HELP!!!Cause doctors cant

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Six months ago I had 6 days of the worst pain in my life, I had every test done. My lipase was very high and i was diagnosed with pancreantitis, they did an ercg and widened my drainage duct. It's been 8 months and 6 days ago i started having the attacks again, Lipase was slightly elevated 92, but they took the blood after the attack. I had a cat skan done today and they say there is no inflamaton of the pancreas. Ultra sound shows a little sludge in gall bladder but no stones, So one doctor rules out pancretitis and wants to find whats going on. The pain is on my left side below ribcage and it is the worst pain i hae ever felt, I cant eat or drink, and i am fed up with these doctors telling me nothing is wrong. What can I do? I know its my pancreas flaring up, but what is casuing it and why cant the doctors ever figure it out. 

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  • Posted

    Definitely get a second opinion from a specialist at a larger research institute. Find out which one your health insurance will cover.
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  • Posted

    I agree with JoBlack, you need to demand a specialist, like a top notch gastroenterologist  ...I know when you feel awful its hard to be proactive but the more you demand the more you will get. My husband was in the hospital for 3 months with pancreatitis and they were unable to come up with plans, diagnosis, etc but I made a scene and you would be surprised how much it helped.  You have to be your own advocate.  Good luck and God bless  Its an awful disease
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  • Posted

    Hi, Im also having problems and the doctors can't find what's wrong with me.

    A year ago now , I started getting electric shock type pain in between my shoulder blades, and mid back... I didn't have a bad back just these random pains. I then had a few days of a strong nausea feeling.

    I then got pain in my throat around my vocal cords ( which is still there now a year on. )

    6 months of these pain I tgen got horrendous abdominal pain, It was straight across my mid belly area, then it was high up in my abdomin under my breast bone... it was like a strong dull ache which radiated through to my back.... It lasted 3 1/2 weeks non stop. It was worse at night and when I was laying down. I got very little sleep all that month, was terrible pain I went to a&e and all bloods were normal, so they sent me home.

    I was at my gps office a lot over the next few weeks, crying and doubled over, they sent me back in via ambulance when I fell over with the pain and cut all my face.

    Specialists came to see me and listened to my symptoms, they said they wanted to do a ct on my pancreas. ( I thought it was my pancreas anyway as I had googled my symptoms.)

    Scan came back normal, so they sent me home the next day.

    I'm totally convinced this is my pancreas so I paid private, I've had an mri, which came bk normal, I kept going bk to the specalist and he checked my scans again and said my pancreas did look plumper than they usually look.

    I demanded a eus which is the gold standard scan for looking at the pancreas ( I was worried it was a Tumor) that also came back normal. Nothing was mentioned about my pancreas looking plump.

    I've hit a dead end now. The electric shock pains are everywhere now, in my legs mainly knees, elbows back ect, I wake up some morning with pain all down my left side like iv been kicked in the ribs.

    I get pain in shoulder blades if I take a deep breath. I get pain on my right side as well sometimes which sometimes radiates to my right shoulder and make the front of my shoulder ache.

    Amazing how I can have so many symptoms but nothing can be found..

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    • Posted

      hi Babalishous; you have a gallbladder bile issue. I know this; as i have experienced 7 years of it; though i have found the solution!!!! smile [as well as teh electric shocks!] GP's left me on codeine and that didn't work!! diagnosed ibs; i was sent away to suffer. ] You can buy me a fruitjuice one day!!! hhahahhahhh

      If you are currently distended abdomen (believe you me i know how it affects your pancreas and abdomen and back and dshoulders etc.

      Firstly i want to tell you that it took me a long time (at least 5 months)  to remedy my diet; to address reparing cells. So if this doesn't work straight off; be patient. but something tells me it will relive pain in days and weeks.

      Solution; bicarbonate of soda (one time and NO milk for the duration or 24 hour period). This will assist with gallbladder pain.

      Reduce cholesterol and take anti-inflammatories (garlic/ the list is huge/ or boswellia serrata (not tested by me); eat veg (try a veg juice diet) take viatmin supplments (all of the main ones) and soluble paracetamol. Take a digestive enzyme to help absorb nutrients and food in teh interim. (Q10 from a health food shop); which also helps in diegesting fats.

