I've had pancreatitis several times in the last 5 years and bile duct pain previously. Recently I've had three different CT Scans and all three show dual duct dilation (both pancreas duct and bile duct) but my blood work was normal not showing pancreatitis. Of course I'm concerned I have dual duct dilation that seems to be getting a bit worse with each CT Scan, however my doctors say they'll just keep an eye on it, they don't know why. I get frequent attacks that aren't all out pancreatitis attacks, but I'm worried and feel like I'm just sitting around waiting for the pancreatic cancer diagnosis due to the very high percentage of dual duct dilation resulting in pancreatic cancer. The last full on attack I had I was taken to ER. My lipase etc. we're in normal range, just blood in urine so they gave me meds and sent me home. Anyone else have this issue? Thank you
Your anxiety is understandable. Bloods can be normal with Chronic Pancreatitis
and whilst you may have been diagnosed with Acute initially it can progress to chronic.
Is your doc a Gastroenterologist who specialises in the Pancreas? If yours is not ask for a referral to one asap. If your doc is a gastroenterologist then ask for a referral to another gastro/pancreas person for a second opinion. If you're losing faith in your current doc the move could be permanent.
I think it's usual to find out why the ducts are dilated rather than just watch it happen. Everything to do with the Pancreas is tricky but it's your body and wanting to find out what's going on is normal. Anxiety only makes things worse.
I'm surprised to read how quickly your were dismissed from the ER, obviously no gastro on duty in the ER that day. If you present again ask to see a gastro. Good luck..
Thank you for responding! I get ignored a lot lately regarding my pancreas. I also have systemic lupus and the GI hears that and I see his blank face. Not knowing what to do or say. Other than "maybe your lupus is causing it, take it easy and clear liquids for awhile" now that we have access to all our test results I read them all. Abnormal, abnormal, abnormal. I'm going to take your advice and see another GI. My current GI scheduled me for my next CT Scan in December to "keep an eye on that duct dilation"
I think it's time to advocate for myself and get answers. First, why are both ducts dilated more and more?
I swear, you almost have to get your specialist on a slow day to get proper advice.
Yes, unless lipase is high, no hospital stay. Just saline for dehydration and pain medicine that wears off once you're home. Very frustrating. Thank you for getting me motivated to do something.
This sounds all too familiar, I was having major pain that sent me to the ER in April. But unfortunately for me I had just had a hysterectomy 2 weeks before so they were only looking for post-op complications and when that was cleared they became uninterested. They did a ct scan and it showed that my pancreas and common bile ducts were both dilated. That is exactly where the pain was. They recommended that I get an ultrasound in an non emergency setting. I went to my family Dr who set me for one, that came back showing no stones, main bile duct still dilated but they were not able to see the pancreas duct because of gas obstructing that part, so I still don't know if it's dilated or what's happening. I have yet to see a gastroenterologist. No ones seems concerned so I don't know if I should be either. But I am still getting pain, it radiates to my back, I know it's my pancreas but no one will do anything about it... I am 48 yrs old. I don't drink nor smoke. This is all so frustrating.
Boy tell me about it! I'm sorry you're in the same boat. I don't drink, no known reason over the years for pancreatitis. But its gotten worse, and the first consultation at the hospital this lady attack, after the first CT Scan they did in that stay, the GI specialist called in by the hospital told me they're both dilated and there "seems" to be a mass there at the pancreas duct. We must perform an EUS in two weeks. I get out of hospital, have after hospital appointment with a new PCP who scoots chair up to me and says not to worry, their pancreatic cancer specialists are the best....huh??? Cancer specialist?? What's that all about?!!! So four weeks after CT scan I finally have EUS. Specialist says, all clear! Mass is not there but ducts dilated. Sign here....Bye!
I go BACK to PCP, to ask what I'm supposed to do now? He's done a 180° turn and treats me like "what you here for? You're fine. Bye!"
