My story is a little different from most people with Type 1 diabetes. However I would be very interested to find anyone else who has had a similar experience.
In 1988, at the age of 40, I began to experience hypo symptoms. Initially I was able to control them with jellybeans followed by a carb snack. However over time the symptoms became more pronounced. I was referred to an endocrinologist who ran a glucose tolerance test which showed low BGL’s. I also had a CT scan which was clear.
By 1999 I was very sick, having hypos most mornings and feeling generally unwell. I collapsed one morning in my GP’s surgery and was immediately sent back to the endocrinologist who scheduled another CT scan. This time it showed an insulinoma at the head of the pancreas. This is a tiny tumour which causes the pancreas to produce excess amounts of insulin whenever carbs or sugar is consumed. It is generally benign and very slow growing. Insulinomas are rare affecting 1 in 100,000 people and I had no family history to explain this condition.
I had the insulinoma successfully removed and assumed that all would be well from then on. However within a few months I was again experiencing mild hypo symptoms. My endocrinologist continued to monitor me with regular blood tests to check my glucose and insulin levels. My BGL’s were generally lower than average (around 3.5) but most of the time I felt fine. We agreed to leave further investigations for now even though it was possible that I could have another insulinoma. Only 10% of people who have had one are likely to develop a second one.
By 2010 I was regularly having hypo symptoms and the endocrinologist and I agreed it was time to find out what was going on. I had a series of tests which indicated the presence of not one, but two insulinomas at either end of the pancreas. It was a one in a million chance and the thought of another big operation to remove them did not thrill me. Little did I know what I would be facing.
When I saw the surgeon he told me that I should have my pancreas removed completely. He had discussed my case with the surgical team at the hospital and they also agreed. He said that even if I didn’t have all the pancreas removed I would still need a large part of it removed due to the insulinomas being at opposite ends. There was also scar tissue from the first operation which was close to one of the insulinomas. His other concern was the likelihood of me developing more insulinomas and the chance that the next one could be cancerous. If that happened further surgery would be very difficult and the cancer could spread quickly to other organs.
As well as the pancreas being removed I would also have to have the gall bladder removed together with part of the bile duct and bowel. As a result I would then be dependent on insulin injections and capsules of digestive enzymes before every meal and snack so that I could absorb any fats in the food I ate. Needless to say I was in shock for a while but soon realised that I had little alternative but to have the surgery.
Over the next two months I researched everything I could find about the operation and Type 1 diabetes. I saw a diabetes educator, a dietician and my endocrinologist to find out what impact this was going to have on my life. I guess I was luckier than typical patients with Type 1 diabetes in that I had this time to prepare myself rather than being very ill and rushed into hospital with sky high BGL’s.
So in Feb 2011 at the age of 62 I had surgically induced Type 1 diabetes. It was a major operation and I spent two weeks in hospital and many months recuperating. A few months after the surgery I developed problems with scar tissue adhesions which caused severe bouts of abdominal pain. I had to go back into hospital for minor surgery to correct this and since then have been reasonably well. However my body lets me know if I have overdone things. I also lost 10 kgs and have only been able to put on 1 – 2 kgs due to the low fat diet I now need to eat.
Fortunately I have been lucky enough to have very little trouble managing my diabetes. I only need 2 units of background insulin (Lantus) morning and night, and average between 5 and 8 units of quick acting insulin per meal. I take Novorapid with a demi pen so that I can have half doses when necessary as I seem to be quite sensitive to small changes in insulin.
Twenty two years of living with low BGL’s have provided good training for the need to eat regular meals, monitor my sugar and carb intake, and be alert to hypo symptoms. However the best thing that happened was being able to do the DAFNE course (Dosage Adjustment for Normal Eating) six months after my surgery. This 5 days of intensive training run by Diabetes Australia (Vic) taught me that I could eat what I liked as long as I matched my insulin to the carbohydrate (1 unit of insulin for every 10 grams of carb). Doing this course very early in my new life with Type1diabetes has got me into the habit of regularly checking my BGL’s before eating, reading food labels to assess the carb content and looking for patterns between what I have eaten, my BGL’s and insulin doses.
I have also been blessed with a fantastic support team who keep in touch with each other about my progress. These include my endocrinologist, the diabetes educator from the DAFNE Course, a local dietician who has taken a special interest in my case and my GP who keeps a close eye on my overall health and well being. My family, friends and work colleagues are very understanding too. Life with Type 1 diabetes is not always easy but I try and make it work for me. Since my surgery I have managed to travel to Europe for a three week holiday, continue my casual job at a local Visitor Information Centre and maintain my love of theatre, cricket and football.