At the end of my last update (Ups and Downs), I mentioned that I might be trying an experimental treatment, and that I’d explain later. The explanation is still to come, but I will reveal that I was referring to a DIY fecal transplant. I’ll definitely be writing a post at some point soon about my experience with it, but this post will be dedicated to explaining my current state-of-health and plans, so in the meantime I recommend this article for an overview.
The fecal transplant unfortunately made things worse for me, and I wasn’t doing well before it anyways, so I’ve decided to turn back to drugs. Yesterday, I started 6-MP (mercaptopurine), which is an immunosuppressive drug that I was on exactly three years ago – September 2009 until October 2010. When I started it then, it worked really well for my colitis symptoms. I did flare after being on it for three months, but I got out of that flare with a round of prednisone and four days in the hospital, and a colonoscopy showed no inflammation a couple months after the flare. Also, because of its immunosuppresiveness, I came down with a case of mono that kept me in the hospital for two weeks and at home for another two weeks. I had stopped 6-MP when I got the mono and haven’t been on it since, until yesterday.
I do feel a bit like I’ve sold my soul to the devil, but I’m at a point where I’m willing to put the rest of my body at risk to stabilize my colon. My gastroenterologist readily agreed that 6MP was the way to go. I’m glad that he didn’t think it right to up my prednisone, as I’ve been on it for so long, and it didn’t help me during this flare. I also would like to get a blood transfusion ASAP; I feel so weak and tired and think I’m starting to look pale again – sure signs of anemia. I have an appointment with my GI tomorrow, where I’ll get bloodwork done which will undoubtedly show low iron/hemoglobin/hematocrit levels. Hopefully the transfusion can be the day after.
The fall semester starts tomorrow. My parents moved my stuff into my apartment yesterday while I rested at home. I was planning on moving myself in tomorrow after my doctor’s appointment and classes, but because of my symptoms the past few days, I’ve decided to commute to school this week. 6MP typically takes at least a month to work, but when I went on it three years ago, it worked for me within a week, so I am begging the universe that I’ll have a similar quick response now, so I can feel good and live back in Boston.
Lately, my symptoms have been mild or nearly nonexistent during the day, but I wake up maybe five times during the night to use the bathroom, and then maybe another four times between waking up and noon. I’ve been holding a hot water bottle on my stomach while sitting on the toilet, which stops spastic behavior in my colon and relieves my pain. I also use it in the morning before my symptoms calm down. And on top of all of this, I have a hemorrhoid. Joy, joy.
If the 6MP doesn’t kick in by next week (which I should not expect it to), at the very least maybe the hemorrhoid will have subsided by then, and hopefully I’ll be able to have a blood transfusion this week, which will give me more energy. If I was going to feel like this the whole semester, I wouldn’t be able to handle school, but I know that the transfusion will help, and then at some point the 6MP will kick in. So I just have to get through the first few weeks and then will hopefully have a trouble-free semester after that.
On the Chinese medicine front, my herbalist recommended switching to the probiotic L. Salivarius, which we ordered today, and he adjusted the herbal mix now that I’m on 6MP.
Hopefully, the next update will say that I have seen improvement. Until then, let’s hope I can juggle school and symptoms…wish me luck!