Type 3c and Alcohol

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Wendal

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Type 3c
I know this is not directly diabetes related but know this may be of interest to a few.
After my acute pancreatitis attack ( gall bladder related) I was advised not to drink alcohol for fear of triggering another attack but told having a one off glass of something would not cause any issues.
My attack was in April 2021 and I have not had one alcoholic drink since and happy to do so but would appreciate any other Type 3Cs who may wish to comment on their own experience.
I understand it may make a difference depending on whether your pancreas was removed but mine is still intact just extensive necrosis of exocrine cells.
ATB
 
After my very first pancreatitis attack in 2001, caused by gallstones, and a six week stint in hospital I was told not to drink alcohol for six months. I was never a big drinker so wasn’t too bothered. When I did start to drink alcohol again, wine only as I’m not a spirit or beer drinker, I didn’t like the wine I always drank before. I did eventually find something I liked. When I had 2/3 of my pancreas removed 7 years later, my alcohol was the last thing on my mind and no one mentioned not to drink. Again, when I started to drink again I didn’t like the wine I’d changed to 7 years previously! I do have the odd glass of wine ( usually in social settings) but can go months without. I just don’t have the taste for it anymore.
 
Thanks Eggy.
It was you that prompted me to post as I think you did mention in a recent effort that you were looking forward to a glass of wine. In contrast I think Zippy Jo posted that she had not touched alcohol since and that has been my position.
Like you I am not a big drinker but on certain occasions like we have our works Xmas do in Edinburgh next week it would be nice just to have a celebratory glass.
However as you will be aware I am doing all I can to avoid another attack hence no alcohol but I am very interested in others experience who have been in the same position.
Anyway thanks again for your thoughts
 
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Wendal said:
I know this is not directly diabetes related but know this may be of interest to a few.
After my acute pancreatitis attack ( gall bladder related) I was advised not to drink alcohol for fear of triggering another attack but told having a one off glass of something would not cause any issues.
My attack was in April 2021 and I have not had one alcoholic drink since and happy to do so but would appreciate any other Type 3Cs who may wish to comment on their own experience.
I understand it may make a difference depending on whether your pancreas was removed but mine is still intact just extensive necrosis of exocrine cells.
ATB
Click to expand...
I'm speaking for my wife Sue she is similar to you regarding her pancreatitis and hasn't drank any alcohol since being ill although was never a drinker any way , Sue has now had her gallbladder removed so maybe she will have the odd tiple in the future but with having an ileostomy alcohol can cause issues with watery output which is more of a concern for Sue.
 
I was told never to drink alcohol again after necrotising pancreatis (caused by gallstones) as any alcohol could irritate the pancreas.
It took a long time for the inflammation to go down for me. Eating was difficult enough for a long time so I wouldn't have considered alcohol at that point.
I now have the occasional sip of something sparkly as a toast or in a very diluted spritzer. Trying to get back to normal.life was difficult when having to find a soft (and preferably low sugar) drink for toasts at celebrations.
I was only an occasional drinker beforehand so most of the time it hasn't been much of a hardship (and I'm usually driving).
Advice given to me by the dietician when I asked about this last year was that even this tiny amount of alcohol would probably have caused problems if it was going to do so. However I was reminded that the official advice is not to drink!
 
From my perspective as someone with no pancreas whatsoever:

20 years ago I consumed quite a lot of alcohol, sporadically. Then I returned to UK and initially was driving a lot, so chose to greatly reduce my alcohol consumption and not jeopardise my licence.

After my Whipples in Feb 20 I stopped drinking any alcohol - not so much because I was concerned about possible consequences, but because my BG management was extremely poor (insufficient explanation and training, along with chemo) and I deliberately kept one possible factor for my erratic BG out of the equation. At some point in 2021 I started to have the occasional glass of wine or a whisky and water and that has continued through to today. I may have 2 or 3units in a month.

