I am new here, but ran into this while doing some research on Remicade costs. Crazy! But have to consider as I do not want another operation if I can avoid it.
Many I have spoken to say Remicade is the best thing since sliced bread, but they are older (77+yo) who had severe arthritis, allowed them to not be wheelchair bound. As for Crohn's, I hear it does great for that too, but what a cost!
I was diag. in 1976 (dark ages) with regional enteritis (Crohn's Disease) and have run the mill of drugs and therapies, surgery in 1996 removed 12in. then surgery again in 2006 removed another 12. No colostomy though! Do not want a third if at all possible, I am getting too old for that stuff (although what a diff 10 years makes in surgical procs!)
I have great docs at Mayo and have been in remission (for the most part) since 2006. But worry how long til next surgery or should I spring for the Remicade to avoid. Docs tell me that it would be dual therapy with the 6-MP as that has shown good success.
I have a 6yo son and want to maintain good quality of life for long long time, hoping that is possible.
I have learned to endure a lot and have extremly high tolerence to pain, given that I have perservered with this sucking cronic disease for over 30 years.
My advise to newbies of this affliction...... learn bio-feedback, listen to what your body tells you and seek out excellent doctors, get rid of the ones who are not on the cutting edge or have your best interest at heart, they are out there, just a bit harder to find.
Would appreciate feedback on my Remicade contemplation. I do have great insurance but it is the long term I am concerned about.
50yo Computer Tech w/ Crohn's Diagnosed: August 1976 at 17yo
Whole gammut of meds...Sulfa drugs to start, lots of prednisone for a long time (Osteoporosis), Asacol, Entecort, Flagyl..name a few.
Now 6-MP, multi-vitamins, folic acid, calcium citrate, fish oil, holy basil, good diet & exercise.
2 surgeries, 1996 & 2006, 22 inches removed but luckily no bag.
CD is currently under control. Contemplating remicade. Life is one big medical experiment!