Guest guest Posted March 30, 1999 Report Share Posted March 30, 1999 Larry, I have these ERCP's all the time now...only way to keep that bile duct open these days. At any rate, you might want to ask the doc to change the drugs. I know demerol makes me nauseous, and so does any morphine or morphine-like drug. In '97 they gave me morphine (because I already knew demerol wouldn't work), and I almost had to stay over at the hospital just because of the nausea afterwards; it was terrible. So now they have shifted to some other combination (I can't remember what that is), and I don't get sick. I, too, have a hard time waking up after the procedure. I know that sometimes I can remember coming around before the procedure is finished, and because the tube is down my throat, I want to gag. They have to shoot me up with another batch of drugs so I don't mess up the procedure, and that means that I am much groggier at the end of the procedure. I've just gotten used to it, though, and plan to sleep it off at home. I also find that when I am that groggy, I am also " cranky " about having to wake up to get home (it's an hour's drive back to Manchester NH from Boston). I warn the people who take me about that part. I haven't had many complications from the ERCP, thank goodness....the bandings of the esophageal varices are done by endoscopy, and I have more pain afterwards with those. They now combine the two procedures. I have the ERCP first. Then they put the scope down to check the esophagus and stomach for formation of new varices, and band these off if need be. Good luck on your next procedure. I'm going in April 15 for my next ERCP/endoscopy. I call it my valium holiday at NEMC Spa (nee Endoscopy unit)...have to have a sense of humor about this stuff. Because I go so frequently, I have asked various friends to take me. We get to visit some on the way down, then while I'm having the procedure done, they can go tour Boston for a couple of hours, come back, and drive me back home. It's worked really well, so far. OneAVIDman@... wrote: > I have had two ERCPs done. The first was when I was dx with PSC back in '95. I > didn't have any problems at all then. I even woke up just before they pulled > the scope out of my mouth. They said the drugs wore off a little too soon. > > I had the second one back in January and it was a lot different. I talked to > the Dr. just before and told him about waking up and he said he would give > just a little more drugs this time. I think that is where my problem was. They > gave me just a little bit too much. When I woke up I was already in recover. I > could hardly stay awake and then I started getting sick. I couldn't keep > anything down at all. I tried drinking just a little water but to no avail. I > had the problem all evening. I finally went to bed after 10pm and only got > sick once. > > I stayed home the next day and started getting liquids back in me. It took me > the full day to finally start feeling better. > > I think the bottom line for me was, TOO MUCH DRUGS!!! During the follow-up > visit he did say that the drugs would have to be adjusted for the next one. Or > he could try a different one altogether. It will probably be different the > next time too. > > Hope this helps. > > Larry > > ------------------------------------------------------------------------ > eGroups Spotlight: > " Kosovo-Reports " - Direct reports from Kosovo/Serbia/Yugoslavia. > http://offers./click/252/0 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 1999 Report Share Posted March 30, 1999 , etc., Tell me more about the banding of varices. What is the procedure? How long does it last, etc. Dan On Tuesday, March 30, 1999 7:50 AM, mltill [sMTP:mlt118@...] wrote: > I haven't had many complications from the ERCP, thank goodness....the bandings of > the esophageal varices are done by endoscopy, and I have more pain afterwards with > those. They now combine the two procedures. I have the ERCP first. Then they > put the scope down to check the esophagus and stomach for formation of new > varices, and band these off if need be. > > Good luck on your next procedure. I'm going in April 15 for my next > ERCP/endoscopy. I call it my valium holiday at NEMC Spa (nee Endoscopy > unit)...have to have a sense of humor about this stuff. Because I go so > frequently, I have asked various friends to take me. We get to visit some on the > way down, then while I'm having the procedure done, they can go tour Boston for a > couple of hours, come back, and drive me back home. It's worked really well, so > far. > > > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 1999 Report Share Posted March 30, 1999 Dan, As my disease progressed, I had formation of esophageal varices, and this led to a nasty internal bleed in May, 1998. These varices are formed by portal hypertension...i.e., the blood flow through the liver slows as the liver deteriorates, and then there is more pressure as the blood flows through