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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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  • mary_kate1973
    mary_kate1973 lawrence1969

    Posted

    Hi, I have recently been diagnosed myself. GI prescribed Zenpep 25,000. I was advised to take with meals. Right before I eat. It has helped with color and hardening stools. I have read so much stuff on the Internet as well and really confused? Doctor also prescribed B12 and vitamin D daily. I  don't have that much pain. Like you on a scale of 10-1 maybe 1. Not everyday and Usually when I have an empty stomach?  My doctor said to cut back on alcohol and stop smoking. I have cut back on both and plan on quitting smoking completely. I am reading a book that is really good. The Easy Way to Stop Smoking by Allen Carr. Check it out. Really scared and this is taking over my life because I can't stop thinking about the long term effects of this and the life style change it demands. Doctors don't seem to be to worried about it- just say so to change my diet, but how? One says low fat the other says high carbs, low protein. The one told me not to change anything because the Zenpep with correct my digestion of fats! So super confused. I would check with your doc because i am pretty sure your supposed to take the Creon right before you eat not after. May understanding is the enzymes are released to time with the digestion on food. Maybe that will help..Good luck and I hope you stay healthy. 
  • donna58269
    donna58269 lawrence1969

    Posted

    I also take zenpep 25,000  2 caps at the start of each meal. Started 2 years ago when diagnosed with cp and pancreatitic insuffiency   Really helped me a lot with gi symptoms and helped gain back some weight. On the cusp of type 1 diabetes.  Started glucose monitoring but no insulin yet. Guess I m lucky. No pain so far!  Try to read everything I can on cp and epi. It's all pretty confusing.   When I ask my gi dr what to expect he says there's not a lot on research  especially on non alcoholic patients. Anyone else in a similar situation ?
  • mary_kate1973
    mary_kate1973 lawrence1969

    Posted

    Hi Donna, did you start with one cap before meals and then increase? Not real sure it's doing everything it's suppose to. Sometimes I have a dull pain in my side/stomach and goes away after eating. I read somewhere that to many enzyme's can do harm. My docs have said them same to me, not a lot of info on this. Hard to believe with so many people suffering from this. Quick back ground- around 7-8 years ago started having pain in my right shoulder back area- once or twice a year. Had Lower CT's (4) and sonograms (3) and Hida Scans (2) threw Feb 2015. All normal, docs thought it was gallbladder. Had blood work done in April that showed high lipase 131-  Had an acute attack in June and was in the hospital for 2 days. Lipase was 216. Once released had an EUS preformed that showed damage to my pancrease. So taking these enzymes are a little scary. Not to mention everything I have been reading online. For the most part pretty pain free. Have you changed your diet? What about alcohol? Thanks for any advise or experiences you have been through- MK
    • donna58269
      donna58269 mary_kate1973

      Posted

      My symptoms where weight loss about 15 lbs,fatigue, joint pain,osteoporosis ,prediabetes.  Gi dr did 72 hr fecal fat test,ultra sound and endoscopy.  I flunked the fecal fat test. He started me with 2- 25,000 zenpeps three times a day.  Now two yrs later taking them 4 times a day. He monitors me a lot.  Started at month ck up then 3 months etc to make sure its ok. Just had eus done it was normal. But the Drs still say it's cp. I eat a very healthy diet. No fast food or fried. But I do watch my fat intake  my dr told me I could have a glass of wine.  Lots of controversy there! I asked if I was lucky to not have pain or was it just early on in the disease he said "both"!  I ve started meditating and going to the gym to help with coping 
    • mary_kate1973
      mary_kate1973 donna58269