So I'm adrift, two attacks later and ducts still dilated, a bit more. But nothing planned, ERCP too risky (caused pancreatitis one time on previous ERCP).
So I'm on my own. GI specialist doesn't know why, says to check back in, in 6 months.
I got a nutritionist on my own. And I'm trying to research and eat right, etc. but it is pretty stressful.
I have systemic lupus, which attacks your internal organs. But I haven't found a doctor who knows how to help interpret my future, what my odds are at getting cancer since dual duct dilation usually ends up in cancer 90+% of the time.
I've had to just stop googling and have begun coming to the forums because all of you experience this stuff and know so much more. I've learned more in one night's reading of a forum than $20,000 of hospitalization and tests (after insurance).
Thank you for responding. I feel bad for you but I also feel I'm not alone.
It's crazy how we're treated (at least how I'm treated)
How I do everything I'm told to do and when I continue to get worse, i begin the process of "so you don't drink huh?" "plus dismissive of the pain, until blood results come back or CT Scan comes back.
I'm a big nobody that no one knows what to do with.
Just admit it. Maybe give me some suggestions on other specialists I can see. But don't just forget me. Help me.
Hi again Emusedone I just read your response to Crazycatperson and feel so bad for both of you.
Where are you? Sometimes it's just a matter of being referred to the right place. I lucked out perhaps when I was referred to one of our major teaching hospitals here in Melbourne (Australia) by my GP and then jagged a gastroenterologist who'd just spent 8 years studying the pancreas in Cambridge. He's great I feel so fortunate and feel sure I'd not have done better had I gone searching as a private patient.
I didn't even know I had a problem with my pancreas really, I had a few
gastric issues and a bit of unusual pain and had been admitted to hospital for a few days (they were looking at my kidneys duh). I then asked my GP to order an abdo CT is all. It showed the calcifications on my pancreas. I guess that's the key although I'm now seeing other specialists at that hospital regarding my other disease and they're all trying to find out what's going on with some new symptoms I have. I'm pretty chuffed all round currently.
Some doctors really care and some just want an easy life. My other disease is complex and rare and I've had doctor's tell me they just want an uncomplicated practice and won't take me on so I know how it feels to be dismissed.
Don't give up on yourself, the doc's you've seen don't walk in your shoes and won't be impactedo one iota if you become despondent. Your life is valuable and you deserve to be as well as you can be so push on.
To help with the next phase, (after you've sacked your new GP and found a good one), get a copy of the hospital notes/tests etc and scans, take a deep breath and then start again. And stay in touch so we know how you're doing.
I am in the SAME FREAKING BOAT...
let me know how you are - I see the GI guy on Tuesday and to be honest - I just can't get my head around how bad I feel. I have bilateral kidney stones which suck so bad, I truly didn't expect to now need to see another specialist. Dilation of the pancreatic and common bile duct.
WTF - wasn't going to go until I went all Google MD on this topic.
Isn't it crazy. I STILL haven't gotten an appointment with anyone. Two months ago I had a kidney stone. The CT Scan still shows dilated pancreas and bile duct. I feel like I'm just supposed to sit here and wait until it's cancer then they'll see me again. All I ask is, please tell me WHY my ducts are dilated. Why I have frequent attacks.
Having this dilation problem is scary as you know and Googling "double duct dilation " or "pancreatic duct dilated" you find out just how scary.
I hope for both of us someone takes a serious interest in determining why and helping us.
YES it is crazy. I'm still in the same boat. I finally went to see my pcp Dr last week and insisted that he sends me to a gastro Dr. I've have enough. I NEED to know why they are both dilated so I want them to do the ultrasound where they put down your throat, forget the name of it. I get on and off pain, sometimes it wake me in the middle of the night, sometimes I ACTUALLY throw up. The only thing that I can think that it may be is perhaps stones passing through the ducts or sludge? I also have been diagnosed with gastritis in the past, so maybe that causes dilation? I just hope whatever it is it's not cancer.
