I've had my j-pouch for a few years and it's just a nonstop battle, with all the typical symptoms varying week to week. Had severe UC--Remzi did the surgeries. Shen did the maintenance. With the discussion of complications and stuff only doctors can do aside, I know it's to the point where the only chance I have to somehow turn my life around is to take this into my own hands via an absolutely perfect and consistent diet.
I'll start by saying I know inside and out all the DOs and DONTs with foods and which ones cause which symptoms, etc. I've been playing the trial and error game for years. Yeah, there may be a good day (barely) now and then, but none of the "mainstream" j-pouch diet suggestions are truly making a difference.
**** I need a regiment that is "outside-the-box" and is capable of truly turning my life around ******
Now, I know there's been LOTS of discussion about diets, but I was wondering if any of you have filtered through it and are strongly familiar with the chemistry of very healthy, perhaps unusual, food and supplement combination, and would be able to point me in the right direction for building a daily routine? I'm not looking for lists of foods that thicken or loosen, burn or cause odor, etc. I'm looking for potentially powerful diet overhaul ideas that have had proven results for people not just with some sort of severe IBD, but also people like us without a colon. I think that part is key because I've read books, seen all over the web, and listened to podcasts of experts with amazing diets that have changed their lives, but these were always people who had severe UC or Crohns, but had not gotten to the point of colectomy/j-pouch. And therefore, we cannot apply those "miracle" diets because our lack of colon introduces a huge new array of restrictions (i.e. many times they focus on large quantities of organic veggies, and I for one can only tolerate some veggies in very small amounts w/o risking obstruction).
Just to add another wrinkle, I personally desperately need to be able to gain weight, so hopefully there is a solution that can still help given that variable.
I hope I'm making some sense and would be very thankful if anyone shared their knowledge or had some helpful resources to point me to. I'm thinking that some sort of advanced daily smoothie will likely be involved. If nothing else, are there any suggestions for a super nutritious, yet j-pouch friendly smoothie? I think "super nutritious" is kind of the key theme I'm hoping for with this thread. What is a diet that not only helps prevent some of the daily struggles we have, but also has the potential for a total health and longevity improvement?
For the record, I have been taking VSL#3DS for a couple years and it has not helped at all, so I think I need some ideas bigger than just adding a specific probiotic or supplement. When I read about aggressive SCD diets, I just see a lot about how it can also hurt you badly at first and it is not a lot of intake so weight gain would be worse. but, in general, I'm looking for something aggressive like that. I'm willing to go to my local natural foods store and buy all kinds of things I've never heard of if that's what it takes!
Thanks for letting me pick your brains.
I'll start by saying I know inside and out all the DOs and DONTs with foods and which ones cause which symptoms, etc. I've been playing the trial and error game for years. Yeah, there may be a good day (barely) now and then, but none of the "mainstream" j-pouch diet suggestions are truly making a difference.
**** I need a regiment that is "outside-the-box" and is capable of truly turning my life around ******
Now, I know there's been LOTS of discussion about diets, but I was wondering if any of you have filtered through it and are strongly familiar with the chemistry of very healthy, perhaps unusual, food and supplement combination, and would be able to point me in the right direction for building a daily routine? I'm not looking for lists of foods that thicken or loosen, burn or cause odor, etc. I'm looking for potentially powerful diet overhaul ideas that have had proven results for people not just with some sort of severe IBD, but also people like us without a colon. I think that part is key because I've read books, seen all over the web, and listened to podcasts of experts with amazing diets that have changed their lives, but these were always people who had severe UC or Crohns, but had not gotten to the point of colectomy/j-pouch. And therefore, we cannot apply those "miracle" diets because our lack of colon introduces a huge new array of restrictions (i.e. many times they focus on large quantities of organic veggies, and I for one can only tolerate some veggies in very small amounts w/o risking obstruction).
Just to add another wrinkle, I personally desperately need to be able to gain weight, so hopefully there is a solution that can still help given that variable.
I hope I'm making some sense and would be very thankful if anyone shared their knowledge or had some helpful resources to point me to. I'm thinking that some sort of advanced daily smoothie will likely be involved. If nothing else, are there any suggestions for a super nutritious, yet j-pouch friendly smoothie? I think "super nutritious" is kind of the key theme I'm hoping for with this thread. What is a diet that not only helps prevent some of the daily struggles we have, but also has the potential for a total health and longevity improvement?
For the record, I have been taking VSL#3DS for a couple years and it has not helped at all, so I think I need some ideas bigger than just adding a specific probiotic or supplement. When I read about aggressive SCD diets, I just see a lot about how it can also hurt you badly at first and it is not a lot of intake so weight gain would be worse. but, in general, I'm looking for something aggressive like that. I'm willing to go to my local natural foods store and buy all kinds of things I've never heard of if that's what it takes!
Thanks for letting me pick your brains.