This story is part of the Guts UK Pancreatitis Awareness Campaign.
Debbie Shaw’s Story
My pancreas journey is one of frustration and perseverance and illustrates just how difficult it is for many pancreatitis patients to receive a timely diagnosis. My journey began in February 2010 when just six weeks after an emergency appendix rupture and removal I began to experience pain in my upper abdomen. The previous year I had two episodes of very painful upper abdominal pain. One episode requiring me to attend an out of hours doctor but I didn’t follow this up as both resolved within a few hours. An ultrasound scan revealed I had multiple gallstones and surgery was set for July 2010. In the four months I waited for surgery my pain became quite bad but I assumed this was normal with gallstones. Just two hours after my surgery I started to experience the same familiar upper abdominal pain. I jokingly asked my surgeon if he had really removed my gallbladder! He looked worried and did some blood tests. This revealed I had high amylase levels (a digestive enzyme secreted by the pancreas), which he explained suggested inflammation of the pancreas. My liver blood levels were also very high. I was beginning to think this was some kind of bad Carry On film, with three organs affected in just seven months, two of which had been removed! I was eventually discharged with an MRCP (a special kind of MRI scan) to follow. The MRCP revealed a dilated pancreatic duct (when the duct is wider than normal) but nothing else of concern. However the pain soon became constant and required strong painkillers and so the surgeon referred me to the Royal Surrey Hospital to see a pancreas specialist for further investigation.
Two months after the surgery I had my first EUS, which is a special kind of endoscopy to look closely at the pancreas. This revealed a lot of healed stomach ulcers, as well as show that the pancreatic duct was still dilated. The examination also showed that another duct, which links the pancreas and the liver, was also wider that it should be. They also found a lot of inflamed lymph nodes surrounding the duct. A CT scan (another type of examination) had showed that my pancreas looked ‘bulky’. My blood tests continued to show a problem with the pancreas and a further EUS was scheduled to keep a close eye on it. I was later told they suspected I had pancreatic cancer so despite the on-going pain and frustration I was very grateful this wasn’t the case. I began to find eating very difficult as anything I ate caused more pain. I also began to lose weight and my diet was lacking in nutrients, as I was living off porridge and yoghurt for many months.
The next step was an ERCP. This involves a tube being inserted down the throat which takes X-rays of the pancreas and ducts. It can also involve instruments being inserted into the duct to remove any debris or stones that might have remained. Some sludge was cleared out of my duct but nothing remarkable was found. I was warned before the ERCP that there was a risk of developing acute pancreatitis from the procedure. How ironic that a procedure to help treat issues with the pancreas could cause pancreatitis! Unfortunately just three hours after I arrived home I began to experience severe pain and vomiting and was diagnosed with my first attack of acute pancreatitis, resulting in 10 days admission to hospital and a collapsed lung from the leaking pancreas fluid.
Unfortunately the ERCP didn’t help my symptoms and the doctors decided to refer me to UCHL, a specialist pancreas centre in London. They decided to repeat the ERCP and this time decided to test the pressure in my ducts. The test revealed that the pressure in the ducts was very high and they decided to cut the sphincter, which is a valve at the entrance of the pancreatic duct that opens and closes to allow bile through. They hoped this would relieve the high pressure and hopefully relieve the pain. The Consultant said that the high level of pressure in the duct indicated it was likely I had a condition called Sphincter of Oddi Dysfunction (SOD). Unfortunately, once again, this procedure didn’t help the constant pain and so the consultant at UCHL referred me for a pain block (a treatment using drugs to block pain signals from the nerves linking the pancreas to the brain). During this block they discovered the first signs of early damage to my pancreas. As I had discovered, it can take many years for damage to show on scans despite on-going severe pain. Despite this I was discharged from UCHL and advised that I didn’t have chronic pancreatitis but that I had hyperamylasia instead (i.e. that I was born with naturally high amylase levels). I found this explanation unsatisfactory: after all if the high amylase levels were not relevant, were the constant pain and duct dilation just a weird coincidence?
After some research I decided to pay privately to see a specialist at King’s College London. Another MRCP was done and the Consultant said that there was a lot of atrophy showing, which is basically shrinkage of the pancreas. He also pointed out that there was a fair amount of damage to the pancreas and noted that the duct remained dilated. He suggested that a stent could help as this would hold the duct open and allow the bile to flow better. I was told, as I had suspected for five years at this point, that I had chronic pancreatitis. I can’t explain how relieved I felt that finally some damage to the pancreas had been identified and a plan was in place to try and help. As you can imagine, by this time I was very worried about losing my job after a lot of time off work for procedures and because flare ups of severe pain meant I was frequently unfit for work. I wasn’t sleeping well; I’d fall asleep out of exhaustion but wake up soon after due to the severity of the pain. At times I felt totally frustrated and desperate for someone to help me.
