Welcome to the newbies

[Guest guest]

In a message dated 4/8/02 7:28:34 AM Eastern Daylight Time, susang@...

writes:

> . I was off-line last week but now I'm back and ready to take

> charge again, and since nobody offered to be moderator, I guess that makes

> me the sole boss.

>

Thank you Sue!!!

Rae

[Guest guest]

Hi As a brand new member, it is helpful to be acknowledged. Of course I

have jumped in, but its kind of like talking to an unknown entity! It is really

great though knowing you are all out there, as it is a lonely disease, its so

rare! Thanks!

Welcome to the " Newbies "

Hello to everyone out there who has recently joined our group. It's a

horrific way for us all to meet; yet it's wonderful to know that you are NOT

alone and you CAN go to someone who understands.

Feel free to jump in with any questions, regardless of what it is......there

is always someone here who can answer.

Chris

greywolf70@...

[Guest guest]

I'm far behind again on my posts, I will try to " catch " up. Just in

case I don't, I wanted to welcome all the new members of the group

and applaud all the graduates in the group!

Dustie, mom to , DOCGrad'03

Texas

[Guest guest]

Hi to all the new members- Ann, , and Dena and I'm sure

there is someone I'm forgetting

I'm sure you'll find the answers to your questions here. These

people know more than the specialists do. As someone mentioned,

this disease is very lonely and no one really understands like

fellow A sufferers. So welcome! You are not alone!

questions about weight: I lost alot of weight before surgery. I

looked like a walking skeleton and I was grey/yellow and terribly

hungry and crabby. You will gain the weight back. I go up and down.

Make sure you get lots of ensure or boost and liquid vitamins.

Cream of wheat and thin veggie soups worked for me. Also alot of

tea and hot chocolate. Fudgecicles were my saving grace.

Eat whatever you can get down. To whoever eats the doritos and pop-

Woo Hoo! good for you. Whatever it takes to keep the wieght on.

surgery: For me I had some complications with too much morphine and

some craziness with the catheter so I was held longer than usual. I

had some intense pain from the air/gas whatever they put in me to

see what they were doing for the lap heller. But the nurses were on

the ball with pain meds every 4 hours and you are so out of it the

first 2 days that nothing matters. Afterward I was sore when I

readjusted myself in bed or moved around. The incision sites were

tender. I was lucky because I have a demerol prescription so I

wasn't left with just t3's. I was off work for 3 weeks which was

perfect and I returned well rested and almost completely healed. I

have great friends who took care of me and cleaned my house and

prepared soft foods for me.

I put vitamin e oil on my scars and you can barely see them now

(four years later).

Wrap or no: I didn't get the wrap and I have to take Nexium every

day or I am very sick and sore with heartburn.

Pain: I experience a pain that is different from the spasm pain,

but not quite in my sternum. More in the back to the left of my les

and up a bit. I take muscle relaxers and demerol because it is a

debilitating pain. For the spasms, many people find chugging water

and heat pads help. I still get alot of spasms and I use alot of

heat bags on my chest over my e.

What else? I think thats it. I am open to more questions as they

arise.

I think it was Dena who said she feels like she has to hide it. I

understand. You just want to go out to a restaraunt and feel

normal. I hated explaining my weight loss and sudden leaps from the

table to the bathroom. People either thought I was pregnant or

anorexic. It's hard. Nobody really gets the extent of our

difficulties. I explain the coles notes version and people are

pretty understanding.

To the newbies who are dealing with regurgitation: take an empty

paper coffee cup everywhere with you and keep a plastic garbage can

close by. Oh, and when at a restaraunt, I still look for the

bathroom as soon as I enter.

Now, having said all that...Know that there is hope. It does get

better and after the surgery you can eat pretty much anything you

want. I can eat anything now. I still get pain sometimes if I get

carried away and eat pizza and meat and thick bread, but I do it

anyway because I'm stubborn! Read back over past posts as you have

the time and you will learn alot. There are good people here to

help you and offer support and it's a great place to vent. Take

care and good luck swallowing.

Kat

> Hi, I am new to the group and want to introduce myself and share

my

> story of " A " with you. But first, I would like to let you

> know how blessed I feel to have found this group – you are an

> amazing

> group of people and have already helped me through your previous

> posts and strong words of encouragement to other members of this

> group.

>

> I joined the board a few weeks ago and have been reading posts and

> all the information I could get my hands on about achalasia. Here

> is an abbreviated version of my story, although still quite

> long. . . I am 37 years old and was diagnosed in 2001 with

achalasia

> and a stricture at s Hopkins. I received a dilation for the

> stricture (slightly different than a dilation for " A " ) and

> botox.

> The botox lasted about 1 year – I know that I am lucky for the

> length it lasted. When my symptoms started to reappear, I managed

> with the traditional ways . . . drinking lots of water with meals,

> eating small amounts, avoiding certain foods, etc. Then, back in

> July of this summer, it started to get really bad. I moved a few

> years ago, so I had to find new doctors in my area familiar with

> achalasia, which took some time. I first consulted with a GI who

> wanted to do Botox. If I had not come across this group and

learned

> from your experiences and the stories that you shared, I would

have

> had more Botox – the dr. never even presented the option of

> surgery

> or dilation. I had so much information from this board that I was

> aware that it wasn't the best choice for my situation and as a

> result, went for another consult and found a great team of

doctors.

> Thanks to all of you!!!

>

> I had a barium swallow, EGD and manometry in August and the GI

> highly recommended surgery based on my results and symptoms. I

> consulted with a surgeon in the area (Charlotte, NC) who has a

> great deal of experience performing a LAP w/wrap. He actually

> trained at the Cleveland Clinic and has a great deal of expertise

> with A.

>

> I am now to the point where I can barely eat and drink anything.

I

> have lost approximately 12 pounds in 2 months (7 lbs in the last 3

> weeks) which is A LOT for me. I am 5'7 " and currently only

> weigh

> 103 pounds. I am so scared that I am going to get below 100 lbs.

> before my surgery. My surgery is schedule for next Tuesday,

> September 20th. I am very nervous and anxious, but know that it

is

> my only option.

>

> As I have read on this group, this disease is very lonely. I have

a

> wonderful husband and daughter (6years old), but it is amazing how

> certain friends who you think that you were so close to back

away.

> I do have many friends that have been so supportive and

> understanding, yet no one can comprehend how difficult and painful

> this is (only this group!)… I am so hungry and tired, but I am

> also

> optimistic that after the surgery I will be able to eat and start

to

> get back into a somewhat " normal " routine.

>

> I do have a few questions that I would greatly appreciate your

> advice on:

>

> 1. Should I expect to loose more weight after the surgery?

> 2. How painful is this surgery compared to other surgeries (if

> you have had others)

> 3. How long is the recovery? – more importantly how long does

> the intense pain last? (can you tell that I am worried about the

> pain – I am a wimp with no tolerance for pain)

> 4. I have seen so much information about wrap vs. no wrap, but

> what seems to be the consensus of this topic– at least on this

> board.

> 5. Does anyone experience pain in the sternum area? - it is

> sore to the touch and even when not touched. It located where the

> LES is - approximately. This pain is different then spasms -

> unfortunately, I have those as well.

>

> Any advice or other info that you would like to share would be

great!

>

> Again, I look forward to being a part of this group and thank you

in

> advance for your time and advice!

>

> Best regards,

> Diane