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!
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!)