Chronic Calcific Pancreatitis_Problems and Life Expectancy

Hi Stuart there should have more people like you on this forum

what you write it give hope to people like me,sick reading  stuff like you only have 7 years left to live and your life is finished,but as you have stated you can live a normal life and grow old if you keep to diet no smoking and no drinking and controling your pain meds, people with CP will have to tell themselfs its not a death sentence,people die everday but its not with chronic pancreatitis,we should enjoy life while were still on this planet,so come on all you CP guys go for it theres nothing to lose anyway

I was diagnosed with calcified pancreas in 2007, this year I have had two MRI scans, 2nd for a probable cyst but thankfully there's none - Yet. I have had chronic calcified pancreatitis for 7yrs now and the pain is unbearable at times, agonising for the rest. Thank you for your post on here, it's encouraging to read you're proof CP isn't "the end" like we're led to believe! I wondered if you still have pain? Was surgery painful? I'm on oxy's, quite a lot and have been for over a year, now they want to try a cealiac plexus block around my spine. I've scared, it's a 100/1 safe with a 50/50 chance of any relief and I'd still be on my meds! I'm worried about it, heard many bad story's and the 50/50 chance it'll work seems a needless risk - Or am I wrong? Any experience or advice would be appreciated. I'm 36, feel like I'm 76 with all negative views about my future from numerous doctor's and so called specialist. I feel like a guinea pig and very confused! Thanks for reading and I hope all people suffering CP are staying strong :-) 

Hello: quick question, did you continue to eat dairy foods even with takin magnesium or you cut out the dairy in the healing process? Please let me know. Thank you

Hi, I just signed up to this site and I am really not sure at all how to use it. I have some questions about my chronic pancreatitis and I see I am not alone with this terribly painful disease. Could you maybe help me out with the so I can ask some questions? Or I could just ask you 'stranger' lol. I'm stupid,

There are no stupid questions when it comes to living with this disease. Different diets work better for different people and many of us have different underlying causes. I had pancreatitis for the first time when I was 4 years old, I am now 30 years old. My pancreatitis is caused by cystic fibrosis and I manage with a strict diet and rest. I have spent my life dealing with this and there is always more to learn, please let me know if you have any questions or tips for me to try.  

You are to be admired. Having to live with Cystic Fibrosis on type of CP must be something fierce to live with. I had a very close cousin when I was much younger who died at the age of 18, and at that time she was the oldest living person w Cystic Fibrosis. We have come a long, long way, but we still have a long way to go!

i have had CP since a very young age, they couldn't even diagnose it back then. After it initially appeared It lay dormant for several years, no pain and gaining weight. Then, out of the blue, it struck w a vengeance. I was hospitalized three times in one year with one of the visits lasting over a month. They had to practically drag  me from the dead. 

I am now a severe diabetic. As most of you in this group already know, the cells that produce the hormone Insulin are located in the pancreas. Over the years my symptoms of pancreatitis have gone from Acute (which are just tht, incredibly and unbelievably painful. Morphine has no impact on this pain what so ever, NONE! It's intolerable!) and now I have much milder attacks that I can at times maintain on my own for a few days w/o hospitalization. But with that change in my CP, my diabetes has gone wild, having to take 3-4 shots a day and then bottom out every few days. And it's not a gradual slide, it's quick, super quick! Pretty scary. Just wondering if any of you have heard of a third type diabetes called "brittle diabetes"?  It is supposedly more common for us with CP to have this type of diabetes. 

My husband died at an extremely young age of a rare form of liver cancer. It was found while he was having his gall bladder taken out. One of the complications of that surgery that happens OFTEN is called SOD. While taking out the gall bladder the Sphincter of Oddi gets nicked and causes pancreatitis, which sometimes is chronic. He had terrific pain after the surgery and I just knew in my heart that it was pancreatitis and I was right. What was weird was the one thing that worked for 4-5 people on a thread about SOD. Warm Water. They didn't have complete pain relief but they did get some relief when they drank a cup of warm water. My husband got relief when he would get into our extra deep soaking tub. He would have to fill the tub to the top so he could kind of float a little, get some weight or gravity off of his abdomen. That would NEVER have worked for me during an acute episode. I could barely walk and couldn't go more than 20-30 minutes w/o vomiting, couldn't keep bile down much less water!  But some of u might give it a try during a mild episode. One other thing quickly, in response to Norbert01. I had a Dr probably 20 years ago advise many of the same things your doc advised you and it made a big difference. Things like severely cut your fat intake and to eat 6 meals a day, but now I have to watch my carb intake too!

