Pancreatic Insufficiency Creon tips please.

[Yammy190]

2nd F Elastase test reveals drop from 44 to 7 in 4 weeks (not happy). HbA1c is fine which is a relief. Consultant expedited urgent CT scan so this might reveal more, hopefully not but still waiting for results. F had PC so heredity link.
3rd week in on Creon and wondering after eating (small meals, reasonably healthy nutrition, lunch/evening) whether others experience urgent need to visit the bathroom which resolves with a lie down and hot water bottle. I’m on 25000 dose 1 snacks 2 main meals. Maybe dose adjustment required? Thanks for reading my post.

 

[Proud to be erratic]

Hello @Yammy190 ,
Since my total panc'y in Feb 2020 I had become an expert in "urgent (explosive) trips to the bathroom", some close calls and some "too late calls". The latter were often more easily 'cleaned' by a shower rather than wiping! Sorry if that is TMI.

I take Creon in what my gastroenterolgist described as industrial quantities, around 30+ 25k capsules daily. But I have no panc'y so no real digestive enzymes; just the minor ones that start digestion once food is in your mouth; they deal well with pure glucose, eg jelly babies for hypo response, but it seems not much more. They mainly send a message to one's pancy telling the panc'y to wake-up, get ready - food is coming. Both my Gastro Consultant, based in Bucks and my original HPB Team in Oxford, along with their dietician, were clear in saying you can't overdose on Creon; what is not used passes through harmlessly.

I take 1 Creon capsule, sometimes 2, even with a milky coffee. And, while there is no relationship between carbs and Creon I find it simplest to take one capsule for every 10 gms of carbs - which gives me a workable guide for how much Creon for any one meal; otherwise I have to scrutinise any meal for fat content first, then dairy and ... well its a faff before making what is still a subjective decision! If it's a zero carb cheese omelette, then I'll take 3 capsules for the fat and protein; seems to work; so I'm not dogmatic about Creon just for carb content.

I used to habitually have to scrutinise my stools, checking they were the appropriate colour as well as good consistency - increasing my Creon to improve colour; the NHS Web site can provide guidance on this (I was given a useful leaflet). The Creon didn't do so much for consistency. It took 26 months for the Gastro to do a test, that he needed higher approval for and then provide an antibiotic, which also needed higher approval; all that after I'd pestered him to check for malabsorption - which it was. He was determined to rule out everything else before exploring that option - at my expense (or so it felt). Of course lock down didn't help. My "urgent trips" have become very rare, since that antibiotic.

My HbA1c is OK for my circumstances. After my malabsorption dilemma was resolved, I had to adjust my once daily basal dose and my bolus ratios. Reading your other posts I don't think you are on insulin, so my insulin doses are less relevant to you, but do show a "cause and effect" correlation in principle.

Overall, I found my optimum Creon intake by trial and error. I think dose adjustment is very useful and necessary. I never had an elastase test, which in hindsight I'm surprised about. Hope this helps in some way.

 

[everydayupsanddowns]

I don’t take Creon, but from reading others’ posts, it seems that you cannot overdose (but that taking too much is no good for bowel movements), and that finding the correct dose is a very individual thing.

Too little or too much, and it seems you can be either bunged up or precariously loose.

Sometimes folks seem to find those bio yoghurts helpful, which can repopulate gut flora?

 

[eggyg]

15 year Creon veteran here. I don’t have a pancreas. It is very much trial and error and there’s times I still don’t get it right. I’m currently taking small doses as I’ve a permanent partially blocked small intestine and too much Creon can cause problems. Oils and cream are my nemesis, always have been. In the “ old days” we had 40k tablets they stopped producing them a few years back, they were huge! I used to take 1 per meal, then it got to 2. When I first stated the 25k I was taking up to 6 per meal, now just 1 on the whole as I have an enforced small appetite, it definitely is not an exact science. I have never had an elastase test. Just keep experimenting until you find what suits you. Good luck.

 

[mikeyB]

It's always tricky taking Creon with a functionless or absent pancreas.

