After spending most of April (2014) in and out of the Hospital. All started will a gallbladder attack, ended up with a few stents and infections, (not necessarily in that order). I am about to once again talk to a surgeon about getting my gallbladder removed. Just had an appointment with the Dr. that preformed the ERCP's. This was actually the first time I talked to him without being all drugged up, LOL. He went over how my bile ducts where blocked all over the place and what he did to clear them all up. They didn't take my gallbladder before because they where worried about leaving a possible place for bile to leak since the common bile duct was pretty well blocked. So now 4 months later I am feeling ok I guess. still some pressure and occasional pain in my right side. I am going to see if they will remove it without worrying about it leaking or infections, will see.
My husband had success with this procedure and had no bile spill. They did a liver biopsy at the same time since they were poking around in there.good thing to get a problematic gall bladder out I would think… especially with PSC. Our hepatologist did the procedure since a PSC patient has special care needs. Not something for a surgeon with no experience about PSC to do. Sounds like they waited until after your ERCP so your liver could rid itself of the backed up bile first.
Good luck. I know it stinks every time you have to have something else done, but for my husband, this was much easier than the stinking ERCP’s which always seem to be painful afterwards.
Best of luck to you.
HI;
My gallbladder was the first thing to go 20 years ago, a week after my son's birth. It was badly damaged and infected. It wasn't until about 3 months later they diagnosed PSC after I turned jaundiced and my blood work showed elevated liver enzymes. They did a ERCP and confirmed it. I agree with Glass Flower. Your gallbladder should be removed by surgeon experienced in PCS. Good luck with that.
I have been told that my gall bladder can’t be removed. Six consultants, four surgeons, gastroenterologist, and primary care physician. I just assumed the gall bladder was scarred in and they could not get to it. The first surgeon was the scope man. He told me if my pain gets bad enough he can go in and open one of the ducts to give me relief. As I have been reading and getting educated I have come to learn. Stents can be placed in the ducts. That removing the gall bladder can cause bile leakage. That is probably why mine has not been removed. I knew my gastro Dr. Was doing regular blood tests but was not aware they played a significant part in the liver function. I only was aware, that if the liver enzymes elevated or decreased, that this is what the disease diagnosis was based on. I have been told PSC can lead to cancer of different organs including, gallbladder, pancreas and liver. That PSC can affect my kidneys. I have a mass on my liver that will be MRIed in September. Now I have been asked by this site, have you been diagnosed with PSC or is it suspected? This made me think. Is my bad gallbladder the cause of my elevated enzymes? BUT the surgeon and gastroenterologist have both confirmed through MRI that the bile ducts are completely deteriorated. Where am I? Confused to say the least!!! I would like to read some ones full story. Someone who has the knowledge of what all the blood tests represent and all other pertinent info. So,the next time I visit my specialist I will have the information I need to ask the pertinent questions. I am one who strongly believes that all patients need to be told the whole story. After all it is my body. Stephen if you read this perhaps as the expert you can shed some light on my confusion or direct me to a story where someone has explained this disease in detail!!! Thanks.
Talked to the Surgeon on Monday, He is going to remove my gallbladder. He did not seem concerned at all about everything that I have going on. While he is in there, he is also going to do a Liver biopsy and a cholangiogram of my bile ducts. As of right now all of this fun will be on September 10th. Hope I have been having lots of right side feelings of pressure and some pain recently, hope that all behaves for a few more weeks.
I started out with a diagnosis of Ulcerative Colitis in 95. About 2 years later my liver bood tests where really high, so my Dr. did a liver biopsy and from there determined that I had PCS, (before this he had also said that I had Autoimmune Hepatitis). Had another Liver biopsy in 2002 and showed slightly worse damage to my bile ducts. Also had an MRI or two during these times. So from then until April 2014 things have been ok, I guess the medication has had some effect. What really drew atention to my PCS again where the Gallbladder attacks that I had been having. I have had them for years and years but not very often. They would so scans and never see anything. Then August 28th of this year I had a really bad one, went to the ER, Rule number one for me, never tell the ER that you are having chest pain, so this trip they did a whole cardio work up and told me my heart was fine and sent me home.....??? April 11th, another massive attack, went back to the ER, this time they did a sonogram, CT scan and then an MRI, Discovered that my Gallbladder was trashed and I was scheduled for surgery the next morning. (by the way, I did get my $100 deductible back from the previouse ER visit since I was addmited the following week for the same thing). So my GI Dr. was contacted and then raised a question about my bile ducts, all of a sudden, no Surgery and I was going to be transferred to another Hospital where they could do an ERCP. To make a long story short, Three stays in that Hospital in April, and 3 ERCP's later I am finally scheduled to have my gallbladder removed. I recently talked to my Dr. whom preformed the ERCP and he went over with me that pretty much all of the major Bile ducts in my liver and outside of my liver where narrow or had blockages. Ever since the last stent came out I am having ever increasing discomfort again on my right side, he said that he would do another ERCP but in the end we decided to wait to see what removing my Gallbladder may do. The surgeon is going to check the ducts anyway while in there. I do have my first appointment with a Hepatologist in November to see what I can expect in the future. I am pretty happy that all of these Dr.'s are at the same practice and Hospital. (AGH in Pittsburgh, also has a great Liver Transplant Program, if that may be in my future). I have been using a program on my PC for the last 9 years or so, called Health Frame Explorer, I have all of my office visits, procedures, Hospital records, blood tests all cataloged and linked in the software. It is a really easy way for me to track my health. I have it populated back to 1995 when most all of this started.
So that is my story and how I got to where I am today. Well the short version.
