Bruce, I'm sorry you're having this problem. First of all, Remicade is no longer the last option. Humira is now being uses, and there are newer drugs being tested also. The rate of development of new treatments for IBD is accelerating so much now, it's hard to keep up with it.
Remicade is usually given as a remission-producing and maintenance drug, which means most doctors recommend you stay on it. Some people do go off, but the risk is that there'a a 50% chance they won't be able to use it again if they go back into flare. When started and stopped, antibodies tend to develop that produce allergic reactions if the drug is re-started. You don't become "dependent" on Remicade. It works by blocking certain proteins in the blood (tumor necrosing factor - TNF) that contribute to the inflammation. When you stop taking the drug, the TNF comes back any you're back where you started. Eventually, you will probably develop enough inflammation to flare again, just as you do when stopping medications.
Perhaps looking at your situation from a different angle would help. You have a chronic condition that isn't going to go away. Therefore you likely need chronic treatment that doesn't go away. In your case smoking works, at whatever cost to the rest of your body, so that's an option. Medications also work, but can have some side effects too. Try thinking of your colon as a bridge. When you design a bridge, you put features in to support the bridge's weight where it is suspended, right? Do you remove those once the bridge is completed? Your meds could be viewed the same as those design features in the bridge.
As a former smoker who also developed UC after quitting, I would never smoke again and I wouldn't recommend it to anyone else. But that's your decision to make. As a person who made the decision to start Remicade two years ago, I've never regretted it. But that was my decision.
Think of all the options and future choices before you decide. Also, if your life is miserable now, is that a fair trade off for postponing surgery? And remember, it's likely you wouldn't need to have a permanent ostomy if you did have surgery. This is a frightening disease, and every next step I've had to take has scared the heck out of me, but I finally got myself to a good place. I hope you'll get to your own good place soon.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal, Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
Co-Moderator UC Forum