Still Suffering

[Guest guest]

Still Suffering

Hi - just read your posting and my heart goes out to you. I can feel

your suffering. I was there three years ago before surgery and in the end I

basically lived on food supplements such as Ensure or Boost. I would have

four or five tins a day which gave me the nutrition I needed as I could

little else except soup, puddings, custards Even that was difficult and I

practically sat up all night so as not to have the reflux happening. All

that has disappeared since I had the myotomy and funduplication. I also had

a small hiatal hernia which was causing the acid reflux a/o heartburn. This

was repaired at the same time so I no longer suffer from that.

You have not mentioned surgery - has that been suggested to you? After 8

months of suffering and losing 35 lbs. I went for the surgery and did not

try anything else as I was told it would be a band-aid solution and in the

end I would still have to have the surgery. I would find a good Thoracic

Surgeon and see what he has to stay. I hope you get some answers soon.

All the best................, Vancouver Canada

Hi; I have written to the group over the past year, still suffering.

My first ballooning at U of M helped me a great deal 8 months ago,

but my awful symptoms which most of you write about and experience

are back again, full force, even worse! I was ballooned again three

weeks ago, and am suffering from more attacks, not being able to

swallow, pain in the chest from the pressure, gurrgling,burping, gas,

and discomfort. I am up two to three times a night as well from the

severe acid reflux which we know is not that, but the juices coming

up from the trapped food that has spoiled, and that causes severe

heartburn, that nothing seems to help. I have been on heavy doses of

achiphex, and pepcid ad 40 mg. at night before bedtime, but I might

as well be taking zero, I swear it is worse, and I am really upset

now. Most of the time I can deal with it, but anything I eat now

bothers me, gets stuck, and when I try hot it does nothing. If I

choose soda to help me belch it down, that seems to be the only thing

to relieve the pressure of the food to go down. SOmeone suggested the

Cleveland Clinic and to see another dr. there. I also was seen by a

thoracic surgeon who told me drink a lot of warm water for the

spasms, they are like a charlie horse in the leg. IT has done little.

The tums, milk of magnesia, take away the heartburn after hours of

pain. I dont even know what to eat any more I am so distressed and

uncomfortable. If any of you can help me with what you find to help,

please email me, I am about desperate now.I spent the whole entire

week end in the house, disabled from all nights of heartburn that

left me sore and tired, and spent. I am eating half of whatever is

soft now, and very little. Dialation is not going to help me any

longer, I have been scoped, had all the tests, and have definately

been confirmed with achalasia for the past year.After complaining

about it also for a long time not being able to swallow, my internist

finally listened to me. I do find that sometimes stress will bring

on the acid, it could be my imagination, but I think that upsets the

acid and it starts to make my esophagus react. I have had to quit

real estate due to the stress and pressure, and have gone back to

subbing elementary school a couple days a week which helps keep me

busy. Most of the time I can get by, but this past week end was

horrible, in fact, the past two week ends were. At times my husband

gets perplexed and suggests maybe a tranquilizer would help me. It is

hard on him,and on my 84 yr. old Mother too to see me so

uncomfortable. What foods can we eat? NO ONE has given me a list of

what to stay away from. I know meat is gone for me, popcorn is a no

no, (I tried it and paid for it), chocolate seems to get me very sick

now and once I ate it all the time, I am off sugar products, and try

to eat a lot of soups to get my nourishment. Juices are a no no, and

I am finding wine and coffee very irritating as well. PLEASE help me

someone, you guys are the only ones who can help us, the doctors dont

know what we go through one bit, and only treat it medically. Thanks,

[Guest guest]

>

> Still Suffering

> Hi - just read your posting and my heart goes out to you. I can feel

> your suffering. I was there three years ago before surgery and in the end I

> basically lived on food supplements such as Ensure or Boost. I would have

> four or five tins a day which gave me the nutrition I needed as I could

> little else except soup, puddings, custards Even that was difficult and I

> practically sat up all night so as not to have the reflux happening. All

> that has disappeared since I had the myotomy and funduplication. I also had

> a small hiatal hernia which was causing the acid reflux a/o heartburn. This

> was repaired at the same time so I no longer suffer from that.

