Hi all! I am a 24 year old female with Ulcerative Colitis and anemia. I was diagnosed with UC at age 13 and ever sense have been on and off different meds. This past year became extremely difficult for me, I was hospitalized with a horrible UC flare in October of 2007. (Side note, I have been on and off prednisone for years and as time goes on the side effects have gotten worse) I was given solumedrol, Asacol and was not allowed to take anything other than meds by mouth, I was given liquid nutrition through the IV. My doctor did a scope at that time and said that my entore colon was pretty bad and was pretty adiment about
me looking into getting the J-pouch surgery. Due to the prednisone my colitis was controlled.
December of 07 right after Christmas I ended up with a horrible stomach bug which threw my UC into a flare again and had to be hospitalized. The presnisone had stopped working on its own. While in the hospital they ended up doing the same regimine as before adding remicade to the mix, only I have horrible veins so they gave me a PICC line. After a week my colitis got better, my doctor discharged me but before leaving the hospital they took out the PICC line and my arm clotted. I was diagnosed with a DVT in my right arm. I had to stay another week. After following up with my doctor he still said i could look into the surgery but we needed to get the clot thing situated. I was tested for all clotting disorders and all came back negative, however they need to keep upping my coumadin level, so I dont understand what is going on...anyways.. the doctor who performed the blood clotting tests said I could go off coumadin in July, he saw no reason for me to continue taking it but when I went to have my inr checked again they had to increase me 10 mg a day again, I dont understand how i can just go off it if they are insisting I am on a high dose and it has never been steady. I am mentioning all this clotting stuff because this has been a major fear of mine for years now. I have known people to go in and have a simple surgery and die right after due to clots.
Here is my dilema now, I am completely off steroids for the first time sense October of last year, I just finished my 6th remicade treatment. I can say the only side effects I have noticed while on it so far has been joint pain and weakness that comes and goes. I am also starting to develop upper respitory congestion but it is extremely minor. I receive remicade every 4 weeks, right before receiving my last dose which was last week I started to have some symptoms of a UC flare again, only going once or twice a day but there is some blood and soft stools. I ate nothing but soup and jello for 2 days and then had my remicade and it got better for a couple days. Now I am noticing the symptoms starting up again, I have been to the bathroom 3 times today, not diarreah but there is a small amount of blood.
I am wondering if the remicade is starting to become ineffective. I also just did some reading and some of the effects of remicade people have experienced are things I hope to never go through. I have thought more and more about
the surgery. Has anyone had the surgery? Did it help or cause more problems? How about
those on Remicade, do you feel it is worth it to continue it? Did you experience flares while on it? Doctors ask me all the time why I haven't just done the surgery yet considering I have hit the 10 year mark and my colon cancer risk is greater, the only thing holding me back is my fear of a clot or PE and the fact I have 3 young children I would hate to leave without a mother should the worst happen. What are your opinions on this?/ I need to talk to people who aren't doctors and who have experienced all these things! Thanks if you have read this far! God bless!
Post Edited By Moderator (Judilyn) : 6/12/2008 7:15:36 PM (GMT-6)