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Abd mild but constant pain, so afraid of PC

Posted , 5 users are following.

mandy40275
mandy40275

Hi all, I’ve been reading the forum for a long while with frustration. I would let my feeling go for at least once.

2 years ago, I started having mild pain in my ruq and the back. It became more like constant, but never too bad. I changed 3 GP and had many times of blood, echo, all came normal. Last summer, I started feeling mild pain in my left rib cage. It came and went. I did CT with contrast and MRI, both normal. So GP doesn’t want to send me to specialist.  4 months ago, I had quite annoying right side pain, I took antibiotics myself and in one week the pain went off. But since then, the pain in left side is going to be worse, building up and remaining almost constant. 

I’m very frustrated as my syndrome is getting worse but doctors can not find out the cause. I also did colonoscopy and gastroscopy, both normal. Sometimes I even get jealous with people who have acute pancreatitis, as the diagnose is straight forward. For my case, I have so much worry for pc as the pain is building up but still not very bad but constant. On Friday I booked another ultrasound but I wonder if it can pick anything.

How I wish I did not have all this...Anyone who could kindly share option and experience would be much appreciated...

1 like, 12 replies

12 Replies

  • Averagejoe01
    Averagejoe01 mandy40275

    Posted

    Hi Mandy,

    I have had most of the same symptoms and same tests minus the colonoscopy as you.  Have you had any stool changes as well? In addition to the ULQ pain I’ve had floating yellowly stools with some weird liquid coming out do them. Yet no answers, and this has been going on since January. I’m thinking of pushing for a SIBO test, and this week I’ll start gluten free to see if it makes any difference. Like you, I am constantly scared of PC.

    • mandy40275
      mandy40275 Averagejoe01

      Posted

      Hi, 

      My stool is quite normal, but I often have a lot gas.  I’m lactose intolerant too. I hope you will find out with your test. Let’s keep in touch. Take care and good luck！

    • mandy40275
      mandy40275 Averagejoe01

      Posted

      Now I go private ultrasound every 3-4 months, as that’s safe method. But yet, it’s difficult for ultrasound to spot pancreatic problem. So I kind of feel going back to original problem: how to reach a proper diagnosis.... 
  • Shortie79
    Shortie79 mandy40275

    Posted

    Anything pancreas related would be difficult to diagnose. It took the doctors over a year to diagnose me. I had blood work, ultrasound and endoscopy all come back normal. I then had a CT Enterography show atrophy of my pancreas. Once the atrophy was found, I was referred to a GI specialist (general doctor cannot help with GI problems, my own doctor advised it’s out of her expertise). The GI ordered a MRCP (special type of MRI). The MRCP revealed I had Pancreas Divisum (rare condition where you’re born with two pancreatic ducts that never fused together). The GI still thought my symptoms were IBS related so I asked to see a pancreas specialist. (My symptoms included, unintended weight loss, nausea, vomiting, hair loss, itching, acid reflux, constipation, pale stools, left side abdominal pain that radiated to my mid back and pain after eating) I’m sure there were more symptoms but my memory is bad and I’m kinda used to everything now. The pancreas specialist ordered an ERCP which confirmed the Pancreas Divisum diagnosis but also diagnosed me with chronic pancreatitis. I had been suffering from pancreatitis symptoms my entire life but my blood work has never showed it. However, my liver enzymes will elevate but nothing else. Furthermore, when it’s chronic your blood won’t show it. There’s many doctors who know about pancreatitis but don’t understand it. You need a pancreas specialist or a GI specialist who specializes in the pancreas. Someone my age (38) is unlikely to get chronic pancreatitis but I got it from the condition I was born with. However unless you have a family history of PC, cystic fibrosis or pancreas issues I wouldn’t stress about it. A CT would catch a tumor and/or your blood work would show cancer. It may not show pancreatitis but it’ll show cancer. However, if you don’t have debilitating pain and I mean pain that makes you belly over and you cannot even walk then I don’t think it’s pancreatitis. The pain is so bad you get scared to eat. I hope you’re able to find answers. It’s important to be your own advocate. I would not be receiving treatment today if I didn’t insist on more tests. I even had an ultrasound say it was all in my head, so don’t give up! 
    • mandy40275
      mandy40275 Shortie79

      Posted

      Hi,

      Thanks for your reply. Sorry to hear your experience. Hope you recover fully!

      My pain is not intense, but guess that’s even more worrisome. I will try to find some examination other than ultrasound... quite helpless for that too, as I live in Holland. There is no private hospital here.

      Take care!

