Pancreatic 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.

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.

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.

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.  

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)

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.

ok glad you got it done and keeping your tummy in my thoughts and prayers - gastro is in a couple of weeks, yes?  I just have so much going on there is no way to try to guess - and I guess I am moving into apathy which is not my nature.  I see how hard it is to let the patient lead the way.  Everyone wants to fix, and I understand how it is easy to not dig deep enough.  If we fix one problem at a time we run in circles...  I promise no matter what, I feel this whole experience is a gift.  Finally I will feel better come hell or high water or heaven or whatnot.  HA!  I have to laugh, it is hard to be fearful with a giggle.  

I keep flashing back to so many times over the last 6 months that I should have been alarmed that something was amiss - but when you are growing spiritually there isn't much that suprises you.  Even trembling and puking.  God is all - settle down spazo and get to the GI doctor...  

HUGS,

Rebecca aka chicken

Preliminary MCRP is not bad not good - urologist took a peek and said ECRP is next. He is testing my urine for cancer cells - if clear, he's doing an in office scope of my bladder. If the C cells rear their head, he wil do the procedure in the operating room. He thinks I may have s cyst or tumor in my bladder causing the ho-ha stabbing pain so there is that - the general abdominal pain and huge tummy could all be related somehow. Or not. Just ready for answers so we can move forward.

Exhausting. And I'm still puking and have horrid D - feel zero energy. Like every day I feel worse physically with no real reason to feel so bad.

How you kids today?

Hello Rebecca,

I'm confused, but why was a urologist doing an MCRP? I thought that was for gastro, did he mention the ducts? I'm sorry you're bad, were they able to give you anything for the symptoms?

Fingers crossed that there are no cancer cells in urine.

opps. I meant to say I'm sorry you're feeling so bad.......

ok so GI called - the ducts have dilated more and they now will do a EUS

evidently my common bile duct looks better but the other ducts (I had no idea we had such extensive duct work down there) are worse.  My bladder is the other sketchy equipment that we will be looking into - the Urologist is scheduled to do that on Sept 9, unless the urine tells us otherwise.  So next up that nonsense and hopefully we will have a better idea of wtf is going on in my buddah belly.  Although I do love having a baby bump - kind of like that chick in Pulp Fiction - I love my little belly.  Just wish it didn't hurt so much.  

The puking and D is not fun either - something has to give.  My husband is awesome - he totally has given me grace to be a wreck right now.  It is hard when you look like you should feel fine - but you are far from fine.  We went to a party last week out of sheer will I showered and spiffed up.  It makes it almost worse to know how bad you feel but everyone is "you look amazing!" I almost cried several times.  Amazing is not in my vocab right now.  

I tell you this - I will never take feeling spunky for granted.  I hate hate hate it - I want to be the normal Chicken not this miserable cranky pukey chicken

hugs and love

Rebecca

OH sorry I just posted a reply but put a link to the EUS procedure that is next - guess that is a no no....

The urologist was for the bladder that got dinged on the inital CT - he thinks it could be a cyst or (most unlikely) a tumor inside my bladder that is causing the bladder connection to all this.  I get STABBY pain at random and it is like a horrible cramping inside my ho-ha.  That pain is one that I have had for a while but thought it was my cervix... until I had my cervix and uterus yanked... a few months later that stabby pain dropped me to my knees and I was all - CHRIST ON A CRACKER it is a PHANTOM CERVIX  

I tell you - girls we can't make this bleep up.  My body is a wreck, kidneys, bladder and duct work - OH MY

Hey - at least I am having a through checking under the hood.  I turn 45 tomorrow - I think my warranty is good until 45 year/45,000 miles so I had better get it all fixed this year

So the MCRP was the GI but I also had the urologist on the schedule, and he isn't at all worried about kidney stones fyi.  He said, yeah that is not causing your troubles.  So maybe the stones saved my ass - the stones are the only reason I went but I've had the bladder and GI issues for a while.  My kidneys are not happy but they aren't as worrisome as the other CT findings.

Life is a whirl huh??

Oh and the urologist was able to view the report since it is all done through the same healthcare system so he didn't give me the whole findings but he read enough to say - you will be getting the ECRP.  But when the GI called they would rather I have the EUS which I think is very similar...  

