How do you deal with Chronic Diarrhea and Pancreatic Cancer treatment?

The first challenge in taking a pancrealipase (Creon, Zenpep, Viokace, Pertzye or Pancreaze) is in optimizing the number of capsules to take for any given meal. When one is prescribed a starting dose, that may not be enough. Body weight, capsule concentration, fat content and portion size are variables that have to be considered. Keeping a daily food journal was the “old-fashioned way of how I optimized the dose noting date/time, meal type, quantity, fat content and then noting stool characteristics and GI symptoms 24-40 hours after consuming the meal to try and pin-down the causative item.

I generally avoid fried and fatty foods, items prepared in butter, limit my use of butter and cream soups and sauces. Otherwise I may take 3-6 Creon evenly spaced out over the course of the meal with the first dose taken immediately before or immediately free the first bite of food. Once enzymes are activated in the intestine, their activity begins to decrease. This is why it is recommended by the manufacturers and dietitians not to take on an empty stomach ahead of the meal. The enzyme activity is being used up before it ever comes in contact with food.

Now there is a much easier way to optimize. There is a dosing calculator thanks to the Canadian Digestive Health Foundation and Craig’s Cause Pancreatic Cancer Society. It is fast and easy to use for optimizing dosage and is at http://digestthis.ca.

Pancrealipase products are not identical and why it is stated in their package inserts. The differences result from how each product is manufactured involving enzyme extraction methods from porcine pancreas, purification and concentration steps and enteric coatings used on the enzymes themselves. This accounts for why one brand may not perform as one would expect but when another brand is tried, may give better results. This is why both the manufacturers as well as registered dietitians suggest first optimizing doasage and if that doesn’t work, evaluating a different brand if the initial one is not achieving the expected performance.

The Irinotecan component of Folfirinox acts on rapidly dividing cells including normal cell types found in the gut. This results in the frequent diarrhea. Imodium did absolutely nothing to control it and I was not prescibed a pancrealipase when I was receiving Folfirinox. So diarrhea was a daily occurrence. I finally got some improvement when I was prescribing various Rx forms such as Lomax, Lomatil, Loperamide and diphenoxylate atropine. I then experimented and rather than wait for the onset of symptoms, took those anti-diarrheals (only one type at a time) proactively instead of reactively. It was a balancing act in taking it daily so,it would not lead to constipation. The final piece of the puzzle in completely stopping the diarrhea was being prescribed the correct dose of Creon and then optimizing when my diet varied from mostly non-fat and low fat, small portions as recommended my dietitians and my surgeon.

Other factors causing diarrhea despite taking a pancrealipase and anti-diarrheals is a GI tract co-morbidity. It is not unusual for one of these comorbidities to develop after having Whipple surgery. Celiac disease (gluten sensitivity, Lactose sensitivity, Crohn’s Disease, Ulcerative colitis, and forms of IBD/IBS can be at play and the patient is unaware. I personally know Whipple patients where this has occurred and was detected by seeing a GI specialist and having a diagnostic work-up performed.

A patient can try and determine whether lactose intolerance and/or gluten sensitivity is plying a role as the causative reason for diarrhea. One has to maintain a diet free of dairy and gluten containing products and then introduce one type back into the diet. If dairy triggers diarrhea while no gluten containing products are consumed, the next step is to try a lactose-free dairy product or use lactase pills to digest the milk sugar. Then introduce gluten back in. If no reaction, it is ruled out and dairy was the culprit. If GI issues manifest, celiac disease can be a duel co-morbidity and will have to be controlled by adjusting the diet to gluten-free products.

The other morbidities- Crohn’s, Ulcerative colitis, etc., require diagnostic techniques performed by a GI specialist.

A helpful comprehensive publication from the Pancreatic Cancer Action Network (PanCan.org)-

DIET AND NUTRITION

PANCREATIC ENZYMES

Controlling Diarrhea

Management of Diarrhea
* Limit or reduce excess fiber (insoluble)and gas forming foods such as beans, whole grains, raw vegetables, and fruit.
* Soluble fiber is good (through food or supplementation)
* Avoid sweets and foods containing a lot of sugar.
* Increase fluid intake to avoid dehydration.
* Strive for 5-6 small meals of low fiber foods such as applesauce, bananas, white toast, oatmeal, crackers, or a plain baked potato.
* Avoid dairy products other than yogurt containing live cultures called probiotics. Use lactose free or low lactose products
* Limit/avoid fatty, greasy fried foods
Source: https://pearlpoint.org/nutrition-guidelines-following-a-whipple-procedure/

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Thanks for info...MUCH APPRECIATED!!!!!!

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The first challenge in taking a pancrealipase (Creon, Zenpep, Viokace, Pertzye or Pancreaze) is in optimizing the number of capsules to take for any given meal. When one is prescribed a starting dose, that may not be enough. Body weight, capsule concentration, fat content and portion size are variables that have to be considered. Keeping a daily food journal was the “old-fashioned way of how I optimized the dose noting date/time, meal type, quantity, fat content and then noting stool characteristics and GI symptoms 24-40 hours after consuming the meal to try and pin-down the causative item.

I generally avoid fried and fatty foods, items prepared in butter, limit my use of butter and cream soups and sauces. Otherwise I may take 3-6 Creon evenly spaced out over the course of the meal with the first dose taken immediately before or immediately free the first bite of food. Once enzymes are activated in the intestine, their activity begins to decrease. This is why it is recommended by the manufacturers and dietitians not to take on an empty stomach ahead of the meal. The enzyme activity is being used up before it ever comes in contact with food.

