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1453931 tn?1285188953

Living with Chronic Pancreatitis

Hi I am 19, I am being diagnosed with Chronic Pancreatitis, We have been waiting for a specialist to come to our Mayo hospital to do a EUS on me, which is scheduled for Friday. My GI is super confident in his diagnosis, and so are we this is really the only disease I match up to 100%. In my case this is a rare diagnosis because I am so young and obviously my lifestyle habits have not called this. I have been sick for almost 3 years now undiagnosed and miserable. I can no longer to eat and drink because of pain swelling, and vomiting, so I have a GJ tube and I hate it!

Anyways my question is I want to know if anyone here has had a pancreatectomy and ilet cell transplant? (I am looking to have this done)

Also what quality of life have you been having?
5 Responses
Avatar universal
Just wondering if you have been checked for the presence of autoimmnue pancreatitis? Do you still have your gallbladder? If you do, have you been checked for issues related to your gallbladder?
1453931 tn?1285188953
Thank You so much for answering me!

I have had my gal bladder out since 2008. When this all first started happening that was one of the things they looked at, it did not have sludge or stones in it. It just was not functioning. When the looked at it they said that there was chronic inflammation though! My GI, at mayo now says that they did not have to take my gal bladder out, because when you get a pancreas attack or are constantly having one your gal bladder is just not going to work. After the surgery there was no change in pain, or improvement what so ever. If fact I began getting worse......the thing about this with me that You have to understand is my age, doctors dont believe that kids my age can even get pancreatitis, let alone it be chronic, so that in itself has been a hurdle for me. The GI that I go to now has worked with many children who have had chronic pancreantitis and says I match this disease perfectly, and it is very common for other GIs not to recognize it.

So about the auto immune thing, we have tested for that and it was negative. The GI works with a lot of pancreatitics and says that I do not follow the pattern of autoimmune or genetic, like I am my own different strand of chronic pancreatitis. So when he finally diagnoses me with this, he will diagnose it under idiopathic. This is the first Gi doctor I have been confident in, which i hope is not a mistake.
1461132 tn?1285898221
Hi CalGal,

Thanks for your post. Sorry to hear about your pancreatitis. Just a question how did you know you had chronic pancreatitis? I had my GB removed just like you in 2008. I had a bile leak and when they preformed a ERCP I got acute pancreatitis. It is a risk associated with the ERCP. Anyway after my amylase and lipase went down to normal I was checked out of the hospital. However since then I have had horrible nocturnal abdominal pain and it also happens when on an empty stomach longer than 4 hours. I see a specialist at Mayo in Scottsdale and they did an EUS to check my pancreas and there was some inflamition
1461132 tn?1285898221
Ops, wasn't done. Anyway there was some inflammation but they said that was normal and it would go away. My pain has never gone away. It only happens while I'm sleeping and if my stomach is empty more than four hours. Do you have any nocturnal symptoms?
Avatar universal
Hi sweetdreamsfairy.  I totally understand what you are going through.  I'm 24 years old and I had pancreatitis for a year now.  I don't drink and I don't eat a lot of fatty food (just the average amount that others eat who are trying to be healthy).  I've had a CT, MRI, endoscopy, and lab works done.  I've been to three different GI doctors and they keep repeating the same tests over and over again.  I have a stricture of my pancreatic duct in the middle of the pancreas and I've been diagnosed with idiopathic pancreatitis.  MRI showed two cysts who the GI doctors thought would go away but they are still there when I did another MRI.  I've been on steroids to rule out autoimmune, taken pancreatic enzymes, low fat diet but I still keep getting pancreatic episodes - throwing up and in severe pain.  My GI doctors think it is not that big of a deal but this whole thing is taking over my life.  I have missed work because of the excruciating pain that would lasts for two days. It is really frustrating not knowing the cause of the disease is and majority of the treatment options do not apply to me yet.  I am scared because I was told that sooner or later the pancreas will not work anymore due to the stricture.  So now it's just a waiting game.

Have you heard any updates on your health?
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