need advice...remicade seems to not work

3 c-scopes would be excessive, but the sig scope would probably be a good thing at this point since you're experiencing no improvement. The doc should be able to tell if you're improving on a visual level, however....if you're worse, then maybe there's something else going on.

I do hope he will take some biopsies.

Again, I'm going to ask if you would consider rectal meds or is there a reason you can't use them?
If 5ASA meds isn't a possibility, what about a mild steroid rectal foam such as proctofoam?

Let us know how the test goes....

quincy

were you on the remi at the same time? What about the 5ASA such as Rowasa?

Are/were you on any of the oral 5ASA meds such as asacol, etc?

q

It sort of does seem like a lot of scopes, BUT- it's really the only way for your GI to know what's going on in there. Especially if you're thinking the Remicade is not working. Prior to myself starting Remicade, I had a flex sig done, after having just had one done like 3 months prior. Just to "make sure" we were looking at what we thought we were looking at. And I had a full scope done a few months prior to those! Sooo... at least once the flex sig is done, you'll have your answer re. the Remicade- I refuse to switch to Humira until I get another full scope done, to assess how much, if any, my colon has changed since starting Remicade. It's working ok for me these days, not great, but good enough to continue. For now! Good luck!!!! It's scary when that drug starts to lose effectiveness. Believe me, I know & empathize~  Re. rectal meds- if a powerhouse drug is not helping you much, it's doubtful that rectal meds will do much either. I think they work wonders for mild ulcerative proctitis, but anything above & beyond that.... not so well. They won't hurt, but I don't think you'll find amazing relief from them.

You may want to consult with a surgeon and learn about your surgical options. Remicade worked for me for quite awhile, but now it is not, so I met with a surgeon over the summer and decided to have j-pouch surgery this winter. It's a big decision and one I was adamantly against for several years, but you know what? It is what it is, I can't keep living with my UC symptoms and have an enjoyable life.

Consulting with a surgeon does not mean you have to abandon your medical options, it just means you are getting more information and giving yourself more options should medications still seem elusive in controlling your UC.

Check out the boards at www.j-pouch.org. I also found several other good sites which I have posted here in the past. If you can't find them feel free to PM me.

Meesh

I agree completely with Eva Lou and with Meesh that it may be time to start talking with the best colorectal surgeon that you can find. You must have a ton of questions and the last thing you want is to have to make a quick decision. Talking to a surgeon does not mean that you are going to have surgery. My son HAD UC for two years that just got worse and worse with every flare to the point that none of the drugs were working for him. At the beginning, surgery was a word that he would not even mention. We spoke with many doctors and people who had been through this and finally reached the point where my son had a terrible quality of life, his whole body was very ill, and he decided that enough was enough. Early Sept he has his colon removed and I can tell you that, for him, this was absolutely the right decision. He now is completely healthy, has blood work that comes back NORMAL and has more energy than he can remember. I am not saying that this is a walk in the park....it is not...but we got through it and it has been so worthwhile. In January he will have a J pouch built and of course we are worried and I know there will most likely be bumps in the road, but I also know that since he is healthy it is all doable.

As for the scopes....my son used to have a flex sig done every time he went to the GI so he could have a peek to see what was going on....however he was pretty sick. To the docs it is not a big deal at all to do one and nothing is better that visualizing what is happening. You can be feeling better but the mucosa may not actually be healing. It is important for them to know.

As for the remicade. There are a lot of people out there that do not start to get relief until after numerous infusions. I would not give up yet if you can manage okay.

I wish you all the luck. You are in such a hard place right now but one that most of us have been through.