Hi, my husband has just had his pancreas removed, along with other things, and so immediately became type 1 diabetic. Slightly complicated as he also had his spleen removed so he has to take Crean capsules with most foods, especially with any fat content. Would welcome any device from others who have gone through this massive life change.
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- Thread starter JanBain
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rebrascora
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Hi and welcome.
Your husband is actually a Type 3c diabetic but should be treated as a Type 1 although he does have additional complications beyond Type 1 and the need for Creon.
Diabetes Type is categorized according to the cause. Type 1 is due to autoimmune attack on the beta cells which produce insulin. Type 3c is due to disease, trauma or damage (including partial or total surgical removal) to the pancreas. We have quite a few regular Type 3c diabetics on the forum including @Proud to be erratic who has also had a total removal and @Wendal. Hopefully you and your husband will be able to benefit from their experience.
Which insulins has your husband been given and does he have a sensor to monitor his levels and if so, which one Libre 2 or Dexcom One or some other.
How are you both managing? It is a lot to take in and can be really overwhelming at first but I promise it does get easier.
Does he also have antibiotics to take daily to compensate for his lack of spleen?
Your husband is actually a Type 3c diabetic but should be treated as a Type 1 although he does have additional complications beyond Type 1 and the need for Creon.
Diabetes Type is categorized according to the cause. Type 1 is due to autoimmune attack on the beta cells which produce insulin. Type 3c is due to disease, trauma or damage (including partial or total surgical removal) to the pancreas. We have quite a few regular Type 3c diabetics on the forum including @Proud to be erratic who has also had a total removal and @Wendal. Hopefully you and your husband will be able to benefit from their experience.
Which insulins has your husband been given and does he have a sensor to monitor his levels and if so, which one Libre 2 or Dexcom One or some other.
How are you both managing? It is a lot to take in and can be really overwhelming at first but I promise it does get easier.
Does he also have antibiotics to take daily to compensate for his lack of spleen?
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome @JanBain 🙂 As @rebrascora says, that would be Type3c.There’s some basic information here:
www.diabetes.org.uk
We have some very helpful Type 3c people here. We also have others that aren’t 3c but take Creon, so whatever questions you have hopefully we can help.
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...
We have some very helpful Type 3c people here. We also have others that aren’t 3c but take Creon, so whatever questions you have hopefully we can help.
Whilst to my understanding, diabetes due to a damaged pancreas is referred to as Type 3c, it seems to be a less known term. Therefore, it is common for doctors to call it Type 1 as the treatment is the same.
I guess it makes it easier than having to explain what it means every time.
I guess it makes it easier than having to explain what it means every time.
Hi JanB.,
Hope you are well and sorry your husband has joined this club.
As Barbara said it will very likely be Type 3c that he is ultimately classified as the removal of his pancreas will have brought about the diabetes due to the lack of any functioning Beta cells ( which produce the insulin).
He would be classified as Type 1 on the basis he requires exogenous insulin and that enables him to qualify for a continuous BG monitor which will be invaluable.
I still have some functioning pancreas so am able to produce some insulin but still require injections and also Creon.
The other thing to be aware of the removal of his Pancreas will also mean the Alpha cells which produce Glucagon so basically kick in when the BG level drops quickly will mean that his diabetes will be more brittle so more difficult to manage but still very possible.
Roland or proudtobeerratic and some others who have had their pancreas and/ or spleen removed will be able to advise you better as I find at the moment ( diagnosed about 9 months ago ) that I can manage my diabetes very well and basically live a very normal life and pre diagnosis diet etc
Anyway as time goes by things will get easier and their is great advice and support on this forum and glad you have found it so please feel free to ask questions or share thoughts/ comments.
rebrascora
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But unless people use it, the term will continue to be unfamiliar and there can be added complications with Type 3c, so important to have it correctly documented and understood. .
It was only 2 weeks tomorrow since he had his op, in the early days of stabilising things. He has been nominated for a sensor, not sure of the wait times. Think he needs to be stabilised first. Diabetes specialist nurse we have been working with calls it Type 1, will ask her at our next meeting on Thursday about Type 3c. To be honest my biggest worry at the moment is getting Creon as apparently there is a world shortage of it, even the hospital was in short supply. We live in N Scotland so not many large chemists near to hand.
Oh and he has also been put forward for a pump, think that is a bit more in the future though. His pancreas was removed because of a massive pre cancerous tumour only found through MRI scans for aggressive prostate cancer which had to be treated first.
Proud to be erratic
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Hello @JanBain. Don't worry about the Creon shortage.
Firstly it comes in 10k capsules and 25k capsules. From time to time a member asks about how much Creon is needed and the answers are extremely wide ranging from very little to a lot; many people will get enough help from just the smaller capsules. There are absolutely no problems with the availability of the smaller 10k capsules - just the larger 25k capsules.
Secondly we are all guilty of using a manufacturer's product name (CREON), rather than the generic descriptor. [Akin to calling all vacuum cleaners "Hoovers", which is what we did so many years ago when I was a young lad!]. CREON is one of several Pancreatic Enzyme Replacement Treatments (PERT) and the pancreas is the normal home of our digestive enzymes.
Pancreatic surgery can compromise those digestive enzymes, leading to a patient needing PERT after pancreatic surgery, as well as to help with many other digestive problems (nothing to do with pancreatic surgery). In your husband's case it sounds as though he had a total pancreatectomy (as I did in Feb 2020) and he definitely will need PERT - but there is plenty of it around. It's just large CREON capsules where there is the supply problem.
