At a loss, chronic pancreatitis or possibly worse

I second Heather. I have also been dealing with similar symptoms as you for almost 2 years and have had every possible test except for EUS. I had a 96% EF on my HIDA and they said over-active and remove-- worst decision I have made so far. I had mine removed last December and I haven't been the same sense. Symptoms instantly just got worse for me and I can't eat the same foods as I did before. If I touch fatty foods I am in pain-- does fatty food cause issues with you? 

Something to think about outside of CP is sphincter of oddi dysfunction. It can cause symptoms similar to CP and a bad gallbladder. People who have this only get worse after the gallbladder is removed.

As far as something more sinister, 2 years is a long time to have symptoms and clear scans for it to be P cancer. I am 35 and this is what I have to remind myself when I go down that road of thinking (I have had a MRCP as well). In contrast, the average time from onset of symptoms to diagnosis in CP is 60+ months. Not to get too personal, but do you have a history of alcohol? This can be a big trigger for CP. 

Thanks for your response, I do drink, usually a drink or two every day, sometimes a good bit more on weekends.  I am not a heavy drinker, just enjoy a few a day, but I would consider it light to moderate.  I'm not the stumbling drunk guy on weekdays lol or even weekends but the occasional party I do get a hangover lol.  This is been a tumultuous ride tho, I sure am worried about the PC stories you hear, but not the symptoms seem like CP, but who knows.  I have read on the spincter of oddi dys, not sure.  I will demand the MRCP today.

Yea every time I eat anything fat or greasy I’m in so much pain the whole next day and I feel sick a good portion of the time. It sucks living like this but I didn’t really have a choice on gallbladder removal because mine was full of stones but they never told me what makes stones develop so the first time I had an attack I probably could have saved my gallbladder had I known but I was young and naive. 

Yeah, I shouldn't have listened to my surgeon-- they just want to cut and make a buck. I had to cut any form of caffeine out of my diet (instant pain), most fats and alcohol. Alcohol is the least trigger, but I don't want to poor fuel on a smoldering fire, as to say. 

I started taking pancreatic enzymes (pancreatin) about 4 months ago and this settles my digestion. It also seems to knock the pain as well, as my last flare up was over 2 months ago. If I stay really strict with diet and take the enzymes I barely have any pain/discomfort. Skim milk also seems to be a trigger now, which sucks as I love cereal. 

Where do you get these enzymes? I think I would like to try them to see if they help me. 

I hope you don’t take offense to what I’m going to say but even one or two drinks a day is too much for your body if your having all these symptoms, I would stop the drinking to maybe once or twice a week because alcohol could be aggravating your pancreas. I would just go off of it for a week or so and see if you feel better, if you don’t then that’s probably not it but it would be worth a try. 

No offense at all my plan is to quit totally but I’m sure I’ll cheat every now and then.   I also plan to get on a diet for it and maybe try some pancreatic enzymes.  

I’m going to have an MRCP the Dr ordered it today, if that doesn’t show PC then I told him my best guess is some type of pancreatitis as I fit the symptoms.  He didn’t disagree so we will we.  Thanks for the advise have a great day!!

Of course. Keep us updated on what they find please? 

Digestive enzymes are a prescription. There’s different doses and different brands. Dependent upon your pancreas condition, sometimes your pancreas needs enzymes with every single meal (even snacks) and sometimes just regular meals and your doctor will prescribe the dose accordingly. There are enzymes sold at stores but they aren’t close to the milligrams the doctor prescribes. For example you may come across enzymes that say 100 milligrams but the doctor actually prescribes 12,000 a meal. It really depends on the person and their condition. I don’t recommend going out and purchasing enzymes. Furthermore, I was prescribed a particular brand and was allergic but found another one I wasn’t allergic to. There’s a test that will tell you if you need digestive enzymes, it’s called an EPI test (fecal test) it measures the amount of enzymes your body produces and absorbs. 

As Shortie mentioned they can be prescription based, but you can also get them over the counter. My doctor suggested I try them and instead of going the expensive CREON route (prescription), I ended up using pancreatin by Now foods. I tried a few others, but they didn't agree with my stomach. For the most part, the prescription ones and the over-the-counter are the same (based on a pigs pancreas), just the concentrations or the coating. There are some others that I believe are plant based, but I have not tried them. Lipase concentration is what you really need to pay attention to, as that is that enzyme that breaks down fats and causes strain on the pancreas if it is inflamed. That is also the value they typically look at in your blood during an acute attack. 

MRCP was normal, i'm at a loss. about ready to take the gallbladder out, that is where the pain is focused, just ready to not fight this pain so much and feeling like crap.

I forget, did you mention that the HIDA tests made you feel bad? That's usually a pretty good sign it's the gallbladder. Although, they typically use CCK to induce the gallbladder squeeze and this also stimulates the pancreas.

Mine got worse when I removed the gallbladder, and I'm just now getting back to eating things like no-fat yogurt without feeling pain and wanting to throw up.

