Achalasia

[Guest guest]

Hello all here..thought i would let you all know that i am home and

resting. I am doing quite good they tell me. My operation seems to have

worked so far. I can't eat alot yet but surgeon said that would pass and

i would be able to eat almost normal amounts of food once my stomach and

E have healed and i am able to stretch them some with out pain. My

surgery was only to be 2 hours long and ended up 4 hours. He had to

remove part of my E that was badly damaged from the last surgeon and

bring my stomach up some. So now my E is shorter. He also biopsies a

portion to make sure it was Achalasia and it came back that it was, told

me very rare for a young woman to have it..especially since i have had it

since i was little. My incision is from the breast bone to my belly

button the top portion is healing nicely..the bottom 2 inches has been

left open to heal from the inside out...I had a large blood clot that

wanted to form behind the incision and this gives every thing a place to

drain instead of putting in a drain tube. I have a nurse that comes to my

house 2 times a day to change my dressing and it also has be packed with

gauze about2 1/2 inches up inside the incision. He said that this is

something that happens alot so not to be alarmed..will just take a little

more care and time to heal. I can't lift anything with out it

pulling...so i don't as not to cause a hernia. I will be going back in 8

weeks for a check up with my surgeon. He has done a good job..and was

very cautious with me with anything going down my throat. I awoke with a

chest tube, monitors, a central IV in my neck..(from malnutrion they

couldn't get other good veins), a NG tube in my nose (that was the

worst), 2 very small iv's and a catheter. I thought i was wired for

sound. Each day a little more came off as i got stronger. By the 4th day

in the hospital (spent a total of 8 days there) I was able to get out of

bed and go for a walk outside with help. I am able to do just about

everything now, just no lifting or driving yet..still tired but feeling

better each day. I no longer have food get caught, no white foam, and

most importantly no regurgitation at night time. It was an awful

experience..felt like i was run over by a truck for about 3 days...but

more then worth it i feel so much better now and know that i will feel as

good as new in about a month. I am to follow a strict diet for 2 months,

it is an anti reflux diet, no acidy stuff, no beef, no bread, no

caffeine, and all soft foods. After the check up i will be able to eat

anything that i want. I got an honest answer about future prognosis.

Since i am so young and have had two surgeries now...if a third is needed

it will be to remove my E. Since he had to do so much reconstruction this

time. As i said earlier part of my E and part of my stomach where removed

to make the lower sphincter larger. If any of you have any questions

about the open procedure just ask me. I would be happy to tell you more.

Indiana

PS my surgery was done at the Cleveland Clinic, Cleveland OH by Dr.

Rice. Head of Thoracic Surgery

[Guest guest]

Hi ,

Welcome home and well done. Sounds like you had to have a big job done, but as

you say, it is all

for the better. Take it nice and easy and recuperate well, then all will be

good for the future.

It will take a while to recover your strength. I know, I had to do that 26

years ago, and didn't

have an ounce of fat on me from malnutrition, so I know what you are going

through. As the food

gets through and your body can start making some insulation and padding again,

you'll hurt less. I

remember (dully now) how every move I made during the first little while pulled

my scars (I had a

drainage tube scar as well as the full cut like you had) but it is so worth it

in the end.

Hopefully you will be able to have a trouble free future now.

Do you know if any of your oesophagus doesn't work? Will you have to wash food

into your stomach

with fluid? I do, that's why I ask. I'm just wondering if your achalasia

includes not having

peristalsis for any part of your oesophagus?

