Re: Young New Member Seeking Support!

[Guest guest]

Aileen, wecolme to the group. You sound just like I was. Doing everything to avoid the surgery. Get the surgery it is not bad. Find a surgeon that specialises in this disease. Ask as many question that you can think of. I am doing very well after my surgery. The surgery now days is not a hack shop they are very concerned about the patient and making them as comfortable as possible. The lapro surgery is less invasive and the recovery time is a lot faster. You will not regret getting it done.

Again welcome to the group and our family. Sorry to hear you are having the trouble that you are but there is hope.

in Suffolk

[Guest guest]

Aileen, It sounds like you have been bearing the brunt of this for a lot of years without support and I'm glad you found this group. You will find a lot of answers here and find that you will be feeling much more comfortable about the upcoming surgery. I was diagnosed about a year ago. Rather quickly, but I could not stand it, so I immediately started looking... I found this group!!! I had the surgery in October and have been eating rather well since then. I will admit to having some meals where I think I'm starting all over again, but my food goes down, just need patience!! The first couple of weeks after the surgery were a little rough, not bad, but rough, with the spasms, but again, I found a lot of help here. The glorious day when I was told to try food again, nothing can explain that until you feel yourself eating like a normal person again!!!! I have NOOOO advise on the manometry test, maybe someone else will, I hated it too. One reason why I elected for the surgery so fast as I never want to have that done again!!! Good luck and keep reading these posts. Go back as far as you have time for, you find on days that you are down, reading these can help you feel good about yourself too! Keep in touch! Crystal (from NY)aileenmonroe <axbarbet@...> wrote: Hello, I'm Aileen Monroe, and I've had achalasia for six years now, since I was twenty. I've been diagnosed via endoscopy, barium swallow, and that gross tube test, and I've undergone several botox injections, several balloon dilations, and medications. Unfortunately, it looks like I'm going to have to have

laparascopic surgery this summer. I'm aspirating regularly, and I've thrown up some of my food immediately after swallowing (or trying to) it. I'm feeling very low right now, which is why I searched for and joined a support group. Surprisingly, I find it easier to pop pieces of junk food into my mouth all day rather than attempt to eat healthy food. I love fruit, but nothing will go down any longer. I love meat, but that's more of a struggle than fruit is. I used to live on breads, but that's over now, too. Consequently, I cannot motivate myself to maintain a healthy diet. My weight is OK, but I know my body is thirsting for nutrition. What's worse, I teach high school, so I'm on my feet all day and only get a twenty-minute break at lunch time. I tried slimfast drinks, but they're gross. Any recommendations?I have to have the three tests all over again in the next month because my surgeon refuses to do anything

until he has seen recent tests. I hate going through the test with the tubes up the nose and down into the stomach. Any suggestions on how to deal with that? Is child labor as bad? If so, maybe I won't have children!I'm afraid of the surgery. Have people had it? Is it successful most of the time? I researched numerous case studies on this surgery and found some disturbing facts. Perhaps the most unsettling is that it is not uncommon for surgeons to have to open up patients in the middle of the operation. I think I'm just petrified because it will be my first major hospital experience.I read the welcome letter and some of the other documents in the files. I was excited to hear about ways to suppress spasms. Mine hurt so much. My doctor has me on nifedipine to help with the pain. I plan to try some of the techniques one of the files offered. -Aileen, a 26-year-old from Boston

[Guest guest]

Aileen, my name is Vinnie and I was Diagnosed with A

about 2 months ago. I also could not eat or drink

anything. I also am a teacher and a coach and my

energy was really bad. For the last month before my

surgery I started eating a ton of Yogurt with meal

replacement packets that I found at GNC. I mixed the

packets into the yogurt. The yogurt went down ok and

the meal packets I mixed in gave me at least some

energy to keep me going. It also stabalized my weight

loss a little ( losing only 3 pounds a week as opposed

to 10 ). Find anything that you can somewhat get down

and add these packets with extra protein. It will

help.

As far as the surgery goes, I had it 2 weeks ago

today. I had the Laproscopic Heller Myotomy with a

toupet wrap. It went great. I was a little sore in

my chest and shoulders for 5 days but only took

Tylenol. My stomach needed to get adjusted to having

food and I got full very fast. I had bad diarehea for

5 days. I had some cramping as well but nothing too

bad. Other than that I was out of the hospital in less

than 24 hours and I was eating soft foods in 12 hours

with no problems. Within 4 days I tried other foods,

and 2 weeks out I am eating everything in site. I am

only 35 and I think that is why I bounced back so

fast. I would think you would bounce back very well.

I went back to work only this week as I wanted to make

sure I was fully recovered. I still have some very

minor swallowing issues but is usually after I have

eaten too much. Heartburn was a problem in the 1st

week but my Prilosec has quelled that pretty well.

Have the surgery!!!! Make sure you give yourself time

to recover as it is still surgery. Do not rush back

and enjoy eating. My energy is now better than it was

in 3 months. Why are you waiting until summer? Get

it done now!!!!!

Vinnie

--- aileenmonroe <axbarbet@...> wrote:

> Hello, I'm Aileen Monroe, and I've had achalasia for

> six years now,

> since I was twenty. I've been diagnosed via

> endoscopy, barium

> swallow, and that gross tube test, and I've

> undergone several botox

> injections, several balloon dilations, and

> medications.

> Unfortunately, it looks like I'm going to have to

> have laparascopic

> surgery this summer. I'm aspirating regularly, and

> I've thrown up

> some of my food immediately after swallowing (or

> trying to) it. I'm

> feeling very low right now, which is why I searched

> for and joined a

> support group.

