Three weeks later

Per usual I am late on updates.

To summarize, the practitioner who agreed to take on my case for fecal transplantation backed out (no pun intended) on the morning of the procedure. She had only done transplants on two other patients with UC (both of whom she was treating for C diff) and it triggered flares in both of them. For her it was a comfort issue, I also didn’t keep her in the loop with my other providers, so she wasn’t sure where I was with my care, etc. Lesson to be learned: communication is key, all around…

Yet no matter what, I had done all of the prep (64 ml of Gatorade + 55g of Miralax) and reaped none of the rewards! However, a good cleanse can make you feel quite right from time to time. For the first time in a little while, I had no abdominal pain. Nothing in your belly equals nothing to screw up your day. No complaints on that end.

I decided to use the bowel prep as an opportunity to start on the SCD diet. Something I had been meaning to try, but it’s just so damn strict you can’t really casually kick into it without some sort of sudden change. Unfortunately despite what I was eating, my symptoms were coming back rather strong. I was in the middle of tapering off cyclosporin to 1/3 of the full strength dose, and I don’t think I was ready.

I did the SCD intro diet as prescribed for the first three days. On day 3 I made homemade yoghurt which did not sit well with me after 12 hours. I also noticed I couldn’t do tea or anything sweetened with too much honey. I was chatting with Traci over at thepowerofpoo who has undergone HPI (human probiotic infusion, aka fecal transplantation) for IBS and she referred me to SCD lifestyle – a website/podcast/life manual made by Jordan and Steve, two fellows who’ve got the SCD diet down to perfection. Their version of the intro diet cuts out all dairy, which for me worked far better.

I also found a cool app for my iphone that’s a more realistic for me to use than a physical food/symptom journal. The app is called AllergyDetect, and though I’m not looking for any allergies, it shows you any correlation between food and symptoms over a range of time.

Despite all that, I was still having bad frequency/urgency and the like. Around day 5 or 6 things weren’t getting better, then BOOM came the fatigue. I went back to the hospital on day 7.

I will talk more about my latest internment in my next post, but I want to say that now that I’m out with my meds ramped back up, the SCD diet is definitely helping. If anyone is interested there are tons of resources in the world wide, just ask questions! Buy the book, read up on the science; the concept is sound. I will say it’s very difficult being on such a limited diet, a lot of which includes high fiber foods which you need to add in one at a time very SLOWLY… but I’ve been having my fair share of fruit smoothies and I feel like a kid again. Yeah it’s 7p, and I’ll be having some grape juice with my dinner.