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Need help/advice re: Chronic Pancreatitis & Complications
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latelinda1946 posted:
I am 64yo female. I do not drink alcohol. Had gallbladder surgery 2/09 after stones erupted and damaged my Pancreas and Liver. Had acute Pancreatitis with several hospitalizations, now have chronic Pancreatitis. That was my 39th surgery. My spleen was ruptured during surgery to remove my entire colon after having toxic megacolon. I have had gangrenous infections in my abdomin x 3 over the yrs since ruptured appendix at age 11 (was not taken to hosp until after septic). All my Illeum has been removed now and have perm Jejunemostomy. Had 14 Pseudocysts by 10/09, biopsy in 11/09 was benign. Now have largest cyst 4.7 x 4.2 cm and Necrosis with possible abcess. Scheduling another biopsy this week in Oklahoma City. I have Medicare and also Indian Health. The Tribal clinic told me I am now Type 1 Diabetic and Insulin dependant. Last year I was told I needed enzymes, but IHS told me they are limited to Cystic Fibrosis children. They will not give me anything for pain, only my Insulin, meds for Hypothyroid and blood pressure. I used Medicare to see Gastro dr. He will not give prescription for pain, he just told me when I am in hosp on IV and will give meds for pain as in-pt. Last CT report said both of lower lungs have collapsed. Also have patches of Necrosis and possible abcess. Also, Renal cysts and lesions.
I have concerns about my survival if I have to have another surgery. I have read about Whipple and sounds like quite an ordeal.
My body temp has been 94-95 this past week. I had UTI and my lymph glands under jawline are enlaged and also have sores in my mouth cracks in my tongue. The Gastro dr will not discuss anything with me, he just says it is complicated. He also is reluctant to touch me. I reached out to touch his arm and he jerked awy from me. Maybe he thinks I am contagious or something. It strikes me as odd. Also, I want to know if my lungs will get better and if I still have UTI? Should I chage doctors? This is getting so expensive and my Ostomy supplies are also getting more expensive. It is taking so much time for things to resolve or will it never get any better? Am I going to have Sepsis again? What if it leaks into my gut again? At the Tribal clinic they say I am beyond their expertise. The Gastro dr will not discuss the reports with me, but I saw that he suspects an abcess, but no mention of putting me back into hospital, so maybe it is not bad enough yet. Even with my lungs my oxygen is in the 90's so far. Please advise. Linda
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latelinda1946 responded:
Well, I am scheduled for next Monday in Okla City. I also talked with the nurse and she said my issues with my lungs and kidneys, UTI, is a matter I need to take up with my primary care doctor. So I guess I will wait to see the Tribal Clinic, if it gets worse I will go to ER.
 
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latelinda1946 replied to latelinda1946's response:
Well, it has been 3 yrs and I had half of my Pancreas and a tumor about the size of a lime removed. Also surgeon repaired 5 hernias, removed 39 metal clips from my abdomen, 5 hrs to remove all the mesh masses, now have Pig holding me together. I am Insulin dependent, but it is okay....My husband had surgery for Prostrate Cancer, two wks after my surgery....we were quite the pair trying to care for each other post op...we are doing okay now....so goes our life and we are survivors.


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