There are 4 different brands of PERT available from the NHS Formulary that can be prescribed. Each has subtly different chemical compositions. When the CREON problem raised its head a few months ago the Pharmacist from my local Medical Centre (a supersized equivalent of a GP Surgery, with many GPs in one 3 story building) was asked to find the best alternative for me. Her research found that Nutrizyme was a possibility. You don't hear about Nutrizyme shortages - because there aren't any!
So far I have managed to capture enough CREON to hold a solid 30+ day surplus of large capsules and I take a mix of small and large capsules to soften the supply problem. I also have Nutrizyme to fall back on if needed.
Also, don't get too bogged down in whether your husband's formal diagnosis is T1 or T3c. Because, sadly, many Health Care Professionals (HCPs) don't know what T3c is or means, it is far better that any HCP see your husband as T1 rather than T2 and automatically assume he is insulin dependent. Most T3cs are as if T1, ie insulin dependent, and also have a second or third co-morbidity; perhaps cancer, or damage to their pancreas from steroid overload or alcohol overload; or severe pancreatitis. These additional major ailments can mean that their diabetes is not always the primary medical concern or the treatment for other ailments might be in complete contradiction to diabetes management. Their diagnosis of T3c should, in theory, alert any HCP to the possibility that any T3c might be pretty complicated and the patient should come under more than one Consultant.
Your husband might find the next 12 months pretty tough as he recovers from the Surgery, perhaps has to have a bit more "adjuvant" chemotherapy as a further precaution and gets to grips with his diabetes management. I have had my share of this. But I am alive and grateful to be near back to normal and do most of the things I previously did. Please do keep asking questions and keeping us up to date on your husband's progress. Forum members are very happy to share their knowledge and experience.
Firstly it comes in 10k capsules and 25k capsules. From time to time a member asks about how much Creon is needed and the answers are extremely wide ranging from very little to a lot; many people will get enough help from just the smaller capsules. There are absolutely no problems with the availability of the smaller 10k capsules - just the larger 25k capsules.
Secondly we are all guilty of using a manufacturer's product name (CREON), rather than the generic descriptor. [Akin to calling all vacuum cleaners "Hoovers", which is what we did so many years ago when I was a young lad!]. CREON is one of several Pancreatic Enzyme Replacement Treatments (PERT) and the pancreas is the normal home of our digestive enzymes.
Pancreatic surgery can compromise those digestive enzymes, leading to a patient needing PERT after pancreatic surgery, as well as to help with many other digestive problems (nothing to do with pancreatic surgery). In your husband's case it sounds as though he had a total pancreatectomy (as I did in Feb 2020) and he definitely will need PERT - but there is plenty of it around. It's just large CREON capsules where there is the supply problem.
There are 4 different brands of PERT available from the NHS Formulary that can be prescribed. Each has subtly different chemical compositions. When the CREON problem raised its head a few months ago the Pharmacist from my local Medical Centre (a supersized equivalent of a GP Surgery, with many GPs in one 3 story building) was asked to find the best alternative for me. Her research found that Nutrizyme was a possibility. You don't hear about Nutrizyme shortages - because there aren't any!
So far I have managed to capture enough CREON to hold a solid 30+ day surplus of large capsules and I take a mix of small and large capsules to soften the supply problem. I also have Nutrizyme to fall back on if needed.
Also, don't get too bogged down in whether your husband's formal diagnosis is T1 or T3c. Because, sadly, many Health Care Professionals (HCPs) don't know what T3c is or means, it is far better that any HCP see your husband as T1 rather than T2 and automatically assume he is insulin dependent. Most T3cs are as if T1, ie insulin dependent, and also have a second or third co-morbidity; perhaps cancer, or damage to their pancreas from steroid overload or alcohol overload; or severe pancreatitis. These additional major ailments can mean that their diabetes is not always the primary medical concern or the treatment for other ailments might be in complete contradiction to diabetes management. Their diagnosis of T3c should, in theory, alert any HCP to the possibility that any T3c might be pretty complicated and the patient should come under more than one Consultant.
Your husband might find the next 12 months pretty tough as he recovers from the Surgery, perhaps has to have a bit more "adjuvant" chemotherapy as a further precaution and gets to grips with his diabetes management. I have had my share of this. But I am alive and grateful to be near back to normal and do most of the things I previously did. Please do keep asking questions and keeping us up to date on your husband's progress. Forum members are very happy to share their knowledge and experience.
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Welcome to the forum @JanBain
Sorry to hear about your husband’s sudden entry into the world of diabetes 😱 But glad to hear his precancerous tumour was operated on promptly. I lost my wife to Pancreatic Cancer a few years ago, so it’s no friend of mine!
Hope his prostate treatment goes well. I’d imagine with all of that going on, pesky diabetes and faffing around with insulin and creon must feel like an unwelcome and irritating distraction!
Diabetes is a serious condition, but it’s also one that can usually be managed well with a few changes and adaptations, and the ‘right’* doses and insulin timing - it’s something that he can learn to live well with, and it shouldn’t stop him doing things he enjoys.
* Subject to change without notice. Doses can need to go down as well as up. Etc etc…
Sorry to hear about your husband’s sudden entry into the world of diabetes 😱 But glad to hear his precancerous tumour was operated on promptly. I lost my wife to Pancreatic Cancer a few years ago, so it’s no friend of mine!
Hope his prostate treatment goes well. I’d imagine with all of that going on, pesky diabetes and faffing around with insulin and creon must feel like an unwelcome and irritating distraction!
Diabetes is a serious condition, but it’s also one that can usually be managed well with a few changes and adaptations, and the ‘right’* doses and insulin timing - it’s something that he can learn to live well with, and it shouldn’t stop him doing things he enjoys.
* Subject to change without notice. Doses can need to go down as well as up. Etc etc…
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