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DiscussionNew to exocrine pancreatic insufficiency (EPI): What helps?
Digestive Health | Last Active: Jun 28 7:16pm | Replies (117)Comment receiving replies
Replies to "I was diagnosed with endocrine pancreatic insufficiency EPI after having a reaction to estrogen cream and..."
Jewill, I am sorry for your problems and will offer what little I know about EPI and the resulting problems. I was dx'ed with chronic pancreatitis almost 11 years ago and as a result of a pancreatic tumor in late 2013, I had a splenectomy and distal pancreatectomy. I was diabetic previously, but became insulin dependent after losing the beta cells in the pancreatectomy. I have been using Creon for most of the time since my diagnosis with periodic increases in dosing. I am currently taking 9 of the 36000 capsules daily and weigh about 230 lbs. I guess it is pretty apparent that I don't have any malabsorption problems. The low-fat portion of my diet was not a big deal for me because my wife has always prepared food in this manner, but when I had to cut back on carbs as well as fat, I find it pretty difficult to leave home and find anything acceptable to eat. It is pretty surprising that I have not grown feathers or gills at this point as chicken and fish are prominent in my diet. The only other things I can suggest are two supplements that I have been taking for about 9 months now. The first is just an advanced antioxidant that contains vitamins A, C, E, zinc, selenium, copper, L-Cysteine HCL, and Taurine. There are quite a few other minerals in the formula and I order it from Amazon ( https://www.amazon.com/gp/product/B000Z8WW5I/ref=oh_aui_search_detailpage?ie=UTF8&th=1 ). I began using this when I read that a lot of Gastro-Intestinal doctors were finding this to be helpful in addition to simply treating the pain with opiates. The other one I take is turmeric curcumin with bioperine
( https://www.amazon.com/gp/product/B01HFLCH02/ref=oh_aui_search_detailpage?ie=UTF8&psc=1). This one also seems to help me sleep as that is a problem for me as my pain medicine wires me up and makes sleep difficult. If you have chronic pancreatitis, you could give one of these a try and if helpful, maybe add the other. As I weigh more than twice as much as you, one may be more than enough help for you.
As for a dr. in Austin, I would not have a clue, but with UT there, I would be surprised if the state university medical center did not have some very good Gastro-intestinal docs affiliated with their brand. I have read a few articles extolling the virtues of the system that has given us MD Andersen(sp?) Cancer Center and the research aimed at pancreatic cancer has helped docs discover a lot of things to help those of us who just have very bad pancreas', but not cancer. Of course we are at an increased risk of same and need to be monitored regularly. I would be happy to tell you anything else I have learned in the past 10+ years if there is anything in particular you have questions about. It is not fun by any stretch, but people sharing information has made the journal a bit more bearable and know you are not alone.
Gary
Thank you for moving me to digestive health. You ask if chronic pancreatitis was the cause of my EPI it was not it was from a very bad reaction to 2 drugs estergen cream and 2 weeks later a really bad reaction to a infusion of recast a BISPHOSPHONATE over 200 days of diarrhea,lost 25lb and lots of muscle.the only information from my dr was creon and a low fat diet thank God for the internet there is a lot of other things you can do.Creon is very important but organic low fat diet,supplements,hydration,controlling stress and weight bearing exercise all help.I am 78 and I have done organic food for the last 30 years. I would like to find a Dr in Austin Texas that knows more about EPI . If any one wants a list of the supplements I take I would be glad to send it.It may take a while working a job,not feeling well and typing with one finger takes longer.but I have done a lot of research and am willing to share also I am open to any information or suggestions.this is a wonderful place to find I have felt very much alone thank you jewill<br><br>
Hi did you ever find a dr in Austin.
Hi @jewill, I moved your message to the discussion in the Digestive Health group. Here is some information on EPI from the National Pancreas Foundation http://bit.ly/2hDubL5
I'm tagging @v1crew @opaqueandblue and @gman007 to see if they may have some suggestions about supplements and diet for you.
Jewill, Was chronic pancreatitis the cause of exocrine pancreatic insufficiency in your case?