My lipase level are 1300. Yours are pretty good. For two years, I did the "glass of wine once in awhile" - get away from the once in a while and quit completely. My pancreas has shrunk 70%; however, I have had no attacks or pain in 16 months.

Jonathan,

Although it appears you went through hell and back, your story is encouraging that this can end someday. What happened? Out of the blue, things just stopped hurting? Food just started digesting?

C

I was wondering the same thing. You said your pancreas has shrunk by 70%. How is your quality of life? Do you take enzymes to help you digest, and have you had any surgeries or procedures to help with all of this? Did you have blockages and stents put in?

Hi,
I was having major attacks every 10 days, yes 10 days. This lasted seven years. My case was brought up by my GI doctor during a conference in Louisiana. I have no idea what happened. Sixteen months ago, I was able to go from eating no meat or fatty foods to eating everything and anything. I have gained 30 pounds. I have had no attacks. The bad news is my liver functions are going off the charter. My doctor wants me to loose 10 pounds before he does a biopsy on my liver. I wish I could add more, but we just don't know what happened.

Well during my first attack it was 2 x high but I had waited 2 wks before testing my lipase. Ever since then its anywhere from 80 to 120 (60 being the threshold). You need a standing order, so you can get tested whenever a flare starts, or when you have worsening pain or even when you feel good-keep every lab slip and compare. I went a bit over the top and have been doing this for years and even have a spreadsheet with a description of what was going on w me at the time of the test (bad bm, bad pain etc) so I could track. I am now diagnosed but it took me 6 yrs hence why I was on top of it.

My Dad died of pancreas cancer 6 months before my first attack. I also now have a small cyst 3 MM on my pancreas that wasnt there for the first 5.5 yrs. Have you had an EUS? Have you had this cyst biopsied? Normally at that size they biopsy. Have you had your CA 19 tested? I also test this every 6 months and it HAS been elevated a tad in the past due to inflammation but can also be elevated due to pancreas cancer. Have you had genetic testing? I strongly recommend you do. Not to scare you, but it sounds like it can be genetic on your side given your sibling. Not a coincidend IMO

Oh sorry I read your cyst originally as 4 CM not MM. They should still be watching it-my dr is watching it annually

Sesser - My cyst is 4 MM and too small to biopsy. I have never had any pain or other issues such as many describe here. the only thing I will say is that after a night of over indulging in both rich foods and a few drinks, I did feel crappy and bloated the next day. I also have ulcerative colitis and irritable bowel, so I always attributed some symptoms to that. I did have an EUS 5 months ago and that's where the cyst and pancreas divisum was discovered. I plan on having another one in several months. they are going to watch the cyst closely. My CA-19 was very low, lipase a little above average, but everything else is normal and I feel great overall. Do you happen to now if you have that genetic anomaly pancreatic divisum? this is something you are born with and it can predispose you to pancreatitis and cysts. I also have the family history mixed in so it leaves me anxiously nervous some days!

I never had a pancreatitis attach but incidentally they found my levels were 7x over. I had ct scans, ultrasounds, EUS, MRCP and nothing. This has been going on for over 5 years.

I have no pain, nausea, fever, etc...

I guess I fall in that 5% range of healthy individuals with crazy numbers.

For years my lipase will fluctuate day to day. One day it will be normal, the next day it was 3x over. I have a huge family and no pancreas issues.