      The issue is acid realted/ liver related that has affected the gallbladder which also affects the pancreas and the bowel.. you can 'repair' liver cells by taking MILK Thistle and you can reduce the cholesterol in your body by taking psylium husks - but this is secondary to it's main use; and when bile is excreted ; your liver then uses up more choleseterol to make more bile; this reduces your cholesterol levels.  Basically -  you need a better diet.. and to address the PH levels in your stomach.  let me know your thoughts; and it is VERY helpful to others on this forum to know if you find relief / assitance frm this information.

      The liver stores fat; and uses the cholesterol to make bile (one of it's 500 plus jobs).. excess stomach acid / bile acid then affects the gallbladder- and in turn the inflammation occurs;  you may end up with fat deposits in your eyes if you have too much cholesterol floating around;

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    • Posted

      *forgot to mention - that if the bicarb works; you need to get a PPI from your GP for longer term use.. (protein inhibitor).

       

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    • Posted

      Hi thanks for the reply.

      I'm on a very clean eating diet now, low fat and cut sugar out... Minimal bread pasta ect... I was on omoprazole and lamoprazole for months and months when this all stared and had the acid test and it was normal and the tablets didn't do anything and things got worse.

      Did u have the electric shock pains in your arms and legs as well ? X

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  • Posted

    Hi sorry too hear you situation,sadly dordors don't  no much about  pancreas I'm the same as you I have chronic pain spells where have to be admitted and then my bloods and scans say pancreas is ok which isn't the case,it makes you feel like either not believing you or want to get rid of you soon as. Good luck to you anyhow it's a fuker the pain I'm well aware as it controls my everyday life now so  have to power on and try,
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    • Posted

      Ivor ; please read my post to Jared; try the bicarb soda test - just once ;if you have ascites or distended abdomen and it doesn't work; take the antiinflammatories and change to a veg diet (juicing) for a week. take some digestive enzymes if you have diffuclty with digesting fats / or malabsorption.
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  • Posted

    Hi lipase and amalyse? are the markers for pancreatitis. Which means that inflammation is what is cuasing the issues; (it is the trypsin in the pancreas you need to be mindful of). Lotsof things can cause pancreatitis; so it depends as to teh CAUSE as to what needs to be addressed. But the inflammation is the pain starter; that and rogue cells. Unless it is inflamed at the time, the docs can't tell; but if the pain is there and it's not inflamed; you may want to try looking at the INITIAL symptom you may have had prior to the pancreatitis diagnosis. For example excess bile acid can affect the gallbladder which in turn affects the pancreas (the list goes on).  If you want to know for sure; try taking some butterbeans and soy (just the once) these do have a range of trypsin inhibitors - which are not necessarily good for the pancreas but DO stop the pain(they also increase the cell size of trypsin and there is 'feedback' as they turn off the trypsin enzymes; that MORE trypsin is needed).. but if you take the soy and the butterbeans this quells trypsin pain - which is one of the enzymes in teh pancreas. Secondly ; you may want to consider testing with bicarb of soda for 'acid' issues (stomach and bile) - do not take this with milk -lay off the milk with it; and do it only once or twice - as longer term this affects the kidneys (apparently). If this works then go to the Doctor and get some PPIs (proetin inhibitors).  Re the gallbladder - this is affected by the LIVER - where bile is used made from cholesterol (was your cholesterol level high?). The bile is reutilised through the bowel - but sodium bicarb should ease this pending PPIs. the Solution to high cholesterol to improveyour bile (which hardly gets excreted) is to take a herb rpoduct which removes the Bile (also would mess with absorption of vitamins for the time so best to take before bed) - and MAINLY eat and take anti-inflammatories (food and supplments) like garlic (or more superior anti-inflammatories like boswellia serratta ?) Althoguh clincial testing is not widely availabe.

    I woudl appreciate some feedback so to know how you got on; and whether this information was helpful; it would also help others who are experiencing the same symtpoms

    * Reduce inflammation, Eat food that repairs cells, eat anti-oxidants and take supplments to address the organs that you think are causing the pain.

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    • Posted

      Hi Jared; sorry i have made two posts; one for the pancreas and one for the liver/ bile  - slightly confusing ;as  i seme to have read two different things; apologies. but you can try both and perhaps  you will have a bit more of an idea.. sorry i wasn't reading properly smile
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  • Posted

    Today my blood work came back and my lipase was elevated to 145, which isnt bad the doctor said. But defiinitly pancreantitis. They will keep the pain meds and iv going for a another day or two and then have me try to drink and eat stuff without the meds. The Dont plan on doing anymore tests as they k nnow what it is, But should they do an recg or something to maybe try and find why this is happening.???
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