Re: Hi All, new here and undiagnosed

[Guest guest]

Thank you all so much for your responses. It is very helpful to hear your

stories and get advice from those who REALLY know what this is like. The

doctors don't seem to know much.

I have a couple of more questions

When my trouble first started 18 months ago, I had a Barium Swallow, but the

tell tale Achalasia birds beak was not there. Does that rule out Achalasia? Or

can that happen in the early stages?

Also, does anyone here have a Hiatal Hernia with Achalasia?

Thanks so much!!

Margie

[Guest guest]

Hi Margie, yes I had a Hiatus Hernia too! That got fixed when I had my HM 3

months ago. The HM didn't work!

>

> Thank you all so much for your responses. It is very helpful to hear your

stories and get advice from those who REALLY know what this is like. The

doctors don't seem to know much.

> I have a couple of more questions

> When my trouble first started 18 months ago, I had a Barium Swallow, but the

tell tale Achalasia birds beak was not there. Does that rule out Achalasia? Or

can that happen in the early stages?

> Also, does anyone here have a Hiatal Hernia with Achalasia?

> Thanks so much!!

> Margie

>

[Guest guest]

Hi ,

That is too bad the HM didn't work! That must be frustrating. Did they know

you had the HH when you went in for the HM?

I have a Hiatal Herniia, so the doc said that I couldn't have Achalasia...I

figured he was incorrect on that!

> >

> > Thank you all so much for your responses. It is very helpful to hear your

stories and get advice from those who REALLY know what this is like. The

doctors don't seem to know much.

> > I have a couple of more questions

> > When my trouble first started 18 months ago, I had a Barium Swallow, but the

tell tale Achalasia birds beak was not there. Does that rule out Achalasia? Or

can that happen in the early stages?

> > Also, does anyone here have a Hiatal Hernia with Achalasia?

> > Thanks so much!!

> > Margie

> >

>

[Guest guest]

Yes the doc knew about it and told me he would fix it at the same time. Many

people here have HH and Achalasia...it seems quite common to have both!

> > >

> > > Thank you all so much for your responses. It is very helpful to hear your

stories and get advice from those who REALLY know what this is like. The

doctors don't seem to know much.

> > > I have a couple of more questions

> > > When my trouble first started 18 months ago, I had a Barium Swallow, but

the tell tale Achalasia birds beak was not there. Does that rule out Achalasia?

Or can that happen in the early stages?

> > > Also, does anyone here have a Hiatal Hernia with Achalasia?

> > > Thanks so much!!

> > > Margie

> > >

> >

>

[Guest guest]

Hey, Margie: try this --

achalasia/message/14748

I think it speaks *directly* to your question. . . .

>

> Thank you all so much for your responses. It is very helpful to hear your

stories and get advice from those who REALLY know what this is like. The

doctors don't seem to know much.

> I have a couple of more questions

> When my trouble first started 18 months ago, I had a Barium Swallow, but the

tell tale Achalasia birds beak was not there. Does that rule out Achalasia? Or

can that happen in the early stages?

> Also, does anyone here have a Hiatal Hernia with Achalasia?

> Thanks so much!!

> Margie

>

[Guest guest]

Hi Margie -

Four years before I was diagnosed with Achalasia I had a Barrium Swallow

test that did not show a definitive birds beak narrowing, so the GI doc

diagnosed me with GERD and started giving me Acid Reflux meds to give me

relief. Now four years post-GERD diagnosis the GI doc admitted to me that

they totally missed on the diagnosis and wished that he would have had me

do a Manometery (sp??) test. Over the last four years my condition slowly

got worse and finally after constant fluid regurgitation they did another

Barrium Swallow test and stopped after the first couple swallows because my

E just swelled up with the Barrium fluid. Next I had a Manometery test

which confirmed that my LES was Hypertensive but the rest of my E was

functioning properly. So now I am on waiting list for HM surgery, which is

scheduled for April. About the HH question, I have never had that and do

not think i require it either.

Best of luck in your Achalasia Journey.

Geoffrey - Northern Virginia, USA

On Thu, Feb 23, 2012 at 10:46 PM, puddleriver13 <puddleriver13@...>wrote:

> **

>

>

> Hey, Margie: try this --

> achalasia/message/14748

>

> I think it speaks *directly* to your question. . . .

>

>

>

>

> >

> > Thank you all so much for your responses. It is very helpful to hear

> your stories and get advice from those who REALLY know what this is like.

> The doctors don't seem to know much.

> > I have a couple of more questions

> > When my trouble first started 18 months ago, I had a Barium Swallow, but

> the tell tale Achalasia birds beak was not there. Does that rule out

> Achalasia? Or can that happen in the early stages?

