Surgery or Next Drug?

Hi all, so my current situation is me contemplating surgery or try the next drug (entyvio). I had 3 double doses of remicade and it did not work (have been on it since december). I was trying to taper off pred twice and when I got down to 10mg and below, symptoms would return. I have even tried going down extremely slowly and still every mg I went down I just kept getting worse. I have tried imuran and other things, nothing worked. I am now making app with doctor to start the next drug, however she said it will be 3 weeks until everything is sorted, if not longer. I am stable of 10mg of pred and cort enemas right now but the side effects have been catching up recently. I've been on pred since last october and I know it is not a maintenance drug, I also know that there are huge side effects. Entyvio takes up to months to start working...do I even have that time before pred really does kick me in the ass? I am planning to start school again in sept and cannot go, I am barely making it through 20 hours of work because now my knee has begun to hurt a lot. I know osteoperosis is a side effect and have been taking calcium. I guess my question is whether I should wait the months to see if entyvio will work or just start booking surgery? I am have pancolitis and have been diagnosed for 5 years. Blood is the main symptom, I seem to go max 5 times a day but the blood and urgency is bad once I go under 10. I am always, always, always, tired. My knees are starting to hurt. I have started to lose all of my hair. I have gained almost 30 pounds. I have acne that won't go away. I have hair growing. All of this is temporqary but I'm scared I will get a per I have begun to neglect friends, running away and making excuses. I cannot concentrate on ANYTHING. I feel like I'm missing out on life.

Total non-responder, unfortunately. Took the test and she found high levels of remi in my body, we thought it was working initially because I felt so good on 40mg of pred and remi but I guess that was the "high" of pred. No, I haven't tried simponi, but my doctor said I will not be allowed to until after trying entyvio. She said if I was to have results I would have had it on remicade, since that drug was highest positive results. I'm only 19 and thinking into the future, I probably should look at surgery as things will just keep getting worse the longer I'm on pred. Stool tests came back, nothing wrong. Did a sigmodo for infections about 2 weeks ago, nothing there either. Says still inflamed, but because I'm so young she doesn't want me to regret the decision since there are fertility issues...but honestly at this point I wouldn't even be able to have a kid if I am like I am now. The weight gain, knee issue, hair, and acne, has all taken a toll on my confidence. I've already missed out on a year of school in comparison to my friends, now I will miss yet another year. Sigh.

If remi didn't work, does that mean simponi might? My GI said because it didn't work that entyvio will be the only class that might work, but the thought of staying on pred for 5-6 more months is a little daunting.

I agree with Nssg. Have a plan B and interview a couple of surgeons. I was a non responder to the meds as well. I even tried cyclosporine. Remicade was the last drug I tried. Entyvio wasn't around yet when I had my surgeries. I was so fed up of being sick at the end that I didn't want to try anything else after the Remi. We all have a breaking point. I'm very happy I had surgery. Best of luck no matter which you choose.

I would look into clinical trials. If I would G-d forbid fail remicade anytime soon I would try a trial.
Depending on your location in Canada you might be able to attend a trial in the US.
I know mt Sinai has some stuff coming up

Only you can decide if surgery is worth it or not. You'll see that a lot of the people (including myself) will say that we only wished that we had surgery sooner. I struggled for almost 9 years before I had surgery, I went from one medication to another with some success but ultimately I was just kicking the can down the road.

Surgery is not easy, especially when you need 3 steps. For me it was worth it but took about 8 months and with my complications I spent 50 days in the hospital.

I also have chronic pouchitis which requires me to take medications, there are no guarantees with this surgery. I do feel much better than when I had UC; I no longer have urgency which was my biggest problem with UC.

I don't know if I'd book surgery right away but I'd definitely speak with a surgeon. I'd also do research to see who is the best surgeon in the area for J-pouches and see if they take your insurance. You want a very experienced surgeon for this.

If the UC is significantly affecting your Quality of Life then you should consider surgery when the medications aren't working.

I agree with everyone regarding a consultation . I've had ups and downs with remicade and after my latest down, I had a surgical consult. While I'm not ready to schedule it yet, it has given me less of a sense of gloom if remicade or other biologics fail. Now I have a surgeon i trust, know all of the details, recovery, which surgery I would need, etc.

As its always said , both here and by my doctors... It comes down to quality of life.