Wow! There Are Others That Feel Like I Do...

My story in a nutshell:

At the age of nine I started having trouble swallowing but for whatever reason I was too embarassed to tell my mom. So, for about a year I would excuse myself from all meals and silently slip into the restroom to regurgigtate my undigested food.

At some point around the age of 10, and for reasons I can't even remember, I told my mom. At this time my weight had dropped severly and I wasn't able swallow anything, water included. She immediately took me to the doctor, was diagnosed (after rounds of tests and even an EKG) and I had emergency surgery that week. Seeing as this was 1980 the treatment was very different than it is today. They cut my entire left side open, collapsed my lung and broke my ribs to get to my esophagus and perform a wrap (I think, my mom knows the terminology way better than I do).

The recovery was brutal. I awoke in the pediatric ICU with a half body cast and catheter confused and scared. I honestly can't remember how long I spent there but I do recollect a huge glass jug next to my bed that was collecting all fluids before they made it to my esophagus, so it could heal properly.

Having said all of this, I am not complaining. Just stating the facts and how it felt to a 10 year old little girl. My mother was a saint, sleeping at the hospital and, well, just being there.

The hardest part of achalasia for me from that point until fairly recently were the spasm's, which I termed "attacks" because that's what they feel like. Not only is there no way to know when these are coming but are debilitating to the point of curling up in a ball and crying. Oh, and they can last for 6, 7, 8 hours. At one point in my 30's I could easily miss a day of work a month because I was too exhausted to go after being up all night with an "attack". I think I was around 16 or 17 when my mom took me to a specialist who had me swallow an endoscopy tube (anyone with achalasia can relate) then taped it to the side of my face, told me to not go near the microwave or take a shower and sent me home for the weekend. This was one of the many, many appointments I attended to try and figure out what was causing the pain. For countless numbers of years I had antacids thrown at me, even though I knew it wasn't heartburn (I get that too and it's completely different). Finally about 7 or 8 years ago my doctor casually mentioned maybe taking an anti-spasmodic for the pain.

This is when things turned the corner for me. After a few months of continued "attacks" I finally called him up and told him that I'd like to give the anti-spasmodic's a try. He prescribed Dicyclomine to be taken 4 times a day and ever since the "attacks" have been few and far in between. It literally feels like a miracle. This is not to say that I never get "attacks" anymore but maybe a few times a year. Like I said, it feels like a miracle. It took me about 25 years to get there but when I finally did it was amazing!

Oh, and Diet Coke seems to help with some general discomfort as well (heartburn, food sticking, etc.) the bubbles open things up and also help me belch. Well, at least it helps me.

One facet of achalasia that has always baffled me is the lack of understanding that I seem to get from others. As I've gotten older I've learned to not tell new people in my life about it and if I do I just say that I have "esophagus issues". I've just been in so many situations where I feel like people don't understand to the point that they maybe think I'm making it up (at least that's the way I feel). Achalasia is so hard to describe that I hardly even try anymore. I actually had a boss who made me feel bad about missing work from the "attacks". Eventually I printed a copy off the computer explaining the disorder and gave it to him. I'm wondering if any of you fellow "achalasia people" have had similar situations?

It's kind of funny (for lack of a better word) to me also how after suffering from achalasia for 75% of my life how it has become so engrained in my lifestyle. By this I mean that I always carry fluids with me in case my throat gets tight or I simply need help swallowing something. also, how long it takes me to chew my food and eat my meals. Another thing for me is my fairly constant fear that I'll get heartburn in really any situation, so I have this need to carry Diet Cokes with me everywhere, just in case. Achalasia has certainly made an overwhelming mark on my life and lifestyle, but you know, it is what it is.

These are just a few of the many reason's that I was SO thrilled when my husband found this site for me. It's been 33 years since my diagnoses and have never had another person with achalasia to talk to and compare stories with. That being said, I just want all of you to know how much I appreciate being able to read your stories, I almost feel like jumping up and down knowing that it's not just me! Other people feel the same way that I do...
kittenleo13 kittenleo13
41-45, F
2 Responses Jan 22, 2013

Just found this site and you are the first person that I've seen who can come close to understanding what I've gone through. I was diagnosed with Achalasia at 6 years old and got the Heller Myotomy (along with the huge rib cage incision, but they didn't have to break my rib) in '93. It's all I've even known. Thanks for sharing your experience.

Thank you so very much for sharing your story. It is hard to wrap my head around it that you have had to deal with this for so long.

I have had Achlasia for more than 10 years. I was diagnosed 6 years ago. I had many tests and procedures and finally decided to just live with it and I did for 6 years and then I started throwing up in my sleep and that scared me. I decided to get a second opinion and then decided to have the Heller Myotomy.

I am six months out of surgery and I am still on soft foods and liquids only. My problem is that my esophagus has decided to start working again. Contracting/spasms all the time which causes pressure. I am wondering if this is your problem. It looks like it so I am wondering if the anti spasm medicine really works for you. I have it but I only take it at night.

Please if you could give me your feed back that you be great. Thank you.

So sorry it's taken me so long to reply!

The anti-spasm medicine has truly been a godsend for me. As I said, I take it four times a day, every day and it has literally been life changing. I also experience tightness soemtimes, which (for me) Is different than the spasms.

For me, the tightness feels like pressure down near the bottom of my rib cage. When I feel this a soda (diet coke for myself) helps. I think the bubbles open the sphincter and relieves the pressure as a result. It also helps me belch which is always a good thing for us achalasia sufferers.

As far as the spasms (attacks) they are completely different and extremely painful. Is there pain associated with your spasms? And how often are they happening? It sounds fairly frequent from what you've described above? You may want to mention to your doctor that you may need a higher dosage of an anti-spasmodic to help relieve this issue. As I said, I take Dicyclomine and it's been nothing short of amazing, just a thought.

Good luck and please keep me posted on your recovery!