Rimi or Not?

[Dave]

I'm sitting in the hospital room with my son (31 hrs old) who has just had his 2nd intestinal resection due to his crohns. He went 11 years before needing this surgery. His doctor is strongly advising going on Remicade, he is worried about the side effects and thinks that he would be better off not going thru all those issues. He is considering not taking it and getting a colonoscopy every 6 months. Then getting on the drug if results show a constriction.

We would love to have some input on this thought.:sign0085:

 

[happy]

Hi Dave,
I am sorry that you are having to go through this difficult time with your son. I have no personal experience with Remicade, but It has greatly improved the quality of life for two family members who are close to your son's age.

One is now an engineer who travels the world. Previously he had a bowel resection and struggled to complete his degree due to Crohn's symptoms ruling his life. He knows when the Remicade is due because he starts to feel just a bit of the old symptoms again.

The other just recently completed the degree that she abandoned in her twenties due to the many hospitalizations for Crohn's symptoms and treatment. She works full-time now and lives out in the country and is able to take care of her property.

Both describe Remicade as a life-saver. You might look under the Remicade sub-forum under Treatment on this forum for comments from people who use Remicade for their treatment.

 

[rygon]

I went on remicade due to being in hospital for 8 days and it was that or have my large intestines removed. Im so glad i tried it. I have had no side effects at all so far (3 infusions). My crohns has now subsided so much that im able to live a pretty normal life now. Stomach pain has totally gone and so has the bloating.

 

[glum chump]

Hi Dave:

It's pretty understandable that the side effects would be of concern to your son. I had the same concerns, but I was really sick and decided to give it a try. Other than feeling a bit tired on infusion day, my initial trial of Remicade (2004) put me into remission and I enjoyed two glorious years of being Crohn's free. Because I'd attained remission, my doctor said I didn't need to take any more and I quit the Remicade. Unfortunately, when I got sick again, I was unable to take Remicade because I'd built up antibodies against it.

Lots of people have found Remicade to be effective, but many also have the same concerns as your son. You might want to check out the Remicade subforum in the Treatment section---there are many fruitful conversations that might be helpful.

I wish your son well in his recovery.

Cheers,

Kismet

 

[Crohn's 35]

HI Dave :welcome: to the forum. I can see why your son is apprehensive...but, I had two resections and then tried Remicade. I reacted to it pretty bad but that is a rare occurance. Usually by the 3rd infusion usually pretty safe after that. They have to list all risks because they were recorded and some are from Arthritis patients and not all Crohns.

He should be on something after, but being on Flaygyl for 2 weeks after helps the intestine fight infections. AS you know resections are not a cure and it still could back even faster. You must feel lost and feel for your son.

Keep us posted how he does, and you are a great father for even seeking our help. Kudos!