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Did anyone go straight to Chronic Pancreatitis without ever having an acute episode?

Posted , 11 users are following.

CarebearwsMom
CarebearwsMom

I have some symptoms of Chronic Pancreatitis, but I have never had an acute episode.  Have any of you just been diagnosed with Chronic Pancreatitis, but never had an acute episode?  If so, what were your primary symptoms that led to a diagnosis?  Many thanks for any insight that helps me figure this out.

0 likes, 12 replies

12 Replies

  • Shortie79
    Shortie79 CarebearwsMom

    Posted

    I was diagnosed with chronic pancreatitis last year but I have never been diagnosed with acute pancreatitis. It took the doctors over a year to diagnose me. I started with vomiting and horrific abdominal pain that radiated to my back after I ate. I also was losing weight (I have been bedridden since 2014). However the biggest symptom was the pain, I couldn’t control it, no matter what I did. I went to the ER but my blood was normal. My primary doctor ordered multiple tests but they came back normal. I finally had a CT Enterography which showed atrophy of my pancreas (irreversible degeneration of the pancreas usually associated with chronic pancreatitis). I told that to my primary doctor and was referred to a GI specialist who ordered a MRCP. The MRCP revealed I have a congenital abnormality called Pancreas Divisum (born with two pancreatic ducts that never fused together). The Pancreas Divisum is what caused the chronic pancreatitis. The GI specialist still thought my symptoms were IBS related but I know my body and knew something wasn’t right, so I asked to see a pancreas specialist. The pancreas specialist ordered an ERCP. The ERCP confirmed the Pancreas Divisum diagnosis but also is what gave me the chronic pancreatitis diagnosis. The pancreas specialist advised me a MRCP is the only noninvasive test to look at the pancreas and it’s great for diagnosis purposes but an ERCP is really the only test to see how the pancreas is working BUT it’s a risky test because it can cause a pancreatitis attack, however they use it as treatment purpose too. I have to get ERCPS every other month for treatment to widen my pancreatic ducts. It really depends on your situation. We’re all unique but you definitely can be chronic and not know it. I hope you feel better soon. 
    • sonya_72817
      sonya_72817 Shortie79

      Posted

      Shortie79,

      Wow. What an awful story. I'm really sorry. I must be so full of self pity. Never thinking others understood the agony and how debilitating this condition can be.

      It's a very hard thing to understand if you don't have it. Why you can't work, etc.. Are you still in this horrible pain daily? Do you see a pain specialist? I really hope you aren't suffering with that level of pain everyday. Even an hour is nearly impossible to bear. 

      Be well,

      Sonya

    • Shortie79
      Shortie79 sonya_72817

      Posted

      Sonya, 

      Honestly, each day is different for me. Some days I wake up in horrific pain but some days I may have a dull ache all day.  Unfortunately, I’m in constant pain but I’m a lot better now then before. I try to focus on the positive things instead of the pain. I don’t see a pain specialist anymore. I also have Complex Regional Pain Syndrome (nerve disease) and other medical conditions. I have tried everything possible for treatment, including a spinal cord stimulator which I surgically had removed three months after it was implanted. I’ve had epidurals, spinal blocks, etc. However, I haven’t seen a pain specialist for pancreatitis. I spoke to one of the pancreas specialist which advised me there’s a nerve block they could try. My problem is, I have a condition that makes my nerves misfire and contract my muscles. The prior blocks never helped the pain, and I endured so much pain, in an attempt to gain relief. I don’t want to endure more. When I feel abdominal pain, I stick to drinking two Ensure a day, chicken broth and I eat an orange for a couple days because it helps my pain. I also have a microwaveable heat pack for my stomach. Heat packs are very helpful for the pain either on your back or abdominal pain.  We’re all different though, what works for me, may not work for someone else. In reading the other comments, I wanted to advise you what my pancreas specialist advised me … one acute attack can develop into chronic pancreatitis (this is why ERCPs are no longer used for diagnosis purposes). I asked him how I had chronic when I have never been diagnosed with acute?! That’s when I was advised my condition caused it. My condition is rare, Pancreas Divisum only happens to 5% of the population and is normally discovered in autopsy. My blood work never showed anything all my life (except AST/ALT levels would rise) and I’ve been in/out of the hospital many times. I was advised with chronic it’s typical for your blood work to show normal and in fact, your levels may decrease instead. The GI doctors don’t know that much about the pancreas. They may know some things but my GI thought my symptoms were IBS … I don’t recall the symptoms of IBS off the top of my head but, losing almost 45 pounds within 4 months without trying is a sign something is wrong. Then when the GI saw the scan with atrophy she asked if cystic fibrosis ran in my family because it’s not common for someone my age (at that time I was 37) to get/have pancreas issues. I said no, and it was after that the MRCP was ordered. Even after the MRCP the GI still felt my symptoms were IBS. I asked to see the pancreas specialist and I’m receiving ERCPS as treatment and I guess you can kinda say it’s my pain management. 

