Thanks, re Celiac Info

[Guest guest]

Just wanted to say thanks to everyone who had helpful hints re: testing

for celiac.

Pardon me if things are a trifle shattered on this end over the next

week. I saw the gastro last Monday, and while he SEEMED nice, it's become

patently clear that, in common with almost every gastro we on this list

are familiar with, everything I said about my special needs went in one

ear and out the other.

The instructions I have received for the clean-out are impossible for me

to carry out, and I am going to have to try to see either my PCP or the

gastro first thing tomorrow.

I am forbidden to take the meds which prevent muscle spasm in my back

because they are oily and will stimulate the liver and pancreas to

produce their usual digestive juices which will, in turn, obscure the

view.

If I could take a dose on Thursday, before the clean-out starts, I might

be able to make it through until after the test on Friday, but that is

not permitted according to the written orders. Apparently he thinks that

because the spasms are controlled with nutrition and supplements, they

aren't very bad, and I can just endure the pain for 48 hours. No

prescription med which has worked in the past is safe for me to take

prior to having anesthesia.

The last time I went without the supplements was for my cancer surgery --

and my surgeon knew, and compensated in the meds. The time before that, I

landed in the hospital, in the emergency room because I could not stop

throwing up because of the pain.

The gastro doesn't care. He basically shrugged, and said, " Well, you

have to do what you have to do, but if you don't follow my directions,

I'll come out and tell you it was a bad test. " In other words, I'll

go through the clean-out and the pain and have no useful

information.

Of course, his instructions also say that if I start throwing up during

the prep, I should call the doctor immediately. Problem is, I know in

advance, that without my supplements, I will be throwing up before

things even get started.

Harry says I should just cancel the test. I don't feel I can do that,

because the PCP has hinted darkly that my recent blood tests indicate

that I am bleeding internally, and that it may mean that the cancer has

spread to the colon. If it has, I need to know, so that steps can be

taken.

I finally got to go over the instructions Christmas Eve. Great present,

huh? And I've spent the whole holiday weekend in misery because of

them.

Oh, and did I mention that I'm not allowed to bring my Bipap for the

procedure? I won't need it, says the gastro, because if I stop breathing

during the procedure, they'll just shake me and wake me up. Patently

obvious he knows nothing about sleep apnea, let alone complex sleep

apnea.

I know there's not much ya'll can do... and the test is essential. But

I'm not happy, and I am upset because of the total failure to take into

account special needs.

I hate " one size fits all " medicine.

Apologies for dumping on you all.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund