Hi everyone. A reader, CB wrote to us recently and asked us to post her story:
“I have been suffering with pain since Thanksgiving 2009. Actually about a month or two before but not as severe until Thanksgiving. I am not an alcoholic and rarely drink. On Thanksgiving I was admitted into our local hospital. I was put on an IV and pain killers. I was told that I had gallstones. Two days later they removed my gallbladder and appendix and fixed a small hernia. I continued to have pain on my left side right below my ribs which radiated to my back. I continued to go to my family doctor and advised her of this. She stated that it would take time to recover from this surgery. I continued to have pain and she took a blood test which showed my white blood cells were elevated, so assumed that the pain was due to an infection. I was treated with antibiotics and told that there was a pocket of fluid by the incision from the hernia surgery. When the pocket of fluid wasn’t reduced after the antibiotic treatment, the doctor tried to drain the pocket by reopening my belly button. Even after that I continued to have pain. Finally after almost 2 months after my surgery, I was sent to a gastrinologist. At first all he did was give me more pain killers and review blood tests. He advised me that my pancreas and liver levels were high. Which for my pancreas was told they should be between 0 - 300 and were coming back at the lowest 900. I was then told to go on a low fat diet. So I did, but I was still having pain. I eventually went on a completely fat free diet. I still continued to have pain. Another visit and the doctor finally decided to schedule some tests. The first test was an MR/CP. The radiologist said that it showed nothing. Thank God the doctor decided to review the scan himself. He advised that he seen a small blockage in the tail end of my Pancreas. He then scheduled me an ER/CP.
After that test he verified that there was a blockage. I was then referred to a University for an EUS. At that time a biopsy was taken. I was informed that the test results came back inconclusive. I was then referred to a surgeon. On March 8th 2010 I went in for surgery. The surgeon was almost positive that I had cancer. 75% of my pancreas, my spleen, 22 lymph nodes, a stomach biopsy and a wedge resection of my bowel was performed.
(It turned out to be a cyst in my pancreas which was not cancerous) I was in the hospital for 6 days. My recovery started out good. I had a JP tube in to get the excess fluids out of me. After approximately 2 weeks the JP tube was removed. On that day, I went to our local ER in so much pain, I could barely breathe or move. They sent me back to the University Hospital who performed the procedure. They ran several tests and came up with no cause.
I was kept in the hospital for 2 days and when released was advised that I needed to go back on a fat free diet. The day after being released I went back to the gastronologist for his opinion and assistance. At that time he referred me back to the University ER. It has been 8 days now with only minor pain. Today however the pain was back. The only time I have had complete relief is when I have been on a complete liquid diet. I know this is not healthy by any means. I have lost almost 40lbs since the procedure that was done on March 8th. I am absolutely terrified that I will die as the doctors seem not to be able to do anything except give me pain medication, which is beginning not to work anymore. I need help and feel I have nowhere to turn. Every doctor I see continues to refer me back to the Hospital that performed the procedure. Even my insurance company which assigned me a case manager is concerned. I have two children and am so worried. I’m afraid to sleep or eat anymore. I don’t know what to do or where to turn.”
As a postscript to CB’s original note:
“I have an appointment on April 15th with the surgeon and will press her for answers as to the diagnosis of my condition and what avenue I should take to finally be done with this extreme pain. I will advise you of what I find out. Hopefully my information and story will help someone out that is experiancing the same issues. Thank you for your research and your support. As bad as this may sound, it’s nice to know I’m not alone in my suffering.“
We’d love to hear from any others who have had similar experiences to CB (and I’m sure CB would love to hear from you as well!).
I’m sure all of us wish CB all the very best.
Kind regards
Jenny
I have a cyst in the middle of my pancreas. One doctor who did the fine needle aspiration test said I needed to have surgery to remove half of my pancreas. No cancer was detected from the test. My gastroenterologist said to wait a year to see if it would grow. I had an MRI recently and the cyst did not grow. I dont have any pain right now. Only my stool is soft most of the time and some diarrhea. My diet consists of chicken mostly, not much beef or pork. And I stopped alcohol completely. As of now I am doing fine and I thank God I did not go for the surgery.
Raymond O
Comment by sankey — April 13, 2010 @ 5:54 pm
hi
i’m not much of a writer I can do this much better by voice. My 43 year old son has been in and out of the hospital since dec 2008,
It is a long drawn out horra movie. and i hope his story ends well. in a week and ahalf he will be going to cedars of sinie to have most of his pancreas taken off. his duck is closed. I am not sure if this could have been avoided. he had two cists and it took the other hospital months and months to recomend the cists to be drains.
if u have skype please give me your number.
thsi story his horrific.
P Thompson
Comment by sankey — April 13, 2010 @ 5:55 pm
Dear CB, I have chronic pancreatitis but it took more than a year and a half to diagnose.I too felt scared and frustated. I am a mother of two so I share your concerns.I was lucky in the fact that I found a very reliable gastro specialists fairly early. I too am on very low fat diet but continue to have flair ups every so often. I am not a drinker or have I ever done drugs.My doctor says some cases can not be explained. I hope you continue on the road to recovery but it is a slow process so dont be discouraged. Good luck! K in Ohio
Comment by sankey — April 13, 2010 @ 5:56 pm
Dear CB,
So sorry to hear of your ordeal….It sounds as if you have only tried traditional western medicine….Have you tried acupuncture with tea prescribed by the acupuncturist? Also Reiki healing? Prior to canceling unnecessary gall bladder surgery and much pain, (my pancreatitis was also caused by a blockage, due to an injury) I have remained out of the hospital for two years, and yes pain free, by having weekly, monthly, occasional acupuncture appointments.
Good Luck.
