What to do?

[Guest guest]

, you seem to be right where I was 10 days ago, and

I am still not sure if I am ready to go the dilation or surgery

route just yet. However, Lesley did makes some good

points about not stopping treatment.

I have an appointment with my doctor again on Sept

7th and I will discuss these options further. In the

meantime I have been reading everything I can find that

might be remotely related. I have a couple sights I have

been reading today. I don't by any means understand

all the medical terminology and maybe some of you in

health care might be able to understand this better.

One of the articles deal with the enteric nerve system. That

sight is:

http://arbl.cvmbs.colostate.edu/hbooks/pathphys/digestion/basics/gi_nervous.ht

ml

The other site is:

http://arbl.cvmbs.colostate.edu/hbooks/pathphys/digestion/basics/gi_motility.h

tml This one discusses the motility and smooth muscles.

Maybe some of you have read these already. I am new in my

research. Any comments would be appreciated.

, let me know how you do and what decisions you make.

I care,

Magg

[Guest guest]

Hey, I just reread my massage and realized how

horrible my spelling was. Don't judge me by my

spelling! Anyway I remember reading a post about

laughter being good medicine, Well just look at my

spelling and laugh. Michele

__________________________________________________

[Guest guest]

Michele - I think you're experiencing what 90 percent of us who correspond

via this message board have gone through one time or another, regardless of

what treatment decision we ultimately made. Having an invasive procedure

performed upon your body is not something anyone takes lightly, and whether

it is the more conservative balloon dilatation or the ultimately (and

hopefully) corrective myotomy, this is a big decision and is not to be taken

lightly. You stand a much better chance of having whichever procedure you

choose be successful if you are thoroughly (or at least as thoroughly as

possible) comfortable with the decision you make. As I hope you'll hear

from others in this group, they, too, did not make their decisions lightly.

Some felt that dilatation was the right choice for them, and hopefully it

was. Others felt myotomy made more sense. In my own case, I had two

dilatations performed and about 18 months after the second one was no longer

giving me the relief I needed, I then felt that myotomy would be the thing

to do. I'm glad I waited, because by the time I was ready, the surgeon I

chose had become that much more experienced and performed the operation

flawlessly. If I had undergone surgery when my gastroenterologist had first

suggested it, I probably would have had to have a thoracic approach which

would have been much more involved. As it was, I was able to have a

lapropscopic myotomy and my recovery time was much shorter and easier.

I would caution you, however, to pay attention to how you feel and how

successfully you are able to cope with achalasia. There is evidence to

suggest that the longer you put your esophagus under the stress of improper

eating techniques, the more long-term damage can be done. You can distend

the esophagus to the point where a myotomy becomes harder to perform

laparoscopically; you can regurgitate food so often that you irritate the

mucosal lining of the esophagus, putting yourself at risk for more serious

diseases; or you can have food imbedded in the lining, which also increases

the risk of infection or other diseases. Discuss these probabilities with

your doctor, if he or she hasn't done so already. You should know the pros

and cons behind waiting or moving ahead.

Take care -

Carol

What to do?

> I had a appointment with my doctor on friday to

> discuss what to do next about my Achalasia diagnosis.

> I desides against having the balloon precedure or

> operation anytime soon. My problems make my

> life/eating a constant agravation but I'm living with

> it and have not lost any considerable weight or am not

> malnurist. I'm confused what should be my next step.

> My doctor didn't argue to hard for me to have either

> of the prosedures but I could tell he didn't much care

> for my dicision to hold off on them. He wants me to

> meet with the thirasic surgion to talk about the

> operation. Which makes sense and I very well may do

> soon. I am considering other treatments and wondered

> if other had tried acupunture, or if herbs had worked

> at all for anyone? The ballon or operation may very

> well be in my future but for right now I wanted to

> find some treatments that may make this a livable

> condition.

>

> __________________________________________________

>

[Guest guest]

Hi Magg.

I do agree with you about not stopping treatment.

Everyone has to decide what options are right for them

I guess. If those decisions were made for us I guess

life would be pretty darn easy wouldn't it?!!

