Enzymes

Pancreatitis
#1

I was wondering if anyone is this group is currently taking pancreatic enzymes, what kind, and if you have seen any success or change? I am currently taking Lipase and they do not seem to do much of anything so I am searching for other options. I remember having some success with pancreatic enzymes when I was a child however, I have not been able to find that same success lately with them. My doctor has decided to only have me take them when I am eating a great deal of protein however, I am still having digestive problems majority of the time so I thought I would ask for some advice. I have hereditary pancreatitis and I am 25, I was diagnosed when I was 2 at Mayo Clinic and recently had the genetic testing to confirm this diagnosis that was done 23 years ago before the actually gene was identified. I look forward to hearing any thoughts or suggestions that you may have.

Thanks,
Lindsey

#2

Lindsey: I have tried a number of different enzymes. Creon 20 worked pretty well, but gave me terrible gas. I now take Viokase. I also take Nexium, which one doctor said was important to take with Viokase. I’m not sure why. I think it has something to do with the coating of the enzyme. Others on this site are much more knowledgeable and can probably help you more. Good luck and I hope that you find an enzyme that give you some relief! Ellen

#3

Thank you for your kind words as you know having a pancreas disease is always a battle and often times it is an uphill battle. I plan to continue to educate myself and look for options as all of us have to do when battling a disease like this. Thanks again for your comments and best wishes.

Lindsey

#4

welcome lindsey,
you will soon come to find the many caring ppl here at careplace . to answer your question i can only speak for myself about the enzymes i too only took the pills during meals 8 per meal and 8 per snack. my problems are just not with foods so it did not help me much. i have pains all the time in my belly and back . i do know many have had relief from the enzymes tho. all i know to ease your pain is pain meds which is what i am taking and some days i take many to get me through the flare. do you take pain meds?. this may be your only hope if you suffer much. hope this helps, im sure you will get many responses from the caring ppl at careplace what a perfect true name for this site. have a better day then yesterday nancy

To: nancyoct211990@msn.com> From: pancreatitis-cpt7468@lists.careplace.com> Subject: [pancreatitis] Enzymes> Date: Mon, 14 Jan 2008 21:51:00 -0600> >

#5

Thank you for your reply nancy. Enzymes used to work for me until around age 18 or so and then they started not to work so well anymore. Since then my doctor has tried different kinds, diet, and at sometimes no enzymes at all. I do take pain medication for my pain but still suffer from ongoing digestive problems. I constantly battle dehydration and keeping my electrolytes up due to the digestive problems. At this point my doctor is wondering if enzymes will help this at all or if this is simply due to the deteriation of my pancrease after 25 years of hereditary pancreatitis. Thanks for your input and thoughts I really appreciate your response.

Take care,
Lindsey

#6

im not sure if thats the reason why they no longer work ( due to exstensive damage) i have my problems due to undetected stones in my bile duct which in turn blockd the pancreas never been the same since i feel for you in that you had to endure this for your entire life omg how awful, i have only battleing this for 2 yrs and it has drained me both physically and mentally im always trying something new in hopes something will work or my body will kick in and start to do what it should. my prayers are with you and hope that there is light at the end of this tunnel foreveryone who suffers this dreadful disease. your friend in the south nancy

To: nancyoct211990@msn.com> From: pancreatitis-cpt7468@lists.careplace.com> Subject: Re: [pancreatitis] Enzymes> Date: Tue, 15 Jan 2008 09:57:58 -0600> >

#7

I have tried Creon before and it only helped for a few months and I had the same problem with it as you did. I however, have not tried Viokase and another person at careplace sent me a private message recommending Viokase as well but, she did not mention anything about Nexium. I plan to speak with my doctor about Viokase and now Nexium at my next visit with her in about a month and see what she thinks. Maybe I can try this medication and hopefully it will help. It is hard to deal with the digestive side of pancreatitis since it is so unpredictable. Thank you for your suggestion I really appreciate it and will speak with my doctor about it. I have only been a member a few days and already I have learned some and met some really great people.

Take Care,
Lindsey

#8

I am usually a bystander in this list since, thank goodness, I appear to be in better shape than most of you. I had chronic pancreatitis for 21 years until it was diagnosed at Hopkins 6 years ago. I cannot take the prescription enzymes because I am allergic to pork which is what they are all made from. However, I do take vegetarian enzymes with all meals. I found them at www.koshervitamins.com. I went for a week without them to see if it would make a difference and it did. After a week I was back to them and somewhat improved. I still have constant pain but not so severe that I have to take a lot of pain meds – yet, but I know that will come in time. Hang in there and good luck.

nancy613 pancreatitis-cpt7468@lists.careplace.com wrote:

#9

Thank you for your suggestion I appreciate it. Since I posted this questions I have heard good things about Viokase both through the post and through private messages. I plan to speak to my doctor about this and then go from there. I will keep the vegitarian enzymes in mind as well and see what my doctor thinks the best option is since I can take regular enzymes. I appreciate everyone’s support with this question and please let me know if you have any other suggestions. Since I have had hereditary pancreatitis my entire life I have learned when you have a rare, misdiagnosable, unresearched disease that you have to be an advocate for yourself and learn as much as you can and then go fight for it. I appreciate everyone’s help in strengthing my fight.

Best wishes,
Lindsey

#10

Hi Lindsy I take enzymes pangestyme 6-meals 4-snacks they have gone up and up the last 4 yrs I could not live without them I would lose weight like it’s goin out of style in my case it helps with pain also I guess it keeps the pancreas from getting to inflamed I hope you have better and better days take care of yourself.

#11

Hello mike12, I wanted to send you a quick note on two things…First GB surgery I had mine done by lazer and it was aweful I will not tell you the detail because it will do know good only put fear into your decision! We all have different oppions and different outcomes of surgery, but if this will help you then read all your pre-surgical paperwork throughly. And secondly as for the enzymes I take the same prescription (pangestyme), my IM doctor told me to up the dose to 15-20 per day, I was only taking maybe 6 daily thought it didn’t make a difference, wow was I wrong!!! It has help me with the pain and the digestion of fat in my diet! The only thing that bothers me is my insurance company will not pay for them and the large amt. perscribed? I have been trying to find out the company who makes them, because they will sometimes send you your pres. free of charge, but the company name or manufactor is not on line or even in the directors for state info. that is frustrating to me, but I continue to take them money or no money! Welcome to the group, you will love it here, everyone is so caring and supportive here…Ok I hope your having a pain free evening and a great tomorrow :slight_smile: Big Hugs to YOU, Mrs Barb AKA/Barb :slight_smile:

#12

I posted this in another message but will post here just in case. I’ve tried various forms of enzymes (viokase and panokase are the two I remember off the top of my head) with no help at all. I’ve since been taking codeine and it’s the only thing that allows me to digest food. It might be an extreme measure, but when we were at the end of our (errr, my) rope and grasping at straws, it worked.

#13

Ken, or anyone else–have you tried the vegetarian enzymes that are available in the health food stores? I wonder how those would help.

#14

Susie-Q

I did try the vegeterian enzymes prior to Creon and I got no relief at all, but I was not taking very many. I currently take 3 Creon 20 if I eat anything (which these days is almost never). Try them and see, it can’t hurt. Enzymes are not absorbed into the bloodstream so even if you take more than necessary, there really is no downside or side effect. With the Creon, my previous GI told me to just keep taking more until I am pain free and that is how many I need. (My current GI doesn’t necessarily agree because you can max out on Lipase but 3 seems to be OK).

Good luck

Teresa