> You have not mentioned surgery - has that been suggested to you? After 8

> months of suffering and losing 35 lbs. I went for the surgery and did not

> try anything else as I was told it would be a band-aid solution and in the

> end I would still have to have the surgery. I would find a good Thoracic

> Surgeon and see what he has to stay. I hope you get some answers soon.

> All the best................, Vancouver Canada

Hi ,

I tried emailing you off list, but it bounced back twice. If you would like

someone to talk to, email me off list and I'll send you my phone number in

Houston, or write back to you. I'm so sorry that you are suffering so. I was

just as you describe before my myotemy, but am one year out of surgery now, and

my life is normal again. I so understand what you are going through.

in Houston

>

> Hi; I have written to the group over the past year, still suffering.

> My first ballooning at U of M helped me a great deal 8 months ago,

> but my awful symptoms which most of you write about and experience

> are back again, full force, even worse! I was ballooned again three

> weeks ago, and am suffering from more attacks, not being able to

> swallow, pain in the chest from the pressure, gurrgling,burping, gas,

> and discomfort. I am up two to three times a night as well from the

> severe acid reflux which we know is not that, but the juices coming

> up from the trapped food that has spoiled, and that causes severe

> heartburn, that nothing seems to help. I have been on heavy doses of

> achiphex, and pepcid ad 40 mg. at night before bedtime, but I might

> as well be taking zero, I swear it is worse, and I am really upset

> now. Most of the time I can deal with it, but anything I eat now

> bothers me, gets stuck, and when I try hot it does nothing. If I

> choose soda to help me belch it down, that seems to be the only thing

> to relieve the pressure of the food to go down. SOmeone suggested the

> Cleveland Clinic and to see another dr. there. I also was seen by a

> thoracic surgeon who told me drink a lot of warm water for the

> spasms, they are like a charlie horse in the leg. IT has done little.

> The tums, milk of magnesia, take away the heartburn after hours of

> pain. I dont even know what to eat any more I am so distressed and

> uncomfortable. If any of you can help me with what you find to help,

> please email me, I am about desperate now.I spent the whole entire

> week end in the house, disabled from all nights of heartburn that

> left me sore and tired, and spent. I am eating half of whatever is

> soft now, and very little. Dialation is not going to help me any

> longer, I have been scoped, had all the tests, and have definately

> been confirmed with achalasia for the past year.After complaining

> about it also for a long time not being able to swallow, my internist

> finally listened to me. I do find that sometimes stress will bring

> on the acid, it could be my imagination, but I think that upsets the

> acid and it starts to make my esophagus react. I have had to quit

> real estate due to the stress and pressure, and have gone back to

> subbing elementary school a couple days a week which helps keep me

> busy. Most of the time I can get by, but this past week end was

> horrible, in fact, the past two week ends were. At times my husband

> gets perplexed and suggests maybe a tranquilizer would help me. It is

> hard on him,and on my 84 yr. old Mother too to see me so

> uncomfortable. What foods can we eat? NO ONE has given me a list of

> what to stay away from. I know meat is gone for me, popcorn is a no

> no, (I tried it and paid for it), chocolate seems to get me very sick

> now and once I ate it all the time, I am off sugar products, and try

> to eat a lot of soups to get my nourishment. Juices are a no no, and

> I am finding wine and coffee very irritating as well. PLEASE help me

> someone, you guys are the only ones who can help us, the doctors dont

> know what we go through one bit, and only treat it medically. Thanks,

>

>

>

>

>

>

>

[Guest guest]

,

I'm so sorry to hear you are suffering so. I too have been there but

it's been about five years now since I've had it that bad. You

mentioned that the heartburn medicenes don't work for you. They

never worked for me either, however, I have found that anti-gas

medicenes work great for me. I like Maalox or Mylanta the best. I

used to swallow alot of air before my surgery which in turn (at

least in my case) would cause the painful spasms in my chest. I know

there are alot of other medications such as the L-Arginine and

Procardia that help relax the esophagus.I have never tried these

medications myself but maybe they would be helpful for you.(but

check with your doctor first). As for the warm water, it's funny, I

couldn't get water down at all back then, warm or cold, but warm

sweetened tea always worked like a charm for me. I had the myotomy

with a partial wrap six months ago and I am feeling GREAT!!!!!

