Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

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Just Diagnosed with Questions

transari
transari
Hello everyone. I was diagnosed with CP last week. My doctor has put me on Pancrease 16,800 units 6 times, pain medication 3 times per day and Cholestyramine Powder Twice daily (which i'm finding difficult to take due to horrid abdominal cramping and finding an actual time to take it where it won't interfere with the other meds I must take since Cholestyramine keeps medicines from absorbing properly). So I wonder if taking the Chol. Powder is keeping me from absorbing my Enzymes when I eat. Has anyone taken this medication? If so, how are you all taking it? I'm also taking Pristiq & Xannax for anxiety (which is really high right now...Gheez!) + Vitamin D Supp.

Next is diet. What do you all eat? It seems everything I eat comes out undigested. (Hoping the meds will help this problem) Reading online it always says lowfat diet...but what exactly is that? I've eaten low fat my whole life so i'm not sure what to change. But something must change as I cannot gain weight. If I eat fat it makes me sick. Suggesstions as to what you all eat would be appreciated.

Malnutrition and memory. Is anyone else having memory problems? I can't retain anything it seems or remember swat! :(

Life expectancy??? Everything I read on this is scary. What have your doctors told you? Does having CP mean I won't live to be an old woman. I'm currently 43.

Basically I'm a newborn trying to learn everything i can about this disease. You're comments are truly appreciated.

Warm regards & looking forward to getting to know you all.
deleted_user
deleted_user
Just wanted to welcome you to the group ! Hope you find some answers here.
transari
transari
Thanks Janeybugs
deleted_user
deleted_user
been diagnosed with CP since 2005 and i am trying to find the answers your looking for. there are 3 things i am sure of about this monster of a disease 1. the pain gets so bad there are times i thought i would break my back from spasms 2. nausea the dry heaves so bad i just wish my pancrease would come out in the mix of it 3. diarrhea 4-5 times a day is a good day for me..sorry to sound so gloom about it i just cant explain it any other way and you mentioned about the life expectancy during an attack i really hope it isnt long then there are days where i look at my grandchild and say i can fight this .. only it is hard to fight something you cant see coming.. i am also new here and i wish you the best of luck
transari
transari
txmudpuppy. I'm sorry you are going through this as well. Hopefully together through this site we can support each other and learn more about this disease. Hang in there and never give up no matter how much pain. I was reading Patrick Swayzes book..."time of my life" during my lunch break and he wrote something that struck a chord with me. Here it is:

"Pain is nothing more than a sensation, and you can choose to give in to it, or choose to control it. It's how I managed to sustain my career for this long, and even how I've managed to fight cancer. Pain, like fear, can even be your friend if you let it. It sharpens your focus and lets you know you're alive".

So I got this book on the bargain table at BN and wondered if he'd had CP prior to cancer. Well the book itself is basically movie roll this and movie roll that without mention of CP and only has one chapter on his cancer. But the paragraph about pain just sticks with me. I have pain every day and it has ruled my life for so long...I'm going to try my best to befriend it and maybe by coming to terms with it will be able to somehow function more efficiently. Maybe it's pollyanna thinking but I'm willing to try anything. :) You keep thinking about those grandkids. I look forward to getting to know you better. Good luck to you too
deleted_user
deleted_user
Thank you transari i am going to download his book sounds like good reading, and i as well look foward to getting to know you as well as everyone here better. maybe this is what i need to get it all out my wife bless her has been by my side thru out this ordeal but i feel she can only hear so much and i dont want to scare her more then she is
deleted_user
deleted_user
Transari- I would recommend speaking to a dietician. Avoid high fat, oils, nuts, raw vegetables, and watch your sugar intake. (this has helped me). There's a good research based search engine called medpub.net and there is a book I found helpful through that search engine as well. I hope this helps some! I'm a 32 yr old fm diagnosed this past year.
transari
transari
Chrisya - Thanks for the helpful information. I'll check it out right away. I appreciate the advice re: nutrition. I got soooo sick this weekend after taking my husband out for dinner for his birthday. It's so hard to eat out....the menu's never have anything that isn't loaded with hidden fats, butters etc. Good luck to you and I look forward to getting to know you more. =)
transari
transari
txmudpuppy - it's great to hear you have a supportive spouse. That's wonderful. I understand how you feel about not wanted to frighten her. You're a good person for looking out for her but I'm sure she wants to know it all good or bad so she can help you since she's very supportive. Just feed her bits of info at a time and then it's easier to process. =) My husband isn't supportive. He doesn't want me to talk about my illness at all. He actually told me on Friday night that this illness is nothing but negativity and he's not interested in negativity so don't bother talking about it. He said that the only things he wants to hear from me is light and positive chit chat and if i can't tell him anything positive then don't bother. =( He has always been self centered but this was just devestating for me to learn that I'll be dealing with this alone.
Talk to you soon and take good care.
tarabunnyears
tarabunnyears
Still sorting it all out myself. But, I know anything with codiene send me into an attack, so many medications can cause it. My doctor said he had a patient who had attacks from oysters.

