Guest guest Posted March 19, 2009 Report Share Posted March 19, 2009 Jodi, >> Do you know the success rate of people that need surgery that also do the SCD long term? What about recurrence of the disease? << No, I don't -- because people who are successful on SCD tend to leave the lists and get on about their lives -- only a few of us stay to teach. (And I'm eternally grateful to the wonderful people who do, because there is no way I could answer all the questions and still have a life!) If you'd like, I can ask , , and Lucy if they know. What I do know is that Turet, founder of the Long Island List, did not need surgery for her gut. Charlene, who was a moderator on Long Island, did have surgery, but I don't know the details, because that was around the time of Katrina, and I wasn't online very much. Lucy, of Lucy's Kitchen Shop, did not need surgery for her gut. Krivel, who did the first BTVC website, did not need surgery for her gut, although she is dealing with a number of other co-ailments. My grandmother died of complications of diverticulitis. My mother was just in hospital because of diverticulitis. I just had a colonoscopy, and there was no sign of diverticulitis. Kim Hesche's husband is doing great on SCD >> I had my small bowel series today and my whole right side is involved with *seen* strictures in the following areas; Transverse, proximal hepatic flexure, right colon, ileocecal valve, terminal ileum. << My gut aches, just thinking about all that. >> I also have a mass in the colon it *might* be dysplasia in the ascending colon. It might be stool built up which is questionable since significant stool build up (to see almost two inches on screen) would most likely cause an obstruction. The doc said he did see what looked like a polyp right under this mass. Anyway, we will know more after the colonoscopy. I am used to bad news and I just don't like getting ahead of myself. << Do you know where your towel is? (From Hitchhiker's Guide to the Galaxy.) Also translated as, " Don't Panic! " Keep in mind that a polyp does not necessarily mean cancer. And think about what shape things would be in if you hadn't had this last year on the best diet in the world for gut issues. >> The doc looked at me in disbelief and kept saying " I cannot believe you don't have more symptoms " anyway I will talk more about this in a following post.. << Bet he wouldn't believe that diet had anything to do with it! >> For now.. They want to see what is going on inside and also if I have no disease on left side (which means I am back to having Classic Crohn's) than I may be a very good candidate for surgery. ly, if there is any Cancer I just want it out. << Stricture surgery? And yes, if there's cancer, you want it out. However, you will also want to look at nutritional support for cancer, should it be that, and also LDN. >> I am staying on this diet- there is no question. Just wondering what success people have with not having recurrence after surgery and being on the diet? << I remember that Elaine felt that SCD was the best possible diet before, during, and after surgery to prevent disease recurrence. I can remember that in my early days on Long Island, when Elaine was participating, there were people who talked of how wonderful it was after they had the surgery, they could eat anything they wanted. And then insidiously, the symptoms came back, and they were a candidate for more surgery. The one thing diet cannot do is heal scarring. Sometimes, it does take surgery to remove strictures. If you are having surgery, I recommend preparing 2-4 weeks of food for yourself, because trust me, you ain't gonna feel like cooking! If it does come to surgery, I will dig out my list of clear liquids, thick liquids, soft foods, etc. for you, and you can adapt what worked for me to foods which suit your particular system. <g> I put my trusty Maverick grinder to plenty of use in the weeks before my surgery... and we are now coming up on that being a full year ago. I attribute my own success with cancer surgery to SCD and to the supplement research which I did. You're in our thoughts! — 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 March 19, 2009 Report Share Posted March 19, 2009 Jodi, >> Do you know the success rate of people that need surgery that also do the SCD long term? What about recurrence of the disease? << No, I don't -- because people who are successful on SCD tend to leave the lists and get on about their lives -- only a few of us stay to teach. (And I'm eternally grateful to the wonderful people who do, because there is no way I could answer all the questions and still have a life!) If you'd like, I can ask , , and Lucy if they know. What I do know is that Turet, founder of the Long Island List, did not need surgery for her gut. Charlene, who was a moderator on Long Island, did have surgery, but I don't know the details, because that was around the time of Katrina, and I wasn't online very much. Lucy, of Lucy's Kitchen Shop, did not need surgery for her gut. Krivel, who did the first BTVC website, did not need surgery for her gut, although she is dealing with a number of other co-ailments. My grandmother died of complications of diverticulitis. My mother was just in hospital because of diverticulitis. I just had a colonoscopy, and there was no sign of diverticulitis. Kim Hesche's husband is doing great on SCD >> I had my small bowel series today and my whole right side is involved with *seen* strictures in the following areas; Transverse, proximal hepatic flexure, right colon, ileocecal valve, terminal ileum. << My gut aches, just thinking about all that. >> I also have