I hope you find something that works for you. I know those nights

can get miserable. Take Care.

Sandi in California

---

In achalasia@y..., " ler1027 " <ler1027@y...> wrote:

> Hi; I have written to the group over the past year, still

suffering.

> My first ballooning at U of M helped me a great deal 8 months

ago,

> but my awful symptoms which most of you write about and experience

> are back again, full force, even worse! I was ballooned again

three

> weeks ago, and am suffering from more attacks, not being able to

> swallow, pain in the chest from the pressure, gurrgling,burping,

gas,

> and discomfort. I am up two to three times a night as well from

the

> severe acid reflux which we know is not that, but the juices

coming

> up from the trapped food that has spoiled, and that causes severe

> heartburn, that nothing seems to help. I have been on heavy doses

of

> achiphex, and pepcid ad 40 mg. at night before bedtime, but I

might

> as well be taking zero, I swear it is worse, and I am really upset

> now. Most of the time I can deal with it, but anything I eat now

> bothers me, gets stuck, and when I try hot it does nothing. If I

> choose soda to help me belch it down, that seems to be the only

thing

> to relieve the pressure of the food to go down. SOmeone suggested

the

> Cleveland Clinic and to see another dr. there. I also was seen by

a

> thoracic surgeon who told me drink a lot of warm water for the

> spasms, they are like a charlie horse in the leg. IT has done

little.

> The tums, milk of magnesia, take away the heartburn after hours of

> pain. I dont even know what to eat any more I am so distressed and

> uncomfortable. If any of you can help me with what you find to

help,

> please email me, I am about desperate now.I spent the whole entire

> week end in the house, disabled from all nights of heartburn that

> left me sore and tired, and spent. I am eating half of whatever is

> soft now, and very little. Dialation is not going to help me any

> longer, I have been scoped, had all the tests, and have definately

> been confirmed with achalasia for the past year.After complaining

> about it also for a long time not being able to swallow, my

internist

> finally listened to me. I do find that sometimes stress will

bring

> on the acid, it could be my imagination, but I think that upsets

the

> acid and it starts to make my esophagus react. I have had to quit

> real estate due to the stress and pressure, and have gone back to

> subbing elementary school a couple days a week which helps keep me

> busy. Most of the time I can get by, but this past week end was

> horrible, in fact, the past two week ends were. At times my

husband

> gets perplexed and suggests maybe a tranquilizer would help me. It

is

> hard on him,and on my 84 yr. old Mother too to see me so

> uncomfortable. What foods can we eat? NO ONE has given me a list

of

> what to stay away from. I know meat is gone for me, popcorn is a

no

> no, (I tried it and paid for it), chocolate seems to get me very

sick

> now and once I ate it all the time, I am off sugar products, and

try

> to eat a lot of soups to get my nourishment. Juices are a no no,

and

> I am finding wine and coffee very irritating as well. PLEASE help

me

> someone, you guys are the only ones who can help us, the doctors

dont

> know what we go through one bit, and only treat it medically.

Thanks,

>

[Guest guest]

Hi ,

this is Tanja from the Achalasia group, replying to your recent post.

I have Achalasia for over 10 years and can really feel with you.

1. There is help out there. Find a good GI doctor who is experienced

with treating Achalsia. This might be difficult, but call around, ask

your insurance for help, ask this group (let us know where you are).

There are options like medication, surgery. The Heller Myotomy for

example has ended my 10 year suffering with " A " .

