Pancreatic Disorders Group: Introduce yourself and connect with others

@greeneyes67f
Glad you have no masses but understand your concern.

I recently had an MRI MRCP as I’m in a high risk for pancreatic cancer monitoring program due to the BRCA2 mutation. It showed my main pancreatic duct is 2.5 cm dilated (they are very concerned). There is a fuzzy spot that looks like it might be a cluster of cysts. I’m scheduled for an EUS Friday 2/6. My CA19-9 is normal at 11. My MRCP 2 years ago was normal and an abdominal CT one year ago was normal. I’ve been in treatment for two unrelated cancers for the past 5 years, recurrent breast cancer and neuroendocrine lung cancer. Lots of cancer in my family but no pancreatic so far. We’ll see how this turns out. 🙏

I am also happy to see this non-cancer pancreatic group and hope I don’t have to move to the cancer group.

@californiazebra

I recall that you were having an EUS on 2/6. How are you doing now?

@hopeful33250
Thanks for asking, Teresa. The EUS went well and my pancreas looks good. After thinking I had pancreatic cancer for 6 weeks with a seriously dilated duct, 5 minutes before the procedure I was told that was a typo on the MRI report. It was only mildly dilated. They knew 2.5 cm was in error early on and didn’t tell me even though I asked if it could be a typo. I really just needed another MRI in 6 months. Not happy about that but thrilled my pancreas is okay. I’m still in the high risk program because of BRCA2. That program is CA 19-9 every year and MRI MRCP and/or EUS every 2 years. Now I need to get back to scheduling ablations for afib and lung NETs issues I put on hold when I thought I had pancreatic cancer. My best to those of you currently battling pancreatic issues.

I was recently diagnosed with EPI after having digestive issues for the past several months. My score was 86 so that is considered severe EPI and I have just started taking Creon 36,000 dosage for a month and then my GI doctor will determine if it needs to be increased. Don’t know what the root of cause of this is since I never had pancreatitis, never smoked or drank excessive amounts of alcohol or had any of the other conditions mentioned for this diagnosis. I did have what I thought was food poisoning awhile ago so wondering if that might have caused the EPI. I also found out that I have pancreatic cysts and my GI doctor referred me to another GI for a endoscopic ultrasound. Since I never received a call back from that specialist, I called them to see why nothing has been scheduled, only to be told that my cysts are too small and don’t need this procedure at this time. All of this has made me anxious and stressed.

For those who take Creon - how do you determine how much to take with each meal? My GI doc prescribed two capsules with meals and one with snacks. I take the 36,000 unit capsules, weigh about 135, and I also have collagenous colitis so my symptoms overlap. My meals average about 450 calories and usually have a snack in the evenings that runs about 200 calories. I split the dose during meals - taking one at the start of the meal and one about halfway through. For several months my symptoms were controlled but over the last 6 months I have started having diarrhea again that does not appear to be related to anything. I was placed on a higher does of Budesonide, which briefly helped. I have contacted my GI for further instruction and in the interim am doing my own research - and wondering if I should try increasing my Creon dose. What has your experience been?

@tkkell1 Everyone...if you have EPI... an Elastase below 100 is considered severe. The amount of Creon or Zenpep is determined by your ideal weight and your amount of food you consume per meal. Don't over eat per meal. EPI means you cannot digest solid food properly. I am a lean 180# and the Creon chart said max. 200,000 lipase units per meal. If you weigh less you take less. If you are obviously overweight it's not easy to figure out the amount of pills. Most Drs. prescribe a significantly less amount when you start. Which leaves you in limbo of never feeling a 100% well. It is best to eat 4 small meals vs. 3 big American meals. And have the Dr. prescribe enough pills. My Dr. does and I feel excellent. It's silly if you are taking one 36,000 pill for a meal. That's a small child dosage. They did the same with me in the beginning. G.I.Dr. had no clue. I had to go to the Creon site and show them. I then changed my G.I. Dr. who then agreed with me.

@debhammel. Do not exceed 2,500 lipase units/kg/meal. Take your weight (w) divide by 2.2#/kg, multiply by 2500 lipase. EX: 180#person /2.2 x 2500= 204,545. this is the max. lipase dosage per meal. For all... If you are significantly overweight I suggest lowering the (w).

@ahnni

I appreciate you posting some more information. Has anyone suggested that you have a Whipple? If so, another opinion at Mayo Clinic would undoubtedly be appropriate. Here is a link with information for obtaining a Mayo Clinic consult.
http://mayocl.in/1mtmR63.