a mass in the colon it *might* be dysplasia in the ascending colon. It might be stool built up which is questionable since significant stool build up (to see almost two inches on screen) would most likely cause an obstruction. The doc said he did see what looked like a polyp right under this mass. Anyway, we will know more after the colonoscopy. I am used to bad news and I just don't like getting ahead of myself. << Do you know where your towel is? (From Hitchhiker's Guide to the Galaxy.) Also translated as, " Don't Panic! " Keep in mind that a polyp does not necessarily mean cancer. And think about what shape things would be in if you hadn't had this last year on the best diet in the world for gut issues. >> The doc looked at me in disbelief and kept saying " I cannot believe you don't have more symptoms " anyway I will talk more about this in a following post.. << Bet he wouldn't believe that diet had anything to do with it! >> For now.. They want to see what is going on inside and also if I have no disease on left side (which means I am back to having Classic Crohn's) than I may be a very good candidate for surgery. ly, if there is any Cancer I just want it out. << Stricture surgery? And yes, if there's cancer, you want it out. However, you will also want to look at nutritional support for cancer, should it be that, and also LDN. >> I am staying on this diet- there is no question. Just wondering what success people have with not having recurrence after surgery and being on the diet? << I remember that Elaine felt that SCD was the best possible diet before, during, and after surgery to prevent disease recurrence. I can remember that in my early days on Long Island, when Elaine was participating, there were people who talked of how wonderful it was after they had the surgery, they could eat anything they wanted. And then insidiously, the symptoms came back, and they were a candidate for more surgery. The one thing diet cannot do is heal scarring. Sometimes, it does take surgery to remove strictures. If you are having surgery, I recommend preparing 2-4 weeks of food for yourself, because trust me, you ain't gonna feel like cooking! If it does come to surgery, I will dig out my list of clear liquids, thick liquids, soft foods, etc. for you, and you can adapt what worked for me to foods which suit your particular system. <g> I put my trusty Maverick grinder to plenty of use in the weeks before my surgery... and we are now coming up on that being a full year ago. I attribute my own success with cancer surgery to SCD and to the supplement research which I did. You're in our thoughts! — 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 March 20, 2009 Report Share Posted March 20, 2009 Hello: Two months prior to finding out about the diet, I ended up having emergency surgery- due to bowel obstruction. At the time, I was still undiagnosed..... and to make a long story short, the last 15 inches of my ileum was removed along with the ileocecal valve and one inch of my large intestine where it all connects due to damage done from the disease. It was at the point that I was diagnosed with crohn's. That was 13 years ago. Not that I am thrilled about what happened....but having been very ill for the year prior to the surgery, I was thankful to no longer be in pain....my hair started to grow back, gained weight etc. After learning of the diagnosis, I started to do research and at the time the medical info available stated that there was technically an 85% chance that I would end up having the crohn's come back at the site of the surgery and that I would end up with further removal of my small or large intestine. Anyway I was put on asacol (6 pills a day)..and about three months after the surgery found out about and started the diet. The firt year I was symptom free...the second year...I had some pain and other symptoms, however, stuck to strict adherence to the diet and by the end of the second year started to wean myself off the asacol. I would say the diet cured me. Due to the sections of my intestinal track, one would think that I would have problems with D or at the very least low B-12 etc... however that is not the case. Also my sed rate - which at the time prior to the surgery got as high as 120 always comes back normal...scopes are clean etc. There was a period of a couple of years where my symptoms came back (specifically pain and D), however, that was due to stress from personal loss in my life and at the same time not strictly following the diet. Once I got back on track, I was well again....although it took some time. I was blessed that it never got so bad that I had to go back on meds or that I needed surgery. Personally- my experience has taught me that I need to stay on the diet- strict adherence to stay symptom free...cheating does not work for me...but no complaints here. The diet is not a " diet " for me... it is a way of life ...there are so many great recipes...there is nothing that I miss having...and I have my life back. I will say that I did need help in the beginning with the cooking..one because I did not even know how to boil an egg (and I am not exagerating) and two having been ill - it took me a while to get my strength up to spend the time it took to cook. The crockpot became my best friend and it helped to make big batches of food and freeze to have available to heat up on days where I was just too tired etc. Anyway- I hope you find my post helpful. crohn's (no meds) > > Marilyn or any of the old timers; > > Do you know the success rate of people that need surgery that also do the SCD long term? What about recurrence of the disease? > > I