> > Also, does anyone here have a Hiatal Hernia with Achalasia?

> > Thanks so much!!

> > Margie

> >

>

>

>

[Guest guest]

I was diagnosed with Achalasia. Had the HM 6 weeks ago. The hiatal hernia

was only discovered during the surgery. Ironically the fix for a HH s a

fundoplication (Toupet) which I was getting already with the HH. I hear

(through this group) that it's very common to get HH with Achalasia. I'm

happy to say that I believe I'm doing quite well. Still on a regulated

diet for about 2 more weeks but food is going down better over time.

My biggest concern right now is whether to continue taking the acid

reduction pills after recovery.

Best to all and I value anyone's opinions on the PPI's / H2 blockers.

from New Yorks Hudson Valley

[Guest guest]

Hi ,

 

Thank you for giving us a success story for encouragement. Lately, some of the

stories could have had better outcomes.

 

So, what would happen to you if you stopped taking the PPI's? If the answer is

" nothing, " then stop taking them.

From what you are saying, you had the wrap, food is going down, and PPI's can

affect your stomach over time.

See what happens if you stop. You can, without harm, always start again.  PPI's

were never intended for permanent use, but it evolved into such a purpose. If

you can get along fine without them, you will be better off. For Achalasians who

must take PPI's, it appears the right thing to do.

 

________________________________

From: Kalmancy <gkalmancy@...>

achalasia

Sent: Friday, February 24, 2012 12:31 PM

Subject: Re: Hi All, new here and undiagnosed

 

I was diagnosed with Achalasia. Had the HM 6 weeks ago. The hiatal hernia

was only discovered during the surgery. Ironically the fix for a HH s a

fundoplication (Toupet) which I was getting already with the HH. I hear

(through this group) that it's very common to get HH with Achalasia. I'm

happy to say that I believe I'm doing quite well. Still on a regulated

diet for about 2 more weeks but food is going down better over time.

My biggest concern right now is whether to continue taking the acid

reduction pills after recovery.

Best to all and I value anyone's opinions on the PPI's / H2 blockers.

from New Yorks Hudson Valley

[Guest guest]

I never had a problem with reflux. My problem was getting food down. My GI

doc didn't really know if I had " SILENT " reflux. Endoscopy always showed

my esophagus to be normal aside from the motility issue. My primary doc

put me on Prilosec " just in case " . GI said keep taking it. For what? Now

that I had the surgery, I'm more open to reflux. I know. My surgeon told

me that I MUST take it during the healing stage. After that, I'm the one

to decide if I need it.

If reflux could be silent, how do I know if my E is being damaged over

time? Its a very gray area. Catch 22. I've done research on long-term use

of these meds so I know that they are very over-prescribed and not good.

My dad who is 86 complained to his doc about his stomach bothering him. So

the doc immediately put him on prilosec without even knowing the problem.

He told me he never had heartburn. He's taking it for some time now. Poor

man is always weak and tired. Probably not getting enough nutrition. Poor

digestion. I told him to stop taking it for a week or 2 and see if that

changes for the better. Many times its the drug companies that benefit not

the people taking them.

[Guest guest]

Hi ,

 

Thank you for your response. You appear to be very knowledgeable about the

topic, which in your case boils down to whether or not you have reflux if you

don't feel any signs of it.  Clearly you understand the long term effects of

taking a PPI.   If the acid refux is silent, I believe a 24 hour Ph test

might reveal whether or not there is an acid problem. I would like if you could

get a consensus of opinions on this.

 

________________________________

From: Kalmancy <gkalmancy@...>

achalasia

Sent: Friday, February 24, 2012 7:37 PM

Subject: Re: Re: Hi All, new here and undiagnosed

 

I never had a problem with reflux. My problem was getting food down. My GI

doc didn't really know if I had " SILENT " reflux. Endoscopy always showed

my esophagus to be normal aside from the motility issue. My primary doc

put me on Prilosec " just in case " . GI said keep taking it. For what? Now

that I had the surgery, I'm more open to reflux. I know. My surgeon told

me that I MUST take it during the healing stage. After that, I'm the one

to decide if I need it.

If reflux could be silent, how do I know if my E is being damaged over

time? Its a very gray area. Catch 22. I've done research on long-term use

of these meds so I know that they are very over-prescribed and not good.

My dad who is 86 complained to his doc about his stomach bothering him. So

the doc immediately put him on prilosec without even knowing the problem.

