Pancreatitis -- confused by my situation, how to proceed?

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I had been having my lipase levels checked regularly since last January (Jan. 2016) as part of a monitoring program for a drug I was taking. My baseline lipase was slightly above the upper limit of normal (70 U/L where the upper limit of normal is 60). Over the course of about a year and a half my lipase levels rose to 144 U/L. Since I was completely  asymptomatic, my doctors advised that I continue with the medication. That changed back in June of this year when the lipase went up to 177 and I started feeling nauseous. My doctors took me off the medication (I'm not not on anything now) and told me I had drug-induced pancreatitis. They told me to eat low-fat to rest the pancreas. (I haven't had any alcohol in quite some time.)  They did not tell me I needed to eat extremely low fat or I risked having problems the rest of my life, but that seems like what it is happening. 

Long story short, since getting off the medication, I've kept getting better about my diet and yet my lipase numbers keep risIng and I seem to been getting sicker ... or at least more and more sensitive to fat (and other things too). Back in June, before I knew the symptoms were pancreatitis (before the doctors told me to eat low-fat), I had a really big lunch at aTurkish restaurant and felt bloated and strange for a day and a half after that. Then I got better and was eating my typical fatty diet again without any problems for a week. Then they told me to eat low fat. I reduced a few things, but over did it and got sick again. I didn't radically overhaul my diet at this point, because my understandings was that the medication had been somehow toxic to my pancreas and now that I wasn't taking it anymore, I would heal on my one. The low fat diet was just to help things along, not the main pgoint not. Anyway, I reduced my fat intake again, was better for a while, then got sick again. This happened about five times in all. The last time I had a major flare-up was about three weeks ago. I had been doing well, so I tried to advance my diet a little. I had been having no more than 12g of fat/day and no added fat at all. So, I added 1/4 tsp (very small amount) of olive oil and felt fine. So, I added the same small amount to my salad the next day ... and boom ... I knew I had gone ne too far. I had some sudden, sharp pain in my upper left abdomen towards the middle. The pain went away, so I decided to scale things back. I would eat very low fat the next day ... and no more olive oil at all! So, the next day, while I was eating my very low fat lunch, I suddenly felt extremely sick -- sharp, unrelenting pain again in the upper left abdomen, radiating to the back. I was so sick, that I had to leave immediately and somehow drove myself home. I took an ibuprofen and lay on the couch and started feeling better within an hour.

so, to summarize thus far: Back n June while I was still taking this drug which has supposedly brought about my pamcreatitis, I ate a whole Turkish meal and just felt bloated, but 2 months after stopping the medication, I have a 1/4 tsp. Of olive oil and all hell breaks loose. 

I recovered from from that last attack by reduced no my diet still me more. For the last 1 1/2 weeks, I have only eaten one of 11 foods which seem totally safe to me .. and slowly but surely the pain, then nausea has completely gone away again.

i had been feeling totally forgotten he for about three days, when I had and their blood test. I was really hoping that finally my lipase numbers would go down.Every other time, I've gotten a blood test since June, my lipase numbers have gone up, but then again, I always felt sick when I had the test. This time was the first time in a long time I was feelings no great. And guess what? The numbers were the worst I've ever had. My lipase is now at 249, higher then all the other times I was actually feeling sick.

so, what do I do? My gastroenterologist is still saying "drug-induced pancreatitis" although I stopped the medication over three months ago and my lipase has continued to rise since . I will see my primary tomorrow, but I'm not sure what he's going to tell me. I've had a CT scan and an MRI and they both showed my pancreas and gallbladder as being normal.

so, do I keep on with my pathetic diet of 11 different foods until my lipase numbers come down ... which will be when? 5 years from now? 

How do do I know when it is safe to advance my diet again? I thought I was playing safe before, but apparently not safe enough. With just 1/4 tsp of olive oil, I had an attack it took me over 10 days to recover from.

why am I getting what rose? Am I getter no worse? Should I try to get a second opinion, or will this be a waste of time? 

