Remi Setbacks

Hello! I had been diagnosed at age 14, was on prednisone almost the entire time and tried various drugs like imuran and asacol but they only worked for a short period of time. They decided to put me on Remicade. I had 4 treatments total. The first 2 worked just fine but the 3rd and 4th the diahhrea and bleading kept coming back quicker and quicker. Remicade was my last option and finally it just didnt work anymore. I was so unbelievably scared!! I was 22 and engaged and didnt want surgery at all!! I had my first surgery in Feb 2008. I had an ileostomy bag for a year. At age 22, having an ileostomy bag i thought was going to be the worst thing you can imagine. But it really wasnt. Im a small girl and wear form fitting clothes, you could never see the bag. No one ever knew i had one unless i told them. I did get blood clots after my surgery which was really bad and pushed my surgeries back longer than intended but they can be avoided and mine were mostly due to the fact that i waited so long to decide to get the surgery and got really sick. I weighed 97 pds for my first surgery so i had to have the surgeries in increments of 3 instead of the 2. Thats another reason not to wait. Anyway, i had my reversal. I was even more afraid to do that. And it was the best thing i have ever done in my entire life! I am 24 years old. I am getting married in 2 months. My fiance and i want to have a child in a year or so. Everythings great!! I go to the bathroom about 8 times a day but its very small amounts and i can hold it very easily. I havent had a problem with road trips like before. I can eat whatever i want! Anything! I used to take 26 pills a day and for the last year i have only taken 1 immodium a day and a mulit-vitamin. Its so crazy to have UC for 10 years at such a young age i went through a lot and never thought i would be normal again but i am normal now and am living such a great life!! I wish so many times i would have gotten the surgery years ago and had this "new" life a long time ago! I hope that this helps you because you sound like you were in the same position as me and surgery is really the last option. But dont be discouraged! If you have any other questions let me know and goodluck!

Amber

Amber,

Thanks for the reply. I hate you have had to go through this at such a young age. I was in my second year of college when I was diagnosed. I felt I was too young then.

I am glad you are doing well. I know I will have to have surgery soon. It helps to here encouragement. I guess I just wish it would just go away. I am scared and alone when it comes to this. Not much support from husband and his family.

thanks again.

tina

MACGIRL, as mentioned, you might want to try a Rowasa enema to get you over the hump between infusions. If Remi does fail and you do decide surgery, there are so many that have had success with it, and Comber being one of them!