What are other survivors doing about pancreatic enzymes replacement?

@aceman66
Chronic constipation 5 weeks post-Whipple is surprising to me; I'm almost jealous!

Seriously though, if you haven't already informed your surgeon of this fact, you probably should, just to make sure you don't have some kind of blockage, gastric paralysis, or delayed gastric emptying. Also, if you're taking any opioid pain meds, they are notorious for contributing to constipation.

I lost about 15 pounds in the first 6 weeks after my Whipple, but have been at a very stable weight for the year since.

My big side effect after Whipple was "steatorrhea," which may be similar to diarrhea in consistency and frequency, but noticeably more oily (floating) and orange in color, indicating the need for more enzymes (particularly lipase to digest fat if you're consuming any). I'm a big meat eater and coffee drinker (with heavy creamers), and was consuming some serious "comfort foods" (ice cream, banana nut bread w/ real butter) and other sources of fat that were wreaking havoc on my digestion day and night.

Since normalizing my diet somewhat, and starting enzymes (I didn't have any the first 5 weeks), it has all been under pretty good control. I seem to only get the extra gas with certain foods or if I take too many enzymes, but steaorrhea if I take too few. Three of the 36K unit Creon capsules is about right for me with a typical meal.

Your mileage may vary, and you may need another few weeks to get the right balance. It helps to back off most of your foods and drinks for a few days, then keep a journal as you start adding new ones. It's not surprising to still be a little out of sorts this soon after surgery.

i just had whipple surgery 5 weeks ago and I am still miserable with trying to eat enough to keep my weight on.I have gas and indigestion with burping mostly after every meal. Still having a lot of surgical pain and that just adds to it. Wondering how you can tell if pancreatic enzymes are needed and if they would help or not? Also how many do you take? I have chronic constipation and worried about them causing more of that.

I found Creon did not increase my chronic constipation. Even though I had gas and oily stools, I still needed to take Miralax. Over 6 months, the dose of Creon was increased until I finally got to a dose that controlled it, 36,000 units two with a meal. I was starting to regain weight before the Whipple's. I was down 7 lb after surgery. I struggled with gas, abdominal discomfort and increased constipation after surgery. I am now 6 weeks out from my Whipple's. It has been difficult. To eat six times a day, I need to eat about every 3 hours. I am not hungry but I am able to eat. If I wait until I am hungry, I am not able to eat enough at a meal to get my calories in. I have been working with the hepatobiliary dietician at MSKCC and nut butters were suggested as a way to increase calories. I have tried almond and cashew butter since I was really tired of peanut butter. I have started gaining some weight. It has been a difficult six weeks. Just in the past few days I have felt more like myself fand begining to feel more hopeful about getting back to my usual state of energy

I really do not notice that my stools are oily and they do not float but I am always in pain and have tightness at top of my incision . This is constant . I wanted my doctor to do a cat scan but he said I didn’t need one . The tramodol does not help the pain so there is no relief . Does anybody else have this issue ? Not gaining any weight but maintaining now after losing 10 lbs . Fixing to start chemo and don’t feel I can tolerate it.

i just had whipple surgery 5 weeks ago and I am still miserable with trying to eat enough to keep my weight on.I have gas and indigestion with burping mostly after every meal. Still having a lot of surgical pain and that just adds to it. Wondering how you can tell if pancreatic enzymes are needed and if they would help or not? Also how many do you take? I have chronic constipation and worried about them causing more of that.

Hello @patti1952

The Whipple procedure was developed by a Dr. Whipple back in the 1930's. It is a surgery for early stage pancreatic cancer patients.. (Although doctors at Mayo are developing procedures that are allowing them to successfully do surgery on patients with more advanced stages now.) In a typical Whipple, the surgeon removes the cancerous tumor from the pancreas, the duodenum, the gall bladder and part of the stomach. The surgeon then attaches the stomach and the pancreas to the small intestine.

In my case, I had already had gall bladder surgery, so the surgeon removed my duodenum, 1/3 of my stomach and most of my pancreas. What was left of my pancreas was so bad that the surgeon did not attach it to the digestive system. The pancreas makes insulin and digestive enzymes. I am now a Type I diabetic and I have to get the digestive enzymes in capsules every time I eat.

If you have any other questions, let me know and I will try to answer them.

Marv

I had a Whipple at Mayo Clinic nearly 12 years ago and have been on a number of different pancreatic enzymes over the years. I currently taking Creon, but it’s so incredibly expensive. I’d love to hear more about the Pure Encapsulation.

I have Medicare and my medications are very expensive. After I go thru the basic $4800 then I go into the donut hole". I pay 20% 50 the cost, the manufacturer pays half of that. My 3 month supply of Creon, 36,000 three four times a day has a cost of $14,000. This year I made it into the "catastrophic range" and paid a 5% copay. The olaparib (Lynparza) is $15,000 monthly so the monthly copay was $800. Fortunately, I just started in September2023. In 2024 the 5% co-pay will go away so I will just have to make it thru the donut hole. Both medications have manufacturer programs for free medication by I do not qualify for either manufacturer programs. Some insurers may require use of a mail order pharmacy to cover the cost. Insurance companies vary widely in their coverages so it is important to know your own insurance benefits.