I am just so tired of this. I would bet a million dollars this is my pancreas, but the bloodwork is normal. I have only been diagnosed with acute recurrent pancreatitis. I don’t want to be sick but I wish my bloodwork showed something??? I have an appointment with my pancreatic specialist on Monday. Even though my labs said differently, they do want to evaluate me, so I am glad of that. I just hope they don’t blow me off. Thanks for listening, I just needed to vent I guess. I homeschool my 4 kids and will be starting soon and just need to feel good, ya know?? The only pain meds my stomach can handle is Tylenol 3, anything else just causes stomach pain. I do also have Zofran and phenergan for nausea. I havew some Fentenyl patches, but I am afraid to use them. What do you think? Are they safe??
I hope all of you are doing ok. Wishing you all pain free days!
Keri
High cholesterol is part of having cp !!! Isn’t that a kick !
Hey Keke
I am diagnosed with Acute Recurrent too. And there are plenty of times
that I have terrible pain, nausea & toilet troubles but my labs are
fine. I know what you mean…if the labs showed something it helps to
validate why you are feeling so terrible!!
My GI doc says that doesn’t mean that my pancreas isn’t giving me
troubles. I won’t take anything stronger than T3’s either.
I don’t have any kids that I need to care for so I can lay in bed all
day and drink water and see if I can sleep it off. It doesn’t sound
like you have that option.
There isn’t a good solution. It sucks. But the best thing for us to do
is smile and not let it get the best of us.
amanda
Keke
Have you had an EUS to check for Chronic Pancreatitis? For those of us with CP, we all know that the enzyme levels are usually normal. I have never had elevated enzymes but my pancreas is “not normal” and has even been described as being “evil”. Many clinicians are not aware that CP will usually produce normal enzymes. We must educate them so arm yourself with clinical data to support your normal enzymes. If you need specific references, just google chronic pancreatitis and enzyme levels and you will get a slew of info. WRT fentanyl patches, I wear one and love it. I had a pain consult when I was an inpatient once and they converted my Dilaudid use to fentanyl and I have been wearing one ever since. I did have to get a reduction in dose as the fentanyl made me too sleepy during the day. I have Vicodin for breakthrough and I also get CPBs for the majority of my pain management. If you tell me how much you average with your T3 daily, I can convert it to fentanyl and tell you if they are in the ballpark with the dosing. Don’t be afraid of it, it was a wonder for me.
Good luck and wishes for pain free days and nights.
Teresa
Keke-
Have you had an ERCP before? I am having my first on with a possible
sphincterotomy in Sept. Since your problems seem similar to mine it
would be interesting to know how you did…
Jackie- I had a EUS last August and my GI said it was “text book
perfect”!!! Ack! That totally sucked. But since I have had instances
of elevated labs he didn’t say it meant I didn’t have issues. He said
I should be happy because there isn’t any damage.
Barb-I have gotten the tv grid for Sept so I will check it on Monday.
Anyhow, I am in bed today typing this on my iPod. I just HAD to eat
waffles this morning. I have only myself to blame.
Amanda
Vonnie,
What you say is certainly worth thinking about.
Thanks!
Jackie
Mrs Barb,
I was so sorry to hear about all that has been going on with you and your family. I hope that things are starting to get better for you. I will keep you in my prayers as well. Let me know if I can do anything.
hugs and prayers,
Dream
I can certainly relate to all everyone is going through and I am so
sorry for all of you. I thought it was just me !!! I am coming up on my
"10 year anniversary" of this cp labor day weekend, it has been a long
and very difficult road and one I would not wish on anyone, oh maybe a
few doctors !!! Oh that was mean ! 8 doctors later life is still very
hard with this disease. I try to keep very busy,(with the help of pain
meds daily) and I tell myself there are others in much worse illnesses
then mine, but I know this pain is so excruating and it plays a hugepart
in ones life and often colors our world, but we have to stay strong and
stick together, I read everyones posts everyday and my heart hurts for
each and everyone of you, but the truth is this disease just does not go
away or get better, so we have to be very responsiable for our
healthcare and often because we are in this we seem to know more about
the disease then many doctors, but this is what we live and study! I
just want to say thankyou to each and everyone of you for who you are
and know you ARE important in this life and we have a gift of being more
symapthetic to people in pain, that is a big gift in itself. Now has
anyone gone or familiar with the swedish medical center in englewood
colo? My dr gave me a great brochure on it and they are a center for
diseases of the liver and pancreas, I live in kansas and if it would be
worth it I would be more then willing to go to colo as it is my fav
vacation spot ! Please let me know if anyone knows anything, maybe we
could all meet at their doorstep !!!have a pain free night and
hopefully tomorrow will be a better day for us all !
Love and prayers to all
julie
Thank you so much Dream!!! It is late and I have been reading for over an hour trying to catch up wow the seasons are changing again, and I swear that this has a lot to do with how we feel, and how our attacks seems to flare when the weather changes or there is a front moving in. I think I said something about this about 8 months ago to watch the weather pattern. I truly believe this effects me! anyway hon I will email you tomorrow and chat more for now I am pooped! Have a pain free evening and day tomorrow…
Big Hugs with all my love,
Barb 
the “sphincter” that relates to the pancreas connects the ducts from
the pancreas to the duodenum. I suppose you could think of it as the
faucet handleand can effect the way the enzymes get out of the
pancreas. The “water” pressure can be out of whack with the enzymes
and the sphincter can be the cause.
