My Year Away. Again.

First, I went on Sabbatical. Now, I'm beginning My Year Away again as I start my first year of Retirement!

And, now, for the weirdest medical diagnosis ever.

105 Comments

In September 2016, I was diagnosed with achalasia—a condition I had never heard of.  Only one person out of between 100,000 and 200,000 people has achalasia.  With a US population of about 325,000,000, you do the math.  Seriously, do the math (I keep getting confused about what to divide or multiply).  Chances are, I will be the only person you will ever know who has this weird condition.

I am more fortunate than most who suffer from achalasia in that my gastroenterologist zeroed in on my troubles right away (after I finally made an appointment to see him).  Apparently some people suffer for up to a decade before they get an appropriate diagnosis, which given what I have experienced, I find not only bizarre, but utterly horrifying.

So what is achalasia, anyway?  It’s a swallowing disorder (or if you want to get all medical, a “motility” disease).  There are lots of swallowing disorders out there, but this one may be the craziest.  In order to be diagnosed, you have to go through four tests.  First up, the typical endoscopy.  If you haven’t had an endoscopy in a while, I highly recommend one.  For mine, I was given the drug that Michael Jackson took a little too often.  And it was awesome! (I totally see why he got addicted.)  I had the best 20-minute sleep in my life and woke up completely refreshed.  You have to have an endoscopy to “get the lay of the land” and to rule out a bunch of other esophageal problems.

Next up, you have one more test to rule out “pseudo achalasia” (code word for tumors and cancer):  a CT scan with a lovely dye injected throughout your system.  I would have called this an uncomfortable test, but then I had Test #3, which made all other tests there are in the world seem like a warm tropical island vacation.

The Manometry Study.  To explain this test, it’s helpful if you’ve seen The Matrix.  Remember those mechanical worm things that set out to destroy Neo and his crew?  Well, for the Manometry Study, the technician takes one of those and sticks it in your nose and down your throat, through your esophagus, into your stomach.  Without sedation.  How I let them do this to me, I’ll never know because I have a gag reflex that is, shall we say, sensitive.  Once the tube is in place (and the technician confirms that the patient is still alive), for about an hour, you swallow little sips of water every few minutes.  This test measures the muscle pressure of your esophagus as well as the pressure at the Lower Esophageal Sphincter (LES).  If you have achalasia, over time, your esophagus loses its ability to squeeze food down past the LES into the stomach.  The loss of this muscle squeezing is called peristalsis.  My reading was at zero, which meant my esophagus muscle was shot (bummer).  The test also shows the pressure at the LES, which is the little trap door that opens and closes. The idea is that the LES opens when food works its way down the esophagus and closes after the food passes through.  If you have GERD (severe acid reflux), there’s a good chance that the LES doesn’t close quickly enough after the food passes through, which allows the acid from the stomach to work its way back up the esophagus.  But if you have achalasia, the LES doesn’t open in the first place so the food stays in the esophagus.  In the Manometry Study, high pressure at the LES indicates the LES stays shut.  Yep, that was me.

After all of that, I still had to go through one more test.  Just to be sure.  The Barium Swallow.  I might have been concerned with this test (I had heard plenty of horror stories), but, I tell you, after the Manometry Study, having a Barium Swallow was like going to a cocktail party with your best girlfriends.  Even the barium drink seemed pretty festive. The radiologist conducting the test seemed concerned.  After shooting the first slides and then exclaiming rather loudly “Oh, wow.  Just wow!” and then quickly apologizing for the outburst, I told him I was fine and that I would also like to see these amazing slides of which he was so enamored.  You could say the radiologist and I bonded:  He, because he was finally seeing a live version of a condition he had only read about and me, I suppose, because I was the live specimen.  What he and I saw was a stretched out esophagus, a tight-shut LES, and the barium sitting in my esophagus.    That clinched it.  All doctors involved agreed.

I have achalasia.

All also agreed that there was only one solution:  surgery (scheduled for February 2).  If the condition is not weird enough for you, then how’s this?  Surgery involves making small slices in the outer wall of the esophagus, forcing the LES to stay open.  This is called the Heller Myotomy Procedure.  Then, in order to keep the food from just shooting back out my esophagus, the surgeon performs a Nissen Fundoplication (who comes up with these names, anyway?), a procedure that wraps my stomach in some weird position around part of my esophagus to help keep the food down to give it time to digest.