Dilations didn't work at all for me. My achalasia

came on and progressed pretty quickly after that. I

was dilated two or three times, can't remember how

many, and then had the surgery. Best decision I made.

Let us know what you decide to do! I think about all

of you a lot and know that even though there's a

select group of us that post, there are more people

reading these messages and educating themselves about

this condition. I know we are all being of some help

to each other, even if it is just knowing that we are

not alone and that there is someone else that feels

what we feel, experiences what we experience, and know

that it is not all in our heads, or stress, or maybe

we just all eat to fast, don't chew our food good,

.....you know... the frustrating things we have all

heard from people who I'm sure all mean well.

Wow, I guess I did a little venting there? Maybe I

should join a PMS group??

All of you, thanks for being there, and responding to

questions, and helping each other out. This group is

the best!

--- MaggWho@... wrote:

> , you seem to be right where I was 10 days ago,

> and

> I am still not sure if I am ready to go the dilation

> or surgery

> route just yet. However, Lesley did makes some good

> points about not stopping treatment.

>

> I have an appointment with my doctor again on Sept

> 7th and I will discuss these options further. In

> the

> meantime I have been reading everything I can find

> that

> might be remotely related. I have a couple sights I

> have

> been reading today. I don't by any means understand

> all the medical terminology and maybe some of you in

> health care might be able to understand this better.

>

>

> One of the articles deal with the enteric nerve

> system. That

> sight is:

>

http://arbl.cvmbs.colostate.edu/hbooks/pathphys/digestion/basics/gi_nervous.ht

>

> ml

> The other site is:

>

http://arbl.cvmbs.colostate.edu/hbooks/pathphys/digestion/basics/gi_motility.h

>

> tml This one discusses the motility and smooth

> muscles.

>

> Maybe some of you have read these already. I am new

> in my

> research. Any comments would be appreciated.

>

> , let me know how you do and what decisions you

> make.

>

> I care,

> Magg

>

__________________________________________________

[Guest guest]

Hi Michele,

Here is an alternative treatment.

My chiropractor found out that my back pains were associated to my

achalasia. Some nerves were being pinched in my back that go to my

throat. I have been getting my back adjusted for a year now and I

have gained some function of my throat. My throat is getting better.

Prior to that I got had dialation done. I just wished I went to

chiropractor first.

Let me know if you need more info.

Darwin

[Guest guest]

Hi Magg!

There are a few of us in the healthcare field and I'll try to help

if I can. The problem is that even the Drs. aren't quite sure what to

do with us. No one seems to know why one trearment works for one and

not the other. I work in a hospital,so I get my info right out of the

medical library from articles in journals rather than the website. I

have some articles that are easy to understand for people who aren't in

the field.

I wish I could give you one easy answer on what to do, but there's

alot to consider. I've had both dilatation and surgery and neither is a

cure-all for our condition. Balloon dilatation has worked tremendously

for some,it did not work for me,however,as a medical professional I

would suggest that you try the less invasive procedure first. Less

invasive meaning less trauma to the body(Balloon Dilatation).

There are other things to consider. First balloon dilatation is

less effective the younger you are. The specialists don't know why,but I

have my own theory. Second,the literature also states that the more

diltations you have,the less effective each one becomes. In other

words,if it didn't work the first time,it probably won't work a second

time. Thirdly,does your health care insurane cover the procedure ? I

live in NJ,but I had to go to Phili,PA for an achalasia specialist to

treat me,since I was out of my network I had to pay most of the expense

out of my own pocket. I paid a great deal of money for a procedure that

did nothing for me. The Dr. wanted to try a second time,and I probably

would have despite what the literature said if my insurance covered

it(Who wants surgery)?

I had the surgery in March of '98' and I feel much better. Let us

know what you decide. We are all here for you and each other.

Best Regards: Abby

[Guest guest]

Mic,

What does your doctor say about the bloating? First stage cirrhosis

shouldn't have ascites-like bloating. Let us know how you are and

what he says.

> I'm confused. I started treatment Jan. 11,03. I feel worse with

treatment than I did without. I want to quit tx.

> Are we being experimented on with the tx? Is having the tx the best

thing to do?

