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Avatar universal

Idiopathic Pancreatitis question

Hello,

Thank you to anyone who may respond and offer information in regards to my post. My simple history is I have been diagnosed with acute pancreatitis and then was upgraded chronic p. I have been to a slew of doctors(GP/GIs) who have done numerous tests including multiple ultrasounds, amylase/lipase serums, ct scan with contrast, and a hida scan with all of them showing negative results.

My pancreatitis seems to come and go for no apparent reason. Most recently it had been silent for 8 months then flared-up out of nowhere. I went to my GP again since he has been the only one who consistently tries to determine the cause, despite no luck yet. He suggested perhaps cytomegalovirus as a possible cause but has no way to substantiate the causal link other than I have tested positive for it. A few symptoms that are only present when I have pancreatitis flare-ups are small black specks in my stool or sometimes even small red spots. I don't know these are of any concern as related to blood or just rather undigested food from my pancreases inability to perform fully.

Most of my questions to the doctors go unanswered and other symptom explanations are shrugged off. I've asked about the specks and the doctor didn't really explain what they were, or for that matter what exactly is going on in my body. All I know is I experience pain in my lower left back(above hip that wraps around to back) and through the middle of my abdomen that radiates to shoulder.

I would greatly appreciate anyone who could provide perhaps some enlightening literature or thoughts as how to proceed since almost all of my questions and diagnosis still remain unsolved. Any questions I should ask the doctor, or should I try and find a pancreas specialist?

Once again, thank you to anyone who may respond I greatly appreciate anyone's effort to help me solve this medical mystery.
5 Responses
Avatar universal
Do you still have your gallbladder and is it functioning properly? In some cases problems with the pancreas can be traced to GB issues.

Have you been tested for autoimmune pancreatitis?

Has it been suggested that you take any specialized enzymes to help you with your digestion?

Have you requested that a stool sample be done to investigate the 'specks?'

Avatar universal
Hello CalGal,

Thank you for responding and inquiring. I do still have my gallbladder and it has been tested and functions normally. I haven not been tested for autoimmune pancreatitis or had a stool sample done. Nor have taking enzymes been suggested. From all of my research I think my pancreatitis at this particular moment in time is quite low-grade which may be a reason my GI has taken a very slack approach.The GI didn't seemed concerned about the black specks and didn't inquire any further after I mentioned them. But my pancreatitis is still of course an issue that should be seriously addressed.
Avatar universal
Sorry don't mean to add too much at one time for anyone who may read this but, CalGal I did a little research into Autoimmune Pancreatitis after reading your post and noticed a common treatment is prednisone and my GP actually just wrote a prescription for Cortef a similar medicine to see if Cytomegalovirus/Pancreatitis would respond to it if I felt up to trying it. I have no filled the script yet but I may give it a go. Only reason I haven't is didn't know if there may be any adverse side effects.
Avatar universal
There are going to be side-effects with any med including aspirin, so don't be surprised if there is a down side.

If you've been to GI's, have any of them been specialists in the pancreas? If not, find someone who is and talk to them. But before you do, make sure you personally have copies of all of your test results and read through them personally. You'd be surprised at how often there might be small indications of 'something' on those reports that might have been overlooked. Docs will often look for the 'bigger' things and dismiss the smaller stuff because they're used to the life-altering things - not the smaller things that make life miserable for most of us.

Pancreatitis shouldn't be viewed as low-grade. Most organs are 'self-correcting' but that organ is very delicate. And you can't really do without the exocrine and endocrine functions it provides. You're not going to be a happy camper if that organ is compromised which it already is.

Your GP is not the person to be handling your care unless he's working with a specialist who really knows and cares about your condition. Thank your lucky stars you've got such a caring individual, but you need more assistance.

What tests specifically were run on your gallbladder, and what were the results? Please don't say 'they told me it was normal!' If you don't have the written results, get them and read them. What was your ejection fraction? What were and are you amylase/lipase levels? Have you ever had white stools? What about extended periods of 'acidic' diarrhea? Any jaundice or red palms of your hands? Go ask for those stool tests and make sure the specimen contains the black specks.
Avatar universal
Oh, and what kind of diet have you been following? Talk to your doc about diet and enzymes.
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