How many of you have been prescribed Creon and what were the results? Side effects?

[Will2014]

I've just been prescribed Creon 36,000 mg with meals because of a lack of production in pancreatic enzymes. In other words, my malabsorption is being magnified too much because I lack the enzymes necessary to break down proteins, lipids, and carbs. Has anyone been on Creon? How'd it work for you? Any nasty side effects? Give me the scoop folks!

 

[hilary1617]

Background: I was prescribed Creon, not in relation to DS, but in relation to a distal pancreatectomy / liver resection post-DS due to cancer eight months later. At the time I started Creon, I had achieved my desired weight loss from DS, but the additional loss of much of my pancreas was causing me to lose about a pound a day. The Creon effectively stabilized my weight.

I had my gall bladder removed with the second surgery, which led to the complication of bile salt diarrhea, so I was also prescribed Welchol (which worked well for that issue). I think that Creon *may* have also contributed to the very acidic and painful nature of my bowel movements.

It's a bit hard to isolate the side effects. That said, I was on Creon for about 18 months, if memory serves. During my time on Creon, I had issues with gassiness and diarrhea, especially if I ate any grains. Once I stopped Creon, this abated. I also stopped Welchol and the burn effect was gone.

I still have nutritional issues and may return to Creon if needed, but I wanted to give my pancreatic remnant the challenge. I figured it would never develop new production capabilities (to take over for the missing half) if it didn't need to do. I didn't want to develop a lifelong dependency on Creon if it was possible for my body to recover that capacity.

So, Creon worked very well at keeping weight stable and likely caused some gastrointestinal discomfort.

 

[Larra]

@Will2014 it may be that your pancreas is working just fine, but because you have the DS your pancreatic digestive enzymes don't meet up with your food until they all reach the common channel. For some people, this doesn't leave enough contact time for much absorption. I've met a few people with this problem post-op, usually temporary, who took Creon and benefited greatly from it. They were usually able to stop the Creon after a few months, which indicates, again, that the issue isn't some kind of pancreatic malfunction or inadequate function, but rather, the adjustment required for the common channel to be adequate for their absorption needs.
So hopefully this will be a temporary measure for you. Since I never needed Creon I can't speak from personal experience. And interestingly, the people that I know personally who needed Creon were all guys.

 

[DSRIGGS]

FYI - I posted in the other thread where Will and I were discussing. My PC is having issues so I am on my phone and can't really copy well.

One thing I was going to add was that last week while out getting Cameron fixed up with Dr K, he and I talked about my malabsorbtion. He told me to give to 2 years at a minimum before considering lengthening the channel. He said if that was necessary he would take it from 100cm to 150cm as the science says you add 50% of the original if malabsorbtion is happening. We shall see.

BTW he said it is not a problem to be on CREon forever if you stay compliant..well that "ain't hattnin" so we will give it another 4 months or so.

 

[Will2014]

FYI - I posted in the other thread where Will and I were discussing. My PC is having issues so I am on my phone and can't really copy well.

One thing I was going to add was that last week while out getting Cameron fixed up with Dr K, he and I talked about my malabsorbtion. He told me to give to 2 years at a minimum before considering lengthening the channel. He said if that was necessary he would take it from 100cm to 150cm as the science says you add 50% of the original if malabsorbtion is happening. We shall see.

BTW he said it is not a problem to be on CREon forever if you stay compliant..well that "ain't hattnin" so we will give it another 4 months or so.

Thanks Laura, Hilary, and DSRiggs! Laura I do hope my common channel of 110cm will be ok over the long haul, and that I won't need Creon forever. I'm now 13 1/2 months post op....does the CC change over time-improve it's ability to absorb? Riggs I was wondering if your gall bladder was removed? I was wondering if that was where your "burning butt" problem stemmed from...the bile salts. Today was my 1st time taking the Creon. I took it this am and with dinner tonight. No side effects at all yet....I'll keep you posted!

 

[DSRIGGS]

Thanks Laura, Hilary, and DSRiggs! Laura I do hope my common channel of 110cm will be ok over the long haul, and that I won't need Creon forever. I'm now 13 1/2 months post op....does the CC change over time-improve it's ability to absorb? Riggs I was wondering if your gall bladder was removed? I was wondering if that was where your "burning butt" problem stemmed from...the bile salts. Today was my 1st time taking the Creon. I took it this am and with dinner tonight. No side effects at all yet....I'll keep you posted!

Will, my gallbladder was removed almost 3 years before the DS. I am sure it is contributing as I do get bile salt D, but the burning only started a few weeks after the CREon started and ramped up....nothing the previous 13 months post ds.