The best of life to each of you. Staying up during this process will be the hardest thing you do!!  BUT, you will learn to live with it.

 A lot of you are probably feeling depressed because you feel like your body let you down, and maybe it did a little. Maybe it also saved you by learning to survive, to endure in spite of......

God Bless and good luck to you MickieD!!

Thank you so much Lisa for your story and blessed encouragement <3

jamesh78.. curious if you had the Celiac Plexus? My specialists were all set to do this procedure on me for basically same diagnosis. But it was my family Dr who suggested that this could be a lethal procedure. With Pancreatitis we need our pain, as a gauge to determine how sick we really are. If you cannot feel the pain in conjunction with the symptoms you could be gravely ill and not even know it ... Right?

Hi everybody i am new to this site. My daughter was diagnosed with chronic pancreatitis when she was 8 years old they said its because of a cystic fibrosis gene. Its so reassuring to see so many people staying positive and giving hope to others facing the same problems. I am a single parent and i am terrified for her future short and long term........i am currently working part time but feel awful leaving her at home alone when shes having a bad day, can anyone tell me if i can claim any benefits at all? As i dont think working is exactly working out for us right now. Stay strong and stay positive. god bless

Thank you for inspirational note I'm happy you have controlled your pain managment , I'm still on the morphine tablets awaiting a surgical procedure , good luck too you and thanks ,,yours Ivor ..

 

Unlike almost everyone else I've read here on this forum, I've not been officially diagnosed with CP, but I've had all the symptoms of the AP and CP. Also I did have a short hospital stay for acute abdominal pain about 5 yrs ago, but I think at the time I was misdiagnosed. After that attack and for the past 5 yrs, I thought that I've had gallbladder issues(which run in my family), ie the upper abdominal pain that radiated to my back which would crop up every morning when I ate too many fatty foods the day before. For the most part, I have done all the things you say to do for CP, except the exercise, but I did them for what I thought was gallbladder issues and may have been or may have been CP. Since they are related, the diet was what helped me the most.  I found the diet by doing a Google search for gallbladder &  finding a web site that is called gallbladder attack dot com (take out the spaces). I went on a very strict diet that was on the site...and that got rid of my pain within days. After a several months  being on and off of this diet (depending upon if I was in pain or not), by accident,I discovered that I could totally get rid of the upper abdominal pain that was radiating to my back, within 15 seconds. Each time I had the pain, I was quite sure I'd eaten the wrong fatty food the previous evening or late afternoon. If I had  severally over eaten some fatty things, like peanut butter and chocolate and possibly something like cheese,  then I would just stay on my newly discovered treatment for a day or 2 and all pain would go away with in 24-48 hrs. It works every time for me..It's never failed me. What I do is... if I wake up with pain radiating from my upper abdomen around to my back,I go straight to my refrigerator and get out a lemon (which you can get at any grocery store). I put the lemon into my microwave for 15 seconds on high (this is not necessary, but the lemon will give you more juice if you do this). Once heated, I then cut the lemon in 1/2 and I ream the lemon on a juicer ( or you can just squeeze it) . Then the important part....I drink the lemon juice (which is usually only 2 tablespoons). Then I rub what's left of that 1/2 of the lemon on my fore arms and on my face (lemon is also good for the skin & it get absorbed into your body faster that way). After 15 min I rinse it all off. Typically my pain is gone in 15 - 60 seconds after drinking the lemon juice. I save the other half of the lemon in the refrigerator for the next day. If I have really over done it and eaten lots of fatty foods the previous day or previous evening (typically that would be chocolate or peanut butter) In stead of refrigerating the other half of the lemon, I squeeze that half of the lemon into a 12 oz bottle of cooled (but previously boiled water [I've drank only boiled spring water for the last 5 years, since shortly after my original attack]) and drink that all day. I also may have the juice of a 2nd lemon during the day or evening if I feel I need it, but I always give the 1st lemon, a good 2 hrs to work before I'd have more lemon juice. Hope that helps someone...it's been an incredible help for getting rid of my pain. Now I'm reading up on pancreatic enzymes and plan on taking them, starting next week.  