Sorry I am all over the place with my reply game - short story of today:

EUS next for GI

Scope procedure next for bladder

Kidneys - take a number

Ummm, this is all too spotty for me, totally doesn't make sense. Hence why I should be staying away from forums... What ever is wrong with you chicken I hope it all get rectified soon. Perhaps all these tests being done on us are making us too paradoid.

Oh what a relief - this is me too! Three months today I have been suffering with whatever the hell this is. All tests have shown my common bile duct and head of pancreas are dilated, I have pain, etc but nobody has said why or if there is any treatment. My bloods have started showing inflammatory markers and raised glucose levels after being normal for weeks but my medical people are just monitoring. I have a MCRP on Weds - my deepest fear is that they'll find cancer that all the other tests have missed. I've never had anything like this before. Can't work and feel guilty about being on such long sick leave. My husband is being a saint but all my family are in New Zealand and I feel so far away. Finding this thread amongst all the horror stories has been a godsend.

Honey bunches - I get you.

?it sort of makes me crazy how these symptoms have been brushed away and yet I am the healthiest of the healthy and I know my body - it should not take so much agony to get to the bottom of it all.  I am having the EUS next week - my MRI showed the ducts are further dilated and my blood sugar is not right.  My fasting is high and I believe the shaking and nausea/sweating is due to low blood sugar, it is as if my body is either not making enough insulin, or it overloads me and I flat out crash.  At least that part is making sense - I figured out the CURE for the shaking and nausea is a wint'o'green lifesaver.. imagine that - the miracle pill the doctors missed. HA

Are you nauseated a lot?  I throw up all the time and my potty issues are vast.  vast.  My stomach is bloated although good luck being fit and saying you have a bloated stomach.  yes I have stomach muscles but I know what a swollen stomach feels like on the inside and I feel like I have a 5 month baby bump.  I see photos and go "what??" I don't look that bad..  But I feel so bad.  So so bad

Let us know how the MCRP goes - and if anything out of these threads can do it is affirm that no, you aren't crazy.  If you feel something isn't right don't let fear or fear of sounding "silly" keep you from getting answers, no matter how you sound to others.  I hate that I am a train wreck of symptoms, and NO I do not look sick.  I FEEL sick, and it is hard to rock looking great when you feel unwell.  I simply refuse to let it get to me - mentally or physically.  even if it is something small - especially if it is,  Having so much going on sounds unreal, but I have to wonder why all at once.  Regardless, last week was super tough.   I let it drag me down mentally and since I feel so bad physically, that was a tough place to be.  Having people "listen" helps us all process.  

 But anyway, not being a miserable whiny baby.  No.  I will not let it make me helpless and hopeless in my mind - and I had to get all this nonsense straight before I could be in my current no freak zone.  Last week I went through the moping misery - this week I am all bring it on and my faith is all I need.  Faith in God and in MYSELF, that I am worthy of being worried and yet, I am fearless since I am not my body.  My body may be failing but my joy and happiness isn't going anywhere.  Game on.

Give yourself a pep talk and get in to that test.  Get answers and feel better.

Chicken

Hi Chicken

Had MCRP yesterday but afterwards had worst pains ever and last night... well, let's just say I'm fasting today. I feel very lucky that I don't get nauseated or throw up as I have emetiphobia so that's a blessing. Have everything else though. Can't believe this has gone on so long. If you don't have cancer or something readily identifiable, you get left in limbo. I was doing well until last week - really thought I was on the mend then it all came back. I feel like a shadow. I have a trip booked to see my family in NZ in late January and am beginning to wonder if I'll make it. It is my goal though. Back to the waiting game for results.

Did they do the fasting glucose and then the blood test to show your blood sugar "trend" can't remember the name - that's the wonky thing. Fasting glucose is high but my trend is low indicating hypoglycemia which makes sense what w my shaking and nausea. I've teetered on a seizure - pretty sure. Vision and balance goes haywire. This thing in my bladder - the kidneys - the duct work. All really strange and I'm hoping it's an inflammatory problem not some rogue tumors 😂

Hang in there - let us know results. If still dilated I urge you to get the EUS - then you will have answers 💪

Chicken aka Rebecca

Hey Chicken (I love chickens, by the way - would love to keep them again).