Lynette in Australia

Re: Achalasia

Hello all here..thought i would let you all know that i am home and

resting. I am doing quite good they tell me. My operation seems to have

worked so far. I can't eat alot yet but surgeon said that would pass and

i would be able to eat almost normal amounts of food once my stomach and

E have healed and i am able to stretch them some with out pain. My

surgery was only to be 2 hours long and ended up 4 hours. He had to

remove part of my E that was badly damaged from the last surgeon and

bring my stomach up some. So now my E is shorter. He also biopsies a

portion to make sure it was Achalasia and it came back that it was, told

me very rare for a young woman to have it..especially since i have had it

since i was little. My incision is from the breast bone to my belly

button the top portion is healing nicely..the bottom 2 inches has been

left open to heal from the inside out...I had a large blood clot that

wanted to form behind the incision and this gives every thing a place to

drain instead of putting in a drain tube. I have a nurse that comes to my

house 2 times a day to change my dressing and it also has be packed with

gauze about2 1/2 inches up inside the incision. He said that this is

something that happens alot so not to be alarmed..will just take a little

more care and time to heal. I can't lift anything with out it

pulling...so i don't as not to cause a hernia. I will be going back in 8

weeks for a check up with my surgeon. He has done a good job..and was

very cautious with me with anything going down my throat. I awoke with a

chest tube, monitors, a central IV in my neck..(from malnutrion they

couldn't get other good veins), a NG tube in my nose (that was the

worst), 2 very small iv's and a catheter. I thought i was wired for

sound. Each day a little more came off as i got stronger. By the 4th day

in the hospital (spent a total of 8 days there) I was able to get out of

bed and go for a walk outside with help. I am able to do just about

everything now, just no lifting or driving yet..still tired but feeling

better each day. I no longer have food get caught, no white foam, and

most importantly no regurgitation at night time. It was an awful

experience..felt like i was run over by a truck for about 3 days...but

more then worth it i feel so much better now and know that i will feel as

good as new in about a month. I am to follow a strict diet for 2 months,

it is an anti reflux diet, no acidy stuff, no beef, no bread, no

caffeine, and all soft foods. After the check up i will be able to eat

anything that i want. I got an honest answer about future prognosis.

Since i am so young and have had two surgeries now...if a third is needed

it will be to remove my E. Since he had to do so much reconstruction this

time. As i said earlier part of my E and part of my stomach where removed

to make the lower sphincter larger. If any of you have any questions

about the open procedure just ask me. I would be happy to tell you more.

Indiana

PS my surgery was done at the Cleveland Clinic, Cleveland OH by Dr.

Rice. Head of Thoracic Surgery

[Guest guest]

, congratulation! It is behind you and I am so happy that

the surgery was a success and you are on your way to recovery.

What a blessing this is after all you have been through.

Keep us updated and you continue to have my prayers.

MaggWho

Alabama

[Guest guest]

Dear ,

Thank you for the update, my thoughts have been with you. I'm so

glad you are feeling better. It sounds like you found a wonderful

surgeon who truly is an artist. I haven't had surgery yet, but as

you have faced the last ordeal the rest have us have gained strength

and hope.

Sandy

[Guest guest]

Hi , so glad to hear you are recovering well. We were all thinking of you and knew you would make it. Great! Keep up the high sprits and you will persevere. Keep us posted, please. You had a real tough one. You deserve a medal. Bev.

[Guest guest]

Good to hear from you .

Thanks for the in-depth message about your surgery.

Oh... that's something that I had not seen discussed:

WHITE FOAM.. I'm always frothing at the mouth. I didn't

realize it was associated with A...!

Take it slow.... as long as your eating nutrient rich foods,

you'll be just fine. Now's a good time to get healthly.

[Guest guest]

In a message dated 10/8/02 4:19:32 AM Pacific Daylight Time, whattamanly@... writes:

Nonato

Hi Nonato (and all)

I tried the water-therapy idea after reading your post.

It was too painful for me. My Sphincter did not open

and I had to cough it all up. It actually was a scary

experience. I thought I would pass out. Shucks!!

[Guest guest]

Don't be sorry. This is a learning experience for us all. I've had A for 30 years!!! I haven't conquered

it yet. I've tried several little tricks and trials, sometimes

they work sometimes not.

Tell me exactly how you do it (maybe I was too eager?)

Do you: take a bite, chew, swallow, then drink water?

Or do you wait to see if the mouthful goes in first?

The way I tried it: I had eaten and about 1/2 hour later

was still dealing with the "floaties". I was at work and decided to drink a glass of water to push it through.

I gulped the glass and it became painfully apparent that

it was not going down. My esophagus was so full that I thought it would pop. The fluids/food came up to my throat and seemed to cut off my air way. I had to run

to the bathroom and cough it up. It was really scary.

If there is a BETTER way... please share!

[Guest guest]

Lynette,

I still have some perstalisis left but not much. But for the most part

yes have to wash food down. Thanks i will take it easy.

Indiana

[Guest guest]

Hi -

Just noting that the white foam has been discussed here. It is not

an uncommon achalasia problem.

I spit up a bunch of white foam during my manometry test a few years

ago and the doctor didn't comment overly much about it.

