Re: It's back again!

October 1, 2002

I used to get heartburn daily. I changed what I eat. Now I don't get it.

I changed to a diet prescribed by my Orthopedic Surgeon for patients

with Lupus and Rheumatoid Arthritis: I avoid: potatoes, tomatoes, peppers, soy, eggplant, tobacco, all wheat

products (gluten) such as oatmeal, rye, spelt (etc), dairy, peanuts and

grapes. I still eat a bunch of foods... I eat like a horse (my sister said). And I don't have stomach aches like I used to (and I lost 25 lbs to boot).

When I did have the heartburn, I drank a few mouthfuls of Mylanta

(antacid). Good luck.

October 1, 2002

,

When I was about 2 years into my A and regurgitating everything

that I ate, and experiencing all the other horrendous things that go

along with it, I discovered that drinking warm tea allowed the food

to pass through. Then I started making sure that all the food

emptied into my stomach by gulping hard until I felt the food whoosh

through. (3 to 4 big gulps usually did the trick). After gulping the

food down with the tea, I would always have to belch several times

because if I didn't, I would get some serious spasms in my chest.For

me, the belching along with some anti-gas medication such as Maalox

or Mylanta would usually get rid of the chest pain. After a few

months of drinking tea and making sure my eso was emptied at all

times, the irritation in my eso dissappeared and I began to heal. I

got so much better from drinking the tea that I didn't even bother

going to see a GI doctor about my A until about 5 years later when I

realized that that was as good as it was going to get. I never had a

dilation or the botox injection. My Dr.'s felt that the surgery was

the best, most effective way to go. So far , it's been great! This

has been the best trick up my sleeve and I hope that it works for

you and anyone else who tries it. Good Luck! Sandi

October 9, 2002

,

For the pain, milk works best for me. I carry around small packs of

long life milk (skim 'cause it's low fat) wherever I go. They're in

my handbag and drawer at work. I wouldn't go anywhere without at

least two 200 ml tetra packs.

Monitoring what food you eat may also help. I love mushrooms but

realised they triggered horrific pains that were unbearable for

days. I only realised this after making a diary of what I ate.

Tempeh (fermented soy bean cake), walnuts, pecans, sour cream and

yoghurt were (and still are) a killer. I couldn't eat bean curd but

can now after the dilatation. I could eat mushrooms for a while

after the dilatation but now they're off the menu unless I want to

suffer those terrible pains. These pains do not occur immediately

after eating. They can happen any time the next day, i.e., about 24

hours later.

Just recently, I forgot about the tempeh. It's not on my usual menu

but is found in Indonesian restaurants. I hadn't eaten it for 9

years. So, seven years post dilatation I ate tempeh and I was in

hell for two days. I really had to think why I was having such a

terrible attack and really what caused it.

Of course, I can't attribute all my " attacks " to food but I know

certain foods do trigger them. Why? I have no idea. Most pains

come without a cause that I know of, but I can guarantee that I'll

get them if I eat the above foods. Everyone is different so you may

have some other foods that trigger the pain.

This information may be of no use to you. But one thing I

can say is that I know what agony those pains are. I do hope you

find some relief somehow. I know exactly how you feel.

Take care and good luck.

Adele (Sydney, Australia)

> Hi Everyone- I was diagnosed with achalasia at Xmas time finally,

> after much complaining until my internist ordered a cat scan and

> esophogram, where it showed up.Everyone thought I was crazy too! In

> the meantime,I was sent to U of M to see a Dr. whereby they

ballooned

> me with a 30 mill balloon. I have had 6 great perfect months, and

> then in August, the symptoms started to come back,and now I am

almost

> as bad as I was. I saw my Dr. again,and he is going to scope me to

> see what is going on, it should have lasted for more than 6months,

> plus I have excruitiating heartburn like a heart attack, and its

> almost daily. IT wakes me up inthemiddle of thenight, and is at

times

> unbearable. I am on his wait list for a cancellation to have the

> scope and dialation, and then perhaps he will know if I need to be

> ballooned again. Boy; this is one heck of a disease, at times it

> bites you right in the ass when you least expect it. I have had it

> now for one year since being diagnosed with it, and most of the

time

> can roll with it, but it does get you down. I wanted more

medication,

> but am already on aciphex twice a day, plus Pepcid AD 40 mg at

> nighttime; he said if it was acid reflux, the medication would take

> care of it. He thinks my food is getting caught, and fermenting,

then

> comes up to irritate the espohagus and cause me horrendous

heartburn.