It’s not a cure.  Apparently, I’ll never get the pressure back in my esophagus and I’ll always have to be careful about eating.  But, I should be able to eat relatively normally after I recover from surgery.

So what have I learned from all of this craziness?

First, those of you who know me, you know how much I love food.  I love to cook food, I love to look at beautiful food, I love to read cookbooks, I love to try new foods, I love the texture of food, I love to write about food, I love to talk to other foodies about food.  And most of all, I love to eat food.  But for the past year (at least), eating has become difficult.  I do best when I stick to hot, soft foods like soup.  I love soup, so it’s not like I am deprived.  But, I’ll admit, even I am getting tired of soup.

strawberry-salad

I can’t eat this now, but soon!

Because of achalasia, I have to think before I eat.  I have to eat slowly.  I have to pay attention to my food.  I have to be mindful about what goes into my mouth.  And, I’ve come to the conclusion that there is not a single thing wrong with eating that way.  So I’m thankful that achalasia has brought me to that point even though it would have been nice to get there in a slightly less painful way.

Second, I’m reminded of what a privileged life I live.  I have a fantastic GI doc who suspected I had something other than acid reflux when I first met with him.  In just a matter of months because of his insight, I had a definitive diagnosis and a plan for the future. As the doctor told me, this is “serious, but not life threatening.”  It seems like almost every month I hear about someone who is young and healthy yet gets a cancer diagnosis.  I may no longer be young, but I am certainly healthy and have remained so, even while struggling with this condition.

Third, while I would not recommend this method to anyone, because of achalasia, I have lost excess weight.  But it’s weird.  Even though I have an extremely healthy self-esteem, I’ve learned that I do have some body image issues.  I’ve always felt like I needed to lose weight (even in 7th grade when I was growing about a quarter inch a week and could not eat enough to keep up).  My BMI is way within the normal range now and when I fill out those highly (un)scientific online polls, they all say things like “it would not benefit you to lose more weight.”  Still, I think I could lose a few more pounds before surgery.  I have nightmares that I’ll gain weight about 30 seconds after surgery (how many pizzas would it be possible to eat in my first week of recovery, I wonder?).  All told, I have more empathy now for those who need to lose weight, those who don’t need to lose weight but think they do, and those who can eat everything in sight without a care in the world.

me-as-a-kid

I was a bit chubby as a kid, but that’s okay!

Finally, I’m learning that life continues to be one interesting journey.  And the longer we travel, the more interesting it becomes.  While Easy Street might seem like a worthy goal, it’s really not.  So whatever you’ve been handed, make the most of it.  Trust me, it’s better than curling up into a ball or sticking your head in the sand.   Victor Hugo once wrote, “Many great actions are committed in small struggles.”  To be sure, compared to others, my struggles are small.  But the good news is I can take my own small struggles and work toward better actions.  That’s what I hope to do in 2017.  And, at least occasionally, I hope to contemplate these actions while mindfully eating a luscious, crunchy crusted, piping hot pizza.

Author: CJPardun

I'm a professor of Journalism and Mass Communications at the University of South Carolina. I am passionate about rowing, I'm mostly scared about sailing (but I'm competent), I love to cook when I don't have to, and I have some fairly strong opinions about journalism education.

105 thoughts on “And, now, for the weirdest medical diagnosis ever.

  1. Very informing! Thank you for sharing your story!

    Liked by 3 people

  2. Thanks, Imperium Woodcraft!

    Liked by 1 person

  3. Thanks for sharing. Very informative. Good luck with your surgery.

    Liked by 3 people

  4. Wow 😳!!!

    Weird indeed..

    And thanks for sharing something so not known …

    Liked by 3 people

  5. Only heard this in dogs at vet school…didn’t think could affect humans
    Nice,informative piece..

    Liked by 3 people

  6. That’s kind of funny, syrep! My daughter (a dog lover) sent me a picture of a dog with the condition, trying to convince me to adopt her!

