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Undiagnosed Chronic Pancreatitis

Posted , 8 users are following.

ashtnren
ashtnren

For the past year I have been battling upper right quadrant pain. It is not severe, just more annoying. It feels as if someone is pulling apart my ab muscle and has point touch tenderness. Since June 2017 I have had multiple abdominal sonograms (the most recent being a couple of weeks ago),a  CT scan, and too many blood panels to even count. This pain has now also moved to my left upper quadrant , and both shoulder blades feel tender. I have constipation (maybe go once a week), and when I do go it has red blood or mucus in it (TMI I know). All of my test have come back clear. My doctors look at me like im insane. The only diagnosis I have been given is IBS ,but my gut feeling says its more than that. I really feel like I have Chronic Pancreatitis ( I am a weekend social drunker).I have heard Chronic Pancreatitis does not always show in your blood work. Where should I go from here? Anyone out there with similar experiences? 

1 like, 12 replies

12 Replies

  • kluesy
    kluesy ashtnren

    Posted

    Hello ashtren. I have went down this path for the past 2 years and had my gallbladder removed only to not have any answers yet as well (2 CT scans, 6 liver panels, MRCP, 2 external ultrasounds). My pain is a dull, almost bruised-like pain under my right rib with referred pain between the shoulder blades. If I watch what I eat (no fat, caffeine, alcohol), I can stay pretty much pain-free, while also taking pancreatic enzymes for digestion. Have you noticed the pain being triggered by certain foods, such as fatty foods? 

    Also, the fact that you have been constipated and that you have been bleeding suggests you should maybe have your colon checked. Problems in the transverse colon can cause pain under the ribs, and this would be consistent with the constipation and bleeding. Red blood suggests bleeding in the colon/rectum, as bleeding higher up in the GI tract tends to be dark brown or black in your stool. CT scans cannot see into the colon very well, it is best to do a colonoscopy. I had one of these at the ripe age of 34 (trying to find out what is causing my pain), and it was a blessing in disguise as I had a pre-cancerous polyp growing in my transverse colon. If your symptoms are not influenced by what you eat you may be fighting some sort of colon inflammation or diverticulitis, etc. Bleeding could be due to hemorrhoids as you are constipated. Also, I am not a doctor, so don't take this as medical advice.... However, I am surprised your doctors have not suggested a colonoscopy yet. 

    • ashtnren
      ashtnren kluesy

      Posted

      Thanks for the advice. I actually had a colonoscopy last summer when all of this started in the first place (that’s when I was diagnosed with IBS). Everything came out clear with the exception of a small polyp that had to be removed. 
    • kluesy
      kluesy ashtnren

      Posted

      Congrats on the clear colonoscopy. Are you affected by foods? Pain with fatty meals, alcohol etc? I agree with Shortie in that an MRCP may be the next best non-intrusive test. I had this done back in April and it was easy. Showed my ducts looked fine, which I guess is a good thing. I'm thinking the next test for me will be an EUS, however this if a more intrusive test. 

      Have you had a HIDA scan done for your gallbladder yet? If it is non-functioning or diseased, it could be causing your pain. I had one done and I came back hyperactive, so they removed mine. Turns out that wasn't what was causing pain, but for a lot of folks it's the gallbladder under the right rib and upper right back. Also, you mentioned weekend drinking, but from what I have read it takes years of chronic high alcohol consumption (e.g. 5-10 years) to get to the point of alcoholic chronic pancreatitis. 

      I am also thinking about sphincter of oddi dysfunction. If you do some reading on this it can cause a lot of the same symptoms as chronic pancreatitis, and is also thought to cause it in some individuals. 

    • ashtnren
      ashtnren kluesy

      Posted

      I have not had a HIDA scan but most recent sonogram indicated the gallbladder look normal. I don’t not feel the pain immediately after eating, it’s honestly random. It is alleviated when I lay down.most recently my biggest complaint is my back- all the upper muscles in it are tender to touch. For the most part lately my abdominal pain is only if I press on it. I did some more blood work today and will ask the Gastro about the Sphincter of Oddi (I haven’t ever heard of that). As for my drinking habits I’ve been a social drinker since I was about 20 (I’m 30 now). I def drank more back in my college days but these days it’s usually a few glasses of wine/beer on Friday and Saturday. 
    • kluesy
      kluesy ashtnren

      Posted

      That's interesting that it is not tied to what you eat. Most of the time it seems gallbladder issues and pancreatic issues/pain can be tied to fatty meals, as those are what strain the organs the most as they have to release a lot of bile (gallbladder) and enzymes (pancreas). If you are only passing stool once a week then this maybe the cause of the pain-- that seems like a long time to go without "going". I think the most I have ever gone was 3-4 days after my surgery, and I felt terrible and had lots of gut pain. 

