received another blood transfusion on Monday 28th September and on Tuesday 29th September he had a first procedure to flush out the pancreas and remove the dead tissue (this is a process whereby the go in, hack away at the dead tissue and then flush it away). On Sunday 3rd October he received second procedure to flush the pancreas.
On Saturday 9th October Rob became unwell again with a stomach bug, so different antibiotics were prescribed to clear that up. One of the frequent scans revealed a narrowing of the tube into one of his kidneys and a stent was inserted to widen the tube; with hindsight he might have always had this narrowing. On Thursday 14th October Rob received a third procedure to flush the pancreas. The Consultant hoped this will be the last time: there was some dead tissue around the pancreas but they hoped it would detach without another operation.
On Thursday 21st October Rob was discharged from the Freeman with the understanding that he would go back to the ward twice a week initially and then to the Outpatients Clinic. By 25th October the Freeman were happy that we were managing at home but on 29th October the Consultant wanted to investigate why the fluid draining from the pancreas was still cloudy so another scan had to be planned. On 1st November Rob was admitted back into the Freeman for further investigations: he had developed C. difficile, which was causing added pain to the pancreatitis pain. Seven days of antibiotics cleared the infection up and he was back at home with a tube still draining fluid, which was removed a week afterwards. Finally his gall bladder was removed in February 2011.
Pancreatitis is something most of us have never heard of and in most cases the pancreas just goes back to normal quickly. The pain has been described as like having acid poured on your organs. If you are unlucky enough for your pancreas to necrotise then it triggers a chain reaction and for four to six weeks all they can really do is support your other organs to allow you to get to a point where they can start to remove the dead tissue from the pancreas. Rob was a fit and active man who had worked outside for most of his working life. He went into hospital on the 22nd August as a tubby healthy looking bloke and came out in November resembling a skeleton. People who are not as fit and healthy often don’t survive this long and horrible illness. Unlike a stroke pancreatitis affects both sides of the body and because of the severity of the illness and the length of time people are hospitalised patients often suffer from post-traumatic stress disorder. Rob was not actually in hospital that long: I have visited many people since (as part of my work with Pancreas North, see below) who have been in hospital for over six months and have spent months in ITU. A lot of people also have to have a colostomy bag which is reversed when they’ve recovered. There aren’t many conditions where you actually get a lot worse for a while before you see any signs of getting better. I would say that it took probably two years for him to fully recover from the experience of 3 months in hospital.
Rob life goes on now, his gall bladder was removed but he always has gut pain. He has no alcohol at all: the warning that you can have a drink but you might have another attack and die struck a chord! He’s back up to a normal weight and tries to eat a healthy diet and fortunately he isn’t diabetic, which is another awful side effect of the condition. He takes enzymes with every meal to digest the fat. Pancreatitis is a condition you just learn to live with and hope to avoid having another attack.
To try to support others affected by pancreatitis Rob and I got involved with a group called Pancreas North. We had asked the pancreatitis specialist nurse who treated Rob if there were any groups we could fundraise for and she suggested that group. Pancreas North is a support group in Newcastle upon Tyne, based at the Freeman hospital, and supporting pancreatitis sufferers in the North East and Cumbria. The group visits patients on the Freemans hospital ward and holds regular meetings at the hospital, but anyone regardless of whether they’ve been in the Freeman or not can come along. Many people have chronic pancreatitis and are being treated by GPs and they come to hear what the hospital specialists have to say. We have guest medical professional speakers: the last one specialised in pain management for people with chronic pancreatitis.
To find out more about Pancreas North visit their website on www.pancreasnorth.co.uk
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.