Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Hi Cheryl, Iam going in for my first ERCP to look for possible PSC. My liver biopsy and ultrasound came back normal, however my ALK/PHOS and GGT are still elevated, so my doctor thought it best to do the final test. If this comes back clear...I honestly dont have any idea what else it could be. GGT elevations alone can mean many things, its when it is combined with the ALK/PHOS that there could be a bile duct connection. I hope to hear from you more often and I think I will check out the PSC site in egroups. Andi > > > Hi, Andi > > > > > > I was diagnosed with PSC about 9 years ago. Let me know if you > > have any > > > specific > > > questions. > > > > > > Ann > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Hey Andi, I ran the gambit of seeing many doctors for my constant fatigue and elevated liver enzymes, but it was finally a gastroenterologist that diagnosed the PSC. The first gastroenterologist did a liver biopsy and found nothing, but did diagnose the Crohn's. My symptoms with Crohn's are minor compared to most, so it took awhile. It was after this doctor retired and referred me to my current one, who is a hepatologist as well. He wasn't satisfied with the previous doc's findings and didn't like those high liver enzymes, so he ordered an ERCP. The ERCP was painless, and I received a drug (forget what it's called) that makes you forget all that took place. Pretty cool. You are fully awake during the procedure so that you can assist, like turning your body in different directions as instructed. The worst part is the crummy stuff you have to drink the night before to cleanse your intestines out (I could be remembering incorrectly, as I know I drank the stuff for colonoscopies, but think I drank it for the ERCP as well). After the ERCP, they like to keep you for a few hours, some stay overnight. Something like 3% of the population get pancreatitis after an ERCP. By the sounds of things on the PSC support message board, it's more like in the high 90% area. I got it, and the only way to get rid of it is to fast, so they hook you up to an IV...no problemo. Otherwise, it can be pretty painful if you eat. This should get you diagnosed properly. I have had two ERCPs, and last year had an MRCP...a bit less invasive than ERCP...it's like an MRI, and you don't have to drink all that crud. I know that my PSC was caught at it's earliest stages because I used to be a regular blood donor, and so I know when my liver enzymes went up. Most people don't know because PSC can be silent with symptoms for awhile. My only symptom was the major fatigue, which has gotten worse. When is your ERCP scheduled? Where are you from? I'm in Charlotte, NC. Having a good doctor is extremely important...especially for diagnosis. If you aren't diagnosed, try to find a better doctor that comes highly recommended. You could ask others at the PSC site for those who live nearby. Hope all goes well. Happy New Year! I hope that you are not diagnosed with PSC, but also realize it is a great relief just to get properly diagnosed so you know what you're dealing with. Cheryl [ ] Re: PSC/Cheryl > Hi Cheryl, > > Iam going in for my first ERCP to look for possible PSC. My liver > biopsy and ultrasound came back normal, however my ALK/PHOS and GGT > are still elevated, so my doctor thought it best to do the final > test. If this comes back clear...I honestly dont have any idea what > else it could be. GGT elevations alone can mean many things, its when > it is combined with the ALK/PHOS that there could be a bile duct > connection. I hope to hear from you more often and I think I will > check out the PSC site in egroups. > > Andi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Cheryl, My main symptom is also fatigue. The doctors I saw in the VA here in Palo Alto, California just brushed off my elevated enzymes. I complained enough and they finally(after 5 years)sent me to a GI. The liver biopsy and ultrasound came back normal. I dont know if I have UC or Crohns. I have not had any loose stools or blood in my stool. So I assume its negative. I do have a good doctor now. He is not in the VA system. In a matter of two months he was able to do more for me than the VA did in 5 years. He recommended that we do the ERCP. I do trust him. He is one of the only GI/HEPS in town, so he does the majority of ERCPs endoscopies, liver biopsies and colonoscopies around here. Concerning pancreatitis. Yes I was worried about that. Does that have to do with irritation of the pancreatic duct?. Did you still develop pancreatitis sporadically after your first ERCP was done, not in relation to the actual ERCPs?. You mentioned that you were put on an IV and had to fast. Why was that?. Forgive me for asking all these questions. Iam just curious about the proceadure and what possible complications I may have to deal with afterwards. I have just joined PSC support so I will learn a lot more Iam sure. Thanks for replying to my posts. Wishing you a peaceful New Years Day Andi > Hey Andi, > > I ran the gambit of seeing many doctors for my constant fatigue and elevated > liver enzymes, but it was finally a gastroenterologist that diagnosed the > PSC. The first gastroenterologist did a liver biopsy and found nothing, but > did diagnose the Crohn's. My symptoms with Crohn's are minor compared to > most, so it took awhile. It was after this doctor retired and referred me > to my current one, who is a hepatologist as well. He wasn't satisfied with > the previous doc's findings and didn't like those high liver enzymes, so he > ordered an ERCP. The ERCP was painless, and I received a drug (forget what > it's called) that makes you forget all that took place. Pretty cool. You > are fully awake during the procedure so that you can assist, like turning > your body in different directions as instructed. The worst part is the > crummy stuff you have to drink the night before to cleanse your intestines > out (I could be remembering incorrectly, as I know I drank the stuff for > colonoscopies, but think I drank it for the ERCP as well). After the ERCP, > they like to keep you for a few hours, some stay overnight. Something like > 3% of the population get pancreatitis after an ERCP. By the sounds of > things on the PSC support message board, it's