Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Beading of the bile ducts is a common finding with PSC. Basically, there's a narrowing, followed by a " ballooning " , followed by a narrowing, etc. The standard " rule of thumb " is that PSC probably started 10 years before any symptoms, so it is an indication of progression, but not a very good one. The endoscopic procedure is probably an ERCP (Endoscopic Retrograde Cholangiopancreatography), the predecessor of MRCP. If they are suggesting an ERCP, the PSC is probably most prominent in the common bile duct, where they can access it (as opposed to ducts within the liver). They will most likely be able to insert a balloon catheter and expand the affected portion of the bile duct. They may insert a stent (small tube) to keep the duct open while it heals to the new diameter. See http://digestive.niddk.nih.gov/ddiseases/pubs/ercp/index.htm for a more thorough explanation. This typically works pretty well. I had my last ERCP in 2001 - I've been symptom free since. Some people require frequent ERCPs, some don't. The most common complication is pancreatitis, a painful inflammation of the pancreas. He should not be released until that is ruled out. In my case, it occurred several hours after the ERCP, and resulted in an additional 4-5 days in the hospital. They really don't know why it happens, and efforts to eliminate that complication have not been very successful. Hope this helps. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Katy Kelley Hi - I just found out today that my son's possible diagnosis of PSC is a reality. There goes that little hope I was cherishing... But he feels fine, he hasn't had any symptoms at all, so now i guess we hope that continues longer rather than shorter time, and that research will develop something, and that i can be tough enough to support him through whatever comes.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Beading of the bile ducts is a common finding with PSC. Basically, there's a narrowing, followed by a " ballooning " , followed by a narrowing, etc. The standard " rule of thumb " is that PSC probably started 10 years before any symptoms, so it is an indication of progression, but not a very good one. The endoscopic procedure is probably an ERCP (Endoscopic Retrograde Cholangiopancreatography), the predecessor of MRCP. If they are suggesting an ERCP, the PSC is probably most prominent in the common bile duct, where they can access it (as opposed to ducts within the liver). They will most likely be able to insert a balloon catheter and expand the affected portion of the bile duct. They may insert a stent (small tube) to keep the duct open while it heals to the new diameter. See http://digestive.niddk.nih.gov/ddiseases/pubs/ercp/index.htm for a more thorough explanation. This typically works pretty well. I had my last ERCP in 2001 - I've been symptom free since. Some people require frequent ERCPs, some don't. The most common complication is pancreatitis, a painful inflammation of the pancreas. He should not be released until that is ruled out. In my case, it occurred several hours after the ERCP, and resulted in an additional 4-5 days in the hospital. They really don't know why it happens, and efforts to eliminate that complication have not been very successful. Hope this helps. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Katy Kelley Hi - I just found out today that my son's possible diagnosis of PSC is a reality. There goes that little hope I was cherishing... But he feels fine, he hasn't had any symptoms at all, so now i guess we hope that continues longer rather than shorter time, and that research will develop something, and that i can be tough enough to support him through whatever comes.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Beading of the bile ducts is a common finding with PSC. Basically, there's a narrowing, followed by a " ballooning " , followed by a narrowing, etc. The standard " rule of thumb " is that PSC probably started 10 years before any symptoms, so it is an indication of progression, but not a very good one. The endoscopic procedure is probably an ERCP (Endoscopic Retrograde Cholangiopancreatography), the predecessor of MRCP. If they are suggesting an ERCP, the PSC is probably most prominent in the common bile duct, where they can access it (as opposed to ducts within the liver). They will most likely be able to insert a balloon catheter and expand the affected portion of the bile duct. They may insert a stent (small tube) to keep the duct open while it heals to the new diameter. See http://digestive.niddk.nih.gov/ddiseases/pubs/ercp/index.htm for a more thorough explanation. This typically works pretty well. I had my last ERCP in 2001 - I've been symptom free since. Some people require frequent ERCPs, some don't. The most common complication is pancreatitis, a painful inflammation of the pancreas. He should not be released until that is ruled out. In my case, it occurred several hours after the ERCP, and resulted in an additional 4-5 days in the hospital. They really don't know why it happens, and efforts to eliminate that complication have not been very successful. Hope this helps. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Katy Kelley Hi - I just found out today that my son's possible diagnosis of PSC is a reality. There goes that little hope I was cherishing... But he feels fine, he hasn't had any symptoms at all, so now i guess we hope that continues longer rather than shorter time, and that research will develop something, and that i can be tough enough to support him through whatever comes.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 It's so good to hear that sometimes something works. The Drs haven't really been a ray of sunshine, and we've only met the liver specialist, Tom Boyer, once. So it's hard to tell if the lack of encouragement is just their standard mode, or if something about my son's case looks esp. bad. I'm pretty twitchy at the moment. I think Drs should be followed around by communicator/counselor/question answerers, so after the Dr leads you out to to the ledge and whisks away, there's someone there to talk you down. I'm kicking myself for going to a lower level of coverage with my district's HMO. I had the highest, verge-of-unaffordable coverage last year and we didn't need it, so I backed it off this year. The only difference is in coverage of hospital stays, so the proposed ECRP could be a problem. I'll just hope for the best, but I'd rather they didn't chance making him sicker while he needs to be finishing his last semester at college. He has to stay well until he graduates and gets a job, or there's no health coverage at all. Yikes. I have more worries than brain cells at the moment, and I suspect I'm not really back to rational yet. Sorry for rambling on. Thanks for the info - I'm making a file! Katy > >Reply-To: >To: < > >Subject: RE: Thanks for relating/Katy >Date: Wed, 30 Aug 2006 05:12:48 -0500 > >Beading of the bile ducts is a common finding with PSC. Basically, there's >a narrowing, followed by a " ballooning " , followed by a narrowing, etc. The >standard " rule of thumb " is that PSC probably started 10 years before any >symptoms, so it is an indication of progression, but not a very good one. > _________________________________________________________________ All-in-one security and maintenance for your PC. Get a free 90-day trial! http://www.windowsonecare.com/trial.aspx?sc_cid=msn_hotmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 It's so good to hear that sometimes something works. The Drs haven't really been a ray of sunshine, and we've only met the liver specialist, Tom Boyer, once. So it's hard to tell if the lack of encouragement is just their standard mode, or if something about my son's case looks esp. bad. I'm pretty twitchy at the moment. I think Drs should be followed around by communicator/counselor/question answerers, so after the Dr leads you out to to the ledge and whisks away, there's someone there to talk you down. I'm kicking myself for going to a lower level of coverage with my district's HMO. I had the highest, verge-of-unaffordable coverage last year and we didn't need it, so I backed it off this year. The only difference is in coverage of hospital stays, so the proposed ECRP could be a problem. I'll just hope for the best, but I'd rather they didn't chance making him sicker while he needs to be finishing his last semester at college. He has to stay well until he graduates and gets a job, or there's no health coverage at all. Yikes. I have more worries than brain cells at the moment, and I suspect I'm not really back to rational yet. Sorry for rambling on. Thanks for the info - I'm making a file! Katy > >Reply-To: >To: < > >Subject: RE: Thanks for relating/Katy >Date: Wed, 30 Aug 2006 05:12:48 -0500 > >Beading of the bile ducts is a common finding with PSC. Basically, there's >a narrowing, followed by a " ballooning " , followed by a narrowing, etc. The >standard " rule of thumb " is that PSC probably started 10 years before any >symptoms, so it is an indication of progression, but not a very good one. > _________________________________________________________________ All-in-one security and maintenance for your PC. Get a free 90-day trial! http://www.windowsonecare.com/trial.aspx?sc_cid=msn_hotmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 It's so good to hear that sometimes something works. The Drs haven't really been a ray of sunshine, and we've only met the liver specialist, Tom Boyer, once. So it's hard to tell if the lack of encouragement is just their standard mode, or if something about my son's case looks esp. bad. I'm pretty twitchy at the moment. I think Drs should be followed around by communicator/counselor/question answerers, so after the Dr leads you out to to the ledge and whisks away, there's someone there to talk you down. I'm kicking myself for going to a lower level of coverage with my district's HMO. I had the highest, verge-of-unaffordable coverage last year and we didn't need it, so I backed it off this year. The only difference is in coverage of hospital stays, so the proposed ECRP could be a problem. I'll just hope for the best, but I'd rather they didn't chance making him sicker while he needs to be finishing his last semester at college. He has to stay well until he graduates and gets a job, or there's no health coverage at all. Yikes. I have more worries than brain cells at the moment, and I suspect I'm not really back to rational yet. Sorry for rambling on. Thanks for the info - I'm making a file! Katy > >Reply-To: >To: < > >Subject: RE: Thanks for relating/Katy >Date: Wed, 30 Aug 2006 05:12:48 -0500 > >Beading of the bile ducts is a common finding with PSC. Basically, there's >a narrowing, followed by a " ballooning " , followed by a narrowing, etc. The >standard " rule of thumb " is that PSC probably started 10 years before any >symptoms, so it is an indication of progression, but not a very good one. > _________________________________________________________________ All-in-one security and maintenance for your PC. Get a free 90-day trial! http://www.windowsonecare.com/trial.aspx?sc_cid=msn_hotmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 10. Re: Thanks for relating/Katy Posted by: " Katy Kelley " inkywretch42@... inkywretch42 Date: Wed Aug 30, 2006 4:43 pm (PDT) The only difference is in coverage of hospital stays, so the proposed ERCP could be a problem. I'll just hope for the best, but I'd rather they didn't chance making him sicker while he needs to be finishing his last semester at college. He has to stay well until he graduates and gets a job, or there's no health coverage at all. Yikes. I have more worries than brain cells at the moment, and I suspect I'm not really back to rational yet. Hi Katy, You and your son do not necessarily have to agree to an ERCP or you may agree to it but after he graduates. You decision should be based on the reasons the doctors have for wanting it done. Many doctors like to do an ERCP for screening and monitoring reasons. This is because many doctors are more familiar with ERCP that MRCP. Also they can take brushings of tissue, which allows them to look for bile duct cancer. However, as Arne told you an ERCP can cause painful and dangerous side effects. In addition to pancreatitis, and ERCP can cause bile duct infections. On the other hand, if your son has symptoms of bile duct blockage that are causing discomfort or health problems, an ERCP may be needed to dilate one or more ducts to improve the flow of bile out of the liver. I urge you to ask your doctor to explain why he is recommending the ERCP and whether or not this procedure is urgent. Please also ask him/her to discuss how the risks balance against the benefits in your son's case. Just because he/she wants to insert a stent or do a dilation does not mean your son needs one before graduation. PSC is tricky, it may be progressing quickly or slowly. There is no way to tell how long your son has had it. My experience is a case in point. When I was first diagnosed I got a diagnostic ERCP that included inserting a stent; 10 days later I was hospitalized with a bile duct infection and needed an emergency ERCP to remove the stent. It is now 6 years since diagnosis and I never got another ERCP. Although the ERCP and MRCP show major strictures in all extrahepatic bile ducts and total destruction of ducts in my left lobe, I am asymptomatic except for fatigue and occasional itching. My alk. phos is elevated but nothing else is. The point is don't assume the worst and don't assume your son needs aggressive intervention such as an ERCP. If your doctor has little experience with PSC I would consider getting a second opinion from a hepatologist who does have such experience. If you let us know where you live, someone in the group may be able to refer you to an experienced, competent doctor. Also, Mayo Clinic, Rochester is the best in the U.S. I wish you and your son all the best for a slowly progressing disease and a successful career. (Sacramento) dx UC and PSC 2001. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Thanks jennifer - I added your info to my ever-expanding file! I'm not sure yet that they'll want to do the ERCP; it was mentioned as a possibility. There wasn't any mention of a stent, I don't think. I'm so glad to hear of your (mostly) lack of symptoms; it gives me hope for Trev. Since the onset of Crohn's in 2001 he's been seeing Dr. Fayed Ghishan, head of pediatrics at Univ. Med. Center. Dr Ghishan referred him to Dr. Boyer, also of UMC. Apparently he's pretty well known as a liver specialist. I think he's supposed to be experienced with PSC. He mentioned Urso but kinda shrugged it off, so that wasn't encouraging. He's not big on encouragement, I think, like a lot of docs. You get just the facts, if you're that lucky. There's a Mayo clinic over in sdale; I was wondering if they're up on the latest. Thanks again, Katy > >Reply-To: >To: >Subject: Thanks for relating/Katy >Date: Thu, 31 Aug 2006 16:22:14 -0700 > > >10. Re: Thanks for relating/Katy > Posted by: " Katy Kelley " inkywretch42@... inkywretch42 > Date: Wed Aug 30, 2006 4:43 pm (PDT) > > >The only difference is in >coverage of hospital stays, so the proposed ERCP could be a problem. I'll >just hope for the best, but I'd rather they didn't chance making him sicker >while he needs to be finishing his last semester at college. He has to >stay >well until he graduates and gets a job, or there's no health coverage at >all. Yikes. I have more worries than brain cells at the moment, and I >suspect I'm not really back to rational yet. > > >Hi Katy, You and your son do not necessarily have to agree to an ERCP or >you may agree to it but after he graduates. You decision should be based >on the reasons the doctors have for wanting it done. > > _________________________________________________________________ All-in-one security and maintenance for your PC. Get a free 90-day trial! http://www.windowsonecare.com/trial.aspx?sc_cid=msn_hotmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Thanks jennifer - I added your info to my ever-expanding file! I'm not sure yet that they'll want to do the ERCP; it was mentioned as a possibility. There wasn't any mention of a stent, I don't think. I'm so glad to hear of your (mostly) lack of symptoms; it gives me hope for Trev. Since the onset of Crohn's in 2001 he's been seeing Dr. Fayed Ghishan, head of pediatrics at Univ. Med. Center. Dr Ghishan referred him to Dr. Boyer, also of UMC. Apparently he's pretty well known as a liver specialist. I think he's supposed to be experienced with PSC. He mentioned Urso but kinda shrugged it off, so that wasn't encouraging. He's not big on encouragement, I think, like a lot of docs. You get just the facts, if you're that lucky. There's a Mayo clinic over in sdale; I was wondering if they're up on the latest. Thanks again, Katy > >Reply-To: >To: >Subject: Thanks for relating/Katy >Date: Thu, 31 Aug 2006 16:22:14 -0700 > > >10. Re: Thanks for relating/Katy > Posted by: " Katy Kelley " inkywretch42@... inkywretch42 > Date: Wed Aug 30, 2006 4:43 pm (PDT) > > >The only difference is in >coverage of hospital stays, so the proposed ERCP could be a problem. I'll >just hope for the best, but I'd rather they didn't chance making him sicker >while he needs to be finishing his last semester at college. He has to >stay >well until he graduates and gets a job, or there's no health coverage at >all. Yikes. I have more worries than brain cells at the moment, and I >suspect I'm not really back to rational yet. > > >Hi Katy, You and your son do not necessarily have to agree to an ERCP or >you may agree to it but after he graduates. You decision should be based >on the reasons the doctors have for wanting it done. > > _________________________________________________________________ All-in-one security and maintenance for your PC. Get a free 90-day trial! http://www.windowsonecare.com/trial.aspx?sc_cid=msn_hotmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Thanks jennifer - I added your info to my ever-expanding file! I'm not sure yet that they'll want to do the ERCP; it was mentioned as a possibility. There wasn't any mention of a stent, I don't think. I'm so glad to hear of your (mostly) lack of symptoms; it gives me hope for Trev. Since the onset of Crohn's in 2001 he's been seeing Dr. Fayed Ghishan, head of pediatrics at Univ. Med. Center. Dr Ghishan referred him to Dr. Boyer, also of UMC. Apparently he's pretty well known as a liver specialist. I think he's supposed to be experienced with PSC. He mentioned Urso but kinda shrugged it off, so that wasn't encouraging. He's not big on encouragement, I think, like a lot of docs. You get just the facts, if you're that lucky. There's a Mayo clinic over in sdale; I was wondering if they're up on the latest. Thanks again, Katy > >Reply-To: >To: >Subject: Thanks for relating/Katy >Date: Thu, 31 Aug 2006 16:22:14 -0700 > > >10. Re: Thanks for relating/Katy > Posted by: " Katy Kelley " inkywretch42@... inkywretch42 > Date: Wed Aug 30, 2006 4:43 pm (PDT) > > >The only difference is in >coverage of hospital stays, so the proposed ERCP could be a problem. I'll >just hope for the best, but I'd rather they didn't chance making him sicker >while he needs to be finishing his last semester at college. He has to >stay >well until he graduates and gets a job, or there's no health coverage at >all. Yikes. I have more worries than brain cells at the moment, and I >suspect I'm not really back to rational yet. > > >Hi Katy, You and your son do not necessarily have to agree to an ERCP or >you may agree to it but after he graduates. You decision should be based >on the reasons the doctors have for wanting it done. > > _________________________________________________________________ All-in-one security and maintenance for your PC. Get a free 90-day trial! http://www.windowsonecare.com/trial.aspx?sc_cid=msn_hotmail Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.