CB
Comment by sankey — April 13, 2010 @ 5:56 pm
Bill…It is really sad how messed up the medical community can be. I was treated for a year , inclucing 3 ERCP’s, various hospitalizations, lab tests, the whole thing. It turns out that what was wrong was the diagnosis. I did not have chronic pancreatitis. I was on opiates for severe arthritis of the spine and all of my sx’s were due to my body’s reaction to the opiates. It took finding another gastroenterologist and working with him over a period of time so that he could “undo” his colleagues bad judgement. Doctors do not like to tell you that another doctor was wrong, regardless of the pain and inconvenience to you. Poor CB…to be told so positively that you have Cancer. It could well be at this point that he/she too is suffering, at least in part, from narcotic side effects.
I found your service very helpful when I thought I had chronic pancreatits. Keep up the good work and with any luck there will be more folks who are “cured” by getting rid of the wrong diagnosis.
Sincerely,
G Flurer
Comment by sankey — April 13, 2010 @ 5:58 pm
Hi There, I was just diagnosed with acute pancreatitis 3 weeks ago. I spent 2 weeks in the hospital on only liquids and lipids thru my iv. I had many tests, endoscopy, Dye tests, MRI, etc. I keep complaining to them that I ALSO have pain on my right side just under ribcage that radiates to the back, but they dont want to listen. Im not sure what to do next. I am home and trying to eat a low fat diet, but most everything hurts. When I was in my last 3 days at the hospital they were bringing up meatloaf, hamburger, spaghetti with meat and me not knowing better ate a few bits and was in chronic pain. Does one hand not know what the other is doing? I am afraid to eat and not sure what I have to look forward to with this terrible illness. So far yogurt, skinless chicken, fruit and potatoes I can manage. If anyone has any ideas on the right ribcage pain radiating thru my back, please blog me. I also have had digenerative disc disease for 5years from a ski accident, but dont see how that can be related. Please help, I am hungry!
Comment by Naomi — April 14, 2010 @ 11:44 pm
Has she been tested for Hereditary Pancreatitis? I think the genetic test should be done even if there are no close relatives with the disorder. My grandaughter has the genetic mutation they did not test for until a last resort because we did not know of any family with it. Please get tested, she has all the symptoms.
PS: One of the largest problems with Hereditary Pancreatitis is delayed diagnosis.
L
Comment by sankey — April 15, 2010 @ 2:59 pm
Hello, all. My story starts when I got pregnant for my son in 2004. I was in my 2nd trimester and was so ill I had to be admitted to the local hospital. I spent 7 days there going through many tests. Then I had no problems until I got pregnant with my daughter in 2006. I spent 10 days at the hospital that time going through the exact same tests I expierenced the first time. Both instances I was told that I had hyperemesis. (It’s like morning sickness x 10.) Then every year since then I continued to be ill with no more information than I started with. The “health professionals” that I deal with all say the same thing, recurring pancreatitis. I do not drink alchohol, and I have become much more strict with my diet. I was working full time but have had to cut back my hours due to fact that I have a difficult time getting going in the morning. I have spent nearly every day being sick since 2-1-10. I am at the point where it doesn’t just beat me down physically, but it is wearing me down emotionally as well. I feel like there are no answers…
Comment by s. bylsma — April 26, 2010 @ 4:36 am
After days in the hospital and severe pain, my mother has recently been diagnosed with acute pancreatitis. Her generaly physician claims it was a stomach virus….ha! Thank we pushed for further test and evaluation while she was in the hospital. I am taking her to a GI doctor on Friday with hopes of getting some answers. She is still not able to eat hadly anything. Liquid diet works best at this point. I found your site very interesting and with researching everything about pancreatitis that I could find on the internet, I am wondering if after 4 years of being in pain myself, seeing multiple doctor’s and going through several tests, scans, etc. if my pain is coming from my pancreas and not from the liver hemangiomas and liver cysts that they discovered when I first sought help for my pain. My pain is in the same area as my mother’s and sounds very familiar to all the information I have been reading about pancreatitis. Once I get my mother straightened out, I intend to see someone about my own pancreas. Any information you can give me about a diet plan, foods to avoid (other than the fat-free stuff of course and limiting sugars) would be very helpful for both myself and my mother. Thanks, Barbara in Maryland
Comment by Barbara — April 29, 2010 @ 3:26 am
I have had pain for over a year, the first diagnosis was gallbladder, so it was removed, then the pain continued and then it was a stone lodged in a duct, then a mri showed nothing there, further test with a specialist in gastro disease resulted in nothing showing, then another visit to the doctor and he says it could be diverticulitis, so more pain pills, now what route do I go for?
Comment by eugene chapman — May 6, 2010 @ 1:39 am
Hello everyone this is my first time doing something like this and talking about my medical problems. I am a 26 years old suffering from chronic pancretitus every year 2 times a year i am hospitalized and put on meds and a liquid diet. it all started when I was about 13 years old. they have done genteic testing which came back normal and a ercp in which i was informed that I have an abnormal pancreas. everyday I am in pain I maybe get like a month off without any flares, but it has now turned into a form of diabetes because my pancreas does not want to work correctly. I truelly am scared and feel like im sick half of my life. Does it ever get better, Im so tired of not having any answers, I am in the best of care with the doctors and am part of their study because I am one of their youngest patients. It nice to know that im not alone and the only person out there with this condition.
Comment by Mandy — May 9, 2010 @ 8:58 am
I was in so much pain on Saturday night I had my daughter get me to the ER, where a nurse diagnosed me with Pancreatitis, I am so grateful to him as everyone else thought I was crazy. I was given IV theraphy over the weekend and was told today my levels are back to normal range, but I am still weak and hurts when I take a deep breath. I just want to get it fixed and quit hurting.
Comment by in pain in ga — May 12, 2010 @ 5:04 am