Re: I thought I was the only one!

[Guest guest]

Welcome to the group. We are here for each other and we will help out as much as we can.

There is a lot of information and friends in here and there is light at the end of the tunnel.

[Guest guest]

Hello, !

Welcome to the Achalasia sanity society, haha. Yes, you have found your

kin. We get it. In here you will find all sorts of people with all levels of

this affliction. I had A for 8 years before being diagnosed. They thought I

had GERD. Typical story for many of us. You don't mention where you live.

THere is a resource in the files or database that has our reccomendations and

notes on doctors from all over the world. The key to feeling good with this

disease is to find the best BEST BEST doctor you can. Make sure your doc has

PLENTY of experience with Achalasia patients. If your doctor is not experienced

with lots of A patients, keep looking for one who is. I suffered like you are

currently suffering for a long time before being diagnosed. Once I was finally

diagnosed, I had practically diagnosed myself. I was not surprised to learn

that I had A. I opted for the laparascopic surgery three years ago as of

12/5/04. (Happy Anniversary to meeeeeeee!!!!!!!!) I had a great surgeon in

Houston. I went home the next day and have had wonderful results from my

surgery. I eat anything, sleep flat, and have no reflux or night time choking.

Let us know where you live. And welcome to the club. WE know how you feel and

someone in here has an answer for just about anything.

in Houston

>

> Hi everyone. I just found this club. And I'm glad I did. I am so in

> the dark with what I have that I felt so alone. Now that I know what

> I have it took me a little searching to find out more information.

> I'm 32 and I've only had this for about a year. And its frustrating,

> painful, and I get jealous of all the people who can eat a pizza or

> a steak without complications.

> My options are mashed potatoes, ice cream and a health shake called

> Suplimed which provides me with calories and vitamins and minerals.

> I take Prevacid and I take Ametryptaline for my spasms. (I also have

> something called DES which is Diffuse Esophageal Spasms)...

> I'd like to make friends and learn everything there is to know about

> this disease. Its hard to talk about it with people who look at you

> like you don't know what the hell you are talking about.

> I'm scared and feel so alone even though my family is there.

> What are my options?? Anyone have any good recipes?? How do you deal

> with the anger and resentment and the frustrations and jealousy??

> Please, anyone....any help would be greatly appreciated as I'm so

> frustrated and alone in this right now...Thank you for your time.

[Guest guest]

Hi ,

I was around 29 when I was first diagnosed.Have had this for approx

16 yrs.I just found this group this yr.It is the best and I wish I

would have found it yrs earlier.Everyone knows what you are going

through and can give you advice on almost anything.

I get upset sometimes when I see my friends/family woofing down food

and I am lucky to get down mashed potatoes or pudding.I just keep

thinking it will get better.I can't expect them to stop eating just

b/c I can't.I know it's hard but we can do it.

Have you had any treatment yet? Where do you live? I live in Ohio

and go to Cleveland Cliniic.I have DR Rice hE is the best.Had

my lap heller done on dec 1st.I am still not swalowing very well but

Dr rice is checking that monday.My advice is don't wait to long to

get treatment like I did.My " E " was so enlarged by the time I went

back to have surgery that it caused some complication.

ASk anything usally someone has an answer or can tell you where to

find it.Welcome to group.

Sherry from Ohio

>

> Hi everyone. I just found this club. And I'm glad I did. I am so in

> the dark with what I have that I felt so alone. Now that I know

what

> I have it took me a little searching to find out more information.

> I'm 32 and I've only had this for about a year. And its

frustrating,

> painful, and I get jealous of all the people who can eat a pizza or

> a steak without complications.

> My options are mashed potatoes, ice cream and a health shake called

> Suplimed which provides me with calories and vitamins and minerals.

> I take Prevacid and I take Ametryptaline for my spasms. (I also

have

> something called DES which is Diffuse Esophageal Spasms)...

> I'd like to make friends and learn everything there is to know

about

> this disease. Its hard to talk about it with people who look at you

> like you don't know what the hell you are talking about.

> I'm scared and feel so alone even though my family is there.

> What are my options?? Anyone have any good recipes?? How do you

deal

> with the anger and resentment and the frustrations and jealousy??

> Please, anyone....any help would be greatly appreciated as I'm so

> frustrated and alone in this right now...Thank you for your time.

[Guest guest]

Hi #2

Welcome to the group. You will find

soooo much information here, it is unbelieveable. The best thing you can do

is find an experienced GI/surgeon. This is soooooo important, I can’t

stress it enough! Read a month or so of past posts. You will find

out what this group is all about. You will also most likely find a bunch

of anwers to questions you didn’t know you had.

