Any Type 3c's on Creon?

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Austin_98

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How much does it help?
I have diarrhea most of the time but kindof got used to it over the last few years, but had an accident for the first time last night I now I keep having to go sit on the toilet to fart 'cause I'm scared it's gonna happen again. Thinking about ringing my doctor to ask to go on Creon, hoping it will fix things?
 
Austin_98 said:
How much does it help?
I have diarrhea most of the time but kindof got used to it over the last few years, but had an accident for the first time last night I now I keep having to go sit on the toilet to fart 'cause I'm scared it's gonna happen again. Thinking about ringing my doctor to ask to go on Creon, hoping it will fix things?
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Sounds as if you need to ring your doctor anyway asap. That is not a good situation to be in. I have heard that many if not most people with 3c need to take Creon.
 
Austin_98 said:
How much does it help?
I have diarrhea most of the time but kindof got used to it over the last few years, but had an accident for the first time last night I now I keep having to go sit on the toilet to fart 'cause I'm scared it's gonna happen again. Thinking about ringing my doctor to ask to go on Creon, hoping it will fix things?
Click to expand...
Hello Austin_98,

I have no pancreas and take Creon (described by a Gastroenterologist as in "industrial quantities" but by no means as much as another member here). But my Creon is specifically as part of the replacement needed for my digestive enzymes, removed because these were intrinsically part of my pancreas. I am NOT an authority for all the potential of Creon but my instinct is that this medication is a necessary Pancreatic Enzyme Replacement Therapy (PERT) but is not a "cure" for gastric disorders.

When I get my Creon dosing wrong I tend to have explosive, offensively smelly, urgent bowel evacuations. This is not diarrhoea in the sense of an uncontrollable release of a near liquid, possibly arising from eating something that disagreed with me (in the past) but rather a hugely inconvenient "dumping" or evacuation of my bowels (apologies if this is tmi). Once it's happened and I've got beyond the anger, embarassment and distress from the necessary clean-up of myself and the bathroom I can close that event by more careful (usually = more) taking of Creon with my next snack or main meal.

Previously I've had continuous bowel control problems and they were finally pinned down to an unusual infection which needed an unusual antibiotic. It needed a gastroenterologist to eliminate the possibilities etc and his systematic process of tests, mainly blood tests found the problem. My T3c and Creon was neither the cause nor the solution.

I agree with @Leadinglights that you should reach out to your GP. Meanwhile I have used Imodium to give me some stability; this is not an advert for that drug, it's just a medication that has helped me, particularly during my chemo which had freely declared side effects of diarrhoea.
 
@Austin_98, having seen the additional information from the recent postings in the weight loss group section of the forum, (thanks @rebrascora) perhaps you should at least ask your GP to add Creon back to your repeat prescriptions and re-try that.

What I was told by the Surgeons who removed my pancreas, along with dieticians and the gastroenterologist - there is no risk of overdosing on Creon. Its not that sort of medication and any surplus Creon passes through relatively harmlessly. Anyway in light of your present circumstances you seem to have little to lose and possibly a lot to gain. If you can't get prompt assistance from your GP do try asking a good Pharmacist for advice on over the counter meds or what might be possible from drugs on prescription.

There is a colour chart available from the NHS online that helps those needing to look (!) to better describe their output to a GP or any appropriate Health Care Professional (HCP). You would help yourself to help whoever you reach out to by getting a better description. Alas!
 
Following on from the comments from @Proud to be erratic I've also been told that you can't overdose on Creon.
The idea is to gradually increase the dose until symptoms resolve. Saying that, I'm not claiming that I always get the dosing right for every meal!
Hoping that you get the Creon prescribed again so that you can start seeing an improvement. I have very little pancreas left and couldn't manage without Creon.

I've just realised that I missed your introductory thread. Welcome to the forum from another 3c who's here due to one severe attack of pancreatitis.
 
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Proud to be erratic said:
Hello Austin_98,

I have no pancreas and take Creon (described by a Gastroenterologist as in "industrial quantities" but by no means as much as another member here). But my Creon is specifically as part of the replacement needed for my digestive enzymes, removed because these were intrinsically part of my pancreas. I am NOT an authority for all the potential of Creon but my instinct is that this medication is a necessary Pancreatic Enzyme Replacement Therapy (PERT) but is not a "cure" for gastric disorders.

When I get my Creon dosing wrong I tend to have explosive, offensively smelly, urgent bowel evacuations. This is not diarrhoea in the sense of an uncontrollable release of a near liquid, possibly arising from eating something that disagreed with me (in the past) but rather a hugely inconvenient "dumping" or evacuation of my bowels (apologies if this is tmi). Once it's happened and I've got beyond the anger, embarassment and distress from the necessary clean-up of myself and the bathroom I can close that event by more careful (usually = more) taking of Creon with my next snack or main meal.

