New to the Group

[Guest guest]

I have been following the group for about 6 months now but have just recently

joined. I am a 35 year old male and have been managing A for about 5 years now.

Nitrates have been the most effective treatment for me to be able to eat but

about 3 months ago, my condition progressed to include coughing at night from

fluids backing up into my chest. It's really scary to wake up in the middle of

the night choking and having a painful cough similar to a feeling of drowning.

I am also concerned with getting Pneumonia as I have learned that this is likely

to occur with fluids in the lungs. I have seen Dr. Karhillas of Northwestern in

the past but his office failed to call me back after recent attempts to get my

prescription refilled. I have since made an appointment with the Mayo Clinic

Rochester in 2 weeks. My hopes are for them to evaluate whether I will be a

good candidate for surgery. I also made an appointment today for a week from

Thursday with Dr. Marco Patti of UIC. It appears that he is one of the best and

I feel that the surgery is the only option I have left since the medication I

take only gives me temporary relief for when I need to eat and doesn't help

while I'm sleeping and Botox and dilation have not been effective. Do you think

I am getting too many doctors involved? I am going to try and elevate my bed

in hopes that I can prevent the fluid backup until a long term plan is worked

out. Thanks to all on this site as the knowledge everyone provides makes

managing this rare condition a little easier.

Jeff

[Guest guest]

Are you using a wedge pillow at night Jeff, to keep you propped up? I got

pneumonia the week before I was diagnosed with

Achalasia and spent 4 nights in the hospital. Yes, it scary waking up in the

middle of the night with liquid in mouth choking. I also think

it's a good idea that you are getting a few doctors involved. As many have

posted you want someone with experience, ask a lot of

questions, so you can be educated to make the best decision as to have surgery

or dilation. Hope all works out for you at your appointment.

California

[Guest guest]

Marisol wrote:

>

> ... before having a myotomy. That was 30 years ago. ...

>

It is always nice to hear from someone who got 30 years or more out of a

myotomy.

> ... I heard that being on omeprazole for too long may have worse side

> effects, such as cancer. Has anyone else been on omeprazole long term?

>

There is a lot of misinformation out there about omeprazole and the

other Proton Pump Inhibitors (PPI).

Stomach cancer in the general US population is about 9 (+or- 3 depending

on race) per 100,000 per year, so it is a low risk. That is about the

same for anyone being killed while driving or riding in a car, but it is

only half the rate for the population of just licensed drivers dieing in

a car crash. Such risks don't stop people from driving or rinding in

cars because the benefits seem to be greater than the risks. There was a

study that found that people who took PPIs had more stomach cancers than

those that took another type of acid reducer (H2RA, often called H2

blockers) or those that took neither. There is a major problem with the

study though. People who have problems that increase their risk of

stomach cancer are more likely to be on these medications. Those people

with the worst cases are more likely to be on PPIs than H2 blockers and

be on them longer. The authors of the study acknowledged this and

referred to it as " reverse causation and confounding by indication. " It

may actually be that the PPIs reduce the risk of stomach cancer but the

apparent increase is do to the reverse causation and confounders.

Cancer.Gov Stomach Cancer Snapshot

http://www.cancer.gov/aboutnci/servingpeople/snapshots/stomach.pdf

Proton pump inhibitors and risk of gastric cancer: a population-based

cohort study.

http://www.ncbi.nlm.nih.gov/pubmed/19352380

" Although our results point to a major influence of reverse causation

and confounding by indication on the association between PPI use and

gastric cancer incidence, the finding of increased incidence among PPI

users with most prescriptions and longest follow-up warrants further

investigation. "

FATALITY ANALYSIS REPORTING SYSTEM

http://www-fars.nhtsa.dot.gov/Main/index.aspx

The FDA put out a statement about the risk of bone fractures and taking

PPIs long-term. This statement often gets misrepresented because people

ignore the fact that the FDA did not say PPIs long-term cause bone

fractures. What they said was that some studies, which they acknowledged

to have problems in methods and to have contradictory results, found

association between taking PPIs long-term and bone fractures. The FDA

did not say the association was real or even if it was that it would

prove causation. What the FDA was saying was that there was concern and

until those concerns could be proved one way or another people should

understand the concern and the reasons for them and there limitations,

not that people should not use PPIs long-term. People often say the FDA

is against long-term use because the FDA approved label indication for

PPIs is for short-term use. While that means that no one ever did the

work to get FDA approval for long-term use it does not mean it is wrong

to use it long-term. Such use is called " off label " use. Almost any

pharmacological treatment for achalasia is going to be an off label use.

Things that are more likely to be a problem long-term are the absorption

of things like B12 and magnesium. These are easy to treat by taking

supplements if need. A test now and then can let you know. Don't listen

to people that say you need to have sublingual B12 or take it in shots.

If you take enough of it you will absorb enough even if you have no

Intrinsic factor.

A greater risk of cancer is untreated acid reflux. But even without the

risk of cancer from acid reflux there is also the heartburn,

esophagitis, esophageal ulcers and Barrett's esophagus. I would rather

take the PPI and perhaps the B12 and magnesium than deal with those

problems or the risk of esophageal cancer. I do take a PPI and don't

plan on stopping. I do take as little as possible. I find I don't need

to take one everyday and I can anticipate some foods and events that are

likely to cause acid reflux. I take a PPI before those events if it has

been a while. If I get acid reflux I take an antacid to neutralize it.

> How often have people with achalasia been going for an Endoscopy or a

> manometry?

>

It depends on your doctor and your problems. There are also the barium

swallow and 24hr pH tests that are sometimes done. Some doctors like to

see their patients every year or few years. Other doctors only have

their patients come back if they have problems. My surgeon only wants to

see me if there are problems but my GI likes to see me regularly,

frequency depending on finding.

notan

[Guest guest]

Welcome, . It's not denial ~~ it's lack of information, lol! I think until

you've gone through it, it's really hard to believe how fast and hard an LES can

shut down on you. And if you're a help your selfer, you try everything you can

all along the way to " handle " it. Pretty much no one sees it as life

threatening until it IS life threatening, and some, not then. It's VERY hard for

even doctors to believe than one can't swallow *water*. . . . Hang in there: at

least you know what you are fighting. Bon courage. /WV

>

> Hi everyone,

>

> I wanted to introduce myself. My name is and I am a 40-year-old

stay-at-home mom of a 5yo daughter and 3yo son. I was just diagnosed with

Achalasia in December after months of tests trying to figure out what was going

on (hope to NEVER have another Manometry test again)! I had my first symptoms

(feeling like I was eating too fast) a year ago and went downhill really fast. I

saw Dr. Dempsey at Penn in January and elected to hold off on the HM

surgery because I was still able to get some food down and thought I could

manage on my own- ha-talk about denial! Now, 3 months later, I can't get

anything down- food or liquids. I saw Dr. Falk on Friday and he agreed that

I needed treatment asap. He called Dr. Dempsey who said that he will get me into

his office this week. Hopefully I will have surgery within the next two weeks.

In the meantime, my urine is brown, I'm having dizzy spells, and am super

fatigued. I went to an urgent care facility yesterday and got an IV, and may

need more while I wait. Fun, fun!

>

> Anyway, I wanted to say how thankful I am that this site exists. I have been

reading your posts and have gotten so much great information from everyone. I

would be completely lost without having read all of your stories. Thank you so

much for sharing and I will do the same.

>

> Take care,

>

>