Thanks Lavender and Ivy!
I am a bit fuzzy today--had a seton placed and am still reeling from the anesthesia : )
I had a resection in 1991 --20 inches, slightly more small vs. large intestine and did well with no meds until about the 14th year. I was able to have two children and other than very quick transit of food, did okay. However, I ended up with kidney stones (due to absorption issues) as my main problem.
A few years ago, it all came back. I had fistulizing intestines and tons of inflammation with a pretty bad stricture. I did prednisone, which helped somewhat and then imuran, gradually upping it to my optimal dose. I did remicade for a year--basic dose for about 6 months or so and then they doubled it. I noticed a marked improvement on the doubled dose and not much of anything with the regular dose (I believe it was the 5mg.??), but still had scar tissue that the remicade could not touch. I tried a course of Humira as a last ditch effort before surgery. I didn't notice much of anything, but at the point I was really dealing with scar tissue so it is hard to say what the drug can truly do for me. To add to the complication, I had a kidney stone drop down into my right ureter--right underneath all of the intestinal inflammation mess and it damaged the ureter, causing my kidney to swell. So, last June I ended up with another resection (all but one inch was small intestine) AND a ureter resection. It was declared a success (9 days in the hospital) and I stayed on imuran (50 mg) as a maintenance drug. I did okay until about Feb. when I started having cramping, etc. My gastro put me on a course of antibiotics and upped the imuran. Then, low and behold, at the end of April--my fist abcess! It was drained by a colorectal surgeon and developed into a full-blown fistula. So, now I am waiting for approval (again) for remicade.
I love, love, love my gastro. She is the best in the area and she is determined to not let this disease take control again. If I can tolerate it, I think Remicade is a good place to start. It did help my fistulizing tracts of small intestines previously. . .don't know if it can help with the fistula I have now but I am hopeful. If I don't respond/become allergic, the plan is to move on to the other drugs. The infusion part is a drag- half day off of work at the least, but if it works . . .
My doctor's office is putting a rush on my approval, but it is hard to say how long it will take. She would like me to get in next week if possible. I'd like to get started because I am a teacher and would love to get this loading dose out of the way before summer is over.
Take care! I really appreciate your thoughts on this! It is a lot less scary when I can hear how others have dealt with it all.