Re: Colonoscopy, was: Re: Seacure

[Guest guest]

Hi Marilyn, just a reply on the Celiac testing, I think there is a genetic test that would require blood test. I don't think you have to go on a gluten filled diet with it. It could at least tell you if you carry the gene?HTH,Belle

How come you need a colonoscopy?

Maybe this time you could use a less harsh clean out prep like the pills

Mara talks about or the drink Sheila uses?

I have the prescribed drink the doctor wants me to use, which I think is

the same one Sheila uses. I have to have a colonoscopy because I'm over

50 and I've never had one.

Another consideration is that the first place cancer is likely to spread

from the uterus, if it's going to spread, is the colon, so it's wise to

have that checked out and make sure there are no polyps or anything in

the first year.

However, I'm very upset with my PCP because he looked at my blood work

and said that the elevated RDW meant that I was bleeding internally

somewhere because my red blood cells were turning over too quickly.

RDW is apparently partially the turnover rate for red blood cells and a

measure of the differences in sizes between the cells

themselves.

http://en.wikipedia .org/wiki/ RDW

I asked him if the issue could be that I am still recovering from the

cancer surgery in April. (My surgeon had two units of blood standing by

for me; I needed neither of them.) He said no.

I asked him if it could be related to my sleep apnea, which, at the time

of the blood draw, had been under treatment for about 3 weeks, and under

effective treatment about 2 weeks. It seemed reasonable to me that the

red blood cells, which are the carriers of oxygen to our cells should be

affected by the repeated desaturations inherent in the disorder, and that

if I had been under effective treatment less than one full turnover of

the cells (about 90 days), that it was reasonable that cells generated

since treatment began might show different characteristics from those

generated under apneic conditions. He said absolutely not.

I have been researching, and have found some studies which indicate that

apnea does, in fact affect blood composition, including the plasma

itself, but have not yet found anything specifically relating to raised

or lowered hemocrit, raised or lowered RDW and apnea.

Now, he may be right about the bleeding issue, but I feel he is wrong to

dismiss the effects on the system of losing several units of blood in

surgery a few months back. He discounts, if he is even aware, that I had

drains in my gut, draining up to 70cc of plasma 2-3 times a day for up to

six weeks after the surgery.

Many medical people think you can be fully recovered from surgery in six

weeks. That's not correct -- in fact, the lymphedema specialist I saw

said that for the type of surgery I had, because the body is adjusting to

new hormone levels, new methods of circulation (due to the removal of

lymph nodes) and other factors, it can take a full year or more to reach

a new normal.

Now I've added apnea treatment, and my body has to again recalibrate

everything. In point of fact, gut discomfort and the area of numbness in

relation to my 24" scar has decreased significantly since effective

apnea treatment began.

I would probably take the issue about "bleeding" more seriously

if it weren't for the fact that the RDW was high last year, and my

absolute neutrophils were low -- and the cancer was discovered about 2

months later. (NOT by this doctor -- I self-diagnosed a problem and took

myself to a gynecologist. This doctor was unconcerned about those levels

last year.) This year, the neutrophils are normal, but the RDW is still

elevated, and suddenly, I'm bleeding somewhere, but the fact that I lost

significant blood in surgery this year AND that my apnea is finally

getting treated is irrelevant is not something I swallow readily.

But in the course of researching, I found something interesting:

http://tinyurl. com/7mzkch

Conclusions : In patients in whom there is a strong clinical suspicion

of coeliac disease, an elevated RDW despite normal haemoglobin

concentration may be a reliable predictor of the disease.

I have never been tested for celiac, and I won't be because the

current tests require you to eat gluten for 3-4 weeks before the test.

I've been gluten-free, starch-free, and refined sugar-free, aka SCD, for

over 7 years... and I see no reason to make myself deathly ill to satisfy

some test. (My niece, who is confirmed celiac, did go back on gluten for

the test and was vilely ill.)

The thing which distresses me is that he tells me I'm bleeding

internally, and then adds, "Of course, it may only be polyps,"

with an implication that it's something much worse -- so I've pretty well

had my entire holiday season destroyed by worry about the cancer. And not

getting ANY of the specialists to be willing to move quickly on the

issue! I got exactly 50 minutes of sleep last night (as logged by my

Bipap Auto SV) and had 2 apneas (stopped breathing) and 5 hypopneas

(breathing dropped to 50% or less) in that time. That's the worst rating

(AHI) I've had since I got my pressures normalized. Stress will do

that.

