Re: Thanks, re Celiac Info

[Guest guest]

Marilyn Marilyn,

I get so frustrated learning how we all get treated and thrown around

as if we don't know our own bodies, our state of health. ARGH!!!

I am so sorry you have to go through this. If Docs would just

understand the stress they put patients under.

Maybe you need to look for a new GI someone on the SCD pals list?

Perhaps it will be covered through insurance?

I don't like it that he doesn't understand your needs- I mean maybe

there would be some way to prep you supplement wise.. Doesn't seem

like a doc that thinks outside of the box one bit or is willing to

work with you...

My mom had a procedure and her surgeon was in great communication with

her PCP (which is also an integrative doc)

GI's are a miserable breed.

Jodi

SCD 15 months

Crohn's/Colitis

[Guest guest]

Jodi,

I get very frustrated, too. I think I frightened my PCP this morning,

screaming and cursing at him. Yeah, I know -- I stay so calm on the

lists, for the most part, that people can't really imagine we losing

it... but the fear of anesthesia, and the fear of going off this

life-saving diet (on which I made so DARN many mistakes in the first

year!) will do it every time.

<wry grin> This IS a new gastro -- I don't have one, because I

fired the one in 2001 who told me food had nothing to do with gut issues,

and hinted darkly that the high liver enzyme levels at the time of my

gall bladder surgery indicated liver cancer. Since the liver enzyme

levels returned to normal within six weeks of starting SCD, I felt no

qualms about kicking him out the door. SCD has healed 25 years of gut

spasm, urgency, and soft, mushy stool with diarrhea.

I had to find a gastro in order to have this colonoscopy. I doubt, unless

there's something serious wrong, that I'll go back to him -- and maybe

not then.

My discussion of those needs apparently went in one ear and out the

other, with no orders given to the office staff to accommodate them. I'll

be mentioning it to both my gynecologist and my oncologist -- both of

whom were wonderful in accommodating my needs for the cancer surgery. The

oncologist was completely cool about it -- I bribed her with apple-pecan

muffins!

I agree. GIs are a miserable breed. Must come from the fact that they

spend all their time looking up people's rears. No, wait... that's

proctologists. I think they're related.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Marilyn,I'm so sorry. My heart goes out to you. You've been through so much this past year and it just keeps coming. There is a special place in 'you know where' for these doctors who treat people so badly and have such a lack of respect for their patient's needs. It is your body, you are the one that has lived in it 24/7 for a few years now yet he is so arrogant that he thinks he knows it better than you. I don't understand why someone would become a doctor if they didn't want to help people. You are in my thoughts and prayers and I hope all goes well with your prep and procedure. And I hope that 2009 holds only good things for you!Kim H.

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

[Guest guest]

Marilyn,

I am appalled, but not surprised, at the #$^%# & *!!!@#^^ & attitude of

the GI you saw. Is there anyone else you can go to? I'm thinking of

you and praying you find the answers you need to move forward. You

are such a fortress of strength for all of us here on this list and I

hope we can all be there for you.

Peace.

[Guest guest]

At 02:53 PM 12/31/2008, you wrote:

I'm so sorry. My heart goes out

to you. You've been through so much this past year and it just keeps

coming. There is a special place in 'you know where' for these doctors

who treat people so badly and have such a lack of respect for their

patient's needs. It is your body, you are the one that has lived in it

24/7 for a few years now yet he is so arrogant that he thinks he knows it

better than you. I don't understand why someone would become a doctor if

they didn't want to help people.

You are in my thoughts and prayers and I hope all goes well with your

prep and procedure. And I hope that 2009 holds only good things for

you!

Kim,

Thanks for the kind words. I'm on Day Two of my fast for this procedure.

I was able to talk to the endoscopy nurse on TUesday, and she answered a

number of my questions -- and helped me find alternatives to the

cookie-cutter one-size-fits-all pre-printed directions. If that d@mned

office worker would have referred me to her when I said I had questions

instead of throwing me out of the office, I would have been spared a week

of severe stress and strain.

For instance, the legal stool softeners my oncologist prescribed while I

was on narcotics after the surgery are just fine for this procedure, too,

and I've taken some of those instead of the bisacodyl which contained not

one, but FOUR illegals.

