One patient with glioblastoma still alive nine years later
by Tisaacsjr on Tue Jan 01, 2013 09:04 PM
by FDoug on Wed Jan 02, 2013 02:32 AM
I had the whipple in June 2011 and have dealt with digestive problems and Creon ever since. I was prescribed Creon fairly soon after the operation. Your post refers to the number of capsules your wife takes, but the important thing is the UNT (strength) of the capsules as much as the number of capsules. I weigh 214 pounds. I started taking two 6000 UNT capsules before each meal and one 6000 UNT capsule before snacks. I was still experiencing diarrhea after a year and so I was boosted to 24000 UNT capsules (4 times as strong) and still took two capsules prior to meals and one capsule prior to snacks. The increased dosage helped immensely and I now have what passes (in this pancreatic cancer world anyway) as normal bowels. I do still sometimes get diarrhea. I increase the dosages even higher when traveling or when at an all day event of some kind so as to be SURE to avoid problems. I've found taking the capsules after a meal to be useless and I take them just before I am going to eat (like immediately before my first bite of food). I was told that constipation was the sign I was taking too much Creon. As I understand it, the weight loss is caused by malabsorption of food since the food doesn't remain in the digestive track long enough for the body to extract the energy it needs. I'm afraid Creaon takes a bit of experimentation to get it right and getting everything in balance depends on tablet strength, body weight, how much enzyme your body is producing naturally, and what you eat. I've given up bran cereal breakfasts. I increase doseage prior to a high fat snack (ice cream) or meal.
You're on the right track by seeking out info and best of luck to you in your caregiver role and prayers for your wife.
by CatherineAngus on Wed Jan 02, 2013 04:58 AM
Hello there, and all best wishes to you and your wife in your battle! My husband is in a similar situation, dx March 2012 age 49. Successful Whipple, but liver mets discovered immediately. Doctors' opinions has varied dramatically regarding Creon use. One oncologist even said not to bother! However, he takes approx 3-4 (45000 strength) Creon with an average sized main meal, and our naturopathic oncologist suggested up to as many as seven! With a snack he takes one or two. This higher strength means you don't need to take so many pills. But basically the overriding message we have received is that there is no harm in taking too many, so err on the side of more rather than less.
However, on the note of absorption of fats etc, perhaps your wife should consider taking some supplements that will aid general digestion. My husband takes priobiotics (brand name Inner Health) first thing (before any other food) and two supplements called Intestamine and Gastrocare (we are in Australia - so am unsure what the equivalent is in the US). But both should help with absorption of nutrients and lead to better bowel movements. Good luck, happy new year, and don't give up hope, this CAN be beaten :) PS Feel free to PM me if you want any more info. Catherine
by Tisaacsjr on Wed Jan 02, 2013 11:27 AM
Thank you for the thoughts on this issue we're having. Her Creon capsules are 24000 Lipase and 76000 Protease. I don't see UNT on the bottle. Our oncologist said these were the only strength they prescribe. My wife did start with one capsule before, one after, and we've now grown to 3 before and 2 after. It still does not seem to the right combination.
I heard from someone else on this subject who takes capsules before, during and after. We're going to try that too. It sounds as you're doing well nearly two years post whipple - prayers for you too.
by shelby1 on Wed Jan 02, 2013 02:24 PM
My husband takes one before, one during and one after each meal. and one at night for snacks- 24Keach. Most important thing in any event is what he eats. NO fried foods at all. When he eats fatty foods like maybe lean hamburger or salami he never eats them the same day. Look up CREON manufacturer for dosage infomation, we did and found out how much he can really take as it is based on weight. We taught our doctor because he thought that the situation would not change and he was wrong. My husband takes 10 a day total and finally no problems. We found the one at night to be the best thing we did. Good luck!
by Tisaacsjr on Wed Jan 02, 2013 03:47 PM
by shelby1 on Thu Jan 03, 2013 02:56 PM
Sounds like maybe too much Creon. I' would try a bland diet for two days and see what happens. I really think that's way too much Creon. We do a banana every day plus we're really careful about fatty foods.
by Pendeta on Wed Feb 13, 2013 03:13 AM
I will post my experience to help anyone else coming in reading this thread.
I had a whipple operation back in '93 at age 35 (was that doctor's youngest whipple patient at the time).
I have been using creon mostly for the past 20 years. I have gone to other generics (due to insurance plans, etc.). Creon has always been the best for me and I have been able to level out to a fairly regular schedule/lifestyle once regulated properly.
Creon is alway compared by the first primary what they call active ingredient - Lipase) even though there are technically protease and amylase. All 3 are the main ingredients/units, etc.
I started out with Creon 12,500 L back in 1993. I was even encourage to go without any enzymes and or H2 Blockers (acid pump blockers) initially.
Well that didn't work at all during the first 3 months of post operation. I wasn't getting any energy, couldn't gain weight, had constant craps/diarrhea, etc.
So, i went on to taking the creon 10 back then 12, 500 L units. Worked well once i figured out the correct numbers back then. Really didn't have to take as much as CF patients (Cystic Fibrosis). I basically started out with 2 at each meal and one at snacks. This worked well for years... changed to other generics but had more gas, bloating and oil slicks in the john when using other generics.
Some did fine however but creon has always seemed to be the cadilac and i can take less then other generics with less side affects.
A few years back my insurance plan would only allow the creon 24 as it was the only FDA approved at the time (all enzymes were put into more rigerous approvals at that time).
I have found over the years and to confirm what others have stated it is best to have both sizes Creon 24 and and the smaller 12, 500 for mixing. I have had to increase my amount just a tad over the last 5 years and have been using creon 24 primarily but I am about to order the smaller ones again since they are now available again and mix.
Also, my experience has been to alway take an H2 blocker as well as it helps the efficacy of the enzymes requiring less. I am on one omeprezole a day. Started out originally with other H2 blockers 2x a day one in am and one at night. Now i take only one a day as my stomach doesn't produce as much acid as it used to.
You can read on the internet and talk to GI doctors that are in the know and they will suggest taking a H2 blocker as well.
Also, it never has helped to take them late or after the meal. Best to take them with the meal. If you run out and are at a restaraunt it doesn't work to take them 30-45 min later. You are wasting your money if you take them after the meal in my opinion.
So I will likely take only about 1 24 per each meal unless it is a big meal like thanksgiving etc then i am about double the amount due to eating all day and still have issues the next day at times.
I stay away from fried fish as that has always been the worst food for me to ever eat and any other greasy, fatty foods, some hamburgers are worse than others.
I will now be taking 1 small one when i snack...
Hope this helps and it is a balancing act that is a bit different for each person, meal, portion size, etc. I do vary amount at times depending on what i eat, etc.
God Bless you all
by Tisaacsjr on Wed Feb 13, 2013 03:24 AM
by Pendeta on Wed Feb 13, 2013 03:46 AM
On Feb 13, 2013 3:24 AM Tisaacsjr wrote: Thank you for this very comprehensive explanation. We have been having significant issues and finally found out that the issue wasn't the amount of Creon but rather an issue of blocked bile ducts and some other related blockages. My wife had been taking 5 24's at dinner but now that she has had the blockages addressed she's back to 2 at dinner a d 1 with snacks.
It's wonderful to hear that all else seems to be well with your health. 20 years! I hope it continues for another 20 or more.
On Feb 13, 2013 3:24 AM Tisaacsjr wrote:
You're welcome! Yeah it sounded like she may be taking a lot (at least far more than me). I wasn't sure why but know it can be different for each person.
Glad to hear she is getting a handle on it now.
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