Creon and diabetes - what to do

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alandavies

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in October 2023 I had a recurrence of kidney cancer in my pancreas - I had surgery (successful) to remove it but I am now type 1 diabetes.

For the last 6 months I’ve been running high and low in terms of blood sugar and with my diabetic nurse trying different splits and doses of rapid acting and background insulin - with various degrees of success.

I was prescribed Creon when I was discharged from hospital and after 12 months I have stopped using it with no side effects in terms of bowels etc.

My question is , is there a relationship between Creon and my challenges of getting my diabetes under control? I’d rather live without Creon if I can

What do you think?

First time question so hope I’ve added enough detail….
 
Been using Creon for last 6 years & never noticed it effecting bg control, if your dose isn't correct it can effect how your food is digested so that could cause issues with bg control.

Will tag @eggyg who has also had pancreas removed & might be able to offer up some advice.
 
Hi and welcome.

It sounds like you are actually Type 3c (damage to pancreas through disease trauma or surgery) rather than Type 1 (autoimmune attack on the insulin producing beta cells in the pancreas) That might seem a bit pedantic as you should receive treatment as if Type 1, but there are subtle differences with Type 3c which can make it a bit trickier and more "brittle" ie highs and lows can be harder to balance.

Is the nurse who has been helping you a diabetes trained nurse at your GP surgery or a fully qualified Diabetes Specialist Nurse (DSN) who is based at a hospital clinic? That can make all the difference to getting the support you need as a nurse at the GP surgery simply does not have the depth of knowledge to handle complex cases like yours.

Do you have Freestyle Libre sensors or other CGM (Constant Glucose Monitor) opr are you trying to manage with finger prick testing?

Which insulins are you using?

Creon is a digestive enzyme supplement which helps your body to digest food if your pancreas is unable to produce enough. It allows you to get the nutrients from the food you eat, so if you need it and you don't use it, then you will lose weight as well as likely have issues with bowel movement. If you do need it and you don't take it then the food you eat can't be digested, so any carbs that you inject insulin for will not be able to release glucose into the blood stream so you risk having hypos. It may be that your pancreas can still produce some but not enough, so this may be causing swings, but to be honest diabetes is challenging to manage with insulin and no 2 days are the same.
Getting your basal dose(s) right is the main key to better stability, but you have to understand that your basal needs can and do change in response to a number of different factors. Exercise and alcohol being two of the main ones.
For instance I use Levemir as my basal insulin. 22 units in the morning as soon as I wake up usually keeps me reasonably stable during the day most of the time but occasionally I only need 20 but I need anywhere from 0-5 units on a night and that will depend on how much exercise I have done over the past few days. Earlier this week I was needing 3 units at night and sometimes waking up high, but yesterday I did quite a lot of exercise so I didn't take any Levemir last night. I went to bed in the 6s, my levels gently dropped down into the 4s whilst I slept and then rose slightly to 5 when I woke. If I had injected the 3 units the same as the previous night, I would have hypoed quite badly during the night. My levels have run low most of the day today too. Exercise can affect you for up to 48 hours afterwards. Some people find they hypo when they are doing exercise, I tend to hypo when I sleep afterwards. You have to figure out how your body responds and learn to adjust your insulin accordingly. Some people manage to keep their basal the same after exercise but reduce their meal boluses. That doesn't work for me as it is when I sleep that I hypo following exercise.

If you have a CGM and can post a graph of a day when you were having issues, we might be able to make some suggestions. Sometimes it is just a question of timing, particularly if you are getting big meal spikes and you need to inject your insulin a bit further ahead of eating so that the insulin and the glucose hit the blood stream at about the same time. It is all about careful experimtation to see what works for you, so if you currently inject 10 mins before eating and you spike really high, then try injecting 15mins before eating for a few days and if still spiking try 20mins.... and so on until you find the timing that works for you and your insulin. I used to need 45 mins prebolus time at breakfast, but just recently it has reduced a bit. Other meals I just need 15-20 mins, so different times of the day need different timings.

Anyway, I have probably now flooded you with too much info, but if you can show us a graph which demonstrates the problems you are having (if you have CGM) or give us examples of readings if you don't have CGM..... but you really should have it and you may need to be politely pushy to get it, if you don't.
 
Welcome @alandavies
If I don't take enough Creon then I might see less of a rise in blood glucose after eating or go low if I used the usual amount of insulin to cover the meal. I''ve not tried going without Creon as I have very little pancreas left and having too little certainly gives me symptoms.
I've always had the idea that a damaged pancreas can be erratic in terms of production of insulin, as well as having limited amounts of glucagon to raise glucose if levels go low, so it can be tricky to manage things.
 
