Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

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ursy 10/12/2015

My story begin in November 2014 I went to the E.R. with stomach pains and nausea. I had not eaten in two weeks. I lost over 15 pounds. I was obese. They did blood work and everything was fine except my amylase and lipase was elevated. They did a scan of my lower abdomen and said I did not have gallstones. They assummed it was gastritus. I went to two different .E. R.. In January I went to see my family Dr. and she did a test of my amylase and lipase and it also was elevated. No symptoms. She said it was lower than it was previously. I don't know those numbers.
In April. I had an endoscopy and a colonoscopy. All was fine. Except a small polyp which was removed.
Last week I went for routine bloodwork and found my amylase was 214 and my lipase was 10 points higher than normal range.
I am a single mother of a 6 year old. I am besides myself with worry. I am so scared. This could be very serious. I am so worried about pancreatic cancer. I am crying typing this letter. I just need support and advice.
I have a follow up with my doctor on monday but i will request to see a GI specialist. Anyone have a similar story?

Any success with lowering amylase and lipase.
Please any advice will be appreciated.

naturelady08 10/13/2015

Hi Ursy,
I am in a similar situation. I have been in and out of the ER a few times just this Mont with unexplained pain in my left side. It came on suddenly out of nowhere in the beginning of September and hasn't left. I have had ultrasounds, ct scans, Hida scan, colonoscopy and endoscopy done. I am waiting on blood work to come back for pancreas tests and chrons and celiacs . All my tests have come back so far, normal. I am quite nervous myself. Definitely follow up with a GI . There is not much else I can say at this point because there are so many unanswered questions.but you are not alone :)

erikagrey 10/16/2015

Hello there!
I am Erika and I just joined the group. I've been dealing with Pancreatitis for almost 10 years now.
I can understand why you would be frightened. This is a very nuanced disease and it doesn't always make sense. You may have totally weird labs and no pain or debilitating pain and perfect labs.
I'm glad that you are going to the GI.
In the mean time, I would say that the best thing you can do to lower those levels is fast, hydrate and control the pain the best you can.

melissaframe 11/04/2015

I don't have any answers for you - only support. My pancreatitis wakes me up, keeps me from sleeping, prevents me from eating, and causes a lot of pain. I also experience anxiety due to it. I'm on 3 pain meds and 1 anti-anxiety med. Keep calm...stress actually makes pancreatitis worse. Ask for Xanax. It helps me relax and go to sleep.

melissaframe 11/04/2015

Don't worry about pancreatic cancer until you've actually been diagnosed with it. I've seen people on the internet who were diagnosed with pancreatitis 20 years ago... they're still living and so can we. I know the sudden weight loss is scary, I'm experiencing that too, but my doctor assures me, I do not have cancer.

Sesser 11/04/2015

Understand your fear, I flipped out when this first happened to me 8 yrs ago as I had JUST Lost my dad to pancreas cancer. As I type Im still panicked I will be diagnosed with this as my symptoms have progressed and its bad. My lipase is always mildly elevated, stabbing pains, my bowels are never ever formed anymore and have them all day long. The likelihood of you having pancreas cancer is low. Aside from pancreatitis Ive been told other factors can cause lipase to elevate though usually lipase and amalyse together indicates pancreatitis. There are many factors that can cause this. Id ask for a secretin based MRCP followed up with an EUS, stay away from alcohol and smoking.

melissaframe 11/05/2015

I don't drink anymore - thank God! I do smoke. I find also that drinking water is better. Pop (soda) makes it worse, especially the dark pop. I do better with juices and orange pop (for some reason). Pray about it too. Once you do a fast with only water, slowly introduce other foods and keep a journal of how they made you feel. I usually just take one bite and let it digest before continuing.

angelabird 12/03/2015

I just joined this group i have a 10 year old daughter that we just found out she has hereditary pancreatitis she started gettin sick at the age 2 the doctor always said it the flu or a belly bug that last year we almost lost her they finally did blood work and told me it was pancreatitis and it would go away with time then a year later it happened again they sent her to a different doctor that did alot of test and found it was hereditary pancreatitis she is sick all the time and hurts i feel so bad for her

yeuker 12/07/2015

Hey, sorry you are going through this. Best thing you can do is look out for you. That means following up with your GI and getting on a diet of things that are easy to digest. I blend almost everything which sucks but its better than 24 hour pain :-). Cooked fruits and veggies, oatmeal, smoothies, soups. Avoid fats. If you need to cook with fats, use coconut oil.

On the cancer thing, I'm not saying its impossible for you to have cancer, just that its improbable. We have all thought about it, but it is beyond rare for someone your age. Given you have a 6 year old, you are likely somewhere between 26 and 40 so your odds of panky cancer are nearly 0. Pancreatitis maybe, but cancer is much less likely.

Eat well and take care of yourself.

Good luck.

gitroubles 12/21/2015

I've had 4 ercp and stints 2x both launched pancreatitis. Now they say I have SOD or not... having EU in January. Pain upper right quadrant since Feb with pain in back since 2012 behind that area since having gallbladder out. I'm following Healthy Guy Pancreatitis site. He recommends grape seed extract and curcermin. I'm not able to do the cucermin due to SOD but started grape seed and using PSI nausea bands which seem to be helping nausea a lot but doesn't touch the pain.

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