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Dr finally agreed that my symptoms sound like chronic pancreatitis!

Posted , 18 users are following.

Gem1384
Gem1384

So after over a year of suffering in pain, going back and forwards to my GP every week, scans, blood test after blood test, my Dr agrees that my symptoms sound like chronic pancreatitis. She said she doesn't know what to do as my scans are clear.

I've phoned my consultant and I'm in next week to see her again!

To say I'm scared is an understatement! To be repeatedly told it's not your pancreas and it's just IBS! I'm angry!

Recent changes include persistant intigestion (omperazole not working), rapid heart rate 110+ most days, dizziness, shaking, blurry vision, calcium deficiency and very low magnesium levels.

I had always thought it was CP but with no one else agreeing with me i had kind of just thought it was in my head etc. Now I'm a bit shocked!

I have read that small duct problems are more common in females and seem more difficult to diagnose? Does anyone know anymore about this?

And the dreaded question, what is life expectancy like with CP? I've obviously read everything but it differs so much!

Can someone also tell me why they don't just take out your pancreas to stop the suffering? And transplant the islet cells to the liver? Surely this is the way forward?

Thanks for reading and sorry for the rant! Just very down and scared!

Gem sad

3 likes, 120 replies

120 Replies

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  • Dreamy82
    Dreamy82 Gem1384

    Posted

    When I'm having thos optimist vs pessimist debates with myself (I'm going coo-coo :-)), I'm telling myself that Pan Can symptoms usually appear (from what I've read out of the blue) and at that point the tumor is usually quite large.

    My symptoms have appeared gradually for 3 years. I had first classical IBS with diarrhea and lower left abdomen pain. Then 2 years ago I had an episode with similar rib pain, but it all dissapeared since I went gluten and lactose free...up until not.

    So no, I'm trying to convince myself it's not PC! But of course, I'm terrified :-(

  • nataliefranc
    nataliefranc Gem1384

    Posted

    I have continued to drink since having negative tests. Sometimes I can be fine others like today after having 1 beer and about 4 bacardis I'm having bad stabbing pains all upper left abdo, side and back. Not in slightest hungover but these pains really put me off and make me realise alcohol 100% makes whatever is going on inside me worse 😔 so annoying as whilst drinking them I feel amazing, normal and positive for the first time in ages then the next day boom back to worrying! Hate this so much! Just want to know for sure so I can completely get my head around everything and try and get on with my life!
    • lucy91054
      lucy91054 nataliefranc

      Posted

      So the same, no pain when drinking at all, yet 24 - 48 hours I feel it. More a bruised tender intermittent feeling.
    • nataliefranc
      nataliefranc lucy91054

      Posted

      Yes mine is usually about lunch time the following day and lasts a couple of days. I get the bruised feeling inside and sometimes tender to touch done of my ribs. I also get short sharp stabs though on upper left tummy ribs, side and back
    • nataliefranc
      nataliefranc jon54193

      Posted

      I had ct and endoscope when this all started 6 years ago. Both clear. Since then had loads of blood tests too many to count! Stool tests, colonoscopy, ultrasound, MRI with contrast dye, had all of these last Xmas time 5 years after pains started and still nothing showed on any of them!
    • nataliefranc
      nataliefranc jon54193

      Posted

      Because google always comes up with that! I've been on a lot of pancreas forums spoken to other people with CP and some agree it sounds like it could be. I'm obviously hoping it's not but I can't get the worry out of my head! It can be hard to diagnose.
  • Dreamy82
    Dreamy82 Gem1384

    Posted

    Do you ever get a dullish or stinge like pain, or is it always strong? My pain is (usually) not super strong, but enough to bother. As I said, after some meals and some nights it gets stronger.
  • Dreamy82
    Dreamy82 Gem1384

    Posted

    I have inceasingly a feeling that the onset of these issues is somehow hormone + stress related...just hoping it didn't provoque anything unreversible :-/

    Just to explain what I mean. In my case these latest symptoms with pain under my rib and weight loss have started a month aftet two major stresses: lost work and found out I had fertility issues, and after a month on DHEA hormone to boost my fertility for an IVF.

    Coincidence or not...I think hardly.

    This as I said is the trigger, now I just have to figure the damage and how to fix it.

  • ChristineB12
    ChristineB12 Gem1384

    Posted

    Hi Gem-

    Not sure if I ended up messaging you on here or not... I have some major brain fog going on. 