>

> Surprisingly, I find it easier to pop pieces of junk

> food into my

> mouth all day rather than attempt to eat healthy

> food. I love fruit,

> but nothing will go down any longer. I love meat,

> but that's more of

> a struggle than fruit is. I used to live on breads,

> but that's over

> now, too. Consequently, I cannot motivate myself to

> maintain a

> healthy diet. My weight is OK, but I know my body is

> thirsting for

> nutrition. What's worse, I teach high school, so I'm

> on my feet all

> day and only get a twenty-minute break at lunch

> time. I tried

> slimfast drinks, but they're gross. Any

> recommendations?

>

> I have to have the three tests all over again in the

> next month

> because my surgeon refuses to do anything until he

> has seen recent

> tests. I hate going through the test with the tubes

> up the nose and

> down into the stomach. Any suggestions on how to

> deal with that? Is

> child labor as bad? If so, maybe I won't have

> children!

>

> I'm afraid of the surgery. Have people had it? Is it

> successful most

> of the time? I researched numerous case studies on

> this surgery and

> found some disturbing facts. Perhaps the most

> unsettling is that it

> is not uncommon for surgeons to have to open up

> patients in the

> middle of the operation. I think I'm just petrified

> because it will

> be my first major hospital experience.

>

> I read the welcome letter and some of the other

> documents in the

> files. I was excited to hear about ways to suppress

> spasms. Mine

> hurt so much. My doctor has me on nifedipine to help

> with the pain.

> I plan to try some of the techniques one of the

> files offered.

>

> -Aileen, a 26-year-old from Boston

>

>

>

>

__________________________________________________

[Guest guest]

Hi Aileen,

I know some people get upset if we recommend specific stuff to take,

but since you asked about nutrition and also someone had recommended

GNC shakes, I wanted to tell you my experience because I think it

would really help. I hope it doesn't offend anyone - beleive me, not

my intention, only to share!

I have had A for about 5 years and was losing lots of weight, no

energy and only eating junk food like you, (if eating anything at

all) and I started using shakes from Herbalife. They taste great,

have lots of protein, but more important, they have tons of

nutrition. I am not losing weight any more, (I haven't had the

surgery yet either - no insurance) and my energy is up. Of course it

isn't the same as when I was eating, but I feel these shakes have

made all the difference. You can't get them from stores or from

Herbalife itself, so if you need help finding them just email me and

I can give you my distributors number or website.

It's really important for us to eat as healthy as we can since we

don't eat much if anything, what we do get in our bodies needs to be

the best. I know easier said than done, but we all need to remember

that.

Take care and welcome to the group.

Nate

>

> Hello, I'm Aileen Monroe, and I've had achalasia for six years now,

> since I was twenty. I've been diagnosed via endoscopy, barium

> swallow, and that gross tube test, and I've undergone several botox

> injections, several balloon dilations, and medications.

> Unfortunately, it looks like I'm going to have to have laparascopic

> surgery this summer. I'm aspirating regularly, and I've thrown up

> some of my food immediately after swallowing (or trying to) it. I'm

> feeling very low right now, which is why I searched for and joined

a

> support group.

>

> Surprisingly, I find it easier to pop pieces of junk food into my

> mouth all day rather than attempt to eat healthy food. I love

fruit,

> but nothing will go down any longer. I love meat, but that's more

of

> a struggle than fruit is. I used to live on breads, but that's over

> now, too. Consequently, I cannot motivate myself to maintain a

> healthy diet. My weight is OK, but I know my body is thirsting for

> nutrition. What's worse, I teach high school, so I'm on my feet all

> day and only get a twenty-minute break at lunch time. I tried

> slimfast drinks, but they're gross. Any recommendations?

>

> I have to have the three tests all over again in the next month

> because my surgeon refuses to do anything until he has seen recent

> tests. I hate going through the test with the tubes up the nose and

> down into the stomach. Any suggestions on how to deal with that? Is

> child labor as bad? If so, maybe I won't have children!

>

> I'm afraid of the surgery. Have people had it? Is it successful

most

> of the time? I researched numerous case studies on this surgery and

> found some disturbing facts. Perhaps the most unsettling is that it

> is not uncommon for surgeons to have to open up patients in the

> middle of the operation. I think I'm just petrified because it will

> be my first major hospital experience.

>

> I read the welcome letter and some of the other documents in the

> files. I was excited to hear about ways to suppress spasms. Mine

> hurt so much. My doctor has me on nifedipine to help with the pain.

> I plan to try some of the techniques one of the files offered.

>

> -Aileen, a 26-year-old from Boston

>

[Guest guest]

Hey Vinnie,

Thanks so much for your response. It's been great to read how well

so many people recover from the surgery. I'm going to try to work on

my eating habits now that I have multiple recommendations. It sure

is tough, though. Regarding why I haven't had the surgery yet, the

main reason is that I need to finish out the school year. Right now,

I'm planning and running a field trip for the junior class,

finishing up the yearbook with the staff, beginning the CD

supplement with the yearbook staff, taking a grad course for my

masters degree, and - of course - teaching. I feel like I cannot

leave during the school year!

Moreover, I have had to change doctors quite a bit since I've been

diagnosed. I had one doctor in Syracuse, NY, then started seeing Dr.

Sidney Cohen in Philly, then moved to Boston and began seeing

another doctor who doesn't do the operation. He recommended a

surgeon, but I don't know much about him...I've only met with him

once to begin planning the surgery. I'm afraid I should be checking

out tons of surgeons to make sure I pick the right one, but I don't

know how to go about something like that.

Thanks again for your honesty. It made me feel better.

