Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 Hi, Ian and everyone else. I don't know if Pat received word you are asking about her. As usual I am behind on reading posts from the group but am in regular contact with Pat and am CC'ing her so she can reply if she has not done so already. It's 3AM here already and I am still too wound up to go to bed. I have found it is is too stressful for me to "correct" my sleep cycle disorder so I simply go to bed late and get up 7-8 hours later. I cannot take RX sleep medicines because of side effects. Pat (formerly from England) will probably be interested in knowing there are new members of this group from Holland and that my daughter will be traveling for the third time next month to London on business. Margie in MOPSC DX 3/99Re: PATRICIA STEWART?? Characteristics and Long-term Prognosis of thPosted by: "Ian Cribb" icribb@... i_cribbSun Feb 8, 2009 9:16 pm (PST),Is every thing okay? In 2008 we got over a hundred posts from you (withlinks to articles), but so far this year this is the only one? How come?What's happening with you?Ian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Re: PATRICIA STEWART?? Characteristics and Long-term Prognosis of thPosted by: "Ian Cribb" icribb (AT) gmail (DOT) com i_cribbSun Feb 8, 2009 9:16 pm (PST),Is every thing okay? In 2008 we got over a hundred posts from you (withlinks to articles), but so far this year this is the only one? How come?What's happening with you?Ian Hello Ian and thanks Margie, Ian, thanks so much for your concern. I don't really read the posts any more but did (as you mentioned) continue to upload articles that may be of interest. Margie forwarded me the post from you. I hadn't really been reading the posts much as I've been busy dealing with some my other health "issues". I still don't have a formal Dx of PSC despite all pointing in that direction. I've been on the (PSC) symptom road since 1999 and suffered an acute infected necrotising pancreatitis following my first (and last!) ERCP! This really destroyed what was left of my health. After the last hepatologist at the Amsterdam Medical Center told me I was a "self fulfilling prophecy looking for a disease until I had it"!!! (my translation from the Dutch), I decided to leave the subject until/if (self fulfilling prophecy or not) the evidence presented itself. I was unable to tolerate the URSO in any case so apart from waiting there's not much else to do........ Last year was quite a struggle. I now have a 4mm stenosis at the suture line of my ileorectal anastomosis (toxic megacolon) from 1984 (UC since 1957). There are now some "wandering" masses in my retained rectum too and the last one was Dx as Paneth cell metaplasia. A wait and see type of mass whose cell type "belongs" in the ileum. Due to all my previous surgeries - 11 in all - no-one wants to touch me with a barge pole, let alone a scalpel and I don't want a "standard" stoma (had 2 already), I want a continent type. There are endless discussions between my UK group (I go to St. Mark's Hospital in London) and my current bunch in the Leiden Academic Medical Center.... and ME.... being the most difficult, of course. They don't do the continent type stoma in Holland anyway and I live here now. I am due to have the stenosis dilated up but again, no-one wants this risky PITA patient on their list!!! Also during last year I had 9x pneumonia and a 6-MP immunosuppression crisis necessitating systemic anti-virals. I'm now back on 6-MP and the dreaded pred. I could go on!! I could have just said, I couldn't even get round to reading all the journals in order to post along to the group. However, I thought you deserved a better explanation.... I'm trying to be funny here... ha ha! I'll try and get back to my "usual" self ASAP. Again, thanks for your concern, DutchPat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Re: PATRICIA STEWART?? Characteristics and Long-term Prognosis of thPosted by: "Ian Cribb" icribb (AT) gmail (DOT) com i_cribbSun Feb 8, 2009 9:16 pm (PST),Is every thing okay? In 2008 we got over a hundred posts from you (withlinks to articles), but so far this year this is the only one? How come?What's happening with you?Ian Hello Ian and thanks Margie, Ian, thanks so much for your concern. I don't really read the posts any more but did (as you mentioned) continue to upload articles that may be of interest. Margie forwarded me the post from you. I hadn't really been reading the posts much as I've been busy dealing with some my other health "issues". I still don't have a formal Dx of PSC despite all pointing in that direction. I've been on the (PSC) symptom road since 1999 and suffered an acute infected necrotising pancreatitis following my first (and last!) ERCP! This really destroyed what was left of my health. After the last hepatologist at the Amsterdam Medical Center told me I was a "self fulfilling prophecy looking for a disease until I had it"!!! (my translation from the Dutch), I decided to leave the subject until/if (self fulfilling prophecy or not) the evidence presented itself. I was unable to tolerate the URSO in any case so apart from waiting there's not much else to do........ Last year was quite a struggle. I now have a 4mm stenosis at the suture line of my ileorectal anastomosis (toxic megacolon) from 1984 (UC since 1957). There are now some "wandering" masses in my retained rectum too and the last one was Dx as Paneth cell metaplasia. A wait and see type of mass whose cell type "belongs" in the ileum. Due to all my previous surgeries - 11 in all - no-one wants to touch me with a barge pole, let alone a scalpel and I don't want a "standard" stoma (had 2 already), I want a continent type. There are endless discussions between my UK group (I go to St. Mark's Hospital in London) and my current bunch in the Leiden Academic Medical Center.... and ME.... being the most difficult, of course. They don't do the continent type stoma in Holland anyway and I live here now. I am due to have the stenosis dilated up but again, no-one wants this risky PITA patient on their list!!! Also during last year I had 9x pneumonia and a 6-MP immunosuppression crisis necessitating systemic anti-virals. I'm now back on 6-MP and the dreaded pred. I could go on!! I could have just said, I couldn't even get round to reading all the journals in order to post along to the group. However, I thought you deserved a better explanation.... I'm trying to be funny here... ha ha! I'll try and get back to my "usual" self ASAP. Again, thanks for your concern, DutchPat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Re: PATRICIA STEWART?? Characteristics and Long-term Prognosis of thPosted by: "Ian Cribb" icribb (AT) gmail (DOT) com i_cribbSun Feb 8, 2009 9:16 pm (PST),Is every thing okay? In 2008 we got over a hundred posts from you (withlinks to articles), but so far this year this is the only one? How come?What's happening with you?Ian Hello Ian and thanks Margie, Ian, thanks so much for your concern. I don't really read the posts any more but did (as you mentioned) continue to upload articles that may be of interest. Margie forwarded me the post from you. I hadn't really been reading the posts much as I've been busy dealing with some my other health "issues". I still don't have a formal Dx of PSC despite all pointing in that direction. I've been on the (PSC) symptom road since 1999 and suffered an acute infected necrotising pancreatitis following my first (and last!) ERCP! This really destroyed what was left of my health. After the last hepatologist at the Amsterdam Medical Center told me I was a "self fulfilling prophecy looking for a disease until I had it"!!! (my translation from the Dutch), I decided to leave the subject until/if (self fulfilling prophecy or not) the evidence presented itself. I was unable to tolerate the URSO in any case so apart from waiting there's not much else to do........ Last year was quite a struggle. I now have a 4mm stenosis at the suture line of my ileorectal anastomosis (toxic megacolon) from 1984 (UC since 1957). There are now some "wandering" masses in my retained rectum too and the last one was Dx as Paneth cell metaplasia. A wait and see type of mass whose cell type "belongs" in the ileum. Due to all my previous surgeries - 11 in all - no-one wants to touch me with a barge pole, let alone a scalpel and I don't want a "standard" stoma (had 2 already), I want a continent type. There are endless discussions between my UK group (I go to St. Mark's Hospital in London) and my current bunch in the Leiden Academic Medical Center.... and ME.... being the most difficult, of course. They don't do the continent type stoma in Holland anyway and I live here now. I am due to have the stenosis dilated up but again, no-one wants this risky PITA patient on their list!!! Also during last year I had 9x pneumonia and a 6-MP immunosuppression crisis necessitating systemic anti-virals. I'm now back on 6-MP and the dreaded pred. I could go on!! I could have just said, I couldn't even get round to reading all the journals in order to post along to the group. However, I thought you deserved a better explanation.... I'm trying to be funny here... ha ha! I'll try and get back to my "usual" self ASAP. Again, thanks for your concern, DutchPat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Pat, It is good to hear from you but sorry to hear of all the problems you are having. We are like a struggling family here and when one doesn't check in we all begin to worry. Take care of yourself and check in when you can! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Pat, It is good to hear from you but sorry to hear of all the problems you are having. We are like a struggling family here and when one doesn't check in we all begin to worry. Take care of yourself and check in when you can! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Pat, It is good to hear from you but sorry to hear of all the problems you are having. We are like a struggling family here and when one doesn't check in we all begin to worry. Take care of yourself and check in when you can! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Hi Pat Thanks for taking the time (and effort) to check in. Echoing Bettyann, sorry to hear of the problems you are having and do hope things will be resolved in the best way possible as soon as possible. Best wishes in New Zealand > > Pat, It is good to hear from you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Hi Pat Thanks for taking the time (and effort) to check in. Echoing Bettyann, sorry to hear of the problems you are having and do hope things will be resolved in the best way possible as soon as possible. Best wishes in New Zealand > > Pat, It is good to hear from you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Hi Pat Thanks for taking the time (and effort) to check in. Echoing Bettyann, sorry to hear of the problems you are having and do hope things will be resolved in the best way possible as soon as possible. Best wishes in New Zealand > > Pat, It is good to hear from you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 DutchPat, I'm so glad to hear from you even if it did take some prodding! And I'm very sorry you've had some health issues. Doctors just have to appreciate patients like us! If nothing else we keep them busy doing research in order to treat us. Blessings, Barby - KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 DutchPat, I'm so glad to hear from you even if it did take some prodding! And I'm very sorry you've had some health issues. Doctors just have to appreciate patients like us! If nothing else we keep them busy doing research in order to treat us. Blessings, Barby - KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 DutchPat, I'm so glad to hear from you even if it did take some prodding! And I'm very sorry you've had some health issues. Doctors just have to appreciate patients like us! If nothing else we keep them busy doing research in order to treat us. Blessings, Barby - KS Quote Link to comment Share on other sites More sharing options...
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