Guest guest Posted July 9, 2001 Report Share Posted July 9, 2001 At 3:45 PM -0400 7/9/01, JEB874@... wrote: >...I have been >reading what is going on in this group and I am being scared off by > who now tells me to think twice about the surgery. ... I felt >my opinions were in lines with other more experienced in this >situation. Was I wrong?? No, Eileen, you were not wrong. But you should think at least twice about ANY major surgery, including the DS. Apparently not everybody does/did. That is a mistake. For some, it is a cakewalk. For a very few others, it teeters on Death's door--precious few, happily. And, for quite a few, there are uncomfortable weeks or months. In the end, I am happy that I had the opportunity for the DS and that I seized it. Good luck, Steve -- Steve Goldstein, age 61 Lap BPD/DS on May 2, 2001 Dr. Elariny, INOVA Fairfax Hospital, Virginia Starting (05/02/01) BMI = 51 BMI on 07/09 = 43.5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 There is an education day for families of those with CF in JAx at the Nemours clinic building this Saturday -starts at 9am . It is in the " conference rooms..Check at clinic # about it location room #'s . It is this Saturday. I was supposed to exhibit there our CF Pharmacy(Orlando).... But I received a call today & was told by the CFF chapter that I couldn't exhibit there, as I had a competiting pharmacy with the CFF Services Pharmacy & there wasn't enough room for two Rx's...They withdrew their invitation. BUT-the folks at the clinic are wonderful ,each one person. Docs RN's,all clinicans,, Therapists.... SO- PLEASE plan to go .....meet other parents ....get many more questions answered & see the other exhibitors. They will also share their info & help you learn so very much. I am so sorry I wont be there though & get to meet you. I also have a granddaughter who has CF ......18+ , almost 19 years old .She attends college in Boone N.C. Is very well & healthy & is 6ft tall. You know there is much new & we are all full of hope in our CF Families.... GO----LEARN----Meet folks who live in your town & maybe even your neighbor .............. call me, write, at any time --toll free 1- or here on line. LOVE & HUGS< GrandmomBEV (no subject) Hi I am the mother of a 6yo boy, 2yo boy and 4 month old girl. My two yo was just diagnosed with CF. I am still reeling from the load of info I recieved thursday morning from the Dr. No-one in my family has ever been diagnosed with this before so I have no one to turn to for advice and with my questions. I am terrified of what the future will bring. I have many concerns and would like to know of any sort of support group around me. I am in ville, Fl. Thanks so much. Christal Mother of Zack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 There is an education day for families of those with CF in JAx at the Nemours clinic building this Saturday -starts at 9am . It is in the " conference rooms..Check at clinic # about it location room #'s . It is this Saturday. I was supposed to exhibit there our CF Pharmacy(Orlando).... But I received a call today & was told by the CFF chapter that I couldn't exhibit there, as I had a competiting pharmacy with the CFF Services Pharmacy & there wasn't enough room for two Rx's...They withdrew their invitation. BUT-the folks at the clinic are wonderful ,each one person. Docs RN's,all clinicans,, Therapists.... SO- PLEASE plan to go .....meet other parents ....get many more questions answered & see the other exhibitors. They will also share their info & help you learn so very much. I am so sorry I wont be there though & get to meet you. I also have a granddaughter who has CF ......18+ , almost 19 years old .She attends college in Boone N.C. Is very well & healthy & is 6ft tall. You know there is much new & we are all full of hope in our CF Families.... GO----LEARN----Meet folks who live in your town & maybe even your neighbor .............. call me, write, at any time --toll free 1- or here on line. LOVE & HUGS< GrandmomBEV (no subject) Hi I am the mother of a 6yo boy, 2yo boy and 4 month old girl. My two yo was just diagnosed with CF. I am still reeling from the load of info I recieved thursday morning from the Dr. No-one in my family has ever been diagnosed with this before so I have no one to turn to for advice and with my questions. I am terrified of what the future will bring. I have many concerns and would like to know of any sort of support group around me. I am in ville, Fl. Thanks so much. Christal Mother of Zack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Welcome Christal. You will find much hope on this list. :-) It came to me when I realized that there were actually people like n who were beating the statistical odds in living longer lives. :-) Give yourself time to grieve. You will feel better for it, and then you can move on and do what you have to do to help make your two year old boy healthy. luck and wishes, Dawn mom of 4, 7 and under, the youngest wcf (no subject) Hi I am the mother of a 6yo boy, 2yo boy and 4 month old girl. My two yo was just diagnosed with CF. I am still reeling from the load of info I recieved thursday morning from the Dr. No-one in my family has ever been diagnosed with this before so I have no one to turn to for advice and with my questions. I am terrified of what the future will bring. I have many concerns and would like to know of any sort of support group around me. I am in ville, Fl. Thanks so much. Christal