If you're like me and have had surgery on your pancreas, whether a distal pancreatectomy and splenectomy or the whipple procedure, you need to make sure that your body is still able to process the food you're eating! The pancreas is an amazing little organ because it actually has 2 jobs! The first you may well know, is the endocrine function. The pancreas is full of cells that make hormones called insulin and glucagon. These hormones help to regulate blood sugars. The hormones are released by cells called Islets of Langerhanans into the bloodstream, that is why they directly affect blood sugars!
If someone develops tumors on these cells they are called pancreatic neuroendocrine tumors. The other job the pancreas has is called exocrine function. The pancreas is also (actually mostly) full of Acinar Cells. These cells produce the enzymes needed to break food down and transport them into ducts that carry on from the tail of the pancreas through to the duodenum.
A healthy pancreas produces about 8 CUPS of these enzymes a day!
When someone gets a cancerous tumour on one of these cells, it's called pancreatic cancer or adenocarcinoma.
Digestive enzymes are what break down the food you eat into tiny pieces that your body can absorb as nutients. Without them, you would quickly become malnourished and full of food that would start to rot inside of you.
The food we eat is made up of the following macros: carbohydrates, protein and fats. The enzymes that are formulated in strong enough doses and offered by prescription are made up of the enzymes that match each of these.
Amylase to break down carbohydrates, protease to break down protein, and lipase to break down fats. Your body cannot break down food small enough without these vital enzymes.
So why am I explaining all of this? Because it's so important to know the parts of you that are missing so that you understand why you may be feeling crappy after you've healed from your surgery! If you have ANY part of your pancreas removed or even if blood vessels or ducts are blocked from receiving these valuable substances, it will affect your health!
I'm attaching a rudimentary sketch for you here, to visualize this better. Now picture how much of your pancreas is missing, or not functioning, and how many of the enzyme producing cells that is affecting.
SYMPTOMS
I knew a few weeks after I was home from surgery that something wasn't right. I felt like my insides were full and things weren't moving. I was bloated and had cramping and pain in my upper abdomen, under my ribs, and a strange shoulder pain that ran down the side of my neck to my shoulder (called referred pain) all because I wasn't given enzymes to digest my food!
I was also constipated all the time. This is nothing like the symptoms that doctors say to look for which is just "floating or oily stools". Some people get diarrhea and vomiting too but I didn't.
I eventually developed a lump in my upper abdomen, like a tiny food baby that just sat there and hurt me for so long until the pain got so bad I had to go to the emergency room. I had pancreatitis! And I will mention here that because I'm missing so many enzyme producing cells, the doctor wasn't sure I really had pancreatitis, because they test lipase levels to help diagnose pancreatitis, and obviously I'm not producing enough to digest food, let alone show high levels for this test!
I was not told at first that I needed digestive enzymes, as I "still had the head of my pancreas, and that all the important things are done in the head of your pancreas and therefore you'll be fine". Well looking at the anatomy of the pancreas, that is clearly not the case to me! I was eventually given prescription strength enzymes.
I had to try a few different brands and adjust the amounts as each brand is formulated differently. Most are made from synthetic pork enzymes although I did try ones that were actual pork enzymes that didn't work very well for me. (I also should mention that I was not able to take the enzymes at the same time as calcium supplements, it made me feel sick, so that's something to consider if you take those.)
The digestive enzymes that I take now are called Cotezym ECS20, Similar to the popular Creon that most people take. Each brand is formulated differently and if you look on the inserts, you can see how many amylase, protease and lipase it contains. It is interesting to note that although each brand is different, I have found that they are all formulated towards a SAD diet with higher amylase and often less and equal parts protease and lipase. This is something that you need to consider if you eat a low carbohydrate diet like I do, resulting in higher fat and protein portions. I had the crazy shoulder pain come back not long after switching to low carb and had to up my dosage again. I now take 3-4 with each meal and that seems sufficient. Each pill that I take contains 100,000 units of Amylase, 100,000 units of Protease and 25,000 units of Lipase, just to give you an idea. I will take 5 or up to 6 if the meal is very decadent or fatty, like a big steak meal out, which I still enjoy every so often, even after all these years!
My brother had a total pancreatectomy a few years ago and after surgery wasn't able to keep any food down. His life was wretched and he was always in the hospital. They had him on a ton of drugs trying to stop the constant puking and diarrhea but nothing helped it. He was taking 3 capsules of what I am, per meal, as per his doctor. He was missing ALL of his enzyme producing cells from his pancreas, and they only gave him 3 per meal!! I told him about all of the things I'm writing here and he decided to up his dosage himself because nothing else seemed to be working. And overnight it was like a miracle! We still talk about how important this little trial was. He tells me every time I see him for a while after that, that it changed his life. No more puking and diarrhea and malnutrition! He's a new man and is able to work very hard at his job!
The maximum dosage for digestive enzymes is actually quite a few so I don't understand why doctors seem hesitant to prescribe the proper amount instead of the old adage of: "let's try a small amount and see"....see what? How fast you feel sick and malnourished?
This is why it's so important to me that you know that you might need something that doctors don't seem to think you might need, and advocate for yourself to make sure you get them.
I can't imagine my life without my enzymes!
Not only do they help digest food, but they ensure that my immune system is strong by helping to make sure that my intestines don't become overrun with harmful bacteria, yeast and other parasites. SIBO is very common in this scenario.
Undigested proteins also cause a buildup of toxic substances and can lead to allergies!
I just came across yet another reason we need to be taking enzymes:
Recently I picked up yet another book about diabetes. This one written by one of my favorite authors, Sherry A. Rogers, M.D. who has written a large number of books. The book is called How to Cure Diabetes. I know I cannot cure my diabetes due to having most of my pancreas removed, but I was super curious as to what she would tell me as I find her to be extremely knowledgeable about the human body.
So...I was packing for a trip and happened to grab open the book to find a section called "Pancreatic Enzyme Deficiencies Also Promote Cancer" and immediately devoured that section. She basically says that cancer cells have a protective slimy coating on them that make them invisible to your immune system and a role of the pancreatic enzymes is to dissolve that layer!
I wish I could share that entire section of her book here because it actually blew my mind. She includes references in her book to support this claim.
I will add her references here for anyone wanting to read the clinical studies.
So hopefully this helps you decide if you need to include prescription digestive enzymes in your daily regimen!
Thanks for tuning in and please be sure to check out my other blog posts!
After my Whipple where my entire pancreas was removed (and various and sundry other parts), I was allowed to choose whether to take pancreatic enzymes, so I said no. Where did I get my medical degree? :-) After I almost wasted away to nothing, I gave it to Creon and gained 10 pounds back! I can't live without enzymes and actually, no one can. Creon was and is a lifesaver for me, but others may need a different prescription.
Thanks for blog-posting this #34 article about why you may need pancreatic enzyme supplementation if you've had ANY kind of pancreatic surgery. I had a resection of a large part (about 85% of my entire pancreas) of the body and tail of my pancreas to remove a considerably large Neuroendocrine tumor. Although this disease is often referred to as a pancreatic NET, the "tumor" is definitely cancer. I usually refer to it as a "Pancreatic NET Carcinoma." Your experience was quite like mine in that nobody told me that I would need pancreatic enzyme supplements until my weight dropped from 155-160 lbs. to around 110 lbs. because, as you point out, everyone thought that because the 15% or s…