The best way to take Creon is halfway through the meal. The dose depends to an extent on the amount of fat in the meal if you want to avoid the unflushable bowel motions. I've only recently got the skill just right. To hellp that, I have a supply of 10,000 capsules plus a supplly of 50,000 capsules. The smaller dose helps with snacks - or even hypo corrections, and salads. I expect to take several doses throughout Christmas Day, same as a functioning pancreas. (Much the same with Insulin!). The one big thing to remember is jelly babies are food, and need a dose of Creon to work at correcting a hypo.

You'll know when you take too much Creon - you'll either get constipated, or the unused Creon will pass straight through, and on the way out it'll have a go at digesting your anus, giving you the 'hot' feeling you get after a Chicken Vindaloo.

And the correct dose is the one that works at you getting normal bowel motions. It's as simple as that. Doctors generally don't understand that, so always supply Creon with instructions like "two to be taken with each meal". Which is why I order prescriptions more frequently than any other drug I take. (Not that Creon is a drug)

 

[Pumper_Sue]

2nd F Elastase test reveals drop from 44 to 7 in 4 weeks (not happy). HbA1c is fine which is a relief. Consultant expedited urgent CT scan so this might reveal more, hopefully not but still waiting for results. F had PC so heredity link.
3rd week in on Creon and wondering after eating (small meals, reasonably healthy nutrition, lunch/evening) whether others experience urgent need to visit the bathroom which resolves with a lie down and hot water bottle. I’m on 25000 dose 1 snacks 2 main meals. Maybe dose adjustment required? Thanks for reading my post.

Everyone is different, so you do need to experiment. The fattier the meal the more creon you will need. I use between 3 and 4 2500 capsules for meals and 10000 for a snack.
Do make sure you take the Creon correctly as in one mouthful of food, capsules and then a drink of water or squash. Even doing this I still had tummy issues so went completely gluten free and that cleared up all the problems.

 

[Proud to be erratic]

Interesting @mikeyB, thank you for the further insight.

It's always tricky taking Creon with a functionless or absent pancreas.

The best way to take Creon is halfway through the meal.

I was told to start my Creon after the 1st mouthful and then try to spread the capsules evenly through the meal, but no point taking 'missed or forgotten' capsules after the meal.

The dose depends to an extent on the amount of fat in the meal if you want to avoid the unflushable bowel motions. I've only recently got the skill just right. To hellp that, I have a supply of 10,000 capsules plus a supplly of 50,000 capsules.

The idea of 10k capsules for small snacks is great, I must ask my GP to adjust my script.
Can one still get 50k capsules? There used to be 40k capsules, but these seem to have been discontinued around here.

The smaller dose helps with snacks - or even hypo corrections, and salads. I expect to take several doses throughout Christmas Day, same as a functioning pancreas. (Much the same with Insulin!). The one big thing to remember is jelly babies are food, and need a dose of Creon to work at correcting a hypo.

I didn't know that about JBs. Indeed it was my understanding that by keeping the JBs in one's mouth and letting them dissolve there the small amount of digestive enzymes released with saliva seems to be sufficient for JBs to be effective.
I've never taken Creon with my fast acting hypo treatments, which seem to work well enough. I vaguely recall being told JBs don't need Creon, by the HPB dietician after my first surgery. But it's easy to misremember these details!

You'll know when you take too much Creon - you'll either get constipated, or the unused Creon will pass straight through, and on the way out it'll have a go at digesting your anus, giving you the 'hot' feeling you get after a Chicken Vindaloo.

This is interesting and sounds credible.I do sometimes get that hot feeling!

I was told in Feb 20 that very new research then, had established that if a capsule should open or disintegrate before reaching one's stomach it was possible to get bad 'burns' within one's oesophagus from the corrosive nature of the granules inside a capsule, which one's stomach can more readily manage. This research seemed to be in contradiction of the advice on the Creon leaflet that if one was struggling to swallow a capsule then open it, mix it with something like pureed apple and consume the Creon that way. The dietician specifically advised me against doing that. The granules certainly taste horrible and seem to persist, even slightly get regurgitated; only done that once!