Mother of Zack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Christal, We have all been in the place you are in right now,First take a deep breathe, now SCREAM as loud as you can for as long as you can, and then CRY as hard as you can, now LEARN as much as you can. The first year will go by like a blur, you are in a fog and in disbelief. Remember there is no one to blame, that is the first thing and then you must remember not to treat your child any different then the way you did before you found out he was sick. If you do you will be doing all of your family a disservice but mostly your son. He needs to be able to live his life as normal as possible. The treatments and all the other things that go along with having cf have to become a way of life. MY son says cf is a part of his life it is not who he is . I have a son who is 18 now and when I look back on those years the best advice I ever received was from his doctor when he was diagnosed was not to treat him differently than his brother, if he needed a reprimand he got it and if he needed a hug he got it, He has grown into a well rounded and smart young man. His health is great he complys with his meds and most of the time with his physical therapy. Just know that we are out here if you need us at all hours of the night and day. CF Parents Rock, they stand behind each other like no other parents I have ever met, so if you had to join a group let me tell you (we would all like not to be in this one) this is the one you would want to be in. My Prayers are with you and your Family. Cindy in Ohio > >Reply-To: cfparents >To: <cfparents > >Subject: Re: (no subject) >Date: Tue, 25 Feb 2003 10:53:26 -0600 > >Welcome Christal. You will find much hope on this list. :-) It came to >me when I realized that there were actually people like n who were >beating the statistical odds in living longer lives. :-) > >Give yourself time to grieve. You will feel better for it, and then you >can move on and do what you have to do to help make your two year old boy >healthy. > >luck and wishes, >Dawn mom of 4, 7 and under, the youngest wcf > (no subject) > > > Hi I am the mother of a 6yo boy, 2yo boy and 4 month old girl. My two >yo was > just diagnosed with CF. I am still reeling from the load of info I >recieved > thursday morning from the Dr. No-one in my family has ever been >diagnosed > with this before so I have no one to turn to for advice and with my > questions. I am terrified of what the future will bring. I have many > concerns and would like to know of any sort of support group around me. >I am > in ville, Fl. Thanks so much. > > Christal > Mother of Zack > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Christal, We have all been in the place you are in right now,First take a deep breathe, now SCREAM as loud as you can for as long as you can, and then CRY as hard as you can, now LEARN as much as you can. The first year will go by like a blur, you are in a fog and in disbelief. Remember there is no one to blame, that is the first thing and then you must remember not to treat your child any different then the way you did before you found out he was sick. If you do you will be doing all of your family a disservice but mostly your son. He needs to be able to live his life as normal as possible. The treatments and all the other things that go along with having cf have to become a way of life. MY son says cf is a part of his life it is not who he is . I have a son who is 18 now and when I look back on those years the best advice I ever received was from his doctor when he was diagnosed was not to treat him differently than his brother, if he needed a reprimand he got it and if he needed a hug he got it, He has grown into a well rounded and smart young man. His health is great he complys with his meds and most of the time with his physical therapy. Just know that we are out here if you need us at all hours of the night and day. CF Parents Rock, they stand behind each other like no other parents I have ever met, so if you had to join a group let me tell you (we would all like not to be in this one) this is the one you would want to be in. My Prayers are with you and your Family. Cindy in Ohio > >Reply-To: cfparents >To: <cfparents > >Subject: Re: (no subject) >Date: Tue, 25 Feb 2003 10:53:26 -0600 > >Welcome Christal. You will find much hope on this list. :-) It came to >me when I realized that there were actually people like n who were >beating the statistical odds in living longer lives. :-) > >Give yourself time to grieve. You will feel better for it, and then you >can move on and do what you have to do to help make your two year old boy >healthy. > >luck and wishes, >Dawn mom of 4, 7 and under, the youngest wcf > (no subject) > > > Hi I am the mother of a 6yo boy, 2yo boy and 4 month old girl. My two >yo was > just diagnosed with CF. I am still reeling from the load of info I >recieved > thursday morning from the Dr. No-one in my family has ever been >diagnosed > with this before so I have no one to turn to for advice and with my > questions. I am terrified of what the future will bring. I have many > concerns and would like to know of any sort of support group around me. >I am > in ville, Fl. Thanks so much. > > Christal > Mother of Zack > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 -Christal, I don't know of any support groups in Florida but I'm glad you found us here. Sorry to hear of your diagnosis but welcome to