Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Hi, I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. Thanks, Calypso Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Hi, I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. Thanks, Calypso Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Best advice.... Do what YOU and your son want to do, NOT only what the doc wants. I saw a GI doc once because he was an "expert" and heard about him from some other people that had UC. They all had wonderful things to say about him and so I gave him a try. On my first visit he asked me alot of questions, wasn't in a rush to get me out of his office, and seemed really great. So, I stuck with him until he wrote out prescriptions for everything from heartburn (which I told him I had ONCE from eating too much yogurt) to the actualy problme which was UC. I told him I wanted to be on as little meds as possible and work TOGETHER on this, not against each other. His response was that I either listen to his instructions and follow his advice or he will not treat me. So, I said goodbye. I found a young GI doc without all the "experience" that lets me make my own decisions. I call him up for the prescriptions/meds I want to try and he is very open to letting me have free will over what treatment course I want to follow. I always listen to his opinion and make a compromise if he disagrees with what I want to do. My opinion : If the GI doc is pushing his way or the highway, i'd take the highway and find someone willing to cooperate with you. -UC - 1+ yearsSCD - 7 months 100% strict and 4 months restricted diet.Asacol - 5 pills a dayTo: BTVC-SCD From: calypsoharmon@...Date: Wed, 3 Feb 2010 20:15:41 -0800Subject: new to the group Hi, I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. Thanks, Calypso Hotmail: Trusted email with powerful SPAM protection. Sign up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Best advice.... Do what YOU and your son want to do, NOT only what the doc wants. I saw a GI doc once because he was an "expert" and heard about him from some other people that had UC. They all had wonderful things to say about him and so I gave him a try. On my first visit he asked me alot of questions, wasn't in a rush to get me out of his office, and seemed really great. So, I stuck with him until he wrote out prescriptions for everything from heartburn (which I told him I had ONCE from eating too much yogurt) to the actualy problme which was UC. I told him I wanted to be on as little meds as possible and work TOGETHER on this, not against each other. His response was that I either listen to his instructions and follow his advice or he will not treat me. So, I said goodbye. I found a young GI doc without all the "experience" that lets me make my own decisions. I call him up for the prescriptions/meds I want to try and he is very open to letting me have free will over what treatment course I want to follow. I always listen to his opinion and make a compromise if he disagrees with what I want to do. My opinion : If the GI doc is pushing his way or the highway, i'd take the highway and find someone willing to cooperate with you. -UC - 1+ yearsSCD - 7 months 100% strict and 4 months restricted diet.Asacol - 5 pills a dayTo: BTVC-SCD From: calypsoharmon@...Date: Wed, 3 Feb 2010 20:15:41 -0800Subject: new to the group Hi, I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. Thanks, Calypso Hotmail: Trusted email with powerful SPAM protection. Sign up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 I don't know that I have any advice but I went on IV steroids when I was 16 and had to go on 6MP to taper off. Until switching to Lialda and starting SCD I wasn't able to get off of the prednisone completely but I did keep from flaring with a really low dose (2.5mgs). There's no way I could say for sure that the 6MP helped me taper down but I was able to get down pretty low while on it. I never suffered any ill effects from the 6MP; I did from the prednisone. Congratulations on getting him off the IV steroids though! That transition was incredibly painful for me. I had 3 nights where I was up crying because my knees hurt so badly. So that's my experience with it. I think if I had to do it over again I would have done the same thing if only because I would do pretty much anything to get off the steroids. Oh - doing rowasa helped settle my system as well. It's no fun but (for me) it makes a noticeable difference. Good luck! I hope your son feels better soon! And good for you for starting him on SCD this early! Stacey > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 I don't know that I have any advice but I went on IV steroids when I was 16 and had to go on 6MP to taper off. Until switching to Lialda and starting SCD I wasn't able to get off of the prednisone completely but I did keep from flaring with a really low dose (2.5mgs). There's no way I could say for sure that the 6MP helped me taper down but I was able to get down pretty low while on it. I never suffered any ill effects from the 