    • DJ-RN
      DJ-RN Shortie79

      Posted

      If I remember my pathophysiology correctly, I believe one has to have some form of an acute attack before you enter a chronic form of it. I don’t remember my ever having an acute episode but I’m fairly certain for something to be chronic it first starts as an acute episode. I’ll ask one of the Cardiologists I work with. 

      DJ

  • DJ-RN
    DJ-RN CarebearwsMom

    Posted

    I may have. I had 5 stones develope in the head of my pancreas over time and in 2009 I lost 45 lbs in a matter of months. Everything that I ate went straight through me and my stools were loose, foul and fatty. An US, CT scan and EUS confirmed that I had some type of obstruction. It was learned that I had one 8mm stone occluding the main pancreatic duct and no enzymes were able to reach my small intestines to break down carbohydrates, starches, sugars, protein and fat. They wanted to do a Whipple surgery on me and I said no way. I had a friend who was head in GI at the Mayo Clinic and I sent him my films. Dr’s here were telling me that I wasn’t a candidate for ESWL and ERCP but he seemed to think I was. So did I. I booked a flight and after 3.5 hours trying to shatter that pancreatic stone it finally broke up. The next day I had a ERCP with a temporary stint. I have had no problems since. I regained all my weight back in a matter of months and never took another pancreatic enzyme afterwards. I do have occasional bouts of abdominal/back pain but very seldom. I still have four stones in the head of the pancreas but so far they haven’t increased in size or migrated to an area where another obstruction had happened. I’m watched closely for signs of pancreatic cancer as my chances of getting it increased 30 fold. Perhaps higher even higher given my father passed from it at age 59, and his mother, my grandmother died from complications of pancreatitis. I believe that everyone who has chronic Pancreatitis has to have at least one acute episode for it to turn into chronic Pancreatitis. At least it stands to reason. If I did I wasn’t aware of it. 

    DJ~RN

  • sonya_72817
    sonya_72817 CarebearwsMom

    Posted

    Hey,

    Sorry you have symptoms of chronic pancreatitis. I wouldn't wish it on anyone. 

    Just my 2 cents...

    I've always been told that it only turns chronic after only after multiple times of being acute, as the scar tissue builds up over time after repeated inflammation - which is what causes it to become chronic...  In my case. I had years of acute cases. 

    My original GI doc explained it was like a puzzle to figure out. And I know it's very frustrating. After he did what he could, he admitted me and sent me via ambulance to a hospital with a pancreas specialist. That's the only way I got true help. I will add that in between him doing this, I had about 30 acute cases and kept getting sent home because my lipase wasn't elevated. I'm shocked by how little is really known about the pancreas. I really hope you get it figured out. 

    I've heard that some people have only mild pain while having acute episodes. Is it possible you've had several episodes without knowing? It seems impossible because the pain is a torture chamber, but perhaps you did have them without screaming wicked bad pain? 

    Be well,

    Sonya

  • Reefsider
    Reefsider CarebearwsMom

    Posted

    I was diagnosed with Chronic without being aware of acute episodes which was a bit of a shock. 

    I have another disease I was born with which causes severe acute episodes of abdominal pain associated with other symptoms.  I was hospitalised several times and doc's assumed the other disease although I kept saying it felt different nowhere near as bad.  I only had the abdo pain no steatorrhoea or digestive issues and after 3 days (the usual length of acute attack of other disease, with treatment being fluids and pain management IV), I would be discharged.  So same treatment as for pancreatitis. 

    I must say that I was a reluctant admission because they can't do anything for my other disease and can't manage my pain either so left to my own devices I'd have chosen not to go into hospital.  I'm used to severe pain, I'd have coped but I guess for most people pain at anywhere near the level I experience out of the blue would be a shock and likely prompt an ER visit at least.