more like in the high 90% > area. I got it, and the only way to get rid of it is to fast, so they hook > you up to an IV...no problemo. Otherwise, it can be pretty painful if you > eat. This should get you diagnosed properly. I have had two ERCPs, and > last year had an MRCP...a bit less invasive than ERCP...it's like an MRI, > and you don't have to drink all that crud. I know that my PSC was caught at > it's earliest stages because I used to be a regular blood donor, and so I > know when my liver enzymes went up. Most people don't know because PSC can > be silent with symptoms for awhile. My only symptom was the major fatigue, > which has gotten worse. When is your ERCP scheduled? Where are you from? > I'm in Charlotte, NC. Having a good doctor is extremely > important...especially for diagnosis. If you aren't diagnosed, try to find > a better doctor that comes highly recommended. You could ask others at the > PSC site for those who live nearby. Hope all goes well. Happy New Year! I > hope that you are not diagnosed with PSC, but also realize it is a great > relief just to get properly diagnosed so you know what you're dealing with. > > Cheryl > > [ ] Re: PSC/Cheryl > > > > Hi Cheryl, > > > > Iam going in for my first ERCP to look for possible PSC. My liver > > biopsy and ultrasound came back normal, however my ALK/PHOS and GGT > > are still elevated, so my doctor thought it best to do the final > > test. If this comes back clear...I honestly dont have any idea what > > else it could be. GGT elevations alone can mean many things, its when > > it is combined with the ALK/PHOS that there could be a bile duct > > connection. I hope to hear from you more often and I think I will > > check out the PSC site in egroups. > > > > Andi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Andi, Glad you also joined the PSC group. I don't want it to scare you though since you haven't been diagnosed yet. The reason for the pancreatitis is that it is so close to the bile ducts that get checked. Some people have reported the ERCP as being painful, but I tend to believe they were further along with the disease than I was, and their bile ducts were more narrow and strictured. The reason for the fast is that's the only way to calm the inflammation of the pancreas. That's why you can't have anything other than water for a day or so. No big deal, as they keep the fluids in you with the IV and check on you frequently. I don't recall any misery on my part. Just forced to stay in the hospital...a bit frustrated is all. I never had any recurrence of pancreatitis afterward. When is your ERCP scheduled? Hope I didn't make it sound too confusing. Cheryl [ ] Re: PSC/Cheryl > Cheryl, > > My main symptom is also fatigue. The doctors I saw in the VA here in > Palo Alto, California just brushed off my elevated enzymes. I > complained enough and they finally(after 5 years)sent me to a GI. The > liver biopsy and ultrasound came back normal. I dont know if I have > UC or Crohns. I have not had any loose stools or blood in my stool. > So I assume its negative. > > I do have a good doctor now. He is not in the VA system. In a matter > of two months he was able to do more for me than the VA did in 5 > years. He recommended that we do the ERCP. I do trust him. He is one > of the only GI/HEPS in town, so he does the majority of ERCPs > endoscopies, liver biopsies and colonoscopies around here. > > Concerning pancreatitis. Yes I was worried about that. Does that have > to do with irritation of the pancreatic duct?. Did you still develop > pancreatitis sporadically after your first ERCP was done, not in > relation to the actual ERCPs?. You mentioned that you were put on an > IV and had to fast. Why was that?. Forgive me for asking all these > questions. Iam just curious about the proceadure and what possible > complications I may have to deal with afterwards. > > I have just joined PSC support so I will learn a lot more Iam sure. > Thanks for replying to my posts. > > Wishing you a peaceful New Years Day > > Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Hello.. Could I please get instructions to the PSC site.. I live in Illinois and I found out a month ago that I have Cirrohsis.. And non-alcoholic steadohepatitis.. But my doctors are not giving me any meds for it.. Just told me to lose weight.. But something seems to be telling me that I should be doing something else.. Hope all of you had a Very Safe and Meaningful New Year!!! Hugs, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Hi Deb. As far as I know you don't take any meds for Steato Hep. I have had a liver tx and just found out in October that I have Steato Hep. My doc's told me to lose weight. I looked it up on the Internet to figure out what it was exactly and the info I found also said treatment is losing weight. I am no doc, just thought I would give my two cents worth. Take care, Gail Re: [ ] Re: PSC/Cheryl Hello.. Could I please get instructions to the PSC site.. I live in Illinois and I found out a month ago that I have Cirrohsis.. And non-alcoholic steadohepatitis.. But my doctors are not giving me any meds for it.. Just told me to lose weight.. But something seems to be telling me that I should be doing something else.. Hope all of you had a Very Safe and Meaningful New Year!!! Hugs,Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Deb.... there is no treatment per se for cirrhosis...once its gone its gone....they mainly try to treat the cause of the cirrhosis..in the case of fatty liver- NASH -the treatment is diet and exercise. I posted on this last week or so. Please take care of yourself and I hope you have a vey good year also. Jerry p.S. ... if your cirrhosis progresess they will treat variceal bleeding, ascites, and possible encephalopathy but there is no cure nor reversal. Hello.. Could I please get instructions to the PSC site.. I live in Illinois and I found out a month ago that I have Cirrohsis.. And non-alcoholic steadohepatitis.. But my doctors are not giving me any meds for it.. Just told me to lose weight.. But something seems to be telling me that I should be doing something else.. Hope all of you had a Very Safe and Meaningful New Year!!! Hugs, Deb Quote Link to comment Share on other sites More sharing options...
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