Oh, I have another plain ultrasound booked for this Thurs. Don't know when I'm going to get into seeing the gastro doc yet.
GURL - I am here in your boat. I have a friend who I just found out is a GI dr - so I am waiting for him to call me or text me. I will let you know what he says - I feel like you have to have someone give half a bleep and shoot it straight. I also have the GI appt in the morning so I will certainly let you know what they say. I feel I will need that tube test deal, which I am sure will be scheduled sometime before my kids go to college. UGH. I had a friend's husband look over my CT results which didn't make me feel much better, he said the duct dilation issue takes presedence over the kidneys right now - so if it helps, we probably aren't insane, there is something needing attention.
I just want to feel better and get answers. 
let us know how the U/S goes - that sounds just like my puke stories. I'll have to jump up from bed sometimes - it makes NO sense.
How did your GI appointment go?
I finally recieved a call today for an appointment for a GI specialist set for Aug 24th. Hopefully I will get some answers quick.
guys - no new news but will be doing the MCRP or whatnot - the next step.
That is all I can urge anyone to do, TAKE that next step. If your doctor isn't hearing you - demand that you get the next step which is most likely that same test for you all. Can't help but wonder if never a kidney stone rearing it's bitchy head, would I EVER have gone to a GI guy? No hell no, we just assume all is well if we are supposed to be well. I am sure my soultion will be some random gall stone or a million other things that could be causing a plethora of painful and annoying symptoms. They aren't always cancer, but how many read posts and secretly feel deep down that it they know something isn't right... if that something IS cancer?? Don't wait until you wake up with yellow eyeballs.
Just go - let me be your lesson learned, I had these symptoms since FEB but a kidney stone was the only thing that took me to the tube - and I had both ducts dilated so HELLO of course we need to get to the bottom of it.
I see the urologist on Friday - I will be keeping you all updated and in my heart - I get it. We know we should not feel this way, and we will all feel better just getting the facts Jack. 
Chicken
I found another thread somewhere - I will try to post it. Makes me sad how many people have strange and unexplainable symptoms and never ever get answers. So I am on a mission thanks to my damn kidney snafu
Today I go to the primary AGAIN for a whole fasting blood work deal - serioulsy feel like it is a fire drill at this point and nothing makes sense. The kideny stones seem to be what is front and center for the culprit but these GI issues have been going on since Feb so my suspicion is that the real a-hole in my body will need to step up. I see the urologist on friday only because my husband kept calling and damanding I get seen. My CT looked like this:
FINDINGS:
Previously there was a small pleural based nodular density in the right lower lobe which is no longer identified. The visualized lung bases are
clear on this current examination. The liver enhances homogeneously without focal lesion. There does however appear to be mild dilatation
of the common bile duct and common hepatic duct and to a lesser extent the intrahepatic bile ducts mildly increased in degree compared to the previous examination with a maximum transverse dimension of the common bile duct measuring 9 mm in dimension. Ir is also mild prominence of
the main pancreatic duct. Therefore, a distal common duct stone,
stricture, or ampullary lesion cannot be excluded. The spleen,
pancreas, and both kidneys enhance homogeneously without focal lesion. Small nonobstructing bilateral renal parenchymal calculi are seen the largest of which measures 3 mm in dimension. These were not clearly present on the prior exam. No calcified ureteral stone or ureteral
obstruction is identified. No abdominal or pelvic adenopathy is seen.
No abdominal or pelvic fluid collection is noted. Suggestion of mild
diffuse thickening of the wall of the urinary bladder is noted and
cystitis cannot be excluded. The visualized bony structures are intact.
IMPRESSION:
A previously noted nodular density in the right lower lobe is no longer identified. Mild prominence in transverse dimension of the common bile duct, common hepatic duct, and intrahepatic bile ducts is seen slightly increased in degree compared to the prior exam. There is also mild prominence of the main pancreatic duct. Therefore, a distal common duct stone, stricture, or ampullary lesion cannot be excluded. Nephro
lithiasis is seen without ureteral calculus or ureteral obstruction. No
focal renal parenchymal lesion is identified. There does however appear to be suggestion of mild diffuse thickening of the wall of the urinary bladder and cystitis cannot be excluded.
