I'm Phen. I've been on and off of this forum for many years now, and it's helped me tremendously during my toughest moments with Collagenous Colitis. I'm not the most avid poster, but I've relied to this site countless times while in distress — usually while on the toilet. LOL. Tex's book also helped me a ton, and I still keep it handy. I'm here today because I've reached a point in my life with MC/CC where I believe I'm in (or close to) remission — and I have some questions!
I was diagnosed in 2016 when I was around 23 years old. I've been exhibiting gastro issues since I was 15-16, with a lot of my issues coming from heavy gluten, dairy, and sugar intake, but I didn't get a colonoscopy until I was in college. I was struggling to eat and weighed less than 115 lbs. My flareups used to be weekly, but now they're very rare and only appear if I eat something out of my normal scope that is one of my trigger foods. I feel a lot like myself again. I'm able to eat high-quality chicken eggs, oats, potatoes, salads, and more after avoiding them for so many years.
But I wanted to post today to ask a few questions about going forward. In May 2023, I took a trip to Japan with my partner. I ate the gluten, dairy, and soy over there with little to no issue. I've heard about the agriculture differences in other countries, but I'm curious to know if anyone else had this experience firsthand when traveling abroad? I only had one urgent flareup out there that almost caused me to defecate myself — and it was red rice! I think it was the toughness of that rice (it was crunchy), because my biggest sensitivities are foods that are naturally harder to digest like gluten, dairy, and cane sugar, but I've also noticed raw nuts, bell peppers, and a few others that I still avoid.
My typical breakfast is fresh greens, kimchi, two poached eggs, potatoes/sweet potatoes, and gluten-free sourdough toast with avocado. Fermented foods seem to help me a TON as well, as long as they are free of cane sugar. My two biggest lifesavers have been psyllium husk to help bulk my otherwise loose stool, and marijuana for helping me calm my stress via CBD and stimulate my appetite.
Lately, I've thought about trying A2 casein cheese after avoiding American dairy for years, but I'm a little scared to do so. Anyone have insight on this? I feel like I'm on a good stretch, but I don't want to try a bite of A2 cheese and instantly revert myself back to where I was years ago...if that's even possible.
My recent bloodwork shows my inflammatory markers are in the clear, and I'm not having any notable pain or bloating — but I do still get diarrhea/loser stools, and I remember someone on here saying that my body might not be used to having normal bowel movements. I've had three colonoscopies as of 2024 with all of them saying the same thing: "Collagenous Colitis" and that's it. I strength train and go to the gym every week, and I also take creatine now with little to no side effects since I'm drinking lots of water for the psyllium anyway.
If you made it this far, thanks for reading! I'd love to know if anyone else had similar experiences as me. I'm still not sure how I ended up with MC/CC at such a young age, but I believe it could be because I had three surgeries on my hand as an infant. (I have syndactyly on my right hand, so I only have three fingers on it. I've heard that antibiotics can mess with the gut biome, especially as an infant.)
If you have any questions to make this more clear, let me know. Thanks again!
