How do we live with this?

[1jrl9991]

My husband used to be a 42 year old healthy male until last Dec. when we came home from the Dominican Republic on 12/9 and he had an attack which was diagnosed to have sludge in the gallbladder.  They removed the gallbladder on 12/11.  A week after the surgery he had another attack so on 12/20 they did an endscopy incision to the sphincter muscle to open things up so any residual stones/sludge would pass through.  After that he had an attack in Las Vegas on 2/21, attack in Las Vegas 6/8, attack in Minneapolis on 6/25, attack at home in Seattle 8/9 & 10 which all landed us in the hospital to dope him up until pain lessened and lipaise/blood work came down. He was given a pill to put under the tongue to relax the sphincter musle (maybe) and some vicaden for the pain.  This did seem to help a bit when the attacks came on.  On 8/26 he had an ERCP with a stent put in, a biopsy for auto immune pancreatitis followed that evening with another attack.  He came home with more pain and had another attack on 9/4.  After the ERCP etc., the biopsy came back negative but he daily lives with pain now maybe due to the stent, is down fro 150 to 130, is now digesting food sometimes with Pangestyme EC before every meal or snack and has no energy.  After the ERCP he became extremely depressed and thought he might have Pancreatic Cancer.  We are scheduled at Virgina Mason on 9/25 for an endoscopy ultrasound to look for tumors as the bile duct is 3 time larger than it should be.  If no tumor/s, the doctor has suggested to go in again to remove the stent (bile duct?) and put another in (pancreatic duct?) I think.  Please give us any suggestions you might have.  We don't feel much security in living every day with no answers and pain 24/7.  Thanks so much. James and Tawni

[margypops]

Possibly you will get more answers to youer question if you put it onto the Doctor Forum.

[Fuzzz]

I'm so sorry to hear your husband has had so many complications after gallbladder surgery.  I just had mine out 2 weeks ago.  My mother has a friend who is a nurse, and she had a terrible time with pancreatitis after her cholecystectomy.  She was in a lot of pain and extremely sick and stayed in the hospital a long time.  I think she had to have ERCP, but I didn't hear about a stent having to be placed, but my mother didn't pass on a lot of details.  

I just know that pancreatitis can happen after gallbladder surgery, and it is one of the most painful conditions one can have.  I hope they do something to help your husband soon.  Maybe the stent is blocked or out of position or something.  I will pray for him.

[CalGal]

James and Tawni, I'm sorry to hear what's happening. This type of problem can be a real bear to try to bring under control, but you and your husband need to keep plugging away to find the best care you can - and doctors experienced in the treatment of postcholecystectomy problems.

Part of what he may be facing is SOD, sphincter of Oddi dysfunction. It's typically described as 'spasms' of the bile duct or the sphincter, and although it's hard to believe that muscular spams of that little tube - the bile duct - can lead to such intense pain, that's exactly what happens. And the only way to find out if that's what the problem is, is to do the ERCP with manometry. If the pressure reading are high, then - and only then - is the time the sphincter should be cut. So my first question is, did they do pressure readings before they cut the muscle? Have they ever done pressure readings?

What meds have they tried for your husband to try to tamp down the discomfort? If they used narcotic-based meds, and those pressures are high, that's not the right thing to do. Narcotic meds (most of them) end up raising the ductal pressures. So care has to be taken in what meds are given - and in what anesthetic agents are used during any form of treatment. That should be a big concern. If your doc can't tell you that he's using 'x' meds during anesthsia, then find another doc who understands the problem.

There are some specific calcium channel blockers and other drugs like nitroglycerin that may cut the spasms. They don't work on everyone, but it's worth checking out.

Before they go into the duct again, please get some very straight answers from the docs. That duct can't take many 'entry' tries, and the dye that's used - as good as it is - carries  risks of its own.

In the meantime, you and your husband need to learn as much about the anatomy of the liver and bile ducts and the pancreas as you can. You need to be able to follow the medical terminology and wend your way through the muck that may be thrown your way as you try to find an answer to this problem. It means the both of you have to be strong, and you may have to question the doc's judgement. You NEED to ask questions and you have to be able to evaluate the answers to separate fact from ficition. This is NOT an easy problem to handle - I hate to say that but you need honesty.

The bile duct could be enlarged from long-term back up of bile which could have happened without your husband realizing it. It can happen, but not often. Yes, it could also mean that something is wrong inside that duct, but I would hope that they looked around in the previous ERCP's. Make sure you get the doc's reports and the lab reports and the surgery reports and read them. You need to know what's in that wording so that you can compare if necessary between now and then.

If you need help with wording and terminology, ask. Someone on the boards should be able to help you.

[CalGal]

Here's a link that gives an overview of the condition (SOD): http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=3&disease=12&lang_id=1