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Long term effect of pancreaitis
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Hello group I'm new to this support group but feel that it is a great source of information and help. I have been battling severe pancreatitis since may 11. I have been in and out of the hospital since my first attack which the doctors told me was caused by gallstones and gallbladder surgery. I have stent draining s few pyseudo cyst and a feeding tube. I cant eat or drink for 3 months. The worse part is my husband and I have 3 1/2 month old twins out home that I cant take care of and spend no timewiyh since I'm always in the hospital. I want to know once this is over the likelihood pancreatitis can happen again? Can and will I ever live a normal like? I appreciate any advice and input?
Posted on 07/19/12, 08:15 pm
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Reply #1 - 07/19/12  8:37pm
" Sigh, no you won't, not the kind your thinking about, if you have Chronic Pancreatitis and it sure sounds like it then no you have it for life with all the nastiness that goes along with it, wish I could sugar coat it but that would surely be more cruel. Please read through some of the postings and you will begin to understand the levity of what your facing. There is always hope, perhaps someone will find a cure while doing research which unfortunately little is being done in that direction or perhaps if you believe then divine intervention, but other than those two I'm afraid your now part of a very exclusive club and one I could wish you had not joined for your sake. Please forgive my bluntness it's just this disease is not something to be taken lightly as many who have popped onto this site and disbelieved found out to their detrement. I'm sure there will be others who will come on and chat with you as well but since I was signed on right now I thought I would let you know the truth of things. If and I say this as something that it might be but am not trying to give you false hope, if it is acute pancreatitis and they can somehow manage to stop it from turning into CP then you have a chance, otherwise it's not so nice. I do hope the best for you and yours and as everyone here is I am always at your disposal to assist in any way I can. Be well and without pain always "
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Reply #2 - 07/20/12  4:42am
" Hi jd16, it sounds like you had a severe acute attack due to your gallbladder removal/stones. I ended up in the same situation a year ago(different trigger) with massive psuedocysts only my doctors chose to leave the pseudocysts for too long and I ended up developing an infection. It sounds like your doctors are monitoring your collections and are draining them. I was put on TPN instead of a feed tube like you have which also drove my surgeon crazy when I finally did have surgical intervention, restarting the GI system after long term TPN was not pleasant and extended my stay in hospital, she said a feed tube would have been much better for me. I ended up with a necrotic pancreas due to the infection where I had a partial removal of my pancreas which probably would not have happened I think if surgical intervention to my pseudocysts had happened earlier, my doctors did not see that my pseudocysts had become infected. It sounds like your doctors are being proactive. I live a normal life now other than my celiac condition after my severe acute attacks last year, there is a chance I could develop chronic pancreatitis per my surgeon but so far I am doing well so the pancreas can go back to a relatively normal state, even half a one like mine now, although it is always good to adjust your diet permanently so as not to trigger a pancreatic attack. It really all depends on how your pancreas reacts once your doctors have you stabilized and they get you back to eating regular food, then you will get a feel for your longer term prognosis. It is hard to make a determination on how you will end up, we are all individuals and on this board alone the variations in this disease are infinite. I had my surgery a year ago and since then no attacks. Best wishes to you and your family, and I hope you have a speedy recovery with no further complications and no surgery other than the stents to drain the pseudocysts. "
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Reply #3 - 07/20/12  8:39am
" A normal life?

You have said goodbye to that. Yes, I'm blunt...naybe too blunt for my own good but with this disease, it's the only way to be.

I was diagnosed with CP less than a year ago. I barely survived my first attack and I have had 7 since then. With each passing one, they hit faster and more frequently. I will never be "normal" again. I can no longer eat and receive my nutrition via a PICC line. I can have some liquids but they still cause pain. I can consume ONLY those that are completely fat free.

I have persistant pain, nausea, vomiting, diarrhea, electrolyte imbalance, malnutrition, extreme weight loss, lethargy, loss of energy and strength and periods of depression over what I have lost because of this disease. It has taken away so much. I've been in and out of the hospital and have doctor appointments weekly. I have to take Oxycodone to control the pain and Phenergan to control the nausea. I have Ambien and Xanax for the sleeplessness and anxiety that comes along with all of this although those are rarely used.

