Crohns and Colitis Exchange
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Mary332 posted:
Hello! Just wanted to say hi to everyone. I was diagnosed with Left side colitis about 6 years ago and have been miserable ever since. I never really been in total remission and just had a week hospital stay at the beginning of July. I doing a little better now. I am on Asacol and Rowasa and just finished a tapered dose of steriods. We will see what happens. Has anyone tried Remicade? My doctor wants to start it but I'm afraid of the side effects.
5 Replies |Watch This Discussion | Report This| Share this:I'm newHello! Just wanted to say hi to everyone. I was diagnosed with Left side colitis about 6 years ago and have been miserable ever since. I never really been in total remission and just had a week hospital stay at the beginning of July. I doing a little better now. I am on Asacol and Rowasa and just finished a tapered dose of steriods. We will see what happens. Has anyone tried Remicade? My doctor wants to start it but I'm afraid of the side effects.
mindyj1971 responded:
Hi Mary! Welcome to the group!
I was on Remicade for a little over a year. I never felt really wonderful while I was taking it, but it did close up a fistula that I had. It destroyed my immune system and I ended up spending a week in the hospital with pneumonia and a C. Diff infection. But, I guess that was still better than having yet another surgery to repair the fistula. The immediate side effects from the infusions for me were always extreme fatigue for a couple of days and a slight headache.
I've had this disease almost 3 years now. I've had 5 surgeries and have been on tons of meds. It wasn't until I had my colon and rectum removed in December 2010 that things finally turned around for me. I have been in remission for a couple of months now:) Feels so good to be back at work part-time and just living again. Currently, I am taking Pentasa 3000 mg daily and am trying to taper off of Prednisone. I have been on the steroids for about 18 months now. Hoping that I don't crash when I go off of them. My bones are already showing signs of thinning from being on them so long, so I just gotta get off of them!
I'm so glad that you are here with us....please keep posting to let us know how you are doing.
Take care and big hugs!
Mindy
I was on Remicade for a little over a year. I never felt really wonderful while I was taking it, but it did close up a fistula that I had. It destroyed my immune system and I ended up spending a week in the hospital with pneumonia and a C. Diff infection. But, I guess that was still better than having yet another surgery to repair the fistula. The immediate side effects from the infusions for me were always extreme fatigue for a couple of days and a slight headache.
I've had this disease almost 3 years now. I've had 5 surgeries and have been on tons of meds. It wasn't until I had my colon and rectum removed in December 2010 that things finally turned around for me. I have been in remission for a couple of months now:) Feels so good to be back at work part-time and just living again. Currently, I am taking Pentasa 3000 mg daily and am trying to taper off of Prednisone. I have been on the steroids for about 18 months now. Hoping that I don't crash when I go off of them. My bones are already showing signs of thinning from being on them so long, so I just gotta get off of them!
I'm so glad that you are here with us....please keep posting to let us know how you are doing.
Take care and big hugs!
Mindy
Report This| Share this:I'm newHi Mary! Welcome to the group! <br /><br />I was on Remicade for a little over a year. I never felt really wonderful while I was taking it, but it did close up a fistula that I had. It destroyed my immune system and I ended up spending a week in the hospital with pneumonia and a C. Diff infection. But, I guess that was still better than having yet another surgery to repair the fistula. The immediate side effects from the infusions for me were always extreme fatigue for a couple of days and a slight headache. <br /><br />I've had this disease almost 3 years now. I've had 5 surgeries and have been on tons of meds. It wasn't until I had my colon and rectum removed in December 2010 that things finally turned around for me. I have been in remission for a couple of months now:) Feels so good to be back at work part-time and just living again. Currently, I am taking Pentasa 3000 mg daily and am trying to taper off of Prednisone. I have been on the steroids for about 18 months now. Hoping that I don't crash when I go off of them. My bones are already showing signs of thinning from being on them so long, so I just gotta get off of them! <br /><br />I'm so glad that you are here with us....please keep posting to let us know how you are doing. <br /><br />Take care and big hugs!<br />Mindy
Mary332 replied to mindyj1971's response:
My immune system is what I'm worried about as well. I am finishing up school right now with my BS in elementary education, and am starting my student teaching in January. I need to get my UC under control so I can teach, but if I start Remicade, my immune system will be supressed. I am worried about being around all the germs in elementary school.
At this point I just want this diseased colon out but every choice seems to be bad... ahhh. Don't know what to do.
It great you are in remission now..how many mg of Prednisone are you on?
At this point I just want this diseased colon out but every choice seems to be bad... ahhh. Don't know what to do.
It great you are in remission now..how many mg of Prednisone are you on?
Report This| Share this:I'm newMy immune system is what I'm worried about as well. I am finishing up school right now with my BS in elementary education, and am starting my student teaching in January. I need to get my UC under control so I can teach, but if I start Remicade, my immune system will be supressed. I am worried about being around all the germs in elementary school. <br /> <br />At this point I just want this diseased colon out but every choice seems to be bad... ahhh. Don't know what to do.<br /> <br />It great you are in remission now..how many mg of Prednisone are you on?
I've been on Remicade for almost 3 years now and work in a hospital as an xray tech and i'm also an EMT for the ambulance. I just really try to keep my hands clean- I wash my hands a lot! I think Remicade has been great to get me into remission, I haven't had any major flare ups. I do have Crohns though, so it's a little different. The worst thing I've noticed with Remicade is that I get really achy joints. I get massages and go to the chiropractor which helps a lot. I don't have too bad of side effects directly after the Remicade, usually a little headache and i'm tired, but I can usually still function. Hopefully that helps a little 
Report This| Share this:I'm newI've been on Remicade for almost 3 years now and work in a hospital as an xray tech and i'm also an EMT for the ambulance. I just really try to keep my hands clean- I wash my hands a lot! I think Remicade has been great to get me into remission, I haven't had any major flare ups. I do have Crohns though, so it's a little different. The worst thing I've noticed with Remicade is that I get really achy joints. I get massages and go to the chiropractor which helps a lot. I don't have too bad of side effects directly after the Remicade, usually a little headache and i'm tired, but I can usually still function. Hopefully that helps a little <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
mattdamonishot responded:
I have been on Remicade since April with ZERO side effects. I do get sick alot though but I feel AWESOEM after my Remicade treatments. I highly reccommend them. I am also on Prednisone 30mg since Dec/10. I HATE it!!!I need to be off it ASAP!!!!
Report This| Share this:I'm newI have been on Remicade since April with ZERO side effects. I do get sick alot though but I feel AWESOEM after my Remicade treatments. I highly reccommend them. I am also on Prednisone 30mg since Dec/10. I HATE it!!!I need to be off it ASAP!!!!
HannahLeigh89 replied to Mary332's response:
Don't worry too much about getting sick. Just wash your hands a lot and encourage your students to do the same. Keep some of the Lysol or Clorox wipes around and wipe down your desk and their desks and the doorknob and other things they touch a lot whenever you think of it, and try not to touch your face too much.
Kids are germy little creatures, but you should be fine as long as you wash your hands.
Kids are germy little creatures, but you should be fine as long as you wash your hands.
Report This| Share this:I'm newDon't worry too much about getting sick. Just wash your hands a lot and encourage your students to do the same. Keep some of the Lysol or Clorox wipes around and wipe down your desk and their desks and the doorknob and other things they touch a lot whenever you think of it, and try not to touch your face too much.<br /><br />Kids are germy little creatures, but you should be fine as long as you wash your hands.
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