I asked him recently about the foam since mine was recurring a bit,

and he said it is common for Achalasia patients and he thinks it is

saliva that is caught in the esophagus for a long time and it gets

foamy from being stuck there with whatever paristalsis that is

actualy going on.

I tend to get mine when I haven't eaten or drank much for a while - I

think food and drink washes the saliva down and so it doesn't sit

around to get foamy.

One poster here, however, said her daughter with " A " had white foam

of some sort and was told she had a fungal infection related to food

decomposing withn the esophagus. However, many of us have had the

white foam without trouble.

Jennlee_2 in WI

> Good to hear from you .

> Thanks for the in-depth message about your surgery.

>

> Oh... that's something that I had not seen discussed:

> WHITE FOAM.. I'm always frothing at the mouth. I didn't

> realize it was associated with A...!

>

> Take it slow.... as long as your eating nutrient rich foods,

> you'll be just fine. Now's a good time to get healthly.

>

>

[Guest guest]

Hi Lynette. You are right! It's good to talk to people about this disease ... people who know

what I'm talking about. I have tried taking deep breaths push my lungs

against the esophagus... I've raised my arms

over my head (except when around outsiders)...

I've shifted my body to enlongate my esophagus...

sometimes these "method" work, sometimes not.

I will try the "water therapy" idea.

I'll let you all know my results.

[Guest guest]

Hi ,

The way I eat is as follows:  Chew, swallow, drink one mouthful of

water.  Occasionally it takes a bit to

move it, so you wait until it has moved, or have another mouthful of liquid to

help it along the way.  Things like

sitting up straight while eating helps a great deal and I have learned helpful “moves”

to aid difficult mouthfuls (perhaps I chewed off too big a bite or

something).  I take a deep breath

(without drawing attention to myself) and sometimes you can kind of push your

chest in from the sides with gentle arm movements slowly pushing on the side of

your chest in an attempt to make the oesophagus receive pressure.  This probably sounds odd, but I guess I just

do these things, like wriggling a bit in the upper body and the breathing which

just tries to make things move inside to let the food drop down. 

The pain you mention when liquid

hits the top of a block of food which is stuck is so unbelievably intense that

I learned this method of a mouthful of liquid after every mouthful of food very

early in my condition.  I now very

rarely have any blockages.  I also found

that it just doesn’t move it down unless the blockage is only small, and

perhaps you can get past the pain as it slowly gives way and ‘whooshes’ into

your stomach.  What a relief that

is.  But I also learned during my

process of onset (before diagnosis) that I could help the food to come back out

when it hit a closed sphincter, so if I get into blockage trouble, I try to get

my body to expel the blockage back out. 

It is much less painful, and as I said, because I’ve developed a good

and satisfactory way of eating (mouthful of food followed by mouthful of

liquid) it is very rare that I get a blockage now.  It is usually when I get so distracted that I forget to have the

liquid before another mouthful of food.

On blockages, I guess everyone knows

that food should not be allowed to sit in your oesophagus for any time as it

can lead to many problems including forming a permanent pocket for food to get

trapped and can cause more serious problems like cancers.  This was another reason I don’t allow food

to stay there, besides the horrible discomfort of it being stuck.  My food just does not go down further than

halfway because I have no peristalsis in the bottom half of my oesophagus, so

this was the reason I began drinking - to move it!

Hope this helps you a bit

.  I’ve lived this way for 26

years now using this method.  I had my Hellers

myotomy that long ago after rapid onset of the disease over 10 months.  The operation saved my life, there was no

other way I would have survived except on a permanent drip.  I’m so grateful to finally be able to talk

to others about life with Achalasia.  I’ve

never met anyone with the disease before this group a month or so ago.  It is so good to not be alone anymore.

Lynette in Australia

-----Original

Message-----

From: kathiode@...

[mailto:kathiode@...]

Sent: Wednesday, 9 October 2002

14:32

achalasia

Subject: Re: Achalasia

Don't

be sorry. This is a learning experience for

us all. I've had A for 30 years!!! I haven't conquered

it yet. I've tried several little tricks and trials, sometimes

they work sometimes not.

Tell me exactly how you do it (maybe I was too eager?)

Do you: take a bite, chew, swallow, then drink water?

Or do you wait to see if the mouthful goes in first?

The way I tried it: I had eaten and about 1/2 hour later

was still dealing with the " floaties " . I was at work and

decided to drink a glass of water to push it through.

