This summer has been full of ups and downs, health-wise.
DOWN: While at school in May and June, I very slowly got more symptomatic, and once I was home in July, I continued to worsen; more blood, fatigue, bathroom frequency, diarrhea, etc.
UP: In my last update, I said that I saw improvement from adding in a nutritional green powder.
DOWN: Just a few days after starting that, I needed to stop my probiotics for two weeks because the functional doctor I saw near the end of July wanted me to send a stool sample to a lab for some testing. Normally, stool tests don’t require any change in medication/supplements, but this one was done in order to find out my constitution without the effect of probiotics. Just over a week after stopping the probiotics, I started to become more symptomatic.
MORE DOWN: A few days later, I needed to stop my supplements and new nutritional powder for four days because of another test he ordered, a urine+blood test to check my nutritional profile. So then I got even worse. I plowed through, though, knowing the reason for this reversal of progress and knowing it would be over soon. The day that I was done sending in my samples, I was relieved to be able to start everything up again. By this point, I was doing quite terribly, feeling in pain while using the bathroom and seeing more blood than stool. At least this proved that everything I’m doing is helping! And hopefully the results of those two tests will be helpful.
UP: After getting my blood taken at the office of the functional doc for the blood/urine test, I stopped by my herbalist since his office was not too far. He made another herb adjustment, and, since I hadn’t eaten that morning for the fasting bloodwork, he gave me some brown rice powder in hot water that tasted really delicious, despite how it sounds. When I got home, I restarted all of my supplements and probiotic, and the rest of the day was great! I didn’t use the bathroom until late at night, which was a big change from the past several days when I was going several times in the afternoon and evening.
DOWN: But the day after that, I started to do worse again. And the next few days were the same. I found it so strange that I would exhibit such an improvement and then go downhill, and I asked myself how this could have happened. Was there something different I was doing? Why, yes! The brown rice powder! I had been having more of it since that day at my herbalist’s. (There’s at least one other ingredient than rice powder; it says it is taro-flavored, but other than that, I’m not sure – the rest is in Chinese.)
UP: Sure enough, a few days after stopping the rice powder, I started to do better again. My herbalist thought my reaction might have been due to a mushroom that was in the powder, and while that may have contributed, I discovered that I am allergic to shan yao – a Chinese yam that is related to taro, the tuber that flavors the rice powder. I discovered this allergy because my herbalist recommended I try making a soup with this type of yam. While chopping it up, I had one bite of it raw and reacted like I do if I have a bite of a walnut; my throat started to close up just slightly, and I could feel my bottom lip start to puff up. Fortunately, this was as bad as it got – no epi-pen necessary – but unfortunately, no more yam for me.
Although it sounds like an “oh no!” situation, it was an interesting one. When I had the rice powder, I didn’t react like I did when eating the yam itself; the reaction just took place in my colon, maybe because there wasn’t enough taro to cause a bigger reaction? I knew that there is a link between allergies and UC (or any autoimmune disease) but now I could see it for myself. It was like a science experiment, unintended though. It also forces me to understand that allergies come from the most unlikely places; I would expect an allergy to nuts or soy, not a yam – a vegetable!
PLATEAU: Since stopping the rice powder and being back on my probiotics and nutritional powder, I’ve seen less blood, although still too much, and better formed stools (not to be confused with formed stools). The pain is gone, too. However, I would say I’ve now plateaued. As for my energy, it could be worse – I’m better than I was upon my return from Newfoundland – but I would most likely be much better if I hadn’t had these setbacks since then. The iron infusions I’ve had every week for five weeks have helped, but I still get tired pretty easily. It makes me nervous for my return to school, which happens in a week and a half from now. My weight is 92 pounds, where I’ve been for awhile, and so in addition to low energy, I’m physically a bit weak. I decided to take just three classes instead of the regular four this semester, which will hopefully be manageable. I’m looking forward to my classes, and to seeing friends who were abroad or across the country when I was back at school in May and June, but I hope I can make the most of all this.
NEXT STEPS: Everything stems from the amount of blood there is; less blood means less inflammation, which means more energy and more weight and more strength. I have such a stubborn colon, though!
One thing that would help a bit in the short term would be a blood transfusion. Those supply a burst of energy, but I hate to use that as a crutch, especially because I’m still bleeding and therefore will eventually need another one. It would be different if I was seeing consistent improvement and knew that the transfusion would be a one-time thing. My GI doctor is away right now, but I may ask him about a transfusion once he’s back.
I also have another treatment up my sleeve, an experimental one that is also kind of gross, but it’s a genius idea and has a high rate of success. Probably very few reading this know what I’m talking about, but I’m not going to spill just yet. I’ll be talking with my GI doc about it on Monday since he’s somewhat familiar with it, and then I’ll let you know more!