Scott-
As to whether the level of inflammation I have is acceptable to hang on to, the answer is yes, so long as I am not going to re-stricture and then need endoscopic balloon dilations every 6 months. I do not have any symptoms. It is what you would call "friendly inflammation", in that it is not really affecting my quality of life. But if the J Pouch inlet, which is now dilated to 18 mm, closes back up, and I am once again a blockage waiting to happen, that will start to effect the quality of my life. I think my GI's goal is to control the inflammation in that area a little better than we have, although he has cautioned that I may be as good as I am going to get and I may need to get dilated from time to time. I was pleased that the 3 EBDs I had worked out with no complications, but I am mindful that if we are doing this every year or every 2 years, the law of averages is going to catch up with me as far as a perforation.
FF and SteveG-
Thanks for your input as well. Humira, and a return to antibiotics, are both certainly on the table. In fact, it is possible that the deterioration at the J Pouch inlet may have started when I went off antibiotics a few years ago. I went off antibiotics because I felt good and it seemed like I was taking too much stuff. A biologic like Entyvio or Humira, coupled with a low level of rotating antibiotics, might be a logical change, but we will discuss it and see where it goes.
Just from my experiences in the Infusion Center I go to, it seems like Entyvio is the most commonly used biologic after Remicade. I know my GI is enamored with it, but mainly because its mechanism of action is different than Remicade's. For that reason he thinks Entyvio to be a logical successor treatment when Remicade has not worked out.