Total pancreatectomy aged 28 - anyone else?

Hi, I'm Claire, I'm 28, and recently underwent surgery for a total pancreatectomy after finding a large psuedopapillary tumour that took over my pancreas. As part of the surgery they took the gall bladder and part of the duodenum, stomach and bile duct. I'm now a Type 3c diabetic (treat as Type 1), have to take Creon for Enzyme Replacement Therapy, and eat 4-5 small meals a day.

Unlike most people, I didn't have pancreatitis or any major symptoms before the surgery. Anyone else have a similar experience? I'm struggling to find any information on total pancreatectomy patients (that isn't from an academic paper), specifically anyone who didn't have pancreatitis before.

Parents
  • I have had a total pancreatomy at age 45 then a lobectomy 1year after , I have also had at age 18 this is when it all started for me, a Parathyroidectomy thyroid removal  and thymus , I’m now diabetic for last 5 yrs now , I am going in next week for scans as think possibly tumours are appearing in pancreas or from pancreas?. I have a condition involving endocrine system , MEN Type 1. 

Reply
  • I have had a total pancreatomy at age 45 then a lobectomy 1year after , I have also had at age 18 this is when it all started for me, a Parathyroidectomy thyroid removal  and thymus , I’m now diabetic for last 5 yrs now , I am going in next week for scans as think possibly tumours are appearing in pancreas or from pancreas?. I have a condition involving endocrine system , MEN Type 1. 

Children
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