Chronic Pancreatitis-related Diabetes

Hi, i asked my DN this and she told me that once I am on insulin I will always be on it, but reading some posts any people manage what they take and how often so i guess it depends, this site is full of great advice and info so have a look round and i am sure someone with more knowledge than me will be able to answer you x

Hello,
I am in Australia and was diagnosed with chronic pancreatitis in 2009. I became diabetic in 2011. It is known as type 3c although you will most probably find the docs still referring to it as either type 1 or type 2. The endocrinologist will know it as type 3 c though. My pancreatitis results in many blockages in my bile and pancreatic ducts and to date, I have had well over 20 ERCPs to clear them. I have lost count. As the illness has progressed, as CP is a chronic progressive disease, my insulin requirements have also increased. I was initially on 7 units of Lantus once a day and by now I take 44 units Lantus at night and 8 to 12 units of Apidra fast acting insulin with each meal (three times a day). When I get the blockages it goes haywire and I need to increase the insulin. After they fix the blockages, I have days where out of the blue my blood glucose suddenly drops and very quickly and I have spent many evenings and nights munching my way through on sickly sweet muck far too frightened to fall asleep until I can get the sugars up and staying up. It can take up to five hours to get this to a level I feel safe with (8.0 mmol/L or thereabouts).

I do not take oral medication as they made me violently ill.

With this being a progressive illness, I expect you are likely to have to be on insulin for life now. Sorry to say that. It's awful I know.

I can only tell you my experience though. Perhaps others may have had better outcomes. This is a rare disease, the chronic pancreatitis so I have not come across many others with diabetes acting in this way either (none in fact). So hopefully yours will behave.

Kind Regards

Dawn

PS I noticed you are in India. I do know that tropical pancreatitis is more common and is again a different type of chronic pancreatitis to the type I have so it is possible it may behave differently. I would ask your pancreatitis specialist the usual behavior of diabetes for your type of pancreatitis.

Hi I also was diagnosed with Type3c Diabetes in April 2015 from accute pancreatitis (pancreas now necrotic (dead) ). Was also told it is the most difficult to control, I am on Novomox 30, 20 clicks morning and night. I am being put on Novomix 50 for the evening one as i keep waking up about 2 am with hypo's also have hypo's about 10 am but not all the time. Nothing stays the same with this it really doesn't have a standard. Also there is not much written about it
Regards John

oh my days finally there are people on here with the same as me, i am really struggling to get to grips with it as you say there isnt much info on it, my readings are always un controlled and as you say the hypos come out of no where, i got cp 12yrs ago and got diagnosed with diabetes in feb although my consultant says i hve been this way for a few years as damage has already been done, and it wasnt picked up, i have lost quite alot of weight and feel ill alot of the time but am trying to sort it out, the insulin i was origanlly on didnt work so am trying a new one hopefully this one will. i have scar tissue on the pancreas and have flare ups but make no insulin what so ever, have been told that the pancreas has had it altogether, it seems strange to type this but i am so pleased to be able to read and see other people with this

Me too! Mine is due to a necrotic pancreas, like @johnfridge. As well as the diabetes, I also have PEI and severe malabsorption so been on Creon for over 15 years. Sue xx

i was discharged from the hospital and taken off creon and everything else, the consultant i now see was disgusted and said that i have been very let down and this should have been picked up on a few years ago, i now have a problem with the left side of my heart and neuropathy in both legs and feet and back, amongst other mobility problems but am so gald that there are others with the same thing, when i found this last night it was a huge relief to see it lol

It's a relief (in it's own perverted way) to hear about others who have the same as me! I was diagnosed with CP in 2011 and diabetes confirmed last October. The hospital only found out I was diabetic for sure following the operation I had to get to sort out the narrowing of my bile and pancreatic duct and removal of gall bladder. It was either this or have to attend hospital every six months to get a new stent reinserted. I'm on 12units (am) and 11 (pm) Humulin M3 insulin and luckily don't have night hypos as I've worked out what I can eat/drink 10 minutes prior to going to bed - usually a couple of teaspoons of Mocha and 2 choc chip cookies (diabetic "Boots" brand I have to admit though). Readings can be around 4.3 - 5.0 prior to this snack. My pre-breakfast readings usually around 5.4 area next day. I too work a fairly busy job running around cleaning, and have managed to time myself when to go and have a check on glucose levels (usually around 3 to 3and-a-half hours after having eaten my main large breakfast. Sometimes I can fall into 3.5, but usually I get there before going under 4.0 at minimum, usually 4.6ish. I again usually have a Mocha (for sugar purposes) and yoghurt. I find Belvia biscuits are a god-send in that they release carbs slowly over 4 hours and keep glucose levels even and consistant. I do sympathise that expecting and waiting for hypos to happen is causing so much stress and sleeplessness - perhaps the Belvia and Mocha or Hot chocolate drink immediately before bed will help? I hope I don't give out a detrimental message here. Oh, yes, I'm also taking Creon (2 capsules before breakfast and 2 before tea). I wondered what dosage other's are taking and one big question I have is "how long are they effective after taking"?

Hi @Interaud , I use kellogs nut bars as my pre bednsnack and amazingly these ward of the night hypos! As for the Creon, I take up to 25 a day!! I was on the 40000 strength but they recently stopped manufacturing them so I've had to start on the 25000 and almost double the amount of pills. As an Creon veteran (over 15 years), I was always told to take 3 pills every meal, 2 for a light meal and 1 for a snack, but I have absolutely no exocrine function at all. I know from the dietician that the modern approach is different, that most patients are advised to take them if they are eating fats (so for example they don't have to take them with a plateful of salad), but I've never heard if anyone taking them like 'ordinary' meds twice a day. Sue xx

Well I will join the party, but I take a huge amount of lantus I'm up to 75 units at night, the good weather seemed to turn everything on its head between silly high and low. On Sunday I took a reading 4.4 as I was going to be driving I wanted it to be about 5ish so ate a digestive biscuit, next reading was 4.1, then 3.9. 3.5 it took nearly 2 hours to get it up to 4.9. On Monday 1st reading was 10.1, 13.5 then 6 it stayed there all day today, so hopefully settled back to its normal, as it is cooler weather.
It would be nice to try the lchf diet but panc cannot coke with high fat so muddle in between

Hey, thanks folks. It's interesting to note your experiences and in particular about the Creon dosage. I'm due my 6-monthly with doc at hospital soonish, so I'll be querying my actual dosage and affect it's actually making. Have any of you read Jan De Vries book "My Life as a Diabetic"? It's a really super educational insight into how he dealt with his diabetes through alternative means as opposed to insulin but I particularly found the different remedies he referred to and am now using a supplement "milky-drink" (although it doesn't look or taste like milk!) called Molkosan. This apparently does something in "aiding" pancreas to produce the enzymes that digest food, but reading the book yourselves would be my humble advice. I do suffer bloatedness and constipation and maybe its psychological, but I've noticed a bit of a difference since starting drinking this only a month ago. I'm also really keen to try something called IP6 but it's mighty expensive (we have a shop in Dumfries "Jan De Vries" or "Holland & Barrett). Just thought I'd sharemy perhaps useless info.