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What are other survivors doing about pancreatic enzymes replacement?
I am a 4 year survivor of pancreatic cancer. I have been on creon since my Whipple. It is very expensive. I talked to someone who was using Pure Encapsulation instead of creon. The formula doesn't match my creon, but it is about 1/4 the cost of the co-play on creon. What are other survivors doing about pancreatic enzymes replacement?
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I have just started on pancreatic enzymes and do not know what I am doing . It is Creon and my abdomen gets more tight as the day goes on . Am I not taking enough enzymes . Not even sure I need them . My only symptom is gas and abdominal pain and swelling . No diarrhea or floating fatty stools . I have pancreatic cancer.
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1 ReactionAceman66, I had my whipple on july12 and it has been a miserable time. Everyone has been telling me I’m doing great but couldn’t eat couldn’t sleep and pain was miserable. For the past week I have been taking 2 36000 creon tabs with each meal. Eating 1 gas x tab after each meal, and taking a dose of miralax every morning. This has been a life saver, the only issue over the passed week has been the top of my scar pain. Get your diet under control and you will be good
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1 ReactionI also have the same stomach problem. When it is serene I drink broth to rest the pancreas and don’t take any enzymes with it. I truly haven’t felt good for 3 years. Losing weight, afraid to eat because of stomachache and side pain. I don’t feel well on Ceron but have to take it. Good luck I had chemo before the Whipple and helped shrink my tumors.
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2 ReactionsI 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 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
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2 ReactionsMy husband had the Whipple in February. He currently takes Zenpep 40,000 capsules - 5 w/meals and 2 w/snacks. He has worked his way up to this dosage and still struggles with loose movements, etc. How do you know when to stop increasing? It is so hard to tell if it’s the chemo or a combination of things causing bowel troubles. Any insight would be appreciated as always.
@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.
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4 Reactions"I also don’t eat meat or dairy so I don’t need all the digestive enzymes."
Again, my point is protein isn't just in meat and dairy. You need protein to survive of which you claim that you don't need all the enzymes because you don't eat meat or dairy. BUT you are still eating protein which requires pancreatic enzymes to digest, whether supplements or your own natural pancreatic enzymes.
You can't see the forest for the trees.
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.
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1 ReactionIf you go back & read my previous comment. I stated that I also do take a plant based digestive enzyme which is a full spectrum enzyme called Pure Synergy. I supplement that with fresh papaya.