I've been diagnosed with acute necrosis of the pancreas of the last 10 weeks.it started with severe

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Well in d begging I had severe abdomen pain with smoderate back pain(all over back and shoulders a side pain)my worry now is I have no abdomen pain just severe middle back pain sometimes the shoulders also,like a stabbing pain,I'm seeing a surgeon this week to see will the nercrotic part of my pancreas be drained?.my main worry is why do I have all this back pain and none in my abdomen,I'm worried sick its cancer,could anyone please tell me if it's normal with acute necrosis pancreatitis to just have stabbing pain in my back.please I'm desperate.I'm 39 with 2 young boys who need their mammy,any suggestions atall wud be greatly appreciated.Thanks all.

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  • Posted

    Sorry I forgot to say I was hospitalized 10 weeks ago with acute necrosis of the pancreas,my apologies.please help im driving myself crazy,also had ct scans,so if it was cancer wud they see it.

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  • Posted

    Denise CT's are very good at showing abnormalities and it's a good thing you're seeing the surgeon this week. If the pains are getting worse you might have an infection so you might want to see your doctor or go to the ER if you're worried prior to your appt.

    It sounds like you're experiencing an acute pancreatitis attack at the moment which might be the reason the pain is worse.

    Make sure you only eat small amounts of low fat food and drink more water if you can bear to eat at all. During an acute attack it's sometimes best to not eat at all for a day or two, just take sips of clear fluids that are easier to digest. You need to increase your fluids during this time. You may find the pain decreases.

    Attacks can be very painful but that doesn't mean you have cancer. It sounds like you have had tests so trust your doctors.

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    • Posted

      thank you so much for your advice,I will stop solid eating today,not that I have been able to eat much lately.Just plenty of fluids as u said.hopefully its just a flare and I will know more nxt wk.regarding your advice on d er ,the last time I went over they said I was wasting my time and theirs as I will have to go through d pain with meds until I see the surgeon nxt wk.Just need to trust my doctors more I suppose but its hard when things change so much in such a short time u start to think its cancer and all things.thank you again for your advice and ur reply,I really do appreciate it.

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    You're welcome Denise and I'm sorry you had a bad experience at the ER. I've had a very bad experience too, many of us have and it's just awful.

    Unfortunately many, including gastroenterologists, don't understand pancreatic disorders in depth and is why many of us here advise people to find a gastroenterologist who specialises in the pancreas. They exist you just have to ask around. See how you go with the surgeon, perhaps ask for a referral to a pancreas specialist whilst there if you're unhappy with your current medico.

    Whilst attacks can be serious, even life threatening, most can be managed but I must say I'm surprised, because of the necrosis, that your situation wasn't assessed more closely. Infections are a real possibility and need to be dealt with promptly. Hopefully you had documentation with you or you're a patient at the hospital you went to so your history can be viewed.

    Just appearing at an ER writhing in agony doesn't cut it these days with everyone so concerned about pain killer addictions. That attitude doesn't help those in real pain. I wish you well.

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    • Posted

      hi,I just wanted to say,yes d hospital know my situation regarding my nercrotic pancreas,when I said they told me in d er to go home and take my meds that was not d problem,the problem I had (sometimes still have) is d pain medication I'm on don't seem to be working aswell that's why I thought it might be cancer,I really appreciate your comment about people needing pain medication myself inncluded its just they only seem to work sometimes.I'm seeing the surgeon nxt wk and he has my file so hopefully they will do something.Thanks again for your advice.

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    • Posted

      me again re pain. Every situation is unique when it comes to pain management. Pain management clinics tend to treat the individual and tailor medications/therapies etc to suit each person rather than base their treatment on a generic formula.

      After your current situation is sorted surgically (assuming this is the current thinking for you) you may not require an increase in your pain management. If you do don't dismiss a pain management clinic.

      I was born with a disease which is arguably one of the most painful known in medicine. It is thought to have triggered my Chronic Pancreatitis, it being a rare complication.

      Fortunately I taught myself how to manage, to a degree, the pain I experienced with that disease using various strategies, although I was sedated in hospital for a few days/week when it got out of control and other complications required management. Medications have never worked for that pain including opiates which are the default drugs prescribed for us.

