Help with diagnosis

[eskimo]

My husband is 50 y.o.  In 11/1999 he exp. upper abdominal pain/discomfort.  Acid reflux?  consult w/family dr -prescribed prevacid & referred to specialist.  2/2000 consult w/spec. who then did a upper endo. & sigmoidoscopy - results for both normal.  4/9/2000 - colonoscopy - 1 - 5mm polyp in rectum removed. Neg. results.  3/7/2001 - fall from 12' at work onto pavement - burst fx L1, fx R radial neck & inj to rotator cuff.  no surg. - in brace for 6 mo. - weight at time of inj 168 lb.  3/6/2002 got sick while on vac in nevada - vomiting, upper ab. pain - went to clinic they did rectal ex - trace of blood in stool.  taken by amb to vegas - diag acute pancreatitis.  enzymes elevated. treated w/ i.v. pain meds & protonix, upper endo done 3/7/2002.  D/C 3/8 w/ rx for protonix 30 mg dly.  completed course of protonix.  4/17/02-f/u w/specialist at home - expressed concerns of weight loss (now 149) - recommends Ensure.  6/23/02 - enroute to indiana, he gets sick in seattle -hosp.  vomiting,upper ab pain --ultrasound & blood show acute pancreatitis-treated i.v. demerol. ct scan of pancreas shows no masses - but shows some "polyps" in gall bladder.  9/2002 - met w/ new specialist at home - recommends consult w/surgeon re: gall bladder.  9/30/02 - gall bladder removed (lapro).  weight is now down to 132.  1/16/03 - symptoms return- vomiting, retching, upper ab pain.  blood & urine results normal - no pancreatitis.  treated w/i.v. demerol, phenergan & fluids (d/c in 4 hrs).  1/30/03 - vomiting after meals but no ab pain - sees family dr who prescibes protonix.  3/6/03 - upper endo - no abnormalties found.  3/12/03 overnighting in seattle - vomiting, retching, ab pain,,,taken by amb. to hosp. blood & urine tests normal.  treated w/iv phenergan, benadryl, dilaudid.  3/14/03-same symptoms return in indiana-treated as outpatient ine.r.-w/ivdilaudid,phenergan&fluids.  blood&urine results normal.4/25/03-consult w/specialist at virginia mason in seattle,4/28/03 -he performs ERCP - pressure in bile duct is elevated about 40 mmHg consistent w/ampullary stenosis.  he did biliary sphincterotomy.  good drainage of bile & a balloon cath was passed to confirm adequacy. no stones retreived.  we came home and he started eating good, had a good appetite for the first time in 18 mo., gained 8-10 lbs in 4 wks. we figure he is "cured",  then  he started losing appetite again.  hasn't felt very good for a few weeks.  6/26/03 - symptoms start again. 6/27 - vomiting, upper ab pain although not as bad as it used to be - admitted to hosp. treated w/i.v. demerol & fluids.  blood test shows elevated white count, but f/u blood tests normal the next day.  ct scan of pancreas done - normal, not even inflammation.  released 6/29/03 w/prescription for viocase.  we will f/u with specialist here 7/15.  questions: could it be ductal spasms?  i read that isn't possible after a sphincterotomy. why are they so sure it is a pancreas problem if pancreas looks so healthy on ct scan?  would you recommend endoscopic ultrasound of pancreas?  we are very concerned about weight loss - now at 132 again.  he eats pretty much low fat but will eat an occasional cheeseburger.  he drinks beer but not daily - maybe 3 or 4 on a weekend night - he doesn't smoke cigarettes but smokes a cigar occasionally.  doesn't inhale them.  he is medically retired from truckdriving due to fall in march 2001, but is very physically active.  his father died at age 62 from cancer although we can't find out what kind.  mother is living, age 80, overweight & diabetic.  any comments or suggestions are appreciated.  thank you.

[beebug]

Lanikins, sorry about your loss. I hae never heard of that condition. Can you tell me what it is? I had the ERCP done Thursday and I had a stone in my bile duct plus a lot of 'garbage' again.  Doc removed all of it.  I am on Actigall, twice daily for 6 months. I am not sure why my bile duct keeps having problems!  Anyone out there had anything similar?

[lanikins]

I posted before but please have them check him for mesenteric/celiac ischemia.  Those are the exact symptoms and I should know because I just lost one sister to this and have another with it also.  Please make them do a doppler ultrasound of those arteries.

[beebug]

Kristin,
Please let me know what your outcome is.  My ERCP is this week. If you will give me your email, i will let you know what my gastro found.

