I need help and advise.

Posted , 7 users are following.

43 female

On 1/2/17 I went to ER with severe and acute abdominal pain. It started on 1/1 and after 24 hrs went to ER. CT with contrast of abdomin/pelvic was normal. Blood work normal elivated bilirubin 1.3. On 1/10 followed up w:primary dr. Ordered chest X-rays& blood work. Normal except bilirubin 1.1. Told me go see GI. GI on 1/15. Symptoms were gurgling stomach, pain under rib cage left side. Ordered endoscopy and had on 1/20. Biopsied for celiac, hpylori and Imflamation. Results on 1/30 normal sent me for ultrasound of abdomen and blood work. All came back normal but elivated bilirubin now 1,4. GI won't see me wants me to go have HIDA scan with CCK first. Still having pain and very nauseous. I told the nurse I think it's my pancreas. She said pain radiate he wants to check your gallbladder function and bile ducts. Meanwhile sick, absolutely drained no energy, nauseous and contact gurgling after eat. Considering switching GI Dr. I can't even talk to him and I am getting weaker not better. Please us this cancer? Anyone have any idea what I should do?

0 likes, 13 replies

13 Replies

  • Posted

    Are you jaundiced at all? It doesn't sound like cancer but I'm not a doctor. I do, however, have pancreatitus and know it is very difficult to diagnose and presents in all sorts of ways. Keep pushing your doctor - don't be shy. Are you in the U.K.? I don't know how the medical system works in other countries. I was lucky to have to good GP who pushed for lots of tests and got me onto a pancreas specialist.

  • Posted

    I know it's scary but don't let your imagination rule, we tend to imagine far worse than the reality most of the time.

    You've been attended to quite quickly and thoroughly it seems and I suggest you continue with the tests as the GI is still checking you out given he wants you to have the hida scan.

    Anxiety can increase symptoms so try not to worry, just get on with the tests and await the result.  If the tests come back normal and you're not satisfied and still sick, push then, not yet.

    In the meantime, eat a low fat diet, avoid red meat, drink water, no alcohol.  Eat small meals more frequently, easier to cope with than large meals.  Be serious about the low fat diet it really makes digestion easier if you do have pancreas issues and will make you feel a lot better.

  • Posted

    Hi, sorry to hear you not feeling well. Sounds like your being treated correctly and I agree with Reefsider....try not to stress and think positive. Internet can be very scary!!! Docs ordering all the right tests. Hida scan is super difficult to get approved and great that your going to have this done and as quickly as well. You want to rule everything out before having this diagnosed as pancreatis. Gall Bladder is key to understanding why if you do. Wat were your lipase levels in your blood work when you were in the hospital? Critical to know these levels and amylase. Good luck and let us know how things turn out. Misdiagnosed for 7 years- 43 female
    • Posted

      Hi Mary Kate. Thank you for responding. Lipase was 174. Not sure what Amylase is?
    • Posted

      Lipase and Amylase are two enzymes the pancreas produces to help digest food.  The levels go up in cases of pancreatitis.  174 is high, as the "normal" range tops out at 50.  Your diet can effect how you are feeling.  I'm in the midst of a "flare-up" having had one severe acute attack about 14 months ago.  My GP put me on a clear liquid diet to help with the gas and heartburn I'm suffering right now.  After 3 days, I have started reintroducing food (like no-fat yogurt smoothies made with banana and a dollop of honey, oatmeal, simple chicken broth with chicken and noodles (using up a supply of broth from the clear liquid diet stage), etc.  The whole diet must avoid fat as much as possible (no butter, margarine, cheese, chocolate, olive oil, etc. Also no alcohol, and while having symptoms, avoid processed foods as much as possible.)  When I "thought" I'd recovered (before this flare up) I was trying to keep fat intake down to 20 or fewer grams per day.  (Foods in the US carry lables that tell you how many grams per serving -- you can also look up that info for foods you make at home.)   I have an appt with a GI in 10 days -- I'm hoping my symptoms will have subsided by then.  I guess I'm coming to the realization that I'll have to live with this for the rest of my life.  I just hope it hasn't turned into chronic as living with this stomach/back pain is very frustrating.  I might feel good enough to function normally during the day, but when I go to bed, it seems to get worse. 

      If you have the option to see a different doctor, do so.  It will give you peace of mind, even if they confirm what you current dr. is telling you.  Good luck.

    • Posted

      Hi Diane

      Thanks for the response. According to my blood work chart is stated lipase range 74-393 is average range. Mine is 174 so I'm confused by you stating it elevated. Also freaking out that there is a blockage in my pancreas or even worse. I don't k ow how people go about their day, with no answers. I'm like a zombie worried. How did that determine you only had pancreatitis?