-Aileen

>

> > Hello, I'm Aileen Monroe, and I've had achalasia for

> > six years now,

> > since I was twenty. I've been diagnosed via

> > endoscopy, barium

> > swallow, and that gross tube test, and I've

> > undergone several botox

> > injections, several balloon dilations, and

> > medications.

> > Unfortunately, it looks like I'm going to have to

> > have laparascopic

> > surgery this summer. I'm aspirating regularly, and

> > I've thrown up

> > some of my food immediately after swallowing (or

> > trying to) it. I'm

> > feeling very low right now, which is why I searched

> > for and joined a

> > support group.

> >

> > Surprisingly, I find it easier to pop pieces of junk

> > food into my

> > mouth all day rather than attempt to eat healthy

> > food. I love fruit,

> > but nothing will go down any longer. I love meat,

> > but that's more of

> > a struggle than fruit is. I used to live on breads,

> > but that's over

> > now, too. Consequently, I cannot motivate myself to

> > maintain a

> > healthy diet. My weight is OK, but I know my body is

> > thirsting for

> > nutrition. What's worse, I teach high school, so I'm

> > on my feet all

> > day and only get a twenty-minute break at lunch

> > time. I tried

> > slimfast drinks, but they're gross. Any

> > recommendations?

> >

> > I have to have the three tests all over again in the

> > next month

> > because my surgeon refuses to do anything until he

> > has seen recent

> > tests. I hate going through the test with the tubes

> > up the nose and

> > down into the stomach. Any suggestions on how to

> > deal with that? Is

> > child labor as bad? If so, maybe I won't have

> > children!

> >

> > I'm afraid of the surgery. Have people had it? Is it

> > successful most

> > of the time? I researched numerous case studies on

> > this surgery and

> > found some disturbing facts. Perhaps the most

> > unsettling is that it

> > is not uncommon for surgeons to have to open up

> > patients in the

> > middle of the operation. I think I'm just petrified

> > because it will

> > be my first major hospital experience.

> >

> > I read the welcome letter and some of the other

> > documents in the

> > files. I was excited to hear about ways to suppress

> > spasms. Mine

> > hurt so much. My doctor has me on nifedipine to help

> > with the pain.

> > I plan to try some of the techniques one of the

> > files offered.

> >

> > -Aileen, a 26-year-old from Boston

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hello, I am Sonet and like you I am in my 20's (at least for another

year). I was diagnosed last July and I had a heller's myotomy and

nissen fundoplication in Sept. I too was worried, however I feel

great and only have some problems with steaks and breads. But not

all the time. I still on occasion have spasms, but nothing like I

had before. The regurgitation is gone and I do not have to sleep

sitting up. (Boost was my supplement of choice and it did not taste

too bad) The surgery was fairly easy, and after about a week I

physically felt pretty good. I would defenitely recommend the

surgery. Also make sure that you have a good upfront doctor, I am

sure that there are plenty there-I was very lucky as there are not

many here in Nebraska and my doctor was awesome. As for the kids I

had c-sections (after 30 hours) and I thought the recovery was

simple and well worth it. Sonet Smutny

>

> Hello, I'm Aileen Monroe, and I've had achalasia for six years

now,

> since I was twenty. I've been diagnosed via endoscopy, barium

> swallow, and that gross tube test, and I've undergone several

botox

> injections, several balloon dilations, and medications.

> Unfortunately, it looks like I'm going to have to have

laparascopic

> surgery this summer. I'm aspirating regularly, and I've thrown up

> some of my food immediately after swallowing (or trying to) it.

I'm

> feeling very low right now, which is why I searched for and joined

a

> support group.

>

> Surprisingly, I find it easier to pop pieces of junk food into my

> mouth all day rather than attempt to eat healthy food. I love

fruit,

> but nothing will go down any longer. I love meat, but that's more

of

> a struggle than fruit is. I used to live on breads, but that's

over

> now, too. Consequently, I cannot motivate myself to maintain a

> healthy diet. My weight is OK, but I know my body is thirsting for

> nutrition. What's worse, I teach high school, so I'm on my feet

all

> day and only get a twenty-minute break at lunch time. I tried

> slimfast drinks, but they're gross. Any recommendations?

>

> I have to have the three tests all over again in the next month

> because my surgeon refuses to do anything until he has seen recent

> tests. I hate going through the test with the tubes up the nose

and

> down into the stomach. Any suggestions on how to deal with that?

Is

> child labor as bad? If so, maybe I won't have children!

>

> I'm afraid of the surgery. Have people had it? Is it successful

most

> of the time? I researched numerous case studies on this surgery

and

> found some disturbing facts. Perhaps the most unsettling is that

it

> is not uncommon for surgeons to have to open up patients in the

> middle of the operation. I think I'm just petrified because it

will

> be my first major hospital experience.

>

> I read the welcome letter and some of the other documents in the

> files. I was excited to hear about ways to suppress spasms. Mine

> hurt so much. My doctor has me on nifedipine to help with the

pain.

> I plan to try some of the techniques one of the files offered.

>

> -Aileen, a 26-year-old from Boston

>

[Guest guest]

Welcome Aileen!

