Pancreatic Disorders Group: Introduce yourself and connect with others

@j18
I have been lucky enough to have pancreatic and hepatobiliary clinics nearby me. I see that UCSF has one if you are able to go there, or you can reach out to them for a nutritionist that they recommend. Although, through experience, if you aren't a patient they often cannot give recommendations as it can be a liability. If you have a pancreatic specialist they should be able to recommend one. I also suggest checking out the National Pancreas Foundation website, pancreasfoundation.org . On the NPF website there is nutrition information and a cookbook. The NPF also can help find providers that are reputable. There is a ton of information there. I used it for so many issues. Also, if you have YOUTUBE there are lectures from Mayo, John Hopkins, Oxford, and so many other reputable institutions to get information and there are also videos from same on nutrition. Hope you find someone to help guide you through this as it can be difficult to navigate alone.

Wow! Thanks so much for the vital information. I am a patient at UCSF and my PCP is at CPMP. I tried a few private places and no one knew anything about EPI. I will follow your advice and check out the NPF. Many, many thanks!

I am a 65 y/o female, recently diagnosed with Exocrine pancreatic insufficiency (EPI). I have fought upper abdominal pain, bloating, gas, very loose stools to diarrhea, fecal incontinence, etc for a few years, gradually getting worse. It all started after I had a bad case of Rocky Mountain Spotted Fever (RMSF). I was on oral Doxyclicine for a couple of weeks before being hospitalized and given a stronger dose through IV in order to save my life.
My tummy problems started after recovery, and at first, I thought it was a meat allergy, then tried the FODMAP diet, fiber shakes, etc, trying to resolve my issues. Hubby has had some health issues, as have my 92 yr old mom who we moved into our home about a year ago, I had to have a hysterectomy, we owned a business (which we recently sold, yay), we slip some travel into our busy lives. . . so I just had SO much on my plate that it was easy to put my symptoms on the back burner and just deal with them. This last Winter I started having occasional episodes of halitosis, not related to oral hygiene, and my other symptoms were getting worse, so this Summer, hubby encouraged me to take the time to focus on my own health and get treatment.
I didn't believe the original diagnosis, since my Elastine test came back at 192, but then I retested two months later and it was down to 90, so yeah, something's going on. My GI guy said he would expect to see more like 500 on a morning specimen, so he is confident. I have had CTIs with and without contrast, ultrasound, fecal and blood tests for pretty much every possible related disease, infection, bacterial contamination, other than I have not had my colonoscopy, where I believe he will check for microscopic colitis? So far, I have had negatives on every thing they looked for, other than the EPI diagnosis, which resulted in him putting me on Zenpep, two 40,000 units per meal, one per snack. I have NO clue what constitutes a "snack" vs "meal" and have a lot to learn.
My symptoms seem so erratic, and certainly not as severe as most with Pacreatitis, that I hardly know where to start on what I should or should not eat, how much Zenpep I appropriate, etc. I still have a hard time remembering to take it every single time I eat, as we still have a bit of a hectic life, and now I read that I can't even leave it in the glove compartment in the car in the Summer so that I have it handy! arrrgh. I was told to take a multi-vitamin with K in it, but honestly, I haven't lost a pound or an inch, and I exercise fairly often, so don't feel like I deal with exhaustion. OTOH, I have had sleep issues more recently, where I wake up anywhere from 2 to 3 a.m. and am laying there wide awake watching the clock.
I guess I'm just here looking to learn. I find it difficult to accept that I would have this, as I have pretty much led a healthy life, with no chronic health issues...I'm the caretaker, not the one needed care, ha ha. I remember thinking, back a few years ago when it appeared that I was actually in good danger of dying from the RMSF, "This is a bunch of crap! I have taken care of my body, exercised, ate well, watched my weight, I lived economically, never once bought a Coach Purse, saved money for retirement, drove used cars, if I had a CLUE I was going to die early, from a tiny little bug bite, I would have eaten a LOT MORE CAKE!!!!!" We both thought I would easily outlive my husband, him being a little older and having diabetes and a bit of cholesterol, so it was a real shocker for us then, and again now. Yeah, I'm a tad bit irritated, ha ha.