Do do I really have drug-induced pancreatitis like my gastroenterologist says? But why am I getting worse when I left the drug behind 3 months ago?

why were my blood test results the worst when I was feeling the best? 

Most importantly, what he n earth am I supposed to be doing to get better? My gastroenterologist told me to avoid saturated fat and have a moderate amount of good fat. When I told him that I got sick on just a little bit of olive oil, he looked at me like I had three heads.

ive also noticed that I suddenly have all kinds of food sensitive items that I never had befr

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  • Posted

    Sorry, I just was having a very hard time editing that post. To finish up -- I'm also have no food sensitivities I've never had before -- e.g. I had a minced clove of raw garlic in some hands memade tabbouleh (no oil added) and as soon as I ate it, I felt extremely nauseous and had extreme abdominal pain -- like I had been knifed in the gut. Later that dys, I had seen me soup (again no oil) with garlic in it and had the same horrible reaction. I also seen to have become lactose intolerance intolerant -- a catholic mditin I never had before at all. Now even 1/2 cup of milk is enough to give me cramps. And forget about beans and lentils. I thought I'd die of gas pains (never been a real problem before for me), etc. etc. 

    so, here I am with my sad collection of 11 foods all carefully prepared (all cookable veggies cooked, fruit checked for fermentation) wondering what ever happened to my digestive system and if I will ever recover.

    advice?

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  • Posted

    Sorry! That is horribly written! I have no idea how to edit sad
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  • Posted

    Firstly, if you do have pancreatitis I'd get a referral to a gastroenterologist who specialises in the pancreas if I were you.  Many/most gastroenterologists do not know a lot about the pancreas.

    However, there has been a study that looks at why some people have high lipase and has found there can be reasons other than pancreatitis.  Have a read of this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4299384/ and have your primary doctor look at it and discuss whether you might have an issue other than pancreatitis. Your primary will have more sway with your gastroenterologist than you will I'm thinking and can put that possibility to him/her on your behalf.

    Your CT and MRI showed your pancreas is normal, by that it means no damage can be seen reason enough to broaden one's outlook I'd have thought given your symptoms.

    If you feel better when eating the 11 safe foods you've found then stick to them until things are sorted.  It will be boring especially when you feel well but you know how bad you feel when you go off them so be diligent.

    You know not to drink alcohol or eat fatty foods so I won't labour that point.  

    It's very odd that you can't tolerate even a tiny bit of 'good' fat like olive oil however.  We all need some good fat or we'd not survive actually so research and experiment to find one that doesn't make you sick if the diagnostic process goes on for too long.

    Are you taking digestive enzymes before food?  If not perhaps you should as it could help, talk to your doctor.

    Good luck and keep in touch.

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  • Posted

    Thanks so much for that thoughtful response!

    i forgot to mention that since June, my Amylase has also been high, while everything else has been normal or close to most of the time. From the tons I've read on-line the combination of elevated lipase and amylase is pretty specific to the pancreas. Plus when I feel the pain, it's definitely on the pancreas side (left) or at least not the gallbladder side (right). (Actually, I'm pretty sure pancreatitis pain can be felt left, right or middle upper abdomen.) I had high liver enzyme levels once, but that was while I was suffering from the flu with high fever back t the beginning of August (and had been popping ibuprofen for days). Actually, it was right after the flu that I started having problems with the other non-fatty foods. So maybe there is some connection to that.

    i really like my primary (it was actually his idea to test the lipase in the first place, when all the other docs were saying why bother?), but as a matter of policy, he refuses to recommend or communicate with other doctors. That can be very frustrating. For referrals, he just gives a long list of names and asks the patient to choose. 

    But I can go about trying to find a pancreas specialist. 

