Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

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dannyblues 07/24/2014

HI All,

I have been suffering from constant Left Upper Abdominal pain under the rib cage from last 2 years. Pain also radiates to back. When pain severe it spreads to lower abdomen.I have undergone uncountable diagnostic tests: 2 CT scans, 2 MRI/MRCP, EUS, Enzyme secretion test, 3 Endoscopy, 2 Colonoscopy etc.. I'm seeing the GI specialist from 1.5 year who is professor in Standford Medical College and he has almost given up in my case and says he has no diagnosis for me.

I'm searching for new GI doctor who can help in diagnosis of my disease.

I'm hoping help from you folks for helping me in giving recommendation for GI specialist in San Jose/sunnyvale/Mountain View/ San francisco Bay area.
Please help with your advice.

Danny

Jinxy7 07/25/2014

Danny I sure feel badly for you...I've had many, many tests too and they don't know what's going on either. It's so hard to be in pain everyday....it's the same story for me too. I'm hoping with this latest EUS that I'll get some answers.!!

dannyblues 07/25/2014

HI Jinxy7,
Thanks for your reply. Yeah I can feel your pain. I'm suffering from constant Left Upper Abdomen(LUA) pain from last 2 years. Recently I developed pain in lower middle abdomen pain which is like very mild cramp like and doesn't allow me to sleep. This pain is different from regular LUA pain. I had my EUS and pancreas enzyme secretion done together last year at Standford Hospital . EUS showed 4 out 9 markers which is suggestive of CP. But secretion test came out perfectly normal. So doctor who performed EUS was not able conclude anything. He asked me to come next year to repeat EUS.
My regular GI doctor does not believe in EUS and says results are very subjective. My GI doctor has given up on my case and has no diagnosis for me. I'm very much frustrated from day today pain.

I'm looking for Good GI doctor in San Fransisco Bay area who can give me answer for my pain.

Are you doing EUS together with secretion Test ? when are you scheduled for the test ? I wish you all the best for your EUS Test.
Wishing you pain free happy days.!!!

lsjjm 07/25/2014

Stanford did not help us either. Do NOT go to Dr ostroff @ucsf. Best bet is California pacific medical from those that have been there. Good go docs. Know about panc. Twoduct. On here goes there as well

drf0001 07/25/2014

Sounds like you may need to ask for an ERCP to be done,It's an endoscopic procedure but a bit more detailed.they can see the pancreas and all a bit better.Good Luck.This is a tough Disease Chronic Pancreatitis is bad,I have been living with it for a while,it just continues to cause problems,mine has caused liver damage.Eat low fat,dont smoke or drink and a good vitamin regimen like A,B,C

dannyblues 07/25/2014

hi Isjjm:
Thanks for your reply. Do you recommend any specific doctor from california pacific medical center SFO ?

Sesser 07/25/2014

I'm in the Bay Area and have seen every specialist here-and I'm in a very similar situation. Will send you a pm

dannyblues 07/25/2014

sesser, thanks for the pm

dannyblues 07/25/2014

Thanks drf0001 for your message. Sorry to hear that you are suffering from this. I have stooped taking alcohol from last 2 years and try to avoid fatty food.
Isn't the ERCP risky and cause complications?

drf0001 07/25/2014

It can cause a flare up,But as far as I know it's their best option to give you a correct diagnoses.

lsjjm 07/26/2014

I used to have the name but lost it...but from what I hear. Good place..good luck

drf0001 07/26/2014

I'am in South Carolina ,I suffered for nearly a year,with trip after trip to the ER with no Diagnoses.Finally a went to a little out of the way Hospital and was Diagnosed bu their Hospitalist,then proceeded to the larger Hospital here in town,spent 3 months waiting on a bed at the Medical University of South Carolina.I was then diagnosed with Pancreatic Divisim,they put a stent in that lasted 3 mos,then had to be removed.It was rough for quite a while then after my primary putting me on a regimen of vitamins( A,B,C,D,E,and Magnesium )daily. I hope this helps some of you guy's Best of Luck to you all.

deleted_user 07/27/2014

Actually the EUS is becoming more used as it shows more of the pancreas where the ERCP shows the ducts and it has a less than 1% chance of causing an acute attack. The EUS is the starting test and if they find something they d an ERCP to treat it if possible.

Good luck!

Sesser 07/27/2014

Yep GG is right-Eus is gold standard and complimented best with a secretion study as well. Most drs won't do an ercp unless its for treatment

drf0001 07/28/2014

When my Pancreatitis was first Diagnosed back in 2006,I don't think they even had the EUS procedure,if they did it was never done on me.I was sent to the Medical University of south Carolina for an ERCP.Then they determined that I had Pancreatic Divisim.I recently had my 1st EUS this month and it went well other than me waking up to terrible neck pain.I guess that's from the herniated disc in my neck,none the less after the procedure my neck pain has been worse than ever.Now I have to have an ERCP because the doctor said with the EUS he wasn't able to see the liver,since the pancreas has caused some liver problems,their wanting a biopsy.Hopefully this will help some of you going through the same issue's/

dannyblues 07/28/2014

Thanks drf0001 for your message. What kind of damage the pancreas has done to liver ?

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