missing half of pancreas

[Kelly842]

so i am a 39 yr old who was born with extrahepatic biliary atresia.
one of my main concerns is that according to infant medical records and a recent CT scan, it has been noted that i am missing "distal pancreatic body and tail". could this be the cause of my malnutrition, my inability to gain weight and my massive sugar craving?
should i be taking insulin for this?
i cannot get in to see a specialist till march of next year *GROAN* what should i be doing to help, in the meantime?

[fntn]

Has your liver decompensated yet? Ascites or edema to go along with the GI bleeding?

[Kelly842]

not able to solve digestive issues, sadly. they are basically monitoring me for GI bleeds. they want me to get assessed for a transplant. they say i don't need one yet but the kasai only buys time.

my pancreas issue is problematic cos i am having a hard time gaining weight, eating or sleeping right, and i have an excessive sugar appetite.
got blood drawn yesterday- i usually go every 3 months. this time they are testing not only my LFTs but also my pancreas functions. i should know in a few days what the results are. and they are setting me up with an endocrinologist.

i'm doing pretty good except for excessive sleepiness and hunger though i have no stomach for anything.

[fntn]

Hope you are doing well. Have your doctors been able to solve digestive issues for you? I know some with the Kasai procedure need some followup later on in their adulthood.

[Kelly842]

i had the Kasai at 6 weeks of age. and the pancreas never developed completely- it's a congenital problem. during the kasai procedure, the only thing they removed completely was my gallbladder, which was non-functioning and shriveled up like a chili pepper

[fntn]

Sure is amazingly difficult getting to see some doctors. You've made it this far without any obvious issues so I wouldn't do anything drastic before your appointment. You might just some of your local pharmacies to see if they do some of the simple medical testing, they maybe able to test your sugar and insulin levels for instance.

Did you have the Kasai procedure done as an infant or something else? I can't imagine why they would have needed to do anything with your pancreas though. Were they able to tell if you were born this way or if there had been some surgical intervention performed?