Pancreas ?

Posted , 6 users are following.

hey guys I've posted my symptoms on here a few months ago in another post.....

I've been having left side back pain for 6 months now......some days it's better.....some days worse....

my question is......if I had pc for 6 months would I still be alive today ?

thanks

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12 Replies

  • Posted

    it would depend how far a long you were and what type of pc it was. however the pain should get worse not just stay the same, in addition you should have other symptoms.

    i have the exact pain you are talking about in the left side i dont even know if i can call it a pain rather a discomfort, ive also had 2 acute pancreatitis attacks, an mrcp at least 6 cts, a pet scan, an mri, and a fecal elaste test. Ive been told by every doctor (including one who specializes in the pancreas) that this is not pc.

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    • Posted

      I had a regular fasting cbc blood work and urine test done 5 months ago and both were normal. I also had several abdominal xrays done which were normal.....

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    • Posted

      i know its scary, we all go through the pc scare but for the majority that is not the case.. I think after 6 months you would be pretty ill and it would be noticeable that, thats what your dealing with...

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  • Posted

    I went through this same process of worst-case scenario as well. Had all the test imaginable and even had my gallbladder removed. After 30+ months I'm pretty sure I would be in bad shape if it was PC.

    Try not to worry, from what folks say PC symptoms tend to get worse with time. Have you had a diagnosis from a doctor yet? CT or MRCP?

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  • Posted

    I only had xrays cbc blood work and urine tested.....all normal

    I've gone the 6 months without taking any pain meds.....

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  • Posted

    I have been in pancreatic hell for a decade. I wasn't diagnosed until 2017. From 2017-2019, I've logged at least 30 in-patient hospital visits, and I have been to a million doctor appointments. Finally getting my act together now that I know what I'm up against.

    But... as bad as it hurts (constantly!!!), it's NOT cancer. Don't jump to conclusions, but do stay on top of it.

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  • Posted

    hey, I remember your post good to hear from you i have also been in pancreas hell for a very long time about 13 years because we were military and lived all over, i can tell you honestly I am constantly surprised how much docs don't understand pancreatitis i just got out of the hospital after a week i could not control my pain or nausea. turns out i have a blood clot in my spleen due to chronic pancreatitis i cant believe e the havoc it causes i used to worry about PC all the time but don't anymore and i really hope you can find some peace and try not to think the worst i know its hard, but it usually turns out to just be inflammation of itself or the organs around it ii was falsely diagnosed with hep b while in japan also almost had my appendix out only ONE doc a surgeon said no lets wait i have seen other organs inflame around it he was right after a fee days on iv fluids and good old Dilaudid he was right no hep b no appendix needing cut out i know im going off on several things my main points are that you should get second (or a million other opinions) After about 100 acute episodes and 500 docs only a handful got it right please try not to let your mind run to the worst it could be just so many other complications

    best wishes ill pray for you

    you will always have us here write anytime

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    • Posted

      @Sonya, I had a blood clot in my portal vein and lost most of my spleen. I hear you!!

      I'm just delighted that we have a community here, even if it's small. Pancreatitis resources are hard to find. We are each other's best resource.

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    • Posted

      oh im so sorry! we have a lot in common with our histories. how did you lose most of your spleen?

      yes, totally agree i love this site, and how great everyone is we live with something many dont understand i have been wanting to ask about your next move i really cant take this pain and am wondering what surgery might help i asked every doc the week i just spent in the hospital every single one said not to take out my pancreas that i will likely have diabetes and then renal failure try to get by with my pain meds it seems like picking tge least worse option. i see GI tomorrow to see what they are going to do with this clot. even though they said i would have to be on blood thinners they discharged me without a script im in so much agony i really cant wait to hear what they told you. I would appreciate your advice/thoughts.

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    • Posted

      I spent two weeks in the hospital after getting a clot in my portal vein. It suffocated most of my spleen. It literally brought me to the ground from pain, and the ambulance found me in my front yard, facedown. Awful.

      While in hospital, I was on Argatroban instead of Heparin, because there was concern that I might be allergic to Heparin. I'm on blood thinners now (first Warfarin for many months, then switched to Eliquis). My understanding is that Eliquis does not help with PVT, only with DVT, but I have clotting issues (Factor V Leiden), and I'm a smoker. Thus, I stick with it and visit my hematologist regularly.

      I am surprised the doctors didn't give you anything for pain. I'd suggest you go back to the ER and beg. Hate to say it, but you might find a more sympathetic physician. Only once have I been forced to go back after discharge, and they kept me another week.

      As for next steps, I am midway through 6 months of sobriety, at which point I qualify for Islet Transplant. It involves removing the pancreas, but taking islet cells and putting them into the portal vein and hoping they grow and produce insulin. The idea is to avoid brittle diabetes.

      Because of my previous clot, I had a Doppler scan to check for damage in the portal vein. We (surgeon) will have to be extremely careful to monitor pressure in the portal vein during islet surgery to avoid blowing it out. If it blows, brittle diabetes is very likely.

      I'd suggest talking to surgeons at UCSF or Dr. Desai (my surgeon) at UNC Chapel Hill to learn more about islet. It's pretty exciting stuff, and not as scary as pancreatic removal without islet. You can have your records sent and have your situation evaluated from afar.

      I'm sorry I can't help re: renal failure. All I can say is to quit drinking and let the liver and kidneys try to recover. And get regular blood tests and scans.

      Please let us know how things go. I know how awful it can be...

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    • Posted

      One other thing... I've nearly given up hope of surviving with just pain medication. I can't get anyone to prescribe opiods, and I can't get into a pain clinic. Hospital is my only option for meaningful relief. Truly sucks.

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