And the correct dose is the one that works at you getting normal bowel motions. It's as simple as that. Doctors generally don't understand that, so always supply Creon with instructions like "two to be taken with each meal". Which is why I order prescriptions more frequently than any other drug I take. (Not that Creon is a drug)

 

[mikeyB]

Apologies for the 50k dose. It used to be that, but now the max is 25k, so still take 2 instead of one torpedo ( they were rather big!). I’m making chilli tonight so that’s a 75k job. Unless I need home made ice cream after, which will put it up to100k. To say nothing about the insulin needed

 

[Yammy190]

Thank you all for your replies. I’m learning a lot here and I am extremely grateful to you all. One thing I didn’t realise was the link between Creon motility and output. (Output = poo) So just to let you know my life is complicated further by my colostomy. I had major bowel surgery 2018 for stage 2 cancer. So keeping my bowels moving is a major preoccupation because a blockage can cause extreme consequences which would need a visit to the hospital. My stoma is literally the inside of my intestine something I have to take great care of and it lives in a bag . I irrigate so that has given me huge control over my appendage. 4 years on and I’m in control pretty much consistently. So far I haven’t spoken to my consultant other than one virtual telephone conversation 3 months ago. He knows of my issues and we were suppose to meet in December but his diary is fully booked. Anyway a meeting will come soon I hope. My GP is aware of the situation. It’s crucial that I maintain control so I totally get the non functioning pancreas and enzyme situation but I need to learn more. At the moment I can only handle small portions because I feel full quickly. I’ve been taking one capsule ( I’ve been taking Creon for 3 weeks tomorrow) but I raise that to two for higher fat content.Trial and error plays a huge part in living with a stoma so having a dodgy pancreas as well makes things very difficult. In addition I now have another dilemma with Creon and avoiding a blockage or a persistent poonamis. I’m grateful and listening. Again thanks for reading my post.

 

[martindt1606]

Hello @Yammy190 ,
Since my total panc'y in Feb 2020 I had become an expert in "urgent (explosive) trips to the bathroom", some close calls and some "too late calls". The latter were often more easily 'cleaned' by a shower rather than wiping! Sorry if that is TMI.

I take Creon in what my gastroenterolgist described as industrial quantities, around 30+ 25k capsules daily. But I have no panc'y so no real digestive enzymes; just the minor ones that start digestion once food is in your mouth; they deal well with pure glucose, eg jelly babies for hypo response, but it seems not much more. They mainly send a message to one's pancy telling the panc'y to wake-up, get ready - food is coming. Both my Gastro Consultant, based in Bucks and my original HPB Team in Oxford, along with their dietician, were clear in saying you can't overdose on Creon; what is not used passes through harmlessly.

I take 1 Creon capsule, sometimes 2, even with a milky coffee. And, while there is no relationship between carbs and Creon I find it simplest to take one capsule for every 10 gms of carbs - which gives me a workable guide for how much Creon for any one meal; otherwise I have to scrutinise any meal for fat content first, then dairy and ... well its a faff before making what is still a subjective decision! If it's a zero carb cheese omelette, then I'll take 3 capsules for the fat and protein; seems to work; so I'm not dogmatic about Creon just for carb content.

I used to habitually have to scrutinise my stools, checking they were the appropriate colour as well as good consistency - increasing my Creon to improve colour; the NHS Web site can provide guidance on this (I was given a useful leaflet). The Creon didn't do so much for consistency. It took 26 months for the Gastro to do a test, that he needed higher approval for and then provide an antibiotic, which also needed higher approval; all that after I'd pestered him to check for malabsorption - which it was. He was determined to rule out everything else before exploring that option - at my expense (or so it felt). Of course lock down didn't help. My "urgent trips" have become very rare, since that antibiotic.

My HbA1c is OK for my circumstances. After my malabsorption dilemma was resolved, I had to adjust my once daily basal dose and my bolus ratios. Reading your other posts I don't think you are on insulin, so my insulin doses are less relevant to you, but do show a "cause and effect" correlation in principle.

Overall, I found my optimum Creon intake by trial and error. I think dose adjustment is very useful and necessary. I never had an elastase test, which in hindsight I'm surprised about. Hope this helps in some way.

not quite industrial - minimum 16 per meal average 56 Creon per day. Tomorrow expect this to be much higher.......

