Do I have Pancreatitis?

@harper7745 Hi there. I don't usually answer questions outside of the group I mentor, but pancreatitis can be a very serious health issue; so I thought I'd step in and reply. Pancreatitis can lead to pancreatic cancer. I know that lifestyle changes can turn it around. If your current doctor cannot give you a clear diagnosis, maybe you need another opinion. I find that the better doctors are in medical teaching institutes. They tend to have more cutting edge equipment and cutting edge knowledge. For example I go only to Mayo Clinic for healthcare. There are other good options depending on where you live. The bottom line is, you HAVE to be your own best advocate. I would be interested in knowing how you are doing. I hope you will check back when you know more. Are you learning all that you can about pancreatitis?

Hi @harper7745 I wanted to join @windwalker in welcoming you to Connect.

I would like to tag fellow Connect members @claytamos, @dval and @pandaqty as they have all mentioned various forms of pancreatitis in the past and may be able to offer you support.

What is your doctor telling you right now? Also, as @windwalker asked, what all have you learned about pancreatitis?

Right now I have an appointment on Aug. 1st with an oncology surgeon. I had a EUS and FNA biopsy of pancreas. Results showed benign background with some atypical cells. My doc said I don't have cancer, but a specialist (because he works with various issues) may have more knowledge and be able to help. I have researched pancreatitis for the past 4 weeks and don't seem to have symptoms. That is why I am so confused.

I had an EUS with FNA and results showed benign background with some atypical cells. Doc said I don't have cancer, but he is sending me to an oncology surgeon Aug. 1st. He said since he has dealt with many issues he may be able to sort things out and give me some ideas. All my tests have shown mild pancreatitis, but I don't have the symptoms. My Lipase was a little elevated, but Amylase was always good. Have been dealing with this since April 1st. Went to ER thinking I was having a heart attack, because of the awful pain in chest, but heart was good. Then I went to my GI thinking it had to be digestive. Some days feel really good, but I am losing weight and tired. Again, I can be losing weight because I changed my diet so much.

I want to first say I'm not a doctor. I have chronic pancreatitis due to a botched ERCP. A normal lipase level is between 0-169 u/l. So if your lipase level is 104 u/l I'd say that's normal. The doctors here won't consider treating pancreatitis unless your lipase is 3 times the normal. I've read that is the norm. I've been told an MRI or EUS doesn't diagnose pancreatitis but diagnoses the possible cause if you have pancreatitis such as masses in the pancreas, stones or defects in the bile ducts. They also use those test to diagnose pancreatic cancer. I've never heard of Omeprazole as a treatment for pancreatitis, rather I believe that's for reflux/heartburn. There are long term side effects that can happen with reflux drugs so ask your doctor if you should change meds. Once side effect is loss of bone density. For my pancreatitis I take Creon. You asked if you have pancreatitis. Your doctor should be able to answer that. When you have a pancreatitis attack you know it. The pain, for me was in the upper right to center abdominal quadrant just under the bottom rib and radiated to the back and is excruciating. If you have this pain you should go to the ER so they can run the labs for pancreatitis and treat the pain. Pancreatitis can be dangerous. Be your own advocate, do your research and take care. Hope you feel better.

I have been on Omeprazole for acid reflux and Barrett's esophagus. I heard that Omeprazole can give you pancreatitis, actually on the Mayo clinic website. Have been on it for 13 years. My pain when I had it was in mid chest and upper rt. quad, more over the liver. My doctor said I have pancreatitis, but I don't think he is sure because he is sending me to the specialist.

Hello @harper7745

While I have not had a diagnosis of pancreatitis, I do have some other problems with the pancreas and have had several digestive tract surgeries for other problems. I can understand the concerns that you speak of in that you do not have a good understanding of why the doctor is suggesting that you have pancreatitis. If that correct?

I am glad to hear that you have an upcoming appointment with a specialist on Aug. 1. If you prepare for this appointment with a list of your questions and concerns this will help you. I am reminded of a post on Connect about how to approach an appointment with a new specialist and I thought that some of the ideas might be helpful to you. Here is the link, https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

After you read the post on this link, then start your own list of things to discuss with this new doctor. At the appointment, take each of your questions one at a time and make sure that he or she answers each question so that you understand what is being said. Remember, you are their patient and it is important that the medical team communicate with you so that you understand what is happening.

Many of us on Connect have had difficult and/or hard to diagnose medical problems and we have learned to be our own advocate in our health care. Take time to educate yourself on pancreatitis and have your questions answered by this new doctor.

Will you post again and let me know how you are doing with this process?

My pancreatitis was acute and “drug induced”. It was a direct result of the mesalamine I was taking for ulcerative colitis. It resolved within weeks of discontinuing the Rx. Unfortunately within days, I was in the worst UC flare, which became a nightmare, starting with both oral and rectal budesonide, oral prednisone, which I have just started to taper, in addition to the biologic, Entyvio. I have completed 2 of the 3 loading doses. I am hoping that this will work, or I am facing a total colectomy. We meet with the colorectal surgeon on Wednesday. In the meantime, the bathroom visits have decreased from 15 daily to 2-3 and bleeding has stopped. I also started a plant based diet, based on several things I have read about UC and Crohns and the good results people have had when they give up all animal products. Right now, I’m not sure if these positive changes are the prednisone, the Entyvio, the diet or the many, many prayers. I am just cautiously optimistic that something is working and there has been a remarkable improvement. I am once again able to leave the house and have stopped losing weight. I was losing a half pound a day and have been able to maintain 100 pounds. Sorry this is so long and not on the topic of pancreatitis, but that was my experience with it.... Anyone with ulcerative colitis that is in remission? Thanks and good luck to ALL of you!!

Hi @harper7745,

I'd sincerely encourage you to visit the Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ – an incredible resource for information, current therapies, clinical trials, etc; you can also browse through newsfeed posts from Mayo Clinic experts. For instance, in this video, Mayo Clinic gastroenterologist, Dr. Santhi Swaroop Vege M.D., shares how new treatment protocols for pancreatitis/pancreatic cancer are improving outcomes.
– Road to Early Diagnosis for Pancreatic Cancer https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/better-every-day-new-therapies-for-pancreatic-cancer/

I’m tagging @marvinjsturing @gaylea1 @destructiveforc as they might be able to share their insights and shed more light on your symptoms.

My pancreatitis was acute and “drug induced”, from the mesalamine I had been taking for ulcerative colitis. The symptoms were primarily pain on the left side that radiated upward; stool was lighter in color. When you have UC, you’re more aware of stool than anyone should ever have to be...lol. The pain was constant and became more noticeable after I ate. I contacted my GI doc after almost a week and the only test that confirmed the pancreatitis diagnosis was the bloodwork (lipase and amylase were elevated). Once I discontinued the mesalamine, it resolved within a week. Now I’m scrambling to get the UC back into remission and currently on Uceris (budesonide) which so far is not helping. A few years ago, my husband had pancreatitis from gall stones and that pain was excruciating, left side right through to the back. He couldn’t even stand up. A trip to the ER and an emergency cholecystectomy followed. He has had no issues since. We too have never smoked, do not drink alcohol, walk 5 miles a day and have always been in excellent health. This ulcerative colitis has been a nightmare and I am terrified of the biologics, but living like this sucks. Good luck to you! I’m sure some bloodwork and an ultrasound, CT scan or MRI would render a diagnosis! You’re young, and I’m so sorry you’re going through this. Good luck with the diagnosis and treatment!!