Does AP always precede a CP diagnosis?

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How is one diagnosed with CP?  Is it necessary for there to be an acute attack of pancreatitis first before the disease eventually develops into chronic pancreatitis?  Does chronic pancreatitis spontaneously develop without there being any intitial attack?  I'm just trying to understand how you can get a CP diagnosis in the absence of an initual or acute attack?? How does it end up becoming chronic if you can't identify where it started, not including all the vague digestive symtoms.   Does my question make sense...??  neutral

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  • Posted

    I know it's a possibility though from what I've heard much less likely to go straight to CP without ever having an attack of AP.  I'm currently worried about that myself, spent the year so far with increasing upper-left back pain and frequent loose, light colored stools.  I was a heavy drinker in the past and to my understanding you can cause damage to the pancreas to the point of causing a disruption in function slowly over time without pushing it directly to the level of an acute attack.  I'm only 25 so I'm praying this isn't the case.

    I'm trying not to stress as I know it could be two unrelated issues but it's definitly hard when your symptoms seem to line up.  What I'm doing and what I'd suggest you do if you're in the same boat as me is push for testing (CT scan with contrast is a good first step, an EUS being the most accurate diagnostic tool which I am currently pushing my gastro Dr. for) and eat a low fat diet / refrain from alcohol and cigarette smoke / try to exercise daily.  If you truly have early stage CP these are things you would want to do regardless that will slow down or halt to progression of the disease (and are good for you in the long run anyway).

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    • Posted

      It's so hard not to stress and worry when you don't know what's causing your symptoms, you know what mean? And the thought of having CP, something that is manageable yes but lifelong and progressive is scary!

      So, from the sound of it you never had an acute attack either per say...I hope you can get some answers. The info I've read says if you do change your diet and take enezymes, it can help, so it's good you are doing that. Are you taking any meds or supplements? I've read that turmeric capsules can help with inflammation. Do you have any pain in your abdomen?

      My symptoms are a burning and squeezing pain from my belly button to my breast bone. It hurts all the time, regardless of what I eat. I have drastically changed my diet over the past month. No red meat, nothing spicy or fatty...nothing to acidic...no caffeine or alcohol...and I'm still sick! My poop is green during flare-ups and it burns...it is solid too...I have nausea but no vomitting...gas and belching...

      Have you had any blood work done? If so what were your results?

      I had a slightly elevated lipase level which has been dropping closer to normal over this past month...hence the CP diagnosis.

      Normal abdominal ultrasound, normal endoscopy and hidascan (gallbladder normal.)

      I will ask for those tests you suggested and I scheduled an appt. with a GI specialist next month.

      When do you go to the doctor? Hope you get some answers soon...

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    • Posted

      I can completely understand your stress!  This all started with very mild nausea, left upper back pain and loose stool in January.  It continued through the summer and then in August everything went away and I thought I was cured and was so happy!  In early September however the back pain and loose stools came back stronger than ever along with nausea which drove me to absolute depression because at that point I was convinced it was CP due to my drinking history. I kept reading horror stories on the internet and was afraid I'd ruined my life due to my drinking and convinced myself this is what I had.

      Over the course of this I've had bloodwork multiple times (always normal for pancreas and liver function), X-Ray, ultrasound, CT with contrast (all normal).  I've been taking tumeric as well as grape seed extract as I heard they are both beneficial for CP (and your health in general).  My pain is a bit abnormal for pancreatitis and I was hoping it was muscular but nothing seems to improve it.  I'm still planning to push for an EUS because I've been told that's the gold standard for picking up CP early - however I had a gallbladder (HIDA) scan today and the results are that my gallbladder is only functioning at 5% (35% is normal) so that gives me hope that that is the cause of my digestive issues.

      My only advice is keep pushing for tests and don't freak yourself out on the internet!  Stress won't help in any way!  I pray we both get a negative diagnosis for CP - keep me updated if you do continue to get tested and I'll do the same.

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  • Posted

    So, did your symptoms ever go away during the summer when it all started, or were they a daily occurence?  

    I think I've read all the same horror stories as you!  I feel so scared about CP...I know what you mean....but my personality is such that I will go to the worst case scenrio first and then back track and deduce....

    I've blamed myself too and have questioned my habits and lifestyle, for different reasons though thinking I must have done something in order to get this but I'm not a drinker really...I eat well, exercise...I'm in good shape so I am so confused and baffled with a diagnosis of CP...not only confused but terrified...I'm trying to tell myself that I was diagnosed by a general doctor based on blood tests and not a specialist...I have to console myself somehow...

    Do you think the tumeric and grapeseed are helping?

    At least with the HIDA scan results, you have some sort of explanation to your sytmptoms...knowing goes a long way....

    Let me know if you get the EUS test done and what the results are...and hang in there!  Ill keep you posted too!