There is no real cure for this disease. It can be managed to some extent but it really only treats the symptoms. We have to watch ourselves so closely. We are restricted in so many ways. CP is an extremely difficult disease to live with. We never know when we can get sick and we are almost guaranteed a hospital stay when we do.

Some life.

There is one thing I learned that keeps me going and that is this: There are a lot of diseases that can take your life. CP is one that can take OVER your life...if you let it. Fight back. Stay alive. That is my ultimate goal.

We are all kind of a kindred spirit here because we all are suffering from the same thing. The support and advice I have found here has been phenomenal. We are here for each other.

Laura "
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Reply #4 - 07/20/12  9:21am
" Thank you all for sharing your stories and giving me feedback. Geordie73, your situation sounds similiar to mine. I also have necrotic pancreatitis. The doctors told me that this is an isolated acute attack but i will have to monitor it for a year so they can see once all the tubes are out and the cyst s are gone how much of my pancreas is still working. What triggered your pancreatitis Geordie73? Thanks Lucy "
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Reply #5 - 07/20/12  11:31pm
" Keep in mind that an accute episode does not automatically mean that you will progress to CP. If you do have CP then you should know that it will progressively get worse. How quickly the deterioration happens seems to be different for everyone depending on why or how we have CP. I've been doing this for well over 45 years. I struggled horribly early on, but half the battle was understanding the disease -- understanding my limitations and learning how to live within those restrictions. There was little to no information given to me by doctors (not that that has changed much today) but there was no internet access or support groups... and I didn't know anyone else who ever even heard of CP. My point is that eventually I found a way to make it through each day and found a new "normal." So many others on this site are far more sick than I am on a day to day basis. Although I've had many surgeries and have fought my way back many times, I can still work, eat and live a fairly normal life style -- I have found ways to "live" with this disease. Don't give up hope! Medicine changes every day and hopefully they will find a way to help you! "
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Reply #6 - 07/21/12  1:29pm
" 45 years? what are you counting when you were in vitro also? hee hee hee, your not old enough to have been fighting it that long,,what r u probably 28 or so...close?...Hope ur having a wonderful day just watch the booze intake, lol, hee hee hee "
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Reply #7 - 07/21/12  7:53pm
" My pancreatitis officially was caused through alcohol, but I also had gallstones, high triglycerides, was overweight and more than likely I was a latent celiac. I think Paula makes a great point, acute pancreatitis does not necessarily lead to chronic pancreatitis. I had my gallbladder removed once my pancreas had recovered enough that I could endure the surgery. Chronic pancreatitis is a terrible disease as described by the other posters, but it sounds like you are still in recovery from your acute attack, so as time goes on you will find out whether you will end up with a chronic condition and to what degree. It will be a year for me since my major surgery to remove the infected part of my pancreas August 5th, and I have not had any other attacks since. My diet has changed a lot because I want to minimize possible future attacks, no alcohol, and a low fat diet that due to my celiac condition also eliminates any gluten and I think I am also lactose intolerant. Beyond everything I do feel good each day and I can deal with my diet, it's not so bad. I do have the potential to develop diabetes since I only have half a pancreas but I monitor things and I don't worry about what may or may not happen, I just try to give myself the best chance to control my health. I know it is hard to stay somewhat positive when you are in the middle of recovery from pancreatitis, I was pushed to the limit last year, but I made it through. Hope all is well and wish you the best. "
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Reply #8 - 07/22/12  11:38am
" tsj444: 28? you are too sweet! Actually I'm 51 and have been having CP episodes (horrific stomach aches) since my earliest memories, probably 4 or 5 years old. I wasn't officially diagnosed until I was 24 years old (and almost died because all the doctors thought I was making it up!). Not that it matters on how any of us developed this disease, but I don't drink. I tried to in college but quickly learned that it was incredibly painful. blah! it definitely messed up my social life back then! Although it would be nice to be able to at least socially drink, it doesn't really impact my life today. Like I said, you eventually find a new "normal." "
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Reply #9 - 07/22/12  6:00pm
" Yeah Yeah you women always lie about your age wit your going the other way ok now I'm officially confused, hee hee hee, normal state of mind for me...Long as your doin ok then it's nothin but a number....Troy "

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