    Liked by 2 people

  7. Very well written. It was easy to follow the highly medical terms because the explanation is lucid enough.

    Liked by 4 people

  8. This is amazing !

    Liked by 3 people

  9. You are special and have a great attitude! 🙂

    Liked by 4 people

  10. Pingback: And, now, for the weirdest medical diagnosis ever. — My Year Away. And Back. – prof.samblog.com

  11. I have a hard time swallowing big pills. I did have that worm test many years ago.

    Liked by 3 people

  12. Wonderful story of courage and determination. Thank you for sharing.

    Liked by 3 people

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  14. Wow, what a story. I am glad you had a quick diagnosis. I know someone who had a similar disease with the peristalsis lower in her intestine basically not working, now she has two or three machines in her which are basically ‘pacemakers’ for her gut and is leading a healthy life. I hope you get to do that too – even if you have to savor food more leisurely.

    Liked by 4 people

  15. I finally understand your condition! So well-explained. And love the Victor Hugo quotation and how you’ve used it. I’m going to put over my desk. I’ll be thinking of you on the day of your surgery.

    Liked by 3 people

  16. I loved reading this. Definite kudos for how you seem to have tackled achalasia head on. Your understanding and literacy of a complex issue is quite remarkable. Will be rooting for you and your surgeons on Feb 2! Cheers to a speedy recovery, and to enjoying textured food again, soon!

    Liked by 4 people

  17. Thanks for your kind comments, jayzmd! I am ready to get this done!

    Liked by 2 people

  18. Thanks for sharing. You are right-very often difficult to get a proper diagnosis. A couple of years ago I went through all of the same tests. Finally discovered parallelized vocal chords. All okay now! Sending prayers for a quick recovery. 🙏🏻

    Liked by 3 people

  19. My dad has always insisted on taking it easy while eating and no multi-tasking. Similar to the think before eating you mentioned. Basically, it’s a concept related to concentration: mind on whatever you do, which increasingly makes sense to me.
    Best wishes for the procedure

    Liked by 2 people

  20. Not to be rude, but my science-infested brain demands to see the barium-sitting-in-your-esophagus scan. Ahem, my apologies!
    Now the strawberry-greens-salad looks yum! Again, I apologize for my rudeness. You are brave enough to endure all those horrible tests, bravo, I applaud you! As a zoologist, I actually searched the manometry test and I was horrified. It must have hurt! Ouch!
    The little, chubby you looks so cute in the picture. *swoons*
    I hope that the surgery goes well and that you recover soon.
    Thank you for this article. Achalasia sounds hauntingly fascinating! Again forgive me as I am under the control of my freaky science-crazed brain.
    I’ll pray for you. Take care. 🙂 ❤

    Liked by 2 people

    • No worries, Poetsjasmineblog! I know what you mean. I actually asked for a copy of the pictures of the barium swallow because I was so intrigued. And, I agree that achalasia is so weird that it is fascinating. Thank you for your prayers!

      Like

      • Mention not.
        Even my mum knows about your surgery date, I told her to pray for you.
        Thanks to you, we all know about Achalasia now.
        Keep posting. ❤

        Liked by 2 people

  21. Thank you for your courageous blog. It is amazing that you are sharing something so private in such a public forum, Such a great way to take something negative and turn it into a forum that can educate and help other people. Can’t wait to keep reading.

    Liked by 3 people

  22. Very nice read indeed! Wish you all the best!

    Liked by 2 people

  23. So sorry to hear you are going through this. Thank you for putting this information online. I had never heard of it! My husband has been suffering with stomach issues for years and no doctor can come up with an answer. I will show him this article.

    Liked by 2 people

  24. Haha, oh, I soooo can relate to the dark humor and medical oddities in this post. 😂 I’m one of those “young, healthy people who got a cancer diagnosis”. Six months of chemo, radiation, and a lifetime of never knowing what the next day will bring is a sure cure to taking the edge off things.
    Or achalasia. 😜
    Best of luck in surgery, and thanks for making my night! ❤️

    Liked by 2 people

  25. Hi there nice post love your blog, do check out my blog @ Stylenjamie.com …..cheers👍👍👍

    Liked by 2 people

  26. Loved this!
    I think you might like my latest blog post, check it out https://tanyatale.wordpress.com/2017/01/13/the-portrait-part-1/

    Liked by 1 person

  27. I really love the way you are actually there throughout your whole experience including the dreadful bits. This is a brilliant description of handling your very difficult situation mindfully rather than resisting it. Respect.

    Liked by 2 people

  28. I’m amazed at the presentation of a medical case from patient’s perspective; i wish my medicine textbooks were this fun.

