OK, this is post number two. My first goal is going to be consistency, then clarity, and hopefully someday a bit of fun and entertainment. I did not write yesterday, but some important things have happened. But first, as promised, a very quick attempt at a comprehensive overview of my history with ulcerative colitis, and my position with this disease today.
I was diagnosed with ulcerative colitis at about 25 years old. I was working construction in San Diego, California and my symptoms appeared suddenly, but were mainly mild. My diagnosis was mild proctitis which I believe is about as mild as one can possibly have UC. I was eventually put on a maintenance dose of APRISO (mesalamine) and was mostly symptom free for the next 5 years. I did sporadically experience "flares" which consisted mainly of some blood or mucus on the toilet paper. This never really impacted my life, and I do not remember feeling much concern. I had fairly regular colonoscopies, and may have shown some very mild progression, but nothing impactful.
Around the time I turned 30, I moved back to NY (where I am originally from) and within a few months I began to "flare", this time for real. Blood increased slightly at first, along with urgency. Next was frequency, and when I started having to go to the bathroom over 5 times a day with little warning or ability to "hold it" I quit my job. Even before I had gotten to that point I was seeing a doctor, and then another in NY. They tried the basic steps that every GI doc in the US will do. Mesalamine, then enemas, then steroids, then remicaid. Throughout these trials my symptoms continued to progress. Just before Christmas of 2011 I went to see my doctor and was immediately hospitalized. I was shitting blood uncontrollably over 30 times a day and all night. I was underweight, malnourished, and in fast decline. My hospital stay was 7 days long during which they treated me with IV steroids and after not responding sufficiently they requested to remove my colon. I decided not to let them because I saw a slight improvement. (I am trying not to be dramatic in my writing.)
I returned home still very sick, and have been in somewhat of a state of recovery ever since. Of course it has been 3 years now, so if I am recovering, its not a speedy one. I can say that nowadays I have to take a crap on average 4 times a day. I still have urgency, but I do have a little bit of a warning now, and don't have accidents very often. Blood is still present most of the time, though often it is very limited and sometimes just on the paper or not detectable at all (that always feels like a victory). My stools are mostly formed and look decent except a slight lack of digestion and probably the most concerning of all is that they are much thinner than I would like(slightly bigger than a sharpie marker). This thinness frightens me most because at the very best I believe it signifies inflammation; other possibilities are strictures and of course cancer.
Some other time I can elaborate more on my story, and all of the things I have tried in order to get myself to this point.
What I want to talk about a bit More is my progress towards doing a fecal transplant, using a friend as a donor, while staying at his house in San Diego.
Yesterday I saw a local GI doctor for the first time, as I thought it would be a good idea to develop a relationship with a doctor (you never know when you are going to need those guys). I explained to the doctor that I am planning to do this fecal transplant, and although he is skeptical of the transplant's ability to help me, he went along with it. He also had some of his own suggestions, which I will be following. On his advice I will be submitting to a colonoscopy this coming Monday (it is Thursday today). This will be a good opportunity to see how things look up there and to rule out things like colon cancer. It will also be nice to see if I have made some progress since my last colonoscopy when I was in the hospital 3 years ago. Also assuming that my transplant is a success, I may be able to visually confirm that by comparing before and after. I am actually a little afraid of what he will find in there since I have been sick fr so long, but this feels like the right thing to do, and I will face it.
He also made some suggestions about having my friend ( donor) tested for basic communicable diseases, and parasites. My friend has kindly enough agreed to have these tests run and will be going to the his doctor tomorrow.
So long story short, things are moving along, and I hope to begin the transplant procedure within the next week. Much more to come......Alex
No comments:
Post a Comment