Previously I've had continuous bowel control problems and they were finally pinned down to an unusual infection which needed an unusual antibiotic. It needed a gastroenterologist to eliminate the possibilities etc and his systematic process of tests, mainly blood tests found the problem. My T3c and Creon was neither the cause nor the solution.

I agree with @Leadinglights that you should reach out to your GP. Meanwhile I have used Imodium to give me some stability; this is not an advert for that drug, it's just a medication that has helped me, particularly during my chemo which had freely declared side effects of diarrhoea.
Click to expand...
That pretty much summarises life without a pancreas.........have just booked GP appointment to discuss increasing my industrial quantity prescription, although already anticipating that they will say only if your consultant says so.
 
Austin echo others thoughts re giving the Creon another try.
There is no downside apart from having to remember to take them but you soon get into routine and I have had no issues since taking them
 
soupdragon said:
Following on from the comments from @Proud to be erratic I've also been told that you can't overdose on Creon.
The idea is to gradually increase the dose until symptoms resolve. Saying that, I'm not claiming that I always get the dosing right for every meal!
Hoping that you get the Creon prescribed again so that you can start seeing an improvement. I have very little pancreas left and couldn't manage without Creon.

I've just realised that I missed your introductory thread. Welcome to the forum from another 3c who's here due to one severe attack of pancreatitis.
Click to expand...

Thanks 🙂

Yeah, I think I'll definitely need Creon, too. Nobody ever explained to me anything apart from the diabetes/insulin side so I knew nothing about what Creon actually did or even that the pancreas DID anything other than insulin stuff. I literally only found out a couple days ago via this forum that the pancreas is involved in other digestive processes.
When I had the initial attack of acute pancreatitis, I had 15% function of my pancreas but since then it's reduced to 0% so I'm surprised/annoyed neither my GP nor any of the specialists bothered to explain about Creon to me or how important it was.
 
Hope you find it helps @Austin_98 - it’s a long time to have lived with fairly regular diarrhoea.

Let us know how you get on with it. 🙂
 
Reading all this prompted me to join and say the pancreatic nurse told me after me acute pancreatic attacks that i was maybe type 3 and that creon was needed for myself because i had exocrine insufficiency and low faecal elaste which i was told was basically inabilty for my digestive enzymes to help digest any food or drink , i still suffer with pain and take pain killers which can lead to constipation so i am on a not so merry ground of constipation and then diarrhoea , all this as sent my diabetes into helter skelter of highs and hypos , creon though is an harmless medicine and there is no chance of overdose, but i am still perplexed with type 3 diagnosis i try not to worry about it but i think to myself are these doctors and nurses correct about everything
 
Morning anxious your post is very similar to mine and yes we are not medical professionals but most medical diagnosis is based on a combination of clinical history and various symptoms and relevant test result.
So we can make a logical decision on balance of probabilities but anyway as far as diabetes is concerned generally it is one of two types so a Diabetes deficiency so the Beta cells simply don’t produce enough endogenous insulin so require a source external.
Essentially this is Type 1 but then the cause of this insulin deficiency can be sub divided into other types so Pancreatic damage is classed as Type 3c and if caused by an auto immune condition it is normally labelled as Type 1.
Type 2 is normally classified as insulin resistance where the body is producing some insulin but it is not efficiently processed and hence you get the same result hyperglycaemia and/ or clinical diabetes.
If you have had pancreatic damage the diabetes is often a follow on (can be years later) to damage to your exocrine cells ( insulin producing cells are endocrine) and thst us where you often require Creon to make up for your lack of production of digestive enzymes like Lipssee/ amalase etc which help digest fats/ proteins etc
 
Anxious 63 said:
Reading all this prompted me to join and say the pancreatic nurse told me after me acute pancreatic attacks that i was maybe type 3 and that creon was needed for myself because i had exocrine insufficiency and low faecal elaste which i was told was basically inabilty for my digestive enzymes to help digest any food or drink , i still suffer with pain and take pain killers which can lead to constipation so i am on a not so merry ground of constipation and then diarrhoea , all this as sent my diabetes into helter skelter of highs and hypos , creon though is an harmless medicine and there is no chance of overdose, but i am still perplexed with type 3 diagnosis i try not to worry about it but i think to myself are these doctors and nurses correct about everything
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You really need to be seen by a Gastroenterologists who specialises in these conditions, reason I'm saying this is that you shouldn't be in constant pain or alternating between constipation & diarrhoea if your condition was controlled.

Luckily upon diagnosis of EPI my Dr referred me to the care of a Gastroenterologists who carried out various tests & helped find right balance of creon to take, they were also wise enough to send me for a Dexa Scan to check bone density, not producing enough digestive enzymes can mean your body doesn't absorb calcium properly which can weaken bones long term.

Outcome of own scan was a diagnosis of Osteopenia after which I was started on calcium tabs & drug called anedronic acid for 5 years, during that time also took Vit K2 mk7 which helps the body absorb calcium, consultant didn't suggest vitamin but decided to take it after doing own research.

