Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 This may be a little premature, but I did find out a few weeks ago that I'm pregnant! As some of you may recall, I was diagnosed last May based on my GI doctor's hunch that my Indeterminate IBD (probably Crohn's) looked like patients he has who have PSC, plus having had dysplasia after only 8 years of IBD also suggested PSC. So I did an ERCP and here I am, though symptom-free and apparently my PSC is extra-hepatic (which I understand from recent posts is good news). My initial reaction to the diagnosis was: should I have more children like I was planning to? Many of you weighed in on the issue and some shared similar dilemmas. Well I've gotten used to the PSC idea and I no longer think I'll be dead in 10-12 years, like I thought when I initially was diagnosed. So feeling optimistic, my husband and I got sloppy about protection, and now, a pleasant surprise! The only catch is that my Crohn's has been flaring up pretty badly in my rectum (all that's left of my colon, which was removed December 2007). When I was at Mayo a few weeks ago, my GI doctor wanted me to get back on Remicade, which I had been on in the past (for two years) and which didn't help me at the time. He says now it may be different. But being pregnant, I really don't feel like starting a new drug that is not generally recommended for pregnancy (though he says he has lots of patients who have been pregnant on Remicade and everything was fine) as well as Azathioprine, which is also not recommended for pregnancy (though he says the same thing about it). Especially since the Remicade didn't help! So I'm due back at Mayo Rochester March 6 for another scope and a joint meeting with their high-risk OB folks to see what's riskier - Remicade or something else. ly I don't see why he doesn't just put me on Prednisone for the duration of the pregnancy, it's very effective for the Crohn's and perfectly safe for the baby. For now I'm doing these Cortisone enemas, which is no fun, but I think it's helping a bit. So there's been some drama with my doctor, but otherwise I'm very very happy to be blessed with this child. It'll be my third. I guess this has been more of an IBD post than a PSC post, but I'd love any of your insights on the pregnancy and drugs issue. Like I said, it's early (I think I'm about 8 weeks). I have my first ultrasound next week, but I'm already experiencing nausea and fatigue, so I'm hoping the pregnancy will go well. Oh - those of you who are my friends on Facebook, please don't mention it in any Facebook posts - most people don't know yet and there are a few work people in my network who I don't want to know until I talk to my boss about it, which won't be for a while. Thanks. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Ruth- Make sure that your Hep refers you to an OB doc. And make sure you are seen right away, as OB docs don't even see moms now untill week 10 or 12. My Hep sent me to a specialist, after seeing a regular OB doc. My LFTs stayed great the whole time. I had alot of other problems, but that was due to my age and other issues. But just know that pre eclampsia can last up to 6 weeks after delivery. (I was never told that til I was in the Hosp. 2 weeks after Henry was born due to High Blood Pressure) We got our little miracle early, but he was so worth it. Blessings to you and good luck!!! Annie This may be a little premature, but I did find out a few weeks ago that I'm pregnant! As some of you may recall, I was diagnosed last May based on my GI doctor's hunch that my Indeterminate IBD (probably Crohn's) looked like patients he has who have PSC, plus having had dysplasia after only 8 years of IBD also suggested PSC. So I did an ERCP and here I am, though symptom-free and apparently my PSC is extra-hepatic (which I understand from recent posts is good news). My initial reaction to the diagnosis was: should I have more children like I was planning to? Many of you weighed in on the issue and some shared similar dilemmas. Well I've gotten used to the PSC idea and I no longer think I'll be dead in 10-12 years, like I thought when I initially was diagnosed. So feeling optimistic, my husband and I got sloppy about protection, and now, a pleasant surprise!The only catch is that my Crohn's has been flaring up pretty badly in my rectum (all that's left of my colon, which was removed December 2007). When I was at Mayo a few weeks ago, my GI doctor wanted me to get back on Remicade, which I had been on in the past (for two years) and which didn't help me at the time. He says now it may be different. But being pregnant, I really don't feel like starting a new drug that is not generally recommended for