Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 I don't want to scare you but your infections sound very serious. My husband Phil had a series of infections when he was first diagnosed and then went a year before he had another and has gone 6 months since that one. For him the Cipro IV has taken care of it and he has not had to stay on it. The last time they used Cipro-Floxin. Several people in the group have to stay on antibiotics all the time. One of the things that I think has really helped Phil is that he takes higher doses of Actigall, he is now up to 1800 (he weighs 160) and could by the formula that has been mentioned in the group could be taking as high as 2100. I can't believe that they haven't come up with a definitive diagnosis after all those ERCPs. That is the best way of diagnosing PSC. Yes you should ask for a definitive diagnosis and if they can't give you one have them send you to someone that can. Although they seem to be treating you in the way PSC should be treated. Tell them of your situation with your husband and how necessary it is to have something definitive. As far as your foot pain. I don't have PSC but get up in the morning with terrible foot pain. Here is what the doctor suggested for me. She said that when you sleep you sleep with your foot stretched out and the muscle contracts so that when you bend your foot it hurts. Do rotations with your foot before getting out of bed, then slid into a pair of slippers with a firm sole. That type of slipper is very popular right now. See if that helps. As far as your new marriage, Phil and I were married for less than 2 years when he was diagnosed. But we have a really good relationship that is withstanding the stress, I have a number of health problems (not anywhere as serious as PSC)so it isn't too much of a problem with us. I seriously think you two should get into some counseling to be able to deal with this in a new marital relationship. Where do you live? Welcome to the group and I hope we can be of some help to you and give you the support you need. We'll be praying and burning candles for you. Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 I don't want to scare you but your infections sound very serious. My husband Phil had a series of infections when he was first diagnosed and then went a year before he had another and has gone 6 months since that one. For him the Cipro IV has taken care of it and he has not had to stay on it. The last time they used Cipro-Floxin. Several people in the group have to stay on antibiotics all the time. One of the things that I think has really helped Phil is that he takes higher doses of Actigall, he is now up to 1800 (he weighs 160) and could by the formula that has been mentioned in the group could be taking as high as 2100. I can't believe that they haven't come up with a definitive diagnosis after all those ERCPs. That is the best way of diagnosing PSC. Yes you should ask for a definitive diagnosis and if they can't give you one have them send you to someone that can. Although they seem to be treating you in the way PSC should be treated. Tell them of your situation with your husband and how necessary it is to have something definitive. As far as your foot pain. I don't have PSC but get up in the morning with terrible foot pain. Here is what the doctor suggested for me. She said that when you sleep you sleep with your foot stretched out and the muscle contracts so that when you bend your foot it hurts. Do rotations with your foot before getting out of bed, then slid into a pair of slippers with a firm sole. That type of slipper is very popular right now. See if that helps. As far as your new marriage, Phil and I were married for less than 2 years when he was diagnosed. But we have a really good relationship that is withstanding the stress, I have a number of health problems (not anywhere as serious as PSC)so it isn't too much of a problem with us. I seriously think you two should get into some counseling to be able to deal with this in a new marital relationship. Where do you live? Welcome to the group and I hope we can be of some help to you and give you the support you need. We'll be praying and burning candles for you. Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Hi ine, Welcome to our group. Welcome home, in fact. I'm sure you'll gain much support and encouragement from our members, some of whom have PSC, some of whom have partners or children with PSC and a few, like me, who have had tx for PSC. Sounds like you're having quite a battle with the disease at this point. Hopefully, things will settle down somewhat and you'll be able to carry on in reasonable health. You may have a bit of arthritis in your foot/feet. That is somewhat common with this disease as is the combination of PSC and UC and perhaps, other types of inflammatory bowel disease. I'm surprised they haven't definitively said you have either PSC or PBC. I would ask your docs to be a bit more direct. As for your new husband, sounds as if he and you need to talk. You have a serious disease and he needs to know and be informed and supportive, as well as he can. You'll need his help to get through this ordeal. Good luck to you both. Aubrey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 ----- Original Message ----- From: " ine Doudrick-Ruhl " ( says to vomit on the receptionist the next time, ) Hey, ine. sounds like he has a perfect grasp on things !! Why work in a hospital if you have no compassion for the sick ?? We all know about filling out forms -- but a little common sense wouldn't hurt. I'm with . Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 ----- Original Message ----- From: " ine Doudrick-Ruhl " ( says to vomit on the receptionist the next time, ) Hey, ine. sounds like he has a perfect grasp on things !! Why work in a hospital if you have no compassion for the sick ?? We all know about filling out forms -- but a little common sense wouldn't hurt. I'm with . Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 > In the city of Lebanon, they actually lower a Lebanon Bologna at the stroke of midnight on New Years!! -------- OK ine ---- you WIN !!! This has got to beat any crazy way any of us could eat it. To think Patti wondered if we ever heard of it. Proof positive... U.S.A. Bolognaous Firstous Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 > In the city of Lebanon, they actually lower a Lebanon Bologna at the stroke of midnight on New Years!! -------- OK ine ---- you WIN !!! This has got to beat any crazy way any of us could eat it. To think Patti wondered if we ever heard of it. Proof positive... U.S.A. Bolognaous Firstous Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 > In the city of Lebanon, they actually lower a Lebanon Bologna at the stroke of midnight on New Years!! -------- OK ine ---- you WIN !!! This has got to beat any crazy way any of us could eat it. To think Patti wondered if we ever heard of it. Proof positive... U.S.A. Bolognaous Firstous Barb Quote Link to comment Share on other sites More sharing options...
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