6MP; I did from the prednisone. Congratulations on getting him off the IV steroids though! That transition was incredibly painful for me. I had 3 nights where I was up crying because my knees hurt so badly. So that's my experience with it. I think if I had to do it over again I would have done the same thing if only because I would do pretty much anything to get off the steroids. Oh - doing rowasa helped settle my system as well. It's no fun but (for me) it makes a noticeable difference. Good luck! I hope your son feels better soon! And good for you for starting him on SCD this early! Stacey > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 HI My son was recently diagnosed with Crohn's. He did not have to be on the IV steroid but has had to take the oral a few different times since March. We are tapering him off of them right now (down to 5mg/day) he was started on 6MP back in August when he was finally diagnosed and we still are not at a level that is controlling the diarrhea. the process of getting then to a therapeutic level is VERY slow. So even having been on the Prednisone for weeks now, he stiil has symptoms. Our GI said that a person can actually stop responding to the steroid-in term of it being as fast-acting as it was in the beginning. I am starting my son on the diet in a week and very much look forward to getting him off the meds (down the road) and seeing him get his strength and energy back. You can Google any of these meds or go to " WebMD " and put in the med you want information on and it will have it there. Good luck with your son. I know how frustrating this can be and we often do not get a complete and thorough answer from the docs. This is why we do our own research. Good health to your son and husband, Sherry > > Hi, > I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. > > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > > Thanks, > Calypso > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 HI My son was recently diagnosed with Crohn's. He did not have to be on the IV steroid but has had to take the oral a few different times since March. We are tapering him off of them right now (down to 5mg/day) he was started on 6MP back in August when he was finally diagnosed and we still are not at a level that is controlling the diarrhea. the process of getting then to a therapeutic level is VERY slow. So even having been on the Prednisone for weeks now, he stiil has symptoms. Our GI said that a person can actually stop responding to the steroid-in term of it being as fast-acting as it was in the beginning. I am starting my son on the diet in a week and very much look forward to getting him off the meds (down the road) and seeing him get his strength and energy back. You can Google any of these meds or go to " WebMD " and put in the med you want information on and it will have it there. Good luck with your son. I know how frustrating this can be and we often do not get a complete and thorough answer from the docs. This is why we do our own research. Good health to your son and husband, Sherry > > Hi, > I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. > > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > > Thanks, > Calypso > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Calypso,Is your son on the diet now? Prednisone will only mask the symptoms, it isn't a cure and eventually they will label him 'steroid dependent' because he won't be able to taper off without having a flare -- much like he is doing now. Prednisone tends to raise blood sugar and if he has a yeast problem, it will contribute to making it worse.The 6MP will suppress his immune system so that it can again 'ignore' the inflammation and damage that is going on in his gut. Again, it isn't a cure, it is only masking the symptoms while worsening his long term health. 6MP is slow to start acting and could take at a minimun weeks to take effect and regular blood tests will be necessary to make sure his immune system isn't too suppressed and that damage isn't happening to other organs. My husband couldn't use it because even at 1/2 the regular dose only every other day it would knock his immune system too low. Has the doctor discussed Asacol (orally or suppository)? Or possibly prednisone suppositories? Suppositories can be a much better option unless the entire colon/upper colon is involved. That way the medicine gets to the part that needs it instead of the entire body. All of these drugs can be of good use under the right circumstances. Sometimes the gut is so inflammed that almost all food will be rejected -- even good healing food--so these medications are good at 'buying' a bit of time so that nourishing food can help heal the gut. Like I said, they help mask the symptoms, they are not a cure, and they will eventually stop working unless the underlying problem is address.Another thing to consider is to investigate Low Dose Naltrexone (LDN). http://www.lowdosenaltrexone.org There is some recent research that shows it is a strong, properly functioning immune system that is needed, not a