CHRONIC ACHALASIAN--NOW AGE 23 (this is a long posting about my )

[Guest guest]

Wow, this must be my lucky day, since the age of 13 I have been

looking for support groups on anyone with achalasia, and today I

found one...Since then 10 years have passed, and today I have found

an Achalasia group!!!

My name is ...At the age of 13, I was diagnosed with

achalasia...Since then I have had dilatations,balloonings, Heller's

Myotomy, Nissan Fundoplication, a Colonic Interposition (where my

surgeon literally took out my esophagus and replaced it with a piece

of my colon), Pyloroplasty, etc..--in total 13 surgeries...

I don't have a medical degree, but I have researched this disease

inside out, being a Biology major in College and now working with

Pfizer, and living with one of the most painful disorders out there.

I was treated at Children's Hospital of Philadelphia, since the age

of 13, and had one of the best surgeons Dr. Louise Schnaufer--who

was trained with Surgeon General Koop, who has performed the

majority of my surgeries....

I would literally not be where I am today, if it were not for

Children's Hospital and my dedicated surgeon and my dedication to

living with this wretching motility disorder and can actually say it

has made me a strong 23 year old.

Many of your emails bring back horrifying memories of the symptoms

of the disease--staying up all night feeling like someone was

stabbing my chest and back, drinking water--glass after glass--

wishing the food lodged in my esophagus would just go down, feeling

like food was stuck in my chest for hours, regurgitating saliva (day

after day) and running to the bathroom after meals amazed how my

food just bounced back, wishing it was all a bad dream....

I have come so far from those memories...After getting opinions

after opinions, it was decided my whole esophagus would need

replacement, since my disease had progressed to the point where I

could not retain anything and had dropped to 66 pounds...Doctors

were in utter shock to see the worst case of achalasia in a child in

the East Coast. I finally underwent the colonic interposition at

the age of 17.

It was a miracle that I could swallow without pain--though I did not

a few revisions at the anastamosis...--but today I can say with

confidence that I am a new person--I feel like God has given me a

second chance at life--just swallowing and not feeling like someone

is strangling my throat is the best feeling in the world!!!

However, my motility in my stomach and colon has diminished

enormously and now I get excrutiating pain in my stomach after I eat

a meal--which Doctors have still not been able to diagnose, and have

also developed Dumping Syndrome...

I could go on for years talking about achalasia--but to sum up--I

know what each one of you is going through, because I have been

there before and am actually out of tears to cry from all the pain I

have gone through all these years. I have learned so much about

life through living with achalasia, I almost feel like I can conquer

anything--my family stood solidly by my side surgery after surgery,

many of my friends left my side through the years--I found out who

truly cared about me (mainly my family and God), have many scars

(but have learned they too are just a part of me-people still cannot

believe my life's story because I carry myself very confidently and

well-and that my beauty shines from within), and I have learned

sooooo much about this painful disorder...Today I am strong and have

learned to take one day at a time--and though it may seem like you

have it the worst--remember someone out there may have it worser...

Often I have wondered " Why do Good People Suffer? " and one answer

that an Angelic Uncle gave to me was " It is times of pain, that we

reach out to God " ....Somehow I feel like I have grown closer to

God...He reached out to me...

Just know that each one of you is a " Trooper " for just getting

through the day and know that you can get through this--these ten

years have been the worst of times, and the best of times....Also

remember nothing is permanent in life--just as there are cloudy

days, there will be sunny days...Never give up!!! And know that I

feel each one of your pain and will hold all of you in my

prayers...God Bless You All!!!

and if anyone needs any help or questions in which I can assist

please do not hesitate to email me...

I was interested in knowing if anyone developed achalasia at a young

age...After research was conducted on my native esophagus, it was

seen that I barely had any ganglion cells in my esophagus--close to

none...Doctors told me mine must have been congenital, but I can

truly say I was normal to the age of 13 and it just came on one day

when I choked on rice...Foods that I avoided were rice (big NO-NO),

bananas, meat like chicken, and french fries. If I drank soda, I

would be in chronic pain the whole night with chest pain...I was

curious to see if anyone noticed any similarites to any of these

foods..

[Guest guest]

- wow. What an inspiration you are!! And being a Pennsylvanian (I'm about 2 hours west of you), I am thrilled to learn that someone nearby is experienced in esophageal replacement. What hospital is your surgeon located at? I have been treated at Hershey & have been very pleased with the results of my myotomy 2 months ago. But we all know that esophageal replacement could be necessary for any of us.

I don't think most achalasians have problems with motility in their colon (although we have discussed this before!). Perhaps the cause of your A is truly different than most people and is related to smooth muscle degeneration throughout your digestive tract. I think most of us have struggled with certain foods (check out this site thoroughly, you'll find all kinds of info). In fact, bananas was one of my worst & my GI doc initially thought I had an allergy to them....turned out I do....but much worse food allergies to dairy, seafood, citrus, etc,....etc....

Glad you found us!!! And your uncle is right....often the Lord uses these things to get our attention & help us to make the decision to rely on Him for strength! Cindi, also in PA

PS: FINALLY!! People from Pennsylvania! Yeah! Maybe we should get together!!!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

---Wow! What an awesome testimony to God's miracles. I am in awe of

you. Your journey has been a long and difficult one but your first

statement was " this must be my lucky day. " You exude so much

positive that you must smile and the whole world just stops! Thank

you for telling us about what the Lord has done for you. HE has also

performed miracles in my life and I am just as grateful! Thank you

for joining our family.

