Fed up...resection time.

I'm beyond fed up. This past year has been horrible. I've done a stint on Pred and Entocort and 6 months of Levaquin. I've had 2 ct scans, 2 MRIs, 4 ER trips, an abscess drainage and a hospital stay. I've been on Remicade for 4 months. I'm hanging on, barely. My appetite comes and goes. I'm struggling to put a few pounds back on. I'm on a low residue, white, no meat diet and it's driving me crazy. I'm exhausted ALL the time, even after sleeping 10 hours. I nap constantly. If I eat the wrong thing, I can feel it "get stuck" in my stricture at my ileum. No pain, but I feel blocked up before it moves on. It's scary.... Though the worst thing is I have a draining fistula on my stomach out of my surgical site. I don't even know what's going on with the fistula attached to my bladder.

I'm done. I can't get out of this flare. Medications have failed me. Diet has failed me. I'm done. I scheduled a resection for July 18th. I just want to know if anyone has any advice on what to expect/what it's like afterwards? How long recovery takes? How long before you could eat? Felt normal? What to take to the hospital? I know nothing!! I was lucky enough to have a toothbrush in my purse for my last emergency hospital stay.

I had my first resection 6/1, took 30cm of sb plus appendix that got snarled up in the mess.

The biggest fight is fatigue, it's overpowering but slowly getting better. I can move around OK, the pain comes from the stomach (I couldn't have a lap). I'm told 6-8 weeks before normalcy starts to come back, still waiting on that.

I was in the hospital 9 days, had some complications with a jp drain that was in that had settled into a group of nerves somehow and I couldn't walk...boy that was fun when they took it out. Don't let that worry you though, apparently it doesn't happen much.

I was back on solids while still in the hospital and am doing fine with food now, trying to put some weight back on.

Here's what I will tell you. I've spent my life fighting through whatever happens. Get the flu? Pfffft, I can still work and do all my chores, nothing is going to stop me! Well, this did. Be prepared to get help from others at first. It's not the pain, it's the fatigue. If it was just the pain I could have done my grocery shopping the day I got home...but man there's just no way. Do what you can before you go in to prepare. If you won't have much help, get food ready. make and freeze stuff you can just re-heat, stock up on pre-prepared stuff.

I'm getting to where I can do things around the house in short bursts. The one chore I find the hardest is emptying the dishwasher. All the bending and moving around is a killer (even writing this is depressing, I used to be in such good shape). The rest I just go for a few minutes at a time and seem to somewhat keep up.

I'm not there yet, but I'm still pretty hopeful that this was a really good thing. That section they removed was causing me massive problems and I can't wait to be healed up again.

I had my second resection Jan. '10 and I don't regret it a bit. In fact it was the best thing I've done. I was like you, I could feel food getting stuck in the stricture causing pain and more inflamation. They only removed the stricture about 6" of the ananstamosis site. The surgeon said it was the tightest one he had ever seen and didn't know how I was managing to eat solid food.

Recovery was overall about 6 weeks for me. My GI said to give it 6 months for the bowel to settle down after surgery and he was about on track. The only other thing I have to do now is take a bile salt binder to get rid of the excess water in my stool. It works great and I can eat most everything now when I'm not flaring.

Good luck, I hope this brings you some relief.