Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 Hi everyone, My name is Colleen and I used to post regularly here back in 2000-2002 or so, not too long after I was Dxed with PSC in 2000. I see some familiar names, but there are too many new names for me to even begin to believe. Anyway, I kinda fell off posting for a couple reasons -- out of sight, out of mind -- I found I felt better if I didn't dwell on my PSC. Add to that two small children and trying to run a small business out of my home, and the time slips by each day. So, here I am. For the " oldtimers " who might remember me, Jens and I are living in Massachusetts again. Our daughter, Anneke, is now 4 1/2 and our son Fritz (Friedrich Henry -- born 9/25/06) is truly the apple of his mother's eye! I started knitting a couple years ago, then got a spinning wheel, then started dyeing yarn and spinning fiber and selling it online. I've basically gone without medication since January 2003, when I got pregnant with Anneke, and just wrapped up nursing Fritz -- because I need to get my own health back in line. I'm coming off one of the worst winters of my life. My UC and PSC were in full-blown flare and I spent from November to March dragging myself around -- the itching, the fatigue, the racing to the bathroom, the nausea. There were plenty of days that I wished I could have just died, rather than suffer another minute of PSC/UC. I had my colonoscopy on 2/1 and got a Dutch uncle lecture from my GI.I think he is not a big fan of Marshall Kaplan, as he asked me to go see a new guy. And as much as I love Dr. Kaplan, I have wondered for a while what will eventually happen when he either retires or passes away. So I met with the new guy -- Dan Pratt at Mass General -- very nice man, awesome office staff. He listened to me for an hour, which impressed me. Because my PSC is immuno- responsive (I went into remission during both pregnancies) he wants to get me on 6-MP (hence why I weaned Fritz) after getting new baselines with an MRCP and liver biopsy. Phew! So there is soup-to-nuts what has been going on with me! I hope to be around a little more, as I need to keep myself healthy so I am around to be a mom to my kids! I have a long road ahead of me yet, and I can't afford to just give up. Oh -- here are my latest liver panels -- I never know what to make of these -- if anyone has any insight, I'd love to hear it: AST -- 407 ALK -- 1306 ALT -- 412 Total Bili -- 1.9 Direct Bili -- 1.1 Those are all elevated -- and the test methodology was ADVIA Centaur. Anyway, we skipped baths last night, so I need to toss two kids in the tub and do a little scrubbing! Oh -- one other biggie -- I turned 40 in March. Whoa, that was a nonevent! Have a great Saturday all! Colleen UC dx 8/1984 PSC dx 8/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 Colleen, welcome back! I remember you. My itching was sporatic in the beginning and got relentless 4 years ago. I've everything short of a narcotic patch (which the doctor says he will try when I am ready to give up working and driving...so basically when hell freezes over..) I was listed 2 years ago at a MELD of 11 and now it is 9. Just had an appt with my doc yesterday, says I look great...wishes all his liver patients looked like me (I think I look like crap....I see yellow and I don't feel that well, but apparently I am able to conceal it....even to the doctor) Cindy Baudoux-Northrup __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 Colleen, welcome back! I remember you. My itching was sporatic in the beginning and got relentless 4 years ago. I've everything short of a narcotic patch (which the doctor says he will try when I am ready to give up working and driving...so basically when hell freezes over..) I was listed 2 years ago at a MELD of 11 and now it is 9. Just had an appt with my doc yesterday, says I look great...wishes all his liver patients looked like me (I think I look like crap....I see yellow and I don't feel that well, but apparently I am able to conceal it....even to the doctor) Cindy Baudoux-Northrup __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 Colleen, welcome back! I remember you. My itching was sporatic in the beginning and got relentless 4 years ago. I've everything short of a narcotic patch (which the doctor says he will try when I am ready to give up working and driving...so basically when hell freezes over..) I was listed 2 years ago at a MELD of 11 and now it is 9. Just had an appt with my doc yesterday, says I look great...wishes all his liver patients looked like me (I think I look like crap....I see yellow and I don't feel that well, but apparently I am able to conceal it....even to the doctor) Cindy Baudoux-Northrup __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Imuran is probably the trade name you're thinking about (Remicade is a biological drug also used to treat IBD, but it's a completely different beast--not an immunosuppressant). Imuran is metabolized into 6-mp in the body; they are basically the same thing, only the 6- mp is one step closer to already being broken down so your body can use it. Genevieve UC 1983, J-Pouch 1999, PSC 12/07 > Anyway, I also have ulcerative colitis and my original GI put me on 6-MP years ago, which > is a short name for mercaptopurine. I believe there is another name for it -- is it > remicade? I can't recall, because I was on it for years and my brain can no longer dredge > up that kind of detail! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Imuran is probably the trade name you're thinking about (Remicade is a biological drug also used to treat IBD, but it's a completely different beast--not an immunosuppressant). Imuran is metabolized into 6-mp in the body; they are basically the same thing, only the 6- mp is one step closer to already being broken down so your body can use it. Genevieve UC 1983, J-Pouch 1999, PSC 12/07 > Anyway, I also have ulcerative colitis and my original GI put me on 6-MP years ago, which > is a short name for mercaptopurine. I believe there is another name for it -- is it > remicade? I can't recall, because I was on it for years and my brain can no longer dredge > up that kind of detail! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Imuran is probably the trade name you're thinking about (Remicade is a biological drug also used to treat IBD, but it's a completely different beast--not an immunosuppressant). Imuran is metabolized into 6-mp in the body; they are basically the same thing, only the 6- mp is one step closer to already being broken down so your body can use it. Genevieve UC 1983, J-Pouch 1999, PSC 12/07 > Anyway, I also have ulcerative colitis and my original GI put me on 6-MP years ago, which > is a short name for mercaptopurine. I believe there is another name for it -- is it > remicade? I can't recall, because I was on it for years and my brain can no longer dredge > up that kind of detail! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Yep! That is it! Thanks Genevieve! Colleen > > > Anyway, I also have ulcerative colitis and my original GI put me on > 6-MP years ago, which > > is a short name for mercaptopurine. I believe there is another name > for it -- is it > > remicade? I can't recall, because I was on it for years and my > brain can no longer dredge > > up that kind of detail! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Yep! That is it! Thanks Genevieve! Colleen > > > Anyway, I also have ulcerative colitis and my original GI put me on > 6-MP years ago, which > > is a short name for mercaptopurine. I believe there is another name > for it -- is it > > remicade? I can't recall, because I was on it for years and my > brain can no longer dredge > > up that kind of detail! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Yep! That is it! Thanks Genevieve! Colleen > > > Anyway, I also have ulcerative colitis and my original GI put me on > 6-MP years ago, which > > is a short name for mercaptopurine. I believe there is another name > for it -- is it > > remicade? I can't recall, because I was on it for years and my > brain can no longer dredge > > up that kind of detail! > > > Quote Link to comment Share on other sites More sharing options...
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