New to exocrine pancreatic insufficiency (EPI): What helps?
I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates, dr did not check for that. i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill
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Im just looking for those in similar situations, what were the outcomes what were the diagnoses. In 2014 I started to have gallbladder attacks that would last for 2-3 weeks. It took until 2017 to have gallbladder removed there was no sludge, no stones it was functioning at 2%. I had the gallbladder surgery woke up in excruciating pain not like surgical pain continued to have more intense "attacks". A month later they found 2 tears one at the pancreatic duct and one at the liver duct. I had an ercp where stents were placed for 12 weeks. And dealt with pancreatitis and elevated liver enzymes during that hospital stay. Doctors said I shouldnt be having pain but I was. Pain continued, and could feel the placement of stents. I then had pocketing of bile where my gallbladder fossa was. An interventionist radiologist then drained the sac. The sac filled again and because it was too smalk it wasnt drained. I have been in and out of the hospital for years over 12 hospital stays averaging 7-10 day stays. All tests have come back normal (CT,MRI,Bloodwork) other than a little gastritis during an endoscopy and a cyst on liver thats been there for years. Ive had a small bowel study which showed that everything goes through my small intestine within 14 minutes. Ive been dealing with chronic fatty stools diarrhea up to 10 times a day-which lead doctors with a dx of exocrine pancreatic insufficiency (EPI). I was placed on a high dose of creon which helped with diarrhea but pain has remained. Pain is becoming so severe that I cannot leave my home, it wakes me up from sleep, Im having excruciating 8-10 out of 10 pain at the tip of sternum, into epigastric region under right breast and directly behind epigastric region in my back. Heartburn is getting worse. Ive lost 30 pounds since the end of January, and my GI isnt concerned because Im overweight. I just truly need insight or point me in the direction of things that can be looked into. Im at my last straw, my life, family, and career have been impacted for years.
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1 ReactionHi! It sounds like you have an excellent health care team☺️! I was losing 10 pounds per week until I requested Creon. It slowed my weight loss considerably; in fact, I need to watch myself not to gain it back! I started with the lowest dose, but quickly realized I needed to go up to the next level. Since then, I can eat a very restricted diet with no negative digestive side effects, as long as I take my Creon first! Best wishes to you and your husband!
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2 ReactionsHi did you ever find a dr in Austin.
@fyoung, that has to be confusing and concerning. I do believe you are correct about weight loss being as much a reason for, let's say investigation, as weight gain. There may be very benign reasons for it, but I would want to explore the possibilities. I have read a couple of recent studies that suggest carrying a little extra weight (not obese) increases mortality: http://healthland.time.com/2013/01/02/being-overweight-is-linked-to-lower-risk-of-mortality/ . This is one of the ones that included a significant number of participants. I don't know how old your husband is, so this may not be as relevant, but I know as age decreases one's activity, food consumption often goes down, and then it is very difficult to do what he is doing now for calorie intake. I would appreciate his problem for about a month, but I have had a great deal of difficulty eating in the past two months and have dropped about 14 pounds and 24 this year, so I probably should not wish for that. I would like to know what happens with the increase in caloric intake, please? I am not sure who besides his PCP should do some frontline tests, but that individual should be able to point him in the right direction if he is not going to investigate. May I ask how old your husband is? You mentioned a CT scan; would it give the study reader a look at his pancreas? Many people who have p[roblems with their P are asymptomatic, i.e. Steve Jobs. I am not suggesting that anything that dangerous is at play here, but some of the symptoms sound very familiar to someone with lots of P issues.
I might also add that he may be far less concerned than you. I was once one of those males who did not concern myself with doctors and did not talk about things that were going on with my health because I was bulletproof and big boys don't whine. If you learn anything or have other questions, I would really like to hear about your findings.
Blessings,
Gary
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1 ReactionI hope you find some answers. Very difficult sometimes to get answers. Hope you feel better soon
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1 ReactionGary; thank you for your response and yes it is somewhat helpful, but because we are still unsure of what is happening I am also still very confused.
My husband is very, very healthy and can pretty much eat anything he wants. He has no allergies and there is no food that causes him bloating or pain. He has never had any bouts of pain from his pancreas. His only issues are the loose, pale stools, and very frequent bowel movements with occasional gas and occasional oily stools. He is not on any special kind of diet right now mainly because we are not sure if he should be avoiding fat, protein, or carbs. We are just trying to avoid sugar as he does get spikes of high blood glucose levels, but only spikes up to 140-150. We have been trying a high calorie daily intake of 3000 calories at least per day. He seems to lose 1-2 lbs every 3 months, but has not gained any weight for the past 8 years. He is 5'8". I am getting concerned with his weight, but doctors don't seem to be and I don't really understand why. Just like being overweight can be unhealthy isn't being underweight just as bad too? Your information was helpful and I realize everyone has a different set of circumstances, so for us it is really hard to figure this out
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1 ReactionYes this helps thank you, but one follow up question. Did you have diabetes and if so were you or your doctor concerned about blood glucose levels with the 2 boost plus? Should we just concentrate on gaining the weight and not so much as to how? Also, can I ask what specifically was your symptoms with gastroporesis because I do not believe it has anything to do with being able to not absorb fat, protein, or nutrients from food, but more with muscle movements in stomach which cause pain.
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1 ReactionHi@fyoung. I have chronic pancreatitis and have had a distal pancreatectomy, so I have experienced EPI since about 2006, but more severely since 2014. I have taken Creon for about ten years and I do believe they aid in my digestion of food and I have had some weight loss with a more restrictive diet in the last few weeks. I am trying to exist on a gastroparesis diet, but it is no fun. Of course being bloated, in pain, and nauseous 24/7 is even less fun. I also use Boost drinks and eat a good bit of fat-free yogurt. I also make smoothies with protein powder as I now consume very little meat. Adding powdered milk to smoothies will also add calories. Because of diabetes, I still have to be cognizant of my carb intake, but it has really been difficult to onboard enough some days and I have had to reduce my long-acting insulin by about 20%. I don't know if any of this is helpful. I guess the goal should be to simply take in as many calories as possible to stabilize his weight and then try to continue that in hopes of some weight gain. How tall is your husband? Does he have anything other than the frequent bowel movements that create obstacles to eating?
Best wishes,
Gary
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3 ReactionsHello @fyoung and welcome to Mayo Connect. I am a volunteer mentor with Mayo Connect and I appreciate your posting about your husband's problem with EPI. I am sorry to hear of his weight loss and continued problems. This has to be concerning for both of you.
Many members have posted about using Creon. As you read what some of the other members have posted you will undoubtedly learn how they are coping and treating this disorder.
I would like to invite another mentor into this discussion, Gary, @gman007. I would also like to invite the following members, @huntsvillehank @jewill @bink @rickzaner, @codelue, @inhiscare2 who have specifically mentioned the use of Creon.
Also, here is some information from the National Pancreas Foundation regarding EPI, https://pancreasfoundation.org/patient-information/ailments-pancreas/exocrine-pancreatic-insufficiency-epi/ and an article from Everyday Health, https://www.everydayhealth.com/hs/exocrine-pancreatic-insufficiency/epi-treatment-steps/
If you are comfortable sharing more, please let us know if your husband has had any other diagnoses that led to the EPI? For example, has he had pancreatitis or some other disorder of the pancreas?
I look forward to hearing from you again.
Teresa
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2 ReactionsI don’t have EPI; I have severe gastroporesis and lost about 40 pounds and was down to 90. My Dr. told me to drink 2 Boost Plus a day, in addition to meals. In one year I am back up to 133. He was shocked. I hope this may help.
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