Jo from Florida

In achalasia , " huggie192002 " <huggie192002@y...>

wrote:

> Wow, this must be my lucky day, since the age of 13 I have been

> looking for support groups on anyone with achalasia, and today I

> found one...Since then 10 years have passed, and today I have found

> an Achalasia group!!!

>

> My name is ...At the age of 13, I was diagnosed with

> achalasia...Since then I have had dilatations,balloonings, Heller's

> Myotomy, Nissan Fundoplication, a Colonic Interposition (where my

> surgeon literally took out my esophagus and replaced it with a

piece

> of my colon), Pyloroplasty, etc..--in total 13 surgeries...

> I don't have a medical degree, but I have researched this disease

> inside out, being a Biology major in College and now working with

> Pfizer, and living with one of the most painful disorders out there.

>

> I was treated at Children's Hospital of Philadelphia, since the age

> of 13, and had one of the best surgeons Dr. Louise Schnaufer--who

> was trained with Surgeon General Koop, who has performed the

> majority of my surgeries....

> I would literally not be where I am today, if it were not for

> Children's Hospital and my dedicated surgeon and my dedication to

> living with this wretching motility disorder and can actually say

it

> has made me a strong 23 year old.

>

> Many of your emails bring back horrifying memories of the symptoms

> of the disease--staying up all night feeling like someone was

> stabbing my chest and back, drinking water--glass after glass--

> wishing the food lodged in my esophagus would just go down, feeling

> like food was stuck in my chest for hours, regurgitating saliva

(day

> after day) and running to the bathroom after meals amazed how my

> food just bounced back, wishing it was all a bad dream....

>

> I have come so far from those memories...After getting opinions

> after opinions, it was decided my whole esophagus would need

> replacement, since my disease had progressed to the point where I

> could not retain anything and had dropped to 66 pounds...Doctors

> were in utter shock to see the worst case of achalasia in a child

in

> the East Coast. I finally underwent the colonic interposition at

> the age of 17.

>

> It was a miracle that I could swallow without pain--though I did

not

> a few revisions at the anastamosis...--but today I can say with

> confidence that I am a new person--I feel like God has given me a

> second chance at life--just swallowing and not feeling like someone

> is strangling my throat is the best feeling in the world!!!

> However, my motility in my stomach and colon has diminished

> enormously and now I get excrutiating pain in my stomach after I

eat

> a meal--which Doctors have still not been able to diagnose, and

have

> also developed Dumping Syndrome...

>

> I could go on for years talking about achalasia--but to sum up--I

> know what each one of you is going through, because I have been

> there before and am actually out of tears to cry from all the pain

I

> have gone through all these years. I have learned so much about

> life through living with achalasia, I almost feel like I can

conquer

> anything--my family stood solidly by my side surgery after surgery,

> many of my friends left my side through the years--I found out who

> truly cared about me (mainly my family and God), have many scars

> (but have learned they too are just a part of me-people still

cannot

> believe my life's story because I carry myself very confidently and

> well-and that my beauty shines from within), and I have learned

> sooooo much about this painful disorder...Today I am strong and

have

> learned to take one day at a time--and though it may seem like you

> have it the worst--remember someone out there may have it worser...

>

> Often I have wondered " Why do Good People Suffer? " and one answer

> that an Angelic Uncle gave to me was " It is times of pain, that we

> reach out to God " ....Somehow I feel like I have grown closer to

> God...He reached out to me...

>

> Just know that each one of you is a " Trooper " for just getting

> through the day and know that you can get through this--these ten

> years have been the worst of times, and the best of times....Also

> remember nothing is permanent in life--just as there are cloudy

> days, there will be sunny days...Never give up!!! And know that I

> feel each one of your pain and will hold all of you in my

> prayers...God Bless You All!!!

>

> and if anyone needs any help or questions in which I can assist

> please do not hesitate to email me...

>

> I was interested in knowing if anyone developed achalasia at a

young

> age...After research was conducted on my native esophagus, it was

> seen that I barely had any ganglion cells in my esophagus--close to

> none...Doctors told me mine must have been congenital, but I can

> truly say I was normal to the age of 13 and it just came on one day

> when I choked on rice...Foods that I avoided were rice (big NO-NO),

> bananas, meat like chicken, and french fries. If I drank soda, I

> would be in chronic pain the whole night with chest pain...I was

> curious to see if anyone noticed any similarites to any of these

> foods..

[Guest guest]

Hi!

Thanks

for your email! I am glad you have found us, and I hope you will get lots

of info needed from this site, as well as bring help to others who have

joined. I cannot believe all you have already gone through.

Hopefully things continue to get better, and you MUST be over the worst, from

your story! I was diagnosed with achalasia in January (I am 21). As

to your question about food, rice has been ok for me up until about 2 months

ago. Weekly, I am still picking foods out of my diet that are not

working. Most meat are also not good for me. As of right now, fish

sticks (microwaved only, so they stay squooshy J ) are the only meat I am

able to eat. Ground hamburger mixed into things like sauces are ok,

too. French fries and pop are no-nos as well. Actually, french

fries were the very first food I remember having trouble eating. I just

thought I put too many in my mouth, and they all came up. Blah! I

am right now mostly eating oatmeal for breakfast, mushroom soup for lunch, and

overcooked noodles for dinner. Not a very nice combination of meals day

after day! Hopefully it will be over soon! Thanks for joining, and

we hope to hear more from you!

Chilliwack, BC