suppressed one. LDN helps boost the immune system. It is an FDA approved, out of patent drug that was designed for another purpose, but used in low doses actually has come to give amazing help to people with all sorts of autoimmune diseases, cancer, AIDS, etc. Amelia.Husband UC 9 years, SCD 19 monthsLDN 3mg To: BTVC-SCD Sent: Thu, February 4, 2010 4:15:41 AMSubject: new to the group Hi, I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. Thanks, Calypso Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Calypso,Is your son on the diet now? Prednisone will only mask the symptoms, it isn't a cure and eventually they will label him 'steroid dependent' because he won't be able to taper off without having a flare -- much like he is doing now. Prednisone tends to raise blood sugar and if he has a yeast problem, it will contribute to making it worse.The 6MP will suppress his immune system so that it can again 'ignore' the inflammation and damage that is going on in his gut. Again, it isn't a cure, it is only masking the symptoms while worsening his long term health. 6MP is slow to start acting and could take at a minimun weeks to take effect and regular blood tests will be necessary to make sure his immune system isn't too suppressed and that damage isn't happening to other organs. My husband couldn't use it because even at 1/2 the regular dose only every other day it would knock his immune system too low. Has the doctor discussed Asacol (orally or suppository)? Or possibly prednisone suppositories? Suppositories can be a much better option unless the entire colon/upper colon is involved. That way the medicine gets to the part that needs it instead of the entire body. All of these drugs can be of good use under the right circumstances. Sometimes the gut is so inflammed that almost all food will be rejected -- even good healing food--so these medications are good at 'buying' a bit of time so that nourishing food can help heal the gut. Like I said, they help mask the symptoms, they are not a cure, and they will eventually stop working unless the underlying problem is address.Another thing to consider is to investigate Low Dose Naltrexone (LDN). http://www.lowdosenaltrexone.org There is some recent research that shows it is a strong, properly functioning immune system that is needed, not a suppressed one. LDN helps boost the immune system. It is an FDA approved, out of patent drug that was designed for another purpose, but used in low doses actually has come to give amazing help to people with all sorts of autoimmune diseases, cancer, AIDS, etc. Amelia.Husband UC 9 years, SCD 19 monthsLDN 3mg To: BTVC-SCD Sent: Thu, February 4, 2010 4:15:41 AMSubject: new to the group Hi, I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. Thanks, Calypso Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Amelia, Thanks for taking the time to respond to my post. Yes, he has been on the diet since we first suspected uc- the beginning of November. (Only three weeks after his first symptoms.) He was off the diet for several days when he was hospitalized in December. He is eating between a half cup to a whole cup of dripped yogurt(homemade, 24 hour fermented)each day. In addition to prednisolone, he is currently he is taking Apriso, a newer anti-inflamatory, which they swiched him to after he had an allergic reation to sulfasalazine. (They chose Apriso because we can open the capsles to make them easier to swallow.) His entire colon is inflamed, so I don't think suppositories will work for him. The LDN peaked my interest, anyone familar with trying it with children? I realize the medicines just mask symptoms, but he needed steroids to stop the bleeding- the diet alone was not working quickly enough for him to recover on his own. I'm totally committed to the diet. My husband and his bother were both diagnosed with ulcerative colitis within months of each other. My husband stuck with the diet, while his bother only tried it for a month, but couldn't handle the the die off symptoms. My husband is currently off all medications, while his brother needed a total colectomy. Maybe its not accurate to compare the two, but in my mind the diet is responsible for keeping my husband's body intact and whole. Thanks for listening, Calypso > > Calypso, > > Is your son on the diet now? > > Prednisone will only mask the symptoms, it isn't a cure and eventually they will label him 'steroid dependent' because he won't be able to taper off without having a flare -- much like he is doing now. Prednisone tends to raise blood sugar and if he has a yeast problem, it will contribute to making it worse. > > The 6MP will suppress his immune system so that it can again 'ignore' the inflammation and damage that is going on in his gut. Again, it isn't a cure, it is only masking the symptoms while worsening his long term health. 