I can't get help for EN

[Guest guest]

I am 74, have Crohn's and EN. Crohn's does not manifest itself like normal

Crohn's. This all started 30 years ago when I kept getting EN and the

underlying cause could not be determined. After two years of EN flares, I

finally went to U of M for outpatient treatment. U of M has treated me ever

since. Beginning in the 90s when entocort became available and we had decent

prescription ins. they prescribed that drug and it worked well along with

sulfasalazine that I take to this day. After that prednisone was prescribed.

At 74, I do not want to drive 70 plus miles to U of M anymore so I solicited the

services of my primary care internist and a GI specialist. Previously, I was

prescribed 20 mg for 10 days, then 17.5 for 10 days all the way down to 2.5. My

local internist would only give me 20 mg for 5 days, then 10 mg for 5 days, then

5 mg for 5 days then off. That did not help at all.

GI doctor did a colonoscopy about 6 months ago and said no sign of Crohn's. Now

I have EN again with Crohn's cramps. Saw him yesterday and he said EN would go

away on it's own and was mild to come back in 2 months which amounts to January

because he is not here for the whole month of December. He said he did not

prescribe prednisone because it would thin my bones and the EN was mild to

moderate. U of M had prescribed prednisone without hesitation.

Called internist and told her the 15 day prednisone did not work. She then

prescribed entocort for one month at $900 for the month. I cannot afford that.

This EN will not go away without prednisone for a longer time than 15 days. I

would truely like to find a GI doctor in my area that will treat the EN. Seems

like too many doctors are reluctant to prescribe what is necessary because it

seems to me they are afraid of repurcusions.

Any advise of suggestions will be appreciated.

Also this EN will not go away on it's own. I learned that lesson 30 years ago.

Thanks

sampson1@...