I'm so sorry to hear how much pain/discomfort and all around YUCK you're

in. I was diagnosed with achalasia when I was 34 and had just had my

son (followed by a gallbladder removal). By the way, I'll take

childbirth over any of the issues related to achalasia any day. At

least with childbirth the pain does end soon enough and at the end of it

you have a beautiful baby boy (or girl). I opted for the Heller Myotomy

when my son was just 10 months old and I ended up being one of those

cases where the surgeon nicked my stomach and had to open my up to

stitch it up. I was in ICU for 6 days with tubes in my side. I

recovered and walked out of there a bunch of pounds lighter but in a

much better state all around than when I went in. Yes, that period

sucked but in the end I rarely if ever regurgitate. Life with achalasia

(even after a Heller) isn't perfect but for me life is leaps and bounds

ahead of what it was before I had the surgery. Because of achalasia I

only gained 15 pounds with my 8lb 14oz healthy baby boy. When I got

pregnant with my daughter about 6 months after the surgery I was in much

better shape and though swallowing became somewhat more difficult during

pregnancy I was able to gain a much more reasonable amount of weight

with her. I still have some bad days and use Nifedipine (pierce a

capsule and drip under my tounge) when I hit a rough day but those times

are just a handful of times per month. It sure beats the daily struggle

to get food or any sort of nurishment into my system. I used to try to

drink 1-2 Ensure shakes each day to get something to actually get to my

stomach. Yes they were not the most flavorful things but I then knew

calories and nurishment were getting to my stomach, especially when I

was pregnant.

I guess the short of it is good luck with the process to sugery, good

luck with the surgery and certainly don't rule out childbirth on account

of achalasia. My 2 beauties are the biggest reason I can continue to

deal with the day to day hassles of living with achalasia. None of the

options for " fixing " achalasia will fully take away achalasia. You just

have to find what is best for you for the long term and find your

balance from there.

You are in the right place to both get support and information. We are

all in here to know that we are not alone and be able to read/listen and

vent or speak when necessary. Welcome to Club Achalasia!

Take care,

Beverly

aileenmonroe wrote:

> Hello, I'm Aileen Monroe, and I've had achalasia for six years now,

> since I was twenty. I've been diagnosed via endoscopy, barium

> swallow, and that gross tube test, and I've undergone several botox

> injections, several balloon dilations, and medications.

> Unfortunately, it looks like I'm going to have to have laparascopic

> surgery this summer. I'm aspirating regularly, and I've thrown up

> some of my food immediately after swallowing (or trying to) it. I'm

> feeling very low right now, which is why I searched for and joined a

> support group.

>

> Surprisingly, I find it easier to pop pieces of junk food into my

> mouth all day rather than attempt to eat healthy food. I love fruit,

> but nothing will go down any longer. I love meat, but that's more of

> a struggle than fruit is. I used to live on breads, but that's over

> now, too. Consequently, I cannot motivate myself to maintain a

> healthy diet. My weight is OK, but I know my body is thirsting for

> nutrition. What's worse, I teach high school, so I'm on my feet all

> day and only get a twenty-minute break at lunch time. I tried

> slimfast drinks, but they're gross. Any recommendations?

>

> I have to have the three tests all over again in the next month

> because my surgeon refuses to do anything until he has seen recent

> tests. I hate going through the test with the tubes up the nose and

> down into the stomach. Any suggestions on how to deal with that? Is

> child labor as bad? If so, maybe I won't have children!

>

> I'm afraid of the surgery. Have people had it? Is it successful most

> of the time? I researched numerous case studies on this surgery and

> found some disturbing facts. Perhaps the most unsettling is that it

> is not uncommon for surgeons to have to open up patients in the

> middle of the operation. I think I'm just petrified because it will

> be my first major hospital experience.

>

> I read the welcome letter and some of the other documents in the

> files. I was excited to hear about ways to suppress spasms. Mine

> hurt so much. My doctor has me on nifedipine to help with the pain.

> I plan to try some of the techniques one of the files offered.

>

> -Aileen, a 26-year-old from Boston

>

>

>

>

>

>

[Guest guest]

Hi Aileen

I was also diagnosed about 6 years ago - and initially did a lot of research, tried some alternative medicine approaches (acupunture, homeopathic meds). Though these treatments made me more comfortable for awhile, my 'Western' doctor yelled at me. I don't see him anymore(!)

Anyway, I have been 'surviving' all these years. Things got comfortable enough - my weight stabilized (after dropping 25lbs) and I was able to eat certain regular foods (soups, salads, especially). But still, eating can be mighty uncomfortable at times. Restaurants are a challenge.

Lately, I have been regurgitating more regularly, unfortunately. As a result, I just logged back on to this group for the first time in years!!! I re-read some of my first posts to the group back in 2000! I'm rambling here, but I am not happy tolerating the discomfort much longer.

Guess I was hoping for a 'miracle cure' by now. But none has surfaced.

I resonated with some of the feelings in your note - and some of what has been going on for you. I was up until 3AM last night because I felt so uncomfortable. It took that long to regurgitate all the food that was 'plugging up' my system. Pretty gross, sorry.

I need the support of this group to get the surgery. You wrote the words I needed to write. I am afraid of the surgery, too! And, I feel ashamed that I am afraid. It sucks. I let this hold me back even more. I mean, like, I'm 'all grown up' at age 49. I'm not "supposed "to be chicken(!)

Anyway, I've (re)taken the first step ...

FWIW, when I had the 'tube test' as you put it (manometry?), the technician sprayed some numbing solution into my throat right at the back. THis helped a lot since I wasn't able to feel the tube so much. I have a pretty sensitive gag reflex, but this trick made the experience tolerable rather than impossible. And that's an IMPORTANT improvement.

As far as food goes, at one point I was drinking quite a bit of 'Ensure'. I recommend it. I found it in the drug store - Target even sells it. IRonically, it is in the same aisle as Slimfast but it is sort of designed to achieve the opposite effect. THere is a higher calorie/higher protein version that is a little tricky to find. Chocolate, vanilla, and I think strawberry!

Occasionally I have a shake from a place called "Jamba Juice". They are a west coast outfit with a few stores here in Chicago. DOn't know if they have expanded east. They publish all the nutritional info for each of their drinks in a guide. I order max. protein and calories. Since you love fruit, you'll love Jamba. Costs just a bit more that a latte, but much better for you.