the stomach and esophagus. At the time of the bleed, the GI doc performed an emergency banding off of the varices. He put a scope down my esophagus which located the varices. Once he had located one of the varices, he pushed a button, and a band from the scope shot off the scope and closed off the varices and stopped the bleeding. The scope is called a " six shooter " because it has six bands on it. The bleed happened when I was in Keene, NH, and I stayed in the hospital for several days--two in intensive care. I lost 2 liters of blood in a short period of time, and I was given 3 pints shortly after arriving at the ER. I have been anemic ever since the bleed--just can't seem to shake it, but that, too, could be due to the progression of the illness. When I got back to Manchester, Dr. Lee, my doc at New England Medical in Boston, scheduled me in for an endoscopy two weeks after the bleed (June, 1998). Sure enough, I had formed four new varices. After that, she scheduled me in monthly for endoscopy/banding procedures, and I usually had to have new varices banded. The bandings take about 15-20 minutes to perform. Of course, there's always the preparation beforehand (starting IV's, etc.). I usually could be done in 2-3 hours. Approximately 24-48 hours after the bandings, though, I really could feel the pain from the procedure. I got used to eating puddings, Carnation Instant Breakfast, jello, and ginger ale for a few days until the soreness in my esophagus subsided. In October, I had just had a banding when I got an infection from a blockage in my bile duct. They couldn't do an ERCP to alleviate the blockage due to the fact that the bandings were susceptible to being dislodged by the scope they would use for the ERCP. So, they pumped me full of antibiotics, and they sent me home to wait for the ERCP. That's when they came up with the idea of doing the ERCP on a regular basis (instead of waiting for a bout of cholangitis), and doing the banding immediately afterwards. Luckily for me I have not formed new varices that need banding since November. I am on a medication that lowers my blood pressure to hopefully prevent the pressure that causes the varices, but unfortunately, I tend to run a low blood pressure normally, and sometimes I get dizzy from the addition of the medicine. So, I occasionally check my blood pressure to make sure the upper number is at least above 100 before I take the medication. I have, on my own, however, decided that I will not travel over an hour away from a hospital that has a " six-shooter " available. The GI doc in Keene, NH warned me of this...He stated that a woman died from a bleed in a small town in Mass. last year because the hospital could not band off the varices. I also no longer fly, which is a bummer because I'd love to see my kids and grandson in D.C....They now come to see me, though. Better safe than sorry... The bleeding is related to cirhossis, and only comes with end-stage symptoms of liver deterioration. It isn't a problem with only PSC...people with other liver diseases have the same difficulties. Because I had been in touch over E-Mail with Roy and Toutant, I knew about the esophageal bleeding before mine occurred. has had two bleeds. During the scariest moments of the whole event, I just kept reminding myself that I would survive this because I knew of 's experience. That's why groups like this are so helpful. Roy and gave me lots of good information about this whole process before I had to experience it myself. Wow! This is a long answer to your question....I guess I rattle on a lot... Dan Bertles wrote: > , etc., > > Tell me more about the banding of varices. What is the procedure? How long > does it last, etc. > > Dan > > On Tuesday, March 30, 1999 7:50 AM, mltill [sMTP:mlt118@...] wrote: > > I haven't had many complications from the ERCP, thank goodness....the > bandings of > > the esophageal varices are done by endoscopy, and I have more pain > afterwards with > > those. They now combine the two procedures. I have the ERCP first. Then > they > > put the scope down to check the esophagus and stomach for formation of new > > varices, and band these off if need be. > > > > Good luck on your next procedure. I'm going in April 15 for my next > > ERCP/endoscopy. I call it my valium holiday at NEMC Spa (nee Endoscopy > > unit)...have to have a sense of humor about this stuff. Because I go so > > frequently, I have asked various friends to take me. We get to visit some > on the > > way down, then while I'm having the procedure done, they can go tour > Boston for a > > couple of hours, come back, and drive me back home. It's worked really > well, so > > far. > > > > > > > > ------------------------------------------------------------------------ > eGroups Spotlight: > " Kosovo-Reports " - Direct reports from Kosovo/Serbia/Yugoslavia. > http://offers./click/252/0 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 1999 Report Share Posted March 