New to exocrine pancreatic insufficiency (EPI): What helps?

Gman007 Thank you for your reply and the information on supplements.I take all of these and a lot of antioxIdants alphs lipoic acid, N A C,acetyl.-l-cartinine ,vit a ,e selenium . A lot of the ones i take help with brain function.I like to be able to think clearly,and at almost 80 that takes more working at.I agree with bobinthevillages about the lack of experience any GI Dr has.here is a web sight on dosing of creon wwwcfhcp/dosingguide. I think that is the one that says Too high dose of creon is associated with FIBROSING COLONOPATHY. i have less pain if i have smaller meals and control my stress.I am going to try to contact the collage here in Austin to try to find a Dr with more experience treating EPI any information on that would be good

Bob, my experience has been that major pancreatic treatment centers are where you find docs who have the most experience with anything pancreatic. I live in upstate SC, about a three hour drive to the Medical Univ. of SC and they have some amazing doctors there who treat everything related to the pancreas and in large amounts. My surgeon is recognized as one of the best in the US and also does a lot of work in the Hollings Cancer Center there with patients who have pancreatic cancer. They also have some great endoscopy therapist's who have given me tremendous relief with stents to help pancreatic drainage and a balloon therapy that has removed pancreatic stones. I think it is likely to be these type of high volume centers where the best doctors for less common illnesses are to be found. I know the May Clinic facility in Jacksonville, FL has some very prominent pancreas docs as well as one of the top surgeons.
My weight has gone up since I was dx'ed. Some of that is related to constant inflammation of my pancreas and stomach in general (pancreatic issues have led to the discovery, if not the cause, of IBS-C, a very peptic stomach, highly acidic, some minor colon issues, etc., etc., etc...) and some is related to a lot lower level of activity due to simply not having the energy to exercise, and the fact that my pain meds make me hungry which is the reverse of many folks reaction. I am also insulin dependent as a result of lower insulin production in my pancreas as I have lost at least a third of my beta cells, if not closer o a half. I gained about ten pounds over the first several weeks of insulin use. My weight can also vary by ten pounds over 2-3 days depending on the level on inflammation around my pancreas. During my longest hospitalization for an acute attack I went from about 225 lbs. to 255 and back down to 205 within three weeks. That is comparable to a gestation period of pregnancy with the weight changes in 3 weeks instead of 37.
Sorry, I tend to be overly verbose. How did you discover you had EPI and does that mean you are insulin dependent? Is the primary result of your disease being a lack of digestive enzymes? How long have you been dx'ed with EPI?

Thank you for this excellent information. I currently live in Central Florida, The Villages, a massive retirement community. However, it is likely I will be moving to Amelia Island in April, so your suggestion to go to the Mayo Clinic in Jacksonville is a great resource.

I was having urgent diarrhea in the middle of the night 3-4 times a week. Earlier this year after seeing my family doctor and a urologist I finally got to GI doctor. He did a colonoscopy and ordered some stool tests. All the tests came back normal except for 1, the elastase was severe. I have never had GI issues before this, I am 66.

Once I went on 12 Zen Pep a day the urgent diarrhea virtually stopped making the doctor feel as though he had the correct diagnosis. However, I am still not sure as I never had any of the conditions (pancreatitis or alcohol issues or cystic fibrosis) which seem to cause it.

My concern is my weight as I am the lowest weight since being a teenager and I cannot gain any weight no matter what I eat. I am also anemic so I just started taking iron supplements. Also, I have had Cat scans, MRI's and endoscopy procedures and thankfully no cancer has been detected.

I am really appreciative of this website as this has been my only opportunity to discuss my EPI issue with anyone who understands it.

Once you are closer to Jacksonville, I would look into a second opinion just for your peace of mind. If you are digesting everything it would seem you could add weight if that was your goal. The GI you saw may have been spot on, but no reason not to be completely comfortable with what you are doing. Do you have a pretty well balanced diet with veggies and fruits, etc... I have to try to get a lot of my calories from protein because I am so limited on fts and carbs, so that may have some impact on my weight maintenance.

The thinking clearly is a chore for me as well. I am a bit more than 2 decades younger, but have been on heavy doses of opiates for the pain that I have chronically from my pancreas, scar tissue, phantom pain from missing an organ and parts of others, and various other stomach ailments. I do pretty well if I am focused on a discussion, but my wife often says remember, "we talked about that" and I have no memory of it because I was busy writing a reply to someone online. I will have to look into your other supplements.

<p>I would like any information on diverticulitis and exerine pancreatic insufficiency EPI. i read that protein powder might have triggered my recent diverticulitis incident.the gastroenterologist prescribed cripo and flagel i am allergic to flagel dr ignored warning on my chart. Cipro has serious side effects like tendon rupture in people over 60 i am 78. I am on a liquid diet with bone broth fresh vegetable juice .olive leaf for bacteria lot of vit a b c d e selenium grape seed extract and curcumin (CuraMed) brand milk thistle slippery elm trace minerals magnesium probotics. Collagen powder No dairy sugar or honey grains trying not to have candida..is there any one with any suggestions .i also have pain in my lower back that i think is related to diverticulitis. if any of this helps others it is helping me any suggestions are welcome june</p>

Hi @jewill,

Here is some information from Mayo Clinic about diverticulitis: http://mayocl.in/1DZsj1Z
"Are there trigger foods I should avoid to prevent diverticulitis attacks?" http://mayocl.in/2o27J2a
"Diverticulitis diet" http://mayocl.in/1Fjc7O4

We have quite a few members who have diverticulitis and can share their experiences with you. Please meet @lindainarizona @wesbig @user_cha5e73f6 @retrebotic @akogut @disfraz1 @lynnkay1956, @allegro @aigimw @ michellr @peterhamilton @bakb @lshell @hopeful33250 @frane1939 and @dbwhitted @gailfaith.

You may also wish to view these discussions on Connect:
Mucusy blood on stool: http://mayocl.in/2oJDiAD
Diverticulitis: http://mayocl.in/2nIFdRh

@jewill, have you shared your concerns with your doctor?

Hi @ jewill, @gailfaith here. Way back in the 70's, I had some friends over to lay a vinyl kitchen floor and one of the things I served was sauerkraut. Shortlly there after I had abdominal pain with fever in the lower left quadrant of my abdomen. After a day or two as best as I can remember, I saw my doctor and he admitted me in case it was my appendix, though on the wrong side. He brought onto the case a general surgeon and my gynocologist. I really like the surgeon. One day I took some mercurochrome and drew on my abdomen above the pain, a dotted line and the words, "to open cut on dotted line". The next day, when the surgeon saw that, he studied it for a few seconds and said that is exactly where I would make my incision if I had to!!! He didn't need to. When I was well enuf for more testing that is when they confirmed the Dx as diverticulitis. After a total of 8 days, I was discharged. There after maybe two or three times a year I would have another attack, but usually continued to work and it resolved itself. I would go onto a clear fluid diet like broth for several days, That went on for about 15 or so years. It has been years now since I've had another attack. In April of this year I went to Mayo for a parathyroidectomy and shortly after I got home, I again started with similar abdominal pain, thinking, it's just another d. attack. When the pain didn't go away for a week I went to the ER, and after some rays, they said it was a kidney stone, my first, not diverticulitis. What I find of interest, though is they know I still have multiple diverticula, but I have not had another attack for YEARS!!!!! In the beginning they said what not to eat,such as seeds, nuts, etc, but I eat anything with no problems. Trust your experience is also mild and resolves spontaneously. I don't remember if they ever put me on antibiotics, but I don't think so.

Thank you @gailfaith @jewill here i hope this is short lived also .

I tried to share my concerns with my Dr but he was not very helpful the info on diet and supplements i got from the internet.thank you for the wed sights