Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 Evening to all! In my previous e-mail I said I would try and keep everyone up to date about the goings on with doctor. Today I went to see him. He said that he would like to do another ERCP to replace the stent that is currently in there. He said the stents, typically, are only good for about 3-6 months because they can fill up with bacteria and/or sludge and that is it necessary to replace them. Then they said that about every three months for the next year (possibly two years) that he would like to do an ERCP and replace stents (he said he is putting in two, possibly three stents to stretch open the ducts). Of course you can imagine my obvious distaste for such a thought. ERCP every three months? For a moment I felt like crying, to be honest. But he said that he doesn't seem this as a long-term procedure and that, if all goes well after a few times they might be able to stretch out it to every six months or so until he feels that the duct is able to stay open on its own for a length of time and then, unless problems arise, that I would go in for the ERCP once a year. I only have one stricture, he said, and so far am not an agressive case. He is not putting me on any medication (aside from the 9 pills of Asacol for the UC everyday.) He told me that the Actigall (sp?) would probably be what I would go on but that people usually only get it if they get more frequent cases of jaundice/itching, etc and that the stents, if all goes well, should do their job and the Actigall wouldn't be necessary as of yet. Does anyone know if this sounds right? I'm sort of new to all of this flood of information that everyone has been giving out and I'm not trying to say like I don't believe him, but it just sounds weird. Maybe it's only me. Maybe he doesn't want to overload me with medication unless he feels it's absolutely necessary? He did say that vitamin supplements would not be a bad idea and he wants to do another colonoscopy sometime this year while I'm still in remission to do some biopsies. And, of course, the only thing I envision with all of this is just a flood of dollar signs as the bills roll in. Thank god for insurance. Actually, I do have a question for anyone who might know anything about insurance: I am covered now, but when my fiance and I get married, would it even be possible to be put on his insurance with this pre-existing condition? I know that I may have to wait a bit longer, a year perhaps, because it is pre-existing but I didn't know if they would refuse to cover this PSC. Someone told me that as long as there isn't a break in coverage for at least 60 days with my CURRENT insurance, that it shouldn't be a problem. I don't know. If anyone out there has any information it would be greatly appreciated. Whew! Sorry for this long-winded message. Got a lot going on upstairs in there and just had to spew it out. Hope everyone is doing well and look forward to hearing from you! Sincerely, Shanna UC-'04 PSC-'06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 > > Evening to all! > He said that he would like to do another ERCP to replace the stent that is currently in there. He said the stents, typically, are only good for about 3-6 months because they can fill up with bacteria and/or sludge and that is it necessary to replace them. Then they said that about every three months for the next year (possibly two years) that he would like to do an ERCP and replace stents (he said he is putting in two, possibly three stents to stretch open the ducts). > What the doctor told you is not unusual. I followed a similar course shortly after diagnosis with repeat ERCP's every few months with stent placement and after a year or so things settled down and now I have one every couple of years. Blockage of the stent can be a problem and which is why frequent replacement is necessary. > He told me that the Actigall (sp?) would probably be what I would go on but that people usually only get it if they get more frequent cases of jaundice/itching, etc and that the stents, if all goes well, should do their job and the Actigall wouldn't be necessary as of yet. > I totally agree with Mizkit, and strongly disagree with the Doctor's stance on this issue. There is no reason you should not be on Urso or at least try it. For most it has little or no side effects and not only has potential benefits for bile flow but in for the prevention of colon cancer as well. I would press him on this issue. > He did say that vitamin supplements would not be a bad idea and he wants to do another colonoscopy sometime this year while I'm still in remission to do some biopsies. Many PSC patients have vitamin deficiencies particular with Vit. A, D, and K. Not a bad idea to have your blood tested for these vitamins. I take a vitamin called ADEKS which basically supplements all the fat soluble vitamins PSC patients can be lacking. When first diagnosed I was severely lacking in Vitamin D and moderately in Vitamin K. > > Actually, I do have a question for anyone who might know anything about insurance: I am covered now, but when my fiance and I get married, would it even be possible to be put on his insurance with this pre-existing condition? I know that I