    • Shortie79
      Shortie79 ashtnren

      Posted

      Are you having any other symptoms? Usually with pancreatitis there’s a slew of symptoms … nausea, vomiting, weight loss, heartburn, migraines, itching, are some of the few ones not associated with pain. Normally there’s diarrhea or fatty stool but when the pancreas is inflamed and the duct is clogged the stool turns clay pale color. I developed gastroparesis (slow digestion) and suffer with constipation which is a separate issue from my pancreas issues. I don’t have my gallbladder anymore but I remember having horrible nausea/vomiting all day, fever almost flu like symptoms and when they pressed on my stomach I had enough pain to make me actually make a sound. Funny thing is that I didn’t go to the ER for abdominal pain, I actually went to the ER because I thought I had an ear infection. The pain was radiating down my neck. I had to have emergency surgery the next day because I had gallstones laying on my pancreas. I was feeling referred pain. Pay attention to your fat intake. If it is your pancreas then you have to stick to a low fat and sugar lifestyle. If you feel pain then rest your pancreas. You do this by not eating solid foods for a couple days stick to clear broth and ensure drink. Slowly incorporate food. Eat six small meals rather than three big ones. It’s easier for the stomach to digest. Frozen veggies are easier on the stomach. I would try heat packs on your back and abdominal pain. Oranges are natural anti-inflammatories, I eat one a day and it actually helps with my pancreas pain. I was surprised to notice a difference when the doctor suggested it. However juice is different, that has artificial sugars. I would journal your food and see if you notice any triggers. 
    • ashtnren
      ashtnren Shortie79

      Posted

      I haven’t not had any of those other symptoms you mentioned just the abdominal and back pain. At first I thought it was my gallbladder since it started on the right side but latest sonogram shows that to be looking fine? This pain has been occurring off and on the past year but this is the first time my back has been involved.
  • Shortie79
    Shortie79 ashtnren

    Posted

    Ask for a MRCP. It’s the only noninvasive test that looks at the pancreas. I would also ask for an EPI test (fecal) it measures how much you digest/absorb fats, etc. I went through a battle of tests before my diagnosis. I have a rare pancreas condition that caused chronic pancreatitis. Only the MRCP found my two pancreatic ducts out of all my tests. My blood work has never showed anything pancreas related. I have never been diagnosed with acute pancreatitis but I have chronic. Be your own advocate and don’t give up. 
  • mandy40275
    mandy40275 ashtnren

    Posted

    Hi,

    I had similar experience, pain starting right side and now on left, and sometimes constipation.  Also did quite a few tests and ultrasound scans with normal results. I kind of gave up on looking for an exact cause. But I found avoiding coffee, alcohol, and high FODMAP food helps pain.

    Everyone has his/her own attitude towards life. I can only say that I’m trying to relax with health issue, as life is so unpredictable. Good luck!

  • HumanBeing
    HumanBeing ashtnren

    Posted

    Dont take my word for it but if your abdominal pain feels like muscular pain then it most probably is not related to pancreas.
  • judith50134
    judith50134 ashtnren

    Posted

    I was diagnosed with chronic pancreatitus in June 2016. My husband insisted I go to the ER as I had severe pain in my left shoulder, down my left arm and left jaw. I thought I was having a heart attack. I had the same symptoms in 2015 and went to the ER then and they did all tests related to the heart, but my heart was ok. When I went in 2016 the ER doctor said something was causing this pain and decided to do more extensive blood work and put me on IV feeding and kept me overnight. My lipase was 5 times the normal levels. The gastro doctor thought I had acute pancreatitis, but a few weeks later further tests were done and they found an abundance of calcium deposits in the tail and body of my pancreas. I was totally schocked as I don't smoke and I only have 1 or 2 drinks per week. I completely stopped alcohol of any kind. I was diagnosed with Idiopathic chronic pancreatitus, but now they are not sure as I recently was diagnosed with Sjorgren disease which is auto immune disease. There is also Auto Immune Pancreatitus so they are on the fence as to what caused this issue. I mostly just feel uncomfortable and not in severe pain. My back bothers me the most, but two Advil usually takes care of that.  You may not have pancreatitus, but I would ask a gastroenterologist to take a look at your pancreas and gall bladder to be sure. I would also ask about taking a probiotic every day as it helped me with constipation issues. Best of luck to you and hopefully you will get some answers soon.

     

    • ashtnren
      ashtnren judith50134

      Posted

      Thanks Judith. I just got my blood work results back from the BUN, Lipase, and Amylase and its all showing normal. What test did they use to find the calcium deposits? Was it CT?  I begged my gastro when she called me with the results to do further testing such as fecal or MRCP ( I had a CT done this time last year) ,and she said she felt that I have been googling too much and that she is in no way concerned about this being CP. She said it is severe IBS. I am really thinking about getting a second opinion because that diagnosis isnt sitting right with me. 
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