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Chronic Pancreatitis symptoms but tests all normal!

Posted , 7 users are following.

Gem1384
Gem1384

Hi All,

I have started this thread as a means of help and for us to chat on when we need some help etc.

There are a lot of us in the same boat with symptoms that point to chronic pancreatitis but the tests keep coming back notmal.

I suffer with pain daily, aggravated by eating anything! My pain is on my left side, under my ribs at the front and back that radiates into my upper back. I have epigastric pain, sometimes more to the left, sometimes more to the right. I have right sided pain under my ribs at the front and back that radiates into my shoulder. I have loose stool of varying colour (yellow, burnt orange, light brown), weight loss then weight gain and now weightloss again. I have dizziness, lightheaded, fast heart rate, shakes, tinnitus, bone pains, achey shoulders, knees and wrists, pains in my ears and my throat. Bloating, passing wind, indigestion and heart burn. A feeling of pressure in my chest inbeteeen my boobs.

I am taking amitriptiline, grape seed extract, turmeric and alphodic acid capsules.

I've had the "usual blood tests" and stool tests.

I have a low gallbladder motility of 30% - consultant doesn't want to take it out. I want it out. I've been referred to surgeon.

I've had the follow: ultrasound x3 normal, 4th ultrasound showed debris in gallbladder, MRI (upper abdomen) and MRCP- normal, MRI Lower abdomen - showed free fluid in pelvis but normal, endoscopy and sigmoidoscopy with biopsies for inflammation, IBD, h.pylori and celiac - normal. Polyp removed in lower colon- non cancerous. Endoscopic Ultrasound - normal, HIDA scan - low motility.

So that's where I'm at now. Recently in the last few days my pains have changed to contant and are very stabby and deep in nature. They don't seem to be letting up at all. They have moved to my epigastric area which i find difficult to put to the back of my mind.

Please feel free to suggest anything, share your story or just generally comment smile

Thank you for reading!

0 likes, 17 replies

17 Replies

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  • Ruthie49
    Ruthie49 Gem1384

    Posted

    It's great you have started this thread Gem for all of us with these symptoms but clear scans and no diagnosis. My symptoms are virtually identical to yours Gem and I've had them daily for a year plus three more severe episodes of increased ULQ pain, weight loss, diarrhoea, fatigue, burning, tightness, shaking around pancreas and generally feeling awful (I'm having an episode like this at the moment). During this time I've had the following tests:

    Gastroscopy, colonoscopy, capsule endoscopy, abdominal ultrasound, abdominal CT, brain scan, MRPC and EUS. All these have been clear.

    My blood work has always been normal: Liver, kidneys, amylase, CRP, FBC.

    I've had 3 low faecal elastase tests and two normal.

    I've been a coeliac for 20 years but My gastro says this is stable and doesn't think it's related to this upper abdo pain. He suspects the pain is pancreatic but can't explain why. I think he assumed it wouldn't be PC because I'm not a heavy drinker (and teetotal since these symptoms started) and don't smoke. But from what I have read, this stereotype can be a misconception, especially in the UK where many CP sufferers develop the disease for other (often genetic or idiopathic) reasons.

    I have my first appointment with a pancreatic specialist on Nov 4.

    One thing I haven't had is a HIDA scan so I might ask for this.

    I am delighted to have had so many clear scans, as I'm sure everyone else in this situation is too. We don't want a CP diagnosis any more than anyone would, but we need some kind of diagnosis and clarity about what is making us so ill.

    Wishing everyone with or without a diagnosis a day with less pain and the strength to get through.

    • Gem1384
      Gem1384 Ruthie49

      Posted

      I really hope you get somewhere on the 4th. You'll have to keep us updated. Have to tried to shout? Does that hurt? I tried to shout at my daughter and it hurt to shout at her?! That's a new one for me. It hurt inbetween my ribs.

      It's typical for me. I make a fuss for all these tests have them done then my pain increases and my symptoms get a whole lot worse! Now no-one is going to want to check anything as they were all normal before.

      God knows what's going on at the moment. I really can't shift the pain though it's there all the time! I've just added some ibrofen to the mix to see if it helps sad

      What do you take for pain Ruthie? X

    • Ruthie49
      Ruthie49 Gem1384

      Posted

      Yes, it hurts me to talk a lot sometimes, it hurts with movement too: twisting, stretching. It's worse sitting or on my feet too long. I can't lift heavy things either. It's easier lying on my side than my back. The only position I can get some relief is leaning forward on my knees on a giant beanbag! But lately even that's not working too well. I take co-codamol but when it's bad it doesn't seem to touch that tight, strangulated feeling under my left rib. The whole pancreas feels like it's I. A spasm sometimes but also feels sore and fragile too. I've found valium seems to relax it a bit sometimes and this makes sense with the SOD theory as perhaps the SO us in spasm. I'm hoping the Buscopan might help this too but it hasn't so far. I also worry about taking co-codamol as those with CP say opiates should be avoided as they can make the SO spasm all the more, but paracetamol alone don't help me. I try to avoid ibuprofen as they burn my stomach.
    • Gem1384
      Gem1384 Ruthie49

      Posted

      Thank you for sharing smile

      Your symptoms sound very similar to me sad they've prescribed me co-codamol but with me breastfeeding I can't take it yet. I've also heard buscopan is good for gallbladder attacks so I have been taking mine again to see if it helps the pains. I can't believe the pain hasn't stopped at all today sad I've just managed a small a piece of fish but again the pains are bad again!

