Re: Greetings from Australia - a newbie with Achalasia

[Guest guest]

Hello Ren.  I understand what you are going through.  Did you have a wrap wi

the Heller's?  You might not be having any refux issues but another issue.  If

the food is not properly flowing into the stomach then it could be sitting in

the " E " and rotting giving you the same type of feeling as reflux.  You will

have to change sme of your eating habbits and stuff post surgery.  You wil have

to find what works for you.  We all react differently to the surgery but we all

have to adjust to a new way of eating and stuff. 

 

If you have any other questions please feel free to ask.  I have a web site

that might help you out a little.  www.achalasia.us please feel free to look.

 

<font face= " comic sans ms " color= " #ff0000 " size= " 5 " > in Georgia

</font><img src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

From: ren.evans13 <ren.evans13@...>

Subject: Greetings from Australia - a newbie with Achalasia

achalasia

Date: Monday, May 30, 2011, 6:29 AM

 

Hi Everyone, I'm new to this support group. I'm in Australia and was recently

diagnosed with Achalasia. I've recently undergone the Heller Myotomy (8 weeks

ago) and have recovered well from the surgery, but unfortunately seem to have

been left with symptoms that are far more unbearable than they were before

surgery. I mean, sure I couldn't swallow food/drink at all before surgery and

had lost considerable weight, so following the surgery, that's changed and I can

now swallow food. However, I can only eat about the amount of my fist in size,

everything has to be sloppy, the reflux is unbearable and meds aren't helping

that, I can't bend, lie down, let alone run and I'm a marathon runner so this is

highly disappointing. The burping is also incredible, sometimes I can just sit

with my mouth open and the noise is incredible.

In Oz, this is apparently a pretty rare condition to have, and mine is atypical

in that the mid section of my e functioned normally prior to surgery, however

this too has now started to spasm. My husband and I are on a reflux, japanese

diet to minimise the affects of the reflux.

Basically I want to know if there's other people out there that are experiencing

this and is it normal? Does it get any better or is it about adapting to my new

" life " now.

Thanks Ren :-)

[Guest guest]

Sad to say I am experiencing some of the same history as you. I was better

before surgery than after. My symptoms increased and my discomfort was

unbearable after surgery. I finally changed specialist and tests were completed

for my stomach and small intestine for complications from the surgery. I was

diagnosed with rapid stomach emptying or nerve damage to stomach plus other rare

complications. My original surgeon was confused, I finally told her that it was

time to " think outside the box " on what was making me miserable. She was so

adamant that her surgery was " fine. " I changed doctors for a " fresh " outlook and

found a doctor interested in listening and testing to see what was making my

life miserable. I finally found some relief. Good luck to you, do not give up,

there is a doctor who will help you. Just keep looking and find the " best of the

best. " That is the clue to improving your daily life with Achalasia.

>

> Hi Everyone, I'm new to this support group. I'm in Australia and was recently

diagnosed with Achalasia. I've recently undergone the Heller Myotomy (8 weeks

ago) and have recovered well from the surgery, but unfortunately seem to have

been left with symptoms that are far more unbearable than they were before

surgery. I mean, sure I couldn't swallow food/drink at all before surgery and

had lost considerable weight, so following the surgery, that's changed and I can

now swallow food. However, I can only eat about the amount of my fist in size,

everything has to be sloppy, the reflux is unbearable and meds aren't helping

that, I can't bend, lie down, let alone run and I'm a marathon runner so this is

highly disappointing. The burping is also incredible, sometimes I can just sit

with my mouth open and the noise is incredible.

> In Oz, this is apparently a pretty rare condition to have, and mine is

atypical in that the mid section of my e functioned normally prior to surgery,

however this too has now started to spasm. My husband and I are on a reflux,

japanese diet to minimise the affects of the reflux.

> Basically I want to know if there's other people out there that are

experiencing this and is it normal? Does it get any better or is it about

adapting to my new " life " now.