She explained exactly what would transpire during the procedure, and when

I said I had trouble detoxing from demerol, said she would make a note to

use a different drug which has a much shorter detox rate on it.

She also said to be sure and bring my CPAP, and to make sure that my

husband knew how to put it on me. She did not think I would need it

during the actual procedure, but I should have it as soon as the

procedure was finished, and until I was awake enough to go home. And, of

course, I should use it at home any time I was resting. (Which I do

anyway.)

Now, will someone tell me why that <bleeping> scheduler couldn't

have let me take care of my questions before they ruined my

holiday?

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

At 09:36 AM 1/1/2009, you wrote:

I am appalled, but not

surprised, at the #$^%# & *!!!@#^^ & attitude of

the GI you saw. Is there anyone else you can go to? I'm thinking of

you and praying you find the answers you need to move forward. You

are such a fortress of strength for all of us here on this list and

I

hope we can all be there for you.

,

I was appalled, too, but not surprised -- I have seen others reports on

gastroenterologists and their attitudes for more years than I want to

think about.

Regrettably, I would have had to wait until March or April for an

appointment with anyone else, and my PCP insisted that it was

" serious, " though " It MAY only be

polyps.... "

Given that the first place cancer is likely to spread from the uterus is

to the colon, I wasn't willing to wait. I've begun the clean-out for the

colonoscopy, which is scheduled for 7:30 AM tomorrow, Friday, 2 January.

If you're awake, all prayers gratefully accepted.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Marilyn,

You have my sincere good wishes and prayers as you undergo your colonoscopy. I am sending you all positive vibes and know that even though it is a pain in the a** ( pardon the pun), you are doing something positive in a prevention way. It's like the stupid mammogram....we all dread it, hate having to go, but early detection of anything or nothing is better than the alternative.

I think you should do what is comfortable for you and bring your CPAP just in case and after all is said and done, you can politely tell the GI that you will do it YOUR way next time, that he has to meet you at least halfway in your needs. Sometimes, after you have established a relationship with some of the more arrogant practitioners, they soften up a bit.

God Bless and best of luck.

Thinking of you,

Terry

Re: Re: Thanks, re Celiac Info

At 09:36 AM 1/1/2009, you wrote:

I am appalled, but not surprised, at the #$^%# & *!!!@#^^ & attitude ofthe GI you saw. Is there anyone else you can go to? I'm thinking ofyou and praying you find the answers you need to move forward. Youare such a fortress of strength for all of us here on this list and Ihope we can all be there for you.,I was appalled, too, but not surprised -- I have seen others reports on gastroenterologists and their attitudes for more years than I want to think about.Regrettably, I would have had to wait until March or April for an appointment with anyone else, and my PCP insisted that it was "serious," though "It MAY only be polyps...."Given that the first place cancer is likely to spread from the uterus is to the colon, I wasn't willing to wait. I've begun the clean-out for the colonoscopy, which is scheduled for 7:30 AM tomorrow, Friday, 2 January. If you're awake, all prayers gratefully accepted.

- Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund

[Guest guest]

Oh Marilyn, I wrote to you before I read this post. I'm glad you found someone to help you there. You have to treat the doctor as you would anyplace where you don't get satisfaction; ask for the supervisor. An office clerk deals with 20 wackos a day and does not know you are a woman of intelligence and reason. And I'm glad she said to bring the CPAP--best of luck again.

Terry

Re: Thanks, re Celiac Info

At 02:53 PM 12/31/2008, you wrote:

I'm so sorry. My heart goes out to you. You've been through so much this past year and it just keeps coming. There is a special place in 'you know where' for these doctors who treat people so badly and have such a lack of respect for their patient's needs. It is your body, you are the one that has lived in it 24/7 for a few years now yet he is so arrogant that he thinks he knows it better than you. I don't understand why someone would become a doctor if they didn't want to help people. You are in my thoughts and prayers and I hope all goes well with your prep and procedure. And I hope that 2009 holds only good things for you!Kim,Thanks for the kind words. I'm on Day Two of my fast for this procedure. I was able to talk to the endoscopy nurse on TUesday, and she answered a number of my questions -- and helped me find alternatives to the cookie-cutter one-size-fits-all pre-printed directions. If that d@mned office worker would have referred me to her when I said I had questions instead of throwing me out of the office, I would have been spared a week of severe stress and strain.For instance, the legal stool softeners my oncologist prescribed while I was on narcotics after the surgery are just fine for this procedure, too, and I've taken some of those instead of the bisacodyl which contained not one, but FOUR illegals.She explained exactly what would transpire during the procedure, and when I said I had trouble detoxing from demerol, said she would make a note to use a different drug which has a much shorter detox rate on it. She also said to be sure and bring my CPAP, and to make sure that my husband knew how to put it on me. She did not think I would need it during the actual procedure, but I should have it as soon as the procedure was finished, and until I was awake enough to go home. And, of course, I should use it at home any time I was resting. (Which I do anyway.)Now, will someone tell me why that <bleeping> scheduler couldn't have let me take care of my questions before they ruined my holiday?

- Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund

[Guest guest]

Hey Marilyn..

This makes me so angry that no one was helpful earlier so you would of

been spared of the stress and worry!! As it is these things are

difficult.

It's ironic though since they say " Doctors make the worst patients "

If this is the case than where does their compassion go? Obviously,

some of these old farts also have to do clean outs and who knows what

else... these people have loved ones. ARGH!

Anyway, I will be happy when you will be through with all of this at

home.. relaxing.. Getting back into the swing of things, writing,

cooking.. test cooking.. Having fun with your fur kids.. And all of

this will be behind you.

Big hugs and of course many thoughts a prayers being sent your way..

Thank you for all of your help Marilyn.. This sure is a giving

community- you have all given me so much. Thank you.

Jodi

SCD 15 months

Crohn's/Colitis

> Now, will someone tell me why that <bleeping>

> scheduler couldn't have let me take care of my

> questions before they ruined my holiday?

[Guest guest]

You have my sincere good wishes

and prayers as you undergo your colonoscopy. I am sending you all

positive vibes and know that even though it is a pain in the a** ( pardon

the pun), you are doing something positive in a prevention way. It's like

the stupid mammogram....we all dread it, hate having to go, but early

detection of anything or nothing is better than the alternative.

I think you should do what is comfortable for you and bring your CPAP

just in case and after all is said and done, you can politely tell the GI

that you will do it YOUR way next time, that he has to meet you at least

halfway in your needs. Sometimes, after you have established a

relationship with some of the more arrogant practitioners, they soften up

a bit. God Bless and best of luck.

Thinking of you,

Terry,

All the good thoughts and prayers are deeply appreciated. Ironically, the

test itself wasn't that difficult -- it was getting the medical personnel

to understand that my special needs can't simply be set aside because

it's inconvenient for them. (Geesh, I wish I could set them aside!

They're darned inconvenient for me!)

I did bring my Bipap. but fortunately, did not need it since they

modified the meds they gave me. I believe they used a combination of

Versed and fentanyl (sp?), and it wore off quickly enough that I could

navigate on my own. (I saw a woman whose procedure was before mine, and

she was having to be helped to the restroom.)

The most difficult issue was doing without the nutriceuticals I use for

muscle-spasm relief. The muscle spasms are courtesy of a back injury in

1982. They are not technically related to my gut issues, but if they

occur, they pinch the nerves to my gut, and I end up throwing up

continuously. One nutriceutical was forbidden because it's a dark green

and would interfere with " the view, " and the others were

forbidden because they were oily.

The problem was that although I was forbidden these, no provision was

made for dealing with the inevitable pain which resulted from their

removal. The PCP, after my screaming fit, prescribed Lidocaine patches...

which worked, in part, for about 6 hours. Except that I had another four

hours to go before receiving the sedation and muscle relaxants for the

procedure. When my husband called the gastro at 4am because I was in so

much pain and dealing with nausea, the gastro had no suggestions except

to bring my meds with me so I could take them after the procedure! (Which

I did.)

I came home, and after I'd gotten something to eat, answered a few SCD

questions, and then crawled into bed with my Bipap for about a four hour

nap.

