new to group

I am 35 and have been living with Crohns for over 18 years, felt things were pretty much under control until the last 3 years and now no meds are working and I have tried them all.  My last choice is Tysabri... kinda scary since a rare side effect is a brain infection that results in death.  So trying to make a decision as to what to do. 

If you were to have surgery to remove the affected parts, how much bowel will you lose? If it is a few cms, perhaps it makes sense to go ahead and cut it out, and go back on some other maintenance med, and just recover from surgery and hope that the surgery induced remission lasts a long time.

If surgery is will take too much bowel, I guess it would make sense to try something else, Tysabri, or try to get into the Vedolizumab trial (which I think doesn't have the risk of PML) or the like. Have you tried combinations of meds? Like remicade with imuran/mtx and pred? You probably have, but some doctors are wary of prescribing them together because of the higher risks of cancer. If you haven't tried that already, I'd suggest that over the Tysabri. What about TPN to give your bowels a break?

I hope you get some relief soon.

PV

Welcome to Healingwell!

If you have tried all the medications and want an alternative to starting Tysabri, have you considered giving enteral nutrition a try? It would mean sticking with a special liquid diet for a few weeks to induce remission, and then if you wanted you could use the same liquid formula as a supplement to regular food and beverages to help maintain remission. This is an old treatment for Crohn's and can be as effective as steroids, but doctors in the US don't tend a mention it because they think it's too hard for patients to stick with a liquid diet for a few weeks. In most cases, insurance will cover the cost of the treatment if you're persistent, as it has been proven effective in published, randomized, clinical studies. Good luck with whatever you decide to try.