Pancreatic Disorders Group: Introduce yourself and connect with others

Hello @tls, and welcome to this new support group for those of us who have pancreatic disorders. You certainly have had an extensive surgery this year. You mentioned that you are now dealing with gastroparesis.

While I've not had pancreatic surgery, I have had three surgeries of the upper digestive tract, including gall bladder removal during one of the surgeries, and I certainly understand what it means to have slow motility.

As your surgery was extensive, I would encourage you also to join a discussion group called,
How Do I Eat After Digestive Tract Surgery? Here is the link to that group:
https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/
What are the most difficult symptoms that you deal with post-surgery?

I don’t think I’ve had any side effects from it. I will see my NP soon and I’ll talk to her about it. However I didn’t know I had EPI until a test was done so I imagine she will re-do the test to see what it looks like. I had gastric bypass (roue-n-y) in 2018 and I think many bypass patients have digestive problems like chronic diarrhea.

@sb4ca - so were the dilated duct with 3 IPMNs and the really enlarged common bile duct discovered during imaging for something else, or how were these discovered if you are not symptomatic (thank goodness for you, though!)?

@lisalucier
My name is Mercedes
Since 2010 I started having all sorts of GI issues, maldigestion, constipation, HPylori, gastritis, etc. 2020 was especially hard, couln't eat anything, pain, bloating, feeling really sick, hig blood preassure spikes, irregular hart beats. 2021 I went to Cleveland Clinic in FL. I was diagnosed with atrophic pancreas with multiple cysts and EPI.
In Cleveland Clinic, Miami, the gastroenterologist I saw, was rude and no help at all, after he diagnosed me with an atrophic pancreas. I asked him what do I do, he said: "come back in 6 months, you will either have cronic pancreatitis (which I think you already do), cancer or diabetes, then we'll know the treatment". After that horrible experience, I went to Mayo Clinic, the gastroenterologist was very nice, but still no help, no treatment. When I ask him for pancreatic enzimes, he wanted me to take a test, the preparation was not aceptable to me, I new I can not digest fat: I had to eat enormous amounts of bacon, sausage, butter. Neither gastroenterologist seem to understand my health problems.
Finally I went to the Functional medicine Department, Cleveland Clinic, Ohio. They did a comprehensive GI test (Genova Lab) and they tested me for mold. First they treated me for all my GI problems, detoxed me from mold toxins and gave me a comprehensive diet. They also prescribe OTC pancreatic enzimes and I have felt they saved my life. I get and MRI every year and still face GI issues but my quslity of life has improved. I sympathize with all the strugles and health problems I read in this group

@hopeful33250

2025 was my 5th year of MRIs without change. The only change I had was my EPI being lower. I have gone from 188 to 160.
Thank you for your hopeful message

Wow! I didn't know that the EPI condition could improve. Great news for you and wonderful information for me. Thanks so much
j18

@j18

No, my EPI has not improved, started at 188 and my last test showed 160, is lower, and I can feel it. I need higher dose of enzimes.

So sorry. I'm unfamiliar with the numbers as yet. How often do you test? Which medication do you take?
Feel better.

@mercellort - hoping as @j18 mentioned, you can talk more about the testing process you undergo and what the various numbers from the testing mean. Will you also share what medication you take?