For me, it is chocolate, ice cream and steak... all fatty foods.

Hope you find answers. I am still searching. It is confusing.
deleted_user
deleted_user
transari WOW this disease is anything but negitivity it is very real and very bad ..i really dont know how to answer the way your husband feels well i am glad we both found this support group then.could it be he just doesnt understand the severity of this that he just wants to block it out? anyway sorry you have to deal with this alone at the home front but we will always be here for ya. as far as my wife she at first didnt understand all of this either.but yes she got better in dealing with this
deleted_user
deleted_user
It takes a while to figure everything out, you will get there. I would suggest planning ahead if you are eating out, by looking up nutritional facts and always ask your waiter to hold the oils, etc! I'm sorry to hear that you do not have good support. Even with support, I've found having this chronic disease and all of the life changes that come with it, can make me feel very alone. Did the doctors give you a reason for your diagnosis? I have hereditary CP with a divisum! My big problems began after getting an abscessed cyst from an ercp during an attack, which left permanent damage. Oh, btw, I am extremely forgetful as well and have wondered if it's related to my meds or something.
deleted_user
deleted_user
Oh- and the anxiety is definitely normal with this. That has been difficult to accept as well bc I didn't have any anxiety problems bf this and now have to take Ativan in addition to the pain meds, So, you're not alone there either!
deleted_user
deleted_user
Make sure your doctor checks your blood electrolyes, calcium, and magnesium. During the years when my blood was so out of whack, I have big gaps, some months long, where I remember next to nothing. Things have improved somewhat with the enzymes leveling out my blood values. I will finally be moving into a place of my own again after 2 yrs of living with my kids, and it will be somewhat of a treasure hunt with surprises , because I do not remember what I sold , gave away , etc. My belongings have been in storage for 2 yrs, and I have been living out of suitcases, I hopefully still have what I need to get set up, but won't be sure till I unpack. AND....can you believe Great West life forced me back to work over and over again, with my mental state the way it was, and I am an RN. Thankfully I never hurt or killed anyone, but it was a dangerous spot they put me in. I hoppe that things improve for you soon..Sending a hug your way.
transari
transari
tarabuddy - I'm sorry you're going through this too. Thanks for the info on your triggers. It seems we're all 'hit and miss' on what triggers each persons attack... :/
transari
transari
tcmudpuppy - Thanks for the support. Cool beans about your wife. You're a lucky fellow to have a support system in your corner on the home front. My husband is aware of the severity of the disease. My hubby is Persian. His cultures and beliefs are somewhat different from most. Women/wives are not valued the same as American men value there wives. It's too hard to try and explain through typing...it would take 5 pages to get it out there. I'm happy I found this support group. And i'm grateful to you and everyone here for giving me someone to talk to. You hang in there too!! =)