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Well, I got tired of running to the ROOM 15 times on Monday so I thought I'm putting myself back on the entocort and so I did!!! sigh..scary to do that....next day no diarrhea and 2 little normans!! same yesterday.....menwhile I'm trying to find a GI doc in the area....writing to Sally and she gave me her Doc in Eugene and just heard from Umber...her doc is closer but has no appt. till June, but I am on the cancellation list....yesterday I signed the release form for my records to be mailed to me and since only 4 pages it shouldn't take long. I have 70 capsules of entocort so will see if one a day will do it, along with the GF diet....easing out of dairy...hard to give up that little dribble of half and half in my coffee, but should be ready any day now!! LOL!! A member of the c-diff group messaged me with the name of a Doc who teaches at the U of Washington who is cutting edge c-diff Tx.....but she hasn't answered my e-mail so I figure she must be out of town.....she has a "favorite" doc in Portland who is especially good with c-diff but have no idea of who that may be...so I decided the the LC is the most pressing thing to be treating anyway and so called Umbers' doc....
off now to help darling daughter with her new house....cleaning cupboards, painting, etc.
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
We're all ultimately responsible for our own health, so to taking charge of your health, when your doc wouldn't. Doctors are paid professional "advisers", to whom we turn for expert advice, but when their advice is contrary to our best interest, then it's our duty to become "informed", and make our decisions accordingly.
Best of luck in locating a new GI doc who is willing to work with you.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Good for you, I think the old saying 'doctor knows best' is not always the case, at times we do have to take responsibility for our health and ignore what they say.
Hi Sunny,
I agree you did the right thing too....you know your body better than anyone, and it appears you are right!
Good luck in finding another GI doc soon!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Sunny!
I would have done exactly what you chose to do..
At first my GI said "NO" to the Entocort, so taking matters into my own hands, I went into see my PCP and she was so aware of what I was dealing with. She wrote me out the script for the Entocort..
Next GI appt. I was asked for names of any meds that I was on.
Gave them my list and then said, "And Entocort"..... GI has been refilling the script every 6 months for me!!!!!
Hope to hear that you are doing better..
Love
Dee~~~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
Thanx everyone....every day is getting better now that i am back on the entocort....seems as if 3mg is doing the trick ...so far so good.
I asked for my records to be sent and when they arrived yesterday, they are a bit incomplete....none of the meds for c-diff are charted nor is the cholestid, and the 3rd c-diff test and comments fro ID doc are not in there either....but at least the colonsocopy repports are in there.....sheeesh!!
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
sigh..scary to do that....next day no diarrhea and 2 little normans!! same yesterday.....menwhile I'm trying to find a GI doc in the area....writing to Sally and she gave me her Doc in Eugene and just heard from Umber...her doc is closer but has no appt. till June, but I am on the cancellation list....yesterday I signed the release form for my records to be mailed to me and since only 4 pages it shouldn't take long. I have 70 capsules of entocort so will see if one a day will do it, along with the GF diet....easing out of dairy...hard to give up that little dribble of half and half in my coffee, but should be ready any day now!! LOL!! 
A member of the c-diff group messaged me with the name of a Doc who teaches at the U of Washington who is cutting edge c-diff Tx.....but she hasn't answered my e-mail so I figure she must be out of town.....she has a "favorite" doc in Portland who is especially good with c-diff but have no idea of who that may be...so I decided the the LC is the most pressing thing to be treating anyway and so called Umbers' doc....
to taking charge of your health, when your doc wouldn't. Doctors are paid professional "advisers", to whom we turn for expert advice, but when their advice is contrary to our best interest, then it's our duty to become "informed", and make our decisions accordingly.
