Pancreatic insufficiency/ Digestive enzymes

Pancreatitis
,
#1

Hi,
I’d like to know which enzymes others have found successful for dealing with pancreatic insufficiency. I was diagnosed last summer and given Viokase 16 and Prilosec to take as well. I had a bad reaction to the Prilosec (cramping, diarrhea) and the same reaction to Zantac. So have been taking Viokase without a proton pump inhibitor. It seems to help most of the, but I’m still not digesting as much as I should be and am still finding it difficult to gain weight. I also tried Pancrelipase, which was the only one available to me here (I live overseas), but it didn’t work at all.

What have others experienced with these enzymes? Has anyone found enzymes that work better or have any suggestions for making them work better? If I knew what would work I could get it here somehow. My Dr. is going to special order more Viokase, but if there’s something that might be better I would prefer to try it.

Thanks for your comments and suggestions.

#2

Hi Volup, I was just caughting up with some emails and saw your input. Is Creon a pain med or a enzyme? I know that I take around 15-20 per day of my enzymes. They are called Pangestamine? I think I spelled that right? anyway having lots of itching and pain so need to go lay down awhile. I will check in later tonight…Hi to everyone here on Careplace/firefly sending all big hugs and prayers…Mrs. Barb/Barb :wink:

#3

MJS,

Have you tried Creon?

Vonnie

#4

No, I’ve only tried Viokase and Pancrelipase. Does Creon need a proton pump inhibitor? How much do most people take? My Dr. told me 4 Viokase 16 (64,000 lipase units) with meals and 2 with snacks. That seems to be more than I’ve usually seen referred to on the net.

#5

Creon does not need a pump. The amount you take is very indvidual and you need to figure that out with or without your doctor. A few people here use Creon. I’ve used it. Right now I’ve been taken off because my doctor told me that there is no evidence that enzymes help. So far I am doing ok without.

Vonnie

#6

Creon is an enzyme. The beauty of enzymes is that they are not absorbed so technically, you can not OD on them. However, that having been said, more is not necessarily better. You need to customize the amount you take to what works for you. Some with CF take very large doses (more than you will read on the internet) with great results. When I was eating (prior to my PEG-J tube), I was taking 3 Creon 20 with meals and 1 with snacks. I was up to 5 but my doc felt that I did not need that much and said I should cut back to 3. It helped with the pain somewhat but not so much with the diarrhea and malabsorption. Each enzyme preparation has different amounts of the 3 pancreatic enzymes (amylase, lipase, protease) so you need to play around to see what works. These meds are NOT interchangeable but trial and error is the only way to see what works.

T

#7

It’s true that you have to experiment to see what works. I’ve usd both ultrase (enteric-coated enzyme capsules, made by the viokase people) and viokase (non-coated tablets of the same enzymes). I couldn’t see much diference between the two as far as pain relief, but some research says that the non-ooated preparations are actually better for keeping the pancreas quiet, because the enzymes are released higher in the small intestine, where the pancreas-shushing needs to happen. I’ve also heard that it varies between people - one type works for some, another for others.

I’ve gained a few pounds since switching to the viokase, and I feel more energetic, so it may be that I’m absorbing better. Hard to say yet.

The biggest difference I’ve found - for me, at least - is taking even more pills helps the pain and food tolerance, and this is ordered by my Mayo doctors. I didn’t think it was a good idea to take a lot, but they keep telling me I’m doing the right thing. I take a mimium of 4 with meals and 2 with snacks, but usually more. Recently I took 9 over the coure of a long meal, and after.

I find it helps to take the minimum dose, say 4, before I eat. Then, if the meal is larger or fattier than my normal meal, I may take another one while I’m eating or right after. If I start feeling hurt coming on in the hour after I eat, I take one or two more. That’s how I ended up with 9 for that one meal. Four to start the meal, a couple later on (it was a long, social restaurant occasion), and then another - the seventh, after I finished eating.

But by then I was hurting enough that I was considering a pain pill, which I avoid as much as possible. I decided to swallow two more viokase instead, to see what happened. It calmed things down and I didn’t need a pain pill. I was shocked.

When I had my check-in with my doctor asked about the nine pill meal, she told me I had done the right thing. She’s not concerned that I’ll take too many enzymes. She wants me to eat, absorb and gain. Unlike what I had heard about limiting fat intake immediately, she says I should eat as much as I can tolerate, and to increase that toleration by taking more viocase (and to supplement with plenty of protein for weight gain). I still feel skeptical even though it continues to appear that she’s right.

About the proton pump inhibitor, can you take Nexxium? I’ve known people who can only take that brand.

