Crohn's Rides?

[Aggie_Ama]

Don't just stand...train! Might as well, you have to train anyway.

There's a group of ALC riders who set up a fund raiser on a rainy day in SF indoors on their stationary trainers

Every year the University of Texas does this before their 4,000 mile ride for Cancer. It might not work in Austin. I have never seen it done in the town I went to school at, maybe I could try there? My wheels are definitely spinning, which is better than my head. It has been spinning since DH started getting sick 8/25. This is much more productive.

[uk elephant]

As Mother Duck (Duck on Wheels) and Auntie Trek (Trek420) said, I have chron's and I'm riding. I was worried about making the $2500 target for ALC too and almost didn't sign up. But then I decided to do it anyway. I started sending out letters to people this week (so no response yet...) and I started my cookie sales this week. I brought them in to my work yesterday and to BF's department today and so far I've made $25 profit. Not much in the big scheme of things, but it's a good start and I plan on doing this every week so it should help.

So my recommendation is to find a ride that you can make it to date-wise and sign up. I'm certain you won't have too much trouble getting the donations in.

[pyxichick]

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.

I just wonder whether they're really trying to find a "cure" or whether they'd rather we rely on their products for the rest of our lives.

On the other hand, my sister, who has Crohn's, did a fundraising thing for them so she could go skydiving, and she said it was one of the best experiences of her life. So I guess if you're doing it as something for yourself, then go for it.

Just my opinion. I've thought of doing the get your guts in gear ride, because it would be cool to meet other cyclists who have IBD, but I figure there are better places for my charity.

In any case, I hope you find a way to support your family members with IBD. It's not something I would wish on anyone.

cheers,
Kate

[KnottedYet]

We celiacs should jump on the IBD, UC, Crohn's bandwagon, too. A little higher in the digestive tract, but also autoimmune.

I was very interested in the Guts ride last year, but quailed at the fundraising.

Maybe I could volunteer to help with the ride.

[Aggie_Ama]

.

Just my opinion. I've thought of doing the get your guts in gear ride, because it would be cool to meet other cyclists who have IBD, but I figure there are better places for my charity.

In any case, I hope you find a way to support your family members with IBD. It's not something I would wish on anyone.

cheers,
Kate

Kate- Where would you channel your funds? I honestly am interested not in drugs, but a cure. I have found a lot of information on how to help my husband through diet, but I also have found there is only a moderate success rate. My husband's doctor is fabulous, if he feels remicade is needed we will stick with it. Right now keeping my husband off the operating table, out of the hospital and out of pain is my number one priority.

What I want is not to connect with others that have IBD, I don't have it. I want to find a way to channel my energy into something other than frustration. My dad is currently in remission from colon cancer, my husband just got diagnosed with Crohn's, I have a lot of anger I want to use positively. People should not have to deal with the pain these very important men in my life have dealt with.

I am actually intrigued by doing something with my husband and donating the funds to a worthy cause. We just need to find something people will want to support. Maybe we could tour a self (family) supported tour and raise funds. I am still just brainstorming.

[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.

[Aggie_Ama]

I did find that CCFA does receive money from Centocor, the people who developed Remicade. I am still not sure CCFA is the worst organization to back though. I did find some other people working on research in Crohn's. Off to ride, I will bookmark my search for the rainy day forecasted tomorrow!

One group, Paratuberculosis Awareness & Research Association (PARA), is doing research on the correlation between Mycobacterium avium subspecies paratuberculosis (MAP) and crohn's.

It appears Johns Hopkins has a large area devoted to research on digestive disorders, but seem to be focused on colon cancer more than Crohn's. They also have research focused on autoimmune disease.

Cedars-Sinai Medical Center has a group dedicated to researching IBD.

[pyxichick]

Amanda,

I'm not sure who I'd give money to. I sort of stopped doing a lot of research on the topic once my own drugs (6MP for about 10 years now) started keeping my symptoms at bay.

But it's a great idea to do your own fundraiser. Crohn's and Colitis seem to be way more prevalent than one would think, once you start talking to people about it.

I'd love to take part in some sort of ride where I knew the money would go toward finding a cure!

I wish your DH good luck in dealing with his Crohn's. You're a great partner for wanting to do something positive in response to his diagnosis.

Take care,
Kate

[paigette]

It may be a good idea to contact your alma matter--A&M--and see if they can help out. They already sponsor the Tri-County Hill Hopper Bicycle Ride which helps out an organization for children with special needs, but there may be another Aggie organization interested in creating another ride.

P.S. I have IBS & get tested for Crohn's every year, so if you get something started, let me know.