How to proove CP?

Posted , 4 users are following.

Hi,

I am 32. 5 yeras ago I had AP caused by alcohol. After few days I was OK. Didnt know it was serious issue.

2 yeras ago I started to have digestion problems. Almost after each meal I have pain in epigastric area and/or under left rib.

My doc did - several USG, Blood Tests, MRCP, colonoscopy, 2x gastroscopy.

According her pancreas is OK.Official diagnose is functional digestive disorder.

I believe its true but still not sure.

My issues are - pain as above starts 30min after lunch/dinner and takes 2-4 hours, bulky stool, I lost 5 kgs and if I am under stress I use to loose another 2-4kg...at the moment 186cm / 73kg(big stress from my father ilness)..... I had evening/morning a lot of gas....

Is there any 100% test to be sure I dont have pancreatitis?

Thank you and wish all of you to be better.

ML

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8 Replies

  • Posted

    Hi ML83,

    I have almost identical symptoms as you. Well they are identical but I have right sides pain aswell. I also have completley normal tests for everything pancreas related. However I have been informed by the surgeon and my dr that just the pain alone is enough for them to be able to diagnose chronic pancreatitis. I still have not had the official diagnosis yet as my appointment with gastro isn't until end of April.

    The tests normally carried to diagnose CP are:

    CT scan, MRI scan with or without contrast, ultrasound, MRCP, ERCP, EUS, X-Ray, endoscopy and colonoscopy

    Bloods - FBC, Lipase, Amylase and tripsin, liver and kidney function tests, thyroid test, glucose/ diabetes tests and vitamin A, D, E, K and B12 tests.

    Stool samples for faecal Elstase and a faecal fat test.

    Not all of these tests are used because of the pancreas is damaged it usually shows up.

    If like me your pancreas is normal then it's usually inflamed and doesn't show on scans.

    They like to eliminate all other possibilities before concluding on CP that's why a lot of testing is for other things.

    I hope yours is just a functional digestive disorder. I too am able to drop a load of weight from stress. I am unable to put on weight. I have had loose stools for 6 months now.

    Please keep this thread updated with any updates. I'll be interested to know what happens.

    Gem

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    • Posted

      Hi Gem1384,

      thank you for your comment...

      I have my apointment on thursday so I will see if there are any changes.

      My doctor said that close to the are of my pain there is a colon and can cause this pain.something I feel under the left rib like bobbling of the gas in water.... thats probably colon, but I am not sure in the stomac area in the miidle(epigastric area)....

      So as I wrote.I have no issues in the morning...I drink 0.5 Liter of fresh homemade juice.That after 1.5 hour I have 2 pieces of fruit. I have lunch at 12.00 and after lunch ussually my problems start. They are not strong so I work without problems just I feel discomfort and I am nervous of that... I finish at work around 4pm and the pain is gone... I have dinner at 5-6 pm...and pain is coming back... in the evening before I go sleep its gone again.Very rarely I go to bed with a little of pain... In the morning the same day no issue from the morning it starts after lunch.....doctor says dispeptic disorder and functional colon disorder so at the end digestive functional disorder...I also cant tahe a weight on... I have days when I feel free of pian and I have proper stool.... but just few in the month....the rest are as described above.... whats your daily issues? are your pain strong?

      Will keep posted....

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    • Posted

      My morning starts with my morning Rush to the loo, which is solid to start and very loose to finish (doesn't float and no oil) but is very large in quantity. Sometimes at this point I might already have a little discomfort on my left side and possibly some on the right. Then I have breakfast which is usually a bowl of cereal and a cup of green tea. 30-40 mins after I almost always get pain on my right side. Sometimes it will be my left but mostly my right and I don't get the pains together. Lunch causes pain too and so does dinner. It usually settles about 8.30-9. I go to bed in no pain and sleep well. However if I have had a fatty meal then more often then not I am woken up in severe pain at about 1-3am. Mostly my pain is a 3-4 but when it flares up it's 8-10 and cannot be controlled by paracetamol, ibrofen or naproxen.

      I generally have bloated stomach, intigestion, abdominal cramps, pain around my belly button on the left side (I know this could mean my descending colon). Unrelated I have bone pain and muscle pain.

      I would love it if I didn't have CP!

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    • Posted

      HI Gem,

      I have visited docotro yesterday. She did usuall blood test and USG. Talked about my problems.

      Again she confirmed my diagnose is functional digestive disorder.

      I told her also about my accute attack 5 years ago.Anyway refused to confirm chronic panreatitis.

      Until there is no prove in some scan and another blood tests.stool test its not chronic pancretitis...

      She explained there could be some functional discprepancy plus stres issues which say to my brain that digestive is pan for my body and thats it... she tested me with all possible methods and cant diagnose me with CP.

      I am happy even pain is still presented.... what about you? anything new?

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    • Posted

      Hi smile

      Thank you for giving me an update.

      You must be happy that she still thinks her diagnosis is correct?

      I think I'm gonna mention everything you've said to my gastro next month.

      I have NO tests showing I have CP so I don't know how they can just diagnose me based on pain alone sad

      I saw the pain management consultant on Wednesday. He has officially diagnosed me with Chronic widespread pain syndrome (fibromilga). He can't treat my pains as I am still breastfeeding so unable to take any antidepressants or heavy duty pain killers.

      I've also today had my pelvic MRI results. They were normal. But I have endo, ahesions and fibroids so I would like to know what's happened to them! Lol! I've got a Drs app next week to talk to him about it.

      How have u left it with your Dr? Are you just leaving it for 6 months? How are u treating ur pains etc?

      Gem

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    • Posted

      Hi Gem smile,

      yes i will leave it for 6 months if nothing will get worse...

      I have some pain killers called NO-SPA...dont know the base of this drug.Anyway I am not using it. My pain is not so strong. I can manage it just it is veeery discomforted.

      Sorry maybe I missed something but is there any more information how your Doc can diagnose you based on pain only? If you want can write me on private email - and we can talk more in detail.... Thanks.

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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  • Posted

    Well the moderators deleted my message to you I think because I mentioned some products that have really helped me! I wish I knew how to communicated that w/o breaking any rules. I dont sell anything, just buy!

    Regardless I wiil tell you everything else I said. (below)

    Thats the million dollar question! How to diagnose CP! Whatever it is, be very thankful 

    that your pancreas is not showing signs of calcification or cysts. That 

    is a really good thing. Its very hard to eat the way we are supposed 

    to, but sometimes those with theses symptoms, and no calcification, can 

    get to a pain free place by changing your diet. Very little fats, no 

    fried foods or red meat, etc. Keep a diet diary.

    Get a great amino acid supplement so you know youre getting enough protien.

    And I take a rice bran powder that is FULL of good nutrients that is especially healing to the gut. This would be perfect for you if it is only a colon issue (which is likely a probable cause of my issues, because I have a very unusual mishaped duoedenum causing probable back up in the pancreas according to docs at Cedars. But , of course, they don't know for sure).

    Sounds like you're juicing and thats great cause no one will do it for you, and you will probably not get better unless you let it heal and change your diet.

    It sucks, believe me I know. But you are YOUNG and have so much 

    ahead, so stay on it!! And you WILL feel better.

      

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  • Posted

    hiya

    the best thing i've found to help with digesting food is Creon. I have both 10,000 and25,000 capsules. Rough guide to taking them is one 10,000 capsule per 5grammes of fat. having the larger ones reduces the number i take when i indulge in a high fat meal (fish and chips). Creon also helps with bulky stools because you digest more of a meal than without. A low fat diet is best but we all need to break the rules now and again. I too have lost over 3 and a half stone and can't regain much of it. Too many this sounds ideal but it's awful being like a skeleton. I am 175cm tall and weigh less than 50kg!!!! I too live on pain killers..... morphine, coedine,pregablin,paracetamol and oramorph. I currently take 23 pills daily and have developed insulin dependant diabetes recently. But life is for living and I am determined to do that. I was diagnosed with cp in July 2012 as a result of auto immune septacaemia. Hope this helps. Keep in touch and enjoy the good days and on bad days stay strong and remember tomorrow can hopefully be better

    Carole xx😘

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