    • Posted

      OK -- could be using different scales (I'm in the US).   When I had the acute attack (and it was an "attack" as I fainted at a walk-in clinic where I went because of the horrible stomach pain, so they called an ambulance to take me to the hospital immediately).  First they had to rule out that it was a heart attack (as women sometimes show "indegistion" symptoms when it is heart), then they did a sonogram, to see if it was gall stones or appendicitis, and finally they did a CAT scan to check the pancreas.  My father died at age 67 of pancreatic cancer, and that was a fear of mine, but my blood counts were fine (white cells would be dramatically higher in the case of cancer.)   At the same time, one of my high school friends had spent about 6 month in Intensive Care as her pancreas had gone "necrotic" and it was impacting nearly all her other organs.  Eventually, her pancreas was removed, and after over a year in the hospital, she finally went home and is recovering from all that.  My doctor knows both of these concerns of mine, and told me that compared to my friend's experience, my acute pancreatitis attack was caught early enough so as not to progress to that state.  I know I'm lucky, and my friend's fight made her my idol.  It isn't hard to know I won't ever drink wine or eat cheese or chocolate again, knowing her experience!    

      Not knowing your diagnosis for certain, would be frightening.  I had heard of people never having another acute episode, and was doing so well (although keeping to the prescribed low-fat, no alcohol diet) that after a year I thought I was one of those people.   Well, I guess not, now.  But at least I have the idea that I will be able to manage it.  After about 3 weeks of (very minor, in comparison) stomach and back pain, and lots of gas and heardburn (which is tapering off), I just hope it WILL calm down and this current discomfort isn't going to continue for years.

    • Posted

      Diane I'm in US too. Weird but according to my range I'm in the middle w/lipase. Thank you for responding, I have been a wreck and anyone to talk to with similar pain discomfort makes me feel connected not alone. I am going to try the liquid diet. My GI is horrible and I'm in the process of finding a new one. He won't see me until all testing has been completed. Meanwhile I have had two trips to ER and they keep repeating same tests. Blood work, CT scan of abdomin w/contrast and ultrasound. They send me on my way with medication and tell me to follow up w/GI. I have the HIDA Scan on Monday so I'm very curious and anxious. I just have pain under left rib and sounds like a wash machine in my stomach with constant swishing sounds. Oh well thank you again

    • Posted

      OK.  Well, I'm not sure what your number represents, but on the scale used by your practitioners, if they say it's in the middle, it probably is.  Still pain, is pain, and there's GOT to be something to help stop it.  

      Duke Med puts the standard range for Lipase at 17-51 U/L (whatever that means).  Amylase is 31-119 U/L.  My Lipase during this flare up (which is no where near as painful as the acute attack) is 54.  My Amylase is 38.  During the acute attack, the Amylase was 1300, and Lipase was in the standard range.  Pancreatitis, as someone said earlier, can "present" in many ways, mimicing appendicitis or gall stones.  

      One other thing - My regular Dr told me to stop using Ibuprophen as pain reliever, as it could have been making the gas and bloating worse.  I've been taking Tylenol instead this past week, and that could be helping a bit as well as the diet.

      I am SO fortunate to have excellent care nearby.  Good luck, and I'm glad having someone else to "talk" with helps a bit.  I agree, it does.  Pain that doesn't go away is maddening.

    • Posted

      Hi Diane

      Hope ur feeling better.... I just came across ur comments, can u plz tell me do u experience any other symptoms like foul smelling stools? Sudden onset of diabetes or yellowish eyes?

    • Posted

      No - Throughout all this I've not had any of those problems.  If anything, I get slightly constipated, but nothing terribly unusual.  

      Results from an MRI I had on Monday conclude that this is chronic pancreatitis.   Now I am trying to get in to talk to someone to see where we go from here, and if there is a chance I can expect to manage the pain so that I might be able to carry on a fairly normal life, with occasional flare-ups. Also, if it makes sense to cancel a 20-day trip overseas we've been planning for May.  I'm not sure I really want to be out of the country if I'll be experience the current level of pain.  Last night was relatively great -- I slept from about midnight to 5:45, was awakened with pain, toook two tylenol and drank a glass of water, and went back to sleep until 8!  

    • Posted

      Hello, I'm new the group & to the pancreatitis. Had my first k,ow attack his week. I say "known" because I think I have been misdiagnosed for years. This was the worst I've ever experienced. My question for you is, do you work? I was fortunate to be off work when happen. I'm afraid to go back to work because of pain.

      Hope you are feeling better!

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