Beebug

[krisg]

well so much for waiting 6 months after surgery.  I was in the ER for 4 hours the other night for another attack!  They tried the usual, GI cocktail, tordal,some pain med., more tordal, then 2 more doses of demerol and ativan until I passed out.  I have been having attacks since I got home and am currently taking some Loritab and demerol for pain.  Sometimes It gives me an hour or so of relief.  I don't know what to do next.  I know in my heart that the dr's can't help and the next step is another ERCP with possible repeat sphincterotomy. The problem:  the doctors here are not specialists in that field and I will only let a specialist touch me.  Therefore I have to travel a great distance to get to a specialist.  Please wish me luck!

[beebug]

I live in Oklahoma, so I use a a doctor with an adult gastroenterology clinic in Tulsa.  Feel free to email me at ***@****. I think it is a bad deal when you have to go 1000 miles away to get anything done! Please let me know how you are doing!

Beebug

[beebug]

Kristin,
I just know that surgery is a lot bigger ordeal to go through. I don not tolerate surgery well, so I am glad they can attempt a fix with an ERCP.  I would imagine if this happens time and time again, that surgery would be the answer.  My first ERCP was in October and I got 3 months relief from that. I have been going through this current bout since February. You and I both know that is too long!  I have a really good gastro doctor and that helps!  You were so right to gather up your records and find another doctor! Sometimes, I think doctors just don't realize how much pain we are in.  They don't see us at the worst time when the attacks happen.  Please let me know what happens with you!

Beebug

[krisg]

thanks, and I will keep in touch by posts as I approach my 6 months from surgery.  You are right when you said the doctors have no idea of the pain because by the time they arrive in the ER I am usually full of demoral or morphine and feel alot better.
I hope the ERCP helps you get relief for a long time.  I know that repeat ERCP's for the rest of my life sound dreadful but what are we to do?  These attacks are so intense that everyday life is impossible. I will keep in touch with my dr. (1000 miles away), since he is the only one who seemed to really know alot about these things.  Good luck with your upcoming surgery, and let us know how things work out!  Do you mind me asking what medical center you used?  I went to the University of PA.

[krisg]

thanks again for posting.  I finally feel like I can relate with someone else in the world!  My attacks were sporadic for the first 4 years. (once a month, then three months, etc...) The doctors kept diagnosing me with IBS and severe acid reflux.  My first attack was within hours of my gallbladder surgery(5 yrs. ago). I was tested with an ERCP about 3 years ago for Sphincter of Oddi dysfunction.  The specialist said all was fine and It was probably IBS.  I took his word until last summer all heck broke loose.  2 major attacks in 4 days with ER visits both times.  I went back to the specialist and he said he didn't have time for me!  I then went on a mission and gathered all my medical records and tests from all hospital visits and found my liver enzymes were elevated during each attack. I then went out of town (1000 miles from home) to another dr. and a university hospital. I was having attacks almost every day.  They did the ERCP in Feb 03.  The dr. said he had to do a precut just to get into the sphincter, then another generous cut in the bile duct to open it up. I also had mucous coming from the bile duct and a high grade of stenosis (narrowing) of the lower part of the bile duct.  Amazing what changing doctors can do!!  My attacks before surgery were like going through labor (only higher up on the body). Severe pain, hard time breathing, sweating , chills, sometimes vomiting, would last 5-6 hours and the pain was 10-higher on a scale. Since the surgery the attacks are more controllable. I say that because I finally understand what is happening to me and I can focus more through the pain. The pain is about a 7-8 on a scale and it only lasts about 1-2 hours.  So compared to before surgery, it is alot better and only happens about once a month now.  How long have you been battling this?
Please let me know what your doctor says about repeat ERCP's and surgery.  I never knew that there was such a surgery that could suture the bile duct open (as previously mentioned above). I assume that when my attacks start getting more frequent and painful then it will be time for a stent.  I just hate the thought of repeat procedures.  I wish there was a more prolonged cure.

[beebug]

My attacks come on 2 to 3 times a week.  I have no warning as to when they will happen.  I am also having pain/discomfort in my bile duct area. And when the doctor presses down in that area, it is extremely tender.  When my gastro opened it up in October, he found bad bile and all sorts of gunk (his word!) in my bile duct.  And the bile duct opening was very narrow. I am having the very same symptoms now as I was in October, but this time I do have pancreatic pain along with it.  So my gastro thinks the bile duct has narrowed again.  I don't think I would settle for the IBS diagnosis.  Are you having upper right quadrant pain? If so, this is more than likely bile duct related. What are your attacks like?

[krisg]

thanks for the post.
I am having attacks still (since the surgery in Feb 03).  They are infrequent and last about 1-2 hours.  The last attack I had I went to the dr. 4 hours later and told him to test my liver enzymes just to check.  All was fine.  The gastro. dr. in town said that my attacks now are IBS since I don't have the elevated liver enzymes.  I hate when they say that!! I was told they would put a stent in when my attacks consisted of elevated liver enzymes again!  Are you getting frequent attacks again, and is that why they are doing another ERCP?
thanks Kris

[beebug]

Hi Kristin,

My bile duct problems came back within 6 months.  My gastro is doing another ERCP on me July 24th.  My liver enzymes were not elevated, but I am having terrible attacks that include pancreatic pain.  My gastro is considering putting in a stent next week.  Hope this helps.