pregnancy (though he says he has lots of patients who have been pregnant on Remicade and everything was fine) as well as Azathioprine, which is also not recommended for pregnancy (though he says the same thing about it). Especially since the Remicade didn't help! So I'm due back at Mayo Rochester March 6 for another scope and a joint meeting with their high-risk OB folks to see what's riskier - Remicade or something else. ly I don't see why he doesn't just put me on Prednisone for the duration of the pregnancy, it's very effective for the Crohn's and perfectly safe for the baby. For now I'm doing these Cortisone enemas, which is no fun, but I think it's helping a bit. So there's been some drama with my doctor, but otherwise I'm very very happy to be blessed with this child. It'll be my third.I guess this has been more of an IBD post than a PSC post, but I'd love any of your insights on the pregnancy and drugs issue. Like I said, it's early (I think I'm about 8 weeks). I have my first ultrasound next week, but I'm already experiencing nausea and fatigue, so I'm hoping the pregnancy will go well.Oh - those of you who are my friends on Facebook, please don't mention it in any Facebook posts - most people don't know yet and there are a few work people in my network who I don't want to know until I talk to my boss about it, which won't be for a while. Thanks.Ruth -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Ruth- Make sure that your Hep refers you to an OB doc. And make sure you are seen right away, as OB docs don't even see moms now untill week 10 or 12. My Hep sent me to a specialist, after seeing a regular OB doc. My LFTs stayed great the whole time. I had alot of other problems, but that was due to my age and other issues. But just know that pre eclampsia can last up to 6 weeks after delivery. (I was never told that til I was in the Hosp. 2 weeks after Henry was born due to High Blood Pressure) We got our little miracle early, but he was so worth it. Blessings to you and good luck!!! Annie This may be a little premature, but I did find out a few weeks ago that I'm pregnant! As some of you may recall, I was diagnosed last May based on my GI doctor's hunch that my Indeterminate IBD (probably Crohn's) looked like patients he has who have PSC, plus having had dysplasia after only 8 years of IBD also suggested PSC. So I did an ERCP and here I am, though symptom-free and apparently my PSC is extra-hepatic (which I understand from recent posts is good news). My initial reaction to the diagnosis was: should I have more children like I was planning to? Many of you weighed in on the issue and some shared similar dilemmas. Well I've gotten used to the PSC idea and I no longer think I'll be dead in 10-12 years, like I thought when I initially was diagnosed. So feeling optimistic, my husband and I got sloppy about protection, and now, a pleasant surprise!The only catch is that my Crohn's has been flaring up pretty badly in my rectum (all that's left of my colon, which was removed December 2007). When I was at Mayo a few weeks ago, my GI doctor wanted me to get back on Remicade, which I had been on in the past (for two years) and which didn't help me at the time. He says now it may be different. But being pregnant, I really don't feel like starting a new drug that is not generally recommended for pregnancy (though he says he has lots of patients who have been pregnant on Remicade and everything was fine) as well as Azathioprine, which is also not recommended for pregnancy (though he says the same thing about it). Especially since the Remicade didn't help! So I'm due back at Mayo Rochester March 6 for another scope and a joint meeting with their high-risk OB folks to see what's riskier - Remicade or something else. ly I don't see why he doesn't just put me on Prednisone for the duration of the pregnancy, it's very effective for the Crohn's and perfectly safe for the baby. For now I'm doing these Cortisone enemas, which is no fun, but I think it's helping a bit. So there's been some drama with my doctor, but otherwise I'm very very happy to be blessed with this child. It'll be my third.I guess this has been more of an IBD post than a PSC post, but I'd love any of your insights on the pregnancy and drugs issue. Like I said, it's early (I think I'm about 8 weeks). I have my first ultrasound next week, but I'm already experiencing nausea and fatigue, so I'm hoping the pregnancy will go well.Oh - those of you who are my friends on Facebook, please don't mention it in any Facebook posts - most people don't know yet and there are a few work people in my network who I don't want to know until I talk to my boss about it, which won't be for a while. Thanks.Ruth -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Congratulations! We're expecting too although I'm not the one with PSC-my husband is. We're due July 24. At this point we're PRAYING that his transplant will happen BEFORE the baby comes. He should be listed, hopefully, by mid March. Our transplant center has a relatively short waiting list so it IS possible. We're just keeping our fingers crossed. Good luck with your pregnancy! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Ruth, Hi! Congratulations! I'm so happy for you. I'll keep all my fingers and toes crossed that this pregnancy goes exactly the way you want it and that none of those silly doctors try to get in your way! You said that you'll be in Rochester on the 6th. I'll be there then, too. My first appointment is on the 2nd. Want to arrange to bump into each other? Where are you all staying? Congratulations again on the pregnancy and the beautiful baby to be! Sand in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Ruth, Hi! Congratulations! I'm so happy for you. I'll keep all my fingers and toes crossed that this pregnancy goes exactly the way you want it and that none of those silly doctors try to get in your way! You said that you'll be in Rochester on the 6th. I'll be there then, too. My first appointment is on the 2nd. Want to arrange to bump into each other? Where are you all staying? Congratulations again on the pregnancy and the beautiful baby to be! Sand in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Ruth- FWIW, I continued my Remicade infusions with my last pregnancy. I know you said Remi is not terribly effective for you, but I just thought I would share. There is not a lot of literature about Remi in pregnancy, at least there wasn't 5 years ago, but both my OB and my GI did some digging and found information that made them both comfortable. As far as the azathioprine (Imuran), I was told by my OB that women who have Lupus take loads more than I was taking for CD, and their pregnancies go very well. As you have probably heard, there is a general 1/3 rule with pregnancy and CD, 1/3 get better, 1/3 stay the same and 1/3 get worse. I will pray that you are in either of the two former groups! Congrats on the pregnancy! And thanks for the heads up about FB, I outed another friend recently by posting on her wall! ee > > This may be a little premature, but I did find out a few weeks ago > that I'm pregnant! As some of you may recall, I was diagnosed last >han a PSC post, but I'd > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Ruth- FWIW, I continued my Remicade infusions with my last pregnancy. I know you said Remi is not terribly effective for you, but I just thought I would share. There is not a lot of literature about Remi in pregnancy, at least there wasn't 5 years ago, but both my OB and my GI did some digging and found information that made them both comfortable. As far as the azathioprine (Imuran), I was told by my OB that women who have Lupus take loads more than I was taking for CD, and their pregnancies go very well. As you have probably heard, there is a general 1/3 rule with pregnancy and CD, 1/3 get better, 1/3 stay the same and 1/3 get worse. I will pray that you are in either of the two former groups! Congrats on the pregnancy! And thanks for the heads up about FB, I outed another friend recently by posting on her wall! ee > > This may be a little premature, but I did find out a few weeks ago > that I'm pregnant! As some of you may recall, I was diagnosed last >han a PSC post, but I'd > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Ruth- FWIW, I continued my Remicade infusions with my last pregnancy. I know you said Remi is not terribly effective for you, but I just thought I would share. There is not a lot of literature about Remi in pregnancy, at least there wasn't 5 years ago, but both my OB and my GI did some digging and found information that made them both comfortable. As far as the azathioprine (Imuran), I was told by my OB that women who have Lupus take loads more than I was taking for CD, and their pregnancies go very well. As you have probably heard, there is a general 1/3 rule with pregnancy and CD, 1/3 get better, 1/3 stay the same and 1/3 get worse. I will pray that you are in either of the two former groups! Congrats on the pregnancy! And thanks for the heads up about FB, I outed another friend recently by posting on her wall! ee > > This may be a little premature, but I did find out a few weeks ago > that I'm pregnant! As some of you may recall, I was diagnosed last >han a PSC post, but I'd > Quote Link to comment Share on other sites More sharing options...
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