Pancreatitis: Questions about further investigations

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.

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?

@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!!

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/

Awesome. What time?

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.

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

@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?

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.

If seems that several people missed this. Was it recorded and can it be sent to us?