may have to wait a bit longer, a year perhaps, because it is pre-existing but I didn't know if they would refuse to cover this PSC. Someone told me that as long as there isn't a break in coverage for at least 60 days with my CURRENT insurance, that it shouldn't be a problem. I don't know. If anyone out there has any information it would be greatly appreciated. > When you get married this would be considered what is called a qualifying event and you should be able to join his insurance with no waiting period and not be subject to pre-existing conditions as long as you had other insurance leading up to that point. Some insurance might have special pre-existing criteria for things like transplant but for normal stuff pre-existing conditions will not apply. in Seattle UC 1991, PSC 2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 > > Evening to all! > He said that he would like to do another ERCP to replace the stent that is currently in there. He said the stents, typically, are only good for about 3-6 months because they can fill up with bacteria and/or sludge and that is it necessary to replace them. Then they said that about every three months for the next year (possibly two years) that he would like to do an ERCP and replace stents (he said he is putting in two, possibly three stents to stretch open the ducts). > What the doctor told you is not unusual. I followed a similar course shortly after diagnosis with repeat ERCP's every few months with stent placement and after a year or so things settled down and now I have one every couple of years. Blockage of the stent can be a problem and which is why frequent replacement is necessary. > He told me that the Actigall (sp?) would probably be what I would go on but that people usually only get it if they get more frequent cases of jaundice/itching, etc and that the stents, if all goes well, should do their job and the Actigall wouldn't be necessary as of yet. > I totally agree with Mizkit, and strongly disagree with the Doctor's stance on this issue. There is no reason you should not be on Urso or at least try it. For most it has little or no side effects and not only has potential benefits for bile flow but in for the prevention of colon cancer as well. I would press him on this issue. > He did say that vitamin supplements would not be a bad idea and he wants to do another colonoscopy sometime this year while I'm still in remission to do some biopsies. Many PSC patients have vitamin deficiencies particular with Vit. A, D, and K. Not a bad idea to have your blood tested for these vitamins. I take a vitamin called ADEKS which basically supplements all the fat soluble vitamins PSC patients can be lacking. When first diagnosed I was severely lacking in Vitamin D and moderately in Vitamin K. > > Actually, I do have a question for anyone who might know anything about insurance: I am covered now, but when my fiance and I get married, would it even be possible to be put on his insurance with this pre-existing condition? I know that I may have to wait a bit longer, a year perhaps, because it is pre-existing but I didn't know if they would refuse to cover this PSC. Someone told me that as long as there isn't a break in coverage for at least 60 days with my CURRENT insurance, that it shouldn't be a problem. I don't know. If anyone out there has any information it would be greatly appreciated. > When you get married this would be considered what is called a qualifying event and you should be able to join his insurance with no waiting period and not be subject to pre-existing conditions as long as you had other insurance leading up to that point. Some insurance might have special pre-existing criteria for things like transplant but for normal stuff pre-existing conditions will not apply. in Seattle UC 1991, PSC 2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 > > Evening to all! > He said that he would like to do another ERCP to replace the stent that is currently in there. He said the stents, typically, are only good for about 3-6 months because they can fill up with bacteria and/or sludge and that is it necessary to replace them. Then they said that about every three months for the next year (possibly two years) that he would like to do an ERCP and replace stents (he said he is putting in two, possibly three stents to stretch open the ducts). > What the doctor told you is not unusual. I followed a similar course shortly after diagnosis with repeat ERCP's every few months with stent placement and after a year or so things settled down and now I have one every couple of years. Blockage of the stent can be a problem and which is why frequent replacement is necessary. > He told me that the Actigall (sp?) would probably be what I would go on but that people usually only get it if they get more frequent cases of jaundice/itching, etc and that the stents, if all goes well, should do their job and the Actigall wouldn't be necessary as of yet. > I totally agree with Mizkit, and strongly disagree with the Doctor's stance on this issue. There is no reason you should not be on Urso or at least try it. For most it has little or no side effects and not only has potential benefits for bile flow but in for the prevention of colon