Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Hi all. I was a really regular reader and poster for a year or so, until a few months ago. I have realised that as I have got better and better SCD and UC have been taking up so much less head space and I am finding myself tuning in to this List much less - it used to be a lifeline for me. I am now doing extremely well with my UC having been on SCD for about 2 and a half years. I am free of symptoms. I do still take Colazide (6 capsules) so I guess I cannot consider myself a complete success until I am off this but I have decided to stay on until I have a full 2 years of remission behind me, as per my Doctor's advice. I no longer take any Prednisolone or use the Pentasa enemas that I used to use. I do take probiotics (one of which is broad spectrum and does contain some bifidus contrary to SCD protocol). I also take S Boulliardi (spelling probably incorrect). My history has been up and down - I initially responded really well to SCD and after about 9 months cut back dramatically on the meds I was then taking (Salofalk) aand also began to reintroduce a few illegals - mainly rice. After getting away with this for several months I then began a low grade flare which returning to full SCD and full meds couldn't reverse. Eventually it turned into a major flare and required me to take prednisolone for the first time. It then took a full year to work my way off the Prednisolone. If i could offer any advice to those just starting down this road I would say: - if you get a strong enough reaction in the first month or so to satisfy you that the diet will help you, then the trick is just to persist - persistence will hopefully pay off. - don't expect your success to be linear and steady. At one point at the height of my major flare I was actually worse off than I have ever been even before the diet, but I persisted, and now I am infinitely better than I have been since I first came down with the UC. - don't get complacent and either begin cheating or cut down your meds too fast, as I did. If like me you respond well to the diet you will get away with it for a while but it will catch up with you. - do experiment with different legal foods and try to analyse which ones suit you and which ones don't - for me this was important and it took me a long time to acquire this knowledge. Now if I am ever in any doubt about how my gut is doing I know exactly which are my best vegetables and fruits - when I'm feeling confident I consume most of them but I don't go overboard with raw fruit (other than bananas). The other thing I do if in any doubt is be sure to get plenty of fat because for unknown reasons this seems to really settle my gut. One of the best ways to acquire this knowledge is to do the intro diet and then gradually introduce foods one by one with a few days break in between. It's not easy but this helped me pinpoint my best foods. Other than that it just takes a long time to finally draw the connections and figure it all out. - if you find yourself on Prednisolone and need to get off, the approach I used was to get completely free of symptoms on the Pred by taking a high dose for a while, then taper extremely slowly (towards the end by only 1 mg per month) and if any symptoms recur increase my dose straight away. This took forever but was completely successful. I hope this gives some of you who may still be unsure whether the diet will work for you some extra confidence. I know that for me along the away it helped so much to hear the success stories of others - a few words from Lucy (Lucy's Kitchen) during the height of my flare helped me persist, persist during that time. I could only bring myself to begin the diet after reading Raman Prasad's " Colitis and Me " -reading his story told with such intelligence and credibility was enough to get me motivated to start, so I am thankful to him and to Lucy and to all the others who have shared their success and advised me along the way. Kylie UC 5 years SCD 2.5 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Hey Kylie! Thanks so much for the words of wisdom and hope. I'm only 3 months into this journey and feel frustrated at times. Hearing of your success makes it easier to keep my resolve. Congratulations!! UC 1/08 SCD 12/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Hey Kylie, Thanks for sharing your story. It makes me really happy to know that I can get to that point too!! Jodi SCD 6 months Crohn's/Colitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 thank you for sharing!!! really helps us newbies! eileen scd 2 1/2 months > > Hi all. I was a really regular reader and poster for a year or so, > until a few months ago. I have realised that as I have got better > and better SCD and UC have been taking up so much less head space > and I am finding myself tuning in to this List much less - it used > to be a lifeline for me. > > I am now doing extremely well with my UC having been on SCD for > about 2 and a half years. I am free of symptoms. I do still take > Colazide (6 capsules) so I guess I cannot consider myself a complete > success until I am off this but I have decided to stay on until I > have a full 2 years of remission behind me, as per my Doctor's > advice. I no longer take any Prednisolone or use the Pentasa enemas > that I used to use. I do take probiotics (one of which is broad > spectrum and does contain some bifidus contrary to SCD protocol). I > also take S Boulliardi (spelling probably incorrect). > > My history has been up and down - I initially responded really well > to SCD and after about 9 months cut back dramatically on the meds I > was then taking (Salofalk) aand also began to reintroduce a few > illegals - mainly rice. After getting away with this for several > months I then began a low grade flare which returning to full SCD > and full meds couldn't reverse. Eventually it turned into a major > flare and required me to take prednisolone for the first time. It > then took a full year to work my way off the Prednisolone. > > If i could offer any advice to those just starting down this road I > would say: > > - if you get a strong enough reaction in the first month or so to > satisfy you that the diet will help you, then the trick is just to > persist - persistence will hopefully pay off. > > - don't expect your success to be linear and steady. At one point at > the height of my major flare I was actually worse off than I have > ever been even before the diet, but I persisted, and now I am > infinitely better than I have been since I first came down with the > UC. > > - don't get complacent and either begin cheating or cut down your > meds too fast, as I did. If like me you respond well to the diet you > will get away with it for a while but it will catch up with you. > > - do experiment with different legal foods and try to analyse which > ones suit you and which ones don't - for me this was important and > it took me a long time to acquire this knowledge. Now if I am ever > in any doubt about how my gut is doing I know exactly which are my > best vegetables and fruits - when I'm feeling confident I consume > most of them but I don't go overboard with raw fruit (other than > bananas). The other thing I do if in any doubt is be sure to get > plenty of fat because for unknown reasons this seems to really > settle my gut. One of the best ways to acquire this knowledge is to > do the intro diet and then gradually introduce foods one by one with > a few days break in between. It's not easy but this helped me > pinpoint my best foods. Other than that it just takes a long time to > finally draw the connections and figure it all out. > > - if you find yourself on Prednisolone and need to get off, the > approach I used was to get completely free of symptoms on the Pred > by taking a high dose for a while, then taper extremely slowly > (towards the end by only 1 mg per month) and if any symptoms recur > increase my dose straight away. This took forever but was completely > successful. > > I hope this gives some of you who may still be unsure whether the > diet will work for you some extra confidence. I know that for me > along the away it helped so much to hear the success stories of > others - a few words from Lucy (Lucy's Kitchen) during the height of > my flare helped me persist, persist during that time. I could only > bring myself to begin the diet after reading Raman Prasad's " Colitis > and Me " -reading his story told with such intelligence and > credibility was enough to get me motivated to start, so I am > thankful to him and to Lucy and to all the others who have shared > their success and advised me along the way. > > Kylie > UC 5 years > SCD 2.5 years > Quote Link to comment Share on other sites More sharing options...
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