Fighting For Chronic Pancreatitis

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Hi, 

Firstly so excuse my bad english. 

My names Umut.I'm from Turkey and age 33. 

I'm married and we are wating twin babies with my wife smile 

Last January have serious disorder which is name "acute pancreatitis

From that day forward my pain never stop. 

last month i have it made EUS.Depending on the eus i'm not CP but i'm near of it doctor said.And she have given me ; 

Kreon for digestive and Lyrica for my pains. 

My psyhology so bad from 4 months. 

I'm so happy because of in this grop peoples understand my pain my feelings for this bad disease sad 

I am using supplements too.And i want to share it's ; 

- Grape Seed Extract --> Total 600mg a day (three times a day) 

- Curcumin Extract --> Total 1500mg a day (three times a day) 

- C Vitamins --> Total 4000mg a day(four times a day) 

- Multi Vitamin --> only 1 time a day 

- Green Tea --> three times a day 

- No eat, no fat, not oil diet 

Now you will ask me that supplements work out for pancreatitis inflamation and pain --> My answer presently no.But i believe it will works in several months later. 

Now my questions from you ; 

- Does this disease heal completely or not ? 

- How can i dull our pain? Please give suggestion. 

- What is the lenth of life? I hear that we can leave too long as other peoples as.Is this rgiht ? 

I feel that so alone. Because this disease not prevail in the world and also my country.I think we standt by for eahothers. 

that's enough for now smile 

I'm waiting for your news. 

Umut 

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14 Replies

  • Posted

    Sorry to hear of your problems.   I think that you need advice as to the difference between acute and chronic panceatitis, there is quite a gap between the two types.  I have chronic brought on my radiotherapy thirteen years ago.   You are quite right when you say we need to help each other as there doesn't appear to be much help available from GPs.  Sadly I am not able to give advice at present as I have only been diagnosed for a couple of months and like you I am trying to find my way forward.  I do hope that you will find that others will get in touch with better information.   Congratulations on expecting twins, they will be very special and I am sure that you will live for a long time and enjoy bringing them up.
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    • Posted

      Hi sue,

      Thank you so much for your advices.You are so kindly.

      I have learned antioxidants is much important things for this disease.

      Have you ever try to take antioxidants?

      Report
  • Posted

    Don't apologise for your bad english. I should be so lucky to be able respond in Turkish. It is scary and theres is little to no information. The Dr's don't tell you anything either. My husband was diagnosed after 12 months of vomiting and pain and varying change in his stools (lovely dubject I know but a necessary discussion fir this group unfortunately) He has had 2 upper and lower endoscopy. An a duodenal ulcer was found , treated and cured. Ultrasound, mri and ct scans.where a pseudo cyst was found at the head of the pancreas. They sent hin to the Marsden fir an ultrasound endoscopy where they confirmed no pancreatic cancer and put ???? against acute/chronic pancreatitis. He hasn't been on any medication and nothing has shown in the numerous blood tests he's had. The consultant said in December early chronic pancreatitis. When we asked should he be on any special diet or do anything they said no and he could have a drink at Christmas which we found shocking. Luckily my husband isn't a drinker and if he has this its as a result if a serious crush injury at work several years ago. I say if for a reason. When my husband went to see his gp about a pain he felt he could have grumbling appendix. Last weekend he was in enormous pain. He went to hospital on Monday and had a ct scan and x rays to be told he had appendicitis. He had surgery to have it removed yesterday. I'd love for it to have been this all along and a misdiagnosis but whi knows? That is where the problem lies and your left to get on with it. I see loads of people on here that have had cp for years so it doesn't mean imminent death although you may experience different problems and a lot if pain. I wish you all the best. Congratulations on the teunsu. Remain positive and live as normally as you can si this wicked disease doesn't get the better of you. Esdu to say I know. Let's hope more research is done on this condition. X
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    • Posted

      Dear Theresaa,

      Thank you so much for reply.I so upset from your husband.But i believe that everythink would be fine for us.

      Thank you so much again,

      Umut

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  • Posted

    Your English is just fine.  Sorry to hear about your pain, I know it can be a difficult thing as there are more questions than answers out there.  There are so many variables with CP to determine life expectancy.  As others have posted you can live a very long time and yet still have a decent quality of life.  Not saying there will not be speeds bumps along the way.  I think you are doing the best thing anyone can do and that is with your diet.  Staying away from foods with lost of fats and oils is an important key.  Staying away from complex cabohydrates is another good step to take.  I've had CP for almost 3 years and seems like everyting sets it off including a regular glass of water.  I recommend keeping a log of what you eat so you can narrow down what inflames the pancreas and what does not.  I would also recommend staying away from the opitae painkillers as long as possible, but if necessary due to the pain take them.   From what I have been told by my GI is my CP will remian with me until I do die, but again take the steps you can to live a good quality of life with the disease.  Also, I would look at pain management and try accupuncture or mind based stress reduction, which can help alleviate the pain for a little bit.  I find anyting that can reduce the pain no matter how slight is worth its weight in gold.  My prayers are with you my friend.    
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    • Posted

      Dear William,

      Thank you so much for your a beautiful thought, explanations and friendly looking.

      My prayers are with you too Wlliam

      I was upset from your CP too.

      Nobady understand me.There is no people like as me in my area.I'm afraid, but i don't know why i'm afraid.Maybe i'm afraid of, i'm never eat delicious foods, maybe for death, maybe for my twin babies future.I'm also fighting off my depressive disorder with obsessive compulsive disorder (ocd).