After finding the celiac link, I got the previous set of blood work (from

2004, as I didn't have any for 2005, after Katrina, or in 2006) and low

and be hold -- the RDW was elevated to the same level!

So now I'm ticked. I've had this RDW issue for FOUR years and it wasn't a

big thing.... but now he can't find anything else since my blood sugar is

holding steady, and I lowered my cholesterol (and someone else found the

cancer and the sleep apnea), so suddenly, it's a Big Deal.

My idea of fun does not include a colonoscopy clean out on New Year's

Day, but it was that or wait for an opening in March, and stress about it

the whole time. I suspect the reason the slot was open is because no one

else wants to do a clean-out New Year's Day, either!

I need to do one too but I would

like to go to Israel in Feb and I am scared I won't be able to as

procedure will set me back.. Thinking I might feel better in the next 5-6

weeks so I can go see my family come home and do it

then.

I can see your point. For me, though, it's better to get it over with NOW

so that I don't stress out for the next two months. The stress wasn't

doing either my blood pressure or my AHI any good. Plus, Harry has

vacation all this week and all next week, so he'll be able to be with me

and not have to take extra time off work.

—

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]

I think there is a genetic test that would require blood test. I don't think you have to go on a gluten filled diet with it. It could at least tell you if you carry the gene?

I had that genetic test and it told me I didn't carry the gene but some people can have the disease without the genetic defect. That information combined with my doctor's comments on the good condition of my ville (sp?) during the colonoscopy I was able to confirm that I don't have celiac. I had a blood test once too and that was negative, although I've heard those results are never reliable.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: Tapering Prednisone for PG

To: BTVC-SCD Sent: Tuesday, December 23, 2008 5:58:21 PMSubject: Re: Colonoscopy, was: Re: Seacure

Hi Marilyn, just a reply on the Celiac testing, I think there is a genetic test that would require blood test. I don't think you have to go on a gluten filled diet with it. It could at least tell you if you carry the gene?HTH,Belle

How come you need a colonoscopy? Maybe this time you could use a less harsh clean out prep like the pills Mara talks about or the drink Sheila uses?I have the prescribed drink the doctor wants me to use, which I think is the same one Sheila uses. I have to have a colonoscopy because I'm over 50 and I've never had one.Another consideration is that the first place cancer is likely to spread from the uterus, if it's going to spread, is the colon, so it's wise to have that checked out and make sure there are no polyps or anything in the first year.However, I'm very upset with my PCP because he looked at my blood work and said that the elevated RDW meant that I was bleeding internally somewhere because my red blood cells were turning over too quickly. RDW is apparently partially the turnover rate for red blood cells and a measure of the differences in sizes between the cells

themselves.http://en.wikipedia .org/wiki/ RDWI asked him if the issue could be that I am still recovering from the cancer surgery in April. (My surgeon had two units of blood standing by for me; I needed neither of them.) He said no.I asked him if it could be related to my sleep apnea, which, at the time of the blood draw, had been under treatment for about 3 weeks, and under effective treatment about 2 weeks. It seemed reasonable to me that the red blood cells, which are the carriers of oxygen to our cells should be affected by the repeated desaturations inherent in the disorder, and that if I had been under effective treatment less than one full turnover of the cells (about 90 days), that it was reasonable that cells generated since treatment began might show different characteristics from those generated under apneic conditions. He said absolutely

not.I have been researching, and have found some studies which indicate that apnea does, in fact affect blood composition, including the plasma itself, but have not yet found anything specifically relating to raised or lowered hemocrit, raised or lowered RDW and apnea. Now, he may be right about the bleeding issue, but I feel he is wrong to dismiss the effects on the system of losing several units of blood in surgery a few months back. He discounts, if he is even aware, that I had drains in my gut, draining up to 70cc of plasma 2-3 times a day for up to six weeks after the surgery. Many medical people think you can be fully recovered from surgery in six weeks. That's not correct -- in fact, the lymphedema specialist I saw said that for the type of surgery I had, because the body is adjusting to new hormone levels, new methods of circulation (due to the removal of lymph nodes) and other factors, it can take a full year or more to