> Does anyone have any tricks they can share what to eat, what to

> drink> It just doesnt matter what I eat, at times even oatmeal

gives

> me horrific burning. Thanks, so happy to have others to share this

> with. Thanks,

June 27, 2009

Hey Rob - I've never spoken with Dr. Richter but he is regarded as very

knowledgeable about A so you are very fortunate there. I was in your spot just

about 2 years ago. I had had a successful Hellers with Nissen in 1989 but over

time, my E had just become so grossly enlarged and had started sagging below the

juncture to my stomach. I felt pretty decent and was still eating pretty well

but it was progressing. I got a standard barium swallow and had the radiology

office burn my films onto a disc that I mailed to Dr.'s Rice at the Cleveland

Clinic and Luketich at the University of Pittsburgh - both very highly regarded

and experienced surgeons. Not to scare you but they both recommended removal -

just do to the time factor. My E had been so stretched out for so long that

another Heller would only have given me a few more years and I'd be looking at

removal anyway so I jumped in and had the -ectomy done by Dr. L at UPMC. He does

150 a year and now, 1 1/2 years later - it's the best decision I've ever made

with regards to A. Technically, I suppose I don't have A any more!

You are lucky in that if you are close to Temple, you are fairly close to

several really good surgeons. I know that has met with Dr. Dempsey

(surgeon) at Temple and liked him very much. I sent Dr. Dempsey the same package

I sent to Rice and Luketich and his office never called me or contacted me.

If surgery is needed, you are within a reasonable travel distance to the

University of Pittsburgh and Cleveland Clinic. Both MAJOR teaching hospitals

with very knowledgeable staff and excellent surgeons.

When you go to see Richter, have a list of questions for him and make sure you

write down his answers. I would then suggest that you email or send those same

questions to 2 or 3 other docs for their opinions - it helped me make my

decision when I got 2 opinions that both said the same thing.

Keep us posted and we'll help you get through the process of figuring out what's

best for you. Someone here has been through something similar and I'm sure

others will pipe in.

Good luck with your appointment. We'll be waiting to hear from you.

- in NC

achalasia free since Jan. 08

>

> Hello everyone,

>

> It has been a long time since I posted on here, but then again it has been a

while since I had to deal with something Achalasia related. For a brief

summary, I'm a person who is post Heller Myotomy (7 years ago) and has a

mega-esophagus. I've been having an endoscopy done every year to check the

health of the tissue of my esophagus and the good news is that the tissue has

remained remarkably healthy even though I retain some food and fluid here and

there inside my esophagus. So, given the good reports, two years ago my doctor

said I could go a couple years before another checkup. However, after waiting 2

years and going just a month ago for another endoscopy I've learned that my

Heller Myotomy is starting to fail and the LES muscle is starting to close up

again. It isn't completely closed, but tight enough to cause food to back up a

bit and I'm told the bottom of my esophagus near the LES has become, for lack of

better terms, more mega in that it has stretched out with another pocket down

there.

>

> So, that doctor recommended that I speak to Dr. E. Richter at Temple

University in Philadelphia, PA. After waiting three weeks for an appointment, I

will be going to see Dr. Richter this Monday (June 29th). I've been told he

wants to first do a timed barium swallow and then speak with me about treatment.

I'm sure there is nothing he can say that will shock me since I'm well aware of

all the treatments for achalasia. I'm guessing that he will recommend repeating

the Heller Myotomy, but who knows...will find out Monday for sure. I was

wondering if anyone else on here as had treatment or spoke to Dr. Richter. I

thought I would get an opinion of him before I go for my visit. Also, is anyone

on here at a similiar stage of this disease as I am? If so, has anyone had

repeat Heller Mytomy's and have they helped? I know I'm jumping the gun a

little since I haven't talked to the doctor yet, but I figure it helps to arm

myself with a little information from people who have experience.

>

> Thanks for reading. I look forward to hearing from people on here.

>

> Thanks,

> Rob

>

June 29, 2009

Hi Rob

Its been a while since we caught up sorry to hear that things are not going too

well right now, it seams there are a few of us who are in that boat right now.

I am now under the care of the same surgeon as Tim (Mr Maynard at Oxford in the

UK) and am due to have further tests (barium, endoscopy and CT scan) in the next

few weeks to see what can be done for me too.

Let us know how you get on with the Barium test and what Dr Ritchter suggests

can be done for you.

Pippa x