Hello @alandavies and Welcome,
alandavies said:
in October 2023 I had a recurrence of kidney cancer in my pancreas - I had surgery (successful) to remove it but I am now type 1 diabetes.
Click to expand...
Could you please clarify if your surgery was a total or partial pancreatectomy?
alandavies said:
For the last 6 months I’ve been running high and low in terms of blood sugar and with my diabetic nurse trying different splits and doses of rapid acting and background insulin - with various degrees of success.

I was prescribed Creon when I was discharged from hospital and after 12 months I have stopped using it with no side effects in terms of bowels etc.

My question is, is there a relationship between Creon and my challenges of getting my diabetes under control? I’d rather live without Creon if I can.
Click to expand...
The principle relationship between Creon and diabetes is in the consequence of incomplete digestion of food eaten when there is insufficient digestive enzymes and insufficient Creon to replace missing digestive enzymes.

A tiny bit of digestive enzymes can come from our saliva; but the vast majority of digestive enzymes are released by our pancreas. I had a total pancreatectomy so inevitably I effectively surrendered all my digestive enzymes. So most of any food I eat doesn't get a half reasonable chance of being digested and so the assumed conversion of carbs into glucose simply doesn't occur. Making my insulin ratios very inconsistent for both food and corrections from highs.

I struggled greatly for the first 12 months and food digestion was a problem. However, in hindsight, I was very focused on recovering from my surgery and exercising a lot. Gently at first but increasingly as I got stronger; walking a lot and gardening (including a lot of lawn mowing and removing a substantial hedge). I knew I would be having chemo some 3-4 months after my original surgery and I was determined to get myself strong and fit to cope with the chemo. I had no CGM for those first 12 months and although I was getting guidance from a DSN out of my local hospital I had no explanation from her about why she was changing my insulin dosing and I certainly got no sense of anything being changed to cover my increasing exercise regime. It was a long time before I found out that regular exercise could alter my insulin ratios significantly and the effect of this exercise could last up to 2 days.

As has already been said you are actually Type 3c, with a damaged pancreas and not T1, your unlikely to have the autoimmune circumstances that defines the diagnosis of T1. At this moment that is possibly semantics. But if your surgery was a partial rather than a total pancreatectomy you might end up with further degradation of your pancreas, including pancreatitis in future years.
 
welcome to the forum @alandavies

There’s a little more information about type 3c here:

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...
www.diabetes.org.uk www.diabetes.org.uk

It’s not a classification that is particularly well known outside of specialist diabetes services (and sometimes within them!), so some of the subtle differences between managing T3c and T1 can sometimes get overlooked. :(
 
A creonista here. Not noticed any problems with the Creon and glucose levels. Couldn't without the Creon in fact I was badly malnourished before I went on it.
 
alandavies said:
in October 2023 I had a recurrence of kidney cancer in my pancreas - I had surgery (successful) to remove it but I am now type 1 diabetes.

For the last 6 months I’ve been running high and low in terms of blood sugar and with my diabetic nurse trying different splits and doses of rapid acting and background insulin - with various degrees of success.

I was prescribed Creon when I was discharged from hospital and after 12 months I have stopped using it with no side effects in terms of bowels etc.

My question is , is there a relationship between Creon and my challenges of getting my diabetes under control? I’d rather live without Creon if I can

What do you think?

First time question so hope I’ve added enough detail….
Click to expand...
Alan i don't have a pancreas and for me there is a big correlation between creon dosage and blood glucose levels. Creon has 3 main enzymes - Lipase (digest fat), Protease (digest protein), Amylase (digest carbohydrate). If you don't use enough Creon (or Nutrizym) then you do not digest all the carbs you have eaten. If you are carb counting them your carb insulin ratio will be impacted by taking too little Creon. For example Carbs Counted 100, Fast Acting Insulin 10, but carbs digested 70..........you run the risk of a hypo due to over bolusing.

When I first became Insulin Dependent I was seen at T1 Clinic and for 2 years we tried every combination of slow and fast acting insulins. Could not find any consistency and was lucky to get a pump and only need to use fast acting insulin.

I understand what you mean by the potential impact on bowel movements from not taking Creon. Watch out for another - joint, ligament, muscle pain. I recently had a spell under dosing my Creon as the GP said i took too many. I had a few months of pain. I got my prescription increased by the MDT and within 2 weeks most of the pain had gone / reduced - if you are not digesting nutrients there could be side effects.
 
Hi all thanks for the responses
To answer a couple of questions, I still have some pancreas remaining but have no idea of its functional capability. I have been using nova rapid 14 units pre meal (currently experimenting with increasing the time between injection and food….) I have 27 units of Lantus solstar twice a day once when I get up and the other in the evening.

