Such gall, no bladder
June 22, 2009 1:31 PM Subscribe
I know YANMMD, but even my mom's various doctors can't seem to answer this question: what causes stones in the pancreatic bile duct?
My Mom is 76 years old and had her gall bladder removed back in 1992. However, in the last six years or so she has had recurrent bouts of pancreatitis. She'll get horrendous pain in the upper abdomen and in her upper back, we'll take her to the ER, they'll run the usual tests while they await her regular doctor (I forget which one of her specialists covers the pancreas). He'll suspect stones in the bile duct of the pancreas, they'll take a picture, and sure enough. They insert a stent and after a few days in the hospital she's sent home. After X amount of time, the doctor orders the stent to be removed. She checks into the hospital, they remove it, and every single time she's doubled over in excrutiating pain less than 24 hours later and rushed to the hospital. Turns out she'd gotten an infection from the removal of the stent.
She swore the last time she was hospitalized for this infection that she'd never have another stent inserted, but recently she's been experiencing similar pains to previous stone scenarios. Her doctor ran the usual tests and told her that she was a "stone factory." I told her to ask the doctor what are the possible causes of the stones - is it something dietary? She hates to ask him too many questions because he has a very pronounced Indian accent and she has trouble understanding him. She thinks it's rude to keep asking him to repeat himself. Diet-wise she doesn't seem to eat very much of anything at all, because so many things seem to cause her pain. When I take her out for breakfast or lunch, she'll have either an English muffin or a cup of chicken noodle soup, nothing more. I don't know what she eats at home except from what she occasionally mentions in emails "I made meatloaf and mashed potatoes for Dad, I just had a scoop of potatoes and a little bit of gravy."
Is there truly no rhyme or reason while bile duct stones happen? Or are the doctors just "humoring" my Mom and not bothering to explain "technical" things because she's over 70 and female? I only present this possibility because two days after she'd returned home from her gall bladder surgery she told me on the phone that she was experiencing shortness of breath. I called her surgeon and he told me that it was most likely post-operative stress; that a lot of older patients, particularly females, experience it. But when I visited her the next day and saw that she couldn't walk across the kitchen without grabbing a chair and panting, I took her to the ER of a different hospital, where they discovered blood clots on her lung.
During her last hospital stay for the post-stent removal infection, they ran an additional battery of tests and her doctor announced that there was no cancer in the pancreas (none of us had been told they were checking for such a thing). So any ideas as to what causes this frequency of bile duct stones? It particularly worries me because right now Mom seems to be willing to endure the pain of the stones rather than go in for another stent and the eventual removal, infection, pain, hospital stay, etc.
My Mom is 76 years old and had her gall bladder removed back in 1992. However, in the last six years or so she has had recurrent bouts of pancreatitis. She'll get horrendous pain in the upper abdomen and in her upper back, we'll take her to the ER, they'll run the usual tests while they await her regular doctor (I forget which one of her specialists covers the pancreas). He'll suspect stones in the bile duct of the pancreas, they'll take a picture, and sure enough. They insert a stent and after a few days in the hospital she's sent home. After X amount of time, the doctor orders the stent to be removed. She checks into the hospital, they remove it, and every single time she's doubled over in excrutiating pain less than 24 hours later and rushed to the hospital. Turns out she'd gotten an infection from the removal of the stent.
She swore the last time she was hospitalized for this infection that she'd never have another stent inserted, but recently she's been experiencing similar pains to previous stone scenarios. Her doctor ran the usual tests and told her that she was a "stone factory." I told her to ask the doctor what are the possible causes of the stones - is it something dietary? She hates to ask him too many questions because he has a very pronounced Indian accent and she has trouble understanding him. She thinks it's rude to keep asking him to repeat himself. Diet-wise she doesn't seem to eat very much of anything at all, because so many things seem to cause her pain. When I take her out for breakfast or lunch, she'll have either an English muffin or a cup of chicken noodle soup, nothing more. I don't know what she eats at home except from what she occasionally mentions in emails "I made meatloaf and mashed potatoes for Dad, I just had a scoop of potatoes and a little bit of gravy."
Is there truly no rhyme or reason while bile duct stones happen? Or are the doctors just "humoring" my Mom and not bothering to explain "technical" things because she's over 70 and female? I only present this possibility because two days after she'd returned home from her gall bladder surgery she told me on the phone that she was experiencing shortness of breath. I called her surgeon and he told me that it was most likely post-operative stress; that a lot of older patients, particularly females, experience it. But when I visited her the next day and saw that she couldn't walk across the kitchen without grabbing a chair and panting, I took her to the ER of a different hospital, where they discovered blood clots on her lung.
During her last hospital stay for the post-stent removal infection, they ran an additional battery of tests and her doctor announced that there was no cancer in the pancreas (none of us had been told they were checking for such a thing). So any ideas as to what causes this frequency of bile duct stones? It particularly worries me because right now Mom seems to be willing to endure the pain of the stones rather than go in for another stent and the eventual removal, infection, pain, hospital stay, etc.