      I just wanna be normal again sad

    • Ruthie49
      Ruthie49 Gem1384

      Posted

      Me too Gem. Mine is worse sitting or standing and generally gets worse as day goes on. I have to keep lying down. Is yours like that? Maybe we should keep up the Buscapan regularly. I wonder if mine is gallbladder related. I had gallbladder pain during pregnancy and they never got to the bottom of it. And sometimes now the pain is on the right side too.
  • chica
    chica Gem1384

    Posted

    i havent been diagnosed with anything except chronic pelvic pain which is not very helpfull.

    i thought my nucleus was in my left ovary area, but i have all your symptoms.

    i use an anti spasmodic.

    also triptozol but that puts me to sleep.

    i've been liquidizing my food as i,m desperate.

    i dont eat any bread or flour products.

    i do take pancreatic enzymes but when i'm desperate with pain and everyone is going out to have fun, i get a whiskey and hot water down.

    big measures here in spain.

    nearly always does the trick.

    still dont have a clue whats wrong with me as all the ''experts'' havent a clue.

    you only have to look at these forums to see its the same old story.

    scary when you think ,when you're sick, you're supposed to get medical help.!

    • Gem1384
      Gem1384 chica

      Posted

      Hi Chica,

      I know you're in Spain, but can you tell me what enzymes you're taking. Here in the UK the prescribed enzymes from Doctors are call creon and I can't get any without a prescription from my doctor. But as I haven't been diagnosed with chronic pancreatitis they won't prescrib them. I've tried brands from Holland and Barrett (health food shop) and various other online shops but I can't get tablets in a high enough dose to make a difference. Hope you are ok!

      Gem

  • nataliefranc
    nataliefranc Gem1384

    Posted

    Ive spoken to most of you before that I've had upper left abdo problems for last 6 years, all tests also clear. Spoken to many people with cp that say my pain sounds exactly like it....others that don't agree. Well lately I feel like anything that goes wrong with my body is always left sided! I have bulging disks and an annular tear in lower back and tonight it's my left lower back and all down my leg that aches and I just can't get comfy! Plus my usual upper left abdo pains which go into my back I just can't tell where one starts and other finishes! Feel like from left boob down to my knee on left side is in so much pain that I just can't get comfortable! I've even had a few vodkas in the hope it might help but I still feel it! Anyone have fibromyalgia? Could I have this? Can that only effect one side? I'm sick of this it's a Friday night, a rare break from my children and I just want to stay up with my boyfriend and have a normal night yet once again I've come to bed way before him in a bad mood and searching the internet for my symptoms 😠
    • Gem1384
      Gem1384 nataliefranc

      Posted

      Sorry to hear you had a bad night Natalie sad

      I hope you're feeling better today? How's did the vodkas go down? How's the pains today? Xx

    • nataliefranc
      nataliefranc Gem1384

      Posted

      Pains were just same as normal today but tonight the back pain is coming back 😔
    • Gem1384
      Gem1384 nataliefranc

      Posted

      Oh no Hun sad I'm sorry! Maybe you should be referred to check for fibro? You can only ask. My bone pain is awful at the moment 😢 I've managed to eat a bit today though 😁 so I'm happy about that. Pains are still there but no where near as bad as they have been! I hope you manage to sleep ok! xx
  • nataliefranc
    nataliefranc Gem1384

    Posted

    Just wondered how you are getting on gem?

    Natalie x

    • Gem1384
      Gem1384 nataliefranc

      Posted

      Hi Natalie,

      How are you doing? How's things?

      I haven't been getting any email notifications from here sad so thought I'd log on and have a look why.

      I'm up and down thank you. Pains were mildly controlled by amitriptyline but I've just come off 20mg a day because it made me horrendously bloated. As a women you know what that can do to you sad I looked heavily pregnant. But my pains are back sine stopping it. All in my epigastric area. It's driving me crackers. Lol! I hope things are ok for you! x

    • nataliefranc
      nataliefranc Gem1384

      Posted

      Exactly the same story with me! I was feeling lots better on amitryptiline but I put on weight with it do decided to come off it and have now gone downhill again! So frustrating! X
    • Gem1384
      Gem1384 nataliefranc

      Posted

      I don't know what is worse sad sorry you suffered it too. I've also been diagnosed with vulvadynia so the amitriptyline really helped keep that under control. So coming off it has flared that up too sad

      How are you doing otherwise? x

    • nataliefranc
      nataliefranc Gem1384

      Posted

      Other than that I'm ok! Not so obsessed with it anymore. I do still Google but think I've read every thing on there anyway lol! I've cut out alcohol completely for a month and thought that was helping but treated myself to a few glasses of Diet Coke last night as I was getting sick of water and I'm in pain today! Burning in my upper left back mainly. Not sure what that's all about!
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