BTW for those who's CP has advanced to Kidney disease, I was in stage 3B last year and put myself of a strict (low protien)diet for Kidney disease and now I'm greatly improved and have healed my kidneys to point I no longer have Kidney disease. (I also take a great number of vitamins, minerals, & hearbs every day, so I'm sure they, along with the diet, helped my Kidneys heal)

Dear JanaDell, 

You wrote:  "for what I thought was gallbladder issues and may have been or may be CP". Chronic pancreatitis is not that hard to diagnose, and beside that it's incurable, so there is no "may have been".

I also don't think that it's very wise to take pancreatic enzymes when there's no lack of them... Why would you need them?

I'm happy for you that lemon juice helps you to reduce your pain, and even that fast! (within a minute), but I doubt that it works for real CP-patients that well because it has never been established, and if it would be that simple I'm sure it would have been.

By the way, Are you sure you had a kidney disease, were you diagnosed? 

 

Hi Janadell,

It sounds like you have a great way to keep to ur pain at bay. My husband started the thing with the lemon water for me a while back and it does help quite a bit. Just a suggestion though, before you start pancreas enzyme replacement, please speak to your Dr first. I thought that I would just start taking over the counter enzymes and now am in the middle of a really bad attack because of it. I now realize that I should have had my levels checked beforehand. Please be safe and God Bless you.

Thank you so much. I've been having severe pains for the past three months. I read your post about the lemon juice and after drinking the juice of half of a lemon with warm water, I am pain free. In about twenty minutes. I will start your recommended diet tomorrow. Thank you

Thanks for your suggestions it will help for all of us whose suffered from the CP

Thanks to you I began taking blending aloe vera with/without a piece of papaya each night before bed. Every mornjng before breakfast I juice a lemon in warm water and drink. I also use a half teaspoon of baking soda on a cup of water every morning one hour after breakfast and one hour after dinner. I haven't felt any pain since and that's three weeks ago. The pain subsided within 24hours after starting that regime. I also take two grapeseed extract capsules and one tumeric capsule twice per day, drink at least 4 bottles of water daily and eat lots of fresh fruits and vegetables.

I feel perfect most days and I no longer have bad painful days.

I am praying for a cure and I believe God has sent it to me. Try doing the above and you'll get better too.

All the best.

The lemon juice works for me and my pain has decreased by about 90%. Add the baking soda twice daily, an hour after meals and see how it works wonders for you.

Very sound advice. I will be following it to letter in the hope that my newly diagnosed cp will get better. Thank you much.

Thank you SO MUCH!!!  A definite plan is so encouraging!

Thanks Ann for your input.  Could you tell me how much of each fruits and vegetables daily?  I'm good for vegetables but difficult to get much fruits down daily.  Thanks again!

THANK You for your post and especially the list! I was diagnosed just last week, after unexplained weight loss with upper abdominal pain. The calcification was noted about 3 years ago on a CT scan for another issue. Amazingly I am not on any medication at this point. I no longer drink or smoke, haven't for almost 20 years but the damage from both is catching up to me now. I have eaten a vegetarian and low-fat diet for many years and I am very active physically and these habits are my saving grace. I would have surely had more symptoms earlier if I hadn't changed my lifestyle. I do not have diabetes nor high cholesteral and that also has surely helped me get this far. I actually do most of the 5hings on your list, most recently eating less but more often, about every 2 hours, trying to maintain weight. The one thing I would add to your list is to stop smoking. Along with my 25 plus years o

f hard drinking, I smoked for 34 years. Doctors and research all show smoking contributes. My hope is to remain medication free...doing it one day at a time, with discipline and faith

Hello Nobert, 

While reading your post, I felt that is me itself. I have gone through the same . 2.5 years back I was hospitalized for chest pain and done angiogram and the doctor found nothing but gas . 

He send me back with pills for acid re-flux. Later I developed constant pain in right side of abdomen and doctor identified that I am having EPI ( Pancreatic insufficiency ). May be due to the low levels I am not yet classified as a CP patient in-medical terms. 

But I digest my food on enzymes, otherwise I have heavy pain in my abdomen and back . Also foul flatulence is one another thing . 

I am managing my days with controlled diet and good exercise. 

I will start drinking fresh aloe-vera juice every night.

Your advice is extremely good and I almost is in the same diet plan.

I would like to know how you are doing now and any new inputs for managing it better