      I was told way back then as a small child that sometimes the brain can fixate, go into spasm if you like and the trick is to break that spasm. Drugs tend not to work in that situation, they don't override the spasm, and can in fact have a paradoxical effect, make the pain worse.

      So what to do... It was fortunate I was so young really, an innocent child is more open to mind tricks and that's what I taught myself to do. I had many strategies which I continue to use. Unfortunately in our current society we grow up believing there is a pill for everything so using other methods is often rejected. I wish we were taught to be more open to other possibilities. Pain management clinics can help in this regard I've been told although they also use drugs, or a combination, it depends on the situation. The moral of this story is to not believe there is only one solution.

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    • Posted

      hi I'm so sorry about your situation and being so young having this terrible disease,regarding myself I'm on the waiting list for a pain management clinic to ascess my pain control,hopefully they will do surgery and I won't need a pain increase I'll do what they advise,by d way what are your coping mechanism for when u get a bad flare up,if u don't mind me asking,also would it be possible for me to let you no what they said and for you to help me regarding what they say on Thursday.IT is good to talk to somebody that knows what their talking about.I'm really appreciative of all that you have said.Anything you could do to help,I just feel so lost in this,not knowing what to do or expect.thank you for your advice.hopefully I'll hear from you soon,if not I'll understand that you have your own battles to fight without me adding to your trouble.wishing you all the best and so glad u can trick d mind as u say.best wishes.Thanks again.

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    • Posted

      Denise, Do you have good insurance? Well get it now. Your treatment at facilities gets better for the well-insured. Sorry, its just true.

      Kris

      Has any one mentioned biopsy? Ask for it, or I would.

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    • Posted

      hi Kris,just wondering why would you ask for a biopsy,do you think its something more than pancreatitis,sorry for the question,but I'm just worried asto why u would ask for this

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    • Posted

      Don't worry too much about cancer. It's just good to check all bases early. It can take a long time to see a doctor, so you might as well make use of them while you have their attention.

      I do hope you are feeling somewhat better and that you can get some help with your pain management. Hang in there.

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    • Posted

      Thanks vedawns,its just when usaid a biopsy I started to think it maybe cancer.I'm seeing a gi surgeon tommorow.which is good but my god I was in agony all last night with severe back pain and now a sharp pain going across my upper middle chest,I don't no if its from the worry about seeing the doctor or not but I took some painkillers and I'm still in agony,could u please advise what questions I should ask the doctor when I go.I no the obvious ones but I don't want to come accross as a hyparcondriac.please,cause I actually feel like I'm dying,also I took some duphlax yesterday cause I'm constipated,do you think that would have made my pain worse.??thank you for replying,I really do appreciate it.Denise.

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    • Posted

      As far as questions... ask what surgical options are possible. If you are in the UK, your options will be limited somewhat by your medical system. Surgery may not even be an option.

      Ask if they will be doing an MRCP, ERCP or EUS to see what is going on.

      Ask what you can do for pain control. Do not leave without adequate pain control.

      Also see if you can get nausea medications, and ask if you need digestive enzymes.

      Ask about what diet you should follow.

      That's all I can think of right now.

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    • Posted

      Thanks vedawn,sorry only wish id seen ur post this morning.well d surgeon said d ct has shown d collection in my pancres is reduced so not a candidate for drainage,she said it wud be too dangerous,as for d severe pain in my back,I asked her wud d ct show if it was cancer and she said it wouldn't 100% show also I asked her for a ca 19_9blood tests to see if its cancer and she done all blood tests so that's good ill no d results in 2 weeks,also I said how come d back pain is so severe and getting worse and she said it just cud be bad episode of chronic pancreatitis??? she ordered an mri for 2 wks time.She gave me ensure drinks as I'm getting no nutrients from not eating also an appointment with a dietician and an appointment with pain management.Also in d meantime she said to take my oxycodene and prescribed me gabapentin.Sorry for d long post.Id love to hear ur advice on all she did and would she have given me d mri sooner if she thought it was cancer also do u no anything about gabapentin?? your thoughts and advice would be greatly appreciated.thank you.Denise.

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