2. The pain you are experiencing at night might not be reflux, but

the very painfull cardio-spasmns. L-Arginine (available at GNC) has

reduced my spasmns greatly. Discuss this with your doctor (only a

doctor with lots of " A " experience will know what you are talking

about), who can also prescribe some stonger pain medication. Sipping

on ice-water and snacking on saltine crackers gets me through the

worst episodes. Caffein also seems to help during a spasm.

3. To reduce nighttime discomfort, you probably sleep already with

your head ellevated (couple of pillows,...). Eat your last meal as

early as possible to give the food as much time as possible to get

down. Obviously, keep it as plain and mild as possible. After dinner,

drink clear liquids (I just drink plain water), to wash the food down

as much as possible. Actually, when my food was really stuck in the

late evening, the water would actually sometimes bring it back up.

This is disgusting, but a good night's rest beats waking up three

times a night choking.

4. No, in my experience, there is no magic food which " triggers "

problems or help avoid them. Alcohol and coffee made it worse for me,

chocolate helped, but this is different for everybody, and may change

over time.

5. No, Prosac did not help me at all. And no, it is not all in your

head! The nerves in your esophagus are not working propperly, no

matter what other people say.

Feel free to E-mail me directly at tbeshear@...

Best wishes, Tanja, California,

> Hi; I have written to the group over the past year, still

suffering.

> My first ballooning at U of M helped me a great deal 8 months ago,

> but my awful symptoms which most of you write about and experience

> are back again, full force, even worse! I was ballooned again three

> weeks ago, and am suffering from more attacks, not being able to

> swallow, pain in the chest from the pressure, gurrgling,burping,

gas,

> and discomfort. I am up two to three times a night as well from the

> severe acid reflux which we know is not that, but the juices coming

> up from the trapped food that has spoiled, and that causes severe

> heartburn, that nothing seems to help. I have been on heavy doses

of

> achiphex, and pepcid ad 40 mg. at night before bedtime, but I might

> as well be taking zero, I swear it is worse, and I am really upset

> now. Most of the time I can deal with it, but anything I eat now

> bothers me, gets stuck, and when I try hot it does nothing. If I

> choose soda to help me belch it down, that seems to be the only

thing

> to relieve the pressure of the food to go down. SOmeone suggested

the

> Cleveland Clinic and to see another dr. there. I also was seen by a

> thoracic surgeon who told me drink a lot of warm water for the

> spasms, they are like a charlie horse in the leg. IT has done

little.

> The tums, milk of magnesia, take away the heartburn after hours of

> pain. I dont even know what to eat any more I am so distressed and

> uncomfortable. If any of you can help me with what you find to

help,

> please email me, I am about desperate now.I spent the whole entire

> week end in the house, disabled from all nights of heartburn that

> left me sore and tired, and spent. I am eating half of whatever is

> soft now, and very little. Dialation is not going to help me any

> longer, I have been scoped, had all the tests, and have definately

> been confirmed with achalasia for the past year.After complaining

> about it also for a long time not being able to swallow, my

internist

> finally listened to me. I do find that sometimes stress will bring

> on the acid, it could be my imagination, but I think that upsets

the

> acid and it starts to make my esophagus react. I have had to quit

> real estate due to the stress and pressure, and have gone back to

> subbing elementary school a couple days a week which helps keep me

> busy. Most of the time I can get by, but this past week end was

> horrible, in fact, the past two week ends were. At times my husband

> gets perplexed and suggests maybe a tranquilizer would help me. It

is

> hard on him,and on my 84 yr. old Mother too to see me so

> uncomfortable. What foods can we eat? NO ONE has given me a list of

> what to stay away from. I know meat is gone for me, popcorn is a no

> no, (I tried it and paid for it), chocolate seems to get me very

sick

> now and once I ate it all the time, I am off sugar products, and

try

> to eat a lot of soups to get my nourishment. Juices are a no no,

and

> I am finding wine and coffee very irritating as well. PLEASE help

me

> someone, you guys are the only ones who can help us, the doctors

dont

> know what we go through one bit, and only treat it medically.

Thanks,

>

[Guest guest]

So. I went in early June for my big aspirin desense. The process overall was

not too bad. I reacted at 81mg and that was it. I now am on 1300 mg a day. Right

after desense they put me on Predisone to shrink existing polyps. It was great.

I could breath and smell for the first time in well over a year (I had surgery

last summer and was full of polyps within 3 weeks). I felt great and was on top

of the world!

Well, the prednisone stopped and I filled up again within days. The polyps were

creeping back down my nostrils, completely blocking my nose. I continued to take

my aspirin (plus Nasonex, Symbocort, and nasal irrigation, even though it was

hard to get anything up there.) I didn't sleep much in June or July. I always

though aspirin was supposed to slow polyp growth.

We are leaving on vacation and I am doing another round of prednisone. I really

want to be able to smell the ocean. I live in St. Louis and don't get near the

ocean very often. Within three days on prednisone, my sinuses are open. The

polyps have shrunk way up. I have gotten more gunk out of my nose than I can

have ever imagined. My sense of smell is returning. It's the prednisone, not the

aspirin that is making a difference. I am pretty sure when I stop taking it, I

will swell up again within a few days.

I was so hopeful for aspirin desense, but I don't think it's made a difference

at all. Has anyone dealt with this? Anyone have insanely fast growing polyps?

Should I consider stopping aspirin, having another surgery, and then

re-desensitizing? I am going to beg my doctor for Pulmicort Respules to drop

into my nose. I am seeing Dr. Slavin on Aug. 11.

By the way, I very rarely get sinus infections. I haven't had one in years. I

asked for an antibiotic about 6 months ago, just in case, but noticed no

difference after taking it.

Any advice or ideas you could provide would be amazing.

Thanks!

Christy

[Guest guest]

This is just my opinion Christy, but I think if you had had the polyp surgery first and then had been desensitized, you would be feeling quite different at this point. You may want to go this route next, go through desensitization again and see how you feel. I'm afraid if you are that full of polyps, nothing is really going to make a difference unless you live on Prednisone or get rid of the polyps. Best of luck and sorry you are going through this.

Jane

From: whitech@... <whitech@...>Subject: Still Sufferingsamters Date: Thursday, July 30, 2009, 6:34 AM

So. I went in early June for my big aspirin desense. The process overall was not too bad. I reacted at 81mg and that was it. I now am on 1300 mg a day. Right after desense they put me on Predisone to shrink existing polyps. It was great. I could breath and smell for the first time in well over a year (I had surgery last summer and was full of polyps within 3 weeks). I felt great and was on top of the world!Well, the prednisone stopped and I filled up again within days. The polyps were creeping back down my nostrils, completely blocking my nose. I continued to take my aspirin (plus Nasonex, Symbocort, and nasal irrigation, even though it was hard to get anything up there.) I didn't sleep much in June or July. I always though aspirin was supposed to slow polyp growth.We are leaving on vacation and I am doing another round of prednisone. I really want to be able to smell the ocean. I live in St. Louis and don't get near the ocean very

often. Within three days on prednisone, my sinuses are open. The polyps have shrunk way up. I have gotten more gunk out of my nose than I can have ever imagined. My sense of smell is returning. It's the prednisone, not the aspirin that is making a difference. I am pretty sure when I stop taking it, I will swell up again within a few days.I was so hopeful for aspirin desense, but I don't think it's made a difference at all. Has anyone dealt with this? Anyone have insanely fast growing polyps? Should I consider stopping aspirin, having another surgery, and then re-desensitizing? I am going to beg my doctor for Pulmicort Respules to drop into my nose. I am seeing Dr. Slavin on Aug. 11. By the way, I very rarely get sinus infections. I haven't had one in years. I asked for an antibiotic about 6 months ago, just in case, but noticed no difference after taking it. Any advice or ideas you could provide would be amazing.

Thanks!Christy