    Liked by 2 people

  29. I had the acid refux thing for 30 years or more and it runs in my family. My mom had it for years and my brother has it also. My problem was that food would not go where it was suppose to and seem to always like to stop right in front of my wind pipe. I scared a lot of people during those years and scared myself worse than them. Several times I thought I was going into the light, you know, that light. And I did see lights but it was from the pressure of trying to throw up. Those little shooting lights , like millions of tiny following stars. I thought my eyes were on the verge of flying out of my head. I got so chocked once that I actually thought I would have to use the toilet plunger, the stick end, down my throat, to breathe again. But thank God and Prescription Prilasect. I haven’t had to have “the Scope” down the throat in five year. I felt I looked like they were hooking up cable, and a Colonoscopy that was the HBOOOO. I am sorry…I haven’t been to bed yet, I’m in North Carolina and I am drinking coffee and the daylight she has broke. And I feel ya on the Michael Jackson sleeping drug, yep, yep,yep…loved it and could use some right now.

    Liked by 2 people

  30. Quite a mouthful of diagnoses & treatments! Good luck with your surgery and may you fully enjoy whatever you get back to cooking & eating 😉

    Liked by 2 people

  31. Good luck for your surgery, I hope it goes well without any complications.
    As much as I can say your condition sucks and all, what am I really looking forward to is hearing about your eating spree after the surgery. Plus now you can eat something, thoroughly inspect it and say the recipe! How cool is that!

    Liked by 2 people

  32. Thanks for posting your story. This is one of the several conditions that my wife has been diagnosed. Please check out our in progress, website at keepkirstenkicking.org

    Liked by 2 people

    • So sorry to hear all of what Kirsten has had to deal with! Our bodies are so complicated and when something malfunctions (through no fault of our own), chaos reigns. Thanks for all the info about all the digestive and motility conditions that you have on your site. Hang in there!!

      Liked by 1 person

  33. Thanks for sharing. Follow back maybe ?

    Liked by 2 people

  34. Thanks for sharing and very strange disease is achalasia

    Liked by 2 people

  35. It’s such a great post. And thank you for sharing your story. I’m so glad I read this.
    It’s inspirational and wonderful. I think too we should all make the most of what we have because we have much more, more comfort, more open doors, health, much more than many other people and we should be utterly grateful for that.
    Thank you.

    Liked by 1 person

  36. Humorous yet serious! …and very informative!
    I can feel that instrument through my nose, inside my body as you describe your test #3! 😱

    I admire your courage both in meeting achalasia face to face, and in writing about it!
    Thanks for sharing this! 😊

    Liked by 2 people

  37. Pingback: And, now, for the weirdest medical diagnosis ever. – Change Our Thinking

  38. I am truly sorry for all of your struggles. I am here to say that I have always had the weirdest medical issues as well. Doctors are always like “Hmm, I’m never seen this before” which is always so comforting. Or “I don’t think we can pin this down to just one diagnosis, rather several unrelated things that unfortunately you have all of”. If you need a good laugh please check out my blog as I navigate through the oddities of my life and review products that help.

    Liked by 2 people

  39. Wow , so weird

    Liked by 2 people

  40. Medical student… I always assumed achalasia wasn’t that rare but insightful story. Amazed that you can see a positive light through all that. Appreciate the candor.

    Liked by 2 people

  41. Thanks for sharing your story! Your write in such a humorous tone and it’s so nice to read! Good luck with surgery xx

    Liked by 2 people

  42. I am sure it will be a relief to get the surgery over with and return to good health. I had plain ole acid reflux from medication for about 9 months and that alone was horrible; all I wanted to eat was bland food and carbs. I can’t imagine achalasia. Thanks for sharing- and best wishes to you!

    Liked by 2 people

  43. Good luck for your surgery!

    Liked by 2 people

  44. This is very interesting. Thanks for sharing, and I’m anxious to see how your surgery goes (as well as you are, of course).

    Liked by 2 people

  45. This was really informative. Had never heard anything quite like this even after belonging to a family full of doctors.
    I pray and wish the best for your operation.
    Good Luck!

    Liked by 2 people

  46. I was impressed how the tone of the post changed to highlight some of the positive, unexpected side-effects of this debilitating condition. Wish you good health and continued positivity!

    Liked by 2 people

  47. I admire you for your wonderful attitude and outlook! Beautiful post 😀 xx

    Liked by 2 people

  48. Wonderful and very informative 😊

    Liked by 1 person

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