Hi everyone my husband Layne and I actually met on this forum 20 years ago! We have been doing pretty well, except Layne has had severe pouchitis for nearly a year now. We’ve just started the specific carbohydrate diet, I am doing it to support him, and it’s really really hard! We are only a couple days and but so far both of us feel horrible tired , grumpy, and he actually seems to be going a bit more. This is more than just gluten free, it’s on starch or grain of any kind. Would love to hear your experiences!
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Most people with severe pouchitis won’t get better with diet alone. Has he tried standard antibiotic treatment?
Hi Scott- yes he's done several courses now and nothing has helped. We're going to give it a go along with vivomixx and see what happens!
It's normal to feel horrible in the first few weeks of the SCD diet. If the symptoms are too much, do a slower wean off of the illegals. After you get through the die-off phase you'll start to feel so much better. I have been doing SCD for about 9 years and I think it's kept me from biologics and long-term antibiotics. However, with that said, I don't know if it will help the pouchitis while you're already in a flare.
Also, it really helps to understand the science behind the diet and why the strictness of it all is so important.
It's not a miracle cure and it can take a while to see improvement, but overall I think it's been great for my pouch function. I did feel significantly better and have had long stretches with no pouch symptoms whatsoever. (I have not been entirely problem free though!)