      Posted

      My weight has been stable for last 4 years between 125-130. So that make me wonder if enzymes are needed. Has me taking 25,000 3 times a day with meals. I am assuming they also help my pancreas not have to work so much. I have gained about 3 pounds since I started them about a month and a half ago. Doc has not done fecal test, going to request to have done. Seeing my regular doc next week and getting a second option from another GI next month. Just want to make sure I am on the right stuff. Yes, the pain thing just confuses me. Some folks are really suffering and not having hardly any discomfort makes me think it's not chronic. I had the one episode in June and diagnosed chronic? I can stand not having a cut and dry plan on what to do- I let you know if I get more info from the new GI. Thanks for listening, MK
  • melissa_in_nd
    melissa_in_nd lawrence1969

    Posted

    I feel your pain, I too take 4-5 zen pep capsules with meals and snacks. I have pain all the time, waiting to hear from pain clinic, it's a waiting game, wish you all the best
  • manda1030
    manda1030 lawrence1969

    Posted

    Lawrence,

    Hi, I have the same results with Creon except I was on a very high dose. I can not use it it makes me cramp up even worse and throw up. It is good you quit drinking. I am glad your pain levels are low. You don't want to know how bad it can get... I was so the vapor for 6 months it got to wear I could not breath. I went back to smoking. My husband had the same trouble. A lot of people really like it though everyone is so different. CP causes all sorts of problems. Vomiting, loose oily stools, yellow or clay colored stool, dehydration, extreme pain and so on... I have had it 15 years I wish you the best of luck. And hope your pain levels remain low. Hugs and hope

    Manda

  • lawrence1969
    lawrence1969

    Posted

    Thanks Mary  I also want to thank everyone for the positive replies to my message. when i book my next appointment with my GP i will ask him about Zenpep. i enquired from the pharmacist in Boots the other day and the pharmacist told me its an american drug but is not sure if you can get it on the NHS.  It seems there is not straightforward answer to this problem. Also GP's seem to be very uncertain with dealing / handling CP problems. The more you ask questions the more uncomfortable and uncertain the GP'S become whnen answering..
    • manda1030
      manda1030 lawrence1969

      Posted

      Lawrence,

      ​I have also been searching for a different enzyme I found this one also

      ​Pancrelipase. i may have the spelling off a bit. I know it's frustrating my DR. nurse told me every thing was like creon but when I did a side by side comparision this one seemed better for me at least everyone is different. Just want to offer another suggestion just incase.

      ​good luck to you I hope you feel better soon!!

  • corinne34476
    corinne34476 lawrence1969

    Posted

    Dear Lawrence,

    I have to say first, you must take your creons before you eat very important.Im 65 years old and have suffered with chronic pancreatitis for 5 years. I Take 2 capsules before meals and a extra 1 in the afternoon.They are 25000 each. I am very sorry to hear of your stools I don't have the problem since taking my medication. I have been into hospital several times  and am on a substantial amount of tablets,including morphine, tramadol I wish I could go into more detail about this but I'm sorry to say I'm useless on the iPad and very slow. Best of luck thoughts are with you. Corinne.

    • lawrence1969
      lawrence1969 corinne34476

      Posted

      Thanks Corinne, i do take them before meals but i honestly have not seen any improvements. I have just re-read my first mail and i have noticed that i made an error by writing that i take  the Creon after meals instead of before meals.

      My major worry/anxiety are first my stools are not improving and secondly i am losing the weight rapidly that it is becoming very noticable to all.

  • kapil53458
    kapil53458 lawrence1969

    Posted

    hi lawrence.. i can understand your situation... i have been through such disease from last 3 years.. the only thing i would suggest you to keep a close eye on wht you eat .. its a matter of time and after that with your dedication to heal and get out of this situation.. will take you to better feelings.. i would advise you to completely stop drinking alcohol.. dont smoke.. have porridge in your meals.. drink water and have consult a very very good homeopath.. walk every time you eat something for 15 minutes at least. sleep well dont stress much.. 

    same situation i have been thru in past months.. but porridge is the only meal that helped me to come out of the situation. make sure u take only creon 10000 when u eat porridge.. porridge is meant for good stomach health.. in india.. whenever a child/ youth / or anyone who suffers from stomach disease .. they eat porridge having include some more veggies as per your taste.. just do it for a week.. i can bat you that your stomach will start becoming well and u feel better in a week or max two.. my hopes are with you..  

