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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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  • greg22471
    greg22471 Gem1384

    Posted

    ERCPs  are dangerous and are no longer performed for diagnostic purposes, only for therapeutic procedures, ie; stents, duct dilation, etc. The most sensistive test for diagnosing CP is an EUS (Endoscopic Ultrasound) using the Rosemont Criteria looking for duct, and gland abnormalities. ePFT (Endoscopic Pancreatic Function Test) is also used together with EUS to diagnose. ALL, other tests ONLY show moderate to advanced CP. They usually are normal in the early stages. CP is not a death sentence. There is medication, therapy and surgery to treat it but there's no cure. It's a progressive disease.   
    • Gem1384
      Gem1384 greg22471

      Posted

      Thank you Greg, I've found that all most helpful!
  • greg22471
    greg22471 Gem1384

    Posted

    Where are you located and what kind of care do you have access to? General Internist, even Gastroenterologists DO NOT specialize in CP. You have to go to a pancreas specialist.
    • Gem1384
      Gem1384 greg22471

      Posted

      I'm in the UK, near Coventry. So I'm under Coventry university hospital. I'm just under a gastro, I can't seem to find any pancreas specialists. Do they do them on the NHS or am I gonna have to go privately? The only pancreas speciality I could find was for cancer.

      Do you know if removal of the pancreas and islet transplant would solve my issues? If it does turn out to be CP?

  • greg22471
    greg22471 Gem1384

    Posted

    You need to request an EUS IF your doctor suspects CP. TPIAT is only reserved for cases in advanced disease and when ALL other attempts to treat have failed.
  • william65322
    william65322 Gem1384

    Posted

    Gem,

    I can understand your frustration with doctors, we have all been there.  You can have a long, productive and quality of life with CP, but to do you must do what you can.  First, restrict your diet and avoid fatty foods as much as possible along with others foods that may aggravate your pancreas.  Enzyme supplements may be needed to help with food digestion, which is very common.  Keep a log of what you eat and how your pancreas responds.  Second, find those activities in your life that lower your stress.  Thinking about the CP all the time will do no good, which I know is difficult to do.  Third, when you do have pain do what you can to alleviate it.  Some discomfort may be reality, but when it does get bad try different pain meds.  Try and stay away from the opiates as much as you can and only use them in dire times.  My prayers are with you as I have my 3 year anniversary with CP.   

    • Gem1384
      Gem1384 william65322

      Posted

      Hi William,

      Thank you for taking the time to reply. Sorry you are having to suffer with CP. I will take your advise on board. I am currently on a low fat diet. I will be making a note from now on about what foods aggravate my pains. And I will look into SCS in more details. Thank you for your helpful words!

      Gem

    • shaiza74846
      shaiza74846 william65322

      Posted

      William... can u tell me please that in chronic pancreatitis for how long we should be on fat free diet?? And should we ignore carbohydrates too?? As amylase is a carbohydrates digesting enzyme. 2 mnths ago i was diagnosed with pancreatitis with 291U/L serum amylase... and gradually it reduced with time nd now it is 23 but my pain is still.here... whether it is better than before but still making me uncomfortable and i cannot eat anything freely. Ultrasounds wre clear. What do u think i have CP?? Because AP cures within 2 weeks but my pai n is still.here whereas amylase is normal.now.
  • william65322
    william65322 Gem1384

    Posted

    Gem,

    One thing for pain you may want to look at is a Spinal Cord Stimulator (SCS).  It implanted in the body and tells you brain to feel a tingling sensation as opposed to pain.  Boston Scientific has a good website that explains the SCS in more detail.  I've had mine for about 1 1/2 years.

  • Woodywhite
    Woodywhite Gem1384

    Posted

    If your scans are clear, are you having correct scans .I was having Ultrasound Scans for ages, nothing showing then had MRI scan and scarring of pancreas was there to see.
    • jon54193
      jon54193 Woodywhite

      Posted

      If your scans are clear how is CP confirmed? Mine are also clear, but I'm much the same as you Gem, I beleive I have it but the docs say I haven't....
    • Gem1384
      Gem1384 Woodywhite

      Posted

      Hi woodywhite,

      Tank you for your reply.

      I've had ultrasounds, MRI and MRCP. Due to my age they are refusing a CT at the moment. I have read that CP can be very difficult to diagnose and you can have pains and other symptoms (which I have) but normal scans. Even the surgeon I saw told me structural changes would be microscopic and not visual on scans. The problem I'm having is that I'm in constant pain, I have loose stool, weight loss, dizzy spells, intigestion, rapid pulse, pain around my belly button, left kidney pain, pain under my left & right rib, pain the radiates into my left shoulder, pain in my right shoulder (less often), trembling all through my body, heart palpitations, severe pain after eating under my left ribs, fatigue, confusion, brain fog and bad epigastric pain.

      I've had this since April of last year, it got worse in October of last year and 2 months ago it took another downward slide and got worse again.

      I just don't seem to be able to get a grip on it sad

      Gem

    • Gem1384
      Gem1384 jon54193

      Posted

      Hi Jon,

      Some people are diagnosed on pain symptoms alone but other people are only diagnosed when scans show changes.

      I'm hoping from the suggestions from William and Greg above to get a EUS and see where I go from there. I've had lots of bloods and stool tests done. The only stool test I have had done is the fat test. I might ask for that too.

