Pancreatitis: Questions about further investigations

Posted by fogel1960 @fogel1960, Jul 25, 2021

I have been hospitalized. 4 x in last 6 months with acute pancreatitis. My liver enzymes go high, then go down, except the Alkaline Phosphate, that remains high.
I have sever stomach oain that radiates to upper left back. I’m nauseous. I am so bloated it hurts.
I’m not jaundiced
I recently had an MRCP, it said:my CBD is at 13mm, probable right adrenal myelolipoma,
Foci within the pancreas likely represent IPMNs.,
distal CBD stricture or occult ampullary mass
There is mild intrahepatic biliary ductal dilation.
There is a cluster of T2 hyperintense foci within the pancreatic body
. There is a T2 hyperintense focus within the tail the pancreas measuring approximately 3 mm.

I know I wrote a lot down but I’m praying someone in this group can give me direction. They cannot get me in for an EUS until November. Should I try to get into Mayo?

Interested in more discussions like this? Go to the Pancreatic Cancer group.

@fogel1960

I have just been diagnosed with Chronic Pancreatitis, near completely fatty replacement of pancreas and my CA 19-9 value is 12. Very low Vitamin D & high level of Alkaline Phosphates. Can anyone tell me how good or bad this is?

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Bear in mind that most of us here are either patients or caregivers, not medical personnel. The high limit for CA19-9 is 35 so you are within the range of normal. I actually know one of the researchers who developed the CA19-9 test and measurement. There's no magic to the "35" number. It is 2 standard deviations in the reading when a test sampling of normal test recipients get the CA19-9 test. Your CA19-9 shouldn't be a worry unless you're doctor sees other issues.

If your gastroenterologist is like my wife's, a high alk-phos is a concern. My wife's gets very high while in chemo and it slowly returns to a better range when she has extended breaks from treatment. He's never offered an option other than getting off chemo which of course isn't an option for my wife.

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Hi @fogel1960, it sounds like you've had thorough investigations done at Mayo Clinic and a confirmed diagnosis of pancreatitis. But that you've left with many questions about how to manage pain and concerning weight loss.

I moved your additional questions and follow-up to your original posting so that @astaingegerdm can also see your results and we can continue to seek possible solutions together with @beachdog and others.

Fogel, I know what it's like to think of all the questions I should have asked after appointments. As a Mayo patient, you have access to the patient portal where you can ask follow-up questions of your team. Have you downloaded the Patient Online Services app?

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@fogel1960 – I think my diagnosis was same as yours re chronic pancreatitis. However, you seem to suffer much more. I’m sorry! I get “attacks” now and then after eating something with the wrong fat.
My pancreas is also largely replaced by fat.
Your weight loss is worrisome and you need the doctor’s input on how to manage it, especially since you have chronic nausea.
I saw Mayo GI for several GI problems.
I also had questions after my visits. I would use the patient portal for some questions or leave a message to call me. I even sent a FAX- direct email was not available then- to my doctor, where I can go into more detail -I would get a call back the same day.
I hope you are taking Vitamin D replacement now. The D vitamin seems to play a big role in our general health.
You probably are deficient in others too- nutritionist can help.
If I were you I would send a message to discuss these important issues.
You spent several days there, but you are still left without answers as to how feel well again.
Im stubborn- I keep asking until I get answers I can use.
Hang in there!!

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To @fogel1960, @harper7745 @stormchild74 @astaingegerdm @redhead1116 @mariou and other members who are dealing with pancreatitis. Here is information about a virtual webinar being held this Thursday, January 20, by the National Pancreas Foundation. There is no cost to attend. It will provide information that could be helpful to you as you deal with this difficult digestive disorder. Here is the link with more information.
https://pancreasfoundation.org/support-current-npf-events/

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@hopeful33250

To @fogel1960, @harper7745 @stormchild74 @astaingegerdm @redhead1116 @mariou and other members who are dealing with pancreatitis. Here is information about a virtual webinar being held this Thursday, January 20, by the National Pancreas Foundation. There is no cost to attend. It will provide information that could be helpful to you as you deal with this difficult digestive disorder. Here is the link with more information.
https://pancreasfoundation.org/support-current-npf-events/

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Awesome. What time?

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@redhead1116

Awesome. What time?

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Hi @redhead1116

You will need to open the link (click on the blue link) in order to register. You will see that it is from 7-8 p.m. EST. Be sure to register so that you will get the instructions for logging into the meeting.

Let me know if you have any other questions.

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I registered but didn't get tonight's link. I😔

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@hopeful33250

Hi @redhead1116

You will need to open the link (click on the blue link) in order to register. You will see that it is from 7-8 p.m. EST. Be sure to register so that you will get the instructions for logging into the meeting.

Let me know if you have any other questions.

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I NEVER GOT A LINK FOR TONIGHT'S ZOOM MTG.
BUMMER! SHERYL ROGERS

Sheryl Rogers

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@redhead1116

I NEVER GOT A LINK FOR TONIGHT'S ZOOM MTG.
BUMMER! SHERYL ROGERS

Sheryl Rogers

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@redhead1116

I'm so sorry that you didn't get information on attending the webinar. Sometimes an organization will record a webinar and post it on their website at a later time. If you want to see if that will happen, their email address for questions is info@pancreasfoundation.org.

If you find out that it was recorded for later viewing, will you let me know?

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@fogel1960

I was on Creon this year and did not help??
I wasn’t prescribed anything. I think of a 101 questions I would like to ask the Dr now. My husband &/I were so shocked sitting down with Dr and he just said “ they can’t find the reason, except Idiopathic Chronic Pancreatitis “ He told us when he has to give news like he did to me, that some people actually wish the Drs could even say “ you have cancer”
I related…..at that time at least.
No meds, no management plan…..
I was so concerned about my weight loss and no appetite. I thought “ I will just deal with the pain”. Tho that is much easier said than done. My my weight loss is so troubling & I know I can’t keep losing weight & not eating! I loss 32 lbs in 7 weeks & Im a fairly small person so it is really bad.
Medical marijuana is legal but one I of my Drs is against & do random drug tests, and I have to see him because he manages a Nerve disease I have, Reflex Symphetic Dystrophy ( RSD)
Now I just don’t know what do to do. We felt like Mayo was our last hope and came back home a week later stunned we have no answers nor guidance
Do I just keep going to the hospital to be admitted when I have a Pancreatic attack???
THANK YOU FOR REACHING OUT!

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It's your body and if Medical marijuana helps why not try it . You will never know until you try something it can't hurt you any worst then what you are going through.

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