our online family Christy Mom of Wyatt 7 wcf adn Hunter 3wocf -- In cfparents , blueyecowgrl1978@a... wrote: > Hi I am the mother of a 6yo boy, 2yo boy and 4 month old girl. My two yo was > just diagnosed with CF. I am still reeling from the load of info I recieved > thursday morning from the Dr. No-one in my family has ever been diagnosed > with this before so I have no one to turn to for advice and with my > questions. I am terrified of what the future will bring. I have many > concerns and would like to know of any sort of support group around me. I am > in ville, Fl. Thanks so much. > > Christal > Mother of Zack > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 In a message dated 3/17/2003 4:17:18 PM Central Standard Time, Patpatstoo@... writes: > Lynette My daughter was diagnosed with hydrocephalus when she was a year old (she is ten now) and they never told us anything like that. They said that in the time she was developing the tube that drains the fluid down her spine I must have had a virus or I was around chickens that carry this kind of virus that causes this kind of deformity. Her doctor asked me if I was around chickens when I was into my first 6 weeks of pregnancy and I said that has been over around and 9 months I don't remember what I did yesterday. But as far as I know I don't know were I could have been around chickens. Hope this helps Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2003 Report Share Posted March 23, 2003 In a message dated 3/22/2003 1:50:07 PM Central Standard Time, VBETEACH@... writes: > Grandma Bev----Recieved the CF calender and I must say I am impressed by the > > quality of the pictures and stories of all the pretty CF people. My girls are in that calendar they are the month of Nov!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Sharom, Ever have any thyroid issues? Just a thought. Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Sharon, Can only think of s Hopkins in Baltimore. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Ever have any thyroid issues? Just a thought. Thyroid tested normal on the blood work that the doctor did hugs SHaron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 Hi You can get a lot of the Bariatric Advantage stuff Kaiser Pharmacy. I bought the Cinnamon flavored for 8.95. You might call you local pharmacy and see if they carry the products Ramona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 Here is the list: Multi-Formula Chewable (2x's a day) Sublingual B-12 (2x's a week) Calcium Citrate (3x's a day) When you order on line be sure to use Kaiser as the 'Refered by Code' Free Shipping and you get a Kaiser Member discount. luci > > Are these the vitamins, I need to ordered, from Bariatric Advantage. > > Bariatric Advantage calcium citrate chewable lozenges. And > Chewable iron 29mg and B-12 under the tongue. > > Should I order them? > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 You also need the multivitamin, and it's up to you if you want to order from Bariatric Advantage. I do and others do, but many buy there vitamins from different places like Vida Lady, Trader Joes, Costco and I'm sure many of them will give you feed back. DonnaADARONE53@... wrote: Are these the vitamins, I need to ordered, from Bariatric Advantage. Bariatric Advantage calcium citrate chewable lozenges. And Chewable iron 29mg and B-12 under the tongue. Should I order them? Thank you Donna JordonDSJordon@... Yahoo! FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 Luci Don't forget 1 iron pill a day. DonnaLucia wrote: Here is the list:Multi-Formula Chewable (2x's a day)Sublingual B-12 (2x's a week)Calcium Citrate (3x's a day)When you order on line be sure to use Kaiser as the 'Refered by Code'Free Shipping and you get a Kaiser Member discount.luci>> Are these the vitamins, I need to ordered, from Bariatric Advantage.> > Bariatric Advantage calcium citrate chewable lozenges. And> Chewable iron 29mg and B-12 under the tongue.> > Should I order them?> > Thank you> >Donna JordonDSJordon@... Yahoo! FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Yes, I know someone who had crohn's, was on SCD, and was scoped and found clear. She still stays on the diet, pretty much. She is the one who told my husband, who was diagnosed with colitis about the diet. We already knew about the diet when my husband was diagnosed. He's been on it for about 9 weeks, and is doing great. Probably because we knew about it so quickly. He is on prednisone and asacol (1/day). He is also fanatical (like the books says to be). The diet makes so much sense. Husband colitis & SCD 10/09 Asymptomatic vs. no signs of disease Posted by: "fossil.color" fossil.color@... fossil.color Mon Dec 14, 2009 2:17 pm (PST) I was reading through an SCD blog that I stumbled upon today, and the person had been following SCD for 4 years. He ended up getting a scope done, and, though he had no symptoms and had strictly followed the SCD it showed signs of active Crohn's. This made me wonder how often this happens.I'm not doubting that the SCD can help heal your gut, but I wonder how often it helps heal the symptoms, but there is still active disease. I'm not saying that can't happen with medications as well, but are there many cases of people who go med free and SCD and find no signs of active Crohn's or UC when they get scoped? Quote Link to comment Share on other sites More sharing options...
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