I gulped the glass and it became painfully apparent that

it was not going down. My esophagus was so full that I

thought it would pop. The fluids/food came up to my

throat and seemed to cut off my air way. I had to run

to the bathroom and cough it up. It was really scary.

If there is a BETTER way... please share!

Your use of

is subject to the

Terms of Service.

[Guest guest]

,

I think you are correct about the white foam thing! I haven't seen anything

on it (even in articles written on it). I have that quite often too. I

always tend to have the foam happening when I eat something acidy like fruits

or have carbonated drinks, which I have eliminated from my diet like so many

other things!. That's when I notice it the most. It just seems to rush up

my E. I wonder how many people with A in this group have had the foam thing?

[Guest guest]

, and others.....

As we have said a few times .... spend some time looking back through the old posts. You are correct in that it has not been mentioned for a while.

What you are incorrect about is that it has never been mentioned! It has lots of times and as I said and others have said look back at what others have said in the past. That way you might get some help or ideas that you won' t get now as those members might not post anymore.

Hope it helps.

Chris

[Guest guest]

In a message dated 10/10/02 5:40:00 PM Central Daylight Time, chumpa96@... writes:

:

I also get the white foam at night. My doctor said it

was water mixed with air and causes it. I don't drink

water or eat anything after 4:00 p.m. which does help.

Good Luck,

Marilyn

Thank you Marilyn. It would be kinda hard for me to not eat anything after 4pm. I get off work at 4. The whole time I'm at work I try only to eat the "safe" foods or the ones I can handle ok. So that means I don't eat a whole lot until I get home and I end up basically regurgitating all night.

I had THE worst night last night. I threw up at least 25 -30 times and still couldn't get it to open up and let water through. I was so exhausted I gave up and went to bed with food still in my E. I woke up 3 times last night choking! This morning it was still clogged. I have never had a night like that. It takes so much outa you! I think I need to take your advice and limit my eating in the evenings.

P.S. I see my surgeon on Tuesday for further diagnostic testing. I know he'll send my for another manometry (yuck!) Wish me luck!!

Dean

[Guest guest]

Hi Dean.

Vomiting is the worse!! The muscle does not open 95% of

the time. It takes me all night to expel the contents. I too

am worn out to exhausion. Where oh where is a cure?

[Guest guest]

Hi

I'm sorry to hear that you are one of the more unfortunate ones like myself. I too suffer greatly and wonder if this is all there is for the rest of my life. I really do sympathise.

Regards

Lynn

[Guest guest]

Hi, I am a new member of the achalasia grouop, I went through many

years of the pain, and then came the time when I could not swallow anything,

even water. After an exploratory exam, my doctor said " until I have the

surgery to cut the muscles away from my esphagus, I should drink sparkling

beverages before each bit of food. Now I am eating everything, and for

twoyears have avoided the surgery. I hope to continue eating without the

surgery. I wanted to passthis on, as NO doctors I talked to for years hada

given me this information. Hope it helps you. Marilyn

[Guest guest]

Hi, I am a new member of the Achalisia group, and I have suffered for many

years. I am told I have one of the most advanced cases they have ever seen.

I have gone throughthe pain, the endoscopy etc.etc. and only recently was

told by my doctor to sip carbonated beverage before each bite of food. Guess

what? It was a miracle. I have now been eating everything, steak, roasts,

etc. without a problem after not even being able to swallow. When I found

out that almost NO doctors knew that the sipping of carbonation triggers the

esophagus to open, I couldn't believe it. Please tryit. It is keeping me

from having to have the surgery too " cut " the muscles away from my esophagus.

Marilyn

[Guest guest]

Hi Sherrie;

How awful you both must be feeling right now. I had some relief with my first open myotomy, but it wasn't immediate either. I think the internal swelling has a lot to do with not being to eat right away. I hope this problem is only temporary and your husband improves very soon. Please let us know what the Doctor says on Tuesday. I hope you get the good news that you are hoping for.

All the best, .

-- achalasia

Well its been 8 days since heller myotomy and my husband is not any better to me. He still spitting up foam for 3 days. The doctor put him on phenegran for nausea so now he is out of it all day but not throwing up. I am out of mind with worry. He has a follow up appt. with surgeon Tues. Maybe he can shed some light on this disease. Still just on liquids. Hope to get some good news.