Medical Questions > Conditions and Diseases > Pancreas Disorders Forum

Pancreatic Divisum and Chronic Pancreatitis (Page 1)

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.
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First Helper foustburgh
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replied June 30th, 2012
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.
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replied July 9th, 2012
pancreas divisum,
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
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replied October 29th, 2012
pancreas divisum
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.
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replied March 19th, 2013
Pancreatic divisium
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.
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replied March 27th, 2013
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.
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replied April 29th, 2013
Pancreas divisum
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 .
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replied April 30th, 2013
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
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replied May 1st, 2013
Hi k262
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 ?
Xx wing
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replied May 1st, 2013
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.

How was yours Dx?
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replied July 22nd, 2013
Pancreas Divisum
Hi all, twirlytine giving a quick update, its been a year now and have had my gallbladder removed and last week (after the removal made no odds) a nerve block put in place,,,,unfortunatley this has not worked either!! So as I am typing this I am currently at the end of an attack and feeling veryyyyy low. So.....is this it for all our lives?? The prospect of having to cope with this all the time is daunting. I have found that a hot water bottle does ease the pain a little but quite often does not touch it in severe times. I have been told by the consultant over here in the UK that they would want me to have a PPI check, which is a pressure of the pancreas but have warned me that this is a risky method to take. Has anyone else had this done?? I am also still being treated as if "it is in my head" or a "hypochondriac"! I have done all the research that I can to no avail Sad I am sending all my wishes to all on here and hope that a flicker of chance that someone has found a cure or at least a way to ease the pain that is quite honestly hard to bear. xxxxxxxxxxxxxxxxxxxxxxxxxx
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replied July 27th, 2013
Hi last month I was told I have PD. currently in pain and very low. They don't know if my upper abdominal pain is due to this. I've has numerous tests and the only thing that showed was PD. the GI has offered the stent, but reading up on this, makes me think it won't work. 2 years ago I took antidepressant s which seemed to help. I have no idea what I'm working with here and no mess help at all. Any thought s?
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replied August 3rd, 2013
Hi all,

I am a 57 years old woman from Spain, and was diagnosed with Pancreas Divisum two months ago. I started with pains, vomiting and diarrea 5 years ago, the doctor determined that my gladbladder was full of stones and removed it. But the symptoms persisted, I had one pain and vomiting episode once a week, doctors did many tests (intolereance to lacotse, celiac disease, helicobacter pylori bacteria, endoscopy, colonoscopy) and as they didn't find anything they said it was stressed. But I new that something was wrong in my body,luckily I found a new doctor who easily diagnosed with an MRI that I had pancreas divisum. He told me that the surgery was not very convenient and it was risky too, he just told me not to eat fat food any more. Then I went to a endocrinologist to learn how to eat and how to manage this illness. He prepared a non fat diet for me, and since I went on diet I had no pain or problems. I've read a lot in Internet and all the advices arrive to the same point: diet, diet and diet. Fat is not good for us, I fell healthy, I lost weight, and recovered my life. It's not so easy to do this diet in restaurants, then I just eat a salad and ask not to be seasoned, I just put salt and a little spoon of olive oil and vinegar. Life it's better for me since I am on non fat diet. I hope this is useful for you all.
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replied January 6th, 2014
Hello,
It could be helpful, if you told us what exactly you eat.
Would appreciate it very much.
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replied August 12th, 2013
Hi. I am 50 year old female. I have been experiencing severe episodes of abdominal pain and nausea for over 5 yrs. I've had my gallbladder removed and my appendix. I've been diagnosed with everything from IBS, shingles or labeled a hypochondriac. I was recently had an MRI and was diagnosed with Pancreas Divisium. After reading what every one on this forum has experienced, I actually can relate and it gives me so much clarity as to what I have been dealing with. Especially the part about not being able to drink wine. I had a glass this weekend to celebrate my cousin's birthday, and believe me I will NOT do that again. Obviously, Dr.'s are not familiar with all of the symptoms that come with PD. I talked to my liver specialist she states that since I don't show signs of pancreatis, she has NO idea why I am experiencing abdominal pain. This pain, somtimes is so unbearble that I've spent days on my couch in the fetal position crying and praying. I've tried pain meds, but to be honest they don't work. I've decided I have got to take control over my life. I know how I feel and listening to Dr.'s continuously tell me that my lab results are normal and there is no reason why I am experiencing these severe bouts of abdominal pain is making me feel like I'm going crazy and depressing me. I'm not CRAZY and my stomach is killing me. I will change my diet and see if that helps. God I hope so.
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replied September 4th, 2013
I'm 23 years old and I have been dealing with this for two years. It has wen really frustrating being a college student. I feel alienated and alone while everyone is able to party etc. I've been to multiple doctors even Mayo Clinc and they couldn't help me. I hair had a sphinctorotomy on the minor papilla and a stent placement and of course this caused pancreatitis and I was in the hospital. I'm really hopeful that this wil help becaus this has really been affecting me working out and I'm obsessed with working out. Any suggestions??
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replied September 21st, 2013
Pancreatic Divisum
I have Pancreatic Divisum. I cant stand the right side back pain from head down to waist and headaches, debilitating. That pain is worse than the pain that goes straight through me at the waist. If Im thinking the sooner I make my comfort food the sooner I start feeling better, a cup of Farina made with water and sugar to sweeten in a 4 cup pyrex microwaved. While eating the Farina hot, I rest the hot pyrex on my sternum abdomen while eating the Farina. The heat seems to help my abdomen/pancreas and the fiber keeps the gut going. Do not eat milk, meat, veges, fruit, oleo, butter, salad or anything else except hot cereal (farina, oatmeal) made with water and sugar until you are really feeling better. I cant even think of those foods without getting ill. Everything else makes the juices in your gallbladder and pancreas try to work more and seem to cause more pain. Also I use an electric heating pad for my back, head and abdomen pain. I do take aspirin or acetaminophen for the headache. If my eyesight is really bad (thinking low blood sugar) I eat candy and helps me with the headache also. I sleep a lot hoping Ill wake up all better Ha Ha!!. Drugs dont seem to help. I dont believe there is a cure and I dont think there are any meds that can regulate this debilitating disease, just simple heat, hot cereal and candy do the most for me until the next debilitating episode attack.
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replied December 22nd, 2013
I am in tears from pain as I write this. It''s 4 days until Christmas and I feel horrible. I don''t want to go to the ER and be treated as a drug seeker, but the dilaudid is not helping, I''ve only had liquids for 2 days, but I have had horrible diarrhea. I have a six year old who is so excited about Christmas and I have a bunch of presents to wrap. I don''t have time for this! I had a stent done last July, but it obviously didn''t work. I''m so tired of this!
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replied January 6th, 2014
READ IT ALL
Hello Everyone,
I am suffering daily pain caused by PANCREAS DIVISUM(HELL thing). I am from Russia and believe me doctors've never heard of it here, you were lucky being born somewhere else.

