Pancreas or something else

Any out of the box thinking why after a year and a half of gall bladder removal 11 attacks, 3 ERCP's, 3 sphincterectomy's, no cysts, stones, auto immunce pancreatitis that the bile duct is elarged along with the pancreas?
Lipase is elevated when attacks happen but after the last ERCP there is no need for enzymes with each meal.  Why is the pressure in my husband's chest so bad all the time.  He is 42 and up to 3-4 Percocet a day with Ambien at night.  Extremely fatigued.  Can't travel anywhere now.  Stress seems to make things worse.  Could the Percocet be adding to the pressure?  In another month we are scheduled for a spyglass and liver biopsy to just wait again.  MRCP and CT show nothing but continued enlargement.  Any direction or help would be appreciated. Desperate and hurting.

[Banned1]

Hi James & Tawny:

I'm so sorry you still haven't gotten any answers.  I'm really sorry that James is still suffering.  I'm not a doctor and I know next to nothing about this stuff but I'm learning through my own illness.  These symptoms could be SO many things including microscopic sludge/stones in the common bile duct, gallbladder problems, Sphincter of Oddi Dysfunction, Small Bowel Bacterial Overgrowth, acute pancreatitis, chronic pancreatitis, autoimmune pancreatitis, mininal change chronic pancreatitis, etc.   Pancreatic and ductal pain is among the most horrendous pain there is.  If the Percocet are not managing the pain, a sustained action medication might help!  I sympathize about the fatigue but I haven't found anything to alleviate it.

Has James had an Endoscopic Ultrasound (EUS) and MRCP-S (Secretin) to eliminate Sphincter of Oddi Dysfunction?  The EUS can image the pancreas and ductal system.  The EUS does require sedation and is similar to an upper endoscopy.  It picks up things that other tests can't.

Many people have great success with digestive enzymes and pancreatic enzymes.  Within two weeks, some people are pain free and their bowels are totally normal just due to enzymes.  This is something you can talk to your primary Doc about.  I'm told that they won't do any harm so really - unless you have side effects - why not try them?  Your Doc might even have samples.  This reduces the amount of work the pancreas has to do which will also reduce any damage to the pancreas.  You can get them at the health food store, too, but make sure they only have proteases, amlyase and lipase.   The name brands include Creon, Pancrease, Pancron, Protilase, Ultrase and Zymase.

A low-fat, fibre-rich diet can make a BIG difference.  Eliminate fried foods from your diet and starting with bland foods, you may get to a point where you have no pain.  Then you can add new items to see how you feel.  Less than 30 grams of fat per day is a great starting point.  Of course, alcohol is a bad idea but when you're sick, you're probably not drinking.

Hopefully you are keeping a log of everything that goes into and out of your body and how you feel.  It seriously helps to identify patterns in behavior that contribute to pain.

You are not alone!  Try to stay positive and reach out for support when you need it.  Talk to your Doctor, family, friends, co-workers, church or social service volunteers or anyone you feel safe with.   Search yahoo! groups for "Sphincter", you will find quite a few groups.  Both Michele's and Maddi's are worth joining.  There is a lot of fantastic information there that might help you.  Since many of us are relatively house-bound or bedridden, this also provides a much-needed social outlet.

Take care of yourselves and each other.  God bless, good luck and Godspeed.  All the best,

Sam

[Chrissy1975]

Hi..I just joined this site to see if I could possibly help anyone out.  I too have suffered with years of "upper right quadrant" pain as it likes to be called.  This pain would be so severe that it would "pierce" through to the back area at my shoulder blades.  I use the word pierce literally because that is the most common way I could explain it to my doctors; feeling like something was piercing right thru me from front to back.  This all first started with gall bladder stones, one getting hung at the common bile duct, before gall bladder was removed a week later.  From this point on the journey continued.  I have seen multiple gastroenterologist with a handful of ERCP's, MRCP's, regular CAT scans/MRI's, labwork, etc.  The ERCP's would only give a month or two relief before the pain would come back...almost worse than before.  I finally was sent to a gall bladder/bile duct specialist who has actually done years of Sphincter of Oddi Dysfunction studies and reports.  He and his collegues performed yet another ERCP with no real results.  He started me on a medicine called Hycosamine.  This was an extended release medicine that I take twice a day.  For the first time in several years, I have been pain free for 8 months now.  Upon my last check up with the doctor, he said that it is possible that I may be able to come off of the medication after a few years; as his findings show that this SOD can improve over time, if not just stop all together.  No other test were performed d/t the medication having such good results.  Personally, I am just fine and dandy with that....hospitals, doctors visits, and more testing is the last thing I want to do over again!  I hope this helps you out...I continue to pray for others who have experienced this horrific pain and hope that peace can be found as it finally made it for me.  May God Bless You!

[Banned1]

Thank you so much for posting.  It's wonderful that you've found a medication that is helping you.  Unfortunately it is unavailable in Canada at the moment.  Maybe that will change in the future and I will be able to try it.  

Continued good health to you and have  a wonderful summer,

Sam