#8

WRT the PPI, I take Protonix. I was on Aciphex which helped the most but it was tier 3 with my insurance so I take Protonix 3 times a day instead of Aciphex 2 times a day. I can not take the Nexium because I have migranes and the Nexium tends to exacerbate them. Doc K shyed away from Prevacid because it tends to cause more diarrhea, which is the last thing I need. It is interesting that you got relief from taking the enzymes post eating. they usually need to be on an empty stomach but if it works, continue with it. Regarding pain meds, just remember that if the pain is very severe, all the pain meds in the world won’t help. You need to take them at the first sign of pain to ward off the severity. Don’t be afraid of them. They, like the enzymes, are there to help. Don’t worry about addiction. If you do not have an addictive personality, you won’t become addicted. You may, however, become tolerant, which is different. I have been on the same pain regime for over a year with no increase in dosing (actually I have decreased the fentanyl strength because I got too dizzy). When my CP is cycling, the docs order dilaudid for short term which really helps. On a day to day basis, I have the fentanyl patch (12 mcg) and Vicodin ES. On an average day, I take 2-3 Vicodin. After my celiac plexus blocks, I can go weeks without taking anything. I don’t worry about the effects of the pain meds because they help more than harm. I do worry about the amount of Tylenol I take, though. 750mg per tab is quite a bit. But, once again, I can have a normal life with them so I continue. I have a friend that is an anesthesiologist with specialty in pain management and he is not too concerned. Unfortunately, this will be a lifelong thing, unless, of course, the pancreas burns itself out, which is always a possibility. Then the pain stops, but the diabetes becomes severe.

Good luck and prayers to you.

Teresa

#9

Teresa,

How long have you been dealing with your CP?

Also, I didn’t know that phrase, that your CP is “cycling.” That word fits.

I totally agree with you that the pain management is critical. I have no qualms about long term pain meds when I get to the point that it’s necessary. In fact, it’s comforting to hear about those of you who say it’s working pretty well for you and giving you a normal life. I feel like you’re lighting the way by showing what’s possible down the road.

I know I’m in the stage of luxury, of using pain pills only sometimes, and being able to debate and strategize to avoid them.

Besides keeping my doctor happy (she’s fiercly narcotic avoidant, though she does prescribe them for me and knows they can’t always be avoided), I think it’s just about enjoying a certain amount of “control” in the disease (just a mind game). Can I avoid taking a pain pill. Oh, yes, victory. Oh, look (to self), we don’t need pain pills, things aren’t so bad, maybe we’re really almost normal. Denial is a sweet thing, from time to time. Sweeter, I think, than the moments when my guard is down and dark thoughts about the future start closing in.

Anyway, I know what you mean about the Tylenol. I take quite a bit of it too, though I know the limits. Long term use doesn’t seem like a good thing.

#10

I have had symptoms since I was 15 (I am now 43…no 42) but was not officially diagnosed until I had an EUS in 2005. I work in the pharmaceutical field (I am a pharmacy purchaser) so I know quite a bit about pain meds. I was never on more than Tylenol until about 3 years ago when the CP got really bad. The word cycling describes the disease to a T. I have about 3-4 bouts of severe CP per year, usually being admitted for hydration, antiemetics, and IV pain meds. Like I have said in the past, hydration is your best friend. My CP usually gets bad at the end of the summer, when I have had a busy few months of summer camp, baseball, and other outdoor things, along with other times when I do not take care of myself. I am a district commissioner for boy scouts, a baseball coach, CRE teacher, and volunteer for the Lions Club in town, along with having a full time job and taking care of a family. I have no time to be sick so I take full advantage of whatever I can, including pain meds. I tend to look on the bright side of things, but my doc says I need to take my disease a bit more seriously. I currently have a feeding tube so (looking on the good side), I don’t have to stop to eat…LOL. I just had surgery this past Thursday. Doc P “looked around” and did an appendectomy. The small bowel looks good and the appendix actually looked OK but he wanted to take it out to “take it out of the equation”. In addition to CP, I have gastroparesis and esophageal dysmotility. My GI tract is a mess but I deal with it.

Take care and keep me posted on your progress.

Prayers

Teresa

#11

I love this group. I learned a lot today as I read these posts. I had company this week so didn’t get the last question answered, but my friends did that for you.

Because I had company this week I ate differently than I usually do. The last couple days I had to do Tylenol. I am exhausted and am struggling with diarrhea today. The last thing I want to do is eat!!!

The information about tylenol is interesting. I take two tablets at a time which translates to 1200 mg. I try to do this only once a day. Sometimes I do it twice. Fortunately I don’t have to do that too often.

As some of you know I am scheduled for surgery, just don’t know when yet. We are waiting for the duct to dilate big enough to find it. So my question to you is:

Does anyone have any information or insight medically why a Puestow would be better that the TP/AIT? I know one of the big pluses would be the diabetes issue. I don’t have diabetes so that is important to me.

Thanks for your input.

Vonnie

#12

I would like to thank everyone for the information I have gained in the last hour. I just started taking Creon within the last couple of days. What I have experience is a bad bout of diarrhea. I am not sure if it is for me because of my work environment. Does anyone have any suggestions on how to counteract the diarrhea issue?