Re: Consider joining IFFGD

From: jetstamp (jetstamp@yahoo.com)
Fri Apr 10 19:01:20 2009


At Tue, 7 Apr 2009, IAS Admin wrote: >
>From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of
>kelly murray
>Sent: Monday, April 06, 2009 10:45 PM
>To: adhesions-request@adhesions.org
>Subject: Re: Consider joining IFFGD
>
>I went to Gastrointestinal doctors before I got diagnosed with adhesions
and >was told that I had IBS, Chrones Disease,  Functional Pain, and some other
>Gut issue.  They had no idea but gave me these diagnosis to make me feel
>better.  Personally, I would not go to a Gast. Dr. as I don't think they
>really deal with adhesions.  I think they deal more with the inside and not
>the outside of the intestines. They can't look "outside" of the box.  Not
>that some aren't good at what they do...my husband had his colon removed
>from Ulcerative Colitus. 
>Kelly,

I agree that most GI doctors are pretty lousy at considering issues outside of the GI tract that impact its function- generally, if they don't find polyps during a colonoscopy or blood in the sample test, they consider their jobs done and they are through with you as a patient and will not refer you to someone who maybe COULD look into external factors. They can't wait to diagnose IBS and to preach using fiber supplements- although it does sound now like some of them are SLOWLY realizing that treatments that work for the general population do not work for those of us with no real diagnosed cause- like IBS, and as some here have said, sometimes they actually make things worse even after a reasonable break-in period to adjust to fiber usage.

And I love the way they contradict themselves when using this vague, catch-all term. On the one hand, they act like they know what will help it (usually fiber or low-carb diets), and insist that your pain can't be as bad as you claim, while on the other hand, they say 'We don't know what causes IBS.' Excuse me, but if you don't know what is causing my 'so-called' IBS, how can you know what will fix it or how can you know how bad my pain is or isn't?

But that's why I like IFFGD- I don't think they only deal with GI doctors. They are a type of patient advocate organization and they work to increase awareness of the severity of these conditions and press for more research to find the various causes and hopefully effective treatments for them. They also have patient surveys on their site and publish the results and they show the results to doctors (not just gastros) elected representatives, etc. to give people like us a voice. They currently have one about patients un-met needs- I think it's worth filling out if you get a chance.

Mainly, I'm hoping to get the issue of adhesions more widely recognized and acknowleged by the medical profession as one more cause of GI issues- the first step is to get adhesions added to the list of GI problems right along with things like GERD, IBS, IBD- and eventually see adhesions as a 'searchable' condition when looking for the appropriate doctor- regardless of what type of doctor that would be- internal medicine or whatever.


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