Crohn's Disease Forum » Ulcerative Colitis Forum » CCFA email...Research Survey.

07-12-2011, 07:15 PM   #1
Join Date: Dec 2010
CCFA email...Research Survey.

I was exasperated by this survey, by the time I had finished it.

It asked me all about my surgeries, diet (in ridiculous detail), exercise and medications. It asked me nothing about medical marijuana! It had no place for me to express that since I started using medical marijuana, my health has been near perfect, I can eat anything I want and my disease stays in remission, without using any other medication. The only times I have outbreaks is when I can't get hold of marijuana...

Why did they leave this question out? They now have a completely inaccurate picture of my battle with UC.

Anyone else feel the same way?

07-12-2011, 07:23 PM   #2
Chief Dandelion Picker
Entchen's Avatar
Join Date: Mar 2010
I have not seen the survey, but I am often exasperated when I read surveys (including the ones that I created early on in grad school, lol) -- so common for researchers to ask the questions that *they* think are important or that they think will avoid any controvery (like your topic). Frustrating indeed. There ought to be at least a place for you to write in your own responses.
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
07-12-2011, 07:28 PM   #3
Join Date: Dec 2010
Just sent an email to CCFA expressing my disappointment. Imagine the silliness of possibly ignoring a (virtual) cure that is sitting right in front of you!
07-12-2011, 09:58 PM   #4
Join Date: Jul 2010
The CCFA is sponsored by almost all the major drug companies that treat IBD. Them in any way supporting medical marijuana wouldn't be a very good idea from a financial standpoint...

The above is the CCFA's stance on MMJ. The article is so full of contradictions, it's infuriating. I mean, they didn't even spell marijuana correctly in the URL of the article! Terrible.

The head of CCFA's scientific board said:

As for symptom alleviation, Dr. R. Balfour Sartor, chairperson emeritus of the NSAC, has expressed strong opposition to marijuana as a palliative in IBD: "Because IBD is an illness that lasts a lifetime, patients and their physicians should concentrate on discovering the cause of the symptoms and pinpointing a treatment that will control them without causing adverse side effects. Using a substance such as marijuana to alleviate symptoms only masks the actual problem."
So I'm guessing he doesn't support prescribing ANY of the drugs that treat IBD at present since NONE are a cure and all have side effects? Oh, only from the companies that sponsor the CCFA. Maybe we should get MMJ dispensaries to sponsor the CCFA, I bet they would change their tune real quick...
07-12-2011, 10:26 PM   #5
Join Date: Dec 2010
Very enlightening, thanks 'VeryScared'...they have just lost my support (they certainly don't need it if they are a front group for big pharmaceutical corps)...I am guessing that this survey was more about effective marketing than finding a cure.....enough to make you sick

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