My name is Marc and I have had the fun of UC and IBD for over 25 years. You will appreciate this story. My previous GI told me after a colonoscopy that my bleeding (Needed 2 full units of blood) was from a hemorrhoid. I told him it would have to be the Mount St. Helens of hemorrhoids to spew that much blood. Needless to say he was not amused.
I just took my third round of Remicade. I made them give it to me without the steroid. I wanted to see if it was working or if it was the steroid that was keeping things at bay. I had it 5 days ago and have had 1 good day so far. I just have no idea what to expect. Any help would be appreciated
Some more about Marc:
I am from Atlanta and love to build and attempt to fly R/c plans, boats, etc. I have tried them all and have put every single one into the ground or under the water. Just not very strong in the hand/eye dept.
You name it I have had it or have it now. Urgency, 4 stops at bathrooms on a 25 mile trip home from the GI, bleeding, all the fun stuff.
Ulcerative Colitis for 25 Years
I am 54 and have had this for over half of my life. My family understands and then they do not. It is annoying to them that I am always looking for or going to a restroom, especially at movies or eating out. I try to keep things calm, but it is very hard to do. Lately I have been really bummed out about it. The holidays were just awful. All I want is a normal life which I simply can not imagine. I take a ton of drugs per day just to try to keep things in check.
I am frustrated and angry. I am not emotionally ready to get the bag or j pouch. I know that sounds stupid but emotionally that is just to much for me to have to contend with as it has been one of my constant fears.
If the Remicade does not work, then I guess I go to Humira. That is the last bullet in the gun. The hardest part for me now is knowing that there is no cure and I will have this for the rest of my life. I am tired of cramping on a daily basis or excusing myself out of business meetings. It seems like my whole life revolves around bathrooms all over the country.
I have tried to explain this to the Dr. and to the family. They understand, but as the only thing they have ever experienced is a mild stomach ache, they can not get how I can be doubled over with a sock in my mouth in the bathroom so they won’t hear me yelling from the pain.
I apologize for the whining nature of this note, but I am at my wits end. If this Remicade does not work, I am not going to try the Humira. I guess I will go back to the old pred and just manage symptoms
asacol Stopped working
6 mp kind of works
Pred works but has awful side effects
Hyscopamine (Cramping med) works some of the time
written by Marc
submitted in the colitis venting area