Crohn's Rides?

[Duck on Wheels]

I don't want to sound all cynical here, but I have a problem with CCFA. It's a creation of a drug company. Drug companies make lots of money off people like me who have UC and need to take drugs for the rest of our lives to treat our disease. I used to go on their website to do research and such until I realized that they devote nothing to any sorts of natural treatments or cures. It's all about the drugs.

This is a problem with many self-declared patient interest groups -- they get sponsored (and co-opted) by drug companies and the research funding they generate gets directed into certain areas while other areas get neglected. For instance, most research on breast cancer goes into drug research or into research on causes we ourselves might be responsible for (diet, smoking, exercize, etc.) while there's very little research on environmental causes.

But if we do a "virtual" charity ride, we could donate our funds anywhere we agreed on. So one way to spend that frustration energy now might be in looking up where promising research is happening. Where are people looking into causes of IBD? Where is there new basic research going on about the physiological processes of IBD? It was that latter kind of research that I recently read about that seems about to result in a new treatment for psoriasis (and possibly other auto-immune diseases down the line). Or what about research on "alternative" treatments? If you find something promising, maybe a lot of us Crohn'ies could be sold on the idea of a virtual ride to gather some extra funding for it.

The immune suppressants (such as imuran or remicade) do help. Your dh should soon be in remission, and there are milder drugs than remicade that may keep him there, hopefully without overly burdensome "side" effects. ("Side" is in scare quotes because all effects are equally central from the point of view of your body's physiology.) But in the long run, we'd like to see more and better options on the table.