I have been lurking around the T1 forum for so long, reading so much information which is obviously very applicable to us all as T3c, with the notable exception of there ever really being a 'cure', and the need (for some) to take Creon supplements with everything we eat.
I parted company with my 41 year old pancreas (& gallbladder) in October 2013, which did feel like grief/loss at the time, but needed to happen. I had collapsed suddenly on 31st July 2013 in the waiting area of my Doctors surgery after a week of what felt like chronic indigestion. On that morning I had clocked myself in the bathroom mirror and thought 'Gosh, I do look rather yellow' and then peeing what looked like coca-cola - think I need to see the Doctor... Next thing I remember was waking in ICU, fully ventilated via tracheotomy and very very poorly. Double lungs drains and kidney dialysis. I nearly died on a number of occasions (heart was started a couple of times) due to the severity of my Acute Infected Necrotising Pancreatitis. Turns out some rather small gallstones had moved into my biliary duct causing my pancreas to effectively blow-up in my abdomen - something so innocuous wreaked so much havoc. I also have a Portal Vein Thrombosis as a result of this.
It took me a long time to recover from my surgery, eventually leaving hospital December 2013 and then getting to grips with the management of diabetes. I read everything I could, I needed to get a grip of what had happened to me and then to ensure that I could carry on living a long and fruitful life for the sake of my young family. I started out on MDI basal/bolus regime. Did the DAFNE. Attended all my clinic appointments religiously, taking reams and reams of data with me about food/BG's. I think I drove my diabetic & dietetic team bonkers!
I now pump NovoRapid with a Medtronic 640G and occasionally wear an Enlite CGM Sensor (££££), but more often than not wear a Freestyle Libre Sensor (££). I take Creon.
I also had to get back to my love of road cycling - which prior to being a T3c diabetic was simple. Jump on the bike with a few spares, couple of gels. Job done. Now I haul so much gear with me fellow cyclists laugh until you tell them what and why. With OCD levels of BG testing in the beginning to get my 'system' working I nailed it - found a basal that worked dependant on duration/effort/distance (no boluses at all when riding, even at the cake stops!).
With all that hard work and dedication I managed to cycle 330 miles from my home to Lands End in May 2015 over 4 days and raise money for Diabetes UK. I also achieved a six hour 112 mile Ironman TT late summer 2015, all of which would be a feat for most without health complications. It can be done
Sorry for the waffle - this is the first time I've felt compelled to write this somewhere.
PS - Also happy to talk at length about my road to cycling nirvana if anyone is struggling themselves with endurance exercise and diabetes control.
Acute Infected Necrotising Pancreatitis and Beyond...
- Thread starter GavinL
- Start Date
- Messages
- 9
- Type of diabetes
- Type 3c
- Treatment type
- Insulin
It's never easy Iain. I know your struggle. All I can say is that for me with hard work and dedication I managed to get somewhere near 'normal' - well as normal as it could ever be.
- Messages
- 9
- Type of diabetes
- Type 3c
- Treatment type
- Insulin
Yes, I had the external drain until I could have the surgery, so was only worn holster-like on my leg for a few months. There was a tiny element of pseudocyst remaining (apparently) after my op, the Consultant Surgeon at Frimley Park (Mr David Rae - the man who saved me) used some elements of my own internal bodily structures to create a 'port' from the remaining pseudocyst to drain directly into my stomach too, effectively removing the last remnants into my own digestive system, where it would have been ultimately. As I understand it, this would have 'healed' over after about 18 months. I presume that this is now the case...