 

[Nikki81]

Hello @Yammy190 ,
Since my total panc'y in Feb 2020 I had become an expert in "urgent (explosive) trips to the bathroom", some close calls and some "too late calls". The latter were often more easily 'cleaned' by a shower rather than wiping! Sorry if that is TMI.

I take Creon in what my gastroenterolgist described as industrial quantities, around 30+ 25k capsules daily. But I have no panc'y so no real digestive enzymes; just the minor ones that start digestion once food is in your mouth; they deal well with pure glucose, eg jelly babies for hypo response, but it seems not much more. They mainly send a message to one's pancy telling the panc'y to wake-up, get ready - food is coming. Both my Gastro Consultant, based in Bucks and my original HPB Team in Oxford, along with their dietician, were clear in saying you can't overdose on Creon; what is not used passes through harmlessly.

I take 1 Creon capsule, sometimes 2, even with a milky coffee. And, while there is no relationship between carbs and Creon I find it simplest to take one capsule for every 10 gms of carbs - which gives me a workable guide for how much Creon for any one meal; otherwise I have to scrutinise any meal for fat content first, then dairy and ... well its a faff before making what is still a subjective decision! If it's a zero carb cheese omelette, then I'll take 3 capsules for the fat and protein; seems to work; so I'm not dogmatic about Creon just for carb content.

I used to habitually have to scrutinise my stools, checking they were the appropriate colour as well as good consistency - increasing my Creon to improve colour; the NHS Web site can provide guidance on this (I was given a useful leaflet). The Creon didn't do so much for consistency. It took 26 months for the Gastro to do a test, that he needed higher approval for and then provide an antibiotic, which also needed higher approval; all that after I'd pestered him to check for malabsorption - which it was. He was determined to rule out everything else before exploring that option - at my expense (or so it felt). Of course lock down didn't help. My "urgent trips" have become very rare, since that antibiotic.

My HbA1c is OK for my circumstances. After my malabsorption dilemma was resolved, I had to adjust my once daily basal dose and my bolus ratios. Reading your other posts I don't think you are on insulin, so my insulin doses are less relevant to you, but do show a "cause and effect" correlation in principle.

Overall, I found my optimum Creon intake by trial and error. I think dose adjustment is very useful and necessary. I never had an elastase test, which in hindsight I'm surprised about. Hope this helps in some way.

Hi @Proud to be erratic

Thank you so much for sharing.

You mentioned having a test done and having antibiotics for malabsorption. Can I ask what test your gastro recommended and what antibiotic was prescribed? What issues did you notice in relation to malabsorption. Any info would be much appreciated.

I’m an insulin dependent diabetic and I’ve recently started Creon 5 months ago. It was working well for some time but it seems to be not as effective anymore despite doubling my dose. I’m concerned something else is at play but my gastro keeps brushing it off.

 

[Nikki81]

@Proud to be erratic

Would really appreciate any information on your experience. I’m only 45 kg but taking 75k Creon with meals and 60k with snacks none of which have much fat. Less that 40g per day.

 

[Pumper_Sue]

I’m an insulin dependent diabetic and I’ve recently started Creon 5 months ago. It was working well for some time but it seems to be not as effective anymore despite doubling my dose. I’m concerned something else is at play but my gastro keeps brushing it off.

Have you had a coeliac test done?
I take 4 x 25000 each meal and extra if very fatty. Amounts for snacks very just depends what the snack is really.

 

[Nikki81]

Have you had a coeliac test done?
I take 4 x 25000 each meal and extra if very fatty. Amounts for snacks very just depends what the snack is really.

@Pumper_Sue

Yes I have. Coeliac is negative. I’m 45kg in weight and eating less than 40g fat per day.
I take 75k Creon with main meals and 60k for snacks. Snacks are half a meal replacement and a couple of smallish pancakes. Total Creon about 400k per day which I feel is very high.

