Feeling desperate

[Guest guest]

So I had my HM 3 weeks ago as of today. It started off okay, fluids where doing

down. About 2 weeks ago I started regurgitating again once in awhile and now

for the past week I am regurgitating almost everything I try and get in me,

which is still just fluids. I'm regurgitating so much that the sides of my

mouth are chapped, around 20 times a day.

I am so hungry, so thirsty, so tired, that I am just feeling miserable. I have

talked to my surgeon who is so kind and really understands that this isn't easy

but he said we will have to wait at least 45 days or so before he will scope me

to try and figure out what is going on. Based on my symptoms he thinks most

likely things are getting stuck in the kink of my esophagus since it is sigmoid

shape.

I'm just not sure how to handle another 20 days like this. How do you take care

of babies, work full time, and deal with all the stresses of life when you can

barely walk 10 ft without needing to sit down. I'm trying really hard to stay

positive, I usually am always that annoyingly happy person, I just have never

had to deal with something like this. I'm afraid that I will most likely need

to have an esophagectomy, but honestly at this point, I would be willing to do

anything to feel better.

And to top it all off I was just diagnosed with an immune mediated arthritis of

my back, another chronic disease I get to deal with for the rest of my life.

So very frustrated with this disease right now and I'm angry the HM isn't

working like it should. Just needed to vent.

[Guest guest]

I can only say that I can sympathize with you because I'm in the same

boat atm.  I'm not sure how I'm going to work my way out of it either, but it

has to break soon.

I'm a month and a half out from my esophagectomy, still no food by mouth, and

now (the last week or so) throwing up bile probably nearly a dozen times a day.

 I feel like shit and mentally just can't get past it.  I had a dilatation

today, but my surgeon says that it's too early to do a " serious " one, so it was

very gentle, and just enough to open the pyloric syphincter as it seems that

myotomy had scarred over nicely.  My family is trying to be super supportive

and I just keep shutting them down because I just know things are going to get

better and I'm tired and frustrated and depressed.

I hope you get relief soon ... I hope we all do.

kim in canada

________________________________

From: " lindsaywalker877@... " <lindsaywalker877@...>

achalasia

Sent: Wednesday, May 16, 2012 12:34 PM

Subject: Feeling desperate

 

So I had my HM 3 weeks ago as of today. It started off okay, fluids where doing

down. About 2 weeks ago I started regurgitating again once in awhile and now

for the past week I am regurgitating almost everything I try and get in me,

which is still just fluids. I'm regurgitating so much that the sides of my

mouth are chapped, around 20 times a day.

I am so hungry, so thirsty, so tired, that I am just feeling miserable. I have

talked to my surgeon who is so kind and really understands that this isn't easy

but he said we will have to wait at least 45 days or so before he will scope me

to try and figure out what is going on. Based on my symptoms he thinks most

likely things are getting stuck in the kink of my esophagus since it is sigmoid

shape.

I'm just not sure how to handle another 20 days like this. How do you take care

of babies, work full time, and deal with all the stresses of life when you can

barely walk 10 ft without needing to sit down. I'm trying really hard to stay

positive, I usually am always that annoyingly happy person, I just have never

had to deal with something like this. I'm afraid that I will most likely need

to have an esophagectomy, but honestly at this point, I would be willing to do

anything to feel better.

And to top it all off I was just diagnosed with an immune mediated arthritis of

my back, another chronic disease I get to deal with for the rest of my life.

So very frustrated with this disease right now and I'm angry the HM isn't

working like it should. Just needed to vent.

[Guest guest]

Hi ,

I appreciate your response. Guzzling liquids is how I was always able to

swallow in the past. So out of habit I have tried this with no success. I am

still only taking in liquids, and really just juice and water at this point. I

was drinking milk but found that it was curtling (sp?) in my E and than hours to

days later I would regurg. chunks of it (when I hadn't had anything chunk to

begin with) so I have stopped with the milk.

I have been dealing with achalasia for a long time and have definitely developed

a habit of clearing my E. I can't stand that feeling in my chest.

I am so sorry so many other people on here have had the same problem. I am

nervous about getting dehydrated as I'm only getting in about 30 oz of fluids (I

think, it's hard to tell how much actually goes down) daily. Not to mention

physically I am drained.

I'm really hoping that a few more weeks and things will get better, but I have a

bad feeling about it. My surgeon was originally very confident in the myotomy

and said that once the drainage problem was fixed, my E should start to shrink

back to a more normal size. Has anyone actually experienced this?

>

> Obviously, being named , and having achalasia are not a good

combination. , from Austraia, and who just posted, almost have

twin problems, post HM.

>  

> To , just as a harmless test, I would ask you to try drinking

more than you think you need to at the conclusion of every meal. If you can

handle carbonation, try that. If your doctor says " no " to carbonation, I would

question him about that. The myotomy may have created a situation where your

esophagus can now accommodate an increased amount of food where you no longer

have the compulsion to either regurgitate or spontaneously regurgitate.

>   

> Consider the possibility that when you finish a meal that there is plenty of

food remaining at the base of your esophagus that is just building up

" sedimentary " layers that subsequent ingestion of both liquids and solids cannot

get through. As obvious as it sounds you must make every effort to clear your

esophagus at the end of a meal. Some of us in this group have developed over

time a greater " ability " to know if there is residual food there. Some can

swallow air, and by doing so willfully bring up this food that they may or may

not know has been sitting there.

>  

> There still is the possibility that three weeks out your esophagus still needs

to recover from the surgery (i.e. reduced swelling) before a more normal eating

and drinking can commence.

>  

>

>  

>  

>

> ________________________________

> From: " lindsaywalker877@... " <lindsaywalker877@...>

> achalasia

> Sent: Wednesday, May 16, 2012 11:34 AM

> Subject: Feeling desperate

>

>

>  

>

> So I had my HM 3 weeks ago as of today. It started off okay, fluids where

doing down. About 2 weeks ago I started regurgitating again once in awhile and

now for the past week I am regurgitating almost everything I try and get in me,

which is still just fluids. I'm regurgitating so much that the sides of my mouth

are chapped, around 20 times a day.

>

> I am so hungry, so thirsty, so tired, that I am just feeling miserable. I have

talked to my surgeon who is so kind and really understands that this isn't easy

but he said we will have to wait at least 45 days or so before he will scope me

to try and figure out what is going on. Based on my symptoms he thinks most

likely things are getting stuck in the kink of my esophagus since it is sigmoid

shape.

>

> I'm just not sure how to handle another 20 days like this. How do you take

care of babies, work full time, and deal with all the stresses of life when you

can barely walk 10 ft without needing to sit down. I'm trying really hard to

stay positive, I usually am always that annoyingly happy person, I just have

never had to deal with something like this. I'm afraid that I will most likely

need to have an esophagectomy, but honestly at this point, I would be willing to

do anything to feel better.

>

> And to top it all off I was just diagnosed with an immune mediated arthritis

of my back, another chronic disease I get to deal with for the rest of my life.

>

> So very frustrated with this disease right now and I'm angry the HM isn't

working like it should. Just needed to vent.

>

>

>

>

>