This story is part of the Guts UK Pancreatitis Awareness Campaign.
My name is Elaine Graham and I am 59 years old and live in the north of England.
In May 2001, aged 41 with a young family, I got what I thought was very bad heartburn, it was so bad my husband took me to the emergency GP service. He diagnosed me with a virus and gave me some painkillers.
Two weeks later I had the same pain whilst away for the weekend, my husband rushed me to A&E as I thought I was having a heart attack. Diagnosis, heartburn, advice, Rennies! I knew this wasn’t heartburn and made an appointment to see my GP. I never got there, as a week later it started again and when I started to projectile vomit an ambulance was called.
After various tests, acute pancreatitis was diagnosed, caused by gallstones. I didn’t know I had gallstones. This was 26th June. I left hospital on the 8th August after having my gallbladder (three quite large stones in my bile duct) removed in an emergency operation – no keyhole surgery for me!
I also had pseudocysts and had to have drains fitted. I have never felt so ill in my life. I lost three stone in that time. I couldn’t eat anything, I was in terrible pain and felt so nauseous I couldn’t even bear anyone talking about food or even looking at it.
To cut a long story short, I recovered slowly, started to eat again and eventually returned to work. The only advice given was don’t drink alcohol for six months. I plodded on in life, watched my diet and I realised that fatty food had an adverse effect on me!
In June 2007 whilst on holiday in Spain I felt the familiar pains, I suffered for two days until we flew home. I made an appointment with the GP who told me I couldn’t get pancreatitis again as I had had my gallbladder removed! I told her I begged to differ as the pancreas was a different organ and once you have pancreatic pain you NEVER EVER forget it. After much deliberation she conferred with a colleague and I was referred for a scan.
The CT scan picked up an enlarged spleen and they were concerned enough to give me an MRI and endoscopy at my local hospital. These weren’t really good enough to see everything so I was sent to a different hospital, a 120 mile round trip. Here I was given an ultrasound endoscopy where they found an apple-sized tumour/cyst on my pancreas. I was quite resigned at this stage as of course I had been in touch with Dr Google and realised my symptoms were consistent with the findings. The best course of action was removal of the tail and body of the pancreas (distal pancreatectomy) and splenectomy “just in case” of malignancy.
Unfortunately the operation was scheduled for 19th December 2007, I would be in hospital for Christmas and possibly New Year. The operation went ahead and after a couple of days in ICU I was put into a single room away from infection. It was a lonely and depressing time, my family were miles away and I was so ill. As it was the holiday, the results wouldn’t be known for three weeks! To be fair I was so unwell I didn’t care. Unfortunately I suffered a pancreatic leak on New Years Eve, the pain was incredible. I was on all sorts of machinery which beeped and buzzed all the time. The results came back in the New Year and it turned out to be a pre-cancerous tumour, no chemo needed, what a relief!
Finally on 8th January I was released! I recovered slowly at home, I had nurses visiting to change dressings etc. Eventually I felt stronger and stronger and got back to work on a phased return in April. I was told to check my blood sugars, I was told I could have woken up from the op full type 1 diabetic but fortunately I didn’t. Again I plodded on with my life, enjoying it to the full. I became a grandmother and got promoted at work, life was pretty good and I counted myself very lucky that it wasn’t cancer.
I had another acute pancreatitis attack in July 2010 and was hospitalised for three days but recovered quickly. In October of that year I was diagnosed with diabetes. I was disappointed but not surprised, at first they told me I was Type 2, I didn’t argue, I didn’t know any better. After a couple of years even after diet, exercise and Metformin my blood glucose levels were just going up. I had started to research and educate myself about diabetes and I realised it didn’t matter how much weight I lost or how much exercise I did, my pancreas (or what was left of it) was irreversibly damaged.
I’m afraid my GP practice didn’t know much about pancreatitis or the operation I had had and just put me in the type 2 pigeon hole as I was over 50 and a bit overweight (10lbs or so) and was told I would probably have become diabetic anyways! I disputed this and eventually was put on insulin, mixed, after more research I found out about Type 3c Diabetes, I pushed and pushed and was put on MDI (multiple daily injections) I then asked to attend an educational course to learn how to manage my condition. I was told I couldn’t because I wasn’t a “ proper” type 1 diabetic! Eventually, I think they got sick of me and I attended the diabetic clinic (at this point it was January 2018 and I had never been seen by an endocrinologist or even been to the diabetes clinic at the hospital). Here I met a wonderful nurse who knew all about my type of diabetes and said of course I must attend an educational course as I was to be treat the same as a type 1 diabetic to get the services I require. I could have cried I was so happy. I don’t know anyone else like me so it can be a lonely place.
As well as the diabetes I also have Gastric Dumping Syndrome, not very glamorous, and swallow shed loads of Creon every meal, another side effect of a damaged pancreas.
Luckily I am a strong and stubborn woman and have an amazing family around me. The whole point of this VERY long story is, pancreatitis doesn’t have to be the end of the world, you can survive it and it’s consequences. I live everyday as if it’s my last, I am 60 next year and I once felt I wouldn’t see 50. I’ve just returned from travelling around the continent for five weeks, most of my luggage was medication, I take up to 30 tablets a day as well as five shots of insulin but I will not let pancreatitis and what it’s left me with, define me.
As well as the general public knowing the symptoms of pancreatitis, I really think GPs need to be educated too.