Re: Endoscopy/dilation yesterday

[Guest guest]

Hi Jenn

this condition can really make you feel at rock bottom some times. Until I found

this group I felt so alone and now I don't and it has been so emotional for me.

I totally understand your symptoms and fear! I have learnt to just give in when

the 'blues' hit me. If I take the fight out of it then I tend to pick up quicker

but it is a horrible feeling and I have had to accept that there are bad days

which leave me just simply wanting to cower under the duvet.

My symptoms are not unlike yours - I have a lot of regurgitated saliva but,

fortunately, am not sick which is a real phobia of mine. I am struggling to get

anything down at the moment and am also starting to think will I need an

esophagectomy which I too find terrifying. However if it turns out to be the

best way forward then I will just surround myself with people to help me get

through it (and chat to people here). I learnt when I had my myotomy (which also

terrified me) that it was better not to act brave because then I got the support

I needed and the nurses looked after me so well.

I know it is so hard but try to just carry your fear until you actually see your

consultant. concentrate on things that you like and just acknowledge the fear is

present and then move on to something else. It is not pretending it isn't there,

in fact just the opposite. Acknowledge it every time it pops up then return to

whatever better thing you were involved with.

This condition is part of us but not all of us. Keep in touch - you will manage

this. tomorrow will be a new day. Love Kay

>

> Hi all,

>

> Haven't posted much in quite a while, but am feeling pretty down today due to

yesterday's endoscopy/dilation. Talking to you guys always helps me not feel so

alone.

>

> Quick historical summary - Diagnosed around 2000, 1 unsuccessful dilation,

then a myotomy in 2001 or 2002. Pretty good relief of worst symptoms until

about 2009. In 2009 had a dilation that helped some, but recently have been

having worse symptoms again.

>

> So, lately have been having a lot of heaviness in chest feeling, with

regurgitation of saliva and foam mostly. Food gets stuck and sometimes I can't

tell, then when I drink something, everything is suddenly really blocked up and

I feel like my esophagus is compressing my windpipe and making it feel like I

can't get air (its actually kind of scary). I usually then am able to

regurgitate a lot of saliva and foam (strangely, actual food doesn't come up

very much - mostly saliva), and eventually stuff feels like it goes down, and

then things are a bit better.

>

> I went in yesterday for an endoscopy and hoping to get another dilation to

help.

>

> Sunday afternoon/evening I tried to eat really light - whey protein shakes and

a few crackers - to try to make it so that my esophagus would be clear for the

procedure, which was at about 11am on Monday.

>

> The doctor gave me photos of my endoscopy and showed me a bunch of food still

in my esophagus - the crackers were still in there - even after 14+ hours and no

actual constriction of the LES!

>

> He said that he did a dilation, but that there wasn't much actual dilation

done because the LES wasn't constricted - it was already as wide as the dilator

thingy. They had used the biggest dilation thing in 2009 and it still seemed

like the opening is very large.

>

> I still have to sleep half-sitting up, and I have some trouble at nights if I

don't use a CPAP machine (I don't have sleep apnea, which is the usual use of

CPAP, but it really helps prevent me choking and aspirating on saliva/food at

night - I'm so glad that I have this machine!).

>

> I need to make an appointment for an office visit to talk about my " options. "

Which I'm terrified to mean will be an esophagectomy. That scares me so much.

But I've already had a myotomy and dilations don't work for me, and I still have

food sitting in my enormous baggy esophagus for days on end.

>

> Anyway, I'm feeling very scared, alone, and down in the dumps. I try to tell

myself that other people have worse problems, but it doesn't seem to be helping

me much.

>

> Jenn

>