      Can I ask what ur symptoms are? What tests have you had?

      Gem

    • jon54193
      jon54193 Gem1384

      Posted

      Echo-Endoscopy, MRI

      I have massive brain fog, I cant wake up in the morning

      Headaches

      Neck pain

      Weak, pain in legs

      Sore joints

      Back pain

      Abdominal pain

      Groin pain

      Exhaustion

      Oily stool.

      This all started in June last year and I'm getting worse...

      Through endoscopy at the 1st hospital I was told my panc didn't look right, but no signs of any damage. I went for a 2nd opinion at a different hospital who said there is nothing wrong with my pancrease. I'm waiting for stool test restuls. I'm desperate and lost....

      Hang in there Gem.

       

    • Gem1384
      Gem1384 jon54193

      Posted

      Thanks Jon,

      I know how you feel! I'll let you know how I get on next week! Good luck for the stool results!

      Hang in there too smile

      Gem

    • greg22471
      greg22471 jon54193

      Posted

      Hi Jon,

       If you are still having epigastric region pain that radiates to the back either 15-30 minutes after meals or postprandial, 2,3,4 hours when food reaches the small intestines (this is the phase that the pancreas is most active) you need to request a EUS and an ePFT.

    • greg22471
      greg22471 jon54193

      Posted

      EUS (Endoscopic Ultrasound) and ePFT (Endoscopic Pancreatic Function Test). EUS is highly accurate in detecting early, minimal change Chronic Pancreatitis, and ePFT uses IV injected  secretin to stimulate the pancreas, they collect the pancreas juices to analyze the function of the gland.
    • jon54193
      jon54193 greg22471

      Posted

      I did have a EUS (Endoscopic Ultrasound) - they came back saying that the pancreas 'didn't look right' and that I had suspected early CP.
    • greg22471
      greg22471 jon54193

      Posted

      An EUS uses a traditional endoscopic scope to evaluate several organs using a ultrasound tip to bounce radio waves off the organ which sends highly sensitive images for the doctor to analyze. The analysis process for the pancreas refers to 9 criteria called Rosemont. > 4 criteria is suggestive of CP. < 4 criteria found is to be indeterminate. 0-3 rules it out. your doctor should have discussed these results with you rather than saying it "didn't look right". if, you have early cp, i would pursue the next most sensitive test and that being an epft.   4="" criteria="" found="" is="" to="" be="" indeterminate.="" 0-3="" rules="" it="" out.="" your="" doctor="" should="" have="" discussed="" these="" results="" with="" you="" rather="" than="" saying="" it="" "didn't="" look="" right".="" if,="" you="" have="" early="" cp,="" i="" would="" pursue="" the="" next="" most="" sensitive="" test="" and="" that="" being="" an="" epft.="">
    • greg22471
      greg22471 jon54193

      Posted

      You mentioned in a previous thread that you only had an Endoscopy not an EUS which is entirely different. An standard Endoscopy cannot visualize the pancreas. 
    • greg22471
      greg22471 jon54193

      Posted

      Hi Jon, my apologies, you did mention echo endoscopy.  I have never heard of it referred to as that only EUS. 
    • Woodywhite
      Woodywhite Gem1384

      Posted

      Gem I had none of your symptoms, mine started as a constant stitch like pain in right flank, getting gradually worse had at least 5 ultrasound scans and nothing to show. I then started getting chest pains and was sent for MRI with contrast . Heart was fine then had a call to go see Mr Smith pancreatic specialist in Leeds who confirmed with me I had CP and could see scarring on scans. About 6 weeks later I collapsed watching the mighty Leeds United with excruciating pain and woke up at St James hospital in Leeds where I spent the next 7 days recovering.Never want that pain and sickness again. I'm struggling again with pain and sickness and have a further MRI scan on 25th and see Mr Smith in 14 days after hopefully with some news what he proposes next
    • Gem1384
      Gem1384 Woodywhite

      Posted

      Sorry your suffering again. It is horrible sad I hope your scan on 25ty goes ok. And I hope you get some answers and a way forward from your specialist. Is he on the NHS or privately? I hope you don't mind me asking!

      Take care!

      Gem

    • greg22471
      greg22471 jon54193

      Posted

      CP is confirmed with 3, highly specific tests. EUS, ePFT, and histology (tissue biopsy during EUS)
    • Woodywhite
      Woodywhite Gem1384

      Posted

      Gem he's on NHS but I see on UK pancreatic site somebody paid private to see him, she was very impressed with him

      Dr Smith Bexley wing St James Hospital Leeds

    • cathy_94688
      cathy_94688 greg22471

      Posted

      Hi greg

      Would you please tell me what are ePFT and histology tests and how they are preformed? None of the GI doctors that I went to mentioned thes test.

      Thank you

    • jon54193
      jon54193

      Posted

      still nothing confirmed as CP, stool test negative too, had a PET CT scan and that came back clean. The professors suggested I have IBS and Fybromalgia - I'm convinced I have CP with laft flank pain, stabiing etc. Now they tell me the testing will stop and I need to address my IBS. Could they be correct? What should I do next? Thanks peepz. Peace always. 
    • jon54193
      jon54193

      Posted

      I aslo stopped drinking 11 months ago - after all thes scans came back neg. I decided to have a few beers to test the pain - it didn't make it any worse, and I felt ok the next day....is that typical??
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