6MP is slow to start acting and could take at a minimun weeks to take effect and regular blood tests will be necessary to make sure his immune system isn't too suppressed and that damage isn't happening to other organs. My husband couldn't use it because even at 1/2 the regular dose only every other day it would knock his immune system too low. > > Has the doctor discussed Asacol (orally or suppository)? Or possibly prednisone suppositories? Suppositories can be a much better option unless the entire colon/upper colon is involved. That way the medicine gets to the part that needs it instead of the entire body. > > > All of these drugs can be of good use under the right circumstances. > Sometimes the gut is so inflammed that almost all food will be > rejected -- even good healing food--so these medications are good at > 'buying' a bit of time so that nourishing food can help heal the gut. Like I said, they help mask the symptoms, they are not a cure, and they will eventually stop working unless the underlying problem is address. > > Another thing to consider is to investigate Low Dose Naltrexone (LDN). http://www.lowdosenaltrexone.org There is some recent research that shows it is a strong, properly functioning immune system that is needed, not a suppressed one. LDN helps boost the immune system. It is an FDA approved, out of patent drug that was designed for another purpose, but used in low doses actually has come to give amazing help to people with all sorts of autoimmune diseases, cancer, AIDS, etc. > > Amelia. > Husband UC 9 years, SCD 19 months > LDN 3mg > > > > > ________________________________ > > To: BTVC-SCD > Sent: Thu, February 4, 2010 4:15:41 AM > Subject: new to the group > > > Hi, > I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. > > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > > Thanks, > Calypso > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Amelia, Thanks for taking the time to respond to my post. Yes, he has been on the diet since we first suspected uc- the beginning of November. (Only three weeks after his first symptoms.) He was off the diet for several days when he was hospitalized in December. He is eating between a half cup to a whole cup of dripped yogurt(homemade, 24 hour fermented)each day. In addition to prednisolone, he is currently he is taking Apriso, a newer anti-inflamatory, which they swiched him to after he had an allergic reation to sulfasalazine. (They chose Apriso because we can open the capsles to make them easier to swallow.) His entire colon is inflamed, so I don't think suppositories will work for him. The LDN peaked my interest, anyone familar with trying it with children? I realize the medicines just mask symptoms, but he needed steroids to stop the bleeding- the diet alone was not working quickly enough for him to recover on his own. I'm totally committed to the diet. My husband and his bother were both diagnosed with ulcerative colitis within months of each other. My husband stuck with the diet, while his bother only tried it for a month, but couldn't handle the the die off symptoms. My husband is currently off all medications, while his brother needed a total colectomy. Maybe its not accurate to compare the two, but in my mind the diet is responsible for keeping my husband's body intact and whole. Thanks for listening, Calypso > > Calypso, > > Is your son on the diet now? > > Prednisone will only mask the symptoms, it isn't a cure and eventually they will label him 'steroid dependent' because he won't be able to taper off without having a flare -- much like he is doing now. Prednisone tends to raise blood sugar and if he has a yeast problem, it will contribute to making it worse. > > The 6MP will suppress his immune system so that it can again 'ignore' the inflammation and damage that is going on in his gut. Again, it isn't a cure, it is only masking the symptoms while worsening his long term health. 6MP is slow to start acting and could take at a minimun weeks to take effect and regular blood tests will be necessary to make sure his immune system isn't too suppressed and that damage isn't happening to other organs. My husband couldn't use it because even at 1/2 the regular dose only every other day it would knock his immune system too low. > > Has the doctor discussed Asacol (orally or suppository)? Or possibly prednisone suppositories? Suppositories can be a much better option unless the entire colon/upper colon is involved. That way the medicine gets to the part that needs it instead of the entire body. > > > All of these drugs can be of good use under the right circumstances. > Sometimes the gut is so inflammed that almost all food will be > rejected -- even good healing food--so these medications are good at > 'buying' a bit of time so that nourishing food can help heal the gut. Like I said, they help mask the symptoms, they are not a cure, and they will eventually stop working unless the underlying problem is address. > > Another thing to consider is to investigate Low Dose Naltrexone (LDN). http://www.lowdosenaltrexone.org There is some recent research that shows it is a strong, properly functioning immune system that is needed, not a suppressed one. LDN helps boost the immune system. It is an FDA approved, out of patent drug that was designed for another purpose, but used in low doses actually has come to give amazing help to people with all sorts of autoimmune diseases, cancer, AIDS, etc. > > Amelia. > Husband UC 9 years, SCD 19 months > LDN 3mg > > > > > ________________________________ > > To: BTVC-SCD > Sent: Thu, February 4, 2010 4:15:41 AM > Subject: new to the group > > > Hi, > I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. > > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > > Thanks, > Calypso > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 At 02:14 PM 2/4/2010, you wrote: The LDN peaked my interest, anyone familar with trying it with children? Dr. Jacquelyn McCandles has. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 At 02:14 PM 2/4/2010, you wrote: The LDN peaked my interest, anyone familar with trying it with children? Dr. Jacquelyn McCandles has. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Calypso,As I was writing my last message, I was thinking about how you should know already all of what I was saying! Glad that you did! My husband was the same regarding bleeding--the die-off so great and so prolonged that he didn't see much improvement without medication. He had some brief periods of very little or no bleeding over the last 19 months, but not much. The doctor has spent the last year trying to raise his iron levels, with me trying to get her to understand and test for iron sequestering. He couldn't take high dose iron and the mild supplement he was taking was no longer carried at our local shop. He too went off and on different medications. This last time he tried a prednisone taper it didn't do anything for his symptoms --which was mostly only bleeding and urgency b/c of the bleeding. He started s. boulardii at about the same time as he decided to try the asacol suppositories again. Within a day or so his bleeding stopped--which is why I mentioned them to you.I have not heard of regular LDN use in children with colitis much, BUT, I do know that more and more parents of Autistic Spectrum Disorders are trying it with good results for their children. Maybe you can research in that way to find some data. I do know that with the extra probiotics, the LDN, and the asacol (1 x daily) my husband feels really good and is happy with his lack of symptoms. He does still have some fatigue issues, but I think over time they will get better -- especially if I can get mine under control and go to bed at a decent hour! ; )It sounds like your son is responding to the medication now, which is good. Also, even though it is easier to take by opening the capsules, isn't that also basically doing away with the time release benefit of the capsule? I really fought my husband about the 6MP. It is a drug used to suppress the immune system so that cancer therapy works better, but it itself can cause leukemia in the long term, even after one has stopped taking it. I would definitely hold off on those kinds of drugs if you can. It seems like I am reading through this group that more and more doctors are recommending the 'last stage' type drugs right off the bat. Not sure why, but I don't think that is a good trend.Amelia.Husband UC 9 years, SCD 19 monthsLDN 3mgTo: BTVC-SCD Sent: Thu, February 4, 2010 8:14:36 PMSubject: Re: new to the group Amelia, Thanks for taking the time to respond to my post. Yes, he has been on the diet since we first suspected uc- the beginning of November. (Only three weeks after his first symptoms.) He was off the diet for several days when he was hospitalized in December. He is eating between a half cup to a whole cup of dripped yogurt(homemade, 24 hour fermented)each day. In addition to prednisolone, he is currently he is taking Apriso, a newer anti-inflamatory, which they swiched him to after he had an allergic reation to sulfasalazine. (They chose Apriso because we can open the capsles to make them easier to swallow.) His entire colon is inflamed, so I don't think suppositories will work for him. The LDN peaked my interest, anyone familar with trying it with children? I realize the medicines just mask symptoms, but he needed steroids to stop the bleeding- the diet alone was not working quickly enough for him to recover on his own. I'm totally committed to the diet. My husband and his bother were both diagnosed with ulcerative colitis within months of each other. My husband stuck with the diet, while his bother only tried it for a month, but couldn't handle the the die off symptoms. My husband is currently off all medications, while his brother needed a total colectomy. Maybe its not accurate to compare the two, but in my mind the diet is responsible for keeping my husband's body intact and whole. Thanks for listening, Calypso > > Calypso, > > Is your son on the diet now? > > Prednisone will only mask the symptoms, it isn't a cure and eventually they will label him 'steroid dependent' because he won't be able to taper off without having a flare -- much like he is doing now. Prednisone tends to raise blood sugar and if he has a yeast problem, it will contribute to making it worse. > > The 6MP will suppress his immune system so that it can again 'ignore' the inflammation and damage that is going on in his gut. Again, it isn't a cure, it is only masking the symptoms while worsening his long term health. 