I was diagnosed with CP in 1989, what a long long time ago! I am a 53 year old female, tjis disease has certainly played a major part of my life. I am constantly in pain, I can’t control my weight, along with all the other problems that comes with a degenerative disease. I have 3 beautiful healthy childreln and the best husband in the world. It’s only been the past 12-14 years that the CP has been rearing its ugly head. If I can ever be of any help to anlyone please let me know.
Hi… I am new to the site and just wanted to let you all know I am here. I have had CP for 7 years now. I was living in AZ and had to move to Cali just this year. Starting all over with new doctors. My pain has never went away, I just manage it. Today the pain was so bad I decided to get help and stop thinking its going to go away. next week is my first visit with my new GI doc. I am hoping that he will listen and understand that eating a “special” diet and feeding me pain pills all day will not make this go away. I take my med’s every day with every meal. I have been vegan and that didn’t help either. I have been in and out of the ER since I moved here. I want real help and I want it now.
Thank for listening to me vent.
Hi, New to the group but thrilled to find you. I have chronic pancreatitis with divisum. I have not discovered what works food wise. I can use advice. I have tried juicing. I have tried just eating what everyone else eats. I have tried eating nothing when things are at their worst. When I just can’t handle it I take a pain pill but I don’t like going there. I work full time and live life. I refuse to give in to the pain but sometimes it wins. The pain is center in the front and wraps around the right side and my back hurts like crazy. Pain level fluctuates between 4-10. Never goes away. I need advise from people that understand. What do I eat? What do I avoid? What helps the pain? I have decided to run a 5K just to prove that the pancreas does not win. Any help out there for the newby? Thanks
Hi My name is Sheri 32 years old dealing with pancreastits since 09 and lately i keep a pain in my back but shockingly when I went ot the ER they said I m fine, but i know otherwise…I live in south florida and can not seem to find a doctor who really truely understands and sympathises. I am at work right now, getting up and down because my freaking back hurts…I have read people saying they print out papers on this so when they go to the doctor or hospital they help he/him no matter what…Where do I find these reports please.I am a single mom with no family and I mean no one…
I dont drink anymore i used to back when it started but have long since stopped, the pain use to ONLY come during a flare up but lately the past 3-4weeks it wont stop sometimes laying down and walking helps but i feel it at different intensities throughout the day… The worst is when i am sitting up all day at work…I cant take it sometimes…I do not know what to do or who to turn too… I abbrly take pain meds because One they really dont help and two they give me headache if I start taking them on a regular…I am so haooy to find others like me
My name is DebraKay, 57 years old with chronic pancreatitis caused by gallstones, pancreas divisum and a diverticulum just outside the pancreatic duct that likes to collect sludge & small stones, get inflamed and set off the pancreas. I have the boring pain of chronic pancreatitis all of the time. I use a Fentanyl pain patch, Lortab 7.5, and Gabapentin for pain relief. I take Creon, Ursodiol, Reglan, Nexium and my thyroid meds (thyroid removed). When an acute bout comes, it is severe pain that no home pain meds help.
I have a brother who has been coping with Chronic Pancreatitis for the last 10 years. I would like to read how others cope and gain insight as our whole family continues to help support and encourage him
HI everyone…my name is Carolyn…I had acute pancreatitis 5 times in 30 years but the past 10 years I have had cp and had to have ercp’s every 3 months to dilate a stricture. Please read my story and lets talk by e mail or by phone. It’s very hard knowing that this disesase and not going away. I like many of you had to go on disability because of being in so much pain. all the time. THe cost of the medicines that really work (fentanyl pops 800) is a fortune but nothing else worked and I’ve tryed almost everything.
Hope we can help one another. Carolyn
I was diagnosed with a pancreatic divisum in Sept 2009, and have been battling intermittent pancreatitis. Currently I am on TPN (total parenteral nutrition), and would be interested in meeting others that are struggling to find some degree of normalcy in their lives again re: diet, pain control, etc.
I live with chronic acute pancreatitis. The doctors do not know why I have pancreatitis. I keep having flares without any reason. I monitor my diet carefully. Very often I have gone to the hospital and they tell me that my labs say that it is not pancreatitis - only I have every symptom of it. I just want to talk to others who live with this disease to get a better understanding of it. I want to stop feeling so alone with this illness.
I have lived with chronic Pancreaitis for seven years now.For the last two years i 've lived with severe daily pain, which is often excruciting! I am on 80mg of morphine a day as well as three Diconal dailly as well as Creon 10,000, rainitadine, four 1mg pills of lorazepan. All this helps a little, but the constant pain at such a young age (34) is relly getting me down; as i have become a recluse over the last two/two & half years. I am at the end of my teather. My GP and gastroentrologist dont seem very sympathetic or bothered i 'm in agony on a daily basis. two weeks ago they gave me a temp (24hr thing) nerve block, but this did not work for me.Please help. I would like info on latest surgeries and where to go to get it done. Also contact with other suffers.