 

[Pumper_Sue]

@Pumper_Sue

Yes I have. Coeliac is negative. I’m 45kg in weight and eating less than 40g fat per day.
I take 75k Creon with main meals and 60k for snacks. Snacks are half a meal replacement and a couple of smallish pancakes. Total Creon about 400k per day which I feel is very high.

Basically your body needs what it needs, this applies to insulin as well 🙂
How did they test for Coeliac blood test or endoscopy?

 

[Nikki81]

Basically your body needs what it needs, this applies to insulin as well 🙂
How did they test for Coeliac blood test or endoscopy?

@Pumper_Sue

I’ve had an endoscopy done and blood test.

 

[Pumper_Sue]

@Pumper_Sue

I’ve had an endoscopy done and blood test.

Ok so that's def ruled Coeliac out. 🙂
Other option is to increase your creon and see if that helps.

 

[Proud to be erratic]

Hi @Proud to be erratic

Thank you so much for sharing.

You mentioned having a test done and having antibiotics for malabsorption. Can I ask what test your gastro recommended and what antibiotic was prescribed? What issues did you notice in relation to malabsorption. Any info would be much appreciated.

Hi @Nikki81, happy to provide details about the antibiotic. I'm away from home currently and can't find a record on my phone of the details; but I'm pretty sure I've still got the packaging at home. So will do a search later on Wednesday.

I’m an insulin dependent diabetic and I’ve recently started Creon 5 months ago. It was working well for some time but it seems to be not as effective anymore despite doubling my dose. I’m concerned something else is at play but my gastro keeps brushing it off.

Just out of curiosity, how did you end up with a diagnosis of T3c and how long have you been a member of this "select" tiny club? How long have you been insulin dependent? There are some T3cs who don't yet need insulin.

If this is all very new to you, then it might help (very slightly) to know (and so manage your expectations) that a fair amount of trial and learning is going to be essential to help your particular circumstances. This is very true for diabetes in isolation and I think also very true for one's gastro circumstances. So somehow you will need to find some stability with one ailment in order to learn how to manage the other problem. I found this pretty challenging after my Whipple's procedure: Diabetes, recovery from major surgery, gastro probs, loss of bladder control, chemo after effects; and all those combined made me very wary of even going into the garden, never mind further!!

Yet I somehow wrestled and got on top of these challenges and now live a fairly normal life; just sometimes things take longer to weave around. I'm 73, retired and got that time. I would be seriously frustrated by these things if I were back in my 40s and I think I understand your search for more guidance. Do keep asking questions. I'll get back to you tomorrow about the malabsorption antibiotic.

 

[martindt1606]

@Nikki81 I had my Total Pancreatectomy in 2010 (13 year anniversary in April). I do take INDUSTRIAL levels of CREON, over the years it has slowly increased to the stage that I now take 14 * 250000 capsules with every meal and then increase that dependent on if the meal has additional fat content eg Turkey Mayo Sandwich = 14, Cheese Sandwich =18. If I go mad and have a pizza or fish and chips I have started taking 20. NOTE CREON SHOULD BE VARIED FOR FAT CONTENT NOT CARBOHYDRATE. You dont say how you take the Creon but you should take before and during the meal and always with cold water (definately not tea / coffee or fruit juice). I still have days where the toilet is the place to be especially as food "tollerance" seems to change over time. For example last year Pasta started to cause extreme movements. I had a coeliac test but everything was normal and things seem to have quietened down again. Daily Creon usage around 60 to 70 25000 capsules. Meals do take a long time to eat. Have you tried a Creon alternative? I had a spell using Nutrizym22 when there was a Creon shortage. They worked well but I switched back as I needed to take 10% more capsules (the lipase mix is slightly different). If you ever have any questions give me a shout.

@Proud to be erratic I've recently talked to a couple of Total Pancreatectomy insulin dependent diabetics and they were both advised post operation that they were Type 3c. I have always attended Type 1 Clinic and live my life following DAFNE rules - eat anything and Bolus / CREON accordingly. They were both very recently out of hospital and like me in 2010 had no idea about diabetes / insulin dependency. I don't know how the clinics are supporting them going forward, but i have told them that they need to push for DAFNE type education. Not sure i would have made 13 years without the Type 1 structure in place (and @Northerner early support).