> My stomach is bloated up like I'm 9 months pregnant. Lots of

discomfort, weakness. I'm 3a with first stage cirrhosis.

[Guest guest]

,

This treatment is a form of chemotherapy. You are supposed to feel

worse because the treatment makes you feel so lousy. We have all felt

much worse on treatment than off. You are not an experiment.

Treatment CAN help, but it's very difficult to do. When you hit the 3

month mark, and you are there right about now, the sides seem to

really start getting to you. I know how awful you are feeling and

believe me nearly everyone who has ever done treatment can definitely

relate to your feelings.

Try not to quit. You have a real good genotype there and a good

chance of going undetected on the treatment. Maybe you need a dosage

adjustment to help you get through this. Lots of people get their

dosages lowered by their docs and then have a lot less problems. Ask

your dr about that.

As for your bloating - You might want to mention that to your Dr.

Have you ever had Acites before? This is a common side effect to the

cirrhosis so maybe you should tell him about it and see what he

suggests.

Please try and hang in there.

LeighAnn

[Guest guest]

Leighannv,

Your words and support are a daily source of hope. I for one appreciate your

kind and intelligent suggestions to people on this list.

Make no mistake, this treatment is hell! I am at the six month mark and things

keep getting worse: anemia and thyroid problems are the latest. I have got

great support in a wife who tells me to keep plugging along on a day by day

basis.

I think the doctors ought to be required to do this treatment for a month.

Thanks again, everyone,

jay

[Guest guest]

>>>As for your bloating - You might want to mention that to your Dr.

Have you ever had Acites before? This is a common side effect to the

cirrhosis so maybe you should tell him about it and see what he

suggests.<<<

Thanx for your replies. I have had the stomach swelling for about 5-6

years. It's getting worse. I had to look up ascites on the web.

I go to the VA. One doctor years ago told me to stop eating so much. He

made me mad. I said " fat people don't just swell up like a balloon in a

matter of seconds!! " I then showed another doctor my stomach. He said

it was gas and gave me simethicone which doesn't help a bit.

I was diagnosed with Hep C last year about this time. I'm still showing

them my swollen and bloated stomach, so they are aware of it. Just

nothing being done. My next appointment is March 10th and I'm going to

insist on something being done.

I'm still on tx and hanging in here. [ Mic}

[Guest guest]

I'll let you know Jeanie, if I ever find out why I swell up so bad. I

have a normal size body and a big ol' stomach. It makes people think I

eat a lot and I don't.

[ I do love hot wings and I guess they are a big No No also. ] oh my

VA doctor told me I can eat anything I want to. hmmmm......

[Guest guest]

Let us all know if you solve the mystery, :-))) I don't have IBS or

anything like it, but like you, am normal sized and only weigh 120#. I just

look like I swallowed a beach ball!

Marilyn

Re: Re: what to do?

I'll let you know Jeanie, if I ever find out why I swell up so bad. I

have a normal size body and a big ol' stomach. It makes people think I

eat a lot and I don't.

[ I do love hot wings and I guess they are a big No No also. ] oh my

VA doctor told me I can eat anything I want to. hmmmm......

[Guest guest]

I'll let ya know Marilyn. That's how my stomach is, all swelled, and

then it causes shortness of breath.

[Guest guest]

> I'll let ya know Marilyn. That's how my stomach is, all swelled, and

> then it causes shortness of breath.

Hi

Is your tummy flat in the mornings? I, too, can swell like I'm nine

months pregnant if I eat a too fatty of a meal or it's too spicy..so

the best thing for me is to eat smaller amounts of food about 4 or 5

times a day and watch my fat intake. I once went into my

Gynecologist's office looking like I was ready to deliver and a sweet

woman came up to me and patted my tummy and said , Sweetheart, when

are you due? I didn't know rather to laugh or cry. I also thought

that I was lactose intollerant but it wasn't the lactose it was the

fat in the milk I couldn't handle.......Pam....I'm not on TX

[Guest guest]

Yep Pam my stomach is big when I get up. It swells no matter what I

eat. Fatty foods make it worse though [like a hamburger]

I've had people think I'm pregnant also.

