RE: To cut or not to cut?

June 30, 2004

Hello Pete

Have other thought these thoughts?

Yes, Pete, others have thought those thoughts. You are not

alone. I lost about 45 lbs before I got a diagnosis. My

achalasia progressed pretty fast. I considered the weight

loss a plus and was very happy to have lost it. I didn't just

look better I felt better and that was the important part

to me. At least I felt better for a while. Then I reached

the point that I had no energy and felt horrible.

I didn't have surgery, but I had a dilatation and was glad

to be able to eat again because I had reached the point that

I couldn't even keep water down. I think I actually lived on

chocolates. I love chocolate, sooooooooo of course I kept

eating chocolate and put back on about 40 lbs. I am beginning

to lose food again, but I am getting food down too. Enough

that I am losing some of the weight, but very slowly. I am

still able to get down liquids and I don't feel exhausted like I

did before. I did have an endoscopy a few months ago and was

told that I should wait a while longer for additional treatment.

But you better believe if I reach the stage I did before I had my

dilatation I will be getting some kind of treatment, weight or

no weight.

Have no fear, you are not a freak...I know there are others

who have been happy to have the weight off as well. I think

most people who have fought the weight battle feels happy

about that part of it. You will simply need to be aware that

it is easy to put back on and not be an idiot and eat like I did.

I tried to make up for lost time. LOL

Good luck

Maggie

June 30, 2004

Pete, I know what you mean.

I've battled obesity since I was about six years old, and I was actually about 50# into a 100+# weight loss cycle when my symptoms progressed to the point of "water don't go downhill no more!" Since I was already losing weight on purpose, it was nice to be able to be a bit "lazy" about it.

By the time I finally had my second dilation, I was giving Calista Flockhart a run for her money, I was so thin. (I was underweight -- I would never want to get THAT thin and weak again!) I did put on some weight after the dilation worked, but then I really put it on when I became pregnant with my son a year after the dilation (you don't have to worry about THAT at least!)

Right now my symptoms are s-l-o-w-l-y coming back, bit by bit, and I'm still about 50-60 pounds overweight. I'm monitoring the condition of my esophagus (watching for stretching out, etc.), but I'm not planning on having surgery until I get to that "in a bad way" state of living, providing that my esophagus doesn't get too stretched out.

I would discuss your concerns w/ your doctor; each situation is so unique! If you're getting enough down that you're not stretching out your esophagus, you should be "safe" to hold off on surgery. But if the night choking/aspiration is giving you pneumonia and you're to the point where you can no longer eat in public, you have to evaluate if you're doing more damage to your esophagus (a stretched out esophagus is more likely to need an esophagectomy) and if your quality of life has deteriorated. If you can't enjoy time w/ family and friends, is it worth it to be skinny?

Three decades of yo-yo weight ranges and going back and forth being "normal" size or being "fat" has made this something that I'm unfortunately very familiar with. It's just a personal decision, and like I said every situation is different....

Pepto Deb

I have lost about 30 lb. since developing achalasia. I have gotten many compliments from people. I feel better about myself. I look great when I look in the mirror. I ask myself this question many times. Will I put the weight back on if I undergo the surgery? There is a side of me that gets excited every time I lose a pound or two. I see it as one of the greatest things that has happened to me. I also enjoy the extra attention when people know I have a "condition."

I know surgery is what I need, and the condition will get worse. But, part of me doesn't want the surgery. Part of me would rather gag on food than put the weight back on. While I would never cause myself to vomit, there is a side of me that feels good when I lose my lunch, thinking, I could lose the weight anyway. There is a part of me that thinks that Achalasia is the best thing that ever happened to me. Have other thought these thoughts? Did other put the weight back on? Do other sometimes not want surgery?

Boston Pete

June 30, 2004

Pete, I have a huge struggle with this & I really, really appreciate your frankness & honesty. My sister has had anorexia for over 20 years, so I have been super sensitive to this whole issue. In addition, I have been pregnant and/or nursing for the better part of the past 14 years, so let's just say "I looked like I had had 6 kids".

I lost 45 lbs before the surgery and actually started getting bony. Dan even said the other day that I had gotten too skinny (thankfully, he likes "healthy women"....well, hopefully only one "healthy woman" -lol!). He never would have said it at the time because he knew I wasn't trying to lose weight.

I had the surgery 2 months ago. I have gained 5 lbs. I think I am great right here. I really need to start exercising (I want to start running again), but I haven't yet. I need to just do it. But also, I really can't overeat right now. I get spasms when I eat too much. Also, I still need water to push the food down, so for me, I doubt I will gain back a huge amount. Also, I remember that the surgery isn't a cure and I may have a time when I'm too thin at some point. My doc actually put me on Paxil for anxiety over eating (about 1 month ago) & for the spasms. It has helped a lot. I was anxious to eat because I was scared I'd choke. Since the Paxil, I have put on the 5 lbs, but I also needed it & I don't think I'll over do.

Hope this helps. I truly am glad you brought it up. I also think it is great to voice your concerns to someone who will hold you accountable to a healthy weight.....I told both my GI and PCP my concerns and they were great about it.

Of course, we can always make you send us photos of you in a swimsuit to keep you accountable! hahahhaha- kidding. Cindi

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June 30, 2004

Hi Pete!