My wife was diagnosed with CP three months ago, after 2 years of running around trying to figure out why she was in so much pain. Also diagnosed with SOD after gall bladder was removed, and longer ago diagnosed with Chronic IBS. Just looking for answers, since the doctors don’t seem to have many…
I was diagnosied with chronic pancreatitis in October 2010, but had several acute attacks before then. I have a genetic mutation of Cystic fibrosis, which has likely caused my pancreatitis. I am currently exploring having a pancreatectomy and auto islet cell transplant at Cleveland Clinic. My pain is debilitating, and I am unable to work.
My name is Shelby. I am a 26 year old doctoral student who was recently diagnosed with Chronic Pancreatitis and Pancreas Divisum. I am working hard to cope and make lifestyle changes, as well as become as educated about this as possible. I have tons of questions!
Hi! I am Julie from Kansas, I have had chronic pancreatitis for 14 plus years. mine is hereditary. I have had 80% of my pancrease removed along with my splean and gallbladder and a bowel reconstruction, I think I have had alomost every test and treatment there is, my surgery was not a sucess story by far, I am 49 and now on disability with many complications from surgery and pancreatitis in general, i live in severe pain and nausea every day, i have been a member of careplace for many years but went unactive, thought it was time to get back on the wagon and see if anyone has any new miracles or if i can help anyone ! please ask any questions and i will be glad to tell you what i know. through the years i have found many little tricks that just make it a tad bit more bearable ! have a great day!
I'm Laura, age 42. It's only been a year since I was diagnosed with CP and the disease has progressed so rapidly. It's unbelievable. I can no longer eat at all and I'm sustained on 24 hour TPN. I can only consume clear liquids orally...anything else and I end up in agonizing pain and soooo sick.
I've had 7 attacks in a year's time and have been in and out of the hospital. It's always for at least 3 days and up to 2 weeks. I can always expect some time in ICU. Ain't life grand?
I'm always in pain but oftentimes, I just suffer through it rather than take the "big guns" that my doctor prescribed. I do admit to taking a lot of phenergan. I do have a PICC line, which has been a Godsend. However, because the TPN is thick and sticky, I expect to have a port by Christmas.
There is no known cause with me. I don't drink, there is no family history...I'm just a fluke. Lucky me. As for the disease advancing as rapidly as it has, there is no known reason for that either.
The particulars: My name is Jerry, I am 44 and live in Lawrence, Kansas. The specifics: I was diagnosed with CP on May 25, 2010 most likely alcoholic in nature. I lost 38 lbs in the first year but have rebounded thanks to my wife’s dietary “urgings”. I have had 3 acute attacks in that timeframe as well. I know there are people out there and probably here that are worse off than I am, even my doctor says I have a mild case. If this is mild then those with serious cases have my deepest sympathies. I also tend to ramble a lot, sorry. I am thankful for groups like this. They have helped me get to an accepting point with my illness
Angie- does your dr have you on enzymes such as Creon? They are actual pancreatic enzymes that you swallow with each meal. Taking these allows your pancreas to not have to make its own enzymes and therefore it relaxes. These AND a low fat diet are the only things that work for me. Also, as I posted just a sec ago in my intro…have your dr check you for cystic fibrosis. There are different forms out there. I recently (at 39) found out I have the form that affects my pancreas. My dr was scratching his head too until he went to a seminar on CF and decided to test me on a whim, pretty sure it’d come back negative…we were both surprised.
I am curious about everyone’s experience with getting disability based on CP. I applied 2 years and have been denied twice and am awaiting my hearing with the judge. I am nervous about it and wish that I could just tell someone and let someone see me face-to-face and show them that I cannot sustain employment no matter how “light” it may be.
Hi All ~ my name is Angie. I am 40 years old, married with 3 beautiful daughters. I had my first acute attack of pancreatitis in February of this year, a little over seven months now of non-stop pain and nausea. Origin is unknown, I have never been a drinker, had my gallbladder removed in June with no relief and autoimmune testing was all normal. The only procedure I haven’t had done at this point is an ERCP and I have chosen not to do it thus far because I am terrified of the risks and horror stories I have heard vs. the very low chance it will be of benefit. My EUS and MRCP both indicate that the ducts are okay, so I have so far chosen NOT to have the ERCP. My dr. doesn’t know what else to do, they are all just scratching their heads and medicating me. Unfortunately, I am sick ALL of the time, it is just a question of how manageable it is from one day to the next. I average at least one hospital admission per month (usually 3-5 days) and at least a couple of ER trips in between each admission. I have literally lost count since this started of how many times I have been in the hospital. I am on daily pain and nausea meds, which on a good day simply allow me to power through work until I can go home to bed. I have gone to a vegan diet (not that I can eat much of anything anyway) and do think it has helped me feel better in some ways, especially removing dairy. I lived on a liquid diet for months, then nothing but graham crackers, now I have a handful of vegan dishes that I sustain on (millet with veggies, beans, soy yogurt). I am feeling very frustrated, discouraged and hopeless at this point, wondering how in the world I am going to live with this disease for the rest of my life, be able to maintain my job, my family, my health and my sanity! Happy to find this group as a source of information and support 
I have been to Virginia Mason in Seattle in June of this year. They did an EUS and removed my gallbladder. I have been in touch with them by phone, but am extremely challenged with the logistics of getting back over there for a visit as I have no sick time left. I have had no luck finding a decent GI dr in my area, which is why I was referred there in the first place. I definitely need to find a new primary too.