1. < Pancreatic Cancer

Anyone have stomach aches from Creon or developed SIBO?

Posted by lilliejane2 @lilliejane2, Aug 12, 2023

Hi. Its Lilliejane2 again. I posted some good news about results of recent EUS, but I also have a question about ongoing abdominal discomfort and pain.
I have been having terrible pain and bloating in the entire abdomen, both upper and lower. It seems like it is SIBO
and have just begun being treated by a naturopath for it.
I have read that SIBO is common after abdominal surgery, and I was fortunate to have the Whipple 19 months ago. Things were basically ok until right after Christmas, when I got Covid, then 2 weeks after that started having terrible IBS symptoms. Then, about 2 months ago, a diagnosis of recurrent lyme disease.
I have been taking more creon for the last 2 months, and it seems that the intestinal and stomach pain may also be due to taking more Creon. It's a bit overwhelming, sorting through all this. Has anyone else experienced IBS/SIBO issues or Creon issues resulting in abdominal pain all day? Thank you so much for any thoughts.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

ajh5285 | @ajh5285 | Aug 12, 2023

Adjusting to Creon has been and can still be a real bear. Just when I think I've reached an even-keel something changes which winds up rocking the boat. I gather that each prescription grade batch of Creon is different since the generic package insert online always says to consult the package insult that came with the current bottle you're using. Sorry, I can't be any more helpful, but if you review the posts here you'll see that most people arrive at their current dosage by trial-and-error.
Yes, I would say that gas and bloating have been part of my Creon "journey." I've also discovered (again from reading here & other places online) that I've probably had splenic flexure syndrome with my my I B S for most of my adult life. This also results in gas trapping to the point that sometimes tapping on my belly is quite tympanic, clueing me in to where the gas pockets are. Passing "gas" afterwards usually relieves this phenomenon.
I still wonder how much gas it's WNL (within normal limits) to have, especially after eating and am attempting to chew food thoroughly (especially anything with a lot of carbs) and not to talk/swallow air when I'm eating.
Good luck! finding your solution.

REPLY
1 reply
ronjake | @ronjake | Aug 13, 2023

I started taking Creon about a month after my surgery (delayed as no one told me I needed it). My primary Dr. who by chance had the exact same procedure himself, prescribed it to me. Started at 2 1200 with each meal, but I had a hard time remembering to take it before eating. Got really good with breakfast, but because lunch and dinner were never the same time or even at home it was a challange remembering to take it. Once I finally trained my brain to take it regularly things got great. I also realized I only needed 1 pill with each meal. 3 1/2 years later it has spread to my liver and the stomach issues started coming back as well as yet another increase in blood sugar, seems it might be after what little pancreas I have left, but anyhow I am back taking 2 1200 pills with meals and things are almost back to normal. I will occasionally take a Gas-X after eating, which is almost immediate relief. Hopefully the Lanreotide injections will help control the spread of my cancer (2 shots in) and minimize any additional stomach issues. Fatty foods seem to be my biggest problem foods, but everyone's body is different for triggers.

REPLY
1 reply
lilliejane2 | @lilliejane2 | Aug 14, 2023
In reply to @ajh5285 "Adjusting to Creon has been and can still be a real bear. Just when I think..." + (show)
@ajh5285

Adjusting to Creon has been and can still be a real bear. Just when I think I've reached an even-keel something changes which winds up rocking the boat. I gather that each prescription grade batch of Creon is different since the generic package insert online always says to consult the package insult that came with the current bottle you're using. Sorry, I can't be any more helpful, but if you review the posts here you'll see that most people arrive at their current dosage by trial-and-error.
Yes, I would say that gas and bloating have been part of my Creon "journey." I've also discovered (again from reading here & other places online) that I've probably had splenic flexure syndrome with my my I B S for most of my adult life. This also results in gas trapping to the point that sometimes tapping on my belly is quite tympanic, clueing me in to where the gas pockets are. Passing "gas" afterwards usually relieves this phenomenon.
I still wonder how much gas it's WNL (within normal limits) to have, especially after eating and am attempting to chew food thoroughly (especially anything with a lot of carbs) and not to talk/swallow air when I'm eating.
Good luck! finding your solution.

Jump to this post

Hi. Thank you for your response.
I am having alot of trouble eating anything it seems, but particularly things high in fiber.
I believe I have SIBO
And try to follow a low FODMAP diet.
Things that I used to eat 3 months ago are off limits now, like lentils, coconut, broccoli, many vegetables. I lost 7 pounds in the last 6 weeks and am trying to put it back on.
It's been a struggle, all of this dietary stuff.
Am seeing a naturopath now to help with SIBO issues. I do find that GasX helps some, and maybe Beano before I eat. In addition, I have adhesions from my whipple surgery, which adds pain and discomfort to all of it. But the Whipple saved my life. And I am eternally grateful
To my surgeon. Now, 19 months post Whipple, still trying to find the right mix.
Best of luck to you with your own struggles.!

REPLY
lilliejane2 | @lilliejane2 | Aug 14, 2023
In reply to @ronjake "I started taking Creon about a month after my surgery (delayed as no one told me..." + (show)
@ronjake

I started taking Creon about a month after my surgery (delayed as no one told me I needed it). My primary Dr. who by chance had the exact same procedure himself, prescribed it to me. Started at 2 1200 with each meal, but I had a hard time remembering to take it before eating. Got really good with breakfast, but because lunch and dinner were never the same time or even at home it was a challange remembering to take it. Once I finally trained my brain to take it regularly things got great. I also realized I only needed 1 pill with each meal. 3 1/2 years later it has spread to my liver and the stomach issues started coming back as well as yet another increase in blood sugar, seems it might be after what little pancreas I have left, but anyhow I am back taking 2 1200 pills with meals and things are almost back to normal. I will occasionally take a Gas-X after eating, which is almost immediate relief. Hopefully the Lanreotide injections will help control the spread of my cancer (2 shots in) and minimize any additional stomach issues. Fatty foods seem to be my biggest problem foods, but everyone's body is different for triggers.

Jump to this post

Hello. First I want to tell you that I am sorry that you are going through a new set of worries. It seems the worries are always there, but I give so much credit for handling them courageously. I wonder if an ablation would be possible with your liver? I have a friend whose pancreatic cancer returned to her liver and was able to have an ablation and is now cancer free again.
About the Creon, I am currently taking 4 36000 with every meal, and 2 36000 with snacks. GasX does seem to help. I will try Beano also.
I mentioned that SIBO seems to be what's really complicating eating for me. I read that many people who have had the Whipple will develop SIBO. Am seeing a naturopath now for help with that. Adhesions from the Whipple complicate the matter. I feel that even with our struggles, we will be ok, and live long and beautiful lives. That is my wish for you, and it is my daily prayer. Be well.!

REPLY
Please sign in or register to post a reply.