 

[Proud to be erratic]

@Nikki81 I had my Total Pancreatectomy in 2010 (13 year anniversary in April). I do take INDUSTRIAL levels of CREON, over the years it has slowly increased to the stage that I now take 14 * 250000 capsules with every meal and then increase that dependent on if the meal has additional fat content eg Turkey Mayo Sandwich = 14, Cheese Sandwich =18. If I go mad and have a pizza or fish and chips I have started taking 20. NOTE CREON SHOULD BE VARIED FOR FAT CONTENT NOT CARBOHYDRATE.

Yes @martindt1606, thank you for making that clear. I also increase my Creon for meals with higher fat content; I just use the carb content as a start point - bigger meal, lots of carbs = more Creon. Snack = less. Currently my Creon doses have reduced very slightly, from 100 every 3 days to almost 100 every 4 days of the 25k capsules. But I don't accurately keep track of my consumption; I'm just aware that my 10 x 100 packs of Creon had started to stockpile, so periodically omit Creon from my repeat prescription.

You dont say how you take the Creon but you should take before and during the meal and always with cold water (definately not tea / coffee or fruit juice).

I know, always, when I've forgotten my Creon. But I do use water, low sugar pop, and coffee to wash them down. But never very hot coffee, which I understand dissolves the capsule prematurely and damages the contents.
Elsewhere in this thread @mikeyB said Creon was even needed for Jelly Babies. I've since been consciously monitoring this and have never found my JBs or other fruity high carb hypo response snacks needing me to take Creon. That is a relief, because when dipping low its good to have least fuss while managing a pending hypo; it's bad enough rummaging for a rapid treatment, without having to find Creon as well.

I still have days where the toilet is the place to be especially as food "tollerance" seems to change over time.

I too still have such days, some more controllable than others. I haven't decided if my Creon is not sufficient - or this is just "one of those things". The reality is I usually accept that morning's outcome and move on, not really wanting to think more carefully about events! Not sure if this is apathy or pragmatism?

For example last year Pasta started to cause extreme movements. I had a coeliac test but everything was normal and things seem to have quietened down again. Daily Creon usage around 60 to 70 25000 capsules. Meals do take a long time to eat. Have you tried a Creon alternative? I had a spell using Nutrizym22 when there was a Creon shortage. They worked well but I switched back as I needed to take 10% more capsules (the lipase mix is slightly different). If you ever have any questions give me a shout.

@Proud to be erratic I've recently talked to a couple of Total Pancreatectomy insulin dependent diabetics and they were both advised post operation that they were Type 3c.

I was formally discharged, 3 yrs ago, as T1 from an HPB dep't in a University hospital that specialises in diabetes. Naturally I took that at face value - initially. I don't begrudge that diagnosis as such - better that way, than as T2, for follow on treatment. But that experience has brought home to me how few medical professionals even have the sense to realise that a T3c with no panc'y needs a more unique treatment regime than a T1 with allow those unusual circumstances - until its explained to them.

I had an unsatisfactory diabetes experience immediately after emergency surgery for a blocked colon - luckily I was alert enough as I came out of the anaesthetic to stop a nurse, following the Endo dep'ts written protocol, from giving me insulin as I was rapidly dropping below 4.0. The nurse and ward Dr told me to trust them - it was written down! I refused to let them proceed, went back to sleep and woke later to find someone had made a manuscript correction to the protocol; satisfactory result - for me - but did anyone raise this with the Endo Dept? (Who never came near me during my 3 week stay).

I have always attended Type 1 Clinic and live my life following DAFNE rules - eat anything and Bolus / CREON accordingly. They were both very recently out of hospital and like me in 2010 had no idea about diabetes / insulin dependency.

Nor me.

I don't know how the clinics are supporting them going forward, but i have told them that they need to push for DAFNE type education. Not sure i would have made 13 years without the Type 1 structure in place (and @Northerner early support).

Agreed about the T1 structure to shield me. I've recently done a DAFNE course I intend to start a separate thread about that experience; there's a lot of good but the syllabus is now out of date. Anyway, this needs a different thread.