SO - basically they could have abbreviated the findings as WTF yo.
I have had a hysterectomy so the only pelvic part that didn't take a beating was my uterus which obviously has left the building.
I need to list out all the weird body signals but nothing makes sense right now. I serioulsy have no fear - not afraid of cancer or anything else - so I am neither making more or less of this than what it is, it is not normal by any means and I am ready for an answer. I serioulsy love that I thought all my vomiting and shaking and distorted vision was because of negative energy, which hey. maybe it was. But my blood sugar was high on my bloodwork on Friday and lo and behold the time I was shaking at my dr's office I just looked and it was LOW. So blood sugar issues can't be ignored, maybe. or not...
Feels ridiculous and my usual response would be to say - it is a fluke.
Anyway - just hoping everyone is feeling better. I have an ADORABLE little baby bump so I am joking that I am about to give birth to a kidney stone or maybe have a c-section and will get my gall bladder removed.
Hope it is a boy. HAHAHA
Chicken
Wow Chicken that's quite a long report. Looks like you have a very good radiologist.
I also have thickening of the bladder wall but it doesn't cause any problems so hopefully that is a common find.
The stone sounds like they are small, I also have a small one in my left kidney, heck, who knows, perhaps it's been pee'd out by now, I haven't had any pain from it. Hopefully yours won't cause too much pain.
The increased dilation would freak me out as well. Hopefully they will get to the bottom of this, have you seen the Dr since receiving this report? if so what did he say about it? I have read that sometimes sludge can cause the dilation, hopefully this is the case.
Now back to the dilation, I have been doing a lot of sluething and it appears that with the increase of ct's in hospitals now there are more people that are seen to have dilated ducts for completely benign reasons so hopefully we fit in that catagory. lol.
As for symptoms, I am not without them but they aren't nearly as intense as what they were that sent me to the ER in April. I get pain under in the mid ab center and a little to the left of that, it's not a sharp pain, more of a dull ache. At night when I am sleeping is the worst, the pain sometimes moves to he back. Also the nausea and random throwing up while sleeping. Once I am awake I'm mainly fine, except for if I am hungry it hurts and after I eat, it's weird. My gut feeling is that it's not cancer so that leaves me in peace.
I hope you get answers really soon. I'm thinking of you.
emusedone, how are you doing? Any appointments yet? I went into my GP last Fri and insisted that he sent me to a specialist ASAP, he listened to me and I recieved a call on Tues for the appointment in 2 weeks. Perhaps you can do the same. There is no reason that we should have to wait for so long.
So weird - that is me too - if I am hungry and I miss the window- total barf, but there is not much rhyme or reason to my gut these days. I am not fearful at all of cancer, if it is - bring it, if it isn't, I have learned what was intended for me to learn with this whole lesson. It truly has opened my eyes to what others go through every single day. The not knowing and not wanting to either sound ridiculous or burden those around us is toxic. I am a highly trained actor (ok marginally trained) and even I can't do it another minute.
I finally see what the hell makes us so sick, we hold in our deepest fear and downplay our symptoms, it is no wonder cancer is this wicked curse that it seems to be. We make it a curse. No one wants to address it, but everyone fears it. We fear it and feel stupid to say so, so we don't.
Until we have it and then we are pitied as if we have been stricken with some rare disease. Look around, it is not that rare so we probalby need to speak up, sooner than it being too late. It wins that way.
Love my primary care doctor and got the blood work done and got the urology appt and the MRCP moved UP to Friday. It is not in this chick's best interest to feel this bad and pretend I need an answer, I need to check things off so I'm not faking not feeling as though cancer is highly likely to be eating my guts out.
Worry about it is inviting it on in, I think.