30, 1999 Thanks , One last question. The " banding " is it like a staple or a clamp; plastic, metal? Dan On Tuesday, March 30, 1999 9:05 AM, mltill [sMTP:mlt118@...] wrote: > Dan, > > As my disease progressed, I had formation of esophageal varices, and this led to > a nasty internal bleed in May, 1998. These varices are formed by portal > hypertension...i.e., the blood flow through the liver slows as the liver > deteriorates, and then there is more pressure as the blood flows through the > stomach and esophagus. > > At the time of the bleed, the GI doc performed an emergency banding off of the > varices. He put a scope down my esophagus which located the varices. Once he > had located one of the varices, he pushed a button, and a band from the scope > shot off the scope and closed off the varices and stopped the bleeding. The > scope is called a " six shooter " because it has six bands on it. > The bleed happened when I was in Keene, NH, and I stayed in the hospital for > several days--two in intensive care. I lost 2 liters of blood in a short period > of time, and I was given 3 pints shortly after arriving at the ER. I have been > anemic ever since the bleed--just can't seem to shake it, but that, too, could > be due to the progression of the illness. > > When I got back to Manchester, Dr. Lee, my doc at New England Medical in > Boston, scheduled me in for an endoscopy two weeks after the bleed (June, > 1998). Sure enough, I had formed four new varices. After that, she scheduled > me in monthly for endoscopy/banding procedures, and I usually had to have new > varices banded. The bandings take about 15-20 minutes to perform. Of course, > there's always the preparation beforehand (starting IV's, etc.). I usually > could be done in 2-3 hours. Approximately 24-48 hours after the bandings, > though, I really could feel the pain from the procedure. I got used to eating > puddings, Carnation Instant Breakfast, jello, and ginger ale for a few days > until the soreness in my esophagus subsided. > > In October, I had just had a banding when I got an infection from a blockage in > my bile duct. They couldn't do an ERCP to alleviate the blockage due to the > fact that the bandings were susceptible to being dislodged by the scope they > would use for the ERCP. So, they pumped me full of antibiotics, and they sent > me home to wait for the ERCP. That's when they came up with the idea of doing > the ERCP on a regular basis (instead of waiting for a bout of cholangitis), and > doing the banding immediately afterwards. > > Luckily for me I have not formed new varices that need banding since November. > I am on a medication that lowers my blood pressure to hopefully prevent the > pressure that causes the varices, but unfortunately, I tend to run a low blood > pressure normally, and sometimes I get dizzy from the addition of the medicine. > So, I occasionally check my blood pressure to make sure the upper number is at > least above 100 before I take the medication. > > I have, on my own, however, decided that I will not travel over an hour away > from a hospital that has a " six-shooter " available. The GI doc in Keene, NH > warned me of this...He stated that a woman died from a bleed in a small town in > Mass. last year because the hospital could not band off the varices. I also no > longer fly, which is a bummer because I'd love to see my kids and grandson in > D.C....They now come to see me, though. Better safe than sorry... > > The bleeding is related to cirhossis, and only comes with end-stage symptoms of > liver deterioration. It isn't a problem with only PSC...people with other liver > diseases have the same difficulties. > > Because I had been in touch over E-Mail with Roy and Toutant, I knew about > the esophageal bleeding before mine occurred. has had two bleeds. During > the scariest moments of the whole event, I just kept reminding myself that I > would survive this because I knew of 's experience. That's why groups like > this are so helpful. Roy and gave me lots of good information about this > whole process before I had to experience it myself. > > Wow! This is a long answer to your question....I guess I rattle on a lot... > > > > Dan Bertles wrote: > > > , etc., > > > > Tell me more about the banding of varices. What is the procedure? How long > > does it last, etc. > > > > Dan > > > > On Tuesday, March 30, 1999 7:50 AM, mltill [sMTP:mlt118@...] wrote: > > > I haven't had many complications from the ERCP, thank goodness....the > > bandings of > > > the esophageal varices are done by endoscopy, and I have more pain > > afterwards with > > > those. They now combine the two procedures. I have the ERCP first. Then > > they > > > put the scope down to check the esophagus and stomach for formation of new > > > varices, and band these off if need be. > > > > > > Good luck on your next procedure. I'm going in April 15 for my next > > > ERCP/endoscopy. I call it my valium holiday at NEMC Spa (nee