    • Shortie79
      Shortie79 mandy40275

      Posted

      There’s many conditions that mimic pancreatic symptoms. I would ask for an EPI test. It’s a fecal test … sometimes your pancreas has a hard time producing enzymes which can make it hard to digest/absorb foods. There’s also gastroparisis which is where your stomach doesn’t digest food fast enough. They can both cause pain (I developed both) but they’re treatable. As for me, unfortunately there’s no cure for chronic pancreatitis, however it is manageable but because I was born with two pancreatic ducts my specific case will require me to have my pancreas removed. A lot of people think you can’t live without a pancreas but you actually can nowadays. Depending on your case, they can transplant cells into your liver but you will be dependent on insulin and digestive enzymes. I’m actually going to have a celiac nerve block done prior to having my pancreas removed. Due to my age, I don’t want it removed until I cannot handle the pain anymore. There’s also a genetic mutation marker blood test for cancer you can do. Try resting your pancreas for a couple days and see if that helps. You do that by not eating solid foods. Stick to clear liquids and then incorporate Ensure. After a couple days then start to add a low fat and sugar diet back into your schedule. Eat six small meals instead of three big ones. Drink plenty of water as the pancreas loves to be hydrated. Stay clear from caffeine and spicy foods as they may upset your stomach. Also raw veggies may upset your stomach but frozen veggies seem to work. If you don’t notice a change in your pain then I don’t know what would help. I also use heat packs on my stomach and back when I get abdominal pain. I was advised that as we age, our bodies can develop food intolerances. It may be a good idea to journal what you eat and see if there’s any pain when you eat certain foods. I live in the US so healthcare is different here. I have to travel to see my pancreas specialist because there’s no one around my area who specializes in the pancreas and can treat me. You may need to research for one. Good luck. 
    • mandy40275
      mandy40275 Shortie79

      Posted

      Hi, thanks A LOT for the advices. For the diagnosis I can only wait for my GP appointment and hope she can refer me to another hospital. Meanwhile, I’m changing diet. I don’t drink at all, but I usually had many cups coffee. For 2 days I only had a small sip, and it seemed helped a little. I also start to choose food according to FODMAP. It seems more for IBS, but it kind reduced gas. When there is less air in belly, the pain also reduces. 

      79 is also my year. So we are at the same age. Still young and have a great deal to enjoy! (In my case, 2 young kids...) I heard CP is difficult to cure, but there must be some suitable ways for different individual. Maybe your body need a while to adjust and by then you will feel fine. Take care.

    • Shortie79
      Shortie79 mandy40275

      Posted

      With the right foods and lifestyle, chronic pancreatitis is manageable. You can live a long healthy life. 
  • NixKiwiWolf
    NixKiwiWolf mandy40275

    Posted

    Cancer doesn’t always show up in bloods or tests - I should know, as I am now recovering from pancreatic cancer that took a long time to diagnose. I suddenly started suffering from extreme abdominal pain (as in so bad I ended up in A&E a couple,of times), sudden extreme weight loss and general malaise. My blood was normal, my live enzymes were normal, my bowels were normal, my cancer markers were normal - luckily I had a very intuitive GP (I am in the U.K., by the way) who kept sending me for tests. First an endoscopy (completely normal, no H pylori or ulcers), then an ultrasound (gallbladder spotless) but that at least picked up that my pancreas was badly inflamed so I was put onto a pancreatic specialist. Two CTs, two MRCPs, endless blood work and and EUS over nine months only showed that my pancreas was inflamed so I was treated for unexplained chronic pancreatitus. Finally I suddenly became very ill with jaundice and biliary sepsis which landed me in hospital and while fitting a stent to relieve the jaundice they found I had a 5cm cancerous tumour in the head of my pancreas. Luckily it was operable and hadn’t spread anywhere but I was very lucky - usually by this stage it’s too late. 

    All Imwould say is that everyone is different and also that most of the symptoms I see described on these forums can be anything, not necessarily pancreatic cancer. And if you’ve had the symptoms over more than a year and it’s not developed much then the chances of it being cancer are very low. Especially if you’re under 50 (I’m 53, 52 at diagnosis). The best thing you can do is step away from the internet, try to relax and enjoy life, maybe improve your diet and excercise or meditate or what eve works for you and monitor your health without becoming obsessive. Most of the time you won’t have cancer and worrying all the time won’t help your symptoms. If you genuinely feel there’s something wrong, keep pushing for tests but again, don’t obsess about it. It’s a fine line. I suspected I had cancer but I’m no doctor. I had to put faith in those that were and as it turned out,  my consultant was human and didn’t find the cancer until it was ready to be found. Life is a lottery. I won this particular round but who knows what the future holds? The one thing Inlearned is that worrying about it makes absolutely no difference.

    • mandy40275
      mandy40275 NixKiwiWolf

      Posted

      Hi, 

      Thanks for such a truthful reply. I wish you all the best with post surgery process! I’m trying to change my diet, and pushing my GP. Meanwhile I’ll leave scare internet info and focus more on my life. 

    • Bassett1973
      Bassett1973 NixKiwiWolf

      Posted

      Hi NixKiwiWolf

      Sorry to read about your long diagnostic journey, but I am so glad they found your cancer. Did the operation clear up the pancreatitis or do you still have chronic pancreatitis? I have been going through the long process of diagnostic testing for my symptoms, but nothing so far has shown. Today I had a blood test done called a fasting gut hormone test, which looks for neuroendocrine tumours of the pancreas and carcinoid cancers in the gut. 

    • NixKiwiWolf
      NixKiwiWolf Bassett1973

      Posted

      I never had pancreatitus - it was cancer affecting my pancreas which made it inflamed and difficult to diagnose the real problem, especially as everything else was showing up virtually normal. But that was unique to me. If all your tests have shown nothing so far and the symptoms are not getting any worse then maybe have a rest from any more tests. But as I don’t know you or your medical history, I can’t really give you any advice other than you know your own body and how far you want to go with any investigations. 
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