Here is what I want to say(I've read all of your replies):
1) There is no treatment, no surgeries. Think 50 times before getting ERPC(I've never had and won't do it).
2) Stop putting hot/warm stuff on your pancreas, are you trying to grow a tumor or cyst?
3) Who told you that you should eat fiber?It makes your pancreas work, leave your pancreas alone.
4) There is lack of information about this anomaly and its etimology. Scientists are too lazy to deal with the jelly pancreas.
5) Everything we can do- SUPPORT EACH OTHER, STAY CLOSE,SHARE OUR TIPS(I am pretty sure everyone has them)and ATTRACT SCIENTISTS ATTENTION. Your single comments are not really helpful, guys,I am sorry.
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replied January 6th, 2014
Oh, they didn't let me write the link of my story and tips. Find me in Internet,I have same nickname.
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replied June 27th, 2014
My family is dealing with similar issues. To the original poster: South Carolina is an area that I'm currently investigating for geneological reasons. I've discovered that the Cherokee and other tribes interbred with gypsies that may carry a recessive gene which can cause auto immune disorders/inflammatory disorders # familial mediterranean fever # amyloidosis# Bechets. These diseases often mimick fibromyalgia, ms, and other disorders. I have "possible pancreas divism" and striated scarring in my pancreas and bile duct which are "not necessarily diagnostic of chronic pancreatitis" which was found only after I forced the clinic to do a CT scan of my pancreas. I didn't even know that much until I read my medical records on the long drive down to the Mayo(I had to push for a referral - KNOW YOUR RIGHTS!). These disorders affect many parts of the body;.it's systems and organs. A medication called colchichine, an extract made from crocuses may be helpful in diagnosing the condition where expensive genetic testing may not. # melungeon# american gypsies# black dutch# black finn# portuguese# Cook Family # Dawes Rolls
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replied June 27th, 2014
To those with possible Cherokee/Native/Black Dutch/gypsy/"portuguese" descent: with only one parent having one of these "rare" disease causing genetic mutations (not all have been found or documented which is why expensive genetic testing still may not be helpful), there is about a 1 in 4 chance of having this disease. In certain areas of the nation - those that can trace their families back to the first American Settlers and Buffalo Bill - you may have the recessives on both sides and not know it. That would give you up to about a 75% chance of having a disorder like fmf - familial mediterranean fever.
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