I have attached my readings from the liber link over the last 3 days and look forward to hearing more…

I’m looking at the information of diabetic 3c - never heard of that before!

Thanks again for the comments and support glad I found this forum
 

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Despite 'what they tell us' about Lantus, no way Jose does it ever drip out the same amount of usefulness throughout its potency. It has a peak in activity 4 to 5 hours ish after injecting it.

Some timings would help interpret the Libre graphs though, please. What times did you eat, go to bed and get up again those days? I can see when you had lunch after which your BG shot up - but thereafter came back down again nicely within a couple of hours. W-H-Y does it not do that after the next meal then? Any idea of the carb counts of whatever you did eat?
 
Well I think it is fair to say that you are digesting carbs OK from those post meal spikes, so if you are not taking the Creon at the moment then you are probably right that you don't need it.

It would help both you and your nurse if you notate on your Libre when you inject insulin and when you eat and when you do exercise, even if it is just a bit of gardening or energetic housework or walking the dogs or whatever.... it doesn't have to mean going to the gym.
Not saying you have to notate everything for the rest of your life, but it helps understand what is going on and figuring out how to correct it, when your levels are unstable like this.

As Jenny says, your lunch spikes on the 10th and 11th are pretty obvious and come back down more or less to where you started from, so it looks like you got those two meals pretty well spot on with insulin, but injecting the insulin a little earlier ahead of eating would help lower those spikes. The evening meals mostly look to be underbolused (underdosed) judging by how levels head into orbit and stay there. Knowing what those meals were and how big the were, and doing a rough carb count would be helpful.
I take it that you are on set doses so you are taking 14 units of NovoRapid before each meal, which looks to be working reasonably well for lunch but not enough for your evening meals.

There is a downward trend overnight which suggests your evening dose of Lantus may be too much. The morning dose is less clear. The base levels of your graph on the 9th looks to be dropping and possibly on the 11th too, suggesting that morning basal insulin dose may also be a little too much, but the 10th isn't showing any obvious trend other than that underbolused evening meal, which is heading for orbit!! It would be helpful to know what that meal in particular consisted of. When you levels take off like that, it can be helpful to do a little exercise if you are able. I have just run up and down stairs five times, to bring my levels down a bit as they were higher than I like. If you have an exercise bike that can work well or a brisk walk round the block. Again, notate on your Libre that you have taken exercise to try to deal with it.
 
Hi Alan,
The others have provided all the background info about the relationship between Creon and BG and useful advice on countering it.
Again as others have said being 3c is more brittle due to the Alpha cells ( Glucagon regulating) affected as well as Beta cells ( insulin responsive).
I can’t really add anything new and in fairness I manage my BG levels fairly well since my diagnosis 8 months ago and although my levels do change I very rarely drop into 3s or go above 12 and have never had a clinical hypo of any description.
Certainly overnight my levels are fairly flat and move during the day within expected patterns.I do actually have snacks etc and some meals without Creon( though normally take it) but I can’t say I notice any specific effect on my BG levels.
I also think I take reasonable levels of insulin so 4-6 per meal and 6u of basal and am reasonably responsive to NR sone just monitor my levels according to my Libre and that works fine for me.
So yes there is an undoubted correlation between undigested food and BG levels and Creon can affect that but it is going to be very individual.
Wishing you ATB
 
Thanks for the responses I’ll take some notes on food injection and exercise to see what’s happening - also I forgot to mention behind all this I’ve been on immunotherapy which can create some insulin resistance!!!

Thanks again and speak soon

Alan
 
That explains the larger insulin doses I guess and will no doubt be making it more tricky.

I hope you are not feeling too overwhelmed by the comments and all there is to think about. Diabetes management with insulin is complicated and contrary and very individual, so you gradually have to become the expert in your own diabetes, rather than rely on health care professionals to tell you what your doses need to be, like most other conditions. It involves quite a bit of experimentation with yourself as the guinea pig and keeping notes of those experiments helps you to see patterns.

When do you take the immunosuppressants? Just wondering if that is why your evening levels shoot up or if the half life of those drugs is very long and would not have an impact at such a particular time? I suppose it is likely that you just have a bigger meal in the evening and that is the sole reason for it.

Wishing you lots of luck with your battle against cancer and do keep coming back to the forum to learn more when you are ready and ask as many questions as you like. We all started knowing nothing and the forum is a great resource for learning practical stuff about using insulin. Gradually it starts to make a bit of sense and becomes more manageable, but we all have days and sometimes weeks when it goes haywire and you have to just do your best until you sail into calmer waters again. At the moment, you are a novice experiencing quite a rough storm, so hang in there, it will get easier and we are here to support you however we can.
 
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