cancer as well. I would press him on this issue. > He did say that vitamin supplements would not be a bad idea and he wants to do another colonoscopy sometime this year while I'm still in remission to do some biopsies. Many PSC patients have vitamin deficiencies particular with Vit. A, D, and K. Not a bad idea to have your blood tested for these vitamins. I take a vitamin called ADEKS which basically supplements all the fat soluble vitamins PSC patients can be lacking. When first diagnosed I was severely lacking in Vitamin D and moderately in Vitamin K. > > Actually, I do have a question for anyone who might know anything about insurance: I am covered now, but when my fiance and I get married, would it even be possible to be put on his insurance with this pre-existing condition? I know that I may have to wait a bit longer, a year perhaps, because it is pre-existing but I didn't know if they would refuse to cover this PSC. Someone told me that as long as there isn't a break in coverage for at least 60 days with my CURRENT insurance, that it shouldn't be a problem. I don't know. If anyone out there has any information it would be greatly appreciated. > When you get married this would be considered what is called a qualifying event and you should be able to join his insurance with no waiting period and not be subject to pre-existing conditions as long as you had other insurance leading up to that point. Some insurance might have special pre-existing criteria for things like transplant but for normal stuff pre-existing conditions will not apply. in Seattle UC 1991, PSC 2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Shanna, I agree with MizKit and !! Certainly, you need to be on Actigall (Urso) now!!! When it comes to insurance...the laws changed about the time I went on disability, for the better. Now, a company cannot claim pre-existing illness AS LONG AS you've had continual health coverage. I had this explained to me VERY thoroughly when I left my last employer, by head of human resources (in 1999). She even printed out "proof" of coverage letter, to give to any future insurance company. If you have not had any lapse in insurance it will go smoothly. If it doesn't fight with all your might! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Shanna, I agree with MizKit and !! Certainly, you need to be on Actigall (Urso) now!!! When it comes to insurance...the laws changed about the time I went on disability, for the better. Now, a company cannot claim pre-existing illness AS LONG AS you've had continual health coverage. I had this explained to me VERY thoroughly when I left my last employer, by head of human resources (in 1999). She even printed out "proof" of coverage letter, to give to any future insurance company. If you have not had any lapse in insurance it will go smoothly. If it doesn't fight with all your might! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Shanna, I agree with MizKit and !! Certainly, you need to be on Actigall (Urso) now!!! When it comes to insurance...the laws changed about the time I went on disability, for the better. Now, a company cannot claim pre-existing illness AS LONG AS you've had continual health coverage. I had this explained to me VERY thoroughly when I left my last employer, by head of human resources (in 1999). She even printed out "proof" of coverage letter, to give to any future insurance company. If you have not had any lapse in insurance it will go smoothly. If it doesn't fight with all your might! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 > > He told me that the Actigall (sp?) would probably be what I would go > on but that people usually only get it if they get more frequent > cases of jaundice/itching, etc and that the stents, if all goes well, > should do their job and the Actigall wouldn't be necessary as of yet. The time to start Ursodiol is NOW, not after extensive damage has been done. Increasing the fluidity of the bile may help prevent the stents clogging. If you have trouble convincing him to start you on Actigall, download the three papers on the yahoo site's " Files " section, from the folder " high-dose Urso " . One of the papers suggests that the tablet formulation called URSO in 250 mg tablets (Axcan) has higher bioavailability than the Actigall powder-in-capsule formulation. The target dose should be 30 mg/kg/day. Ursodiol, the drug in all these formulations, is very benign, though expensive. Several of us have used it throughout pregnancy (I took 15 mg/kg/day at the time) and had healthy children. Actigall gave me occasional nasty burps (quickly over, though), but URSO doesn't cause this problem. You should be getting 1 mg/day of folic acid, higher than the dose suggested for women of childbearing age. You will need a prescription for this dose; the over-the-counter version is 400 mcg (0.4 mg), unless you want to cut pills in half. Folate is an essential nutrient, and if there is a chance of you having children, you should be taking it to prevent neural tube defects like spina bifida. UC can interfere with folate uptake. Folate also may protect against some cancers. has advocated fish oils, and there is an ongoing study on one of the omega-3 fatty acids, DHA, in treating