reach a new normal. Now I've added apnea treatment, and my body has to again recalibrate everything. In point of fact, gut discomfort and the area of numbness in relation to my 24" scar has decreased significantly since effective apnea treatment began. I would probably take the issue about "bleeding" more seriously if it weren't for the fact that the RDW was high last year, and my absolute neutrophils were low -- and the cancer was discovered about 2 months later. (NOT by this doctor -- I self-diagnosed a problem and took myself to a gynecologist. This doctor was unconcerned about those levels last year.) This year, the neutrophils are normal, but the RDW is still elevated, and suddenly, I'm bleeding somewhere, but the fact that I lost significant blood in surgery this year AND that my apnea is finally getting treated is irrelevant is not something I swallow readily. But in the course of researching, I found something

interesting:http://tinyurl. com/7mzkchConclusions : In patients in whom there is a strong clinical suspicion of coeliac disease, an elevated RDW despite normal haemoglobin concentration may be a reliable predictor of the disease.I have never been tested for celiac, and I won't be because the current tests require you to eat gluten for 3-4 weeks before the test. I've been gluten-free, starch-free, and refined sugar-free, aka SCD, for over 7 years... and I see no reason to make myself deathly ill to satisfy some test. (My niece, who is confirmed celiac, did go back on gluten for the test and was vilely ill.) The thing which distresses me is that he tells me I'm bleeding internally, and then adds, "Of course, it may only be polyps," with an implication that it's something much worse -- so I've pretty well had my entire holiday season destroyed by worry

about the cancer. And not getting ANY of the specialists to be willing to move quickly on the issue! I got exactly 50 minutes of sleep last night (as logged by my Bipap Auto SV) and had 2 apneas (stopped breathing) and 5 hypopneas (breathing dropped to 50% or less) in that time. That's the worst rating (AHI) I've had since I got my pressures normalized. Stress will do that.After finding the celiac link, I got the previous set of blood work (from 2004, as I didn't have any for 2005, after Katrina, or in 2006) and low and be hold -- the RDW was elevated to the same level!So now I'm ticked. I've had this RDW issue for FOUR years and it wasn't a big thing.... but now he can't find anything else since my blood sugar is holding steady, and I lowered my cholesterol (and someone else found the cancer and the sleep apnea), so suddenly, it's a Big Deal.My idea of fun does not include a colonoscopy clean out on New Year's Day, but it was

that or wait for an opening in March, and stress about it the whole time. I suspect the reason the slot was open is because no one else wants to do a clean-out New Year's Day, either!

I need to do one too but I would like to go to Israel in Feb and I am scared I won't be able to as procedure will set me back.. Thinking I might feel better in the next 5-6 weeks so I can go see my family come home and do it then.I can see your point. For me, though, it's better to get it over with NOW so that I don't stress out for the next two months. The stress wasn't doing either my blood pressure or my AHI any good. Plus, Harry has vacation all this week and all next week, so he'll be able to be with me and not have to take extra time off work.

— 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 10:58 AM 12/23/2008, you wrote:

just a reply on the Celiac

testing, I think there is a genetic test that would require blood test. I

don't think you have to go on a gluten filled diet with it. It could at

least tell you if you carry the gene?

I do not know -- I may ask the next time I see the gastro after the

colonoscopy. (The next time I see him will be for that, and I don't think

that is the time to be asking about things like that. I'm having enough

trouble with the fact that a patient with apnea should ALWAYS use their

xPAP machine for any kind of sedation, and the gastro doesn't think I

need it for something as short as a colonoscopy.

—

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 12:01 PM 12/23/2008, you wrote:

I think there is a genetic test

that would require blood test. I don't think you have to go on a gluten

filled diet with it. It could at least tell you if you carry the

gene?

Thanks for the info... you're the second person to mention it. A close

relative decided to be tested, in part because she was getting the

dickens from her mother-in-law, who insisted she had made up all this

about a special diet in order to get attention.

She was positive on something like three of the four factors, so the

probability is that I do have celiac. But I'm not willing to go off SCD

in order to find out.

—

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]

Did he agree to sedate you? First hand experience says that you may

definitely want to be sedated for that. If you are inflamed or even

if you aren't--you may probably definitely want sedation.

Just my opinion on it.

Debbie 39 cd