    when you eat porridge,, make sure you take only creaon 10000 .. i am again telling you this thing// after three weeks start taking creon 4000 after meal of porridge.. if possible be on porridge and pineapple juince for a week .. this is proven diet for pancreatic people.. any thing else you want to ask.. do ask openly.. i belive that i  can help you to a great extent in this matter.. 

    best regards,

    kapil

    • kapil53458
      kapil53458

      Posted

      one more thing..after two months stop all medicines.. just do wht ever u want to do .. but even after that dont drink and smoke.. it unhealthy
    • lawrence1969
      lawrence1969 kapil53458

      Posted

      Thanks Kapil i have readuced in weight drasticallyI also feel as if there is more to it than they are telling me. However the doctors at Hospital have conducted several tests and they cant find anything. my biggest problem is my stools they are soft and more times loose. If i eat porrige in the morning what advice can you give me concerning afternoon lunch and evening meals Kapil? Thanks
    • lawrence1969
      lawrence1969 kapil53458

      Posted

      Morning Kapil I was hoping to hear from you yesterday. Anyway i just want to ask a few more questions if you don't mind. Firstly are you saying I should have porridge for two weeks morning/afternoon/evening and pinapple juice and take 10000 creon before every bowl of porridge?

      Also how long would it take before i see any improvement? Also has anyone else used this or had similar problems like me with their stools not changing rather remain soft/loose. I would be grateful if you can respond to my mails today thanks

    • kapil53458
      kapil53458 lawrence1969

      Posted

      Hi lawrence.., i am extremly sorry as i was too busy in routine office work.. please don mind the delay in response..

      i can tell you the strategy:

      from the morning when u wake up... may be there some pain in ur stomach.. but just think they this is sth which willl no longer remain.. all u need to do is to walk for 10 to 15 minutes.. simply walk even u can inside ur home.. have a glass of normal water.. after half an hour have slices of pineapple not juice as ur stools are soft.. then after half an hour haveporridge cooked in coconut oil if possible, then again walk for 10 minutes.. then do watever u want to do.. for few days i would suggest you to be on porridge only.. this way ur abdomen will get time to be strong again.. as it has to do less work in digesting porridge.. in the night also porridge if possible.. you can have rice in the meal.. cornflakes with skimmed milk... or pineapple two or three times a day.. when you sleep make sure u don eat unhealthy or dairy/ fatty things.. but have take boiled veggies if possible.. do this at least for two weeks... and one more thing.. u should take enzymes after the meal.. its not a problem.. and remember only 10000 creaon should be taken with porridge.. if you get bored with porridge.. have include some different veggies include into these.. 

      other things to be added early morning are:

       

      once you complete your walk do headstand in asana.. it is the best asana for improving digestion and thought process which will keep you both mentally and abdomenly healthy.. 

      after a week include indian gooseberry into your food.. it is awsome once boiled and poured with sugar for some days..then becomes really tasty and good thing is there virtues do not ruin in any condition even if you heat gooseberry..

      take them any time u want

      and yes i had similar problem of stools, and now its improved to feel good.  with porridge your weight may be lossing.. but once you stop taking medicines .. then you can graduallly start with including curd and boild eggs and chicken also.. then gradually it will take you to be normal.. but first you have to concentrate on becoming strong enough to have get rid of medicine.. mine took 2 months ,,,i hope u understand and also i reduced 8 kg of weight.. and now i am not taking any medicines except homeopthy pills which are working good.. 

      i hope this will work for you.. my prayers are with you.. all the best and have a blast of dedication for healing it... 

      best regards

      kapil

    • kapil53458
      kapil53458 lawrence1969

      Posted

      hi lawrence ... i hope you are doing well.. what is the update.. how you are feeling now.. how is your progress of improvement in feeling comfortable and also pain relief.

      kapil

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