Because I drink alcohol so infrequently I still haven't identified any particular pattern of behaviour in relation to my D management. I spent 5 days in France earlier this Autumn as part of a 25 strong social Group and we wined and dined generously. Because we were eating out for lunches and dinners I struggled to keep a decent grip on my D during those 5 days and that was almost certainly further aggravated by drinking a fair amount of alcohol. But when we got back I just returned to my post Whipple pattern of little and infrequently.

I admit I'm fairly anxious about the possibility of alcohol making my D management difficult unnecessarily, so that is a significant influencer of my moderation. I am also happy to take the financial gain from this newish lifestyle.
 
Morning thanks for the replies and good to get advice and actual experience of others in dealing with some of these issues.
Although I did enjoy a nice pint of beer or glass of wine giving it up was not a huge decision when balanced against increasing the risk of another attack.
It was more about finding a way to enjoy those many social occasions where alcohol is present and at the time I had restricted my diet a lot ( very low fat post pancreatitis) so it was about more than just missing out on alcohol.
Once I got my diet sorted so I could eat as normal I was far happier at such social gatherings and basically got back to usual but stuck with soft drinks.
I have not even tried the non alcoholic alternatives but again has anyone moved onto non or low alcoholic options as a way of fitting in better.
I am much happier now but must admit when on my very strict low fat diet and no alcohol for a few months after my attack I not only lost a lot of weight and felt lacking in energy but did not want to engage socially which for me is important as I hated having to check in advance whether there was cream in the soup or butter on the bread etc.
Once I saw my dietician who said my diet was far too restrictive and I got in the Creon everything changed and life pretty much got back to normal.
I found that experience in helping prepare me for the diabetes challenge very helpful as I found diet options much less restrictive.
 
Wendal said:
Morning thanks for the replies and good to get advice and actual experience of others in dealing with some of these issues.
Although I did enjoy a nice pint of beer or glass of wine giving it up was not a huge decision when balanced against increasing the risk of another attack.
It was more about finding a way to enjoy those many social occasions where alcohol is present and at the time I had restricted my diet a lot ( very low fat post pancreatitis) so it was about more than just missing out on alcohol.
Once I got my diet sorted so I could eat as normal I was far happier at such social gatherings and basically got back to usual but stuck with soft drinks.
I have not even tried the non alcoholic alternatives but again has anyone moved onto non or low alcoholic options as a way of fitting in better.
I am much happier now but must admit when on my very strict low fat diet and no alcohol for a few months after my attack I not only lost a lot of weight and felt lacking in energy but did not want to engage socially which for me is important as I hated having to check in advance whether there was cream in the soup or butter on the bread etc.
Once I saw my dietician who said my diet was far too restrictive and I got in the Creon everything changed and life pretty much got back to normal.
I found that experience in helping prepare me for the diabetes challenge very helpful as I found diet options much less restrictive.
Click to expand...
Yes, it's interesting and useful to know what others do.

During my first 12 months I had no CGM, so that didn't help my erratic BG. My current G7 is sufficiently good that I can trust the displayed reading. Thanks to you asking here, I'm going to not increase my infrequent alcohol but at least try and pay more attention to whether my odd alcoholic drink is having any real impact on my BG. Christmas is coming, we're overseas with no car .... the enquiry (rather than inquisition) will start soon!
 
Yes interesting Roland as is the whole Diabetes challenge.
Am normally in good health and eat pretty much what I want with decent TIR making my decisions on insulin/ exercise etc.
This w/ end have not been feeling too well so not exercising and not eating as much though I did have a Big Mac meal last night.
I have been relying on my BG readings and not had any bolus insulin at all just my normal 6 units of Lantus on Friday night which I reduced to 4 last night.My Libre has shown a flat line for last 48 hours averaging 6.5 and a total unicorn so really surprised with that result.
But just shows how ubiquitous and unpredictable trying to manage this condition can be.
BW
 
Hi @Wendal
Sue my wife has been diagnosed type 3C but so far no one wants to step up and guide her or recommend any treatment .
She has a very damaged pancreas , no gallbladder and only her small bowel with an ileostomy , last HBa1c was 54 so not really high but since then she has had her gallbladder removed .
Sue is on a low residue diet but that can tend to be carb heavy at times , Sue takes 4 25000 Creon capsules with a full meal .
So my long winded question to you is how many Creon and what dose do you take with meals and snacks ?
 
