Thinking about surgery; your experiences and advice welcome

I'm new to the forum but not the disease. I was diagnosed with Crohn's in 2002 and the disease has mostly been troublesome in my TI but has also been active in my colon and rectum. I've been using Humira since 2008 when I was having a bad flare. The Humira worked well until July 2012 when I started having D and abdominal pain, since then I have been battling flares with roughly 2-3 months when I have felt somewhat ok. Since 2012 I have been put on Entocort 3 times, flagyl, cipro, and in July 2013 increased my Humira to 1 injection weekly. I had an MR Enterography in Nov 2013 which showed that the inflammation in my TI has decreased since July 2013 when I had a CT, but that there is still active inflammation. Then in December I had a colonoscopy which showed inactive disease in my colon but ulcerations at the ileocaecal valve, the dr. was unable to go beyond this point because of a stricture. When the doctor went over the colonoscopy results he said that our next step may be an elective resection and wants me to come back in 2 months to discuss surgery as an option with him.

I have been feeling pretty well, haven't had d in a couple weeks although I'm nauseous and have abdominal tenderness every day. I'm on the fence about surgery, and feel like maybe I don't feel bad enough to have it. On the other hand, I can't remember the last time I felt great and if I could get that out of surgery maybe it is time to do it. I guess I'm hoping some of your experiences will help me in my decision making process.

I was diagnosed with CD in the large intestine and in the rectal area in 1989. I had 18 inches of my large intestine removed in 1998, and I have felt better since the surgery. The surgery was pretty much a "must do," as my large intestine essentially closed up and I could not keep anything down. The surgery and recovery was a bit of a drag, but I did not need a temporary or permanent colostomy. I am still on meds (Remicade, Canasa, and 6MP), but the results of my most recent scope (Monday) showed that there is still some scarring and minor inflammation. So, while I thought the surgery would be a cure-all, it wasn't. Since the surgery, however, my docs have been able to keep it relatively under control, and I have been able to lead a pretty normal life (I still run, work, golf, fish, etc.), but there are times when I do not feel great. I guess my bottom line is that if you cannot continue to function normally and your docs think the surgery will help, then go for it. The one thing I had going for me was that the docs told me I would not need an ostomy; had they told me I would have needed one; I might have been more reluctant. I know people who have had them adjust and might be mad at me for saying that, but I did not want one at 30 years old.

Good luck!

I am with Myrne on this one... I am partially obstructing, and it seems to be getting a lot worse. I am in NEED of surgery, because the potential of me having a full obstruction is pretty great... sadly due to so much scar tissue. They always talk about delaying it as much as possible. Now that I am on Tysabri and it is helping me, the hope is that it will put me in remission when these bad parts are out... I will not drop medicine just because of surgery... that would be stupid on my part (and part of the reason I got into this mess after my last surgery in 2007, as no medicines were working and the disease just moved).