Ongoing stomach and back ache

Posted , 5 users are following.

Still going through tests and really getting me down. So far I’ve had a clear ultrasound which stated pancreas was partially covered by bowel gas, a clear endoscopy. Negative stool culture and normal blood tests. Tomorrow I take the Calprotectin stool test. Would a pancreas disorder show on any of these tests?

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11 Replies

  • Posted

    Not in my experience. I had blood, ultrasound and endoscopy all come back normal. It took a CT Enterography to catch the atrophy of my pancreas. Then a MRCP to get diagnosed with Pancreas Divisum. Once I got that diagnosis then I saw a pancreas specialist who performed an ERCP (which they don’t do for diagnostic purposes only for treatment because of the risks) but the ERCP was what diagnosed me with chronic pancreatitis. Mine was caused from the Pancreas Divisum (congenital abnormality where you’re born with two pancreatic ducts that never fused together which is rare). I have never been diagnosed with acute pancreatitis but I now have chronic. I don’t drink alcohol or anything to that extent but if you do, stay away from it because it will aggravate your pancreas if you do have something going on. I’m going to be honest with you, it’s very difficult to diagnose pancreas problems and it took the doctors over a year to diagnose me. I do have other medical conditions and I believe that hindered my diagnosis because they like to blame things on my other conditions but I know my body and knew something was wrong. I live with pain every day but this pain was unbearable (even on medication). If you think you have pancreas issues then ask for a MRCP, it’s the only noninvasive test they can perform that really looks at your pancreas and how it’s working. I hope you feel better soon. 
  • Posted

    Not in my experience either. Took nearly a year to find out what was wrong with me and it turned out to be pancreatic cancer (thankfully gone now). But the difference is it was obvious something was wrong with my pancreas right from the onset of symptoms, it just took a long time to get to the bottom of it (basically once the tumour had got big enough to see on a scan - I became suddenly very ill with jaundice and biliary sepsis at that point too). Bloods, stool and cancer markers were always within normal ranges and were right through my treatment (apart from when the chemo made my liver grumpy - all good now).

    The only tests that get right into the pancreas for a good look are an EUS or an ERUP and the last is usually once you have a diagnosis as it can cause severe pancreatitus. However, although I had a load of imaging tests, they all showed abnormalities with my pancreas so if your ultrasound is clear, that’s something.

  • Posted

    I know you feel frustrated. But, you seriously need to move on about your pancreas. If you had anything going on with it your Dr’s would already know it and so would you. It doesn’t take a million tests to diagnose pancreatic disorders. If your CT and US along with lab work were all normal, more likely than not it isn’t your pancreas causing your symptoms. 
  • Posted

    I don’t mean to sound insensitive but you’ve had all the tests that would suggest that it isn’t your pancreas that’s the cause of your symptoms. In fact, your symptoms are not All classical to suggest Pancreatitis. I’m sure there’s a Dr. out there who might do an EUS on you, but in my opinion it’s a waste of time and the risks of having one outweighs the benefit. 

    DJRN

    • Posted

      My ultrasound was clear and all bloods clear. This has been the most frustrating few months I’ve ever had. Mucus in the stools and aching has been the most alarming for me. Sent the Calprotectin test off this morning 
    • Posted

      I can relate to what you’re going through. My regular ultrasound stated my symptoms were in my head. None of the tests caught the Pancreas Divisum except the MRCP and with Pancreas Divisum I have two pancreatic ducts (how can that be missed?). I was going through so much agonizing pain without any answers. What type of doctor are you seeing? A primary doctor won’t know what to look for, but a good GI doctor would be able to point you in the right direction. However even some GI doctors have to send you to a pancreas specialist because it’s out of their expertise. I don’t know what a Calprotein test is but I hope it gives you some answers. There’s many conditions that mimic pancreas symptoms. I don’t know if you notice pain more after certain activities but if you do, I would start keeping a journal. It might help you and your doctor figure out the route cause for your pain. 
    • Posted

      Well I certainly wish you only the best. I pray that all of your tests come back normal. Because you certainly don’t want to be diagnosed with any type of pancreatic anomaly. Hopefully it will be something benign in nature and easily treatable. I don’t think that your symptoms are in your head. Something is going on. But, it is possible that they could be psychological. As stress, anxiety and depressive disorders can certainly mimic other physiological illnesses. So, definitely pay close attention to any of the above that I mentioned. Stress has caused me several different symptoms over the years that weren’t physiological. Stress can do a number on one. Just be open to the possibility that it might be psychological and something treatable my friend. 