Hang in there.

Rich

>> Hello, I'm Aileen Monroe, and I've had achalasia for six years now, > since I was twenty. I've been diagnosed via endoscopy, barium > swallow, and that gross tube test, and I've undergone several botox > injections, several balloon dilations, and medications. > Unfortunately, it looks like I'm going to have to have laparascopic > surgery this summer. I'm aspirating regularly, and I've thrown up > some of my food immediately after swallowing (or trying to) it. I'm > feeling very low right now, which is why I searched for and joined a > support group. > > Surprisingly, I find it easier to pop pieces of junk food into my > mouth all day rather than attempt to eat healthy food. I love fruit, > but nothing will go down any longer. I love meat, but that's more of > a struggle than fruit is. I used to live on breads, but that's over > now, too. Consequently, I cannot motivate myself to maintain a > healthy diet. My weight is OK, but I know my body is thirsting for > nutrition. What's worse, I teach high school, so I'm on my feet all > day and only get a twenty-minute break at lunch time. I tried > slimfast drinks, but they're gross. Any recommendations?> > I have to have the three tests all over again in the next month > because my surgeon refuses to do anything until he has seen recent > tests. I hate going through the test with the tubes up the nose and > down into the stomach. Any suggestions on how to deal with that? Is > child labor as bad? If so, maybe I won't have children!> > I'm afraid of the surgery. Have people had it? Is it successful most > of the time? I researched numerous case studies on this surgery and > found some disturbing facts. Perhaps the most unsettling is that it > is not uncommon for surgeons to have to open up patients in the > middle of the operation. I think I'm just petrified because it will > be my first major hospital experience.> > I read the welcome letter and some of the other documents in the > files. I was excited to hear about ways to suppress spasms. Mine > hurt so much. My doctor has me on nifedipine to help with the pain. > I plan to try some of the techniques one of the files offered. > > -Aileen, a 26-year-old from Boston>

[Guest guest]

Dear Rich,

So you're the Achalasian who tried to "escape' from the group and never return. I've heard about people like you. Quincia, presently in China, is another one of you rebels who thinks they can cure or treat this disease without going the surgical route. A person who is afraid of the surgery and would rather not deal with it that way.

Well, let me tell you something. Its not a matter of being "chicken" (your word) to avoid having the surgery, knowing full well as the current technology goes, that you are giving up all your other choices for a cure. You fought a good fight; you kept putting it off for years hoping for, working for a solution.

Now its time to deal with the reality of your situation, as your body is sending you signals loud and clear. You have to face the facts that you have a lot of living ahead of you and as a quality of life decision you are finally facing the fact that the surgery is at this time, and for the foreseeable, your only option.

You have read testimonials from dozens of people here that they were reluctant (as you are) to have the surgery, but as it turned out, they made the right decision, and in some cases realized that they should have done it years earlier. There is no shame here.

Any normal person doesn't say, "Wow, I am so glad I have Achalasia, where can I sign up for the Heller Myotomy?!" It is an invasion of your body, complete with risks involved. But, you have read that over the last 15 years, and especially the last few, those risks have become much less of a factor. The results have improved as have the recovery times. I can't tell you why some people have had repeated myotomies or additional dilatations after the surgeries, but I can tell you that if you go to the best surgeons out there you will further reduce the chances of post surgical problems. I can tell you that there are thousands of Achalasians (the so-called 'silent majority') who have had the surgery and never have the need to post here, or even be aware of this site, because they are fine!

I had my open Heller over 14 years ago, with the kind of recovery I would not wish upon my worst enemy (except for one or two maybe), but I do not resent in any way the kind of surgery there is today and the "revolving door" recovery period (i.e. in one day, out the next). My point is you have no idea how much better it is today than in the past, and you should set your mind to the supposition that you gave it your best shot, but the disease is now getting the best of you, and you do not want any additional deterioration of your esophagus. Let the surgery stop the "deterioration clock" from ticking.

You have probably read some of the posts of some of the younger women here, in their late twenties. (Giselle and a). They read up on the posts, saw the surgery as a reasonable option and decided to get it done. You don't even have to worry about how you will look in a bikini!

Please do not feel ashamed that you are afraid. Fear of having surgery is normal. The fact that you are 49 has no bearing on whether you are too old to have fear of surgery being performed.

I have no doubt that many others in this group will follow with posts in order to boost your confidence. I could list the people here who I know will speak up, since I know their feeling so well.

I will make reference to one person though who will, because she opted for the surgery, not willingly (like you), but got "wet feet" at the last second and needed the support of the group to get her through it, and I am very proud of her. She pulled through the surgery and the recovery period and has now been so very supportive of others facing it like you.

Welcome back, and thanks for opening up on your feelings. You've taken a very important first step. Keep reading the posts here, and we will get you through it too.

