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StPancreas
Posts: 11
Joined: Tue Aug 13, 2019 10:49 pm

Creon

Postby StPancreas » Sun Oct 20, 2019 6:13 pm

Hi,

My Mum was put on Creon on diagnosis but still has loose floaty,fatty poo. We have upped the doses and she is having to 4/5 x 25000 with a main meal ( child portion) and 2/3 with snacks. Currently takes it with first mouthful - but it is often the second as she forgets.

She had an endosopy in May which identified she has a cup and spill, or cascade, stomach and I think this may be causing an issue. Basically her stomach has a shelf and food gets stuck on the shelf until it overflows into the bottom of stomach. I think the creon might be getting stuck on her shelf and therefore not able to help as much as it should.

Does anyone take Creon part way through their meal rather than at the beginning? Thinking this might work better, so it spills over.

This week she has eaten more as we have been away and together , she has also been sat at the table rather than slouched in a chair and we have seen some improvement . " the worm factory is working!" she says, but i Stil don't feel she is getting the full benefit from the Creon.

Any thoughts or suggestions gratefully received.

Jo

JohnDoe60
Posts: 4
Joined: Wed Jul 17, 2019 6:52 am

Re: Creon

Postby JohnDoe60 » Mon Oct 21, 2019 8:15 am

Hi Jo,

I'm sorry for your Mom's issue.

My Mom also forgets about Creon a lot, and many times she takes it in the middle of the meal. But the doctor always told us to take Creon before she started eating.

Weeks after diagnosis, she frequently has diarrhoea and extremely foul gas, but it gets better with time (months after diagnosis). At that time, my Mom was advised not to take oily food but instead replace the oils with two tablespoons of medium chain triglycerides (MCT) oil for breakfast, lunch and dinner. MCT is absorbed, not digested, so I was told. Eating less oily food really helps with the loose stool. After a few months, her diet was escalated to normal.

I hope this helps.

PCUK Nurse Nicola
Posts: 17
Joined: Tue Sep 04, 2018 9:40 am

Re: Creon

Postby PCUK Nurse Nicola » Mon Oct 21, 2019 4:27 pm

Hi Jo,

Nicci here, one of the nurses that works on the support line at Pancreatic Cancer UK.
In terms of the Creon Jo its fine for her to take it half way through as opposed to the very start of her meal as long as it is when she is still actively eating. The enzymes won't work if taken too long after the meal is finished you see.
Can I also check that she isn’t taking it with a hot drink? This deactivates the enzymes so it’s important to swallow the capsules with a few sips of cold drink. It’s also good for your mum to be on a proton pump inhibitor (PPI) such as Omeprazole or lansoprazole as this will decrease the production of stomach acid and make a better environment for the Creon to work.
I hope this helps? Please feel free to contact us if you would like to talk anything through. Our support line is open Monday-Friday 10am-4pm and the number is in the signature below.

Nicci

Nicci Murphy
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

StPancreas
Posts: 11
Joined: Tue Aug 13, 2019 10:49 pm

Re: Creon

Postby StPancreas » Tue Oct 22, 2019 8:05 pm

Thanks. She was prescribed lansoprazole but has got out of the habit of taking it as it said 30 minutes before food and sometimes she wanted breakfast straight away.

Is that a rule we should stick with, or is there some leeway? I've suggested keeping them by her bed and taking it on waking while she is mustering strength to get up but they still get forgotten,

Or she takes one but while she is waiting for the 30 minutes to be up before she can eat she gets distracted or goes off the idea of eating so misses out on calories.

Just need to find a way of getting her to up her game.

PCUK Nurse Rachel R
Posts: 62
Joined: Thu Jan 25, 2018 10:52 am

Re: Creon

Postby PCUK Nurse Rachel R » Thu Oct 24, 2019 2:13 pm

Hi StPancreas,

It's Rachel here, one of the other nurses.

Yes we would usually encourage folk to take the PPI medication regularly, most people tend to take this as a once daily medication or for some that continue to struggle with absorption it may be appropriate to divide this into 2 doses, this would be something to consider discussing with Mom's clinical team. In the first instance though yes taking this every day to see if it will benefit is advisable.

Just reading back through your original post, due to the stomach issue you identify it would definitely be worth spreading the enzymes out and ensuring that Mom is taking them at the end of the meal also. The priority is ensuring that food and enzymes mix together. Often there is no exact science behind Creon, it a little of trial and error. Keeping a record too to try and help see what is working or what is not can be useful too.

If things don't improve then do please send us an email or give us a call and we can talk more in detail.

Hoping things improve soon.

Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707