Creon 25000 effect diminish over time?

[worrier]

Hi, I had a Whipples Procedure in August 2008 and was put onto Creon 25000 18 months after the operation. In recent weeks I get the impression that the Creon is not as effective as it once was. Does the effectiveness reduce over time? If so should I consult my GP for a referral? It appears that only a consultant can increase or change the prescription. I have 400 capsules per calendar month.

[whykel]

Hello 

Hope you don't mind me asking but you say you had a whipple operation 13 years ago? 

If so I just want to say wow. And I wish you continued good health x

 

I've been under investigation for 7 months I've been a complete mess.. 

I suffer from extreme health anxiety. 

I have had lots of tests. 

I have dilated pancreatic ducts. 

I'm being watched. 

Mri in January. 

Sorry for rambling 

 

[Sandyvon]

First, congratulations on your Whipple surgery in 2008. 
 

After having a Whipple in June, 2020, I’ve had to recently adjust my Creon according to my diet as I was having increased symptoms of malabsorption. I just this morning read an European research article.

 

”Most patients suffering from exocrine insufficiency after pancreatic surgery are undertreated. To improve efficacy, physicians should be more focused on treating exocrine insufficiency and educate patients to adjust the dose according to symptoms and their diet”. 
 

 

[PCUK Ellie]

Thanks for this, @Sandyvon.

 

@worrier, if you feel that your normal intake of Creon isn't as effective as it used to be, we'd definitely encourage you to raise this with a health professional involved in your care. What's made you wonder about this - an increase in symptoms?

 

Have you changed where you store your Creon, or how you take it? The capsules are heat-sensitive, so if they're kept in a hot place or taken with a hot drink, they'll be deactivated and stop working properly. I mention this as we're now firmly in the central heating part of the year, and it's easy to accidentally leave things next to a radiator!

 

Please feel free to give the nurses on our Support Line a call - they'll be happy to discuss any questions relating to Creon. You can call 0808 801 0707 or send them an email and they'll get back to you within 24 hours.

 

We also run online support sessions, including one on Managing Nutrition and Pancreatic Enzymes. They're a chance to meet other people affected by pancreatic cancer, and ask a specialist nurse any questions you might have. The next one is on Thursday 25th November at 11am - find out more here: www.pancreaticcancer.org.uk/support-for-you/living-with-pancreatic-cancer-support-sessions/managing-nutrition-and-pancreatic-enzymes.

 

Finally, you can watch recordings of webinars we've held with specialist dietitians here: www.pancreaticcancer.org.uk/webinars. With over a decade of taking Creon under your belt, much of it may not be news to you, but there might be some tips and tricks that are.

[TLC]

Hello @worrier

 

My husband takes 12 capsules of Creon per meal (the quantity varies with the size of the meal and how much fat it contains).

 

The GP prescribed only 3 per meal but the oncologist told us to increase the dose little by little until the poo no longer floats and the tummy discomfort improves. We increased by 2 capsules to start with, stuck to the same dose for 4 days and if the symptoms persisted, we would add 1-2 more and wait and see. I know other people who take more that 20 per meal, it really varies with individuals.

[Support Team]

16 hours ago, TLC said:

Hello @worrier

 

My husband takes 12 capsules of Creon per meal (the quantity varies with the size of the meal and how much fat it contains).

 

The GP prescribed only 3 per meal but the oncologist told us to increase the dose little by little until the poo no longer floats and the tummy discomfort improves. We increased by 2 capsules to start with, stuck to the same dose for 4 days and if the symptoms persisted, we would add 1-2 more and wait and see. I know other people who take more that 20 per meal, it really varies with individuals.

Good morning,

You might find it helpful to touch base with the Nurses on the support line as they are able to discuss this with you and ascertain if there are some other aspects that might help with improving the use of the Creon.  The Support Service is open today and on the non public holiday between Christmas and the New Year. 

Please feel free to give the nurses on our Support Line a call - they'll be happy to discuss any questions relating to Creon. You can call 0808 801 0707 or send them an email.

 

This might be helpful in the first instance.

 

Dianne

 

[Skippy]

My brother post Whipple was advised to take 2 every meal. No other advice given as covid erupted.  It appeared to not clear symptoms of his loose motions and had diarrhea so reading this site he increased his intake to 4 tablets per meal which improved the symptoms. 

[worrier]

On 11/13/2021 at 4:20 PM, worrier said:

Hi, I had a Whipples Procedure in August 2008 and was put onto Creon 25000 18 months after the operation. In recent weeks I get the impression that the Creon is not as effective as it once was. Does the effectiveness reduce over time? If so should I consult my GP for a referral? It appears that only a consultant can increase or change the prescription. I have 400 capsules per calendar month.

The reason I sent this question is because lately after going to the toilet. (opening my bowls) I often get a pain or discomfort in my lower abdomen. The pain goes after about an hour but there have been times when it has lasted all day. Anyway I have consulted my doctor and have to submit a stool sample and have a blood test today 31/12/21. So we will see what happens. Thank you everyone for your interest.