Pancreatic Insufficiency Creon tips please.

[nonethewiser]

Find just as same as insulin doses, there's no such thing as set dose of Creon & we all need whatever we need to get best results from supplement. Like others find higher fat/ protein meals need more Creon that usual fare.

 

[Pumper_Sue]

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 think you need to read the patient leaflet enclosed with the Creon which explains how to take the capsuals.
Perhaps the method you are using is why you are having to use so much?

 

[martindt1606]

I think you need to read the patient leaflet enclosed with the Creon which explains how to take the capsuals.
Perhaps the method you are using is why you are having to use so much?

Maybe Maybe Not....I take them in line with advise from 4 different consultants at 2 cancer centres, in line with every dieticians advise i have talked to, in line with the Pancreatic Dietician, in line with Neuronedocrine Cancer Guildelines..... and 20 years of experiencing what they do to my body, my digestive system, and stools (regularity, solidity, colour....)

 

[martindt1606]

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.

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 never take CREON with jelly babies when treating a hypo....we have to set priorities ans as you have said I have never had to dash to the loo because i didn't take Creon. Personally i also find that i have no after effects if i do not take Creon with the follow up longer lasting carbs either.

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?

With the complexity of replacing the workings of the pancreas we have to be pragmatic. If there is something obvious then we can take action but day to day things do change. For example i have stopped eating roast pork as I picked up (eventually) that the following morning was always a mess....

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 was lucky as i was transferred to my local hospital post TP. The diabetic consultant and nurses were brilliant. Never come across anyone like me and as a result they were happy to talk to me whenever it was needed. We spent many hours getting the carb ratios correct, we tried both levermir and lanctus once and twice a day alongside NovoRapid and when we couldn't get either working they found a special budget they could use and got me on to a pump. That was 9 years ago - so very lucky.

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).

Nor me.

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.

 

[Piglet]

Thank you so much everyone who has contributed to this thread. I too am on Creon and was given the basic dose information. I stopped taking it for a while but ended up in hospital with a very low BP 47/31 so I am now back on it. I will be increasing my dosages as I seem to yoyo from constipated to explosive on a 2 week cycle.

You have all made me laugh too with your comments and terminology so please keep it up.
Piglet

 

[Nikki81]

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.

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.

@Proud to be erratic

Thank you so much for replying.

I’m 41 years old diagnosed 20 years ago as having calcification of pancreas. I’ve been on insulin for 20 years. a few months ago diagnosed with pancreatic insufficiency. I lost weight and was 40kg. I was put on a PPI and Creon. I was on a low dose for 3 months 35k meals 25k snacks and was going well. I gained 5 kg but at the start of the year something changed.

I started to have loose stools and my weight started to drop. I increased Creon to 50k and it was better then after a few days worse again. Now I’m up to 75k with meals and 60k with snacks totaling 400k a day. It was better and now starting to deteriorate again. I have a reflux issue but they didn’t find any acid in the endoscopy. I wonder if the reflux is actually irritation caused by bacterial overgrowth (SIBO). Taking a PPI makes it worse and I’ve been on it for 8 months. I’ve also suddenly developed food intolerances to dairy (mucus in throat) and can’t seem to tolerate raw fruit or veg.

My dietician says something is not right - the max dose should be 10k per kg per day so I’m not far off that at max of 450k. She said I’m barely eating any fat and having very small meals to warrant such high doses of Creon. In fact I’ve cut back on my food. She feels it could be bacterial overgrowth. My gastro doesn’t seem to think so. I’m in Australia and the only enzymes available here is Creon.

Hence why when I saw your post I wondered if you could share how you discovered the malabsorption issue.

Did you have any symptoms or do a breath test to uncover it? They usually prescribe rifaximin for it.

 

[Nikki81]

@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).

@martindt1606

Thanks for replying. I take Creon at start of meal with water. Spreading them out didn’t seem to work as well for me. I have 3x 25000 with about 6g fat.

 

[Pumper_Sue]

Thanks for replying. I take Creon at start of meal with water. Spreading them out didn’t seem to work as well for me. I have 3x 25000 with about 6g fat.

Again I would say read patient leaflet on how to take the Creon.
The creon does not start to work until it has something to work on same as your own enzymes would not start working until they had food to start digesting. It's simple logic really.

Obviously the manufactures know what they are saying they produced the stuff in the first place.

 

[nonethewiser]

@martindt1606

Thanks for replying. I take Creon at start of meal with water. Spreading them out didn’t seem to work as well for me. I have 3x 25000 with about 6g fat.

There's retired gp on here who is Creon userer, he once said to take few mouth fulls of food before taking capsules, consultant never mentioned this when starting on supplement, found it was great advice & had much better results since.

Example, today for lunch had sandwich with 2 hard build eggs, ate 1 egg then took Creon then ate other egg then sandwich.

 

[Proud to be erratic]

@Proud to be erratic

Thank you so much for replying.

You are welcome.

I’m 41 years old diagnosed 20 years ago as having calcification of pancreas. I’ve been on insulin for 20 years. a few months ago diagnosed with pancreatic insufficiency.

Because my start point 3 yrs ago was from a total panc'y, I have only a superficial understanding of the complexity and consequences of pancreatitis.

I lost weight and was 40kg. I was put on a PPI and Creon. I was on a low dose for 3 months 35k meals 25k snacks and was going well. I gained 5 kg but at the start of the year something changed.

My weight dropped significantly post op, then continued to drop during 2020. I had nutritional drinks but they didn't do much. I suspect the core problem was that too little was staying inside me.

I started to have loose stools and my weight started to drop. I increased Creon to 50k and it was better then after a few days worse again. Now I’m up to 75k with meals and 60k with snacks totaling 400k a day. It was better and now starting to deteriorate again. I have a reflux issue but they didn’t find any acid in the endoscopy. I wonder if the reflux is actually irritation caused by bacterial overgrowth (SIBO). Taking a PPI makes it worse and I’ve been on it for 8 months.

I've been on 2x 20mg Omezaprole since my op. I have no difficulties with that.

I’ve also suddenly developed food intolerances to dairy (mucus in throat) and can’t seem to tolerate raw fruit or veg.

My dietician says something is not right - the max dose should be 10k per kg per day so I’m not far off that at max of 450k.

I'm not aware that there is a max dose for Creon. I've read the leaflet and looked at Mylan's further info for Creon on line and can't find anything to that egfect. I wonder if its a guide rather than a definitive limit. My understanding is "you need what you need".

I weigh 70kg so am constantly a bit above a limit of 28 x 25k capsules.

She said I’m barely eating any fat and having very small meals to warrant such high doses of Creon.

My dietician encouraged me to eat as much fat as I wanted. I have very good cholesterol levels and I love oils, butter, cream etc. Since I did that I regained some weight (and enjoy my food!).

In fact I’ve cut back on my food. She feels it could be bacterial overgrowth. My gastro doesn’t seem to think so. I’m in Australia and the only enzymes available here is Creon.

Hence why when I saw your post I wondered if you could share how you discovered the malabsorption issue.

I reached out to a dietician from the Macmillan cancer organisation, who had kindly been helping me during my chemo phase; since I felt my "official / nominated" dietician was useless. It was the Macmillan lady who did some research and suggested malabsorption could be the cause of both my erratic diabetes management as well as my poor bowel control.

Armed with that "thought" I mentioned this during an HPB Surgical follow-up and that NHS Consultant offered to refer me to a Gastroenterologist who might be able to help. This was pushing boundaries - since I live in the county of Bucks, my surgery was done in Oxford under an 'outside' NHS Trust and the referral was to a gastro in Bucks. I was sent a copy of the referral letter, I found his secretary's email and wrote directly to him a comprehensive explanation of my long-standing gastro background, my current problems and cheekily asked if it could be malabsorption. The email was sent midday on a Friday and an hour later to my complete surprise he phoned me, quizzed me for an hour, arranged an appointment for a few days later and his investigations then properly started. In between his phone call and our meeting he'd organised a blood test to rule out Coeliac's disease. I subsequently had a colonoscopy and some biopsies were taken, to clarify the status of my Ulcerative Colitis (which I'd had most of my life, but was only diagnosed and formally treated in 2003 in my mid fifties); dormant, as I suspected - my post-op bowel probs were different to my UC symptoms.

Micronutrient screens for selenium, zinc and vitamins A and E were done - all normal. Then Rifaximin was prescribed - against an assumption that malabsorption could be the cause. And so it proved - a great call, after a thorough process of exploration.

Did you have any symptoms or do a breath test to uncover it? They usually prescribe rifaximin for it.

My symptoms were unpleasant, urgent, messy, offensive stools, along with many 'accidents'. No breath test. Plenty of btreath holding in the bathroom?

Since the rifaximin my symptoms hugely reduced and the consequent carb counting started to make sense, finally allowing me to gain some confidence and start to refine insulin ratios.

 

[Nikki81]

You are welcome.

Thank you so much for your very thoughtful and considerate reply. I really appreciate it.

Because my start point 3 yrs ago was from a total panc'y, I have only a superficial understanding of the complexity and consequences of pancreatitis.

My weight dropped significantly post op, then continued to drop during 2020. I had nutritional drinks but they didn't do much. I suspect the core problem was that too little was staying inside me.

I've been on 2x 20mg Omezaprole since my op. I have no difficulties with that.

I'm not aware that there is a max dose for Creon. I've read the leaflet and looked at Mylan's further info for Creon on line and can't find anything to that egfect. I wonder if it’s a guide rather than a definitive limit. My understanding is "you need what you need".

I’ve heard this too. Found this guidance in the safety information section of the dosing guide - https://www.creonhcp.com/dosing-calculator

I weigh 70kg so am constantly a bit above a limit of 28 x 25k capsules.

My dietician encouraged me to eat as much fat as I wanted. I have very good cholesterol levels and I love oils, butter, cream etc. Since I did that I regained some weight (and enjoy my food!).

I reached out to a dietician from the Macmillan cancer organisation, who had kindly been helping me during my chemo phase; since I felt my "official / nominated" dietician was useless. It was the Macmillan lady who did some research and suggested malabsorption could be the cause of both my erratic diabetes management as well as my poor bowel control.

By erratic diabetes management do you mean high sugars and lows as well?

I am having very high sugars since increasing my Creon in the past week but my gastro seems to think I’m absorbing more. She is ok for me to try Rifaximin for 3 weeks.

My dietician seems to think it’s malabsorption. My fecal calprotectin is elevated. Creon was working well on smaller doses before. My sugars are erratic - really high and then very low all of a sudden. I had a 5 day course of rifaximin in September but I assume that wasn’t enough.

Armed with that "thought" I mentioned this during an HPB Surgical follow-up and that NHS Consultant offered to refer me to a Gastroenterologist who might be able to help. This was pushing boundaries - since I live in the county of Bucks, my surgery was done in Oxford under an 'outside' NHS Trust and the referral was to a gastro in Bucks. I was sent a copy of the referral letter, I found his secretary's email and wrote directly to him a comprehensive explanation of my long-standing gastro background, my current problems and cheekily asked if it could be malabsorption. The email was sent midday on a Friday and an hour later to my complete surprise he phoned me, quizzed me for an hour, arranged an appointment for a few days later and his investigations then properly started. In between his phone call and our meeting he'd organised a blood test to rule out Coeliac's disease. I subsequently had a colonoscopy and some biopsies were taken, to clarify the status of my Ulcerative Colitis (which I'd had most of my life, but was only diagnosed and formally treated in 2003 in my mid fifties); dormant, as I suspected - my post-op bowel probs were different to my UC symptoms.

Micronutrient screens for selenium, zinc and vitamins A and E were done - all normal. Then Rifaximin was prescribed - against an assumption that malabsorption could be the cause. And so it proved - a great call, after a thorough process of exploration.

My symptoms were unpleasant, urgent, messy, offensive stools, along with many 'accidents'. No breath test. Plenty of btreath holding in the bathroom?

Since the rifaximin my symptoms hugely reduced and the consequent carb counting started to make sense, finally allowing me to gain some confidence and start to refine insulin ratios.

How long were you on rifaximin for? A week or longer?

You are welcome.

Because my start point 3 yrs ago was from a total panc'y, I have only a superficial understanding of the complexity and consequences of pancreatitis.

My weight dropped significantly post op, then continued to drop during 2020. I had nutritional drinks but they didn't do much. I suspect the core problem was that too little was staying inside me.

I've been on 2x 20mg Omezaprole since my op. I have no difficulties with that.

I'm not aware that there is a max dose for Creon. I've read the leaflet and looked at Mylan's further info for Creon on line and can't find anything to that egfect. I wonder if its a guide rather than a definitive limit. My understanding is "you need what you need".

I weigh 70kg so am constantly a bit above a limit of 28 x 25k capsules.

My dietician encouraged me to eat as much fat as I wanted. I have very good cholesterol levels and I love oils, butter, cream etc. Since I did that I regained some weight (and enjoy my food!).

I reached out to a dietician from the Macmillan cancer organisation, who had kindly been helping me during my chemo phase; since I felt my "official / nominated" dietician was useless. It was the Macmillan lady who did some research and suggested malabsorption could be the cause of both my erratic diabetes management as well as my poor bowel control.

Armed with that "thought" I mentioned this during an HPB Surgical follow-up and that NHS Consultant offered to refer me to a Gastroenterologist who might be able to help. This was pushing boundaries - since I live in the county of Bucks, my surgery was done in Oxford under an 'outside' NHS Trust and the referral was to a gastro in Bucks. I was sent a copy of the referral letter, I found his secretary's email and wrote directly to him a comprehensive explanation of my long-standing gastro background, my current problems and cheekily asked if it could be malabsorption. The email was sent midday on a Friday and an hour later to my complete surprise he phoned me, quizzed me for an hour, arranged an appointment for a few days later and his investigations then properly started. In between his phone call and our meeting he'd organised a blood test to rule out Coeliac's disease. I subsequently had a colonoscopy and some biopsies were taken, to clarify the status of my Ulcerative Colitis (which I'd had most of my life, but was only diagnosed and formally treated in 2003 in my mid fifties); dormant, as I suspected - my post-op bowel probs were different to my UC symptoms.

Micronutrient screens for selenium, zinc and vitamins A and E were done - all normal. Then Rifaximin was prescribed - against an assumption that malabsorption could be the cause. And so it proved - a great call, after a thorough process of exploration.

My symptoms were unpleasant, urgent, messy, offensive stools, along with many 'accidents'. No breath test. Plenty of btreath holding in the bathroom?

Since the rifaximin my symptoms hugely reduced and the consequent carb counting started to make sense, finally allowing me to gain some confidence and start to refine insulin ratios.

 

[Nikki81]

Again I would say read patient leaflet on how to take the Creon.
The creon does not start to work until it has something to work on same as your own enzymes would not start working until they had food to start digesting. It's simple logic really.

Obviously the manufactures know what they are saying they produced the stuff in the first place.

I usually take a couple of mouthfuls then a Creon then a few more than Creon but I don’t spread the Creon too far into the meal. I used to spread it out further but My dietician told me to take it upfront if I eat my meal in 15 mins. I might spread it out and give it a try again. Too nervous to try anything new.

 

[Pumper_Sue]

I usually take a couple of mouthfuls then a Creon then a few more than Creon but I don’t spread the Creon too far into the meal. I used to spread it out further but My dietician told me to take it upfront if I eat my meal in 15 mins. I might spread it out and give it a try again. Too nervous to try anything new.

I just take a mouthful of food then all of the Creon plus some water and carry on eating. This has never caused a problem.

 

[martindt1606]

I usually take a couple of mouthfuls then a Creon then a few more than Creon but I don’t spread the Creon too far into the meal. I used to spread it out further but My dietician told me to take it upfront if I eat my meal in 15 mins. I might spread it out and give it a try again. Too nervous to try anything new.

Nikki81 - why did you have your TP? If it was due to Neuroendocrine Cancer, there is a Pancreatic Natter (Zoom meeting) on Tuesday 21st where a Pancreatic Surgeon is the guest. Format, I believe, is question and answer.