Billy Bob said:
Hi @Wendal
Sue my wife has been diagnosed type 3C but so far no one wants to step up and guide her or recommend any treatment .
She has a very damaged pancreas , no gallbladder and only her small bowel with an ileostomy , last HBa1c was 54 so not really high but since then she has had her gallbladder removed .
Sue is on a low residue diet but that can tend to be carb heavy at times , Sue takes 4 25000 Creon capsules with a full meal .
So my long winded question to you is how many Creon and what dose do you take with meals and snacks ?
Click to expand...
@Billy Bob, I'm not surprised there is reluctance for anyone to step up and guide Sue - she is in a tricky situation where there are really very few people with her twin difficulties of her ileostomy and very limited pancreatic functionality. After my sister's emergency bowel op she found herself struggling just because there was no immediate stoma nurses to guide her and Sue has the double problem. As you are already aware - keeping her digestion working smoothly and with minimal irritation is a major contradiction for managing her diabetes. I suspect Sue is going to have to experiment a fair bit more than the rest of us have to and so trial and learning will, I think, become paramount.

I can't remember @Billy Bob what is Sue's current medications for her Diabetes (or her susceptibility to D)? If a high carb diet is her best option to keep her colon happy and her stoma calm, then she needs whatever treatment that will counter those carbs - probably insulin, ie as if Sue is T1. Just my initial thought, please remember I'm not a medical practitioner.

I believe there is no specific answer to your Creon question. Sue will need what she needs and only she can sort that out from trial and learning. I've just done a search (magnifying glass at top right) for creon quantities and found several different threads that might help you and Sue see what others have to say. I thought I was on industrial quantities, but then @martindt1606 takes way more than I do and @eggyg has arrived at miniscule quantities - just to reinforce that we are all different.
 
@Proud to be erratic
Thank you for taking the time to do a bit of research , I think with the Creon we are doing the right thing dosage wise we have had the best part of 2 years experimenting with different foods to how many Creon and Sue has been able to not use Loperamide unless she is really liquid . As for the diabetes I have a phone call appointment and another HBa1c test before Christmas so I will hound my diabetic nurse about Sue when I speak with her as the receptionist would not book another HBa1c for Sue and if I get nowhere with her then I will put an official complaint in to the practice manager.
Ultimately I need some answers as to how we approach Sue's wellbeing on the diabetic front because I clearly can't do it by diet for her and it's enough of a struggle for my own diet trying not to eat what Sue is eating as I'm struggling to keep my bloods at a reasonable level
 
Billy Bob said:
Hi @Wendal
Sue my wife has been diagnosed type 3C but so far no one wants to step up and guide her or recommend any treatment .
She has a very damaged pancreas , no gallbladder and only her small bowel with an ileostomy , last HBa1c was 54 so not really high but since then she has had her gallbladder removed .
Sue is on a low residue diet but that can tend to be carb heavy at times , Sue takes 4 25000 Creon capsules with a full meal .
So my long winded question to you is how many Creon and what dose do you take with meals and snacks ?
Click to expand...
Morning Billy Bob.
Apologies for delay in responding and primarily hope Sue is making good progress and have followed her story since being on this forum.
My initial dose was 50000 for snacks and 75000 for meals when first put on them in Sept 21 and that has not changed since.
Post hospital during my recovery I simply adopted an ultra low fat diet to protect my pancreas and I lost weight and was very tired but not surprising. I then seemed to get weak either due to a bit of Pancreatic Exocrine Insufficiency or simply my diet so I consulted a dietician.
She told me the priority was to get more fat in my diet and to start taking Creon at the dose I said.
It was transformational as I slowly increased my appetite and food choice and got my energy back and got back to work etc.I literally was back to normal and could eat more or less what I wanted and even missed the odd Creon dose without any issues.
Then diagnosed with diabetes in August and trying to get to grips with that and tried a lower carb approach at first but seemed to be managing fine so again more or less eating what I wanted.
Again with no digestive issues until literally a few days ago but not sure what is causing that precisely.
ATB
 
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PS Billybob I had my gallbladder removed in July 21 and told I had extensive necrosis of my exocrine cells but had no specific diagnosis of how much pancreas was still working.
 