Yes, my fasting glucose is raised but I've not been told about any trend. It's all a bit vague. I keep pressing for answers but don't seem to get many. Is an EUC down the throat? If my pancreas is inflamed that could be awkward. I found the initial endoscopy (when it was thought it was my stomach) very distressing, what with my phobia (I retched a lot). It did bring on pancreatitus as well.

Convinced being right in the middle of peri menopause doesn't help. I was having problems of that nature before this capped everything off.

Fasting today to give everything a rest after a painful night. Trouble is, my tummy starts rumbling and that hurts too!

Nikki x

OMG we could be the same person in 2 bodies.....  the RUMBLING - wtf yo???  A couple of months ago I was tucking my son in and my stomach was visibly moving, I was like "blake it's the second coming - I am pregnant.."  He was like mom, no.  HAHAHA  No uterus, not even a possibility but I swear with the round bump and the constant moving and NOISE - it is odd odd odd...  It constantly feels like sharp pangs even when I am constipated - which is super annoying.  One or the other, and when I say I am a normally very regular girl, I pride myself in that bleep.  HA

It just made a huge noise as if to say "I know, right??"    

The only thing I can think of that has changed is that I HAVE been eating a bit more packaged food (cereal only) which was a total no no for about a year and a half - I went to all real food and it was astounding the way my body responded.  Come to find out I have the genetic mutation where I do not process folic acid (you should all check that out - MTHFR) and before I did the diet change I had high blood pressure - quit eating s#it food and bam, lost all my body fat and ding dang no high BP...  sort of irritates me that I got flippant with the folic acid (HALF of us do not fully metabolize synthetic B vitamins - which means folic acid builds in our blood and does not "turn" into folate which is how our body needs it in order for metholyation.  It is a lot of science and, no.  But suffice to say I was a competitive runner - and was always a bit on the chub side.  Even running 100 miles a week I had muffin top.  Went to all real food - no muffin no mo.  Sooo...  Now I am in the best shape of my entire life (got my forever body at 44) so looks wise, I am seemingly the healthiest person up in this joint.  I do yoga every day (when I am not puking/shaking/doubled over with pain) so this whole ordeal has been so out of the blue and ODD.  

Anyhoo - it's worth everyone's best interest to just assume synthetic vitamins are not great for us and try to eliminate B vitamins in the synthetic form.  It is ridiculous how hard it is to understand why we need to care about it - but we should.  Before February I was the poster child for why synthetic foods/vitamins make us fat - but now I am such a wreck I am not exactly the one to be promoting my "diet".  Just sucks because truly, I had been feeling the best I have ever felt and my body was what I always wanted (still is but this tummy pain/puking is taking the spring out of my step

Yes the EUS is down the throat under sedation - I go next thursday which sucks since I will have to cut our beach week short.  But I can't wait another minute.  I need answers and I know something is not right.  I want my spunk back, my kids are scared to death.  Hard to hide how bad I feel - but I am trying to live business as usual so that no one worries.  The other night I was throwing up and my daughter started BAWLING - mommy why can't they get you in sooner, this is not fair!!!"  

been rough for sure, so just know you have me over here understanding what you are going through.  

Love,

Chicken (rock on Chicken lovers... AHHAHA)

Hey Chicken.

You sound like an amazing lady. You rock! How you manage when you've got kids... I only have to worry about me and my other half. Good luck with everything - we WILL beat this, we just have to find the key.

I'm lucky in that I've never really eaten a lot of processed food (grew up on a farm, grew our own veggies, have a love affair with fruit) and since living in the UK, I have been blessed with a fabulous husband who is an amazing cook. I am big into natural things as much as possible - he gets furious when I am reluctant to take pain meds! I try to do daily yoga too when I can. I'm not perfect by any means but this has been way out of left field for me. Have been trying to do meditation but I have a mind like a hive of bees.

Been having a duvet day today and watching the Olympics - those guys are inspiring.

Nx

that is AWESOME - I am on a quest to get bleep food out of my kid's life too - it is so hard.  we have 5 kids ages 20, 17, 13, 12 and the baby (who we call Badger bc she is fierce) who is 8.  It's been extremely hard to know how horrible processed food is and still let them "be kids" and eat stuff I would never (now) put near my face.  My son who is 13 agreed to go a month withouth sugar or chemicals in food - and he LOVED it.  It truly is my fault for being more lax and I try so hard to make the best food available here at the house.  (we are a blended family - two were Corbett's from his first marriage, two were mine, and the Badger (her name is Summer is ours together....