Sissy said:
I have been told that my gall bladder can't be removed. Six consultants, four surgeons, gastroenterologist, and primary care physician. I just assumed the gall bladder was scarred in and they could not get to it. The first surgeon was the scope man. He told me if my pain gets bad enough he can go in and open one of the ducts to give me relief. As I have been reading and getting educated I have come to learn. Stents can be placed in the ducts. That removing the gall bladder can cause bile leakage. That is probably why mine has not been removed. I knew my gastro Dr. Was doing regular blood tests but was not aware they played a significant part in the liver function. I only was aware, that if the liver enzymes elevated or decreased, that this is what the disease diagnosis was based on. I have been told PSC can lead to cancer of different organs including, gallbladder, pancreas and liver. That PSC can affect my kidneys. I have a mass on my liver that will be MRIed in September. Now I have been asked by this site, have you been diagnosed with PSC or is it suspected? This made me think. Is my bad gallbladder the cause of my elevated enzymes? BUT the surgeon and gastroenterologist have both confirmed through MRI that the bile ducts are completely deteriorated. Where am I? Confused to say the least!!! I would like to read some ones full story. Someone who has the knowledge of what all the blood tests represent and all other pertinent info. So,the next time I visit my specialist I will have the information I need to ask the pertinent questions. I am one who strongly believes that all patients need to be told the whole story. After all it is my body. Stephen if you read this perhaps as the expert you can shed some light on my confusion or direct me to a story where someone has explained this disease in detail!!! Thanks.
Yes please let us know how you are doing. You seem to know what you are doing. I was diagnosed this year I believe I’m in stage 4 and I’m not sure what to do.
Meme what are your symptoms that constitute level four?
Before I was diagnosed with PSC in 1995, I had a huge gallbladder attack right after the birth of my son. I thought I was dying and my son was 2 days old! My gallbladder was removed. Then 3 months later my liver enzymes were abnormally high. A couple of months after that I turned jaundiced, had ERCP and was diagnosed with PSC. But I have never been told that the removal of my gallbladder would cause any leaking of bile. I now have an enlarged spleen and moderate cirrhoris of the liver. I still have no varices and no fluid in the abdomen. But I was also diagnosed with Systemic Lupus in 2006. Good luck with your surgery.
Had my gallbladder or yesterday morning, along with a liver biopsy and am umbilical hernia fixed.
I was awhile waking up again. Came home around 3:30. Had some pain meds at 6:00. Tried to lay down at 10:00. Hurt so bad had to get back up. So pain meds every 6 hrs amd its now it’s 5:40 am trying to get some sleep in my chair. Right side still really hurts
Mah, I hope your recovery goes well and quicker for you.
Hi everyone,
I was told by my hepatologist that removing gallbladder can accelerate the progression of PSC. I never asked why, maybe I will remember to ask on my next appointment. Does anyone know if bad gallbladder surgery can cause PSC? .
Thank You,
I am due have ERCP scared stiff. For the people who went through ERCP can you please shed some light on the aftermath of the procedure.
Meme said:
Hi everyone,
I was told by my hepatologist that removing gallbladder can accelerate the progression of PSC. I never asked why, maybe I will remember to ask on my next appointment. Does anyone know if bad gallbladder surgery can cause PSC? .
Thank You,
Hi Meme,
I have had 5 of them so far, with nothing worse than a sore throat afterwards. I was told there is a 1 in 20 risk of pacreatitis, but have been lucky so far. With a skilled doctor the risk is probably smaller.
I was always under an anestethic. It is presumably a bit unpleasant otherwise. But I never knew a thing what they did to me. Can honestly say that I do not fear the next one (except possibly to know the results of the brush cytology!)
Really hope your experience will be no worse than mine!
Mats
Meme said:
I am due have ERCP scared stiff. For the people who went through ERCP can you please shed some light on the aftermath of the procedure.
Meme said:Hi everyone,
I was told by my hepatologist that removing gallbladder can accelerate the progression of PSC. I never asked why, maybe I will remember to ask on my next appointment. Does anyone know if bad gallbladder surgery can cause PSC? .
Thank You,
Meme,
I agree with Mats. You are anaesthetized at the time, so please do not worry about that. He is right about the sore throat afterwards-mine was minor and did not last too long.
Throat lozenges/life savers/mints will help if you want.
As far as recovery period, I was already hospitalized for my first ERCP. Within 2 hours, the doc was telling me that I had something called PSC.
For the second time, I went straight to the endoscopy lab. But I do not recall any specific recovery time.
Jeff
I was told my pancreas has two smaller ducts rather than the normal one large one which puts me at a higher risk for pancreatitis but is sounds like I should not worry too much.
Thanks Jeff and Mats.!
Meme,
I have had pancreatitis three times, none were caused by ercp's. My symptoms were: 1. a pain two inches below my sternum that started out like hunger pains, but gradually got worse.The first time the pain got quite bad, the second two times, I knew to get to the ER a lot sooner than I did the first. 2. The pain radiated to my back. 3. Twice that area below my sternum was swollen; once it was not.
So if you have these after your ercp, get to the ER asap. I think there a several other symptoms.
But once the ER docs stopped the pain, I had a five day vacation in the hospital twice, and a four day stay the last. Each stay was without drama, except for the starvation diet the first two days and the vampires wanting blood at 3:00 A.M.. The good news was that with each stay, I lost 5-6 pounds.
I have read differing risk percentages, but there is always a risk of it when an ercp is done. As long as you can get to an ER quickly, you're going to be in good shape.
Jeff
Meme said:
I was told my pancreas has two smaller ducts rather than the normal one large one which puts me at a higher risk for pancreatitis but is sounds like I should not worry too much.
Thanks Jeff and Mats.!