I just don't know what to eat any more. This morning I had 2 pieces of

whole wheat bread and some Jiffy peanut butter[ smooth] and now at noon

I'm not hungry and my stomach is swelled. March 10th is my next doctors

appt. and I want them to do something. Mic

[Guest guest]

>>Are your bowels moving okay?<>

oh yes, no problems there.

Your diet plan looks like the kind I need to be on.

[Guest guest]

My best cure for that is milk thistle,600 mg every 12 hours.I wish it

could work for everyone,but you never know until you try.

KM

..

> Yep Pam my stomach is big when I get up. It swells no matter what I

> eat. Fatty foods make it worse though [like a hamburger]

> I've had people think I'm pregnant also.

> I just don't know what to eat any more. This morning I had 2

pieces of

> whole wheat bread and some Jiffy peanut butter[ smooth] and now at

noon

> I'm not hungry and my stomach is swelled. March 10th is my next

doctors

> appt. and I want them to do something. Mic

[Guest guest]

:

Good luck at the doctor and my thoughts are with you.

what to do?

Ladies, I don't know how to take this. I believe that I have

miscarried. I didn't even know that I was pregnant. I finished my

period 2 weeks ago yesterday. Last week, I started cramping and

bleeding, and I felt drained. I slept alot last week, but still did

my bfl. Then Sat, I had alot of clots, and yesterday I just slept

all day.

What do I do? How am I supposed to feel? I'm waiting on the phone

right now to make an appointment (we're in the military, and it

takes forever to wait on a Mon morning to get a live person).

I feel kind of numb right now. I didn't know I was pregnant. Did I

miscarry because of being on bfl? I was taking a bunch of

supplements; could that have made me miscarry? I just don't kow how

to feel.

I know this really has nothing to do with losing body fat, but I

feel like you guys would understand, because I've been subjecting my

body to all this new stuff with bfl.

I'll fill you guys in later with what I find out.

[Guest guest]

THis is my amateur opinion - and of course you see a dr. But I have

been pregnant (2x) and I have miscarried When If you were pregnant

and miscarried you obviously were not very far along. Some people do

bleed slightly while pregnant, but if your other period was normal

than you probably wouldn't have had so much clotting. Maybe your

periods are changing from working out. Maybe you had dysmennorea

(spelling?) where I believe ou pass a benign cyst each month. There

are a lot of reaseons. Are your trying to get pregnant, because if

you are look into your supplements and be sure to add folic acid.

Good luck

Bridgette

> Ladies, I don't know how to take this. I believe that I have

> miscarried. I didn't even know that I was pregnant. I finished my

> period 2 weeks ago yesterday. Last week, I started cramping and

> bleeding, and I felt drained. I slept alot last week, but still

did

> my bfl. Then Sat, I had alot of clots, and yesterday I just slept

> all day.

> What do I do? How am I supposed to feel? I'm waiting on the phone

> right now to make an appointment (we're in the military, and it

> takes forever to wait on a Mon morning to get a live person).

>

> I feel kind of numb right now. I didn't know I was pregnant. Did

I

> miscarry because of being on bfl? I was taking a bunch of

> supplements; could that have made me miscarry? I just don't kow

how

> to feel.

>

> I know this really has nothing to do with losing body fat, but I

> feel like you guys would understand, because I've been subjecting

my

> body to all this new stuff with bfl.

>

> I'll fill you guys in later with what I find out.

>

[Guest guest]

{{{{}}}}}}

Don't worry sweetie, it wasn't the BFL or myoplex. I was sort of

doing bfl when I got pregnant last year and took a lot of myoplex in

the beginning---I was also running a lot, even did 5k's in the. When

I had morning sickness and couldn't eat, myoplex was the only thing I

could keep down.

Miscarriage can be caused by many things, and usually the Dr. won't

be able to figure out why. I'm so sorry you had to experience this,

I'm sure you feel shell-shocked, but know that fitness is great for

pregnant women and the traditional wisdom goes that if you're doing

it when you get pregnant (running, weights, kayaking, whatever) you

can do it while your pregnant. Ususally you slow down a bit towards

the middle or end, but you can pretty much keep as active as you

like. You absolutely, positively did not cause this.

all the best and lots of hugs,

victoria

[Guest guest]

*hugs* ,

Take a deep breath and wait until you get to the doctor

to see what's happened. I can't offer any advice other

then to try and relax and it's probably just a heavy period

with all the changes your body is going through.

