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.
Hi Gavin. I'm filled with admiration for all your achievements, you're bloomin marvellousI 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.
@GavinL can I ask, how do you find the pump in relation to controlling your 3C blood sugar levels? Has it made much difference? The biggest problem I have is the rapid highs and lows and night hypos so I've been dying to find a 3C. with a pump to ask them that question!!Thanks.
Thank you so much @GavinL, you have no idea how helpful you have been! I'm not in the 'right place' for a pump yet but its already been muted and I'm sure its where I'll end up. My 3C is still very brittle but slowly it getting more under control. I do have major mal-absorbtion and do wonder if that is the major contributing factor in the diabetes control. I cant LCHF because what I eat and what I appear to absorb appears to have little relationship despite taking copiuos amounts of Creon! And over the last year I've gone from very active to hardly active due to the 3c but I'm building back slowly. Thanks again Gavin, you have really encouraged me!!Happy New Year
For me the pump has been an amazing liberation in relation to exercise AND everyday life. I did have what I would call very good control prior to the pump (6% A1c) and using MDI and never thought I'd be offered a pump at all. However, due to being under diabetic Consultant care at my local hospital and them seeing me needing the 'control' to push my endeavours further it was recommended to me, I didn't even have to ask in the end. I was using a large single Lantus (basal) which would need reducing heavily the night before any planned exercise and I could never just do anything adhoc without eating whacking amounts of (unneeded) carbs to offset and so found that very restrictive.
With the pump, I could play with basal rates, effectively tuning on the fly, if I find myself running a little low, just back off the basal, sometimes down to as little as 30% with no boluses at all which can sometimes feel a little odd. The magic of exerciseHowever, the moment you stop, BGs do tend to sky-rocket, but knowing where the end of the ride is I personally need to resume a full 100% basal for a good period of time, and also pop in a good bolus to get things in check. But this is all very easy with the pump, whereas MDI just makes it a painful chore trying to achieve control with full/half units.
I would say the pump take a lot of work and commitment, importantly getting your everyday basal rates sorted, and even then, they change without warning if you're having a fallow couple of days, or you're feeling under the weather, but when things are ticking along nicely, the pump really does help keep a lid on everything.
Even now on the pump I do have the odd hypo/hyper, but for me that usually goes hand-in-hand with trying to deal with too much carbohydrate in my diet - a prime example has been Christmas and wanting to have a little normality and the odd mince pie with family. I'm generally a LCHF person and that really does work. Getting the 'acting time' of rapid acting insulin to match the digestion/absorption rate of carbs is the killer bit of science, especially with the compromised digestive system and needing Creon to digest it into useful fuel. Bloody minefield. I've certainly not had anywhere near the amount of nocturnal hypos I used to have when MDI though.
Thank you so much @GavinL, you have no idea how helpful you have been! I'm not in the 'right place' for a pump yet but its already been muted and I'm sure its where I'll end up. My 3C is still very brittle but slowly it getting more under control. I do have major mal-absorbtion and do wonder if that is the major contributing factor in the diabetes control. I cant LCHF because what I eat and what I appear to absorb appears to have little relationship despite taking copiuos amounts of Creon! And over the last year I've gone from very active to hardly active due to the 3c but I'm building back slowly. Thanks again Gavin, you have really encouraged me!!
Similar experience to you with the Creon. I'm taking about 20 x 25000 a day at the moment ( spaced out for each meal obviously!). I found the 40000 were much more effective and interestingly I was told the 10000 should only be used in children! I'm told by the gastro lot its a high amount but to carry on regardless as in 16 years I had very little of the 'nasties' that others experience!The mal-absorption is a problem - I have quizzed my 'team' at the hospital on numerous occasions about how much Creon I should be taking with each meal and snack. No one really ever gives a concrete answer to this despite the question being sent onwards to the Endocrinologists - I generally have 100,000 per meal (4 x 25,000), sometimes more if there is a particularly high fat content, swallowed periodically through the meal to help with the digestive combining. I used to have the 10,000 for snacks, but tend not to snack these days. My team say that if my weight is stable (I had lost 30% of my previous body mass) and things are ok (dare I say it) at the tail-endthen carry on with what I'm doing. No one seems too concerned about the levels of Creon I'm personally taking, which does seem odd.
I do hope things settle for you properly and you can then concentrate on moving to a pump, which I'm sure you will find quite liberating.
Similar experience to you with the Creon. I'm taking about 20 x 25000 a day at the moment ( spaced out for each meal obviously!). I found the 40000 were much more effective and interestingly I was told the 10000 should only be used in children! I'm told by the gastro lot its a high amount but to carry on regardless as in 16 years I had very little of the 'nasties' that others experience!
@GavinL do you take vitamins and/or supplements? I've had mixed results over the years and have now developed pernicious anaemia. Had problems with vit D for years!
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.
Much admiration to you. I had to part with my much loved job as a teacher/special needs coordinator in 2015 having had a similar event. I had necrosis of the pancreas following acute severe gallstone pancreatitis. I also have a large pancreatic pseudocyst which I've nicknamed Polly. Don't laugh....decided I can either hate it which I did for ages or learn to love and accept it in hopes it might eventually heal.
Well done on the cycling...I find walking a great way to distract myself from symptoms and helps to keep the old bones moving
Much admiration to you. I had to part with my much loved job as a teacher/special needs coordinator in 2015 having had a similar event. I had necrosis of the pancreas following acute severe gallstone pancreatitis. I also have a large pancreatic pseudocyst which I've nicknamed Polly. Don't laugh....decided I can either hate it which I did for ages or learn to love and accept it in hopes it might eventually heal.
Well done on the cycling...I find walking a great way to distract myself from symptoms and helps to keep the old bones moving
Hi Gavin. I'm filled with admiration for all your achievements, you're bloomin marvellousJan x
Welcome to the forum @GavinL. That is quite story! I had my own adventure in December 2005, after feeling ill for a month I collapsed after a shift and woke in the emergency admittance ward. I had a heart attack, my bp was 265/130, and my glucose levels were off the scale on the glucose meter. I must have been in shock because I wanted to go home to recuperate. The doctor told me, if I release you now, you will probably die in the next 24-36 hours! Very scary!!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.
We use cookies and similar technologies for the following purposes:
Do you accept cookies and these technologies?
We use cookies and similar technologies for the following purposes:
Do you accept cookies and these technologies?