I am a 33 year old female and was perfectly healthy with never being sick other than something as minor as a cold or maybe the flu once or twice until 2 months after giving birth to my 3rd son 4 years ago. I woke up one night and began to nurse my baby when all of a sudden I had a sharp pain in my upper abdomen that was so intense I felt as if I would pass out. I put the baby down in fear of dropping him and crawled to the bathtub and started a bath (when I am in pain I take a bath???) Not five minutes later I could not bear the pain any longer and called for my husband to help. He woke up and came to help. He had to pick me up to get me out of the tub. He rushed me to the hospital ER. After a long night in the ER it was determined that I had gall stones (and not a diseased gall bladder) and was taken into surgery that day to have my gall bladder removed. The surgery was done laparoscopically and there were no problems. I thought that was the end of it. Then 3 months later I had a migraine so severe that I had to go back to the ER. I was treated with pain meds and sent home. Around 12 hours later the migraine had gotten considerably worse and I was vomiting so I returned to the ER. They did blood tests and saw that my lipase levels were near 2000 with the normal being 40. Though they didn't know the cause they admitted for 5 days treating the pain and giving me IV fluids until my lipase level began to reach a normal range. After that I began seeing a gastroenterologist. He said there was nothing wrong, it was an unexplained spike in my lipase level and to come back in 3 months to have my levels checked again. Then every few weeks I would have severe abdominal pain with vomiting. I visited the ER several times and was admitted some times and some times sent home depending on my lipase levels. I lived in South Carolina where health care is not necessarily the greatest. I saw several doctors during those 2 1/2 years with no explanation of the pain in elevated lipase levels. They began to treat me as if I was a burden and continued to tell me there was nothing wrong. I felt like they saw me as a drug seeker and they were not helping so I stopped trying to get answers because I could not stand the way the doctors made me feel.
In 2010 we moved to Pittsburgh, PA and the painful episodes continued. After living here for about 2 months I was struggling with the pain one evening and my husband did some research on health care here. UPMC hospitals here in Pittsburgh are rated 11th overall in the nation and 13th in gastroenterology. He suggested we try a visit to the ER here to see if they could try to find out what the problem was. My lipase levels were elevated to around 400 and they admitted me. I had a CT scan and during my stay was told that it appeared I might have pancreatic divisum. I was referred to one of THE BEST liver specialists, with not so good people skills. He confirmed that I do have pancreatic divisum and wanted to do an ERCP. He performed sphincterotomy and placed a stint in my pancreas. I was hospitalized for 11 days following the procedure because I developed pancreatitis. I felt fine for nearly 8 months then painful episodes began again. The procedure was repeated then 4 weeks later again to remove the second stint, but this time with no relief.
Now I frequently have severe pain and try to treat with advil and liquid diet. If the pain is unbearable I will go to the ER and go through the routine treatment of pancreatitis. Some doctors completely understand the condition and are sympathetic to how painful it is. Others make me feel, again like I am only there to get pain meds. My liver specialist is very good, but offers me little solution to how to treat an episode and he is usually booked 6 months out so it does not do any good for me to try and get an appointment when I am in pain. I absolutely HATE going to the ER and am at my wits end. The frequency and intensity of the attacks are getting worse. I have tried to see a different gastroenterologist that is maybe more accessible, but because I am a patient of my current doctor and he is a part of UPMC they will not make me an appointment with a different one. I guess what I am asking is if there is anyone else that has a similar situation what you do for relief. I am missing out on so much because my activities with my children are limited when I am in pain for weeks at a time. My kids are so used to this that my 4 year old asks me on a daily basis how my belly feels.
I feel your pain (literally) as it took me quite a while to get a dx too. Being looked at as a drug seeker when you feel like you might be dying is more than frustrating. I also have pancreas divisum and my GI doc thinks it could've contributed to my chronic pancreatitis but the real reason was going for 2 years passing gallstones while docs refused to take my pain seriously. If you are not comfortable with your gastro doc, then you do need to push for a new one. If they won't schedule you an appointment with a different one, either discuss this with your primary care doc or go to a Hospital Patient Rep for help. Find a gastro doc that is experienced with pancreas problems. They don't all present as text book cases. The pain is standard but the lab results can be all over the place. Make sure you are following a very-low-fat diet, stay away from most meat & fried foods. No alcohol or smoking. Ask your gastro doc about taking pancreas enzymes. I'm surprised they do not already have you on them, perhaps they do? If so, always take them 20-30 min. before meals, even snacks. It will take some stress away from pancreas. You might also want to get a referral to a pain management doc. My gastro doc sent me to one for constant pain meds. I use a fentanyl pain patch for constant level of meds that helps deal with the chronic searing pain that goes from left middle to the back. I also have meds for breakthrough. Even these do not take care of full blown pancreas attack. I try to suffer through them as it is usually more than I can bear to go to ER and risk getting the doc who is unfamiliar with pancreatitis and lets me sit there for hours before giving something like dilaudid. Usually just as painful to stay home, curled in fetal position waiting for it to pass. But... if fever & chills come, time to go to ER regardless. Good luck -- sorry we are having to share this experience.