> >> > Hello, I'm Aileen Monroe, and I've had achalasia for six years now,> > since I was twenty. I've been diagnosed via endoscopy, barium> > swallow, and that gross tube test, and I've undergone several botox> > injections, several balloon dilations, and medications.> > Unfortunately, it looks like I'm going to have to have laparascopic> > surgery this summer. I'm aspirating regularly, and I've thrown up> > some of my food immediately after swallowing (or trying to) it. I'm> > feeling very low right now, which is why I searched for and joined a> > support group.> >> > Surprisingly, I find it easier to pop pieces of junk food into my mouth all >>day rather than attempt to eat healthy food. I love fruit, but nothing will >>go down any longer. I love meat, but that's more of a struggle than fruit is. >>I used to live on breads, but that's over now, too. Consequently, I cannot >>motivate myself to maintain a healthy diet. My weight is OK, but I know >>my body is thirsting for nutrition. What's worse, I teach high school, so >>I'm on my feet all day and only get a twenty-minute break at lunch time. I >>tried> > slimfast drinks, but they're gross. Any recommendations?> >> > I have to have the three tests all over again in the next month> > because my surgeon refuses to do anything until he has seen recent> > tests. I hate going through the test with the tubes up the nose and> > down into the stomach. Any suggestions on how to deal with that? Is> > child labor as bad? If so, maybe I won't have children!> >> > I'm afraid of the surgery. Have people had it? Is it successful most> > of the time? I researched numerous case studies on this surgery and> > found some disturbing facts. Perhaps the most unsettling is that it> > is not uncommon for surgeons to have to open up patients in the> > middle of the operation. I think I'm just petrified because it will> > be my first major hospital experience.> >> > I read the welcome letter and some of the other documents in the> > files. I was excited to hear about ways to suppress spasms. Mine> > hurt so much. My doctor has me on nifedipine to help with the pain.> > I plan to try some of the techniques one of the files offered.> >> > -Aileen, a 26-year-old from Boston> >>

[Guest guest]

Hi Sonet,

Thanks for sharing your experiences. I'm especially interested in

pregnancy because my husband and I hope to have children in the next

few years. Did you have A when you were pregnant? If you did, had

you already had the surgery?

-Aileen

> >

> > Hello, I'm Aileen Monroe, and I've had achalasia for six years

> now,

> > since I was twenty. I've been diagnosed via endoscopy, barium

> > swallow, and that gross tube test, and I've undergone several

> botox

> > injections, several balloon dilations, and medications.

> > Unfortunately, it looks like I'm going to have to have

> laparascopic

> > surgery this summer. I'm aspirating regularly, and I've thrown

up

> > some of my food immediately after swallowing (or trying to) it.

> I'm

> > feeling very low right now, which is why I searched for and

joined

> a

> > support group.

> >

> > Surprisingly, I find it easier to pop pieces of junk food into

my

> > mouth all day rather than attempt to eat healthy food. I love

> fruit,

> > but nothing will go down any longer. I love meat, but that's

more

> of

> > a struggle than fruit is. I used to live on breads, but that's

> over

> > now, too. Consequently, I cannot motivate myself to maintain a

> > healthy diet. My weight is OK, but I know my body is thirsting

for

> > nutrition. What's worse, I teach high school, so I'm on my feet

> all

> > day and only get a twenty-minute break at lunch time. I tried

> > slimfast drinks, but they're gross. Any recommendations?

> >

> > I have to have the three tests all over again in the next month

> > because my surgeon refuses to do anything until he has seen

recent

> > tests. I hate going through the test with the tubes up the nose

> and

> > down into the stomach. Any suggestions on how to deal with that?

> Is

> > child labor as bad? If so, maybe I won't have children!

> >

> > I'm afraid of the surgery. Have people had it? Is it successful

> most

> > of the time? I researched numerous case studies on this surgery

> and

> > found some disturbing facts. Perhaps the most unsettling is that

> it

> > is not uncommon for surgeons to have to open up patients in the

> > middle of the operation. I think I'm just petrified because it

> will

> > be my first major hospital experience.

> >

> > I read the welcome letter and some of the other documents in the

> > files. I was excited to hear about ways to suppress spasms. Mine

> > hurt so much. My doctor has me on nifedipine to help with the

> pain.

> > I plan to try some of the techniques one of the files offered.

> >

> > -Aileen, a 26-year-old from Boston

> >

>

[Guest guest]

Beverly,

I cannot thank you enough for responding. It's so comforting to hear

from people who go through what I do. NO ONE in my family

understands at all. My husband sure tries to, though! It's also good

to know that childbirth isn't as bad since you end up with a baby at

the end of the process! I really want to have kids, so hopefully all

goes well with A and the surgery.

-Aileen

>

> > Hello, I'm Aileen Monroe, and I've had achalasia for six years

now,

> > since I was twenty. I've been diagnosed via endoscopy, barium

> > swallow, and that gross tube test, and I've undergone several

botox

> > injections, several balloon dilations, and medications.

> > Unfortunately, it looks like I'm going to have to have

laparascopic

> > surgery this summer. I'm aspirating regularly, and I've thrown up

> > some of my food immediately after swallowing (or trying to) it.

I'm

> > feeling very low right now, which is why I searched for and

joined a

> > support group.

> >

> > Surprisingly, I find it easier to pop pieces of junk food into my

> > mouth all day rather than attempt to eat healthy food. I love

fruit,

> > but nothing will go down any longer. I love meat, but that's

more of

> > a struggle than fruit is. I used to live on breads, but that's

over

> > now, too. Consequently, I cannot motivate myself to maintain a

> > healthy diet. My weight is OK, but I know my body is thirsting

for

> > nutrition. What's worse, I teach high school, so I'm on my feet

all

> > day and only get a twenty-minute break at lunch time. I tried

> > slimfast drinks, but they're gross. Any recommendations?

> >

> > I have to have the three tests all over again in the next month

> > because my surgeon refuses to do anything until he has seen

recent

> > tests. I hate going through the test with the tubes up the nose

and

> > down into the stomach. Any suggestions on how to deal with that?

Is

> > child labor as bad? If so, maybe I won't have children!

> >

> > I'm afraid of the surgery. Have people had it? Is it successful

most

> > of the time? I researched numerous case studies on this surgery

and

> > found some disturbing facts. Perhaps the most unsettling is that

it

> > is not uncommon for surgeons to have to open up patients in the

> > middle of the operation. I think I'm just petrified because it

will

> > be my first major hospital experience.