had my small bowel series today and my whole right side is involved with *seen* strictures in the following areas; > Transverse, proximal hepatic flexure, right colon, ileocecal valve, terminal ileum. > > > I am staying on this diet- there is no question. Just wondering what success people have with not having recurrence after surgery and being on the diet? > > Any info would be greatly appreciated. > > Jodi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Hello: Two months prior to finding out about the diet, I ended up having emergency surgery- due to bowel obstruction. At the time, I was still undiagnosed..... and to make a long story short, the last 15 inches of my ileum was removed along with the ileocecal valve and one inch of my large intestine where it all connects due to damage done from the disease. It was at the point that I was diagnosed with crohn's. That was 13 years ago. Not that I am thrilled about what happened....but having been very ill for the year prior to the surgery, I was thankful to no longer be in pain....my hair started to grow back, gained weight etc. After learning of the diagnosis, I started to do research and at the time the medical info available stated that there was technically an 85% chance that I would end up having the crohn's come back at the site of the surgery and that I would end up with further removal of my small or large intestine. Anyway I was put on asacol (6 pills a day)..and about three months after the surgery found out about and started the diet. The firt year I was symptom free...the second year...I had some pain and other symptoms, however, stuck to strict adherence to the diet and by the end of the second year started to wean myself off the asacol. I would say the diet cured me. Due to the sections of my intestinal track, one would think that I would have problems with D or at the very least low B-12 etc... however that is not the case. Also my sed rate - which at the time prior to the surgery got as high as 120 always comes back normal...scopes are clean etc. There was a period of a couple of years where my symptoms came back (specifically pain and D), however, that was due to stress from personal loss in my life and at the same time not strictly following the diet. Once I got back on track, I was well again....although it took some time. I was blessed that it never got so bad that I had to go back on meds or that I needed surgery. Personally- my experience has taught me that I need to stay on the diet- strict adherence to stay symptom free...cheating does not work for me...but no complaints here. The diet is not a " diet " for me... it is a way of life ...there are so many great recipes...there is nothing that I miss having...and I have my life back. I will say that I did need help in the beginning with the cooking..one because I did not even know how to boil an egg (and I am not exagerating) and two having been ill - it took me a while to get my strength up to spend the time it took to cook. The crockpot became my best friend and it helped to make big batches of food and freeze to have available to heat up on days where I was just too tired etc. Anyway- I hope you find my post helpful. crohn's (no meds) > > Marilyn or any of the old timers; > > Do you know the success rate of people that need surgery that also do the SCD long term? What about recurrence of the disease? > > I had my small bowel series today and my whole right side is involved with *seen* strictures in the following areas; > Transverse, proximal hepatic flexure, right colon, ileocecal valve, terminal ileum. > > > I am staying on this diet- there is no question. Just wondering what success people have with not having recurrence after surgery and being on the diet? > > Any info would be greatly appreciated. > > Jodi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Jodi, I've had about a foot of my intestines removed before I found scd. Precancerous polyp and in the spot it was in they had to remove the valve also. I did great for years, even was able to eat non scd stuff sometimes. But for the last year and a half I've experienced 6 losses/truamatic events that have sent my body downhill with all the stress. But scd worked fine after surgery. Katy ____________________________________________________________ Click now and tackle the dirtiest jobs with the power of a steam cleaner! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Thank you and Katy for sharing your stories with me. Part of me feels that I just need a new page to start all over.. I just feel I have so many challenges. Reading you experiences help me. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Hi Marilyn, > >> Do you know the success rate of people that > need surgery that also do the SCD long term? What > about recurrence of the disease? << > > No, I don't -- because people who are successful > on SCD tend to leave the lists and get on about > their lives -- only a few of us stay to teach. > (And I'm eternally grateful to the wonderful > people who do, because there is no way I could > answer all the questions and still have a life!) > If you'd like, I can ask , , and Lucy if they know. I think it's ok. I am understanding that this diet will keep the demons at bay.. I will know more after the scope what is scarring and what is inflammation. The doc said my intestines have significantly shrunk due to so much scarring > What I do know is that > * Turet, founder of the Long Island > List, did not need surgery for her gut. > * Charlene, who was a moderator on Long > Island, did have surgery, but I don't know the > details, because that was around the time of > Katrina, and I wasn't online very much. > * Lucy, of Lucy's Kitchen Shop, did not need surgery for her gut. > * Krivel, who did the first BTVC > website, did not need surgery for her gut, > although she is dealing with a number of other co-ailments. > * My grandmother died of complications of > diverticulitis. My mother was just in hospital > because of diverticulitis. I just had a > colonoscopy, and there was no sign of diverticulitis. > * Kim Hesche's husband is doing great on SCD Thank you for writing this- this made me cry at the possibility of the life I -can- have.. I wish I found this diet sooner. 