Crohns and Colitis Exchange

So Thursday I had an appointment with my doctor. I knew the Humira and methotrexate hadn't been working as well as I had hoped because I have still been having pain and some other problems. She decided that we should do another scope to see just how badly things had progressed. I got to watch this one, as well as the one in July, and the difference is quite scary. The few little ulcers that she found in July are still there, but they are much larger and angrier looking. There's one ulcer in my pouch that is very large and bleeding quite a bit, and the rest of my intestine that we saw is eaten up pretty badly. Tons of tiny little ulcers everywhere.

In July, she upped my medication from Humira twice a month to every week to try to get those few ulcers cleared up, and as I said, that didn't work. She said that we could go back to Remicade, but it probably wouldn't work because I didn't have that great of results from it the first time, and now my body has most likely built up antibodies to make it even less useful. Generally Imuran would be prescribed with it to help reduce the problem from the antibodies, but I can't take Imuran. The medication she wants to try me on is called Tysabri. I had never heard of it, but it's apparently some pretty scary stuff. It's used mostly for MS, but it's approved here for Crohn's also. Europe hasn't approved it for Crohn's because they say that the risk to a person with Crohn's is too great in comparison to the benefit they would receive.

I'm really quite afraid of this new drug, but I have some time to decide because there are tons of hoops you have to jump through to even have it prescribed to you. Most doctors can't prescribe it. My doctor has said that because of my response to all the other medications, this is probably my last shot. Tysabri is used as a last resort type thing, but she also said that in about 30% of patients, the reward is tremendous. The risk just happens to be that in about 0.1% of patient's prescribed the drug, they develop a brain infection that generally results in death within six months. She said that nobody has ever developed the infection while being on it for less than a year, and she wants to try me on it for about four months and then do another scope to see if it's cleared anything up. If my scope is clear and I'm feeling better, she said then we could decide it if was worth the risk of being on it long term.

I'm scared because if it doesn't work, I'm screwed, and if it does work, I'm still screwed. How do you decide between disabling stomach pain and becoming mentally handicapped or dying? And what happens after the four months, either way? I know my risk goes way up if I decide to use it long term, but like I said, I'm kind of damned if I do and damned if I don't. I can't just NOT treat the Crohn's, because of the risk of losing my pouch. My risk of colon or rectal cancer is gone, but if my pouch gets too damaged, I'll lose it and have a permanent ostomy. And I don't want that. I love my pouch. Plus, with how severe my disease is getting, even with treatment, I can't imagine without treatment. I may not be responding well to it, but it has to be helping a little bit.

I just need some insight and some opinions. And any information on Tysabri or other options any of you have heard of. Besides dieting. I'm past the point of diet controlling this. Thanks guys, and sorry my post is so long. I'm just freaking out.