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, welcome to Mayo Clinic Connect. I can imagine that you're concerned about recurring acute pancreatitis attacks that hospitalize you as well as the details of recent magnetic resonance cholangiopancreatography (MRCP). I'd like to invite fellow members @harper7745 @stormchild74 @astaingegerdm @redhead1116 @mariouk into this conversation as they have experience with pancreatitis and/or intraductal papillary mucinous neoplasms (IPMNs).

Allow me also to spell out one additional acronym: CBD = common bile duct

Waiting until November is a long time. Should you wish to consult with experts at Mayo Clinic, here's the contact info to request an appointment http://mayocl.in/1mtmR63

What guidance have you received from your doctor(s) to manage the pain, bloating and nausea until further investigations can be done? How are you coping?

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@fogel1960 – I also welcome you to Mayo Clinic Connect!
Unfortunately, I know the pain and agony you are going through.
Your MRCP report indicates that your problem may be complicated, especially since you have ended up in the hospital so many times.
I also think November is too far away and recommend that you apply to Mayo Clinic for further evaluation.

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@colleenyoung

@fogel1960, welcome to Mayo Clinic Connect. I can imagine that you're concerned about recurring acute pancreatitis attacks that hospitalize you as well as the details of recent magnetic resonance cholangiopancreatography (MRCP). I'd like to invite fellow members @harper7745 @stormchild74 @astaingegerdm @redhead1116 @mariouk into this conversation as they have experience with pancreatitis and/or intraductal papillary mucinous neoplasms (IPMNs).

Allow me also to spell out one additional acronym: CBD = common bile duct

Waiting until November is a long time. Should you wish to consult with experts at Mayo Clinic, here's the contact info to request an appointment http://mayocl.in/1mtmR63

What guidance have you received from your doctor(s) to manage the pain, bloating and nausea until further investigations can be done? How are you coping?

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Thank you for responding & inviting others into! Any insight would be appreciated, I have a call with Mayo Clinic at 1 today.
They sent me home with Norco. I’m just afraid I am going to end up back in hospital for pain mngt( IV)
I am praying I can move forward and get an actual appt with Mayo Clinic’s with the right specialist.

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@astaingegerdm

@fogel1960 – I also welcome you to Mayo Clinic Connect!
Unfortunately, I know the pain and agony you are going through.
Your MRCP report indicates that your problem may be complicated, especially since you have ended up in the hospital so many times.
I also think November is too far away and recommend that you apply to Mayo Clinic for further evaluation.

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I have a telephone “ appointment “ with them today, 7/26 🤞🏻🤞🏻🤞🏻🤞🏻

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Hope something good comes from today’s appointment!

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@colleenyoung

@fogel1960, welcome to Mayo Clinic Connect. I can imagine that you're concerned about recurring acute pancreatitis attacks that hospitalize you as well as the details of recent magnetic resonance cholangiopancreatography (MRCP). I'd like to invite fellow members @harper7745 @stormchild74 @astaingegerdm @redhead1116 @mariouk into this conversation as they have experience with pancreatitis and/or intraductal papillary mucinous neoplasms (IPMNs).

Allow me also to spell out one additional acronym: CBD = common bile duct

Waiting until November is a long time. Should you wish to consult with experts at Mayo Clinic, here's the contact info to request an appointment http://mayocl.in/1mtmR63

What guidance have you received from your doctor(s) to manage the pain, bloating and nausea until further investigations can be done? How are you coping?

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Thank you!!

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I just left Mayo after being there a week. No clear cut answers to my stomach pain, back pain and weigh loss. They all were very kind. I had a colonoscopy & upper endoscopy . No cancer, they did do 7 biopsies . Final results: chronic idiopathic pancreatitis. My pancreas is filled with 80% fat. Stomach lining inflamed. They said they really can’t give me a clear cut answer. My concern is how I deal with us bad stomach pain & back pain. It hurts all the time. My other major concern is weigh loss & no appetite. I’m assuming no appetite is because my body knows it is going to cause me a lot of pain. I am down to 120 lbs and losing more weekly. I cannot eat or drink a bite of food. How am I going to survive. Anyone’s comments & help would be much appreciated!

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@fogel1960

I just left Mayo after being there a week. No clear cut answers to my stomach pain, back pain and weigh loss. They all were very kind. I had a colonoscopy & upper endoscopy . No cancer, they did do 7 biopsies . Final results: chronic idiopathic pancreatitis. My pancreas is filled with 80% fat. Stomach lining inflamed. They said they really can’t give me a clear cut answer. My concern is how I deal with us bad stomach pain & back pain. It hurts all the time. My other major concern is weigh loss & no appetite. I’m assuming no appetite is because my body knows it is going to cause me a lot of pain. I am down to 120 lbs and losing more weekly. I cannot eat or drink a bite of food. How am I going to survive. Anyone’s comments & help would be much appreciated!

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Did they prescribe any meds? Digestion issues stemming from the pancreas frequently take digestive enzymes like Creon. Is medical marijuana legal where you live? My wife wouldn't be eating at all due to nausea and loss of appetite is it weren't for high dose THC RSO every day.

Good luck and prayers you get relief.

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@beachdog

Did they prescribe any meds? Digestion issues stemming from the pancreas frequently take digestive enzymes like Creon. Is medical marijuana legal where you live? My wife wouldn't be eating at all due to nausea and loss of appetite is it weren't for high dose THC RSO every day.

Good luck and prayers you get relief.

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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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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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