📣 Discussion Topic: How did you learn more about your pancreatitis diagnosis?

[Olivia_MC]

Navigating a pancreatitis diagnosis can feel overwhelming, but understanding your condition is a powerful step forward. We offer patient education resources to support you on your journey, and your feedback is essential in helping us improve these tools. Did you turn to medical professionals, support groups, online resources, or personal research? Let us know in the comments below how you found the information you needed—your experience can help guide others in our community seeking support and knowledge. 📚👇

[Chloe551]

I got my diagnosis (chronic pancreatitis with severe Exocrine Pancreatitis Insufficiency) 6 years ago and was of course shocked as I had never heard of this condition before. My GI did not explain much so I began to research on my own, for instance on trusted medical websites, etc.. That's also how I came upon this forum which is extremely helpful. It it so good to know that I am not alone with this rare disease. Please excuse my English, it is not my mother tongue. Greetings from Switzerland to you all.

[Olivia_MC Administrator in reply to Chloe551]

We're so glad that this forum has been helpful!

[deniseinmilden]

Good morning!

Online generally and on this forum, but especially through the absolutely amazingly useful webinars that you (Skye et al) have produced and provided links for.

Thank you!

[Olivia_MC Administrator in reply to deniseinmilden]

💙

[JOSANDY40]

My Chronic Pancreatitis was caused by longterm use of steriods for stage 4 Endometriois from the age of 26yrs. I can nolonger take any form of steriod. The Chronic Pancreatitis started at 36yrs. My Pancreas was damaged and its enzymes reduced and some foods I could nolonger eat. My heart was effected and from then on I have to take a blood pressure tablet. I was taken several times in Ambulance before I saw a Endocrine Specialist with my Chronic Pancreatitis who spent 2hrs with me due to a train strike. Among the tests was a X-ray CT, another for Pancreas enzymes, mine were down to a quarter. He said a human body should have the ability for enzymes for 3 lifetimes! For about 2 yrs I lived on simple foods like rice and soup in small amounts through the day. I was ill with this and my Endometriosis. My Endometriosis has been extreme, even in my ears and in my lungs which would bleed every mth but the drug Zoladex stopped that. I could not work. I couldn't eat or drink fruit or coffee. My stools were either yellow or white. My pee sometimes would be cloudy or have a oil slick on, sometimes with a rainbow colours.

5yrs on still many things I couldn't eat banana, mushroom, little sugar, no mannitol, any fat, any hard to digest foods, any lactose or gluten.

I found enzymes replacements caused issues on a daily bases to try to eat my normal orginal diet.

I have not been to Hostipal for Pancreatitis for the last 6yrs now.

I will once or twice in a mth eat out. Then I will take a enzymes. I always take my food, water out with me daily. I don't ever eat 2 course meals, small portions.

I take a Propump Inhibitor and painkillers, peppermint.

I sleep mostly upright. I never eat food after 7.30pm.

8yrs on I can drink alcohol only with food, Processo and thats just 2 glasses a max of once a week. All other alcohol types cause issues.

I have spent alot of my life researching my health.

With these types of illnesses depression, feeling miserable, worried can be hard to except.

Once I excepted this me, I set about how to achieve a normal life.

[PomPupLove]

You Tube videos are my support and education source regarding my symptoms., The medical establishment continues to "gaslight", ignore, dismiss my decade long steatorrhea, white stools, upper abdominal post gallbladder removal pain. I live in the US and always appalled that those overseas seem to be so much further ahead in help and info than here in the US. So, according to my gastro I suffer from gastritis and get no advice at all regarding white/pale stools, burning URQ pain, gas/bloating/nausea. After more than 2 years and a change in gastro doc I am on the books to see a supposed specialist physician's assistant for pancreas in November. Not very hopeful at this point as when I actually mentioned EPI the doc here acted like I was talking about nonsense and told to get another colonoscopy. They only have hammers here, so I have to be the nail.

[Jackie1947]

Came as a surprise as CT was looking at the colon. If for that I wouldn't have known. Consultant was lack lustre and gave no information so had to find out for myself. Fortunately I don't get any symptoms

[Ozette]

When first diagnosed with EPI I was sent to a digestive center. The physicians assistant I saw ordered several tests, but offered no help as to living with it and refused to refer me to a nutritionist or dietitian. She said to return in a year with no follow up. On Creon my symptoms decreased a bit, but I was still struggling so ended up trying this website for help and information. In one post I found a list of websites to try and found some very helpful information from a couple of top physicians in the field plus The Mission Cure website. From those I learned about foods, dosing, how and when to eat which has helped immensely and has cut down on the diarrhea. I'm still figuring out how to manage fiber. On my own I found a nutritionist and she was very helpful and had great ideas. She sent me home with food lists pertaining to low fat and low fiber foods. Here in the US Medicare only pays for nutrition consultation for diabetics, so the young woman nutritionist I met with had to do special research just for me. My secondary insurance covered the visit. I learned from my own research that my medical team should include a dietitian, a pancreatic specialist doctor and mental health support and tests that follow my blood sugars, vitamins A,D&E levels. I was offered non of that. Luckily my Primary care doctor offered to follow up on those. It's sad, discouraging and frustrating to just be handed some pills and sent on your way with no support. It makes EPI more difficult than it already is. I'm grateful for this website for providing me with a start to finding info on EPI on my own.

[Signingfun]

I learned some basic information about my CP diagnosis from my doctors. But learning how to live day to day with CP I learned from others sharing on online Pancreas support groups. (There isn't a pancreas support group that meets regularly near where I live.) I've learned a lot of information through watching webinars and videos from Mission Cure, The National Pancreas Foundation and Ariel Precision Medicine. My GI referred me to a GI dietician that has been helping me figure out what to eat. Lastly, living with Type 3c diabetes, I joined a Type 1 insulin pump support group that I attended once a month until it stopped. This group has given me so much information about living healthily with insulin dependent diabetes.

Anne

[IH8EPI]

In my case, I was experiencing major stomach nausea and vomiting. I went to "urgent care" and was told to go to hospital immediately, which I did via ambulance.

After having an ultrasound, computed tomography (c.t.) scan, numerous blood tests, and finally an ERCP procedure, it was determined I had major gallstone obstruction in my bilary pancreatitc duct. The technician was able to wash the stones away, so a stent was not required. I then had my gallbladder removed.

Over the next several months, I had lost 70 pounds, and had those nasty side effects of EPI.

This is when my educational journey began.

I then found a great G.I. doc, who prescribed Creon.

I then found a dietician, who really was not too informed about the disease, so her advice was ineffective.

I began to feel better after a few weeks of using the Creon, and was educating myself on the specifics of CP/AP, diet and treatment etc. I found an awesome website on FB called "Beating Pancreatitis" by Paul Miller. He is not a doctor, just a long-time sufferer of CP/EPI and Celiac disease.

VERY informative website with hundreds of testimonials, questions/answers about doctors, medications, food issues and how to avoid them, etc. etc. etc.

This website helped me tremendously and I would suggest all sufferers of this insiidious disease check it out. Good luck to us all!

PLP2

[Epiguy in reply to IH8EPI]

I’m joining Beating Pancreatitis" by Paul Miller on FB today.

[IH8EPI in reply to Epiguy]

Great! I'm sure you'll find a trove of information, forums, advice on diet, pain relief, supplements etc. and answers to the endless questions brought on by AP/CP. You can also post your questions and share your experiences both good and bad. The site has put my mind at ease many, many times.