I ended up controlling my pain by cutting out caffeine, alcohol, and limiting my fat intake to like 20-30 grams a day. If I do this my pain slowly subsides to almost nothing. You may want to try a super strict diet and see if this helps even if you don't feel pain during meals. I also started taking pancreatic enzymes with meals and they seemed to help as well.

Question, where is your backpain located? Upper right back next to shoulder blade? That is where mine is located during a flare-up.

No the HIDA did not really make me feel bad, we ran another hida and it was an 87% EF, i said well isn't that "high". I went from low to high. My doc laughed at me.

My pain has been all over my back, but mostly between shoulderblades from the "bottom" of them in center of my back all the way up to my neck and it is really stabbing pains on right side from ribs to back, just a general ache all the time and it gets worse some days. Lately it is mostly right side pain from back of ribs to back like in the liver. My pee is dark in the mornings and I feel sickly, but i think it is that i get dehydrated easily now for some reason.

So i have had in the last 12 months, 2 ultrasounds, 2 CT's, 1 MRCP, endoscope, colonoscopy and two HIDA's. Nothing found, zero except a 37% EF on one HIDA and 87% on the other HIDA. I'm just ready to be pain free. My wife says take the gallbladder out, i'm just about ready to make that call.

Here are some notes I have on Enzymes:

• On comparison of the two products (Pankreon-- a classic form of pancreatin, and Creon-- a modern galenical in pellets), it was found that Creon achieved the same results as Pankreon 700 in a doses 2.5 times lower.  https://www.ncbi.nlm.nih.gov/pubmed/1701657
• Lipase & Proteases are damaged in the stomach, but many proteases may survive. The majority of currently available supplemental pancreatic enzymes are available as enteric-coated microspheres formulated as capsules or tablets. However, none of these preparations will reliably release their contents within the critical zone of the duodenum-proximal small bowel[105]. Uncoated enzymes are also available both from pharmaceutical companies and from health food stores[105,123-125]. Lipase is irreversibly inactivated when the pH falls below 4, whereas proteases are much more pH resistant and are more likely to survive transport through the stomach. However, they can both be destroyed by pepsin. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4986390/
• Sending through a bunch of Protease is probably required to limit pancreatic secretions - The transplant studies used pancrelipase, specifically enteric-coated Pancrease[96]. Slaff et al[94] also clearly demonstrated feedback inhibition in 3 chronic pancreatitis patients without steatorrhea by using 30 d of non-coated Viokase, 8 tablets q.i.d. The high dose, currently available non-enteric enzyme, Viokace, (i.e., with 20880 USP units of lipase) contains 78300 USP units of protease/tablet. If all the protease activity was from trypsin (which it is not) each tablet would contain only approximately 3 mg of trypsin. The dose-response experiments in man suggested at least 1 mg/mL was required for feedback inhibition. It would therefore be very unlikely that this minimum level would be achieved in vivo using Viokace even if all the protease activity survived transport through the stomach. Acid-stable proteases are available as over the counter medications, but to our knowledge the ability of the drug to initiate feedback regulation of pancreatic secretions or its resistance to acid-pepsin has not been tested in man. One such inexpensive, over the counter product, “Essential Enzymes 500”, has been used successfully in irritable bowel syndrome. It contains 12 mg of acid stable proteases/capsule[124]. Studies are still needed using acid stable proteases for their ability to initiate feedback inhibition of pancreatic secretion. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4986390/
• Suggested enzyme dosing for those with pancreatic pain: For initial therapy for patients with pancreatic pain, we recommend that the focus be on correcting nutritional deficiencies and malabsorption. Treatment of fat malabsorption requires at least 20000-30000 USP units of lipase/meal[105]. One might start with the non-enteric-coated 10000 lipase unit Viokace formulation (i.e., one tablet at the beginning of the meal or just before the meal, and 2 or 3 more tablets spread throughout the meal plus one per snack). The use of a proton pump inhibitor is recommended, possibly as a double dose such as 40 mg of esomeprazole twice a day, to reduce destruction of lipase during transit through the stomach. Potassium competing acid blockers should simplify therapy when they become available in that they provide reliable pH control. Alternatively, one could use a combination of non-enteric-coated and enteric-coated formulations[105]. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4986390/
• A regimen of non-enteric coated enzymes taken orally with meals and at bedtime provides good clinical response in most patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1743323/pdf/v081p00491.pdf

wow, thanks for the detailed response-- was this suppose to go to the other thread that wasn't 6 months old? I'm not sure if the enzymes help the pain, but my digestion was improved (I don't need to get into describing this).

No, I meant to send that response here 😃

There's not a lot of good evidence that Enzymes can help with pain, however the only studies that seem to show they do use the uncoated enzymes. With the uncoated enzymes, very little lipase can survive the stomach, and proteases can also be damaged. However, if you're eating a very low fat diet this might not matter.