      But believe that i'm cope up this disease.

      Have you ever tried antioxidant like grape seed or curcumin ?

      Thank you again

      Umut

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  • Posted

    Keep researching, you are doing the right things but stress and worry can only add to the problem! I  have found the busier I am , the less I dwell on my pain and this issue. There are many times it slows me down, but I really push to find a way to redirect my thoughts. Hey think of it this way, those twins will keep your mind off of it surely! Missing food is difficult, but when you count the other things in life that you are here for, it's not so big of a deal. And it is possible to live a long life with this as long as you take care, which you are!

    Bless you..

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    • Posted

      Dear Tolle,

      You are so kind person.I have read your message with my wife.Your words give us a big hope.I have taken a photo at your message.I will keep it my near.

      Thank you so much everythink.I hope you will leave too much and too good and healty.

      Regards,

      Umut 

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  • Posted

    i smyrnaki.. your english is same as mine.. hehe.. i want to tell you that your disease is cureable.. what happens in general is that people who are diagnosed with acute pancreatits, gets cure after a certain day medication .. and post that they dont pay much attention again on their diets and eating habits... then eventually after some time they get another attack and followed by 4 5 attacks it becomes chronic ... this is how it get worse so i want to advise you take low fat diet... be specific for your diet.. lets walk whenever you get time.. walking is best exercise in the world.. dont worry ... acute pancreatitis would not become chronic or more worse if you would take care of yourself... remember that you always keep a bottle of water with you .. have pineaple extracts in your breakfast.. try to have cut your diets in to more simpler and short fat free diets.. dont be empty stomach.. have your own shedule because you are about to cure your disease.. so u need to be diet specific and need to focus on your goals.. beware of things that not to eat.. never drink water immediately after your diets.. take a time of  1 or if possible 2 hours and then drink water.. because post eating.. your pancreas releases necessary enzymes.. which if you will drink even a bit water.. it will not release these enzymes and this leads to indigestion .. i would like to congratulate you for twins.. take care .. your life will be awsome.. have fat free if possible...
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    • Posted

      Hi kapil53458,

      Firstly thanks so much for your advices and good sense.

      I have read your "i have chronic pancreatitis from last 3 years.. what should i do?" discussion topic.And then believe me i print and paste to my cupboard.Then put on my shoes after i'vee started to walking smile

      Yes you are right.Mybe this disease never got healed but it's controllable.We must eat low fat and if it possible never fat+oil diet.

      Fruits (except alligator pear) and vegetables (all type i think) is very good choice.And no fat milk is good too for calsium.Egg white ise super source og proteins.

      1-) Ok.I will eat no+oil diet

      2-) Ok.I will drink pineapple on my breakfast

      3-) Ok.I will walk everyday

      4-) Ok.I will eat small meals and never get empty my stomach

      5-) Ok.I always keep a bottle of water with my near

      6-) Ok.I will never drink water after my meals.

      Thank you again your advices.Have a good life.But i want to ask you important question.What are you doing for your pain ? Please give a comment for this

      Umut

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    • Posted

      thank you very much.. 

      pain in stomach generally occurred to me whenever i ate fatty diets or anything which has fats.. like in the parties i had pizzas.. or cheesy cooked food.. this should be avoided always.. when i ate chocolates and nuts then also i use to have pain.. then i begun to think that whenever i eat such things i get stomach ache... the pain is sth which is intolerable for some time even days take to get back to normal... in that case the only thing i could do is to take out whatever inside my stomach.. for that i used to have SAFELAX convenient singe dosage sachet in a glass of water.. it is used in constipation.. then loose motion starts after some time.. and whatever inside the stomach come out .. the problem is that lose motion dont stop immediately.. it take a day time.. for that i used to take riddol tablet to stop this.. if pain is like manageable then i used apply ice gel which is generally used for knee pain relief.. on my stomach where there is pain ... and i get a temporary relief.. such instances have been lots of time.. and if pain is more i go to my doctor and ask for help.. then he starts his treatment of fasting and drips for at least a day or two..but what i feel is we should avoid such situations and we can do this by concentrating on what not to eat.. 

      i believe you will never have such pain again if you will have low fat diet.. whenever pain occurs be on juices and avoid high fibre foods for a day or two..even we can do fasting in that situation.. this can give you relief.. have your medical check ups regularly and dont stop walking .. and eating fat free.. this is magic which i have told you.. believe me..

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    • Posted

      hope you are doing good smyranki... if anything i could help in knowing more tell me.. now this saturday i am going to meet the boss of my doctor.. as he advised me to meet him and tell all my problems... i would love to ask you if anything that i can ask for you also.. may be he could have some better solutions to that... please write me back i want to ask him more and more.. we all are having same problems .. so the solutiong is gonna be same ... now what he will advise.. i would tell you all about that.. if anyhting you have tell me freely..
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    • Posted

      Hi kapil53458,

      I'm fine.Thank you so muxh for asking.You are so kind person.This is very big politeness for me.

      - If you want we can speak this issue face to face on skype or using another programs.Now i will send you my skype name with my mail infomration. Please check your message box.

      Thanks so much again.

      Umut

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  • Posted

    Your English is fine. In answering your questions, unfortunately if you are diagnosed with Chronic Pancreatitis it does not heal. Its a progressive disease however, there are several ways to treat the most symptomatic aspect and that is pain. Pancreatic supplements, stents to relieve pressure for drainage in the ducts, surgery and ultimately a pancreas removal as an end result.
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