Crohn's is a crazy puzzle!!!

Hi everybody! I've been a member of your forum for a while, but haven't ever began with a story, and haven't been back here for some time, so thought this might be a good place to begin. I've been diagnosed with IBD for 12 years now, took them about 4 years to determine if it was crohns or ulcerative colitis...crohns it is. That was finally determined with a blood test sent to some California lab. I have to say its been a roller coaster ride of meds and my compliance and non compliance, but all in all, listening to some of your stories, I feel lucky to never have had to have any surgeries. I've had my crazy bouts of bathroom craze, feel like crap most of the time, my eyes stay red when my inflammation kicks up and I can barely drag myself around. My GI doc finally put me on Lialda which allowed me to start eating healthy, I could finally tolerate salads and grains and beans and all the healthy stuff, I started feeling much better. I started yoga classes which helped a bit with my arthritis, I haven't found anything I can take for that other than tylenol so far. Then I started feeling very fatigued again and almost flu like symptoms and left abdominal pain, but okay BM's. My doc did a colonoscopy (which he now says I need yearly!!! What??? and says I have moderate inflammation still, an ulcer, diverticulum, etc; and that we have to change meds because Lialda is not working! What???? Thought you could assume if BM's were pretty solid, all is well with CD....NOT!!! and also, inflammation and stuff is on the right, so left pain is refferred!!! Crohn's is a crazy puzzle!! So now we began talking Humira, and I find out since I have an allergy to latex, can't do that one. So now he wants to start Remicade, you guys sound fairly positive about that one, although I have to say it scares the hell out of me! The nurse told me it was a chemo drug!!! There is a natural healing book that I have also, but I am just so puzzled right now about which road to take. I also have problems with my esophagus and have to have it dilated occasionally because of strictures! Life in G.I. world is crazy! So I am happy that this forum is here, I work in the health field and recommend it often.

The nurse is wrong. Remi is NOT chemo. It's an infusion, as is chemo, but that's the only similarity. I've had huge improvements on Remicade and I've only had one infusion (12 days ago). It's a great drug!

Hey thanks chrisnsteph....I'm feeling better about it already.

I was on it for almost 2 yrs. Never had any side effects and remission doesn't even come close to describing how good I felt!

Ducey, thanks! Its sounding more and more promising.

I've been on it for over 5 years and it has helped tremendously with the Crohn's symptoms.....

If you root around the Remidace sub-forum you will find a lot of information there.

I read a lot of the posts on the remicade club....glad to hear you have been on it for 5 years, I guess no major side effects? I'm wondering also about the cost, the nurse is currently checking with my insurance to see what they cover. It sure is good to hear that it helps, I understand that it helps with the arthritis as well, so that I will be grateful for as well. Thanks pasobuff!