IANAD(yet), but it sounds like postcholecystectomy syndrome. Not sure what might be causing it flare up >15 years later, but googling the term might help.
posted by greatgefilte at 4:08 PM on June 22, 2009
posted by greatgefilte at 4:08 PM on June 22, 2009
IANAD, I know nothing about your mother, but recently I was reading up on oxalic acid, because I wanted to know if I could eat the wild wood sorrel growing in my garden (which is a species of oxalis). Many foods contain this, and should be avoided if you are prone to the sorts of issues your mother is facing. Wikipedia (scroll down to "Occurrence in nature). So is her diet high in any of these foods?
posted by nax at 5:29 PM on June 22, 2009
posted by nax at 5:29 PM on June 22, 2009
She hates to ask him too many questions because he has a very pronounced Indian accent and she has trouble understanding him. She thinks it's rude to keep asking him to repeat himself.
Well this is a *significant* problem. Your mom should ask her doctor to keep repeating himself as much as possible until she understands what he is trying to say. She can very easily and politely say "I'm sorry, I'm having trouble understanding your accent. Could you please speak slower?" I assure you, he will NOT be offended at this (if he is, get a new doctor).
posted by ruwan at 6:23 PM on June 22, 2009 [1 favorite]
Well this is a *significant* problem. Your mom should ask her doctor to keep repeating himself as much as possible until she understands what he is trying to say. She can very easily and politely say "I'm sorry, I'm having trouble understanding your accent. Could you please speak slower?" I assure you, he will NOT be offended at this (if he is, get a new doctor).
posted by ruwan at 6:23 PM on June 22, 2009 [1 favorite]
Best answer: Several things. I agree with you that their are certain aspects of what you describe that don't make good sense to me as a practicing physician. These may reflect miscommunications that could be resolved by a simple phone call between you and your mother's doctors (with her permission of course). What is more glaring to me is this:
I called her surgeon and he told me that it was most likely post-operative stress; that a lot of older patients, particularly females, experience it. But when I visited her the next day and saw that she couldn't walk across the kitchen without grabbing a chair and panting, I took her to the ER of a different hospital, where they discovered blood clots on her lung.
This to me is concerning for unacceptable medical care. Prolonged immobilization (hospitalization) is a significant risk factor for blood clots, and any practicing physician knows that. Trouble breathing in general isn't something any doctor should be blowing off over the phone, particularly after a recent hospitalization.
Please get a second opinion from a gastroenterologist experienced in managing chronic and recurrent pancreatitis.
Also, if it's true that she really needs stents for these episodes (implying that there is some sort of problem with drainage of fluid from her biliary tree) it is essential that she seeks care when her symptoms arise. This isn't one of those things that people can just tough out. If her biliary tree becomes obstructed it places her at risk for very serious, life-threatening complications that can progress quite rapidly without appropriate care.
posted by drpynchon at 8:15 AM on June 23, 2009 [1 favorite]
I called her surgeon and he told me that it was most likely post-operative stress; that a lot of older patients, particularly females, experience it. But when I visited her the next day and saw that she couldn't walk across the kitchen without grabbing a chair and panting, I took her to the ER of a different hospital, where they discovered blood clots on her lung.
This to me is concerning for unacceptable medical care. Prolonged immobilization (hospitalization) is a significant risk factor for blood clots, and any practicing physician knows that. Trouble breathing in general isn't something any doctor should be blowing off over the phone, particularly after a recent hospitalization.
Please get a second opinion from a gastroenterologist experienced in managing chronic and recurrent pancreatitis.
Also, if it's true that she really needs stents for these episodes (implying that there is some sort of problem with drainage of fluid from her biliary tree) it is essential that she seeks care when her symptoms arise. This isn't one of those things that people can just tough out. If her biliary tree becomes obstructed it places her at risk for very serious, life-threatening complications that can progress quite rapidly without appropriate care.
posted by drpynchon at 8:15 AM on June 23, 2009 [1 favorite]
Response by poster: This to me is concerning for unacceptable medical care. Prolonged immobilization (hospitalization) is a significant risk factor for blood clots, and any practicing physician knows that. Trouble breathing in general isn't something any doctor should be blowing off over the phone, particularly after a recent hospitalization.
We later found out that one of the prescriptions she'd been taking (a hormone replacement, I think?) caused the blood clots after surgery. I wrote a letter to the Chief of Staff of the other hospital to tell them about the surgeon's indifference and got a generic "thanks for your concern, we'll look into it" response.
