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Creon


StPancreas

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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

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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.

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PCUK Nurse Nicola

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

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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.

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PCUK Nurse Rachel R

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

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  • 2 months later...

can I take creon with cold milk or does it have to. be with water. if I take it with water it makes me gag but if with milk it seems to be ok.

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PCUK Nurse Rachel R

Hi there hiljohn,


Rachel here - one of the nurses.


The recommendation is to take Creon with water but if this is the only way that you're managing it then I would think taking it with a small amount of milk would be fine. I see you mention its cold milk as heat will deactivate the enzymes.


If you wish to chat more then please don't hesitate to get in touch - contact details are below.


Best wishes,


Rachel


Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

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  • 4 weeks later...

I’m new to forums here, but have just found this one very useful. I had a Wipples Resection 15 years ago for pancreatic cancer and have been taking Creon ever since. I didn’t know I shouldn’t take it with a hot drink, no-one ever told me how to take it. I always take it with food in the middle of meals, which are sometimes hot meals. I stopped taking Omeprazol years ago as I couldn’t distinguish any benefits from it. I frequently have loose bowels, and then have constipation for several days, but I have assumed that is all a normal part of having undergone such major surgery. I’m just grateful to still be alive and living a full and normal life!

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  • 2 weeks later...

How do I stop foul smelling wind all the time and burps. I think I might need to up Creon. Will this help. I’m having 2x25000 with breakfast same for lunch and 3x25000 with dinner. I sometimes forget about snack time. The wind is terrible all day long. I’m on chemo, gemcitabine at moment and that seems to have made it worse .ive got a good appetite and graze on snacks in between meals. Also on 2 lansoprozole each day ad well as metformin once a day. Can you take too many Creon. I did read somewhere you can’t overdose on them so on average how many should I take of the 25000 a day. I’m only taking on average about 10 each day. Just need to get rid of the foul smell. It’s embarrassing when out and about.

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PCUK Nurse Dianne

Hi Nellie656,


Thank you for your query and pleased you felt able to ask this. The foul smelling wind and burps are often a sign that you are not taking enough Creon.


You highlight a concern we often hear about. When patients are started on Creon, the suggestion is for 2 with a snack and 2-3 with a main meal as a starting dose. A starting dose is usually for the first few days to become accustomed to taking this, and also start to increase your appetite. Then the Creon should be increased. You may be aware that foods that are higher in calories and fat will require a higher dose of Creon as the fats are the most difficult food to break down.


Also this should not be a static dose, some meals will require more Creon than others, one example we use is lean chicken and salad will not require as much Creon as fish and chips.


It sounds that you may benefit from an increase your Creon dose Nellie656, however please do feel free to give us a call or email on our contact details below if it would help to talk through this. You are correct that there is no upper limit of Creon that can be taken, however if taking very large amounts of Creon with meals and still struggling with symptoms, an assessment would consider other factors that may be causing the symptoms.


I hope this is helpful and please do not hesitate to be in touch with us if we may help.


Kind regards,


Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line - 0808 801 0707 (M-F 10-4pm)

Email: nurse@pancreaticcancer.org.uk

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