> Thanks Ren :-)

>

[Guest guest]

Thanks for your feedback . When I asked my surgeon if he had performed a

Heller Myotomy before his answer was " that's a good question. Naturally if I

was in a capital city I would have performed a few more due to a larger

demographic of people, however this is what I am trained to do and I feel

confident performing this surgery " . I think that translated to he either hadn't

done one before, or perhaps had done just the one before!

I had seen a gastroenterologist before him and this is who she recommended. I'm

seeing her again next week for the first time since my surgery to see who else I

can see for another opinion. I'm not willing to accept at this stage that this

is as good as it's going to get! I'll look into the Adelaide thing to and see

what I can find there. To be honest, I'll happily travel to the US if there are

surgeons I can see there for an opinion! Ren :-)

> >

> > Hi Everyone, I'm new to this support group. I'm in Australia and was

recently diagnosed with Achalasia. I've recently undergone the Heller Myotomy (8

weeks ago) and have recovered well from the surgery, but unfortunately seem to

have been left with symptoms that are far more unbearable than they were before

surgery. I mean, sure I couldn't swallow food/drink at all before surgery and

had lost considerable weight, so following the surgery, that's changed and I can

now swallow food. However, I can only eat about the amount of my fist in size,

everything has to be sloppy, the reflux is unbearable and meds aren't helping

that, I can't bend, lie down, let alone run and I'm a marathon runner so this is

highly disappointing. The burping is also incredible, sometimes I can just sit

with my mouth open and the noise is incredible.

> > In Oz, this is apparently a pretty rare condition to have, and mine is

atypical in that the mid section of my e functioned normally prior to surgery,

however this too has now started to spasm. My husband and I are on a reflux,

japanese diet to minimise the affects of the reflux.

> > Basically I want to know if there's other people out there that are

experiencing this and is it normal? Does it get any better or is it about

adapting to my new " life " now.

> > Thanks Ren :-)

> >

>

>

>

>

>

[Guest guest]

Thanks for your reply Barb. As awful as this may sound, it's comforting to know

that other people have experienced the same/similar issues that I'm

experiencing. Now I know it's worth pursuing the search further. Cheers Ren :-)

> >

> > Hi Everyone, I'm new to this support group. I'm in Australia and was

recently diagnosed with Achalasia. I've recently undergone the Heller Myotomy

(8 weeks ago) and have recovered well from the surgery, but unfortunately seem

to have been left with symptoms that are far more unbearable than they were

before surgery. I mean, sure I couldn't swallow food/drink at all before

surgery and had lost considerable weight, so following the surgery, that's

changed and I can now swallow food. However, I can only eat about the amount of

my fist in size, everything has to be sloppy, the reflux is unbearable and meds

aren't helping that, I can't bend, lie down, let alone run and I'm a marathon

runner so this is highly disappointing. The burping is also incredible,

sometimes I can just sit with my mouth open and the noise is incredible.

> > In Oz, this is apparently a pretty rare condition to have, and mine is

atypical in that the mid section of my e functioned normally prior to surgery,

however this too has now started to spasm. My husband and I are on a reflux,

japanese diet to minimise the affects of the reflux.

> > Basically I want to know if there's other people out there that are

experiencing this and is it normal? Does it get any better or is it about

adapting to my new " life " now.

> > Thanks Ren :-)

> >

>

[Guest guest]

Thanks . No I didn't have the wrap as it wasn't recommended at the time -

my surgeon and gastro said that as I hadn't had reflux prior it wasn't required

at the time. I guess it's just really hard to accept that after having surgery,

I actually feel a zillion times worse! Add to that I'm also a coeliac, so

eating is certainly a challenge. Fortunately I have a really supportive husband

who is happy to eat my experiments and is encouraging me to write a cook book

for people with not just achalasia and reflux, but a number of food allergies.