So there we go - onward and upward. Hopeuflly by Friday I can go back to just feeling like s#it but having a solid reason to not let my mind scream CANCER... Becuase not even going to lie and say my gut isn't saying that damn word. I think - there in lies the problem, my head and my gut start sounding the same and if I had a gut feeling to go with, I can't remember which was which. HA
Can't wait to write this chapter, embracing the suck 101. How to win at faking you aren't that sick and that cancer isn't first on your list of wtf is going on with your body. It sucks - being sick but it sucks even more if you are sick and trying to hide it for the sake of everyone else.
Hope this will end my life lessons - hadn't had the health scare yet so guess this was necessary and I LEARNED some major empathy. Checking it off the list and we will see if that is all I needed to know about life and illness.
Have a friend on dialysis and one with a brain tumor. I can not even fathom. If a kidney stone sent me into this much of a twist, not even going to say I understand chronic illness, but I understand how much we need to embrace the suck. Don't expect them to put on a brave face, help them be real about it. It sucks - bottom line.
My kids and my husband and my ex-husband and his wife are all saints, I finally leveled with them and they have agreed to not ask me how I feel until I know it isn't cancer. If it isn't I can be honest, if it is I can be honest. I cannot be honest that "oh it is probably this or that..." and pretend to find comfort in a gall stone or gulten intolerance situation. Nothing will comfort me until the next test is over and done.
So let me be an a-hole and mope like I am dying. I feel awful and I have a sneaking suspicion it is not an easy fix - so regardless... If it is gluten, I have a hard road ahead. If it is gall bladder I have a hard road ahead.
No road is easy and feeling like crap for 6 months has taken a tolll on my upbeat perky game. Feeling like stewing in misery, and if it is all for nothing, I honored my need to stew in misery.
Winning.
HAHHAHA
Will check back Friday - please let us know how the U/S goes - for sure will be thinking of you tomorrow!
crazycatperson and emsudone - my deepest gratitude for listeing to my nonsense. I feel it is best that we stick together in times like these and when I found some fellow wandering souls, I grabbed on.
Chicken
Well I ended up in the ER with an attack yesterday. Got asked alllllll the same questions and this time I could hardly talk. I was super dehydrated have lost more weight ((106 to 100, then 100 to 92lbs)
They were questioning whether it's my bile duct & pancreas since lipase was barely elevated. Told sometimes stress can cause abdominal pain (yep, had that Doctor who just can't believe you have anything wrong with your pancreas if your lipase hasn't skyrocketed which it has numerous times but not this time) they reluctantly did a CT Scan & asked who my gastroenterologist is, I explained I'm waiting for the referral from PC and showed the email asking my doctor when my referral will happen? I'm getting worse. So CT ends up showing the dilated bile & pancreas duct, slightly worse than last scan on file BUT it showed my small intestines were extremely inflamed & swollen. Since I'd been sick throwing up and the other they felt it was some infection and since I also have Lupus, that's not good. So they took sample to see if I have infection and will "call me" with results. Otherwise they don't know why intestines are so swollen & painful too. I was sent hope with nausea meds, antibiotics and told they'd call and I need to see my primary care so I can get gastro referral. I was just like oh my gosh please!! Someone help me! My doctor has an online portal and that's how you communicate with he and his office. When I got home I had an email from his nurse saying they had put in a referral. So I think the hospital doctor must've called him. He said the Gastro office should be calling me next week for an appointment. ER dr. said I shouldn't be worried about my dilated ducts. OK I thought, but I think I'll worry since they're getting worse and I just had some kind of attack upper abdomen & happened to have a problem lower abdomen. I'm stuck until I get into gastroenterologist who I hope will take it from my initial pancreatitis hospital stay & discovery of my once perfect pancreatic duct is now dilated as well as bile duct. I feel better though hearing that on the Internet research that many people normally may have dual duct dilation.
