This story is part of the Guts UK Pancreatitis Awareness Campaign.
Stuart Wood’s Story
I’ve had stomach issues (loose bowels) since my early 20s but these have always been put down to a ‘nervous tummy’ and over the years I’ve consumed copious amounts of over-the-counter medication to control this. In the late 1990s my ‘problem’ was becoming more of an issue with the odd accident. I’d had a number of episodes of what I thought was food poisoning with very intense and debilitating stomach pains and then, within a very short period of time, I lost almost a stone and a half in weight.
My GP arranged a blood test and an ultra-scan and quickly ruled out cancer. It was suggested that I might have a food allergy so an appointment was made for the local hospital. After a number of hospital visits and a number of months with false starts……gluten……lactose……IBS……they finally decided to do a proper scan and stool test. The outcome of this was a diagnosis of ‘a lazy pancreas’, put on Creon and referred to the dietitian. I regret to say that she was worse than useless: if I’d carried on with her advice I would have spent most of my time looking for spices to add taste to my meals.
Over the next five years or so I had to take increasing amounts of Creon with my food, even though I was on a low-fat diet. I started to suffer from increasing periods of intense pain in my back and upper abdomen, but by the time I’d managed to get an appointment with my GP about it and he arranged a blood test, the pain had invariably subsided and the result, according to the GP’s reception, ‘’it isn’t pancreas pain, everything is OK’’. Frustrated by this lack of response from my GP I had started to look online and became more and more convinced that with my symptoms, it was in the area of my pancreas that was causing me so much pain. In 2005 on another visit to my GP because of really bad pain, especially in my back, he told me in no uncertain terms that “You don’t get back pain from the pancreas. I’ll make you an appointment with the physio”. I went home in tears.
On discussing the GP’s diagnosis with my wife, we returned to the surgery and asked to see the GP there and then (we made a fuss). Through my internet searches, I had become aware of a specialist centre for the pancreas at The Royal Liverpool Hospital and the name of a specialist. I forcefully requested from my GP that I have an appointment with the specialist, to which he agreed. After seeing the specialist at The Royal Liverpool Hospital, a number of scans were carried out and I received a diagnosis of advanced idiopathic chronic pancreatitis and a recommendation for an early operation to remove a large calcified area at the head of the pancreas.
In 2006 I underwent a Beger’s operation to remove the head of the pancreas and a portion on the centre. The operation was successfully carried out but whilst recovering on the ward I contracted C. difficile and unfortunately it was this that ultimately slowed down my recovery by many months. I have suffered from episodes of pain since the operation for which I do take medication but I have no doubt that it was worthwhile in that it has helped to slow down the progression of the disease.
In 2005 I joined an online support forum for people with pancreatitis and for a number of years now I have been administering the forum, with the help of 3 other patients. It was through this involvement that I became aware that I was not alone in having had issues around getting a diagnosis of pancreatitis and the treatment of it. Most people were having issues in one way or another. Whilst keeping my ear to the ground for new treatments I became aware of an opportunity to become involved in the development of new pancreatitis guidelines, which were being coordinated by NICE (The National Institute for Health and Care Excellence). I contributed towards the development of the scope for the NICE Guidelines for Pancreatitis and subsequently successfully applied to become a lay member of the guidelines committee.
The NICE committee meetings took place in London about once a month, which involved catching a 6.20am train from Cumbria. Standing on a cold and windy Oxenholme station at that time in the middle of winter was not particularly pleasant but I did feel that it was for a worthwhile cause.
There were three lay members on the committee, each with a different pancreas experience and we quickly became good friends. Amy’s experience was particularly bad with a long hospitalisation for acute pancreatitis. Louise has hereditary pancreatitis which has a very high risk for turning into pancreatic cancer. The other committee members were a group of very knowledgeable surgeons and clinicians directly involved in the research and treatment of pancreatitis. As lay members, we were very quickly made at ease and it was made clear to us that our opinions and experiences were very valid and our input to the proceedings was welcomed.
For me, the development was not quite what I had expected. I thought that we would come up with diagnosis and treatment recommendations from the skills and experience of the members themselves, whereas what we did was to look for the best scientific and surgical research evidence and practices throughout the world with which to determine guidelines. Where no evidence is available we made recommendations for research projects. At times, I did become a little despondent about the process due to lack of evidence in some areas but I do feel that the new pancreatitis guidelines are a big and valuable step forward in the diagnosis and treatment of pancreas disease.
I must admit that I’m not a public speaker but I’m not afraid to stand up and ask awkward questions. I continue to be involved in highlighting pancreas diseases, including pancreatic cancer. I have a particular interest in raising awareness of the issues of poor ‘continuity of care’ between Primary, Secondary and Tertiary healthcare systems, lack of dietitians with pancreatitis knowledge, availability of pain specialists and physiological support, issues that effects many pancreas patients.
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 ideas here!
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