Once again unfortunately the ERCP to insert the stent caused an episode of acute pancreatitis but once this resolved I was finally experiencing some benefit from the stent. I had six stents in total over an 18 month period (10 ERCPs in total) and a further 2 acute pancreatitis attacks caused by the ERCP. Whilst I got a lot of relief from the stents by the time the acute inflammation had settled, I was only getting around six to eight weeks relief before the stent began to cause problems. My Consultant advised that my only option at this point was long term stenting. As each ERCP to insert the stents carried such a high risk of acute pancreatitis (my personal risk was at 40%), which was causing further long term damage to my pancreas not to mention severe pain, I was not satisfied that this was my only option and so began once again to research other options.
I knew from support groups that I had joined online that some patients had undergone a Whipple operation to help their duct and pancreas problems. I started to investigate this surgery and was convinced that this could be the answer to my problems. I asked my GP to refer me to the Royal London hospital and the surgeon ordered some tests to assess my suitability for pancreatic surgery. The surgeon explained that the fact that stents had helped the pain meant that I was a good candidate for a Whipple operation. A Whipple operation is a major pancreatic surgery that involves removing the head of the pancreas and some re-plumbing of the ducts (and lots of other technical things!). This meant the sphincter that caused some of my problems would be removed, as well as part of the problematic duct. I had this surgery in February 2017, seven years after my journey began. Unfortunately I developed multiple complications from the surgery including delayed gastric emptying, multiple leaks at the incisions where the pancreas had been joined, two infections, and required a blood transfusion. The recovery was long and difficult, much harder than I had anticipated. The post-operative pain was extremely difficult to manage as I had been on strong opioids for seven years at the point of surgery and had become tolerant to them, which meant I had to keep increasing the dosage and change the type of pain relief over the years. The hospital’s Pain Team struggled to find options to help the pain and I was eventually treated with ketamine amongst other strong drugs. Those 2 weeks in high dependency were the hardest of my life. I felt frustrated that over the years I’d been prescribed stronger and stronger pain relief instead of answers as I struggled to find a diagnosis. I vowed that once recovered I would come off the strongest of my medication, a fentanyl patch that I’d relied on for years. The Pain Team explained that I had been on it so long it probably did very little for the pain anyway, as my body had become so used to it.
Four months after the surgery I managed to return to work. Over the course of those seven years searching for answers I had a lot of time off work and was forced to reduce my hours to cope and keep hold of my job. I also have two young children so managing work and family life living in severe pain was extremely difficult. An invisible illness is difficult for other people to understand. I smiled and mainly managed to hide the pain but inside I was struggling to manage the severity of the pain, lack of treatment options, and the sheer frustration of struggling to get a diagnosis and treatment plan. At times it felt like there was no end in sight of this long and difficult road but my family, friend and support groups kept my spirits up. The outcome of my surgery has been better than I ever imagined. There was no guarantee that I’d see any benefit from the surgery but now that the main issue causing the pain was resolved (the part of the duct that was damaged was removed) it means the bile flows better and my pancreas isn’t constantly inflamed anymore. When I was opened up the surgeon said my pancreas was extremely inflamed and likely had been for seven years, explaining why my pain had been so severe. I was able to slowly wean myself off the fentanyl patch over a nine month period. I still live in constant pain that requires daily pain relief but it’s much more manageable now.
Although I’ve very grateful for the relief I now have, I’m also quite bitter that it took so long to get a diagnosis and that I had to research and find my own treatment and surgical options. I wasn’t born with high amylase levels: I had a constantly inflamed pancreas which was ultimately caused by scarring in my pancreatic duct. The signs were all there. The on-going pain I have now was caused by the delay in getting a diagnosis, as the constant inflammation resulted in permanent damage to the pancreas. I know I did all I could to get answers as I knew the problem was my pancreas and I wasn’t going to stop looking for help until I had an answer. I’m just frustrated it took seven years and irreparable damage to find that answer. I frequently share my story in support groups to try and help other patients. Sadly my struggle to get a diagnosis isn’t unique.
What can you do?
Fancy fundraising for Guts UK? Have a coffee morning or dinner party with our pancreatitis quiz for the Kranky Panky Weekend. Or maybe you take our quiz and ‘Pin the Pancreas on the Person’ game into work with a collection tin? Your donations will make our research into pancreatitis happen. Thank you.