18 years of sheer suffering. > >> I had my small bowel series today and my > whole right side is involved with *seen* strictures in the following areas; > Transverse, proximal hepatic flexure, right > colon, ileocecal valve, terminal ileum. << > > My gut aches, just thinking about all that. Mine too. Makes me think of 2 GI's that told me that everything I experience is psycho-sematic and that I should be on Prozac. No question that there is an element of stress in -my- illness.. But come on'.. > >> I also have a mass in the colon it *might* be > dysplasia in the ascending colon. It might be > stool built up which is questionable since > significant stool build up (to see almost two > inches on screen) would most likely cause an > obstruction. The doc said he did see what looked > like a polyp right under this mass. Anyway, we > will know more after the colonoscopy. I am used > to bad news and I just don't like getting ahead of myself. << > > Do you know where your towel is? (From > Hitchhiker's Guide to the Galaxy.) Also > translated as, " Don't Panic! " Keep in mind that a > polyp does not necessarily mean cancer. Heh.. I love it when you quote HHGTTG!! It's not the polyp- it's the mass and under it is a polyp- that is why this mass looks ultra suspicious- GI is concerned with Colon Dysplasia. I hope it's nothing. Maybe just stool build up. Not fun when the Doc looked at me after breaking the news about all the strictures and scarring.. " Jodi, you are not going to like what I have to say now.. " deep pause.. he looked at me.. and on he went mentioning the C word. > And think about what shape things would be in if > you hadn't had this last year on the best diet in the world for gut issues. My honest truth Marilyn.. I do not think I would be alive. I was at my wits end living in so much pain. I do not know how much longer I could of endured with no hope. This diet has given me hope which is the biggest gift for me. Not to get so dramatic.. LOL. I wish I would of found it sooner. > >> The doc looked at me in disbelief and kept > saying " I cannot believe you don't have more > symptoms " anyway I will talk more about this in a following post.. << > > Bet he wouldn't believe that diet had anything to do with it! No. He wouldn't. But he told me " too stick with it just don't be fanatical " LOL- if he only knew.. The schlepping to the Green Market, the meat grinding.. No illegals in the house.. Fresh juice etc etc.. > >> For now.. They want to see what is going on > inside and also if I have no disease on left side > (which means I am back to having Classic Crohn's) > than I may be a very good candidate for surgery. > ly, if there is any Cancer I just want it out. << > > Stricture surgery? And yes, if there's cancer, > you want it out. However, you will also want to > look at nutritional support for cancer, should it be that, and also What is nutritional support for Cancer? I was reading raw food is the best for it.. I wish I would juice and go raw. What do you mean by LDN? I am on it now. Do you think like it can prevent things or you mean go off of it? > >> I am staying on this diet- there is no > question. Just wondering what success people have > with not having recurrence after surgery and being on the diet? << > > I remember that Elaine felt that SCD was the best > possible diet before, during, and after surgery > to prevent disease recurrence. I can remember > that in my early days on Long Island, when Elaine > was participating, there were people who talked > of how wonderful it was after they had the > surgery, they could eat anything they wanted. And > then insidiously, the symptoms came back, and > they were a candidate for more surgery. SCD is a lifestyle for me. Just wish travel could be easier and that I wouldn't have to be so worried leaving my kitchen! I just don't want it to come back- I have been avoiding surgery for years because in and out of hospitals getting surgery just for it to come back is not my idea of a life.. > The one thing diet cannot do is heal scarring. > Sometimes, it does take surgery to remove > strictures. If you are having surgery, I > recommend preparing 2-4 weeks of food for > yourself, because trust me, you ain't gonna feel > like cooking! If it does come to surgery, I will > dig out my list of clear liquids, thick liquids, > soft foods, etc. for you, and you can adapt what > worked for me to foods which suit your particular > system. <g> I put my trusty Maverick grinder to > plenty of use in the weeks before my surgery... > and we are now coming up on that being a full year ago. I love my Maverick. Everything you have told me to buy is just awesome. Omega, Maverick and Excalibur. I think you should get kick backs from the companies touting these products!! > I attribute my own success with cancer surgery to > SCD and to the supplement research which I did. > > You're in our thoughts! Thanks Marilyn.. Jodi Quote Link to comment Share on other sites More sharing options...
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