I had my gall bladder removed 2002, before then I was a consultant spending most weeks abroad. Not the best lifestyle - hotel / restaurant food, usually in a team of 4 - 6 so always someone to have a drink with - especially on a bad day. After the gall bladder was removed i was told the pancreatic scars were not alcohol related and drinking in moderation should be OK however i reduced my drinking to celebration events only. After the total pancreatectomy in 2010 alcohol was limited to a glass of champagne at weddings or new year although stopped that 3 years ago as even half a glass gives me a bad headache.

The creon has built up to 18*25000 per meal over time, but I am finding that this is becoming more food specific. For example whilst bacon & ham are OK at that level since 2002 I have never had a good experience with roast pork (probably pig revenge) and more recently home made pasta (although not shop bought or restaurant). The last time i made pasta from scratch I had 24 Creon and that was not enough. GP gave me a celiac test but that was negative.

Recently had a lunch event where the food can best be described as bland with minimal fat or carb. For some reason I had forgot to bring the creon along.........that was a big wake up call and a reminder not to get complacent.🙄
 
Wendal said:
PS Billybob I had my gallbladder removed in July 21 and told I had extensive necrosis of my exocrine cells but had no specific diagnosis of how much pancreas was still working.
Click to expand...
Like wise with Sue she has never been told how damaged her pancreas is , someone mentioned a lipase test to see how well it is working so I think I will try to see what this involves ?
 
martindt1606 said:
I had my gall bladder removed 2002, before then I was a consultant spending most weeks abroad. Not the best lifestyle - hotel / restaurant food, usually in a team of 4 - 6 so always someone to have a drink with - especially on a bad day. After the gall bladder was removed i was told the pancreatic scars were not alcohol related and drinking in moderation should be OK however i reduced my drinking to celebration events only. After the total pancreatectomy in 2010 alcohol was limited to a glass of champagne at weddings or new year although stopped that 3 years ago as even half a glass gives me a bad headache.

The creon has built up to 18*25000 per meal over time, but I am finding that this is becoming more food specific. For example whilst bacon & ham are OK at that level since 2002 I have never had a good experience with roast pork (probably pig revenge) and more recently home made pasta (although not shop bought or restaurant). The last time i made pasta from scratch I had 24 Creon and that was not enough. GP gave me a celiac test but that was negative.

Recently had a lunch event where the food can best be described as bland with minimal fat or carb. For some reason I had forgot to bring the creon along.........that was a big wake up call and a reminder not to get complacent.🙄
Click to expand...
I think sometimes we are becoming circus acts juggling with things to try and get the right results :D
 
Billy Bob said:
I think sometimes we are becoming circus acts juggling with things to try and get the right results :D
Click to expand...
I used to work in software development and implementation for a core banking solution that ran on an IBM AS400. I sometimes wish the AS400 was small enough to be portable and that i could plug my brain in to utilise its processing power.
 
Hi Martin.Hope you don’t mind me asking but what were the specific symptoms when you consumed the food without the Creon.
As I said I have missed my Creon doses on odd occasions and not suffered any discomfort re pancreatic pain but wondered if there may be other warning signs I want to be aware of.
Thanks in advance
 
The Creon isn’t for pancreatitis it’s to replace the digestive enzymes your pancreas isn’t producing as it’s damaged, Not taking any or not enough can cause explosive diarrhoea! TMI? Basically, your food goes straight through, it doesn’t pass Go and it doesn’t collect £200! Creon isn’t a drug do you can’t overdose on it. You need what you need.
 
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