Gastrectomy - competent pancreas?

Hi

I suffer from pancreatic cancer and subsequently have to take Creon (a pancreatic enzyme).

When it was first prescribed I was told than if I struggled to swallow the capsule I should empty the contents of a capsule onto a forkful of food. Is that an option?

Hope you find a solution

Tricia

Tricia,

Creon didn't work for me, but I had granules, not capsules. However, I think that even the granules inside the capsules are protective coated. I have contacted Abbot (suppliers of Creon) to find out, but no reply so far. But, thanks for your help and good wishes.

David

Hi David. I also had a total gastrectomy 5 1/2 months ago. I am also on Creon although I am still having diarrhoea. It's strange because I may not have it for about a week and then I will suffer badly for about 3days especially in a morning. I went for a check up on Tuesday and the consultant suggested increasing my Creon from 3 tabs before food to 6 tabs. With the drink needed to swallow them I will be full before my meal starts. Ha ha. Don't fancy sprinkling them on my food. On my good days I feel relatively ok but on the days when I have the diarrhoea I feel so tired. My husband keeps reminding me that its still early days  but I just find the fatigue so frustrating. I have also lost a lot of weight. Hope you get sorted soon and thanks for the information. Take care.

Donna

Hi Donna

I take Creon too and still suffer from diarrhoea occasionally. but it's under control for much of the time. The instructions I received are a little different ...

If I have a drink I have one capsule with the drink. When I eat, the number of capsules I have depends on what I am eating - higher fat content on my plate means more capsules...maybe 6 (or more) but a low fat meal maybe 2 or 3.

I don't take the capsules before my meal either - I was advised to have a bit of food, then a capsule. a few more mouthfuls then another capsule and so on throughout the meal - this is so the food and the enzymes work together.

Might be worth a try?

Take care

Tricia x

Donna, Tricia,

Thanks again for your comments & good wishes. I have never had diarrhoea - I have the opposite and have to take lactulose to avoid the need for dynamite. Someone once said that the gut is as complex as the brain - just as idiosyncratic too!  I have some more information from the manufacturers of Pancrex V (see https://www.medicines.org.uk/emc/medicine/1412).  The powder is not enteric coated - just freeze dried pig pancreatic enzymes. So, we'll see if it works.

David

More info from Essential Pharmaceuticals Ltd....composition and details on Pancrex V powder can be found here -http://www.mhra.gov.uk/home/groups/spcpil/documents/spcpil/con1452145652298.pdf

Hi Tricia. Thanks for the advice. I will try that.

Donna x

Hey.  Do you have an update on the Pancrex V Powder ?

I had rny for peptic ulcer so I still have 80% of my stomach but creon not seeming to make difference.

Best,

D

I'm no expert, but if you have 80% of your stomach intact, you should not need pancreatic enzyme supplementation.  Those of us with a total gastrectomy and a roux-en-Y anastomosis have an unnatural connection between the pancreatic duct and the small bowel, so that it might not work optimally.  Add to that the fact that the food delivered direct to the jejunum has limited time and space for digestion and absorption, hence the possible need to give the pancreas some help.  The only objective test of pancreatic competence is faecal elastase measurement by immunoassay and this, according to my consultant, is not perfect, in that it can give false negatives. In any case I have now given up on both Creon and Pancreatin V.  You have to take rather large amounts for efficacy and it made me feel sick most of the time and made me vomit occasionally.  Now I just use whey protein (50g/day) to boost my protein intake and MCTs (mid-chain triglycerides - fats that don't need digestion for absorption) and as much sugar as I can handle.  Seems to work. I'm not losing weight and my HbA1c measurement tell me that I'm not developing diabetes.  So, perhaps I have limited pancreatic function, but pragmatically I think I'm managing.  Hope this helps.

Dear David,

I have spent this morning reading through your posts on the forum. Let me say that your notes helped me understand a lot of things, so my kind regards for making this kind of content available here on this forum. I hope you are doing fine.

Like yourself my husband also has no stomach and is missing half esophagus.

He has been losing weight regulary since he has been released from the hospital and also complains about fatigue. He is eating quite a bit but, even with so many calories the weight just keeps dropping. He has recently been offered Creon to try to see if this will make a difference and they will test his stool these days as well. (I am quite worried that putting any weight back on will be a real challange. Touching him and feeling this ribs is makes me very sad. I also feel that he is losing precious muscle tone.)

Let me say that since his operation we are seriously struggling to find medical professionals who can say something about the forms of medication they perscripe. They give these pills but then what happens if you dont have a stomach?.. My husband also asked this question to the doctor perscribing the Creon and nada..

Then when you ask too many questions they are annoyed and kind of retaliate..

Anyhow, I would greatly appreciate to know about your experiece so far based that you are quite far out from your operation and also whether you have heard from Abott about your query.

It would help a lot to know what you are eating on a daily basis and how you manage your overall health?..

We are both quite young, both engineers that our minds wont stop racing, looking forward to start a family, go back to a normal routine. My husband thinks everyday how he can go back to work with all these constraints around the task of eating frequently. He has downgraded in a moment from being an executive with a hectic schedule to a professional pill popper and snack eater. 

We are grateful that the cancer is gone but boy it is heavy to take onto execute the role of your stomach by yourself 24hrs.

all the best,

oyita