Beebug

[krisg]

If symptoms return after a biliary sphincterotomy (say 6 months or more).  will a specialist usually recommend another ERCP or surgery?  One more question please,  If problems start again, do the liver enzymes need to be elavated for consideration of ERCP or surgery to open the bile duct??
Thank you for your time.

[Kevin Pho, MD]

Hello - thanks for asking your question.

Surgeon has kindly addressed the more salient questions that you had.  Here are some additional thoughts.

Ductal spasm is possible - however the best test would be a repeat ERCP.  

Pancreatitis is a known complication of sphincterotomy - make sure that the amylase and lipase are within normal limits before dismissing it with a normal CT scan.

I agree with the consult to repeat the ERCP and manometry.  Consider a surgical procedure if the sphincterotomy failed - studies show that surgery has a 50 to 60 percent success rate in alleviating biliary pain and/or pancreatitis.  

Another consideration would be botulinum toxin injection - this is currently in the investigational stage and may be discussed with the specialist.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[no where to turn to]

My father died of pancreas cancer, although for years he suffered with back bain and left leg.He did drop some weight and had alot of vomiting. One morning he woke up jaundice. For several days they could not tell us what was wrong. They did CT's and many other test and could not find what was wrong.Blood work pointed to cancer of some type. It took surgery to fine a tumor behind his pancreas up against his spine. Sometimes the body puzzles even the best.Just don't give up. I will pray for your family.

[eskimo]

thank you for your comments.  as you might imagine, we were very disappointed with this last episode, having had the sphincterotomy in late april.  his specialist here said that seems too recent for it to have scarred down.  he said had it been 8 months instead of 8 weeks, he might think that is what has
happened.  his liver function tests are all normal. both his regular specialist and the specialist who was on call at the hospital over the weekend made a strong point of telling us that the ERCP is a very evasive test and shouldn't be done unless there is no other option.  we had asked why they didn't just do the ERCP to see what has happened since the sphincterotomy.  when we meet with the specialist again on the 15th, we will ask that he consult w/the doctor at v.m. in seattle who did the procedure. the specialist here is very nice and has absolutely no problem with consulting with the dr at virginia mason.  we are in alaska and although they do the ERCP tests here, they don't have the equipment to measure the pressure.  i often wonder if the root of this problem doesn't go back to his fall in march of 2001.  it just seems like that is when he started losing his appetite and losing weight, etc.  although it was a year from the
fall before he had his first pancreatitis attack. the doctors don't think the fall had anything to do with it, but i just have a feeling about it.  maybe just a coincidence. any thoughts on that? since the ct scan of the pancreas came back fine, do you see any point of doing the endoscopic ultrasound of the pancreas?
thank you.

[beebug]

The surgery would indeed be my last resort.  I do have one more question. I had a laparoscopic cholecystectomy about 14 years ago.  Could this bile duct stricture in any way be related to this surgery that many years after?  I am trying to figure out what caused all of this in the first place. It certainly isn't a pleasant thing!

[surgeon]

Nothing is perfect: problems can happen with any procedure. However, the surgical approach opens the sphincter much wider, because it's done under direct vision, and it sutures it open. The endoscopic approach burns it open, and needs to stop short for fear of inadvertently going out the back side and causing a leak. But, as I said, the surgical approach is a significantly bigger deal.

[beebug]

Thanks for your comments.  Why is the surgery more durable than the ERCP? And is the surgery a one time fix, or could the stricture happen again after surgery?

[beebug]

I had an ERCP to correct a bile duct stricture in October of 2002.  Now I am having the same symptoms and am to go to my gastroenterology to scheduled another ERCP on July 14th.  Is it unusual for the stricture to happen again within 6 months?  If it is another stricture, what are my options?  Would appreciate very much any help you can give me.

Beebug

[surgeon]

It's possible for the duct to re-stricture after endoscopic sphincterotomy. At some point, repeat ERCP might be needed: if re-strictured, surgical sphincteroplasty would be a consideration. I assume his liver tests were ok with the latest episode? If not, I'd think he might already have had the repeat ERCP. The people at VM are about as experienced as any with these sorts of problems. Unfortunately, there's still a lot we don't know about bile duct physiology -- specifically how reliable and meaningful are the pressures measured at any given time.

[surgeon]

It can happen. If that's what's going on, the options are to have it opened again with ERCP, or to have a surgical procedure. The former is much simpler; the latter is more durable.