@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.