Luv Tink

laalaa1236 wrote:

>Ladies, I don't know how to take this. I believe that I have

>miscarried. I didn't even know that I was pregnant. I finished my

>period 2 weeks ago yesterday. Last week, I started cramping and

>bleeding, and I felt drained. I slept alot last week, but still did

>my bfl. Then Sat, I had alot of clots, and yesterday I just slept

>all day.

>What do I do? How am I supposed to feel? I'm waiting on the phone

>right now to make an appointment (we're in the military, and it

>takes forever to wait on a Mon morning to get a live person).

>

>I feel kind of numb right now. I didn't know I was pregnant. Did I

>miscarry because of being on bfl? I was taking a bunch of

>supplements; could that have made me miscarry? I just don't kow how

>to feel.

>

>I know this really has nothing to do with losing body fat, but I

>feel like you guys would understand, because I've been subjecting my

>body to all this new stuff with bfl.

>

>I'll fill you guys in later with what I find out.

>

>

>

>

>

[Guest guest]

- oh honey, I want to give you a hug. It may not be a

miscarriage, but if it is, don't you dare blame yourself or anything

you have done around BFL or anything else. These things happen for

really no reason and happens more often than people realize. There

was probably nothing you could have done about it. Let us know and

we will all be sending out positive vibes for you today! Love vibes

starting!

Amy

> Ladies, I don't know how to take this. I believe that I have

> miscarried. I didn't even know that I was pregnant. I finished my

> period 2 weeks ago yesterday. Last week, I started cramping and

> bleeding, and I felt drained. I slept alot last week, but still

did

> my bfl. Then Sat, I had alot of clots, and yesterday I just slept

> all day.

> What do I do? How am I supposed to feel? I'm waiting on the phone

> right now to make an appointment (we're in the military, and it

> takes forever to wait on a Mon morning to get a live person).

>

> I feel kind of numb right now. I didn't know I was pregnant. Did

I

> miscarry because of being on bfl? I was taking a bunch of

> supplements; could that have made me miscarry? I just don't kow

how

> to feel.

>

> I know this really has nothing to do with losing body fat, but I

> feel like you guys would understand, because I've been subjecting

my

> body to all this new stuff with bfl.

>

> I'll fill you guys in later with what I find out.

>

[Guest guest]

I'm looking for some words of encouragement and dont seem to have any

that would mean anything. It's amazing that we can feel loss for

something we didnt even know we had. There are endless reasons to

miscarry, assuming that you did. Especially at the very beginning.

Dont beat yourself up, it was out of your hands.

> Ladies, I don't know how to take this. I believe that I have

> miscarried. I didn't even know that I was pregnant. I finished my

> period 2 weeks ago yesterday. Last week, I started cramping and

> bleeding, and I felt drained. I slept alot last week, but still did

> my bfl. Then Sat, I had alot of clots, and yesterday I just slept

> all day.

> What do I do? How am I supposed to feel? I'm waiting on the phone

> right now to make an appointment (we're in the military, and it

> takes forever to wait on a Mon morning to get a live person).

>

> I feel kind of numb right now. I didn't know I was pregnant. Did I

> miscarry because of being on bfl? I was taking a bunch of

> supplements; could that have made me miscarry? I just don't kow how

> to feel.

>

> I know this really has nothing to do with losing body fat, but I

> feel like you guys would understand, because I've been subjecting my

> body to all this new stuff with bfl.

>

> I'll fill you guys in later with what I find out.

>

[Guest guest]

In a message dated 5/4/2004 10:45:07 AM Eastern Daylight Time,

Nettie619@... writes:

Can anyone suggest who I call to

start this process? Or how to obtain information on our kids rights? I sure

need help on this one.. Thanks Jeanette mom to 11 with ds

Start with calling your state director of special education

which state are you from?

- Becky

[Guest guest]

Indiana