My first introduction to Pancreatitis was after getting out of my car, in the carpark at home, and instead of walking back to the flat. I collapsed on the floor in screaming agony.
This was my first emergency admission into the Accident ward of a hospital with severe stomach pains, I thought at this time that I had burst my appendix!
However, typically enough by the time I got to the hospital and was seen, the attack had worn off and nothing could be found. How many have been in this scenario?
These attacks continued at more frequent intervals and I was admitted to the General Hospital in Birmingham, where I was given various tests. These included - barium anenemas, cameras up the backside, ercp’s cameras down the throat, abdomen x-rays, CT scans MRI scans etc the conclusion at the end was that I was a hypochondriac, or at least that was the way I was meant to feel!
All during this time I was on morphine both in tablet form 40mgs per day as swell as being given three litre bottles of liquid morphine – something that would never happen today and I was losing a lot of my life to it until I decided to try and wean myself off it in the most stupid way by going cold turkey. This led to extremely violent blood-filled day-mares, like nightmare but you are fully awake and hallucinate seeing people being shot up with blood splatter everywhere.
My decision to do this was not totally stupid but due to meeting Geoff Brown who similarly had Pancreatitis and when I met him the first time, he was slumped in a chair unable to more in agony and yet a week later when I met him he was moving about freely in his garden tending his roses! When I questioned him about his miracle recovery, he told me about the first pain relief machines we fundraised for the x-Pain machine. I had bought one of these and before seeing if it was effective needed to be off the morphine first, or at least that was my stupid idea.
I eventually changed hospitals to the East Birmingham Hospital, due to this being closer where my Wife worked, so that she could pop in in her lunch break, whenever I was admitted. Also I was looking for another hospital locally due to a bad experience with the then, General Hospital, when they overdosed me with insulin. As I was diabetic before I started with the Pancreatitis three years later.
As I have always been interested in trialling new drugs and treatments, being a guinea pig for the same, as it gave me access to the latest drugs and treatments available for my diabetes. So when an opportunity came up to trial the new Humalog insulins, I started on the programme testing the new insulin Humulin. (These are genetically modified insulins grown from yeast cells, that mimic perfectly normal human insulins rather than those produced from pork cell or beef cells.
While attending one of these sessions to follow up on my experiences (because I was finding the purity too close and I lost all my warning signs for hypoglycaemic attacks) that I had a further Pancreatic attack in front of the Diabetic Sister there and she got me referred to my then Pancreatic Consultant.
This gave me validity in claiming an attack and the pain as it was witnessed by someone in the medical profession – see drug trials can have a useful side effect.
After a week’s admission and various tests, including the ECRP, which is a camera down the throat, I had two of these and a biopsy taken which the result of which was that I had pancreatitis. Little did I know then of the dangers and the death rate from investigating an inflamed Pancreas when I had these. After each of these I had a pancreatic flare ups.
My diagnosis was given as chronic pancreatitis with reoccurring attacks of acute pancreatitis which is when we get the severe pain and incapacity of an attack.
The message to anyone unhappy with their treatment is that you do have the right to a second opinion and to change hospitals if you wish. My G.P. was a great help in this matter.
My final severe attack of acute flareup was in 2009 and my attack took a long time to get over. Just a reminder of what happened. I was admitted to a Birmingham Hospital (which I cannot reveal as it is being sued by myself) in July 2009, seems like only yesterday.
I was in terrible agony, as you are when an attack starts, and was admitted via ambulance. A number of admissions followed, each getting worse than the one before, and there were MANY times I was left screaming in agony as they would not believe I had Pancreatitis!
The reason – my amylase levels were not raised! This goes to show how unreliable the blood test for this is as when your pancreas is damaged to such an extent it does not produce amylase anymore!
To cut a very long and boring story short I had 5 admissions in total, the last one at Derby City Hospital under our Patron, Prof Mike Larvin where I was diagnosed as recovering from an Acute flare-up of Pancreatitis! In one sense I felt vindicated in what I was saying at Birmingham where I was told I did not have Pancreatitis despite what it said in my notes.
I was also erroneously informed that I was being referred to the oncology team for investigation into cancer.
You can imagine the state I was in through that diagnosis.
I now have a claim going through with the Hospital accusing them of medical negligence in not controlling my pain. Already they have highlighted the letter from Mike Larvin saying I do not have raised amylase levels during an attack and hopefully this action will wake them up to the fact that we are not all alcoholics, and all do not have raised amylase levels, nor are we all drug addicts!
Depending on the outcome I will highlight the Company who took this on for me, if successful and if you have the energy, you can pursue them for safer treatment of yourself and others who follow you. I will point out there is no money in this to speak of rather it is the highlighting of my treatment to make them think more next time when presented on admission.
I was eventually persuaded by Prof Mike Lavin to have my gall bladder removed in **** when I came round, I was informed that unlike my first diagnosis of pancreatitis being caused by mumps when I was five that it was more likely due to =my gallbladder being full of quote ‘dirty, infected stones’.
I had one further flareup approximately a year later when one of the stones must have been lodged in the bile duct finally slipped through and touch wood nothing to this level of pain since.
My pancreas was scanned during this time and between the 6 month scans my pancreas had shrunk by 30% starting its inevitable journey of shrinking to the size of a walnut but leaving enough insulin producing cells not to be diabetic – but not so in my case as I was diabetic before the pancreatitis started but it has not grabbed any of the nerve bundles in the chest for me to be in constant pain to that level just an awareness of constant low backpain in the area of the kidneys.