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is it CP?

Posted , 4 users are following.

ML83
ML83

Hi All,

I would be wondering if anybody can explain me when exactly can doctor confirm CP? I have had light AP 5 years ago.after few days i was ok. 3 years ago sterted my problems with digestion. At the moment I have all symptoms of CP. Weight loss, pain after meals lasting 2-4 hours, heavier and not so solid stool, gas....  I am using enzymes which help me to digest.... 32yeras, male.

My doctor did all tests related and not related to pancreas except EUS. She says its not CP because my pancreas doesnt have cyst, calcification or any other physical change to normal. i am officialy diagnosed as functional digestion disorder plus mild IBS. What are your experiences with diagnostic rules? There must be physical proof as cyst  or calcification, size or blood proofs OR symptoms like mines are enough to diagnose with CP?

Another question is regarding life expectations: I am working but how long if the illness will progress(pain, weight loss...)? Are there people who can live with that and work for 20-30 years after diagnostic? Thanks guys!

ML

0 likes, 9 replies

9 Replies

  • holly78179
    holly78179 ML83

    Posted

    Hi, I can't answer your question and my symptoms are not the same as yours but I agree that sounds like cp. since no one has responded here I just wanted to direct you that there are a couple of ongoing threads about diagnosis. CP is very difficult to diagnose until it's progressed to an irreversible stage. There's a Facebook group, pancreas pals that is supposed to be good and I would talk to username GEM on the other threads about all the diagnosis and tests he has had, hope that helps some. Good luck to you, my aunt has CP and the lifespan is much longer if u catch it and take care of yourself with dietary changes.
    • ML83
      ML83 holly78179

      Posted

      Hi Holly,

      thansk for you advice. i just wanted to start discusion from begining cause didnt received clear answer on FaceBook in pancreatitis pals. I change some emails with GEM...I think she doesnt have CP even has a lot of issues and fight with pain .... Anyway thanks smile

  • william65322
    william65322 ML83

    Posted

    I've had CP for over three years now and the best diagnostic tool was EUS, which did confirm the CP.  It is important to note that even if your enzyme levels are normal it can still be CP, which is why doctors will give you enzyme supplements.  My pancreas does not have any cysts, but they did see enough of the EUS to make the call as being CP.  Life expectations is a difficult question to answer, but there is good news.  If you have CP there is no reason you cannot have a decent and productive quality of life.  The best things to do are stay away from alcohol, have a low fat diet and exercise.  One of the more difficult things at times is pain management.  I was on the usual opiates for about 1 1/2 years and during that time my body built up a dependence and tolerance to them so I would have to increase the doses as time went on.  About 2 years ago I had a Spinal Cord Stimulator (SCS) implanted, which tells my brain to feel a tingling sensation and not pain.  The SCS does work well and it got me off the opiates.  I do have to take some pain meds such as Tramadol and Haldol for the breakthrough pain.  My prayers are with you.   

    There are many people who have had CP for 20 years. 

  • ML83
    ML83

    Posted

    Hi All,

    I have done my EUS today. result is that my pancreas is OK. Doctor refused chronic pancreatitis.

    In last 2 years I have had several sono checks, MRCP, EUS, Many blood tests, fecal test. All OK. After all this even I have symptoms is it possible to have chronic pancreatitis?

    Thank you.

    ML

    • Dreamy82
      Dreamy82 ML83

      Posted

      Hi ML83,

      I have the same problem as you, and all the results were clear...even EUS. My doctor couldn't diagnose CP, but he told me that often at early stages of CP, nothing would show up on imaging or blood results. I am currently on Creon, which helped me to reduce the pain after eating. I am struggling to put weight back on (I lost 12lbs) and I think I have some vitamin dediciency. The other thing is that I am very thirsty at night. My blood sugar is normal.

      All you can do is see what triggers the pain and stay away from it. I avoid fat of course. Did digestive enzymes help you at all?

      Did the doctors check the function of your gallbladder? They didn't in my case, but I will insist they do, because in my case the pain started on the right side first and then moved also under my left rib after meals. SOD is another possibilty.

    • ML83
      ML83 Dreamy82

      Posted

      Hi Dreamy,

      thanks for your comment. We are in very simmilar situation.

      I am also on enzymes. I tried Creon, and Pangrol. Currently I am on enzymes which you can by on internet.they have different ration of types of enzymes and they worked the best for me... Cren or Pangrol (dont know if available in your country I am from Slovakia).

      I feel I have deficiency of Magnesium.But I am taking it so its ok now...

      My blood sugar is ok...

      as I know gallbladder was checked... but I know it is very connected...my pain starts in upper abdomen or left rig cage...right side is OK...

      I have also lost cca 7kg..which was neraly 10% of my weight... with enzymes I put the weight almost back but its everyday fight.... I would like to put more on but not possible...

      regarding top comment, my feeling is that if all tests are clear , than even if there is some erly stage I think it should be reversible.... you know maybe pancreas is the reason of our issues but if the organ is OK than just need to give it some rest, good diet, take a lot of magnesium (to avoid calcification)...and hopefully there will be no organic progression....

      I am fighting also with my parents in law as they are doctors and said its not pancreas.... its just functional disorder...it can take few or several years or even whole life... until there is no damage, its not serious regards to physical health.... I will try to "forget" the dissease, relieve some stress and think positive and will see...of course diet is very important....

    • Dreamy82
      Dreamy82 ML83

      Posted

      Hi again ML83,

      What enzymes do you take right now exactely? Creon?

      How long did it take you to put weight back on? What are you eating? Low fat or everything? I am for 3 weeks on enzymes and still haven't put weight on...well, at least I'm not losing anymore.

      What I meant by checking the gallbladder function, is a HIDA scan that shows not the stones that you can see on ultrasound, but the emptying/function as well. It happens that the gallbladder looks normal and without stones, but is not functioning properly.

    • ML83
      ML83 Dreamy82

      Posted

      Hi,

      I take enzymes from internet :

      they looks more for amylase and protease not like creon which has more lipase....

      I dont eat fatty food so my thought is that this one is working better because it has more amylase which digest sugar (sacharids).... like when you eat bread you need more amylase as lipase.... but its just my experience , you can try... I started to take it in spring... had 74 kgs, after summer holiday so in 3-4 months I have ended up with 80kgs... It worked quite well...

      Every day I start with fresh homemade juice (carrot, lemon, beetroot)...0.5l... after 1-1.5hour i eat 2 pcs of fruit... banana/apple/season fruit....

      than I have lunch... usually soup and some salad....usually salad is with meat...so lets say meat + raw vegetable - no dressing.... in the afternoon another 1-2 pcs of fruit... dinner depends... very good is porridge with boiled vegetable  - this is perfect no pain... sometimes I have cooked, sometimes just bread .... also some sweet like dark chocolate or pie... I force myself to drink in total more than 2L of water... stopped smoking, driniking cofeee, drinking alcohol... sometimes I drink 1 can of nonalcoholic beer in the evening ...

      Thanks for info... I will ask my doctor about HIDA...

      what are your habbits? what is the best or what can you recomend from your diet? something good for eat and not doing troubles to stomach?

       

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    • ML83
      ML83 Dreamy82

      Posted

      Hi Dreamy,

      I have alreadu replied to your last message, but systems shows it needs to be moderated.... probably because I put link with enzymes which you can buy... lets wait if the message will be released if not I will reply tomorrow...

       

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