> >

> > I read the welcome letter and some of the other documents in the

> > files. I was excited to hear about ways to suppress spasms. Mine

> > hurt so much. My doctor has me on nifedipine to help with the

pain.

> > I plan to try some of the techniques one of the files offered.

> >

> > -Aileen, a 26-year-old from Boston

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Rich,

This support group definitely helps me feel more comfortable about

the surgery. I'm still terrified that they're going to have to " open

me up. " I guess it'll just be something I have to get over since

it's certainly not something I can control. This certainly is an odd

condition. I've had botox and dilations with no success. It's so

strange that some procedures, foods, and alternate treatments work

for certain people and not others. Hang in there and let me know if

you decide to go forward with surgery plans.

-Aileen

> >

> > Hello, I'm Aileen Monroe, and I've had achalasia for six years

now,

> > since I was twenty. I've been diagnosed via endoscopy, barium

> > swallow, and that gross tube test, and I've undergone several

botox

> > injections, several balloon dilations, and medications.

> > Unfortunately, it looks like I'm going to have to have

laparascopic

> > surgery this summer. I'm aspirating regularly, and I've thrown up

> > some of my food immediately after swallowing (or trying to) it.

I'm

> > feeling very low right now, which is why I searched for and

joined a

> > support group.

> >

> > Surprisingly, I find it easier to pop pieces of junk food into my

> > mouth all day rather than attempt to eat healthy food. I love

fruit,

> > but nothing will go down any longer. I love meat, but that's

more of

> > a struggle than fruit is. I used to live on breads, but that's

over

> > now, too. Consequently, I cannot motivate myself to maintain a

> > healthy diet. My weight is OK, but I know my body is thirsting

for

> > nutrition. What's worse, I teach high school, so I'm on my feet

all

> > day and only get a twenty-minute break at lunch time. I tried

> > slimfast drinks, but they're gross. Any recommendations?

> >

> > I have to have the three tests all over again in the next month

> > because my surgeon refuses to do anything until he has seen

recent

> > tests. I hate going through the test with the tubes up the nose

and

> > down into the stomach. Any suggestions on how to deal with that?

Is

> > child labor as bad? If so, maybe I won't have children!

> >

> > I'm afraid of the surgery. Have people had it? Is it successful

most

> > of the time? I researched numerous case studies on this surgery

and

> > found some disturbing facts. Perhaps the most unsettling is that

it

> > is not uncommon for surgeons to have to open up patients in the

> > middle of the operation. I think I'm just petrified because it

will

> > be my first major hospital experience.

> >

> > I read the welcome letter and some of the other documents in the

> > files. I was excited to hear about ways to suppress spasms. Mine

> > hurt so much. My doctor has me on nifedipine to help with the

pain.

> > I plan to try some of the techniques one of the files offered.

> >

> > -Aileen, a 26-year-old from Boston

> >

>

[Guest guest]

Thanks for your message. It is 'spot on' and what I needed to

hear. I'm grateful your support and the support of others in this

group. It is a 'gift' I can use to help me get where I need to go!

I'm back.

Rich

> > >

> > > Hello, I'm Aileen Monroe, and I've had achalasia for six years

now,

> > > since I was twenty. I've been diagnosed via endoscopy, barium

> > > swallow, and that gross tube test, and I've undergone several

botox

> > > injections, several balloon dilations, and medications.

> > > Unfortunately, it looks like I'm going to have to have

laparascopic

> > > surgery this summer. I'm aspirating regularly, and I've thrown

up

> > > some of my food immediately after swallowing (or trying to)

it. I'm

> > > feeling very low right now, which is why I searched for and

joined a

> > > support group.

> > >

> > > Surprisingly, I find it easier to pop pieces of junk food into

my

> mouth all >>day rather than attempt to eat healthy food. I love

fruit,

> but nothing will >>go down any longer. I love meat, but that's

more of a

> struggle than fruit is. >>I used to live on breads, but that's

over now,

> too. Consequently, I cannot >>motivate myself to maintain a

healthy

> diet. My weight is OK, but I know >>my body is thirsting for

nutrition.

> What's worse, I teach high school, so >>I'm on my feet all day and

only

> get a twenty-minute break at lunch time. I >>tried

> > > slimfast drinks, but they're gross. Any recommendations?

> > >

> > > I have to have the three tests all over again in the next month

> > > because my surgeon refuses to do anything until he has seen

recent

> > > tests. I hate going through the test with the tubes up the

nose and

> > > down into the stomach. Any suggestions on how to deal with

that? Is

> > > child labor as bad? If so, maybe I won't have children!

> > >

> > > I'm afraid of the surgery. Have people had it? Is it

successful most

> > > of the time? I researched numerous case studies on this

surgery and

> > > found some disturbing facts. Perhaps the most unsettling is

that it

> > > is not uncommon for surgeons to have to open up patients in the

> > > middle of the operation. I think I'm just petrified because it

will

> > > be my first major hospital experience.

> > >

> > > I read the welcome letter and some of the other documents in

the

> > > files. I was excited to hear about ways to suppress spasms.

Mine

> > > hurt so much. My doctor has me on nifedipine to help with the

pain.

> > > I plan to try some of the techniques one of the files offered.

> > >

> > > -Aileen, a 26-year-old from Boston

> > >

> >

>

[Guest guest]

Dear Aileen,

I feel that it is better not to fight against your family's inability to understand, but to realise why. If you said you had a broken leg, or flu, something that sounds familiar, they would immediately rally round with support. But they don't know the word "Achalasia". Did YOU? Because it's quite rare, it's not something that's going to be part of many people's vocabulary. So you have to be patient and explain the part which they will understand.