Endoscopy > > > unit)...have to have a sense of humor about this stuff. Because I go so > > > frequently, I have asked various friends to take me. We get to visit some > > on the > > > way down, then while I'm having the procedure done, they can go tour > > Boston for a > > > couple of hours, come back, and drive me back home. It's worked really > > well, so > > > far. > > > > > > > > > > > > > ------------------------------------------------------------------------ > > eGroups Spotlight: > > " Kosovo-Reports " - Direct reports from Kosovo/Serbia/Yugoslavia. > > http://offers./click/252/0 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 , Thanks for the info on the ERCP. I will make sure the next time I am scheduled that I ask him about the drugs. I hope I don't have to go for another 3 years like the last one. Good luck with yours, my prayers are with you. Larry ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 - I'm glad to hear you are so much better. I'm just catching up on a few days' of mail. Had computer problems first and now I'm a bit under the weather--have been in bed for more than 24 hrs and still feel wiped out. This is the first time I've sat up for any length of time. I hope you are continuing to do well. I've heard that once you have a reaction to something--be it medications or bee stings, etc. -- that each successive time is worse. So take care. Thoughts & Prayers are with you. Laurie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Laurie, Thanks for the information. I tried to bring up the reaction to my doc, but she didn't seem to want to tie it immediately to the ERCP and the antibiotics....Now I'm really worried about the ERCP next time (May 28). I don't think I can handle much worse of a reaction! When I talked to her yesterday on the phone, I thought that I'd just see if it happens again, and if it does, then it will prove that it's related to the antibiotics. However, now, I don't know if that's such a good idea. I am supposed to keep a daily journal related to bowel movements (YUK...the things we do because of this disease!). So, if I go for a while without the watery diaherea, then I will let her know before the ERCP about my concerns. I'm so sorry you're having a hard time. That candle I am burning for will just have to do double duty, and send some healing energy your way, also. Take care, and thanks for keeping in touch. Oceandrmer@... wrote: > - > I'm glad to hear you are so much better. I'm just catching up on a few > days' of mail. Had computer problems first and now I'm a bit under the > weather--have been in bed for more than 24 hrs and still feel wiped out. > This is the first time I've sat up for any length of time. > > I hope you are continuing to do well. I've heard that once you have a > reaction to something--be it medications or bee stings, etc. -- that each > successive time is worse. So take care. > > Thoughts & Prayers are with you. > Laurie > > ------------------------------------------------------------------------ > G-SHOCK SPORTS WATCH - Built Tough! Built Cool! G-SHOCK keeps you in > Sync! Shock Resistant and Loaded with Features! Electo-luminescent, > Satisfaction Guaranteed*No-Hassle Returns*Only $69 Free Freight in US > http://clickhere./click/143 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 , What is ERCP? I am assuming it is the balloon therapy. How do they get into the ducts that snake off into all directions? Larry P. glenn+janet wrote: > > , > > My name is Janet and I was DX 6 yrs ago with PSC. I have had only one ERCP > and I am on Actigall, 600 mgs. per day. I seem to be holding my own and > this past March my LFT's were not too bad according to Dr. Lee in Boston. > An ultrasound did not show any further damage to my liver( same as 5 years > ago). > > I'm holding my own for now but PSC is very unpredictable. > > Welcome to the group and I'll be talking to you. > > Janet > > Re: from -Brown > > > > > > -Brown-- > > Welcome to our group, although it's too bad we get to know you in this > way. > > I've had PSC for 12 years (diagnosed in '87), but possibly as long ago as > > 1980 when my liver enzymes > > first became elevated & I had bouts of cholangitis. I have had numerous > > ERCPs and don't know where to start to give you info. So maybe the best > > thing is if you have particular questions, feel free & I (and others who > > have > > experienced this) will be able to answer. > > > > In the meantime, know that we are here for you and each other, whenever > you > > need us. > > > > Take Care. > > > > Laurie > > > > ------------------------------------------------------------------------ > > @Backup - The #1 Online Backup Service > > Automatic, Safe, Reliable Backup and Restores. FREE for > > 30 Days. INSTALL Now and have a chance to win a Palm Pilot V! > > http://clickhere./click/218 > > > > Quote Link to comment Share on other sites More sharing options...
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