Re your website, that's actually how I first found this support group, so I

think it's great! Thanks Ren :-)

>

>

> From: ren.evans13 <ren.evans13@...>

> Subject: Greetings from Australia - a newbie with Achalasia

> achalasia

> Date: Monday, May 30, 2011, 6:29 AM

>

>

>  

>

>

>

> Hi Everyone, I'm new to this support group. I'm in Australia and was recently

diagnosed with Achalasia. I've recently undergone the Heller Myotomy (8 weeks

ago) and have recovered well from the surgery, but unfortunately seem to have

been left with symptoms that are far more unbearable than they were before

surgery. I mean, sure I couldn't swallow food/drink at all before surgery and

had lost considerable weight, so following the surgery, that's changed and I can

now swallow food. However, I can only eat about the amount of my fist in size,

everything has to be sloppy, the reflux is unbearable and meds aren't helping

that, I can't bend, lie down, let alone run and I'm a marathon runner so this is

highly disappointing. The burping is also incredible, sometimes I can just sit

with my mouth open and the noise is incredible.

> In Oz, this is apparently a pretty rare condition to have, and mine is

atypical in that the mid section of my e functioned normally prior to surgery,

however this too has now started to spasm. My husband and I are on a reflux,

japanese diet to minimise the affects of the reflux.

> Basically I want to know if there's other people out there that are

experiencing this and is it normal? Does it get any better or is it about

adapting to my new " life " now.

> Thanks Ren :-)

>

>

>

>

>

>

>

>

>

[Guest guest]

As I was Googling more on Achalasia, I came across this entry, mentioning some

woman about 5 years ago that would be the World Record holder for the number of

diltations. Being somewherew around 40.

Well I'm that woman! It's from Melbourne in Australia who hasn't posted

anything on here in many years as I had many things going on, including just

trying to survive this darn A.

I am considering another lot of Botox. The 1st was great and lasted about 3

months. The second was OK, but lasted only a few weeks. The 3rd was such a waste

of money. Nothing happened. So it's ONLY a 'consider' at the moment.

I see Devonshire in a few weeks who is up to date with treatments.

I may have a biodegradable shunt put in to make everything go down easier into

my stomach that is.

As for dilitation I am now at 80.

They still help me tremendously, but I am so sick of being in hospital so much

and having to leave Dylan, which he loves, home to look after himself.

He's almost 16 now and about to start VCAL/VCAT, which is Tafe (College) and

high school combined.

He wants to be a cook. And he is great at cooking. It's nice that I now have

someone that will help me cook.

Although at this moment I am only on fluids.

I let somebody else do my dilitation and we don't know what he did but he caused

11 weeks of constant, irretractable pain. Living off of Morphine injections.

Dad's still at me to sue the Surgeon. But it's been 10 years now and there is a

Statuate of Limitations, and that's passed.

But I will tell dad if HE wants to sue, then HE can, because I just don't have

the mental strength anymore for it.

I already have one Law Suit going on, which I have won, it's now all the

jiggling around.

There is no surgery on the cards for me, as eveyone is in agreement, that at the

moment, things are far from perfect, but having any surgery will only makes

things much worse. SO for no I will stick with my dilitations.

Well that's it from me.

I hope I haven't bored you or anything. LOL

Since finding this blog, I thought I will return a message telling you where I

am at.

Melbourne

Australia

> >

> > Hi Everyone, I'm new to this support group. I'm in Australia and was

recently diagnosed with Achalasia. I've recently undergone the Heller Myotomy (8

weeks ago) and have recovered well from the surgery, but unfortunately seem to

have been left with symptoms that are far more unbearable than they were before

surgery. I mean, sure I couldn't swallow food/drink at all before surgery and

had lost considerable weight, so following the surgery, that's changed and I can

now swallow food. However, I can only eat about the amount of my fist in size,

everything has to be sloppy, the reflux is unbearable and meds aren't helping

that, I can't bend, lie down, let alone run and I'm a marathon runner so this is

highly disappointing. The burping is also incredible, sometimes I can just sit

with my mouth open and the noise is incredible.

> > In Oz, this is apparently a pretty rare condition to have, and mine is

atypical in that the mid section of my e functioned normally prior to surgery,

however this too has now started to spasm. My husband and I are on a reflux,

japanese diet to minimise the affects of the reflux.

> > Basically I want to know if there's other people out there that are

experiencing this and is it normal? Does it get any better or is it about

adapting to my new " life " now.

> > Thanks Ren :-)

> >

>

>

>

>

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