Hi to both of you, I have been looking for a forum for my condition which is pancreas divisum, I actually live in the uk and been told several times it was stress and eventually "the pain is in your head" I ended up seeking private help in Malta where i have family, my gallbladder is only working 10 percent and now discovered back in england that i have this other condition, I am not really getting any care, I go through the same as you both, end up sleeping on the couch in absolute agony and refuse to go to A & E because I am also treated like a drug seeker,,,makes me sooooooooooo angry. I am now actually very depressed, in between jobs as no one will take me on with ongoing medical issues. I still await an ERCP which was agreed i could do under general, i dont tolerate sedation at all!! its been two months now and still no appointment, im at the end of my wits and cry constantly. Is it worth having stents put in?? I have heard a few say that it doesnt actually work...but then what,,,what happens to us then...do we suffer forever..that i dont think i could stand. I wish you both goodluck and hope that any news is good news. take care from me in the UK. Tina x
Foustburg- I also became symptomatic with pancreas divisum 5 years ago after giving birth to my 4th child. When she was 6 weeks old I had my gallbladder removed. Finally, after much pain and frustration I was correctly diagnosed with pancreas divisum and have been stented twice by a surgeon at Cedars Sinai in Los Angeles. But my lipase and amylase are always normal so when I go to the ER in severe pain with nausea, they treat me like a drug seeker too. Something needs to be done. I have already filed a complaint with Kaiser, but I need to go further. I am tired of the humiliation and treatment I receive in the ER. It's sad as my daughter says, "there's where mommy lives" when we pass a Kaiser hospital. I too sit in a hot bath now to help relieve the pain. My quality of life has decreased and I suffer from depression. I just want to be healed, I can't keep living with the pain.
I am so glad I found this site. I started suffering from pain with pancreatic divisium in 1993. I am exhausted with pain. When I was first diagnosed I was told surgery was very risky and that was last resort. I was put on xanax to relax spasms. Tht worked for years but in the last month I have pain everytime I eat. I m going to try to fnd a gastro tht specializes in pancreatic divisium. I am miserable. Especially after I eat. No one understands how painful ths is. I would liketo keep in touch with others with this condition and keep me updated on progress and if anyone finds anything that helps the pain, please let me know.
I got acute pancreatitis in 2006 and was in the hospital for 3 weeks. Upon being released I was under the care of a gastroenterologist, I saw him for 2 years. I continued to have bouts of pancreatitis and every time he would tell me to go on a soft diet until it subsisted. He never did any further tests. Finally being fed up with feeling sick all the time I got a second opinion. This doctor sent me to Indianapolis he did a EAU first and found pancreatic divisium and a psydocyst. He then did a ERCP and found all the ducts were blocked and put in a shunt to drain the cyst but it didn't work. I was informed I would need a distal pancreaectomy also my gallbladder removed and might loose my spleen. I had the surgery and they were able to save my spleen. However I still suffer from chronic pancreatitis. I am insulin dependant and when I saw the doctor in Indy he prescribed Creon and told me my entire pancreas was diseased. Life sometimes sucks. I suffer from depression which I've heard is common for diabetics.
Hi everyone I to have pancreas divisum and can feel and relate to all your story's . I have had it for 10 years same story with docs and hospital thinking it was all in my head and I was a drug seeker !!!! I am currently under a pancrease specialist privately his advise to me are when the attact comes drink nothing but water this will calm the attact down and it should not last as long giving your pancrease a holiday I have been taken 12 tramadol a day for pain along with 8-10 paracetamol ,diclophenic x8 anti inflammatory drug also amitriptline x2 each night also digestive emzines every time I eat this is just for the daily pain. When I am under an attack which just now are around every 6-7 days I have morphine at home to help this medication is a lot but then so is the pain I hope this might give some of you some idear of how much medication you should be taken and will push your doctors for it u need it !!!!!!!! Just to get through a day .
Ive had pain 5 yrs, first episode lipase was dbl. Ever since, its just under 10 pts above norm. My pain is a quick stabbing/squeezing. In my flares I could have them hourly or just 3 of them the whole day. Sometimes my pain is on the right.
Ive had 1 ct, 2 mrcp, 5 eus- all totally norm, no changes in 4.5 yrs. With that, drs say its not my panc.
I do have an INCOMPLETE divisum, but drs say its mild and wouldnt cause this.
Had a hida, showed my gb operating at 28 vs 35-but I believe gallbladder pain is only on the right where mine is mainly left, though lately a lot on my right too.
Not sure what to think. Is it my pancreas? Would something of shown on my eus by now? Ive been seen by some of the best drs in california.
Im very hyper about this as my dad died of pan cancer
I listen to doctors telling me i had ibs for ten years
before i decided to go private. I am not saying dont listen to them
What i am saying are you seeing a specialist ? Not a gp
Or a gastro doctor i have had no sucess with these.
Also pd is rare so how would your doctor be able to tell
You what pain you should or should not be in.
I get pain left right middle, along with other symptoms
If your ct showed a divisum of any kind then your pancreas
Has not formed properly what other symptoms do you have ?
I've seen 6 GI, even Stanford's pancreas dept. The only one that says cp is likely is the non expert and he says it won't progress which I know isn't the case
The reason drs say its not my panc is because my pain apparently isn't typical and every rus in 4.5 yrs is normal. No other symptoms really like no nausea but I do get not formed stools often and pain after wine. It's all that makes sense to me as I don't think gallbladder disease can cause elevation and left sides pain.