Crazy story we have - great story.  Was in the process of writing a book, and this chapter has been by far the strangest and baby that is saying a LOT..  HAHAHAA  but it's all part of this life experience and I know we are all learning from it.  My heart tells me that there is more to come, but my head is trying to not overthink what my body is telling me.  That is the hardest part.  (which ironically is what I try to tell the group I help with "diet" - that we overthink what our bodies know how to do).  We try so hard to have the perfect body but the more we listen to "diets" and other people the less our bodies get what it needs to become the best body we can have.  The minute I stopped overthinking what I wanted to do to get that badA$$ body, is when all my drastic physical changes happened.  It really is amazing - I can't put a link but I wrote a blog post that shows how much I changed when I went all real food and quit obsessively exercising.  It's all about your energy, when we love our bodies exactly how they are - they are free to become what we want them to be.  

Now - I am having to take my own advice and I know my body is telling me way more than I "think" I want it to.  We will see next week, I hate learning all these lessons the hard way - but it is the way of my people...  AHHAHAA

Keep me posted girl - I can't even talk about the new symptoms that reared the ugly head the last 2 days.  On the one hand, I think I should call my dr and head to the hospital, but I am fighting with my head here.  I want to seem levelheaded about all this - afterall no one wants to believe they are worried about PC...  but I am getting ready to find out exactly which one was right, my heart or my head??  In this case, I hope my head is right!  So I am just being still, knowing God has a kick a$$ plan, and ignoring some things that hopefully aren't my body's way of screaming at me.  HA

hugs and love that body - I still love mine even though it's not really happy right now

Love,

Chicken

Hey Nx - how did the fasting go???

I am pretty sure my next few days are going to be heavy on the fasting focus.  I felt great yesterday - until I ate.  I was up all night long with horrendous pain and the big D word.  I found these ginger chew candy things at the health food store that have saved my LIFE - I wish I could attach a photo - I'm tech challenged..    but if you can find some of these bad boys I highly encourage it.  Especially if you start to get the nausea bonus feature to all this.  My blood sugar is extremely fickle - too much and I am lethargic, but when I eat I think my body dumps insulin and then I crash with the shaking and trembling s#it show...  it is horrible.  Not fun being me right now

So how do you feel today and yesterday with the fasting?  I am heading to the beach - wasn't going to go but now that I have figured out I can be marginally human during the day if I do not eat solid food, I am willing to risk the well being of my family.  Man have I been a ripping raging beyotch.    Not my nature and I feel so bad to put them through this.  hey - they saw me through the rehab debacle, what is another bump in this road of my crazy life.  

Thinking of you and wondering how it's going.  Did you get your results yet???? Let me know - and hey to everyone, hope everyone is feeling better and have some peace from the tummy tragedy of 2016.  

Love,

Chicken - to the beach I go.  I do not want to let this wreck the last week to enjoy my bikini.  I waited a long time to love my bikini and by GOD, I am going to throw it on and pretend I don't look 5 months pregnant.  HAHAHAHAHAHA

Fasting helped settle things down but had to make sure I drank loads to keep hydrated and stop my stomach churning. Felt very tired but that's to be expected. I worry about going back to work if this is going to randomly happen. I need answers, treatment or both else I'm going to be unemployed and/or unemployable soon.

Hi, Chicken. I love what you wrote. 2 years ago, I found out, incidentally, that I had a dilated pancreatic duct and common bile duct. I had been increasingly sick with indigestion and nausea over a period of months but had been treating myself at home not making any connection. I am a nurse and have worked in hospice for 3.5 years and when I found out both ducts were dilated i knew right off my possibilities of developing cancer. It's hard for me because I AM a nurse and I have seen the worst of everything and so I can't help but THINK the worst. I fight it but it's hard. Feeling sick lasted for months and so did the pain and I was fortunate enough to have good doctors. I had 2 EUS's. Both show no tumors but the 2nd showed I also have a fatty pancreas which also increases my chance of pancreatic cancer. I have made my peace with it now. If it develops, like you said. Bring it on. If not.... life will move on. I'm thankful for each day God gives me but I'm not afraid anymore. My only sadness is... my children, all 4 of them, are not supportive of me. Sometimes i feel alone. I have my husband and best friend but it would be nice to have my kids like other people. Thank you for what you wrote