I have had achalasia for almost a year

(officially). You’re right- it is no fun. Stressful even.

I was right were you are at with the mashed potatoes and shakes. I had

decent luck with really overcooked pasta, to the point where it almost

dissolved in your mouth… not very nutritious, I know, but at least I was

eating something.

There absolutly are options for you.

Dilations: Your

GI/surgeon or ? will put you to sleep, and put a tube down your

throat. They will insert a small balloon down to the LES, and

blow it up, trying to stretch/tear the muscle to provide some

relief. There are MANY people who have had this done, who can tell

you more about it. This is not a permanent fix. For some people it

doesn’t work at all, and for some, it will last for months or

years.

2. Botox: Your GI/surgeon or ? will again put you

too sleep. The tube will be down the throat again, and locate the

LES. They will inject botox into the muscle which paralyzes it, causing

it to relax. This is also not a permanent fix. It requires repeat

treatments. My GI told me that each repeated injection of botox will on

average last half as long as the last time. Anyone else…?

Laparoscopic Heller Myotomy:

Your surgeon (VERY EXPERIENCED, please!) will make 5 – 6 tiny

incisions in your tummy. He will go in, and cut the muscle

vertically, to relief the tension. Sometimes the surgeon will also

perform a partial or full wrap, which can help prevent future trouble with

heartburn/reflux, and holds the new cut apart. This is usually the

option that surgeons will recommend. Previous rounds of botox and/or

dilations can make the surgery less successful as they cause scar tissue

at the site. With the lap surgery, the patient is only in the

hospital a night or two, and recovery time is about 2- 3 weeks. This

surgery can also be performed Open, with the outside insision from the

navel to the ribcage. I had this done lap about 10 weeks ago, and

now have a completey normal life!

Please look into all the options, and find

out as much as you can about this condition! Great help is out there!

Where are you from? There may be

someone else with achalasia right around the corner from you who can recommend some

great doctors in your area – or some to avoid! L

Take Care !

21

Chilliwack, BC

I thought I

was the only one!

Hi everyone. I just found this club. And I'm glad

I did. I am so in

the dark with what I have that I felt so alone.

Now that I know what

I have it took me a little searching to find out

more information.

I'm 32 and I've only had this for about a year.

And its frustrating,

painful, and I get jealous of all the people who

can eat a pizza or

a steak without complications.

My options are mashed potatoes, ice cream and a

health shake called

Suplimed which provides me with calories and

vitamins and minerals.

I take Prevacid and I take Ametryptaline for my

spasms. (I also have

something called DES which is Diffuse Esophageal

Spasms)...

I'd like to make friends and learn everything

there is to know about

this disease. Its hard to talk about it with

people who look at you

like you don't know what the hell you are talking

about.

I'm scared and feel so alone even though my family

is there.

What are my options?? Anyone have any good

recipes?? How do you deal

with the anger and resentment and the frustrations

and jealousy??

Please, anyone....any help would be greatly

appreciated as I'm so

frustrated and alone in this right now...Thank you

for your time.

[Guest guest]

Welcome 2!

You will find lots of information on this site in the database and other

places on the Website, and also look back several weeks worth of posts.

Please feel free to ask questions - someone will answer. Do tell us where

you are from and then some one from your area will tell you which are good

doctors for this.

Good luck

Joan

I thought I was the only one!

>

>

> Hi everyone. I just found this club. And I'm glad I did. I am so in

> the dark with what I have that I felt so alone. Now that I know what

> I have it took me a little searching to find out more information.

> I'm 32 and I've only had this for about a year. And its frustrating,

> painful, and I get jealous of all the people who can eat a pizza or

> a steak without complications.

> My options are mashed potatoes, ice cream and a health shake called

> Suplimed which provides me with calories and vitamins and minerals.

> I take Prevacid and I take Ametryptaline for my spasms. (I also have

> something called DES which is Diffuse Esophageal Spasms)...

> I'd like to make friends and learn everything there is to know about

> this disease. Its hard to talk about it with people who look at you

> like you don't know what the hell you are talking about.

> I'm scared and feel so alone even though my family is there.

> What are my options?? Anyone have any good recipes?? How do you deal

> with the anger and resentment and the frustrations and jealousy??

> Please, anyone....any help would be greatly appreciated as I'm so

> frustrated and alone in this right now...Thank you for your time.

>

>

>

>

>

>

>

>