So do get referred rather than suffer as your doing, help is there but often you need to reach out for it under current stresses of our NHS.
 
nonethewiser said:
You really need to be seen by a Gastroenterologists who specialises in these conditions, reason I'm saying this is that you shouldn't be in constant pain or alternating between constipation & diarrhoea if your condition was controlled.

Luckily upon diagnosis of EPI my Dr referred me to the care of a Gastroenterologists who carried out various tests & helped find right balance of creon to take, they were also wise enough to send me for a Dexa Scan to check bone density, not producing enough digestive enzymes can mean your body doesn't absorb calcium properly which can weaken bones long term.

Outcome of own scan was a diagnosis of Osteopenia after which I was started on calcium tabs & drug called anedronic acid for 5 years, during that time also took Vit K2 mk7 which helps the body absorb calcium, consultant didn't suggest vitamin but decided to take it after doing own research.

So do get referred rather than suffer as your doing, help is there but often you need to reach out for it under current stresses of our NHS.
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Good advice and my Upper GI Consultant did say if I developed any issues digesting foods ( post Acute Pancreatitis) then they had Creon as a choice.
However, my Creon decision was actually influenced by a conversation with a Dietician when my ultra low fat/ carb diet post hospital stay was leaving me no energy and I was losing a lot of weight.
She suggested a total change of diet and to start taking Creon and to be frank my whole life got back to normal based on her advice.
About a year later I had the Diabetes diagnosis ( 6 months in now) but I have stayed on the Creon and have had no issues whatsoever.
If you look at my history I did post on another thread that a few weeks ago I did have some digestive issues which I thought may have been caused by missing a meal with Creon but have since found out it was something totally different and that has now been resolved.
 
nonethewiser said:
You really need to be seen by a Gastroenterologists who specialises in these conditions, reason I'm saying this is that you shouldn't be in constant pain or alternating between constipation & diarrhoea if your condition was controlled.

Luckily upon diagnosis of EPI my Dr referred me to the care of a Gastroenterologists who carried out various tests & helped find right balance of creon to take, they were also wise enough to send me for a Dexa Scan to check bone density, not producing enough digestive enzymes can mean your body doesn't absorb calcium properly which can weaken bones long term.

Outcome of own scan was a diagnosis of Osteopenia after which I was started on calcium tabs & drug called anedronic acid for 5 years, during that time also took Vit K2 mk7 which helps the body absorb calcium, consultant didn't suggest vitamin but decided to take it after doing own research.

So do get referred rather than suffer as your doing, help is there but often you need to reach out for it under current stresses of our NHS.
Click to expand...
 
I am currently under a gastro team and a diabetic team but they did mention calcification but said the bloods did not indicate there was major problem , but like i said in my earlier post i dont find them particularly helpful and i suffer badly from anxiety which further complicates the situation , creon or no creon and i have seen the diabetic dietician
 
Anxious 63 said:
I am currently under a gastro team and a diabetic team but they did mention calcification but said the bloods did not indicate there was major problem , but like i said in my earlier post i dont find them particularly helpful and i suffer badly from anxiety which further complicates the situation , creon or no creon and i have seen the diabetic dietician
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Sorry you are not familiar finding them helpful and afraid your experience is not uncommon.
With all the pressures the medical profession are under and the fact that several parties and departments may be involved can often mean they lack the motivation to try and get to the full cause of an issue but simply deal with the immediate consequence.
I am lucky in that I have a a reasonable knowledge of how the body works so can try and explain what may be going on and a very supportive GP/ employer who are very happy to investigate further or point me in the right direction.
ATB
 
Wendal said:
Sorry you are not familiar finding them helpful and afraid your experience is not uncommon.
With all the pressures the medical profession are under and the fact that several parties and departments may be involved can often mean they lack the motivation to try and get to the full cause of an issue but simply deal with the immediate consequence.
I am lucky in that I have a a reasonable knowledge of how the body works so can try and explain what may be going on and a very supportive GP/ employer who are very happy to investigate further or point me in the right direction.
ATB
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My gp is very good with me and i do know a lot more about the problems i have now where as before 2 years ago when i was diagnosed with acute and severe necrotising pancreatitis plus pneumonia and c-diff and spent 3 months in hospital on pain relief, antibiotics and laxatives and god knows what else , i personally think this had been going on for a long while but they just dismissed it as irritable bowel , diverticulitis or whatever , i think they misdiagnose people all the time especially if you have a history of mental health illness
 
Hi Anxious.Am glad that you have a good GP as that is so important and that you have learned a lot more about your conditions.
Like you I had the necrotising pancreatitis but not the other challenges you faced.It is always difficult when you have other medical challenges in terms of managing holistically and identifying what is the root cause.
People are often happy to attach a particular diagnosis to deal with a set of issues and once labelled it can be hard to shift Drs opinions if they are looking at the clinical history.
However it is crucial to try and get as accurate a diagnosis as possible as that can transform the way your condition can be treated/ managed and your understanding of what us going on is crucial imo to optimise your outcome
 
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