Now there is a much easier way to optimize. There is a dosing calculator thanks to the Canadian Digestive Health Foundation and Craig’s Cause Pancreatic Cancer Society. It is fast and easy to use for optimizing dosage and is at http://digestthis.ca.

Pancrealipase products are not identical and why it is stated in their package inserts. The differences result from how each product is manufactured involving enzyme extraction methods from porcine pancreas, purification and concentration steps and enteric coatings used on the enzymes themselves. This accounts for why one brand may not perform as one would expect but when another brand is tried, may give better results. This is why both the manufacturers as well as registered dietitians suggest first optimizing doasage and if that doesn’t work, evaluating a different brand if the initial one is not achieving the expected performance.

The Irinotecan component of Folfirinox acts on rapidly dividing cells including normal cell types found in the gut. This results in the frequent diarrhea. Imodium did absolutely nothing to control it and I was not prescibed a pancrealipase when I was receiving Folfirinox. So diarrhea was a daily occurrence. I finally got some improvement when I was prescribing various Rx forms such as Lomax, Lomatil, Loperamide and diphenoxylate atropine. I then experimented and rather than wait for the onset of symptoms, took those anti-diarrheals (only one type at a time) proactively instead of reactively. It was a balancing act in taking it daily so,it would not lead to constipation. The final piece of the puzzle in completely stopping the diarrhea was being prescribed the correct dose of Creon and then optimizing when my diet varied from mostly non-fat and low fat, small portions as recommended my dietitians and my surgeon.

Other factors causing diarrhea despite taking a pancrealipase and anti-diarrheals is a GI tract co-morbidity. It is not unusual for one of these comorbidities to develop after having Whipple surgery. Celiac disease (gluten sensitivity, Lactose sensitivity, Crohn’s Disease, Ulcerative colitis, and forms of IBD/IBS can be at play and the patient is unaware. I personally know Whipple patients where this has occurred and was detected by seeing a GI specialist and having a diagnostic work-up performed.

A patient can try and determine whether lactose intolerance and/or gluten sensitivity is plying a role as the causative reason for diarrhea. One has to maintain a diet free of dairy and gluten containing products and then introduce one type back into the diet. If dairy triggers diarrhea while no gluten containing products are consumed, the next step is to try a lactose-free dairy product or use lactase pills to digest the milk sugar. Then introduce gluten back in. If no reaction, it is ruled out and dairy was the culprit. If GI issues manifest, celiac disease can be a duel co-morbidity and will have to be controlled by adjusting the diet to gluten-free products.

The other morbidities- Crohn’s, Ulcerative colitis, etc., require diagnostic techniques performed by a GI specialist.

A helpful comprehensive publication from the Pancreatic Cancer Action Network (PanCan.org)-

DIET AND NUTRITION

PANCREATIC ENZYMES

Controlling Diarrhea

Management of Diarrhea
* Limit or reduce excess fiber (insoluble)and gas forming foods such as beans, whole grains, raw vegetables, and fruit.
* Soluble fiber is good (through food or supplementation)
* Avoid sweets and foods containing a lot of sugar.
* Increase fluid intake to avoid dehydration.
* Strive for 5-6 small meals of low fiber foods such as applesauce, bananas, white toast, oatmeal, crackers, or a plain baked potato.
* Avoid dairy products other than yogurt containing live cultures called probiotics. Use lactose free or low lactose products
* Limit/avoid fatty, greasy fried foods
Source: https://pearlpoint.org/nutrition-guidelines-following-a-whipple-procedure/

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Wow. You are amazing. Thanks for sharing. I have gone from 145 to 107 and have been eating well. Optimizing the Creon with higher dosing might help. I agree with the butter. Not good! I ate some cheesecake with a nice dose of Creon and was sorry for the next 24 hours. Given that my stools still float, I feel I need higher dosing. I am thankful that I do not have diarrhea although the frequent poops are very disruptive in my life.

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Wow. You are amazing. Thanks for sharing. I have gone from 145 to 107 and have been eating well. Optimizing the Creon with higher dosing might help. I agree with the butter. Not good! I ate some cheesecake with a nice dose of Creon and was sorry for the next 24 hours. Given that my stools still float, I feel I need higher dosing. I am thankful that I do not have diarrhea although the frequent poops are very disruptive in my life.

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I was diagnosed with stage 3 pancreatic cancer in jan 2021. I have had Whipple surgery with msv reconstruction followed by 12 treatments of Folfirinox. Dietician guidelines for Creon were:
Take 300-1800 units per gram of fat, or 500-2500 units per kg of body weight per meal. Too little Creon results in gas, bloating and diarrhea. Sufficient Creon usually results in darker stools.
I am currently taking 125,000-175,000 units immediately prior to eating a meal with generally good results - no gas, bloating or diarrhea, although still no change in stool colour. I was assured it is almost impossible to overdose on Creon, so to continue to increase until stools darken to normal colour. Recently, they had me try to reduce the amount I was taking but that resulted in gas and diarrhea returning. I have had to adjust dose as I slowly regained weight. Latest discussion indicated stool colour can also be impacted by surgery, so the go more on how I am feeling than colour of stool. All the best to you!

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Are you taking the Creon all at once or staggering the capsules throughout the duration of the meal as it should be?

The Canadian Digestive Health Foundation has developed a dosing calculator making it easier to determine the amount of capsules necessary for efficient digestion. The calculator is at https://digestthis.ca

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