Explain what the word "peristalsis" means. I find it useful to use hand movements to illustrate the muscle contractions that take place in a normal functioning oesophagus and what happens when the food reaches the entrance to the stomach. Explain how you have lost that ability and the nerves have died and won't be coming back and what must be done to help you cope with this new way of eating.

It's a lifetime condition, but it's liveable and if your friends and family can at least half understand what is happening to you, that will help you more than you can imagine.

It's vital to keep your sense of humour. If you saw some of the tricks that I dream up you would laugh your socks off, like running up the stairs, running back down, up again.... my husband doesn't even say anything any more, just thinks I am mad and knows really I am not. What I am saying is that you can lose a lot of the distress if your family understand and are on your side. People have to live with far worse conditions than we do. So do your best to cope.

I hope I have been of some help to you. I truly understand.

With love from Ann in England xxxx> > > > > Hello, I'm Aileen Monroe, and I've had achalasia for six years > now,> > > since I was twenty. I've been diagnosed via endoscopy, barium> > > swallow, and that gross tube test, and I've undergone several > botox> > > injections, several balloon dilations, and medications.> > > Unfortunately, it looks like I'm going to have to have > laparascopic> > > surgery this summer. I'm aspirating regularly, and I've thrown up> > > some of my food immediately after swallowing (or trying to) it. > I'm> > > feeling very low right now, which is why I searched for and > joined a> > > support group.> > >> > > Surprisingly, I find it easier to pop pieces of junk food into my> > > mouth all day rather than attempt to eat healthy food. I love > fruit,> > > but nothing will go down any longer. I love meat, but that's > more of> > > a struggle than fruit is. I used to live on breads, but that's > over> > > now, too. Consequently, I cannot motivate myself to maintain a> > > healthy diet. My weight is OK, but I know my body is thirsting > for> > > nutrition. What's worse, I teach high school, so I'm on my feet > all> > > day and only get a twenty-minute break at lunch time. I tried> > > slimfast drinks, but they're gross. Any recommendations?> > >> > > I have to have the three tests all over again in the next month> > > because my surgeon refuses to do anything until he has seen > recent> > > tests. I hate going through the test with the tubes up the nose > and> > > down into the stomach. Any suggestions on how to deal with that? > Is> > > child labor as bad? If so, maybe I won't have children!> > >> > > I'm afraid of the surgery. Have people had it? Is it successful > most> > > of the time? I researched numerous case studies on this surgery > and> > > found some disturbing facts. Perhaps the most unsettling is that > it> > > is not uncommon for surgeons to have to open up patients in the> > > middle of the operation. I think I'm just petrified because it > will> > > be my first major hospital experience.> > >> > > I read the welcome letter and some of the other documents in the> > > files. I was excited to hear about ways to suppress spasms. Mine> > > hurt so much. My doctor has me on nifedipine to help with the > pain.> > > I plan to try some of the techniques one of the files offered.> > >> > > -Aileen, a 26-year-old from Boston> > >> > >> > >> > >> > >> > >

[Guest guest]

Yes, that's definitely helpful. You're right; I have to be patient

with them. Thanks for your advice! I loved your up and down the

stairs idea. My husband would definitely laugh at me

-Aileen

> > >

> > > > Hello, I'm Aileen Monroe, and I've had achalasia for six

years

> > now,

> > > > since I was twenty. I've been diagnosed via endoscopy, barium

> > > > swallow, and that gross tube test, and I've undergone several

> > botox

> > > > injections, several balloon dilations, and medications.

> > > > Unfortunately, it looks like I'm going to have to have

> > laparascopic

> > > > surgery this summer. I'm aspirating regularly, and I've

thrown up

> > > > some of my food immediately after swallowing (or trying to)

it.

> > I'm

> > > > feeling very low right now, which is why I searched for and

> > joined a

> > > > support group.

> > > >

> > > > Surprisingly, I find it easier to pop pieces of junk food

into my

> > > > mouth all day rather than attempt to eat healthy food. I love

> > fruit,

> > > > but nothing will go down any longer. I love meat, but that's

> > more of

> > > > a struggle than fruit is. I used to live on breads, but

that's

> > over

> > > > now, too. Consequently, I cannot motivate myself to maintain

a

> > > > healthy diet. My weight is OK, but I know my body is

thirsting

> > for

> > > > nutrition. What's worse, I teach high school, so I'm on my

feet

> > all

> > > > day and only get a twenty-minute break at lunch time. I tried

> > > > slimfast drinks, but they're gross. Any recommendations?

> > > >

> > > > I have to have the three tests all over again in the next

month

> > > > because my surgeon refuses to do anything until he has seen

> > recent

> > > > tests. I hate going through the test with the tubes up the

nose

> > and

> > > > down into the stomach. Any suggestions on how to deal with

that?

> > Is

> > > > child labor as bad? If so, maybe I won't have children!

> > > >

> > > > I'm afraid of the surgery. Have people had it? Is it

successful

> > most

> > > > of the time? I researched numerous case studies on this

surgery

> > and

> > > > found some disturbing facts. Perhaps the most unsettling is

that

> > it

> > > > is not uncommon for surgeons to have to open up patients in

the

> > > > middle of the operation. I think I'm just petrified because

it

> > will

> > > > be my first major hospital experience.

> > > >

> > > > I read the welcome letter and some of the other documents in

the

> > > > files. I was excited to hear about ways to suppress spasms.

Mine

> > > > hurt so much. My doctor has me on nifedipine to help with the

> > pain.

> > > > I plan to try some of the techniques one of the files

offered.

> > > >

> > > > -Aileen, a 26-year-old from Boston

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >