Post Whipple Operation - Creon

My mother had the operation in November 2014 - she underwent a 14 hour surgery.

This has now left her having to use Enzymes (Creon). She's struggling with the Creon.

Does anyone have any experience of using Creon? How do you manage? What doses do you take? My mother is having to use 3 to 4 x 40k for each meal and still not helping her digest the food eg it still goes through her.

22 Replies

  • You do not say why your Mum is struggling with the creon? - I've been taking it since my whipple over 3 years ago without any problems. I take 2 capsules before eating but have been told they are not at all harmful and one can take as many as needed. If your Mum is having digestion problems then the best thing is peppermint tea after a meal - hope this helps. Linda.

  • She's struggling because she's having to take 4 x 40k mg per meal and 3 x 25k mg per snack - and still all food goes through her, about 20mins later or during a meal - she's having diarrhoea - the meal literally goes through. This means she's not absorbing any food, nutrition, vitamins and is becoming malnourished.

    We have tried days with 6 x 40k mg per meal and it still isn't enough. With snacks and meals she's having about 18/20 x 40k mg and 20 x 25k mg - all in a day. :(

  • Have you seen the dietician? - it's important to eat the right she diabetic now also? I am!! - I've found rice is very good. It really does get better......although you should consult with the oncologist your Mum saw if you can't get an earlier appointment with the GP - hope this is a little helpful...

  • Seen the dietician every few weeks and keeps upping the dose of creon. Mum diagnosed in June 2010 with cancer, doctors refused to send her to an Oncologist - it was Marie Curie (hospice) in June 2014 who intervened and also gave up with the GP - went directly to an Oncologist - mum had that appointment in July 2014.

    August 2014 had scans etc as in between June 2010 and July 2014 the cancer had grown and a stent was put in her duodenum. September the Oncologist referred her to a Whipple surgeon - November she had the operation.

    Anyone would think we live in the middle of nowhere, we live in Cardiff (ummm apparently the Capital City of Wales - NOT).

    The dietician has now referred mum to another consultant at the main hospital she's not seen anyone now for the last four weeks (on a waiting list). Grr comes to mind.

    Her next appointment with the Oncologist is 23rd July 2015 - we cannot get anything earlier. I'm at my wits end as to what to do.

  • I would go to A & E - not sure what the hospitals are like in Cardiff - but perhaps it will be quicker - she can't wait until July! - do sympathise with you........perhaps someone else on this site has experience of this? - come on folks - this lady needs help! thank can also try contacting the admin on here who are helpful..

  • You are wonderful (hugs sent your way). Doh we waited 6 hours for an ambulance and sat outside in the ambulance for two hours and once inside a further 8 hours as Cardiff A&E didn't have a doctor on duty - eventually gave up and came home. That was a couple of weeks ago.

    Don't worry - think we'll just have to pay privately - have the price of a private GP local to us £160 an hour - may make things happen more quickly for us.

    Not sure who is more distressed my mother living it, and me seeing it.

    We've gone through all the paperwork given to my mother after the surgery, then the paperwork given by the dietician and everything is followed to the letter. Whoops - oh and blood tests done six weeks ago - no sign of diabetes.

    Will ring now and make an appointment with the private GP - apparently it only takes a couple of days to get an appointment - emergencies can be seen on the day. Should get in to see someone Friday.

    Thank you again for trying to assist me/us, it really is appreciated.

  • sending lots of hugs your way - perhaps the private option is best but it shouldn't have to be like that.....xx

  • Hi I have to take Creon they are an artificial enzyme and you can't overdose on them, I started off taking 2 x 40k tablets with main meals and 2 x2.5k with snacks,

    Maybe worth taking that extra one or two but speak to your oncologist first, Stick with it though coz it will get better remember your mother has had a lot of " re-plumbing" done on her digestive system which is un-natural so things will take time

  • I've copied and pasted from the other:

    She's struggling because she's having to take 4 x 40k mg per meal and 3 x 25k mg per snack - and still all food goes through her, about 20mins later or during a meal - she's having diarrhoea - the meal literally goes through. This means she's not absorbing any food, nutrition, vitamins and is becoming malnourished.

    We have tried days with 6 x 40k mg per meal and it still isn't enough. With snacks and meals she's having about 18/20 x 40k mg and 20 x 25k mg - all in a day. :(

    Presuming we'll have to up the dose to 8/10 x 40k mg per meal - when I say a meal - a meal consists of very little - just a bit of veg, one or two potatoes and a tiny amount of meat - like a child's meal.

    When we've gone out to a place to eat e.g. a carvery - larger portion 4 x 40k mg wasn't enough.

    The doctor only prescribes 100 x 40k mg and 100 x 25k mg per prescription and we've told the GP this just isn't enough she's going to need up to 30 x 40k mg per day so 100 capsules is only 3 days.

    Oh and an emergency appointment with our GP is 5 weeks.

  • I can only explain my dosage. I had a whipples in July 2103 and struggled at first with the Creon but I am now coping. As it is the amount of fat within the meal that governs your dose for that meal it does vary a lot, but I work on approx. 3gm of fat per 10,000 creon dose, I have also had to cut out my cereal breakfast as I found that liquid first thing does not suit me so I have two rounds of toast with very little butter and take 80,000. Lunch is usually a sandwich and normally I take between 100,000 - 150,000, my evening meal, again depending on the amount of fat, but I normally take 150,000 - 200,000 and frequently spread the dose throughout the meal. I take the first tablet immediately before I put the food into my mouth and take with water, as hot drinks reduce the effectiveness.

    On average I take around 450,000 worth of creons per day, there is some useful information on the cystic fibrosis site as well.

    As others have said you cannot really overdose on creons as the excessive would just pass through you.

    Hope you get some help with your appointment

  • Thank you uknomad, it just seems we are reaching 8/10 x 40k mg per meal x 3 main meals a day - then snacks.

    She's lost 3 stone in weight - 5'10" and now 8 stone - underweight now and still losing about 1lb of weight every two/three days - regardless of how much she eats.

    Appreciate you taking the time to reply.

    Have the appointment booked for tomorrow late afternoon.

  • My Husband was on creon he coped well on it seems it depends on the amount of fat that is in the meal he roughly had between 4 and 6 on each meal

  • Hi Geniex,

    Thank you for your reply.

    Having seen a private doctor, it seems he's going against some of the advice given. Mother was told to have as much sugar and fat as possible, eg minimum of 3 sugar per cuppa, full fat milk and extra milk powder.

    Then with every single meal mouth was told to have sugar, honey or similar and slap on more butter on bread etc... Porridge add sugar, honey, banana's etc...

    Over the last 12 weeks we had already clarified with the dietician - yes she must continue like this as much sugar and fat as she can tolerate. It seems the amount of sugar is now causing the amount of diarrhoea. She's not taking any sugar now. Will see how it goes. Has returned to having 4 to 6 x 40k mg per meal.

    Thanks again :)

  • I have been on Creon for years and if I eat too much fat it goes straight through me I take one Omeprazole 20mg gastro-resistant capsule in the morning whish I beleive helps the creon. Please check with the doctor first though as I am a long term diabetic and take loads of medicenes.

  • Ooo that's interesting not head of Omeprazole though my mother takes Lansoprazole which causes her to have a bad stomach - 'prior' to her having surgery. Will definitely mention this - has another appointment in a few weeks.

    Many kind thanks neilE.

  • Hi, I had my whipples in June14 and really struggled with Creon. My hospital team just kept upping the dosage but it didn't work. Finally my dietician suggested I try different brands of enzymes. First they tried Pancrex, a disgusting powder but it was marginally better than Creon, then just after Christmas they switched me to Pancrease. What a difference! Despite the pancrease being a lower strength than the creon it really helped. I started digesting my food and gaining weight. Bloating, wind and diarrhea much reduced. My consultant now advises others that creon is not always the wonder drug and that trying different brands might help. It might be worth asking about trying a different brand, I certainly have an intolerance to Creon. The problem with this whipples thing is that the post op recovery is so individual. My dietician is now also trying me on low FODMAP foods and this is also helping. Basically because my intestines are aboutb a third shorter some of the sugars I eat don't get time to be digested, despite the enzyme supplements. These sugars then pass into the lower bowel and the bacteria have a party! This causes diarrhea , wind and bloating. Unfortunately the low FODMAP diet is very limiting it has certainly helped me and I am learning to avoid certain trigger foods. I hope things get better for your Mum, it is a battle!

  • We've since paid to see a private Gastro specialist - it appears that they cut out more of her intestine than we were 'told'. Each week trying something totally different. I think you are right - a different brand may help - but giving each 'idea' one week at a time - his suggestion one week then try something different etc... It doesn't help that she's also a coeliac.

    Many many kind thanks for coming back to me on this. Will raise it with the Consultant. Thank you.

  • Hi Amyps.. How's your mum doing??? Its hard isn't it when you can't help hubby had whipple procedure to prevent cancer last September. He's been doing ok with his creon until last few weeks.. He's not suffered the same as your mum with food going through him straight away. But has had a grumbling tummy feeling nausea etc... We went to see his consultant on a follow up appointment and mentioned it to him. He's said that he doesn't think it's the creon that's the problem it could be either bacteria in the gut or acid salt malabsorption... He is going to have tests for both... Maybe ask your mum to speak to her consultant or clinical nurse for tests... I hope this helps you.... It seems if it wasn't for websites like this then you'd struggle to find help.... Let me know how she gets on...or if you need anymore help... Good luck xxx

    P's he takes on average 3 x 40,000 with main meals.. But does take Omeprazole in a morning to prevent acid reflux the dietician says it works well with the creon.... He also takes vitamin d supplement and multi vitamins... Xx

  • Wow, I'm so pleased you've sent this reply - that's very useful to know and I do appreciate your comments. Will definitely mention this to her specialists. She's lost a further 8 kg since I originally put up my question. Hugs sent your way.

    Thank you.

  • When we've looked at the symptoms for the acid salt malabsorption it says people suffer bad diarrhoea.... That hopefully why your mum is suffering... Definitely worth a question to ask.. The test is a tablet then a scan 3 hrs later... Think my hubby has the bacteria in his gut.... Let me know how you get on. Xx

  • I use a vegetable based enzyme ... It was a personal choice and it works well. But again I have nothing to compare it to. I buy it from Amazon.

  • I don't use Creon.... I use a different enzyme ... It is not pig based and I have very little digestive issues... I weigh 134 pounds. It is vegetable based.... It is a personal choice... I first got the enzyme from cancer centers of America ... I liked it. I chose to do chemo close to home... I can provide the name of the enzyme if you want...

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