      DJ~RN

    • Posted

      Wow, I don’t see how they didn’t pickup that with you. It looks like a regular US would have shown two pancreatic ducts. In 2010 I lost 50 pounds in a very short amount of time and my Dr’s didn’t diagnose me until I went from Dr. to Dr. I had 5 calcific Stones in the head of my pancreas. One was in the main pancreatic duct and was 8mm round. It had totally obstructed the duct. No enzymes, lipase, tripase or amylase was making it through to my small intestines so all sugars, protein, carbs, fat etc. were being broken down and absorbed. Everything I ate went straight through me. I had severe steatorreha, diarrhea and foul stools. I looked like I had just gotten out of a concentration camp. I thought I was dying. But, didn’t know what from. After I was diagnosed they told me that I needed a Whipple Surgery or Fre’. As an RN I knew that wasn’t going to happen if I could do anything about it. I checked into ESWL which is lithotripsy done on the pancreas to shatter the stone. Drs told me I wasn’t a candidate. I thought I was. A good friend of mine happened to specialize in that at the Mayo Clinic and I gave him a call. He told me to send him my files and films. A week later he called and said he thought he could help me. I booked a flight to Minnesota and after 3.5 hours trying to shatter it, they were about to give up. One of the techs told the Dr. to give her ten more minuets. Finally it shattered! The next day my friend did an ERCP on me and placed a temporary stint in me. I did great. I was taking 35 pancreatic enzymes a day and after that day I never took another one. I gained my weight back and was soon back to normal. I’ll always have chronic Pancreatitis as 4 stones remain in the head of the pancreas. They do a CT or MRI on me every 6 months as my risk for pancreatic cancer went up 30 fold. I lost my dad to pancreatic cancer at age 59 and his mother to Pancreatitis. So it’s probably even higher. My stones aren’t obstructing anything still thank god. But they can migrate at any time. I have only small bouts of pain every so often and I’m just given 4mg of Dilaudid every 4 to 6 hours for a couple of weeks and clear liquid diet at home. I’m one of 17% who doesn’t experience much pain. My Drs watch me closely. I can say that had I not been an RN I wouldn’t be here today. Or, my story wouldn’t have as well a ending. Everyone has to take charge of their health and get second and third opinions. If you don’t take charge no one else will. That’s a fact. I plead with everyone to keep knocking on doors until you get answers. If you aren’t comfortable with something keep working with it. Cause again, your PCP is overworked and can’t do it as well as yourself. NEVER settle. NEVER think that your Dr. is always right because I’m telling you that they aren’t. I take one day at a time. I’m starting to experience more bouts of pain than usual and I’m sure that’s just part of the disease process altogether. Pancreatitis is a degenerative Disease as all of you know and it is a delicate organ. It doesn’t like anyone or anything to play around with it. If any of you are having problems, again, All I can say to you is NEVER give up. Keep at it until you are pleased with where you are. Take care all of you. 

      DJ~RN

    • Posted

      They performed a regular ultrasound and endoscopy but neither one caught the two pancreatic ducts. Actually neither did the CT Enterography, that scan only caught the atrophy. I always request copies of my reports. Since I’m not a doctor I look up the medical terminology from the reports. I know most doctors don’t tell you everything from the tests/results. My primary doctor didn’t know atrophy of the pancreas was associated with chronic pancreatitis but I had researched the terminology and was then referred to a GI specialist. It was after the atrophy was discovered that the MRCP was ordered but to rule out Pancreas Divisum and lucky me I had it. I was advised it’s normally discovered during autopsy and that 5% of the population are born with it. My first ERCP I had a temporary stent placed and also had an attack afterwards. My 2nd ERCP they removed the stent and cut my ducts to widen them. Fortunately I haven’t had another attack afterwards. Each ERCP now they put a balloon in to dilate my ducts. I go every other month for it and spend a week in the hospital.  Unfortunately with my condition I have pain all the time. I’m fortunate if I don’t lose weight each month. I’m on digestive enzymes but have struggled to gain the 40-50 pounds I loss. We all have our pancreas battles but we all can relate to one another. I’m glad there’s a forum for support. It’s hard to talk to people who cannot relate to what you’ve experienced in one way or another. I wish you the best. 
    • Posted

      Wow, I’m sorry you’ve had so much going on and that you have to do this on a regular basis. I’m so heppy to hear someone take charge of their health, get involved in it by educating themselves to know what’s goung on. Often you will find that you know more about a specific thing than the Dr. does. Again, if I wasn’t an RN with a BS in science and well versed in physiology, pathophysiology and gross anatomy my outcome would not have been the same. I knew that I was a candidate for ERCP. The surgeon just had a major attitude. I’m not one like many of my colleagues who is easily intimidated by anyone, especially a Dr. Lol. I just pray that these four stones in the head of my pancreas don’t grow. Right now my pancreas has adapted to them but as you know, your pancreas is a very finicky. I hope your bouts of pain lessens. I have had a few episodes but nothing like what you have to endure. But I do know the pain you speak of. I put my weight back on by drinking Carnation milk shakes like ensure. But, these have 680 calories per 6 ounces. They aren’t sold in stores because they’re regulated due to their great taste and high caloric count. They are great. I can’t post info about them but if you prvt msg me I will give you the number. It’s like 31.00 a case of 32. I promise you will love them. I got the French vanilla. 680 calories is a lot esp if you drink 3 to 4 a day. I still drink them because they taste so good but I have to watch my weight. They will put pounds on you fast. If interested hit me up. 

      DJ 

  • Posted

    Hi Matthew96778,

    I'm sorry about your ongoing pain. When you have pain and a bunch of unanswered questions. Going through testing, etc.. of course it gets you down. I really am sorry. I think the good news so far is there is no obvious signs of pancreatitis. I don't know for sure what the test you mention could show. I just wanted to give you some support and let you know you I understand. Please write whenever you'd like. Please keep us posted. I'm sorry I don't have answers. 

    Feel better,

    Sonya

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