Pancreatic Disorders Group: Introduce yourself and connect with others

@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.

I'm tagging @yvonnecappe @shezza51 @kristiefisher @sdave @tls @crystallynn1976 @howboy @irr4et @dianehrdr @mercellort @normfairfield @crickard70 @korazon99 @nonnie9153 @tra418 @sarah60 @ladyaceintx1 @tslayden @cherawgirl @rozy288 @geegeebabe @ericawiersfischer @gravity3 @1realjeannie @jacquie415 @moodysgoose @sb4ca @bebold @speedbird @harper7745 @roseb39 @araman @chrioli @judypville @fpc3 @tigreyes2004 @thefam2016 @jkarmazin @creondave @rashida @mjemjm @musicbart @cheyne @geri1 @watcl3355 @warrior09 @renocmh to get the new Pancreatic Disorders support group started.

You've all mentioned the pancreas or a pancreatic disorder previously that you have personally experienced or witnessed in someone you know, such as:

-Pancreatitis
-Pancreatic abscess
-Cystic fibrosis
-Pancreatic cyst or pseudocyst
-Pancreatic trauma
-Exocrine pancreatic insufficiency (EPI)
-Pancreas divisum
-Annular pancreas
-Pancreatic serous cystadenoma
-Intraductal papillary mucinous neoplasm (IPMN)
-Mucinous cystic neoplasms
-Solid pseudopapillary neoplasms
-Insulinoma
-Pancreatic intraepithelial neoplasia (PanIN)
-Pancreatic fluid collection or acute peripancreatic fluid collection(APFC)
-Walled-off pancreatic necrosis(WON)
-Hemosuccus pancreaticus

What symptoms are you or your loved one experiencing? If you or someone you know has a diagnosed pancreatic disorder, what treatments have you or they had? Do you have any input or suggestions for new members?

@cherawgirl
Bile Acid Malabsorption is an interesting side effect of gallbladder removal. Could you provide more information about what symptoms led to that diagnosis, as well as what types of tests were used to confirm the diagnosis?

How are you feeling now? Is there medication that you take?

@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!)?

@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?

@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
Thanks for taking this on. My problems seem minor compared to those who have responded so far. I am a 72 year old male with IBS for 55 years and diabetes for nearly 40 years. Although not related, I have extensive arthritis and have had cervical spinal surgery with fusions. I am also retired military with service in Desert Storm/Desert Shield and service on an Air Force base with nuclear weapons. I certainly have been exposed to the chemicals recently admitted to by the Defense Department for many bases — in fact, every base I served at is on the list. I have thyroid tumors (benign), but thyroid numbers are fine.

Pancreatic issues: diagnosed with acute pancreatitis during ED visit for various issues. Also diagnosed with Long Covid during the same visit and was told the pancreatitis was most likely caused by the Long Covid. I have never used alcohol or any illegal drugs. I have had Covid at least three times. At one point my primary doctor was ready to diagnose both endocrine insufficiency and exocrine insufficiency. Recent testing by the endocrine doctor shows the pancreas is performing its endo responsibilities to some extent. There has been no testing recently for the exocrine responsibilities. I take OTC digestive enzymes for the pancreatic issues and the primary is satisfied with my responses to those enzymes. I was told to eliminate beef, pork, and lamb from my diet after the pancreatitis diagnosis. I eliminated all three, but added lean pork back since it did not seem to bother me during a two-week test. I use daily fiber supplements (Citrucel) for the IBS which is well managed. In the last year I have reduced my A1C from 8.4 to 6.1 and by Dexcom G7 shows I am in the preferred zone (70 - 180) between 80 and 85 percent of the time. Both the primary and endo docs are satisfied with that. I occasionally hit the upper 80s and low 90s percentiles for being in the zone.

I despise the lack of variety in my diet (chicken, turkey, and occasional fish for protein). I am allergic to shellfish, so eating fish out is difficult. Because of the IBS, I can’t eat plant-based protein or beans or any green veggies for the most part. Bizarrely, I can eat lettuce and raw cabbage (think coleslaw), but not cooked cabbage. I can tolerate some of the meatless proteins. Because I am also lactose intolerant, I cannot eat foods enhanced with protein since most of them contain whey as the byproduct of cheese making. Whey has large amounts of lactose.

So, I look forward to seeing how this group progresses, but I am not sure how much I can contribute. I will if I can, though.

Frank

Hello @ericawiersfischer

I appreciate you sharing your remarkable journey here on Connect. First, let me congratulate you on persisting to find the correct diagnosis and treatment for this elusive problem. I so admire the way you were not dissuaded (especially by the NP who wanted to give you a psych referral) by misdiagnoses and that you continued to look for an answer actively.

I'm guessing that you must have lost a lot of weight during this process of finding an answer. Are you able to eat comfortably now? What type of foods are you able to eat?

@hopeful33250
Thank you! I encourage all to advocate for yourself, no one knows your body better. I knew something was wrong.

I had lost quite a bit of weight for a time, but other medications for my various other chronic conditions and I kept getting put on steroids because I had anaphylaxis from so many meds they tried. I have a genetic issue with medications. So, right now I am about 20 lbs over and trying to lose weight. Since surgery though I have been losing weight as my appetite has decreased and I eat small meals more often as tolerated. I have always kept to low fat unprocessed whole foods. I cook from scratch and became gluten-free due to it causes blisters on my tongue and throat and more gasto issues. I have consulted with nutrition many times over the years. and I would suggest that to you if you need help. They taught me how to try to get the vitamins and minerals that I have problems absorbing by eating the right foods or combinations of foods. I also had my vitamins and minerals tested and they check them yearly. I do of course take many supplements too. As always check with your provider before you make changes to your diet including vitamins and minerals supplementation. My body keeps E for some crazy reason, so my multi needs to have no or low E. Magnesium doesn't stay in me at all, I take 1000mg a day and am still borderline. I hope you find what works for you soon. I will be praying for you.