Posted 5/18/2008 9:19 PM (GMT -6)
Hi everybody. It's been a long time since I posted here. I just wanted to give a quick update to those of you with whom I engaged in discussions regarding my disease.
Anyway, I'm doing GREAT. I have been in remission ever since about the middle of last year when I returned to the US from Germany where I received the Adacolumn treatment for 3 months in an open label clinical trial. I was in the group which received 10 treatments over a couple months. It did not seem to work for me whatsoever, as my exit c-scope looked just like my entry c-scope.
When I returned home, I met with my GI who, knowing how hesitant I was to try remicade, agreed to put me on maximum doses of Lialda (4/day) and Canasa (2/day). Within say 2 months, without any other treatments at all, I was feeling well enough to return to work, where I remain to this day.
At my last c-scope, my GI found about 40 possible polyps which he removed and sent to the lab. Turns out they were all pseudopolyps (non-cancer, benign) and I looked totally healed! I have lots of scarring which is why I will probably always have "bathroom issues" but they are NOTHING like what I used to have to deal with (incontinence, urgency, bleeding, 20 trips a day, cramping, depression, etc.).
I don't know if the adacolumn helped in a delayed way. I'm not sure if any of those other modalities would have worked (I tried fecal infusion, lidocaine enemas, lecithin enemas, olive oil, omega-3 ... actually, I'd be surprised if there's anybody who tried more things and more radical things than I did).
My current diet is completely without restriction. I don't take any other meds than the 2 I've listed. I am a trial attorney and I have no problem working full time plus.
So. There it is. It turns out that the 5-ASA meds actually DO work for me, it's just that I need to take them in high doses.
I thank God for every bit of health He gives me, and every day above ground is a good day.
Don't give up; it took me several years to find what worked for me.
GOOD LUCK TO ALL OF YOU!