She is under the care of a gastroenterologist for her pancreatitis, and he's the one that called her a "stone factory." (If we wanted to get a second opinion, could she just take copies of her test reports and the various pictures they took of her insides to the second doctor, or would he start from square one with all the tests?) I asked him during one of her hospitalizations what causes the stones, and he said some people "just" produce them. Apparently he was checking different avenues, because we hadn't known they'd checked for cancer until after he gave us the "all clear" report. (I'm guessing he didn't want to alarm her.) (Although she may have signed something authorizing such a test without knowing it; she was in a lot of pain at the time.) She's had three stents put in her bile duct thus far; why she's adverse to another one is that each time she's had the stent removed, they've sent her home, she felt fine for about eight hours or so, then severe pain came galloping back and we had to rush her back to the ER. Each time the diagnosis was infection from removal of the stent, and she spent three or four additional days in the hospital receiving IV antibiotics. Luckily she has good health insurance, so cost is not a factor, but she's tired of the pain, the inconvenience, leaving Dad home alone, hospital stays in general, etc.
posted by Oriole Adams at 10:52 AM on June 23, 2009
We later found out that one of the prescriptions she'd been taking (a hormone replacement, I think?) caused the blood clots after surgery. I wrote a letter to the Chief of Staff of the other hospital to tell them about the surgeon's indifference and got a generic "thanks for your concern, we'll look into it" response.
She is under the care of a gastroenterologist for her pancreatitis, and he's the one that called her a "stone factory." (If we wanted to get a second opinion, could she just take copies of her test reports and the various pictures they took of her insides to the second doctor, or would he start from square one with all the tests?) I asked him during one of her hospitalizations what causes the stones, and he said some people "just" produce them. Apparently he was checking different avenues, because we hadn't known they'd checked for cancer until after he gave us the "all clear" report. (I'm guessing he didn't want to alarm her.) (Although she may have signed something authorizing such a test without knowing it; she was in a lot of pain at the time.) She's had three stents put in her bile duct thus far; why she's adverse to another one is that each time she's had the stent removed, they've sent her home, she felt fine for about eight hours or so, then severe pain came galloping back and we had to rush her back to the ER. Each time the diagnosis was infection from removal of the stent, and she spent three or four additional days in the hospital receiving IV antibiotics. Luckily she has good health insurance, so cost is not a factor, but she's tired of the pain, the inconvenience, leaving Dad home alone, hospital stays in general, etc.
posted by Oriole Adams at 10:52 AM on June 23, 2009
Yes, she could and she should get copies of all these reports and any accompanying images if available. That is totally within her rights, though she'll have to sign a release for them and at some places they charge a nominal fee for records (where I work I think it's $15).
The cancer thing shouldn't come as a shock. Often obstruction of the biliary tree can be a sign of that so when they go up there with the scope they take brushings of tissue to make sure there aren't atypical cells. That seems pretty standard. In folks who have recurrent pancreatitis what can happen is that over time the episodes of inflammation in the ducts of the pancreas can lead to scarring and what is called strictures (narrowing) of parts of the system. These are areas where the natural plumbing get obstructed in what is a vicious cycle for some patients. Again they are likely to make sure that it really is scarring and not malignant cells in there that are doing this and that's why they brought it up.
Chronic pancreatitis as you have clearly come to realize is one of the more complex and hard to manage problems in medicine, and unfortunately many patients who suffer from it develop histories that ultimately include lots of tests, infections, and sometimes stents and surgeries. It really can be quite harrowing and I feel for you as I have definitely seen lots of other people struggle with this. You should know that in some cases patients do develop definitive resolution over time. Again, I do think the best bet at overcoming this vicious cycle is to find someone for a second opinion, perhaps preferably at an academic center, who really does have lots of experience with pancreaticobiliary disease and has expertise with interpreting MRCP and performing ERCP, endoscopic ultrasound, and stent management. It's no guarantee but that's what I'd do if I were in your shoes.
posted by drpynchon at 11:07 AM on June 23, 2009 [1 favorite]
The cancer thing shouldn't come as a shock. Often obstruction of the biliary tree can be a sign of that so when they go up there with the scope they take brushings of tissue to make sure there aren't atypical cells. That seems pretty standard. In folks who have recurrent pancreatitis what can happen is that over time the episodes of inflammation in the ducts of the pancreas can lead to scarring and what is called strictures (narrowing) of parts of the system. These are areas where the natural plumbing get obstructed in what is a vicious cycle for some patients. Again they are likely to make sure that it really is scarring and not malignant cells in there that are doing this and that's why they brought it up.
Chronic pancreatitis as you have clearly come to realize is one of the more complex and hard to manage problems in medicine, and unfortunately many patients who suffer from it develop histories that ultimately include lots of tests, infections, and sometimes stents and surgeries. It really can be quite harrowing and I feel for you as I have definitely seen lots of other people struggle with this. You should know that in some cases patients do develop definitive resolution over time. Again, I do think the best bet at overcoming this vicious cycle is to find someone for a second opinion, perhaps preferably at an academic center, who really does have lots of experience with pancreaticobiliary disease and has expertise with interpreting MRCP and performing ERCP, endoscopic ultrasound, and stent management. It's no guarantee but that's what I'd do if I were in your shoes.
posted by drpynchon at 11:07 AM on June 23, 2009 [1 favorite]
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posted by Erberus at 2:35 PM on June 22, 2009