PSC. It's been very effective in mice with induced PSC. I take 3 capsules a day of Cod liver Oil containing 240 mg DHA and 150 mg EPA. Other people take other supplements that are thought to be good for the liver, like Milk Thistle. You should be having regular views of your bile ducts, either through ERCP, or when you have stabilized, MRCP. This is important for cancer surveillance too. PSC raises the risks of colon and bile duct cancers. Do have a look at the current and past PSC newsletter. has put a LOT of information in these for us! Martha (MA) 43, UC 1979, PSC 1992 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 > > He told me that the Actigall (sp?) would probably be what I would go > on but that people usually only get it if they get more frequent > cases of jaundice/itching, etc and that the stents, if all goes well, > should do their job and the Actigall wouldn't be necessary as of yet. The time to start Ursodiol is NOW, not after extensive damage has been done. Increasing the fluidity of the bile may help prevent the stents clogging. If you have trouble convincing him to start you on Actigall, download the three papers on the yahoo site's " Files " section, from the folder " high-dose Urso " . One of the papers suggests that the tablet formulation called URSO in 250 mg tablets (Axcan) has higher bioavailability than the Actigall powder-in-capsule formulation. The target dose should be 30 mg/kg/day. Ursodiol, the drug in all these formulations, is very benign, though expensive. Several of us have used it throughout pregnancy (I took 15 mg/kg/day at the time) and had healthy children. Actigall gave me occasional nasty burps (quickly over, though), but URSO doesn't cause this problem. You should be getting 1 mg/day of folic acid, higher than the dose suggested for women of childbearing age. You will need a prescription for this dose; the over-the-counter version is 400 mcg (0.4 mg), unless you want to cut pills in half. Folate is an essential nutrient, and if there is a chance of you having children, you should be taking it to prevent neural tube defects like spina bifida. UC can interfere with folate uptake. Folate also may protect against some cancers. has advocated fish oils, and there is an ongoing study on one of the omega-3 fatty acids, DHA, in treating PSC. It's been very effective in mice with induced PSC. I take 3 capsules a day of Cod liver Oil containing 240 mg DHA and 150 mg EPA. Other people take other supplements that are thought to be good for the liver, like Milk Thistle. You should be having regular views of your bile ducts, either through ERCP, or when you have stabilized, MRCP. This is important for cancer surveillance too. PSC raises the risks of colon and bile duct cancers. Do have a look at the current and past PSC newsletter. has put a LOT of information in these for us! Martha (MA) 43, UC 1979, PSC 1992 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 > > He told me that the Actigall (sp?) would probably be what I would go > on but that people usually only get it if they get more frequent > cases of jaundice/itching, etc and that the stents, if all goes well, > should do their job and the Actigall wouldn't be necessary as of yet. The time to start Ursodiol is NOW, not after extensive damage has been done. Increasing the fluidity of the bile may help prevent the stents clogging. If you have trouble convincing him to start you on Actigall, download the three papers on the yahoo site's " Files " section, from the folder " high-dose Urso " . One of the papers suggests that the tablet formulation called URSO in 250 mg tablets (Axcan) has higher bioavailability than the Actigall powder-in-capsule formulation. The target dose should be 30 mg/kg/day. Ursodiol, the drug in all these formulations, is very benign, though expensive. Several of us have used it throughout pregnancy (I took 15 mg/kg/day at the time) and had healthy children. Actigall gave me occasional nasty burps (quickly over, though), but URSO doesn't cause this problem. You should be getting 1 mg/day of folic acid, higher than the dose suggested for women of childbearing age. You will need a prescription for this dose; the over-the-counter version is 400 mcg (0.4 mg), unless you want to cut pills in half. Folate is an essential nutrient, and if there is a chance of you having children, you should be taking it to prevent neural tube defects like spina bifida. UC can interfere with folate uptake. Folate also may protect against some cancers. has advocated fish oils, and there is an ongoing study on one of the omega-3 fatty acids, DHA, in treating PSC. It's been very effective in mice with induced PSC. I take 3 capsules a day of Cod liver Oil containing 240 mg DHA and 150 mg EPA. Other people take other supplements that are thought to be good for the liver, like Milk Thistle. You should be having regular views of your bile ducts, either through ERCP, or when you have stabilized, MRCP. This is important for cancer surveillance too. PSC raises the risks of colon and bile duct cancers. Do have a look at the current and past PSC newsletter. has put a LOT of information in these for us! Martha (MA) 43, UC 1979, PSC 1992 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.