6MP is slow to start acting and could take at a minimun weeks to take effect and regular blood tests will be necessary to make sure his immune system isn't too suppressed and that damage isn't happening to other organs. My husband couldn't use it because even at 1/2 the regular dose only every other day it would knock his immune system too low. > > Has the doctor discussed Asacol (orally or suppository) ? Or possibly prednisone suppositories? Suppositories can be a much better option unless the entire colon/upper colon is involved. That way the medicine gets to the part that needs it instead of the entire body. > > > All of these drugs can be of good use under the right circumstances. > Sometimes the gut is so inflammed that almost all food will be > rejected -- even good healing food--so these medications are good at > 'buying' a bit of time so that nourishing food can help heal the gut. Like I said, they help mask the symptoms, they are not a cure, and they will eventually stop working unless the underlying problem is address. > > Another thing to consider is to investigate Low Dose Naltrexone (LDN). http://www.lowdosen altrexone. org There is some recent research that shows it is a strong, properly functioning immune system that is needed, not a suppressed one. LDN helps boost the immune system. It is an FDA approved, out of patent drug that was designed for another purpose, but used in low doses actually has come to give amazing help to people with all sorts of autoimmune diseases, cancer, AIDS, etc. > > Amelia. > Husband UC 9 years, SCD 19 months > LDN 3mg > > > > > ____________ _________ _________ __ > From: Calypso Harmon <calypsoharmon@ ...> > To: BTVC-SCD@yahoogroup s.com > Sent: Thu, February 4, 2010 4:15:41 AM > Subject: new to the group > > > Hi, > I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. > > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > > Thanks, > Calypso > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Calypso,As I was writing my last message, I was thinking about how you should know already all of what I was saying! Glad that you did! My husband was the same regarding bleeding--the die-off so great and so prolonged that he didn't see much improvement without medication. He had some brief periods of very little or no bleeding over the last 19 months, but not much. The doctor has spent the last year trying to raise his iron levels, with me trying to get her to understand and test for iron sequestering. He couldn't take high dose iron and the mild supplement he was taking was no longer carried at our local shop. He too went off and on different medications. This last time he tried a prednisone taper it didn't do anything for his symptoms --which was mostly only bleeding and urgency b/c of the bleeding. He started s. boulardii at about the same time as he decided to try the asacol suppositories again. Within a day or so his bleeding stopped--which is why I mentioned them to you.I have not heard of regular LDN use in children with colitis much, BUT, I do know that more and more parents of Autistic Spectrum Disorders are trying it with good results for their children. Maybe you can research in that way to find some data. I do know that with the extra probiotics, the LDN, and the asacol (1 x daily) my husband feels really good and is happy with his lack of symptoms. He does still have some fatigue issues, but I think over time they will get better -- especially if I can get mine under control and go to bed at a decent hour! ; )It sounds like your son is responding to the medication now, which is good. Also, even though it is easier to take by opening the capsules, isn't that also basically doing away with the time release benefit of the capsule? I really fought my husband about the 6MP. It is a drug used to suppress the immune system so that cancer therapy works better, but it itself can cause leukemia in the long term, even after one has stopped taking it. I would definitely hold off on those kinds of drugs if you can. It seems like I am reading through this group that more and more doctors are recommending the 'last stage' type drugs right off the bat. Not sure why, but I don't think that is a good trend.Amelia.Husband UC 9 years, SCD 19 monthsLDN 3mgTo: BTVC-SCD Sent: Thu, February 4, 2010 8:14:36 PMSubject: Re: new to the group Amelia, Thanks for taking the time to respond to my post. Yes, he has been on the diet since we first suspected uc- the beginning of November. (Only three weeks after his first symptoms.) He was off the diet for several days when he was hospitalized in December. He is eating between a half cup to a whole cup of dripped yogurt(homemade, 24 hour fermented)each day. In addition to prednisolone, he is currently he is taking Apriso, a newer anti-inflamatory, which they swiched him to after he had an allergic