WRT mammograms... I still have mixed feelings about exposing sensitive

breast tissue to X-rays every year. Prevention and/or early detection is

a good thing, but the reviews I have seen can be mixed. If they'd find a

less dangerous way of scanning, then yes, definitely. Now Pap smears are

another issue -- if I'd had those regularly (VERY long story as to why I

didn't), then the cellular changes which indicated forthcoming cancer

might have been caught early. I'm all in favor of pap smears.

Still, the important thing is that the results were all so good!

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

That's infuriating. Seriously, if you don't want to help people, do not choose a career in healthcare!

I am so very glad that it all worked out for you though and that they didn't see any signs of anything other than a healthy gut. YAY!!!!

Kim H.

Kim,Thanks for the kind words. I'm on Day Two of my fast for this procedure. I was able to talk to the endoscopy nurse on TUesday, and she answered a number of my questions -- and helped me find alternatives to the cookie-cutter one-size-fits- all pre-printed directions. If that d@mned office worker would have referred me to her when I said I had questions instead of throwing me out of the office, I would have been spared a week of severe stress and strain.For instance, the legal stool softeners my oncologist prescribed while I was on narcotics after the surgery are just fine for this procedure, too, and I've taken some of those instead of the bisacodyl which contained not one, but FOUR illegals.She explained exactly what would transpire during the procedure, and when I said I had trouble detoxing from demerol, said she would make a note to use a different drug which has a much shorter detox rate on it.

She also said to be sure and bring my CPAP, and to make sure that my husband knew how to put it on me. She did not think I would need it during the actual procedure, but I should have it as soon as the procedure was finished, and until I was awake enough to go home. And, of course, I should use it at home any time I was resting. (Which I do anyway.)Now, will someone tell me why that <bleeping> scheduler couldn't have let me take care of my questions before they ruined my holiday?

— Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund

[Guest guest]

At 09:32 AM 1/6/2009, you wrote:

That's infuriating. Seriously,

if you don't want to help people, do not choose a career in

healthcare!

I am so very glad that it all worked out for you though and that they

didn't see any signs of anything other than a healthy gut.

YAY!!!!

Kim,

Amen to that! Not wanting to help people equals " you shouldn't work

in health care. "

It worked out, but it was a real zoo, especially when my back started

locking up at 4a just the way I told them it would -- and they had

nothing to suggest.

It's very gratifying to know there were no signs of anything but healthy

gut! (Now I just have to worry about what the PCP will come up with

next.)

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

It worked out, but it was a real zoo, especially when my back started

locking up at 4a just the way I told them it would -- and they had

nothing to suggest.That's horrible! Their purpose is *supposed* to be to ease pain, not cause more!

(Now I just have to worry about what the PCP will come up with

next.)They gotta make their money somehow....Kim H.

[Guest guest]

Kim,

That's horrible! Their purpose

is *supposed* to be to ease pain, not cause more!

Yes. Unfortunately, neither the gastro nor the PCP really believed that

my back would lock up. The PCP had given me some lidoderm patches which

helped, but it was still going under. I said " To bleep with

this, " and took some bromelain, which is an anti-inflammatory on an

empty stomach, and it, along with pantothenic acid and taurine eased

things enough that I could hang on until they shot me full of the meds

for the procedure.

And unfortunately, I'm having trouble getting my back on an even keel.

I'm not even sure if I'll be able to make our trip to Atlanta this

weekend for the annual music conference I enjoy going to so

much.

My gut? Well, I popped some s. boulardii and some Lyo-San on walking out

of the place (along with my nutriceutical for my back) and the gut has

recovered just fine from all the insults.

(Now I just have to worry about

what the PCP will come up with next.)

They gotta make their money somehow....

As far as I'm concerned, they can make it experimenting on someone else.

At least I know my gut is healthy!

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

And unfortunately, I'm having trouble getting my back on an even keel.

I'm not even sure if I'll be able to make our trip to Atlanta this

weekend for the annual music conference I enjoy going to so

much.That stinks! I hope things get back to normal for you before the weekend.

My gut? Well, I popped some s. boulardii and some Lyo-San on walking out

of the place (along with my nutriceutical for my back) and the gut has

recovered just fine from all the insults. Well that's great!!

As far as I'm concerned, they can make it experimenting on someone else.

At least I know my gut is healthy!That's for sure!Kim H._._,___