My First Year on Remicade: Managing Crohn's with Ups and Downs

Hi there,

My first year on Remicade to manage Crohn's and things seem to be all right. I have had some ups and downs, good times and bad, but I do think I am winning the game. Managing my stoma is easier without the ulcers, which in turn makes my flange and bag have longer wear times. Leakages are also down; I could count them on one hand. There were times when I would change 2-3 times a day. I can cook a meal and sit down and eat it, as before I would need to rest in between cooking and eating.

I have had some dark days in the past year, kidney stones x2, prolapsed stoma, two teeth pulled, and now fighting a chest infection. To think all that and I do feel I am ahead in the game. I now catch almost every infection that is out there, which is tough with the grandson, just precautions that's all.

I do know that there are people that have nothing good to say about Remicade. The truth is that all the medications do not work for everyone all the time. Most medications have side effects. There are others at the clinics and you tell them about the negative feedback and they are lost as Remicade is the magic drug for them. For now, Remicade is my drug of choice, along with all the other crap they give me. As my doctor said, "Tom, you're in excellent health for a person in your condition."

All in all, I would have to say I would take good health over this any day of the week. It is hard at times and I do fall short some days of what I want to accomplish. But it's my new life and I am going to try to make the best of it. Keeping positive has been many months or years of hard work and it didn't come easy, but I do think it is paying off.



Thank you, Lord, thank you, Jesus

Hi nogutz, thank you for this post. I had my ileostomy in November 2011. I just started on Remicade last week. The usual meds stopped working for me a while ago. Glad to know it's working well for you. I have to protect my small intestine since it is all I have left. What are some of the common complaints you have heard from people who don't like Remicade? Have you experienced any side effects this year? I know it's a very powerful drug. Thanks, Lillibelle

Hi lillibelle, there are posts on the site in regards to the pros and cons of Remicade. For me, I am looking at what it has done for me, and having no ulcers, clearer skin, and more manageable flange wear time is a big step. One side effect would be catching most infections, and with a grandson, almost anything he gets, I will too, if not careful. My last infusion was delayed 2 weeks because of an infected tooth. Always let your nurse know of any infections and treatment that you are under before each time you take Remicade. Good luck.