Diagnosed At 35 Years Of Age And Now Living With Achalasia

I suffered from heartburn since my first pregnancy when I was 19, but I just put up with it.
Some attacks I would drink water or milk to ease the symptoms but I never sought medical or pharmaceutical help for it.
However the heartburn got progressively worse in my late 20's and in my 30's and I was having heartburn daily, sometimes an attack would last for hours and I would drink litres and litres of water. This I now know was very silly of me and a risk to my health, but I didn't have the insight to seek help as during an attack all I want is for the pain to stop and once it does stop I just get on with my life (I am from New Zealand and our culture as people is to just deal with it and solider on).
A few more years down the line and I was waking up during the night with stomach contents coming back up my esophagus the sensation would make me cough, so I would bolt up right in bed with maybe seconds to react and run to the bathroom as a cough would make the contents fly out of my mouth. I eventually ended up not being able to sleep on my sides or tummy as the pressure on my stomach made stomach contents come up and I had to sleep propped up on at least 4 pillows to keep the contents down so I could sleep.
The coughing/vomiting episodes got worse and started affecting my activites of daily living, as I was tired from so much broken sleep, my back hurt from sleeping in an upright position and the food I ate started to just sit in my esophagus and I would vomit many many times a day.
My own saliva would build up in my esophagus and all I would have to do was bend over and open my mouth and it would regurgitate.
While I ate I would have to sit very upright to ensure some of the food would go down or I would simply stand and eat, as I would have to vomit several times anyway.
During this process I enlarged my esophagus and made a 'bowl' shape at the bottom near the lower esophageal sphincter, this sphincter had narrowed and hardened, and my upper esophagus simply spasmed, the middle of my esophagus did not work and my lower esophagus also just spasmed.
My esophagus was a broken dud.
I went my doctor when I was emotionally and physically exhausted, and I was very lucky to have gone from my initial doctor appointment, to specialist, to gastroscopy and finally to surgery of heller myotomy and posterior fundiplication in a matter of 3 months (in New Zealand that is pretty good!).
Hours after the surgery my esophagus started to spasm, the pain rendered me to tears which I am still embarrassed about, but on reflection I think I was emotionally fatigued and overwhelmed by years of 'just dealing with it and solidering on'.
Or...I am a patient that needs lots of cuddles post-surgery?
5 months has passed since my surgery and I still rarely acknowledge that I have achalasia but I am reminded of it when I can feel my food stop in my esophagus and then slowly enter my stomach, I always think 'come on go down, go down'!
On my post-op 6 week check up I told my surgeon that I think he needs to have a gastroscopy just so he knows what his patients go through, and in the future if I need another one I want more sedation; I hated them!
I still get spasms and crazy me I go straight back to drinking water to ease the pain, but in some cases I do reach for my anti-spasmotic medication.
So I empathise with you all =)
I am embarrassed telling people and hide the fact that I am in discomfort when I eat but maybe I am not the only one?
SharonHume SharonHume
31-35, F
1 Response Jan 27, 2013

The strange thing about achalasia (in my opinion) is the fact that we sufferers somehow feel ashamed by it. I was diagnosed in 1980 and therefore have been dealing with this disease for the better part of 33 years.

What I've grappled with mainly as an adult (I was 10 when diagnosed) is the fact that no-one understands. I also have given up even trying to tell new people in my life about it at all. I say I "have a stomach ache" or "am really thirsty" rather than trying to explain achalasia to people! It's crazy really. I actually had a boss who acted like he didn't believe me when I would miss work after a night of spasms (which I refer to as "attacks" because that's what they feel like) so I printed some info about achalasia out and brought it to him.

So, you are not the only one and I am proof of it! This is why groups like these are so important. My husband found this site for me a few weeks ago and as soon as I began to read the stories I couldn't believe my eyes, there are people like me after all! Took me 33 years to find, but that's okay, better late than never. Right?

There are certain things that we achalasia sufferers have to learn to accept because we're never going to be able to eat without liquids, or quickly (because we have to chew our food to pieces), etc, etc. But there are ways to lessen the discomfort. I think that these are different for each of us but together maybe we can at least help to guide each other into the right direction :)