@christyjh Your post sounds like how I felt and thought. I think i had EPI for 2 years before I finally went for help. But the doc who did my colonoscopy suddenly disappeared. I was told that his office and practice didn’t hold office hours but I could talk to the PA. She couldn’t really answer my questions so I decided to get a new doctor! It only took six months of no response from the doctor for me to ditch him! Met my new gastroenterologist yesterday and she was great. I was yelling (supposed to make me feel better.) at anything and everything! I feel so much better knowing that a competent doctor will oversee my newest disease. And I wish you some better luck. I understand your confusion about why and how you got this disease. I’m confused, too. Good diet, exercise, take care if myself, and was very economical (my husband was in the army, so economy was a big part of my life). Guess we’ll just have to go with what my newest doctor said “no one knows” as she shrugged her shoulders. My message to you is to find a new doctor and start again. Listen carefully to what they tell you, especially about treatment. Have the Creon capsules everywhere, just in case. Find the EPI group on FB. Talk to yourself about slowing down—that was hard for me. And listen to the good advise from someone who is a ‘bit’ older than you. I’m 77 to your 65! Keep me posted on how you’re doing and what you’re doing to care for yourself when you’d rather scream and have a hissie fit!

I have taken a photo of the Healthy Eating Out suggestions from UCSF as well as the list of foods to eat and to avoid. I need an email inorder to attach it? Please let me know and I'll try!

@j18 When you go to reply, you will notice grey box that says ‘add photos/files.’ Take a picture of the foods and then upload it right to this reply box. I’d love to see the list of foods to eat and to avoid!

@becsbuddy Thanks for your response! I didn't mean to give the impression that I would want a different Dr. I think he's very competant and knowledgeable, along with being very thorough. The first round of tests ruled out the obvious disease options, but the elastase was 192, so I was thinking maybe it was just a momentary low and was not convinced of her diagnosis. I had seen the PA, because he was farther out for appointments and I wanted to get in before we left on a month vacation, but the second visit was with him personally, and he ordered not only another Elastase test, but a huge # of other tests to rule out multiple other possibilities. I have one left, which is a colonoscopy to rule out the possibility of anything going on there. I will go through the test, but since he had done one on me just a few years ago, I don't anticipate anything popping up, although this will be a bit more diagnostic than routine looking for cancerous polyps.
I am actually on Zenpep and I do carry them with me, but it is still a struggle to remember to take them every single time I eat anything, and also, I read a lot of contradictory information on how much to take, so will work on that. I tried a Pert caluculator, but it was clear it would work for home cooking where I could measure weight of and control everything I cooked, but not very helpful for restaurant meals. I'm brand new at this so in the learning phase for sure, ha ha

@christyjh I’m somewhat confused over your use of Zenpep and meals. You mentioned that you have to weigh or figure out total amounts to determine correct dose of Zenpep. Is that right? Or am I out in left field somewhere? Oh well. It’s hard to remember to take Creon with the 1st bite. Sometimes I don’t remember until 1/2 way through a meal. I am getting better, though. I have pill boxes in my purse, next to my chair, in the bedroom (just in case I forget)!
It sounds like you are really organized and work well with your doctor.
When is your colonoscopy?

@becsbuddy
The Dr said two of the 40,000 unit pills with a meal, one with a snack, but when you deep dive, the most accurate way to take enzyme replacements is based on the amount of fat, carbs, etc in a meal. This makes sense to me, as fiber is hard to digest, so it stands to reason that certain foods or types are easier or harder to digest, and also, my big question is "what does a full meal consist of" compared to a snack. . . .some people say you don't need to take them with fruit, but then others say that is a snack, take one.
I'm like you, struggling to remember, but I have read to take the first one with my first bite of food, and then additional spaced throughout the meal, so as to match what our body would do naturally. My husband is like a clock taking his stuff, so he is trying to help me remember, but neither of us is used to me having to take anything, so it's a challenge, ESPECIALLY if we run to grab a quick bite somewhere.
I have my colonoscopy the first week of December, where he will look for microscopic colitis, I believe. I almost canceled it when I saw the low elastane results, which sort of convince me, but you can have both, and I finally decided just to go through with it and let him do his thing. I did make it clear to him that I'd like to be certain about exactly what we are dealing with, rather than a test here or there or try this or that. . . picking out scoops of poop for them was pretty darn disgusting, geeze, but I'll do my share to get on top of this. We spend our Winters in South Texas, leaving after Christmas, so I sort of need to get on with the program and figure out what I can or cannot eat. It's challenging to be out dancing when you never know whether you're going to have to make a mad dash or not, harr.

I was recently diagnosed with EPI after having digestive issues for the past several months. My score was 86 so that is considered severe EPI and I have just started taking Creon 36,000 dosage for a month and then my GI doctor will determine if it needs to be increased. Don’t know what the root of cause of this is since I never had pancreatitis, never smoked or drank excessive amounts of alcohol or had any of the other conditions mentioned for this diagnosis. I did have what I thought was food poisoning awhile ago so wondering if that might have caused the EPI. I also found out that I have pancreatic cysts and my GI doctor referred me to another GI for a endoscopic ultrasound. Since I never received a call back from that specialist, I called them to see why nothing has been scheduled, only to be told that my cysts are too small and don’t need this procedure at this time. All of this has made me anxious and stressed.