     

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  • Posted

    Jkristine,

    ​yes it does make sence. CP most of the time comes from alcohol. It can also be caused by blocked ducts, heredity, auto imune disorders and some times the cause is unknown.... In short most cases are usually yes started by AP. I do not know if science has actually come to the true conclussion of why we get CP. But I sure hope they find a cure soon!! Hope I at least kind of answered your questions.

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    • Posted

      Thanks Manda,

      I agree...so much of CP is a mystery to the medical world...they don't have a lot of answers let alone treatment options and that can make someone who is suffering feel so alone and hopeless at times...it does seem like there usually is an initial AP attack for most people so it's confusing to understand how CP is diagnosed in the absence of AP...!

      Thanks for replying and helping me understand...I hope you're having a good day!!! smile

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    • Posted

      Jkristine,

      Hi , yep if you got it with out an initial attack maybe hereditary or auto immune disorder could be to blame. They really need more research for us CP suffers. I also hope you are having a wonderful day! Wishing you all the best!! ☺

      x Manda

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    • Posted

      Love your red hair btw! I can never get my hair to stay red for very long! It fades straightaway...

      How were you diagnosed? What are your symptoms? How long have you had CP?

      I'm almost 40 years old...I noticed horrible bouts of heartburn in August after eating Mexican food or sweets...I was able to manage it but then the heart burn kept getting worse and then my stomach started to burn, like an ulcer pain. Went to the doctor and I thought for sure I had gastritis or an ulcer as it was this intense burning right below my breast bone...he ran blood work and my lipase levels were elevated normal is 60 and mine were 101....as of last week, they are 69 and I'm not feeling much better...I had a period of 3 weeks with hardly any trouble and Ive stayed on my strict diet and still things are flaring up again...horrible heartburn, burning/squeezing abdominal pain and green formed poop! I don't know if this is a pancreas attack or what...I go in for a EUS next month. Have you had that done? I just don't know what mild pancreatitis is supposed to feel like...

      Endoscopy clear and abdominal US clear, HIDA scan normal.

      I have 3 kids and the despair I've been in thinking about my future has been heart wrenching...on my good days, I'm full of hope and positivity but on my bad days, like today, I am scared. Can CP vary from day to day?

      Sorry for all the questions...😔 it's no fun worrying...is it?!?!

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    • Posted

      JKristine,

      ​My heart goes out to you!! I am also a mom. they diagnosed me after 6 years of constant testing. yes I vary from day to day month to month. I was at the ER for the who knows how many times when a DR did an MRI... They found I had sever scare damage and stone calcification. I have had it 15 years and I turned 40 in August.... My pain in a burning sensation clear to what I am going through now throwing up extreme pain in my middle stomach, left side clear into my back feels like I am been run through with a hot poker. That being said everyone is diffrent. Yes I hve had many tests done. the EUS should be able to diagnose you. it is however hard to diagnose many times. That is why it took so long with me. all I can say as a mom myself is just do the best you can. Kids are amazingly understanding. I feel for you and I totoally sympathize. Any questions you have I will be glad to answer.

      Hugs and smiles sent your way!

      Manda

      ​PS, My hir is naturally light blonde so red takes really easy. TY! I think you look great! you could pass for 25 no joke!! smile

       

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    • Posted

      I had to stay off of here for a while as I was becoming obsessed with Internet and these boards desperate to self diagnose...sorry it took so long to get back....it's nice talking about something else other than feeling crappy, like haircolor!! wink lucky you! Blond hair does absorb hair color really well! I've tried red and it ends up looking too burgandy in my dark hair! And that's so nice of you to say I look 25! Somedays I feel so young and other days I feel like I'm 80! You look young too!

      So you get burning pain too? Do you think it's from the pancreas or do you think another condition causes it? It's hard to tell which organ is causing problems when it comes to your digestive system, isn't it?!?!

      I'm scheduled for an EUS on Friday...I'm nervous but I'd like an answer too...lets see how things go...

      How have you been feeling lately?

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  • Posted

    I am also in world on unknown these days.....It all started a year ago when had heartburn ...slightly elevated lipase 69 ( not sure we shd call it elevated)....have gone thu ...2 CT scans, 1 colonoscpy , 1 endoscopy , Blood works, 1 EUS .. all have been totally clear... But i have this strange scale-1/2 pain in V of rib cage ..going to back and shoulder...used to have yellow stools too ..NO Diagnosis as yet....not sure what to do now...any suggestions .....
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    • Posted

      Sorry to hear that....it sucks not knowing what is causing your symptoms....do you notice any difference in your pain from anything that you do, such as eating certain foods or stress?

      As far as I know and have heard if any test is going to see pancreatitis it's the EUS...I haven't had one done just yet...mine is on Friday...I have bad heartburn too and have you tried gaviscon advance...it's only available from the UK...I order mine from amazon and it has helped a lot! I take it after every meal and before bedtime...I'm meeting with a pancreas specialist doctor as we speak...ill let you know his suggestions for further testing...

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