@lisalucier
Hello All! My name is Erica.
I have been dealing with Idiopathic chronic pancreatitis since at least 1998. I randomly get extreme nausea, ULQ pain with or without vomiting and it took me until 2021 to get a diagnosis. I had many scans, but they narrowed it down to when the damage started to 2015. I had a scan 2014 that didn't show damage, and then 2018 it starts to be visible on scans. I know that in 2015 I was horrendously ill. I had recurrent attacks, but no one was looking at my pancreas because I don't drink I don't smoke and I don't have any other telltale factors. I was actually working at a GI office at the time of diagnosis. I started in 2020, I complained that I was having pain, but it was right mid quadrant and the PA told me I was just sitting funny and should try to improve my posture. I started having really bad symptoms that just became constant and I started losing a lot of weight because I couldn't eat without getting sick. My bloodwork always came back normal, so they just said I was fine. I kept pursuing answers. The NP at my PCP office told me he was going to send a referral to psych. I walked out and said some unkind words because it was not in my head. I literally had hematuria the very next day which landed me in the ER and sent directly for a cystoscopy. When the urologist found nothing he sent me for an abdominal CT scan which lo and behold showed significant damage and a stone with a severe stricture in my main pancreatic duct and dilatation at the point of genu. I was sent immediately for a EUS as they suspected pancreatic cancer. I ened up with my first bout of iatrogenic pancreatitis and was hospitalized 5 days. The biopsies always came back inconclusive. I began ERCP's which during the first one it took 3 GI doctors to get the smallest stent in and that is how they discovered I had an Ansa Loop. I didn't tolerate the stenting, had 7 before I said absolutely no more. I couldn't keep them long enough, I ended up with iotrogenic pancreatitis every single time and had to stay at least 2-3 overnights each time, and just caused more damage. I tried celiac plexus block which actually made my pain so bad I couldn't work for 9 months. They tried another celiac plexus block 2 weeks after the first one and they called an apniac code, which means I wasn't breathing for more than 20 seconds and I spent a night in the hospital. I then tried a splanchnicectomy, splanic nerve block, nothing worked. I then had my perfectly fine gallbladder removed because I don't think they knew what they were doing. Then a very well known GI surgeon at Anschutz in Colorado held a 25 specialist clinic and they recommended removing my pancreas, my spleen, my appendix, and a hysterectomy because I had fibrroids on my ovaries that were over 7 cm bilaterally and I might have cancer. My original GI said woah, no. She referred me to Mayo Clinic Rochester. Here they said they had only seen 2 others with similar issues and they wanted to try gabapentin. I also met with a surgeon who assured me I would probably never need surgery. I tried gabapentin which I have an allergy/intolerance list of 42, and this is one of them. My GI at Mayo insisted that I try to stay on it, so from June 2024 to Feb 2025 I tried, couldn't advance in dosage after 600mg 3x/day. This med made me so hyper I almost lost my job because I couldn't concentrate. I finally said I am done. I also had voiced concerns that if it was masking my abdominal pain wasn't it going to cause more damage and I just won't feel it? I was told that shouldn't be an issue. As soon as I titrated off gabapentin I was in the hospital again for another attack of pancreatitis. I was getting what they called acute on chronic pancreatitis. I was in the hospital for 5 days. I consulted with the GI team again and he wanted me to try ERCP's again, I refused. They scheduled an ESWL but when I arrived it was set as an ERCP. I spoke with the physician and after I explained that I am not doing an ERCP and my experiences he agreed that surgery was the next step. I again met with the surgeon who told me I needed surgery ASAP, July 3rd 2025. I was scheduled Aug 28. He said I needed to not have any more attacks before surgery because he said he wouldn't be able to do surgery if it was actively inflamed. I was hospitalized the following Monday for another 5 days. He then said he would still do surgery. I had a Total Distal Pancreatectomy and Splenectomy on August 28th. The pancreas was inflamed at the time of surgery. It started as robotic assisted, then laproscopic, and I ended with open surgery. He said the body and tail were loaded with stones, that he couldn't see well due to inflammation and when he saw that there were stones past where he originally wanted to cut so to see better it ended up open. He also stated my pancreas was fibrous, hard and lumpy and that ERCP'S wouldn't have been helpful because there were so many stones, and my duct was way too narrow to pass them. My spleen was quite a bit bigger than they anticipated, the had thought it mildly enlarged, but he said it was big and was probably a cause of a lot of the pain because my abdomen is short and small so it was pressed in there and inflamed as well. I got to keep my appendix and didn't have a hysterectomy, so I am so grateful to Mayo for that. I feel so much better and I am only 8 weeks out from surgery. I am extremely fatigued and have not returned to work yet, so I will share later how it goes from here. I have learned a lot. I am currently not on PERT, I am now diabetic, but that constant ache on my upper left abdomen is not there! Dr. Thiels literally saved my life, I knew it was killing me slowly, and I am so grateful for his expertise.