Hi,

I've just come across the SCD diet and was wondering if any jpouchers have tried it or know about it. I had my surgery back in 2000 for UC and for the past 10 years I have been in and out of the hospital with problems like pouchitis, animea, etc. It's been a very difficult transition from colon to jpouch and right now I want to find something that works. The antibiotics are poison, sorry to say they make me sicker than anything else. The probiotics are helpful but have a limited effect if any. But from what I've been reading about this SCD diet it really got my attention. It basically works by eliminating foods such as wheat, dairy, sugar, rice, and starches (potato, etc), these are the food for bad bacteria. The idea is you starve the bacteria, they die and the lining of your gut can now heal (naturally). I really suggest people look into this diet, its been around for 50 years and 75% of people who stick with it have had success. I'm trying it right now, beginning stages. The most difficult part is the beginning, takes about 2-3 weeks for the body to adjust. Please let me know if any of you have tried it and how it went. Thanks.

Do a search here on SCD and you'll find lots of posts. For the most part, if the SCD diet had worked people wouldn't be members here. Some people have found that it helped but ultimately most had their colons removed.

kathy

I tried the SCD diet and also ended up with colon removal and a J pouch. I don't know how well it would work after a J pouch is established as it is for UC and you no longer have UC once your colon is removed.

My GI doctor told me that she believes that it is the sugars in our diet that are causing the build up of bacteria. That said she had me see the nutritionist in her office whom has me on a diet that is similiar to the scd expect that I am allowed dairy and very small amount of carbs-very small. It is pretty limited but it looks like the scd is even more. I just started it and it is very hard. I want my pasta! and chocolate!

Hi Joel,
Just came across your post and find it interesting. I have had a j-pouch for three years and chronic pouchitis for all that time. I have decided that the SCD is worth a try. It makes sense to me even with a pouch as the pouch is, after all, part of the small intestine and so susceptible to the same principles of sensitivity to sugars and other carbohydrates. I've been on it for almost two weeks with mixed results. The first week there was an improvement and I actually gained a pound (a good thing for me as I've been having trouble maintaining weight with pouchitis). The second week my symptoms increased; frequent output and leaking and so I pared back to the beginning diet which is very bland and basic for people with diarrhea (basically chicken soup with pureed carrots, yogurt, etc.) Unfortunately this has caused me to lose an additional five pounds. I've decided to persevere for at least a month to see if my pouchitis improves. It is very challenging and I find myself in the kitchen a lot preparing foods that are required and not available commercially. At this point though, with meds. not working for me, I would try anything to lead a more normal life and get back to a healthy weight. I would be very interested to hear from you and others who may have tried the SCD with a j-pouch and learn of your experiences.

Rhema

Hello -- I was on the SCD diet prior to my surgeries; while it obviously didn't save my colon, it did make me feel better. Once my second surgery was complete, I went back to eating "everything" - with no limits -- and I had several extended bouts of pouchitis, with mixed positive responses to Cipro. I decided to do a modified version of SCD -- I only eat rice as my carb, limit the dairy (I try to eat yogurt and some cheese, but keep away from other milk products) and I try hard to limit my sugar intake (although I didn't give it up completely.) Prior to going on my version of SCD, I was up every 2hours at night and really felt poorly -- now, I sleep through the night most nights or get up just one, the butt burn has gone away, and I feel terrific. I previously wasn't able to eat ANY fruit of veggies, now I am able to eat a piece of fruit per day and add new veggies each week (still mostly cooked, but that's ok). Still have problems with things like carrots, tomatoes, corn peppers - but again, I can deal with that. I know my issue was with the foods I eliminated because if I go back and eat wheat or a ton of sugar, I get sick, am up all night, and it takes a few days for things to get back on track. Knowing what the intro diet is like on SCD, I think I had to add rice in to help keep things a little more solid. I eat candy or chocolate every day -- I just try to keep the amounts down. It's almost gotten to the point where I can eat some pasta, the bad side effects aren't terrible. When I do eat that stuff, though, it makes me really crave more of it, so I try to stay away. Anyways, I guess what I am trying to say is that I think there is some sense in playing around with the diet. I kept rice in my diet because that was the first polysaccharide food allowed back after remission on SCD, and it's worked for me. There is a ton you can do with rice too. I found that the things I was really craving -- sugar, wheat and dairy -- were the things making me feel bad. Hope this helps -- Tara

Thank you Tara; your story is very helpful and encouraging for me. Not quite at the two week mark and overall I'm definitely seeing improvement.
Rhema

Good luck Rhema, I know how tough altering a diet can be. I wanted to add one other thing that really helped, and I found it on these boards. When I really went gluten free, I did a month "session" of Candigone (capsules and the drops). Others had posted good things about Candigone on this site -- and I felt that on top of the pouchitis, I definitely had some serious yeast issues because of the Cipro. (I was on and off it for over a year!). That really helped me deal with the sugar cravings initially. Sometimes, if I feel like I am slipping back into a pattern of too much sugar, I do a two week course of Candigone to set things straight again.
Good luck, and let me know if you have any questions -- please keep me posted on how you are doing!
Tara

I was on the scd for only a week - very hard and was in the kitchen cooking all the time, almost a 24 hour job. Really hard and I was losing weight, felt worst than with pouchitis, lightheaded, weak, just terrible. I need carbs! I'm on a very bland diet right now, trying to settle things down with the pouchitis, also on a 14 day course of Flagyl (1pill 3x a day) and Cirpro (1pill 2x a day). I'm trying to limit my sugar intake, also no dairy or red meat. For now just fish, poultry, rice, potatos, pasta (no sauce), very little butter, very little oil, no cheese, chex cereal, rice krispies cereal, soy milk, soy yogurt, VSL3, green tea with antioxidants (little bit of honey), ensure smoothie (banana, avocado), Forvia multi-vitamin, and vitamin D. And I wish I could say all these things were working for me but right now I'm having limited results, depends on the day. Last week was hellish. Since I started the anti-biotics I've seen some improvement - only day 5 - and hope to see more as the days go by and hopefully my bland diet will help settle things. Once I feel better I will try and add more foods, but this is what has worked for me in the past. With regard to the SCD - try it and decide for yourself if it's worth it. For me it was not, but not everyone is the same. Good luck.

hi i was a srict scd person for two whole years when i had colitus..i followed it down to the umf degree..it never helped my colitus..thus i have jpouch..and alas i am not a successful jpoucher either..chronic pouchitis but i want to correct some misinfermation about scd given here..only about 20 to 25 per cent of folks have success with scd diet to control their colitus..infact colitus has less success than other intestinal issues that scd works for..over all it has about as much success as any other method known...that said if you have issues with your pouch like pouchitis the diet is more agreeable for an inflammed pouch but in and of itself it does not cure pouchitis..moreover i am inclined to believe after my experiences and having been a part of the scd sites for years that diet in and of itself will not cure most issues with pouchitis..i too was told with my pouchitis to stay away from sugars ,raw carbs and so on but found that when i am on my antibiotics for my pouchitis i am able to eat those and more and when i do have pouchitis without my antibiotics no foods eliminated really works..

it is i think far more complicated then just foods we eat and like when we had colitus we saw that diffwrent things worked for different people ..same here with the pouch issues..while having irritation,burning etc it makes sense to stick to the less irritating things but that will depend on who is eatting it..

also if you read the scd book and author she says if you do not see improvement within a months time it probably will not work for you so i think after not taking that advice when i used it for colitus (hope is eternal!)i think that is good advise..

rebecca