I totally understand where you are coming

from. In the last year and a half, I have lost 70lbs. Most of it

was before I was officially diagnosed with A, but I know that at least 10lbs have

been lost since I was diagnosed. I think close to half of the weight has

to do with A, but did not know it at the time.

My greatest fear about having the surgery,

is the same as yours. Will I gain it back?? That would be

horrible. My husband is with me 100% to help me keep it off, and we would

like to start a family when I am “better” so that will also help

keep me motivated to stay where I am at weight-wise.

I am constantly getting compliments as

well, and would love nothing more than to stay at the 160lbs I am at (even a

little below is ok by me!). I don’t think I would ever actually NOT

have the myotomy done, as I know in my heart (and throat!) it is the only thing

that will help me at this point, other that continuing to live on oatmeal and

mushroom soup. I can handle it a bit longer as needed, but for another

80+ years of my life (I am praying!), I doubt it!

Stay positive Pete, and know that to cut

is most likely the best thing for you, too.

Good luck!

21

Chilliwack, BC

I have lost about 30 lb.

since developing achalasia. I have gotten many compliments from people. I feel

better about myself. I look great when I look in the mirror. I ask myself this

question many times. Will I put the weight back on if I undergo the surgery?

There is a side of me that gets excited every time I lose a pound or two. I see

it as one of the greatest things that has happened to me. I also enjoy the

extra attention when people know I have a " condition. "

I know surgery is what I

need, and the condition will get worse. But, part of me doesn't want the

surgery. Part of me would rather gag on food than put the weight back on. While

I would never cause myself to vomit, there is a side of me that feels good when

I lose my lunch, thinking, I could lose the weight anyway. There is a part of

me that thinks that Achalasia is the best thing that ever happened to me. Have

other thought these thoughts? Did other put the weight back on? Do other

sometimes not want surgery?

Boston Pete

July 1, 2004

Hi Boston Pete,

I have also had those feelings. I thought

it was great loosing weight, even though my family thought I was bulimic. I

just had to assure them that I wasn’t and that I really was hungry and

wanted to be able to eat. I had lost 60 lbs and was at the point where I couldn’t

swallow my saliva. I hadn’t even been diagnosed yet and didn’t have

a clue what was wrong. Luckily, I guess by the grace of God, one day I was able

to get the food down by drinking tea. My LES just wooshed

open! It was great! And then I started putting the weight back on…but not

all of it.

After I had surgery, I remember my surgeon

coming in and whispering to me…”you are going to be thin”! I

will never forget that! I was still in this almost hypnotic state of mind, and

I can hear his words and his voice so clearly over and over in my mind! LOL

I have lost weight since surgery. I lost

18lbs the week I was in the hospital and then I started on the Omega Zone diet

about 9 months after my surgery. I basically just changed my eating habits. I

don’t like to think of it as a diet, because when I diet, I ALWAYS gain

weight. I lost another 25 lbs and then I gained some weight back when I was

going to school. I really need to eat when I’m studying, but I’m

finished with school now, and back to my regular “good” eating habits,

and beginning to loose weight again.

Sometimes I want ice cream, and I know I’ll

gain weight if I eat it, but it doesn’t go down well, I think because of

the cold, so when I eat ice cream, I never wash it down with water. I always go

in the bathroom and gurge it back up.

I know it sounds bad, but I’m still

guilty of taking advantage of being able to “gurge”.

It’s just not as easy to gurge as it used to

be.

Good to hear from you. I wish all our men

would post more often. You men all crack me up! But maybe we women just get a

little too chatty sometimes? LOL

Sorry you’re getting worse. I would recommend

you go ahead and have surgery. You can still gurge

post surgery, but it’s not a very pleasant habit to get into.

I think your horse is absolutely

beautiful! What kind is it? It almost looks like a Clydesdale!

Mylanta

Mint ~Sandi LOL

To cut or not

to cut?

I have lost about 30 lb.

since developing achalasia. I have gotten many compliments from people. I feel

better about myself. I look great when I look in the mirror. I ask myself this

question many times. Will I put the weight back on if I undergo the surgery?

There is a side of me that gets excited every time I lose a pound or two. I see

it as one of the greatest things that has happened to me. I also enjoy the extra

attention when people know I have a " condition. "

I know surgery is what I

need, and the condition will get worse. But, part of me doesn't want the

surgery. Part of me would rather gag on food than put the weight back on. While

I would never cause myself to vomit, there is a side of me that feels good when

I lose my lunch, thinking, I could lose the weight anyway. There is a part of

me that thinks that Achalasia is the best thing that ever happened to me. Have

other thought these thoughts? Did other put the weight back on? Do other

sometimes not want surgery?

Boston Pete

July 1, 2004

Hi Sandi,

It's not the cold that makes it hard to eat ice-cream. It's because it is so light that it turns to foam and makes it impossible to force down. I haven't ever been overweight, but I have suffered from fainting spells from not being able to eat. I guess I'm the opposite. I would be happy to have a few extra pounds. I went to bed an hour ago and woke up thinking about Biancka. We are such a close Achalasia family. I guess I'll stay up now and play Hearts on pogo.com.

My boys leave tomorrow for Fort Hope. It's been an extremely emotional 6 months. Unfortunately, I'll always have to remember "Canada Day" as the day my boys returned the reservation. My girls are thrilled, but I am sad.