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Need help/advice

Posted , 8 users are following.

lawrence1969
lawrence1969

Good Morning I would be very grateful if anyone can offer some form of advice. I was recently diagnosed with chronic pancreatitis. The specialist increased my Creon from 10000 to 40 000. I take 2 capsules after each meal but it does not seem to be working. My stools are still very soft and after each meal 15 minutes later I’m rushing straight to the toilet.  What is even worse is since I’ve stopped completely drinking as advised by my GP/Specialist my stools have got worst. I don’t know if it’s because of all the info I have read on the internet relating to this illness or this is what normally happens to every patient diagnosed with this illness.  I recently read on the internet about other medication that helps i.e. Aloe Vera, Betain, primrose oil and Vitamin B12. I don’t know if any of you can offer any advice on these medications/supplements. Also I recently went to see my doctor for my blood test results he said my sugar levels have increased and my liver. I am awaiting another stool sample test back. Every morning my stomach make extremely loud gastric noises as soon as i finish eating my stomach goes into overdrive, sounding like a washing machine the only time it stops is when I go to the toilet. My pains in my stomach are very mild from 1-10 I will say 2 nothing like what I’ve read here on the forum.  It has affected my whole outlook to life and lastly I still smoke two cigarettes a day. I have also read that I need to stop that completely, I am considering going on the Vapour friends have told me it’s better. I would appreciate any form of advice because I am extremely distressed with everything, Thanks.

1 like, 27 replies

27 Replies

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  • Reefsider
    Reefsider lawrence1969

    Posted

    Lawrence I too am newly diagnosed with chronic (autoimmune) pancreatitis.  The several different names relate to cause but the disease is the same and follows the same steps in a general sense.

    My specialist focuses on the pancreas and has just returned after several years pancreatic research in Europe.  He told me I had to take the creon immediately I was about to eat.  He also told me that the enzymes (I take Creon) only last for 30 minutes so if out with friends for a meal, something I haven't been able to do for years btw, and the meal takes longer I must take more creon.  He also said that even if I go out for coffee and cakeor have a piece of fruit at home I must take the enzymes before starting on the cake or whatever snack I decide on.  He told me that taking the creon when I wasn't about to eat was useless. 

    My diagnosis took years longer than usual to find because I have another disease as a result of a metabolic dysfunction and symptoms were lumped into that basket, grrrrr.  One of the confusing things about me is that I put on weight, 30 kilos (quickly and without obvious reason) and whilst I complained and wrung my hands about it no-one seemed to care or put the gain down as a possible symptom of something.  Now my specialist says my mal-absorption issue was such that I absorbed the calories but not the nutrients so my vitamin levels (and other stuff) are very low.  I had malnutrition I guess. 

    My stomach makes noises too, and gurgles and even though I take creon I'm still belting off to the loo within a short time of eating.  To be fair I've just begun my medical journey so if I discover any other nuggets I'll pass them on.

    One thing I've learned having been born sick is that you can fight something and be angry or you can learn about what's going on and work on how to best deal with it.  I guess it's like that old business adage "work smarter not harder". Pancreatitis isn't like the common cold, it will still be with us in a week, or month or forever but we can ensure the quality of our lives is the best it can be. Support helps with that, family, friends or forums like this.  I wish us all luck actually but just see how many people care about your situation already Lawrence. Take care.

  • Reefsider
    Reefsider lawrence1969

    Posted

    Lawrence I forgot to tell you what my specialist told me about dosage of the enzymes.  It seems we can increase the dosage ourselves.  My GP initially prescribed 2x10,000 capsules but that didn't seem to work.  The specialist told me I need to be taking much more and whilst I've not got that prescription yet I've increased my 2x 10,000 to 4.   The thing is that yesterday whilst eating dinner I had to take another 4 during the meal. 

    It seems from what you say and your symptoms that you need to increase your dose.  The enzymes aren't like other medications, you can't overdose, you need what you need.  So try increasing your dose and see how your bowels respond.

    I'm finding that each increase works for a couple of days and then my symptoms return and I have to increase the dose again however my stools are a little firmer although I find I need to run to the loo within 15 - 30 minutes.  As I said before I've just begun this journey so everything is still a bit out of whack whilst my doc and I work out what works for me.

    We're all different and what works for one may not work for others so following a balanced diet, fat reduced, is best.  Also be aware that stress increases symptoms of any disease so try to find something which relaxes you.  Regards

    • lawrence1969
      lawrence1969 Reefsider

      Posted

      Thanks so much for your advice Reefsider and sorry i didn't respond earlier
    • lawrence1969
      lawrence1969 kapil53458

      Posted

      Kapil to be honest its being very up and down. When the Creon was increased i stopped taken the 10,000 as adviced by the specialist and started taken 25,000 doubling up x6 when taken meals. This initially was working my stools became more solid after sometime i noticed that my pains returned. Gradually my arms start hurting and my back. After my stools becoame soft/loose and that's where i am now. So there has not been a lot of improvement. Thanks for asking after me.
    • kapil53458
      kapil53458 lawrence1969

      Posted

      lawrence... i can understand your situation, however if your doctor says you to be on high dosage of creon, then pls do continue with his advice, you can probably start with creon 10000 after a month hopefully, but have in mind to eat porridge in possible diets-- cooked with turmeric in coconut oil, walk and walk whenever possible, dont get discontiue doing the great work, my good wishes are with you...smile
  • Reefsider
    Reefsider lawrence1969

    Posted

    Hi Lawrence, no need to thank me we're all on the same ride.  Pass on any helpful tips you find.  Regards and honks (the geese story)

     

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