    The steatorrhoea I experienced just prior to CP diagnosis was accompanied by a dull stomach ache, nausea and other vague symptoms.  Oh, I also put on weight, go figure.  They were all new symptoms. My GP allows me to request tests after discussion (because I'm so medically weird and know my body pretty well) and she agreed to abdo CT which showed the pancreas calcifications.  After seeing a gastroenterologist who specialises in the pancreas and after reviewing the CT he did an endoscopy which confirmed I have Chronic Pancreatitis.

    I've not ever had an attack as described by most here. I have the steatorrhoea under control mostly, I take enzymes, I need a lot of them, and vitamin supplements I need and have graduated to annual specialist visits in my 2nd year since diagnosis.  I've never taken alcohol and always had a pretty low fat diet because of my other disease.  I'm not typical at all and I'm not sure my experience should be measured as average in your survey Carebear.  

     

    • Shortie79
      Shortie79 Reefsider

      Posted

      Reefsider,

      I’m a little similar to you, in that I’m outside the box when it’s comes to medically weird LOL. I have so many medical conditions, the doctors always blame it on one of them even if the symptoms aren’t related. My primary doctor calls me a medical mystery. I know my body and know when something isn’t right. I have a pain syndrome therefore I have a high tolerance for pain. I’ve had to have a surgery every year from 2002-2016 and some years multiple surgeries, so I’m pretty used to surgical pain as well. When I can’t control the usual daily pain, that’s when I know there’s something else going on. For me it was a process of accepting the pain, once as did that, it helped me a great deal. I focus on anything positive going on in life, which distracts me from the pain. I too have always been on a low fat diet, no alcohol but it was the Pancreas Divisum that caused my chronic pancreatitis. I feel  we’re all unique in our journeys to a diagnosis. 

  • DJ-RN
    DJ-RN CarebearwsMom

    Posted

    One must have at least one acute attack of Pancreatitis before they can go on for it to be chronic in nature. I have chronic calcific Pancreatitis and had 5 stones embedded in the head of my pancreas. A few years back one of those stones (8mm) migrated over and totally occluded my main pancreatic duct. No enzymes were making their way to my small intedtines to break down fats, sugars, carbohydrates, protein etc. I lost almost 50 lbs in a few months. I was told I needed a whopper procedure but I flew to the Mayo Clinic and had ESWL followed by ERCP. Since I have been fine. I do have occasional bouts of pancreatic pain. If you have it you’ll know it. So will your Dr’s. Even though I was never aware of having an acute attack, I did. Since I still have 4 stones in my pancreas that has moved me into the chronic stage. So, you have to have had an acute attack before you can have chronic. 

    DJ~RN

  • yvonne86771
    yvonne86771 CarebearwsMom

    Posted

    Yes I have been diagnosed with chronic Psncreatitis ! CP ... I have Never had Acute ...I stopped drinking 15 year ago ! apparently my pancreas at the later stage in damage caused by my alcohol abuse 15 yr ago The specialist tells me What has happened is by stopping drinking I have slowed the process down this is why i am paying for it now ! If I had continued to drink I wouldn't be here ! I have never had Acute...Also I have large stones in my pancreas Not my duct but my pancreas so can't remove to dangerous..He wants to admit me into Manchester Royal infirmary for 7 to 21 days to sort me out, Medication,dietician Surgeons can see if there is anything! to do !

    He says ill ferl like s new women ... We will see I do understand Diet is massive therefore, I've been putting out on sweets before I'm stopped lol.silly Really but what other treats do I Have !!!

    • rm752
      rm752 yvonne86771

      Posted

      Hi yvonne86771, was the alcohol abuse related to a single binge or multiple? How did they determine your diagnosis?

  • jon5676
    jon5676 CarebearwsMom

    Posted

    I see this is an old post, but was wondering if anybody had any updates on their condition or diagnosis?

    i'm currently awaiting the result of blood and stool samples to see if I have CP, but as previous post, i've never had an acute flare up that i know of. i do have a knotting sensation under my right rib which i've had for 12yrs now, with no pain just cramp like feeling. I've had so many investigations for this condition, I would find it hard to believe its related. Even had gall bladder removed. My stool has been very loose recently and fatty with previous diarrhea over a few months. I've always been looser following GB removal. i'm praying it's celiac or gluten intolerance rather than CP. I wouldnt think it was CP other than for fact i've always drank too much. I go long periods without drinking as i'm a seaman and go away for months sometimes without a drop. i just binge when i get home. Well i did. Not touching another drop, hope it's not too late for me . 44yrs doesn't seem long enough

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