He told me he never had heartburn. He's taking it for some time now. Poor

man is always weak and tired. Probably not getting enough nutrition. Poor

digestion. I told him to stop taking it for a week or 2 and see if that

changes for the better. Many times its the drug companies that benefit not

the people taking them.

[Guest guest]

.

Through this wonderful group of friends, I was introduced to a book titled

" Why Stomach Acid Is Good For you " by , J. Still reading it and very

informative. I recommend it highly for " everyone " to read if you really

want to take ownership of your health.

The PH test.... who is or how is that done? I'm seeing my primary doc this

Tuesday for a physical and would ask him as well. I'm going in loaded with

questions.

[Guest guest]

Hi Margie,

I initially had a barium swallow about 3 years ago and the first thing the

radiologist said was, " you don't have achalasia. " Lol The birds beak just hadn't

formed yet. It took about a year and a half for the symptoms to become severe,

so then they did another barium swallow and that's when it was officially

diagnosed. A manometry sealed the deal.

I had an HM with the wonderful Dr Luketich in Pittsburgh and now I can eat

anything.

Things I did to survive while I couldn't eat:

#1. pain = spasm = food stuck in e or heartburn or reaction to butter, milk,

yogurt for me.

Figuring out what caused pain helped control it . I can since have milk after

surgery.

#2. Peppermint helped me a lot. When feeling pain, I would eat an altoid to hold

it off, then brew up a cup of mint tea in the microwave. I would also take an

aleve, which is a painkiller that also relaxes muscle. Some ppl had success

chugging yogurt.

Some ppl do carbonated bvgs- that Only worked for me if I sipped the fizzies off

the top. The liquid actually made it worse.

Mint can also cause heartburn, which can trigger the heart attack pain, so be

wary of it. Once I hit the later stages I had absolutely no heartburn - the LES

was too tight to open.

#3. Stress causes this disease to get worse. I remember by the last week of

school (very stressful time) I couldn't eat or drink. I finally nursed it back

to help by eating liquids, then I twisted my ankle, and the next day I was at

square one again. Wish there was more documentation on this. Cut stressors out

of your life.

#4. Magnesium and Vitamin b 50 complex. I took bit b from a liquid - found in

Walgreens. I LOVED this magnesium fizzy drink mix - it was awesome! It got me

thru the summer. Got it at vitamin shoppe. Magnesium helps the smooth muscle

relax.

I also ate a lot of junior mints to keep the calories up.

Good luck finding a good doctor, please get someone who has done 100+ HMs.

>

> Thank you all so much for your responses. It is very helpful to hear your

stories and get advice from those who REALLY know what this is like. The

doctors don't seem to know much.

> I have a couple of more questions

> When my trouble first started 18 months ago, I had a Barium Swallow, but the

tell tale Achalasia birds beak was not there. Does that rule out Achalasia? Or

can that happen in the early stages?

> Also, does anyone here have a Hiatal Hernia with Achalasia?

> Thanks so much!!

> Margie

>

[Guest guest]

Hi ,

Thanks so much for your response and your suggestions on what do do while

waiting for a diagnosis. I have started a health journal to see what my pain

patterns are and how they are associated with my food intake, activites and

stress. I have noticed that my pain seems to be centered mainly around what I

eat. Like you, butter and any real fatty foods seem to bring on the upper

abdominal pain. Other foods or drink cause the angina-like chest pain...eg

carbonated beverages, cheese, any raw vegetables, certain crackers.

I stopped drinking alcohol 5 months ago...had a very bad attack after a big meal

with dessert and red wine. At that time, I thought I must have something wrong

with my pancreas, so stopped drinking. Since then, I have continued to lose

weight, and I have constant pain....varying degrees, but constant. I can't find

any info on whether wine is bad if one has achalasia. Do you know?

Also, I have been trying to find info on any correlation between Achalasia and

canker sores, teeth sensitivity, bad breath etc.

I found a GI who works at a teaching hospital (University of Calgary Foothills

Hospital)... They have a Motility Clinic. I am waiting for a call with my

appointment date. I was told it won't be until the end of April, but that

doesn't seem long considering how long I have been living like this.

Thanks again ! Take care,

Margie

> >

> > Thank you all so much for your responses. It is very helpful to hear your

stories and get advice from those who REALLY know what this is like. The

doctors don't seem to know much.

> > I have a couple of more questions

> > When my trouble first started 18 months ago, I had a Barium Swallow, but the

tell tale Achalasia birds beak was not there. Does that rule out Achalasia? Or

can that happen in the early stages?

> > Also, does anyone here have a Hiatal Hernia with Achalasia?

> > Thanks so much!!

> > Margie

> >

>