I haven’t been to anyone in Omaha other than Grant but I don’t have
ANY other health issues like you. A new doc may look at the whole
picture in a different way and that can reveal different options.
My ERCP is the week of Sept 15. I had my pre physical on Thursday. It
was all good except I have high cholesterol! Can you imagine? My diet
of apple juice, apple sauce, plain spaghetti… My doc was just as
surprised. It isn’t too high to be concerned, just odd.
Nights,
Amanda
It strikes me as odd that so many of us have had so many tests and procedures (especially the EUS) with “normal” results. It makes me wonder if they just don’t know exactly how to read it, or if the test itself is essentially useless! We all know how we feel, yet all the doctors seem to tell us is that the tests come back normal so it must be something else. I’ll keep trucking on like the rest of you and just do the best that I can. I pray that everyone can have a pain free (or at least tolerable) day.
hugs and prayers,
Dream
OMG…you guys are so great, I had no idea that high cholesterol could be related to the pancreas. I’ll be sure to bring it up with my GI.I do know that my good cholesterol was at a very good amount so my doc wasn’t too concerned by my moderately high bad level. My dad has had bad cholesterol but he has really bad dietary habits! Talk to you soon! & I will talk to Barb later about the show. I am pain free and not nausea this morning!
Amanda
Oh doesn’t it feel so great to wake up and feel half normal !!! I wish
you a very good day ! I found out about the cholesteral thing from one
of my dr!
Have a fab day!
julie
My doctor told me once that the EUS is not a definitive test for the pancreas. He does too, but if nothing shows up he does the ERCP. Especially if I am in constant pain.
The EUS should be just one step in the procedural ladder.
Swedish Medical Center in Denver. I have never been there, but I do know it is a good place. University hospital is also good. The only problem with University is that the GI I had there doesn’t take patients. He just does procedures. He was very good.
If I were you I would go for it. I know that there are GI doctors in Denver that are more progressive in their thinking instead of conservative. If you want to hang onto your pancreas for as long as you can, you will want to keep that in mind.
My doctor in COS is more conservative. The doctor in Denver is more progressive. I lean toward the conservative side but I am not in as bad shape as some of you. I think I will know when the time has come to take more agressive action.
This disease is so personal!!! And everyone is so different in it!!! God speed on your quest and please let me know how it turns out. If you go let me know and I will see If I can get up to Denver to meet you.
Vonnie
Jewels, Please access through the friends section and let me know what you find out.
Vonnie
Well ok then, and thank you for explaining this to me! This is why I see it on my tests that I have had done in the last year! The MRCP/MRI that I had done showed a “twist” in one of the ducts leading from the liver to the pancreas how that happened who knows…I did tell my husband that when I had my gallbladder removed 12 years ago, it went way wrong an overnight stay turned into 4 weeks with a complete blood transfusion and another surgery at midnight-grrrr. They did tell my husband that everything had to be taken out of the stomach area to clean the blood out to see which artery was laser come to find out the damn thing bounced all over inside me…I still wonder if this is the reason for my pancreatitis/liver/blood/fibro disorders??? I guess I will always wonder.
Also if this is the reason for my low platelets ya know that complete blood transfusion was an emergency thing and that was all my hubby could do to keep me from dying. Maybe that person had blood issues and didn’t know it??? anyway could you High Cholesterol be hereditary? cause you sure don’t eat the things that cause it, but they have said some people that have pancreatitis tend to get cholesterol issues. It’s my good cholesterol that is to low, my bad is within normal??? go figure that one-lol…Ok hon again I want to tell you best best wishes for your upcoming surgery, I will be thinking of you like always If you need to chat feel free to email or call me 402-470-0416 I am home most of the time, except on Monday and Thursday afternoons ok…Really if you just want to vent call/email ok…
Big Hugs and all my prayers…
Love, Barb
Okay I will do that as I have started today checking it out!
Hiya Barb!
I’m in south Florida so I don’t know if the changes in seasons effect us…
I do know that nasty weather does indeed effect me. Florida is interesting
today as we are expecting hurricane force winds and rain… It will
interesting to see if the pain gets worse during the storm. Praying we all
have a pain free day and night!
Hugs,
Jackie
I heard back from my doc. I am getting an ERCP with biliary/pancreatic manometry? It is supposed to test the pressure/level of the enzymes coming from the sphincter?
Every time I hear the word sphincter I think of Wayne’s World, the movie…anybody else have that problem?? hehehe
Amanda
Hi all,
Well I have seen my panc specialist. He was a new doc (my doc left the clinic) He seemed very familiar with my case, I was thankful! The last notes had suggested that they may do ERCP with sphincter manometry, but since I still have my gallbladder he wanted to start with removing it. He explained that even though my hida scan showed nothing, there could be micro stones irritating my ducts causing the mini-flares. He did FINALLY agree that these are probably mini-flares even if the bloodwork shows nothing. I will hear from the surgeon later this week and get that surgery set up. He was saying that the risk of the removal of the gallbladder could relieve my issues and is much less risky for a serious bout of acute pancreatitis than having the ERCP, so we are starting with the least dangerous first. I am fine with that. Then if I still have problems, he said we would do the ERCP/manometry. Now my question is
How many of you guys had an acute pancreatitis flare post-op of the gallbladder removal???
I don’t mind getting it out, I just need to remain healthy. I have alot coming up and need to be organized and ready for the worst, you know??
Well thanks for reading. I am hoping to get this scheduled for before Oct. I will update when I find out.
Keri