Hello, I'm new here

I found this site while looking for information about the side effects of Remicade. I'm retired in my late 50's and lived with Crohn's for most of my life. The big flare 15 years ago left me on the bag. I've tried various treatments and found that they are often worse than the Crohn's itself. They start out like miracle cures as the Cipro and Azathioprine did only to create side effects later that are worse than the disease.

I am going to get my first Remicade infusion in a couple of days and I am quite nervous. My Crohn's is back into remission as it often does in winter. I have a small fistula that is of little bother, but have a larger one that is painless but produces blood on a daily bases on the wall of my rectum. It used to be painful, but in the past year it no longer hurts but continues to bleed. It comes on like a bowel movement and the first blood and mucous is dark and does not smell good, then two hours later I get the urge to excrete again and the blood is brighter red with mucous, then for the rest of the day I am good. The MRI shows a long thin pocket formed by a hole in the side of the colon wall on the rectum. The Dr. feels that it can be controlled better and may heal up with Remicade.

I am a bit nervous as I am on an even keel other than the bloody discharge, sleeping well and eating a good balanced diet. I am trying to weigh the risks. Should I go on treatment or stay the course without? I managed to stay away from being hospitalized since the big one 15 years ago. My old Dr retired last year, and I have only seen the new Dr. on three visits and he seems determined that Remicade is the way to go.
Any thoughts or advice welcome.

Hi and welcome. I only joined yesterday and already I'm feeling welcome and supported.
I don't have personal experience with Remicade but know someone who swears by it. That being said, it's so individual. You won't know until you try. I try not to read too much about side effects because it messes with my mind. Lol I just look up my symptoms as needed. I know it's scary though, as these drugs are so hardcore. I'm on a second treatment regime since my first kick at the cat failed. Presently on predinsone and MTX injections. Only 5weeks in so no change yet. It's not been fun. But, all we can do is try and if it doesn't work, move on to the next but try to remain hopeful that this will work for you. Hugsss

Everyone is a little different. You might do well with it. I had a rare reaction. I had a reaction where I had a lesion that had to be removed

ronroush7 said:

Everyone is a little different. You might do well with it. I had a rare reaction. I had a reaction where I had a lesion that had to be removed

Click to expand...

That's awful!!! What is your treatment now?

Stelara, Imuran, Colestpol, Lialda (all for the Crohn's) and synthroid for my thyroid.

That's a lot....but gotta do what works. ;-)

Welcome to the forum. My doctor retired last year as well
If you have fistulas, you are not in remission. You should also be concerned about a rupture if you have a hole. I have been on Remicade for about 18 months, and it's kept my fistulas closed. I have a scope in a few weeks to see if the insides have healed as well. We have a forum for Remicade here http://www.crohnsforum.com/forumdisplay.php?f=58
I haven't had any side effects other than fatigue, but everybody is different.:ghug:

I forgot I also take a probiotic.

I'm not looking forward to the Remicade, but will try it, tomorrow will be my first infusion. All the other treatments ended up worse than the scourge, and over time I had better success controlling my Crohn's through diet, reducing stress and moderate exercise. Flagyl , cipro/azathioprine was awful, so was Prednesone except for the benefit of beard growth. All these made me fell worse the longer I took them. The new GI doc commends Remicade, and the whole cost is being paid by insurance so I ought to try it.

Back when I had the big one in 2001 I had to have half my colon removed along with my appendix and a length of small bowel. The resection is getting narrow, and I have inflammation around the stoma that rises and falls along with the two fistulas. Its been almost 15 years but I have managed to stay out of the hospital and ride out the flares.
Living with the bag is not easy, but it has provided life.

Bufford said:

I'm not looking forward to the Remicade, but will try it, tomorrow will be my first infusion. All the other treatments ended up worse than the scourge, and over time I had better success controlling my Crohn's through diet, reducing stress and moderate exercise. Flagyl , cipro/azathioprine was awful, so was Prednesone except for the benefit of beard growth. All these made me fell worse the longer I took them. The new GI doc commends Remicade, and the whole cost is being paid by insurance so I ought to try it.

Back when I had the big one in 2001 I had to have half my colon removed along with my appendix and a length of small bowel. The resection is getting narrow, and I have inflammation around the stoma that rises and falls along with the two fistulas. Its been almost 15 years but I have managed to stay out of the hospital and ride out the flares.
Living with the bag is not easy, but it has provided life.

Click to expand...

Flagyl and Cipro are brutal. I had a course prior to my crohns diagnosis and it made me so much sicker. Terrible stuff. Hope you do well with the Remicade infusion. My gi Doc has already told me that will be the next root for me if MTX fails to work. Hugss

Its been two days since my first Remicade infusion and last night I started getting a toothache and it seems like most of my teeth feel sensitive to cold and hot. I did a Google on the internet and it appears that I am not alone on this. I would like to start a new thread about this, but I am extremely limited in my computer skills and do not know how.

DanaBanana said:

Hi and welcome. I only joined yesterday and already I'm feeling welcome and supported.
I don't have personal experience with Remicade but know someone who swears by it. That being said, it's so individual. You won't know until you try. I try not to read too much about side effects because it messes with my mind. Lol I just look up my symptoms as needed. I know it's scary though, as these drugs are so hardcore. I'm on a second treatment regime since my first kick at the cat failed. Presently on predinsone and MTX injections. Only 5weeks in so no change yet. It's not been fun. But, all we can do is try and if it doesn't work, move on to the next but try to remain hopeful that this will work for you. Hugsss

Click to expand...

Welcome to the group. There is a thread in here specifically for people on Remicade. You might want to try it.

ronroush7 said:

Stelara, Imuran, Colestpol, Lialda (all for the Crohn's) and synthroid for my thyroid.

Click to expand...

I forgot to mention vsl 3

I can't use Flagyl anymore cause it makes my hands numb.