    I also have to confess that due to past experience I am a bit leery of doctors. About 10 years ago, I had many doctors, in fact, every single specialist I spoke with push an operation that would supposedly cure a major health problem I was having. I really did not want this operation, but went through with it (wound up spending 5 days in the hospital and two months recovering at home) and, if anything, it made my condition worse. I finally found my own cure about 2 years later, believe it or not. It had to do with life-style readjustments never even suggested by specialists. Fortunately, I recovered from the iatrogenic mess. My sister had exactly the same problem I had, had the same advice, had the same surgery which didn't work for her either, but unfortunately she never fully recovered and is a mess to this day. 

    Back to the pancreatitis issue. I know that gallbladder disease in various forms runs rampant in our family. Gallstones mostly, but one cousin was just diagnosed with biliary diskynesia after suffering from a mystery digestive illness for months. My family is urging me to get a HIDA scan like she had, but that test scares the bejeezus out of me. You have to eat a fatty meal ahead of time and I apparently feel really sick with just a little bit of fat. Also, she didn't have elevated lipase and amylase. 

    Anyeay, I should probably see a pancreatitis specialist, but am concerned that they will find a way of talking me into something which will just make everything worse (like last time I had a major health problem).

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  • Posted

    Hello

    Sounds like you've been through a battle. I don't have too much information to give but thought my experience might help you. Over a year ago I got sick (vomiting and left side abdominal pain). I went and had blood work, ultrasound and endoscopy all come back normal. I then had a CT Enterography performed which showed atrophy of my pancreas (usually associated with chronic pancreatitis). I was referred to a GI specialist who performed a MRCP which found out I that I have Pancreas Divisum (congenital abnormality where you're born with two pancreatic ducts that don't fuse into one). I was told by that specialist my pancreas was working fine and she thought I had IBS. I had gone from 154 pounds to 110 pounds and the pain wouldn't stop. I had days where I couldn't eat solid foods because of the pain so I would drink Ensure (they're great even if you're lactose intolerant). I finally asked to see a pancreas specialist. I saw the pancreas specialist who wanted to perform an ERCP which he said is the only good test to look at the pancreas (for my condition). I had the ERCP performed and he placed a stent in one of my pancreatic ducts. I have to go back next week to have the stent removed. He told me my body had been in pancreatitis mode for basically the past year but I haven't been diagnosed with pancreatitis. When the pain gets bad I don't eat solid foods and that seems to help me. Furthermore, I don't know if any doctor has told you but once you get pancreatitis you can  have it the rest of your life. In my case Pancreas Divisum is rare and only a MRCP will find it. A MRCP is a noninvasive MRI. However an ERCP can cause a pancreatitis attack but in my experience they admit you for observation. I don't know where you're located at (I'm in the states) but I would definitely look for a pancreas specialist! The above comments are correct  wherein a regular GI specialist doesn't know anything regarding the pancreas. It took the doctors over a year to diagnose me. I'm to the point I'm very fatigued and can't gain weight. Have you ever seen a dietitian? Pancreatitis can cause malabsorption and/or food sensitivities. You have to be your own advocate and really push for answers. 

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  • Posted

    Wow. Sounds like you've had a real battle too. I hope they are finding ways of helping you cope. 

    I saw my primary today (I am in the US too). He said I shouldn't worry about the high lipase numbers: "I've had patients who just have high numbers. As long as you don't feel bad ..." Well, I told him, I do have symptoms. (Actually, I started feeling a little nauseous again today even with my safe diet.) I mentioned the possibility of chronic pancreatitis and he said no because I didn't have calcifications or other abnormalities on my scans and I don't have persistent abdominal pain. But then again, he's a primary, albeit a good one. 

    He mapped out a decision tree with three nodes/decision points. If I still am feeling worse after a month or so on my safe diet, I should first get a HIDA scan (I told him I was afraid of eating a fatty meal to prep the scan. He said you don't have to do that, which leads me to believe he doesn't fully understand what a HIDA scan entails). If the HiDA scan shows functional abnormality of thecgallbladder, easypeasey I get my gallbladder removed. If it shows nothing and I still am fine, I get my blood tested for cancer markers. Oh great! I had been worried about pancreatic cancer in June, July and August and thought I was in the clear with my clean scans. But no, apparently, I could have something really small that doesn't show up on a scan. But if they can't see it/find it, how can they operate? He says, I would just have to be vigilant and keep getting scanned to see if something shows up. 

    If the cancer markers are low/not indicative of cancer, then I would get a test to see if I had any congenital ductal abnormalities -- maybe like what you have. But, I a, wondering, if I had some congenital ductal abnormality, why would it only show up in my 50s? (I'm 53). Wouldn't I have had problems a lot earlier?

    He also suggested that I get OTC antacids and pancreatic enzymes.

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    • Posted

      To be honest I don't know what a HIDA scan is … that's probably the only test I haven't gone through. You can have congenital abnormalities like me and not have symptoms all your life. Pancreas Divisum only happens to 5% of the population and usually isn't symptomatic until there's injury and/or trauma. The injury doesn't even have to be to your pancreas for you to become symptomatic. You can literally vomit and cause injury to one of your nerves (I think it's your Vargas nerve) and that can cause pancreatitis.  Also injury to your stomach can do the same. I was fine for 36 years and then all of a sudden I started with abdominal pain after vomiting. My pancreas specialist told me he wants me to get a genetic markers test done. He explained that if there's certain mutation markers then he likes to remove the pancreas and then he makes another organ act like a pancreas. He does this because those mutation markers mean cancer later on down the road but if they remove the pancreas then no cancer. In my case I have two very narrow ducts, so the bile doesn't flow through correctly and then my pancreas becomes inflamed. I also have other medical issues but nothing compares to the pain from the pancreas. Furthermore, if you have a stone in one of your ducts that's not going to show up on an ultrasound or CT. You need a MRCP to look at your pancreas, it's the only noninvasive test to see how the pancreas is working. Unfortunately, a primary doctor doesn't know much about the pancreas. I hope you feel better soon. 

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    • Posted

      The HIDA scan really isn't that bad.  The fat you get is from drinking a high protein Ensure. You should go ahead with the test to rule out the problem.

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  • Posted

    I'm still skeptical. I checked online and a bottle of ensure has between 6 and 11g of fat.   I am currently eating 6g of fat In an entire day and I am trying not to have any more than .5 g in any one foodstuff. I got really sick on 1/4 tsp of olive oil and that is only 1.2 g/ fat. I can't imagine having 6g all at once. 

    One possiblity is maybe trying to take pancreatic enzymes to help to help with the fat digestion. They don't make you skip these for the test, do they?

     

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    • Posted

      They should run a fecal test on you to make sure you can digest fat. You may have EPI and then you would require digestive enzymes because your pancreas isn't producing any. I don't have a gallbladder therefore I have to be real strict about what I can/can't eat. I had my gallbladder removed 15 years ago and they never told me I needed to change my diet but I learned the hard way. Your body needs fat, and with pancreatitis it's recommended not to have more than 20 grams per day. The Ensure has been my savior but I think it's a different type of fat or maybe the way it's processed. I don't usually cook with oil since I don't have a gallbladder. I definitely would start taking enzymes because they help with digesting and maybe your pancreas isn't producing enough enzymes in order to digest your foods or maybe you're not absorbing the fat. If you're not already, I would journal what you eat for a couple days and see what triggers your symptoms. I know the feeling of being scared to eat, but now I rely on Ensure. I honestly believe it has saved my life because without it I would starve. My pancreas doctor even recommends it. 

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  • Posted

    Imuran (Azathioprine). It’s a drug that has one of the highest proven links to pancreatitis. According to one study, it caused pancreatitis in as much as 6% of patients. 
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