Pre Diagnosis:
As a teen I got into
the habit of always drinking Sprite with my food. I often felt I was choking or
gasping for breath when I first started to eat a meal. It was an internal
struggle that I hid from everyone and really did not pay it much attention. I
always thought it was because I was eating too fast, or the change between hot
foods and the ice in the drink, or the harmless choking on water. It was
gradual. No chest pain, just a gradual struggle with chewing and swallowing the
meal. I started ordering a Sprite with no ice, convinced it was the food
temperature changes that caused my difficulty. I had gotten good at dealing
with my “eating” issue, and no one noticed, not even me. I got really good at
making excuses for these symptoms.
By Spring of 2004 I had gone to the ER so often that they thought I was a junkie and couldn’t really do anything for me except either give me pain meds or give me an antacid cocktail that I promptly regurgitated. And my poor hubby would go along with me wondering what the heck I had. By May of 2004 I had reached the point where I would lay in the hallway outside the bathroom and cry from the unimaginable pain that always came in the middle of the night and lasted until the next morning. I was calling out of work frequently. Reading my food diary was saddening. Some of the things I wrote down- grounded parboiled plain chicken, broth, crackers, milk, baby food. The story was always the same. Nothing seemed to be going down. I had gone to two GI’s and had had numerous tests done. Mostly they both thought it was reflux, anxiety, or gallbladder malfunction. I’d fired the two GI’s because they’d had the unmitigated gall to tell me that I was “overly sensitive to GERD discomfort and burning” and the other thought I had anxiety attacks and prescribed an antidepressant and anti anxiety medication! Well the nexium did absolutely nothing and I refused to take the anti anxiety or anti depressant because they would not take pain away.
Diagnosis:
Ironically the
diagnosis came from the surgeon who ultimately performed my Heller myotomy. I
went with a folder of all the procedures and tests ordered by the previous
quacks that called themselves gastroenterologists. Based on the consult and
looking at the extensive testing to rule out other diseases, she thought I had
Achalasia or Barretts Esophagus. Neither seemed like something good to have.
She sent me down to X-ray to get a barium swallow and we got the results the
same day. While looking at a year old CT scan that I had brought with me, she
noticed how dilated my esophagus was and how narrow it became as it got to the
LES. How come she was the only one that and yet two different GI’s had looked
at those same test results, I wondered? The barium swallow should the classic
bird beak and a much dilated top of my esophagus. She wanted to schedule me for
surgery right away but I needed time to grasp reality. By the end of that week I
was scheduled for surgery in 2 weeks.
In the beginning, I found it annoying and frustrating to try to adequately explain about the disease and the need for surgery. I can’t tell you how often I had to explain and how often I had to tell folks that I really did need the surgery, no different types of foods wouldn’t help, yes it is chronic- it’s not going away like a cold. My favorite was when people heard me explain how rare it was and indubitably they always knew so and so’s friend/relative who had it too. Uh huh, that’s why I just spend 30 aggravating minutes drawing a damn picture so you understood what the hell it was. No one can really understand what Achalasia is and how it can consume your life, unless you have it and are dealing with it. As much as our family and friends try to be supportive, unless they have experienced the horrible esophageal pain or the horrid sensation of choking on food or waking up choking on your last meal, they can never truly understand. And I have learned to accept that and just be glad to have their support if not their understanding. So now when my parents tell me to try this or blend and puree this when I tell them I am having a bad food day, I just tell them ok and go on living my life. They mean well, but really I have become a pro at dealing with Achalasia. You have to be, because there is not much choice in the matter and there is not a ton of research or knowledge to this disease.
Since 2004, the spasms have
lessened. Neither my annual barium swallows nor endoscopies have shown any
deterioration's or changes. In 2007, I had a dilatation to smooth down some
scarring by Dr. Richter. He had worked at the Cleveland Clinic and he had
experience treating Achalasia patients. In 2008, I was pregnant and was worried
about how I would do with Achalasia. Turns out I had nothing to worry about, it
was wonderful. I felt almost normal and could eat pretty much anything. I had a
couple of nasty spasms that called for a very rough night but all in all my
Achalasia was almost in “remission” during the entire pregnancy. In 2010, I had
another dilatation but found it was not as effective as the first. In 2011, I
had twin girls and that pregnancy was also blessedly normal. I could eat as
normal as I’ll ever be able to eat. I had maybe a week of intermittent spasms, for
me the symptoms improved during the pregnancy. I have been incredibly fortunate
with this disease. What do I mean? How could I be fortunate? Well it could be
worse.
I have been fortunate to
so far have a mild form of Achalasia (Stage 1) and have not needed further
surgical intervention to treat it. I have learned how to adjust to life with
Achalasia. For the rest of my life, every couple of years, I will need a barium
swallow, endoscopy, and a biopsy. I hope that I continue to receive good news.
I hope to avoid having my esophagus become sigmoid or a biopsy come back
abnormal. I try not to worry about these things because I can’t control how
this weird disease chooses to continue to degenerate my esophagus. For the most
part I live a normal life, except that I chew things thoroughly, and by now
know my trouble foods to avoid. Sometimes I get spasms that last a couple of
hours and other bad spasms that last days. I think between the regurgitation,
food stickage, and the choking, I hate the spasms the most. They are worse than
labor pains. I would venture to say they are worse than a heart attack except
I've thankfully never had angina so I wouldn't know. Spasms are like a charlie
horse in your esophagus where the pain radiates through your body- from the
front to the back of your chest. Sometimes I feel it in my throat- going up my
esophagus. It is awful, it makes you want to carve out the pain and well I
don't recommend esophageal spasms to anyone.
Achalasia
no longer rules my life and I now manage it- which is as good as it is going to
get. Still I am hopeful they find a cure in the not too distant future. I worry
that it is hereditary because of my children. I am convinced it is an auto
immune disease and hopeful that stem cell research will find a cure for it
someday.
Some achalasia websites:
http://achalasia.us/AllaboutAchalasia.html
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001313/
http://www.uptodate.com/contents/patient-information-achalasia-beyond-the-basics
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