I'm just tired of being so afraid of these attacks coming on and having lupus and having doctors that just don't believe you or take the time to look at my chart right there on the computer showing my history. I Think I'm more exhausted from the visit than I am from the actual attacks. I hope everyone is doing well and getting all your questions answered. What a crazy journey this is & the unknown it scary. It's ok to be worried and my family just has to put up with me when these things happen because I've already had cancer once (melanoma) and they got it all, I'm not liking sitting around and waiting to hear I have pancreatic cancer now! I had a kidney stone in June, my third, it passed & wasn't so bad especially compared to these attacks. Take care and keep me posted! Emusedone (Susie)
Susie!!!!
Girl - I am sorry you are going through this but strength in numbers, scoot over on that gurney I damn near went this morning... It is the most frustrating thing to have zero reasons for my body to be all "wtf"
Did I share that I went to the ER 2 weeks ago? I think it is almost comical the way they treat the easy answer and move along. The ER dr said the same - no worry. What was wrong with me? I rambled it all off, CT scan was redone but a totally difffernt method and what was the glaring problem - constipation. Yep. So I got a 2500 fleet and problem solved.
NO
I knew I was constipated because I am in so much pain I would not push out anything - and I told her that constipation was no stranger to my ass - but the puking and diahreea was the other extreme, and that is NOT normal for me. Over the last 3 weeks things have gotten way worse, and not kidding I get up every day to be sure my eyeballs aren't yellow. I think that is what it will take for them to address my bile duct/panceratic duct issue - but thankfully I am getting the MCRP friday so whatever is awry we will have a clear picture and can move along. What the hell is up with this world, no one dare worry about cancer, that is silly... The minute we let on that um, could it be??? We are immediately made to feel ridiculous and since there is no reason to be this damn sick and have these many stupid symptoms - we stfu.
You aren't smart unless you are a rocket scientist and you ain't sick if it's not cancer. Until you do and then everyone goes "WHAT???" but you are so healthy???? Oh you poor thing - no no no. I have to laugh at my whole story thus far, even when all sympotms scream it - the minute you allow yourself to admit it, you get all kinds of people almost mad at you for being ridiculous.
Ok - I am ridiculous, but I am sick. If it is a gallstone I am going to have it set in a pendant and wear that bitch as a reminder that there WAS a reason for misery. Just have to find it - and we have to be the ones digging or else we suffer.
Blech.
OK let us know. I see the Urologist tomorrow too so my kidney stones and bladder issue should be addressed as well as this duct debacle. My stomach is swollen and I look pregnant. Making weird noises, constantly on the toilet and (sorry tmi) obvioulsy I am not getting fatter because all that is going in the bowl. I hate to worry my husband but I finally told him that part and that isn't normal either.
SMOOCH - when is the U/S crazycatperson???
Later ladies - Susie hope you are feeling a little better but yeah right, I know you aren't and it is ok. You don't have to fake it here - I think we all feel pretttty bad, but we will figure it out so keep up the digging ladies.
Chicken (Rebecca)
Hey not sure if you are still here but thank you for your help too - I agree I have had more guidance finding someone I know, nurses, NP's.. etc.
so defintely everyone reach out to friends to see if they know anyone that can help you get REAL answers.
Rebecca, Wow, I sure am scared of cancer, don't bring on here, lol. I'm glad you are able to look at this and still smile, that probably helps tremendously. You seem to have a great spirit. Will it be this Fri that you will get the MCRP and if so will they tell you the results right away?
emusedone, I am so sorry you had another attack. That's a lot of weight to be losing for sure. I hope you will get into seeing the specialist STAT. This must be hell.
As for me, I had the ultrasound done today, the tech said it will take a few days before the results go back to my Dr. I don't think I will hear back from him though since I'm going to be seeing the gastro, I'm sure he'll just send the results over to him and then he'll go over the results. But I'm not counting on him being able to see anything, last u/s I had they couldn't see the pancreas duct because of gas. You 2 seem like you are having much more pain then I am getting, I feel so bad for you guys... My pain is just a dull ache, nothing to send me to the hospital ache, I hope this is a good sign.