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Type 3c Diabetes Management

Diabetes & Endocrine System | Last Active: 1 day ago | Replies (5)

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@dlr51

I had a Whipple for Ampullary Cancer in '04 at 53. Ampulle of the Vater (bile duct removed), head of pancreas+ additional piece, part of stomach, all of deuodenum were removed and bile ducts were redirected. For 1st 10 years I did not take any medication after chemo and radiation were completed. 10 years ago started Creon, an enzyme to help digest food. About 6 years ago I started having high blood sugar on blood draws. Because it returned to normal after 4 hours no action was taken (this was a mistake I know now). Finally began treatment for Type 3C Pancreatogenic Diabetes. It felt like a wasteland trying to get information. First tried dietary control only as doctor felt Type 2 treatment would kill me. Started insulin 2 years ago, I, too paid for strips, CGM, out of pocket for years before finally getting the 3C diagnosis. Started on an Omnipod5 pump in January. It has been a godsend. I have been very brittle as a result of the surgery and inability to absorb food. Nothing is truly predictable on a reliable basis. Working with a new Endo doc has been the key. That opened the door to other resources such as diabetes educators, nutritionists, etc. I had paid out of pocket for nutritionist previously during period of trying to control via diet. I am in range 89-92% of time at present. Still need more tweeking of carb/insulin ration, etc. , but we are working on it. There is a Type3C closed FB group and a DexcomG7/Omnipod group as well. Fighting elevated liver numbers AST/ALT again, along with very elevated Ferratin. CT, MRCP and Ultrasound of liver show no issues except for the malabsorption and by making tweeks to Creon #s are coming down. Happy to share info if you have specific questions.

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Replies to "I had a Whipple for Ampullary Cancer in '04 at 53. Ampulle of the Vater (bile..."

Congratulations! You made it through hell and back. Just so you know, diabetes of any sort and insulin use is never going to be perfect. There will always be fluctuations, but don't despair. Bon Chance!!

Wow, what a journey. It sometimes feels like you’re the only person who’s gone through the really rare stuff. Thanks for the fb info, I couldn’t find any before. Cheers!