    You asked if I had any new developments (about 2 months ago)... well since May I tried to avoid all of these forums because it was making me crazy. I literally went on living my life normally (drinking on Friday and Saturday evenings, going to dinner, celebrating life). I feel like my pain is the same and bowels are exactly the same... when I eat a lof of fat (fat has never worsened my symptoms), the next day I have floating light brown stools with undigested food often. I met with another doctor (pancreas specialist) and he said "its not your pancreas"... and while I'm thrilled to hear him say that... I am still terrified because my stools arent getting any better. To date I have tried: gluten free, dairy free, low fat, no alcohol diets and I am not on a "candida diet" that a natruopath recommended I try. However, it is really high in fat and protein (so my bowels look terrible) and very low in carbohydrates. I've already lost like 5 lbs. I may not stick with it because I dont want to lose any more weight!!! 

    Ive also tried Rifaximin (for small bowel bacteral overgrowth) with some improvement but not resolution. I'm just at my wits end. Its like should I continue to enjoy my life while I have it and have negetaive tests (ie: having an occasional drink and dining out) or should I demand a trial of pancreatic enzymes to see if that helps and if it does then we pretty much know its my pancreas? I dunno what to do... but I'm driving myself nuts. 

    I think you already knew but Ive had an EUS (negative), MRCP w/secretin stimulation (negative), RUQ ultrasound (negative), HIDA scan (negative). I wish I could have a direct pancreatic function test but I dont even know where I would have one done. I just want to know already. If I need to stop drinking and eat low fat then i would rather know now instead of torturing myself with the possiblity of it. UGH. I hope you are feeing better!! 

    • Gem1384
      Gem1384 ChristineB12

      Posted

      Hi Christine,

      Sorry, yes I did yet your message on your thread but I forgot to message you back. So thank you for posting on here to jog my memory!

      Sorry your still suffering sad I am at the moment quite badly. I'm in the middle of a gallbladder attack which has sparked off the pains on my left side. So they are as bad as ever at the moment. Really aching and stabbing especially in my back sad but there's nothing wrong with my pancreas!! Lol! Got my appointment on the 6th October, I'm prepared for another fight with the gastro! Lol! Why does it have to be like that?? Why can't they treat everyone with respect?? I wouldn't go in there crying like a baby if I wasn't suffering everyday! I am a women with 3 kids! I know what pain is! They said to me they would meet my demands but when everything came back normal then I was to forget about it and move on! Can't wait to rub my HIDA scan results in their faces!!! Lol! I've always said to them the pain on my right side sparks off the pain on my left side which then last for days/weeks!

      Sorry for moaning it just so annoying! sad I really want to trial enzymes but they refused, he said something about a placebo effect? I begged but he would budge on that. I've managed to put on weight!! Put on 11lbs but now I'm near 10stone again and have got a black tie ball to go to in November so need to try and shift a couple lbs again! Lol! I'm never happy! This fodmap diet has just made my stool hard and normal again. Still light and undigested food thou rolleyes sometimes they float, sometimes they don't! I remember soothing my biology teacher said to me at school. It was floaters good and sinkers bad. So why now has it changed to the other way round? I've searched the Internet and I would says it's half and half??

      I've finished ranting now, lol! Gotta sort the kids out!

      Keep me up to date with how you get on! I'm always here to chat if you need!

      Gem

  • jon54193
    jon54193 Gem1384

    Posted

    Dear all - I'm prepared to travel anywhere worldwide to get help/diagnosis - who is considered THE Pancreas master? Any names?
    • Dreamy82
      Dreamy82 jon54193

      Posted

      I would also like to know that! If we do have CP we need proper therapy or it get ugly :-/
    • jon54193
      jon54193 Dreamy82

      Posted

      I agree...Where in the world are you Dreamy82?
    • Dreamy82
      Dreamy82 jon54193

      Posted

      I live in Norway, but am currently under investigation in my home country: Serbia. The problem with Norwegian healthcare is that they think the cure to everything is fish oil and Ibuprophene :-) when my symptoms started, they just did a blood test and ultrasound, and since the results were normal, refused to do any further tests. However, my symptoms started getting from bad to worse and I started losing weight, so I decided to come here and do all the tests in order to get a diagnosis. No luck for now! However, I will get an EUS this week...scared they will see something nasty :-(
    • jon54193
      jon54193 Dreamy82

      Posted

      Oh hang in there and let us know how you get on. It will be ok!

      I

    • Dreamy82
      Dreamy82 jon54193

      Posted

      Well, here at least I got a presumptive diagnosis of milder pancreatic insuffiency and digestive enzymes...which seem to help a little. At least I stabilised my weight and it seems to hurt less after eating.
    • ML83
      ML83 Dreamy82

      Posted

      Hi Dreamy I am in the same siuation EUS next week
    • Dreamy82
      Dreamy82 ML83

      Posted

      Good luck! I will tell you what my results are. Keep your fingers crossed for me! ;-)
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