Help with floating stool and weight loss

[JohnDoe60]

Hi,

My Mom had her Whipple 7 months ago and went through 12 cycles of Folfirinox which ended 2 months ago.

She is now eating very well and quite a lot, but struggling to gain weight.

She has been taking 36,000 Creon with meals, and for her weight (45kg), that would be the appropriate dose. Sometimes she takes 48,000 if the food is rather oily, like ribs, for example.

However she has diarrhoea every other day, and to combat that, the doctor asked her to take 1mg of Loperamide in the morning and in the evening. She is mostly eating low-fat and low-sugar diet.

The diarrhoea is controlled, but she still has floaty stools, although not to a degree of steatorrhea.

What should we do? Should we try to bump the Creon dose?

Please advise. Thank you very much for your help.

[PCUK Nurse Jeni]

Hello JohnDoe,

Thanks for your post and enquiry regarding some symptoms your mum is having.

John, I am not sure if you are in the UK or not, but I suspect not given the dosing of your mum's creon she is taking, is this correct?

Here in the UK, we do not advise anyone who had had pancreatic cancer surgery to eat a low fat diet, simply because it is the fat content which adds calorific value to meals, which leads to weight gain. Also, a person will need this to help recover from the surgery.

We also don't base the dose of creon on a persons body weight, as we know that high doses are needed to provide optimum digestion and absorption of anything eaten. This is why I am wondering if you are outside the UK, as I can see differences in practice.

The presence of the diarrhoea, floaty stools and absence of weight gain also can denote not enough pancreatic enzymes, and there should be no need to use loperamide for diarrhoea if good doses of creon are being taken.

The dose of enzymes your mum needs is individual to her. It is important to know, that she cannot take too many capsules, in fact recent research shows that a healthy pancreas will produce approx. 720,000 units of lipase during a meal (it will also produce amylase and protease). We need about 10% of this to digest our food properly. If you compare this to the dose your mum is taking, her current dose is far too low.

We recommend that a person should start with a minimum of 50 - 75,000 units per meal, and 25,000 units approximately per snack and per milky drink, remembering the higher the fat content, the more needed. It would be in your mum's best interest John, to begin to increase the creon as of immediately, in order to gain maximum benefit from it.

I am sure that others will respond to your post similarly, especially those who have experience of using it themselves.

Kindest regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[JohnDoe60]

Hi Nurse Jeni,

Thanks for replying.

You are correct, I am not in UK, but based in Singapore. I figure the practice in Commonwealth states should be quite relevant.

The oncologist only told us to take 2 Creon (in Singapore the capsules only come in 10,000 Units, or 12,000 USP [American Units]) per meal and 1 per snack. The doctor once mentioned that "floaty stools are fine, as long as it is not diarrhoea".

I suppose the Unit you're referring to is the British Unit, which means we have to take between 5 to 7.5 capsules with each meal. That's a lot of capsules, and Creon is also very expensive

Aside, any other recommendations for pancrelipase, beside Creon?

I shall try the dosage as soon as today. Thanks for your reply.

John

[PCUK Nurse Nicola]

Hi JohnDoe60,

My name is Nicci and I am one of the nurses that works alongside Jeni. I have sent you a direct email with some further information regarding this, I hope thats okay.

Kindest Regards

Nicci

Niici Murphy

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707