reation to sulfasalazine. (They chose Apriso because we can open the capsles to make them easier to swallow.) His entire colon is inflamed, so I don't think suppositories will work for him. The LDN peaked my interest, anyone familar with trying it with children? I realize the medicines just mask symptoms, but he needed steroids to stop the bleeding- the diet alone was not working quickly enough for him to recover on his own. I'm totally committed to the diet. My husband and his bother were both diagnosed with ulcerative colitis within months of each other. My husband stuck with the diet, while his bother only tried it for a month, but couldn't handle the the die off symptoms. My husband is currently off all medications, while his brother needed a total colectomy. Maybe its not accurate to compare the two, but in my mind the diet is responsible for keeping my husband's body intact and whole. Thanks for listening, Calypso > > Calypso, > > Is your son on the diet now? > > Prednisone will only mask the symptoms, it isn't a cure and eventually they will label him 'steroid dependent' because he won't be able to taper off without having a flare -- much like he is doing now. Prednisone tends to raise blood sugar and if he has a yeast problem, it will contribute to making it worse. > > The 6MP will suppress his immune system so that it can again 'ignore' the inflammation and damage that is going on in his gut. Again, it isn't a cure, it is only masking the symptoms while worsening his long term health. 6MP is slow to start acting and could take at a minimun weeks to take effect and regular blood tests will be necessary to make sure his immune system isn't too suppressed and that damage isn't happening to other organs. My husband couldn't use it because even at 1/2 the regular dose only every other day it would knock his immune system too low. > > Has the doctor discussed Asacol (orally or suppository) ? Or possibly prednisone suppositories? Suppositories can be a much better option unless the entire colon/upper colon is involved. That way the medicine gets to the part that needs it instead of the entire body. > > > All of these drugs can be of good use under the right circumstances. > Sometimes the gut is so inflammed that almost all food will be > rejected -- even good healing food--so these medications are good at > 'buying' a bit of time so that nourishing food can help heal the gut. Like I said, they help mask the symptoms, they are not a cure, and they will eventually stop working unless the underlying problem is address. > > Another thing to consider is to investigate Low Dose Naltrexone (LDN). http://www.lowdosen altrexone. org There is some recent research that shows it is a strong, properly functioning immune system that is needed, not a suppressed one. LDN helps boost the immune system. It is an FDA approved, out of patent drug that was designed for another purpose, but used in low doses actually has come to give amazing help to people with all sorts of autoimmune diseases, cancer, AIDS, etc. > > Amelia. > Husband UC 9 years, SCD 19 months > LDN 3mg > > > > > ____________ _________ _________ __ > From: Calypso Harmon <calypsoharmon@ ...> > To: BTVC-SCD@yahoogroup s.com > Sent: Thu, February 4, 2010 4:15:41 AM > Subject: new to the group > > > Hi, > I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. > > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > > Thanks, > Calypso > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Calypso,His entire colon is inflamed, so I don't think suppositories will work for him. The LDN peaked my interest, anyone familar with trying it with children?I realize the medicines just mask symptoms, but he needed steroids to stop the bleeding- the diet alone was not working quickly enough for him to recover on his own. Dr. McCandless' group on yahoo. It's for kids with autistic symptoms, butshe also has kids with UC/Crohn's:http://health.groups.yahoo.com/group/Autism_LDN/But you can't take LDN at the same time as steroids - and watch out withthe steroids, as raised blood sugar can create an overpopulation ofyeast, which also has the effect of blocking the positive effects of the LDN. So she has an anti yeast protocol as well. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Calypso,His entire colon is inflamed, so I don't think suppositories will work for him. The LDN peaked my interest, anyone familar with trying it with children?I realize the medicines just mask symptoms, but he needed steroids to stop the bleeding- the diet alone was not working quickly enough for him to recover on his own. Dr. McCandless' group on yahoo. It's for kids with autistic symptoms, butshe also has kids with UC/Crohn's:http://health.groups.yahoo.com/group/Autism_LDN/But you can't take LDN at the same time as steroids - and watch out withthe steroids, as raised blood sugar can create an overpopulation ofyeast, which also has the effect of blocking the positive effects of the LDN. So she has an anti yeast protocol as well. Mara Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.