How to Endure the Torture of Esophageal Testing

Lisa Weber avatar

by Lisa Weber |

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When something gets stuck in your throat, you’ll do everything imaginable to dislodge it. That’s why when someone intentionally threads a tube through your nose and down your esophagus, you really have to fight all of your basic instincts that want to remove it.

Scleroderma can wreak havoc on the digestive tract. To monitor the damage, doctors often ask patients to do an esophageal manometry and a 24-hour esophageal pH test. For these tests, a metal or plastic catheter is placed into the nose and then threaded down into the stomach. The patient not only is wide awake for the entire procedure, but also must assist by swallowing the catheter as the nurse nudges it down.

How do you get through a test like this?

I loathe this test more than any others. There’s no way to sugarcoat it. It is a horrible experience that takes significant inner strength to get through. Each time I have to do it, I get a little better at walking myself through the procedure. Knowing what to expect helps me mentally prepare for it.

Snorting and gargling antiseptic

If you must have one of these tests, it will start with a syringe shooting a jelly-like fluid up your nostril. At the same time, you’ll be asked to sniff as hard as you can. Do it! Get as much in there as you can.

It certainly isn’t natural to snort fluid, but you will be grateful afterward. Remember, a tube must go in there, so get it as numb as possible.

After making some awkward faces and shuttering a bit, you’ll get a tiny cup filled with the same liquid you just inhaled. This time, gargle it for 10-15 seconds. Get it as far back as you can, and let it numb your throat. Your gag reflexes will be easier to manage if you embrace this step.

The first tube goes in

The nurse will lube up the end of the probe and insert it into your nose. I have no way to prepare you for this. It is far more uncomfortable than it is painful.

Close your eyes and do something that relaxes you. I like to count. I tell myself to focus on counting slowly to 10. I find that this helps me remember that it won’t last forever.

Once it reaches the back of your throat, you’ll look down and begin to sip warm water and swallow. Take little sips. The more you swallow, the faster the tube will go down into your stomach, and that’s when you’ll get a slight break. At this point, I start counting again.

Next, you will lie on your side so that the machine can get accurate readings. This part goes rather quickly.

The next thing you know, the nurse will pull out the catheter. Remember all that disgusting jelly you swallowed? It helps to numb you so you don’t feel the catheter as much when it’s removed.

The second tube goes in

You will then have another tube inserted, but it will be skinnier than the previous one. Once it’s in place, it’s then taped to your nose, where it will remain for the next 24-48 hours.

I urge you to have someone drive you home. It’s normal to be emotional after the torture you’ve just endured. And you have a foreign object lodged in your neck!

Columnist Lisa Weber PH study

Counting to 10 repeatedly is one of the ways columnist Lisa Weber gets through a challenging 24-hour pH test. (Photo by Lisa Weber)

It feels stuck

Have warm liquids ready to sip. The heat will help make the plastic softer and more tolerable. More importantly, do not let your body try to dislodge the tube from the back of your throat.

It will feel like it is stuck. You may even start to worry it will choke you. But choking is impossible, because the tube is down much farther than you think.

Your gag reflexes will battle to get it out. Now’s the time to be mentally strong! Fight the urge to free the tube. Calm yourself.

If it becomes too difficult to bear, remain still and breathe slowly. The feeling will pass. I like to plug my nose with tissues so that I don’t have to blow it, and I chew on a washcloth. The less you swallow, the easier it is.

When you eat, take tiny bites. Chew as much as you can before you swallow. It will feel like food got stuck, but it’s just your body reacting to the tube again. The more you try to squeeze your esophagus, the worse the feeling will get. The best advice I can offer is not to fight it. Yes, it’s torture, and it’s OK to cry. But the more you struggle against it, the tougher it will be to get through the night.

This torment will end. Set small goals, such as making it three more hours. Then set another small goal. Remember that it’s not permanent.

Once the tube comes out, you’ll feel instant relief. It’s like waking up from a nightmare knowing that tomorrow you will be brand new. You are stronger than scleroderma, and this is just one more way you get to prove it.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Jenny Gamble avatar

Jenny Gamble

Lisa Weber you are amazing! That word is not enough to describe you. The perspective that you give not only helps to comfort and prepare others with Scleroderma but you give loved ones of patients a way to understand things that the patient themselves can't or won't convey. Sometimes they don't want to give their loved ones anything else to worry or feel sorry for them about. This is the second article that I have read that you wrote and I can't thank you enough. I lost my mom to Scleroderma when I was eleven and I can't ask her the questions that adult me has. You have touched me in so many ways. Your kids are so lucky and I'm sure proud to have such a courageous mom.I know I was.

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Lisa Weber avatar

Lisa Weber

Jenny, I’m so sorry you lost your mom to this awful disease! I love that you remember her as a fierce fighter- that was a lovely gift she gave you.

I’m glad my words help you better understand this disease. That brings me great joy. I also appreciate all your kind, supportive words. You actually brought tears to my eyes. I can feel your concern. Thank you!

All the best to you and your family!

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Katrina Young avatar

Katrina Young

Super article. I haven't had the test yet, but I guess that maybe I have that to look forward to. Your comments were extremely helpful and encouraging, and I shall remember them if and when the time comes to have this rather grim procedure.

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Lisa Weber avatar

Lisa Weber

I hope you never need this test, Katrina. Not everyone with Scleroderma needs to have it done. But if the day comes, you’ll be okay! Autoimmune fighters are the toughest group of people I know!

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Sandra Avery avatar

Sandra Avery

I had this test done several years ago. Two different nurses or techs tried to get the tube in and could not. We had to wait for my Gastro Dr. to get out of surgery and do it himself. The last time that I was in his office he said that we might need to do it again. I usually have my esophagus stretched at least once a year, but have not been in his office since COVID. I am trying to wait this out but might have to go.

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Lisa Weber avatar

Lisa Weber

Oh Sandra that’s awful! Nothing seems to be easy with a chronic illness. Praying for you!

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Elizabeth Levy avatar

Elizabeth Levy

Thank You SO MUCH for your specific, in-depth information for those of us with dss! You inform us exactly as we will need to know when we have this done. Yes, it is scary--but yes, it is absolutely necessary, and no one else will give us this information.
Bless You, Lisa!!!

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Lisa Weber avatar

Lisa Weber

Elizabeth, that you for your encouraging words! What we imagine in our minds is sometimes scarier than knowing the truth! Fear of the unknown is a real thing! I hated going into this test, not knowing what to expect. I hope it helps others too!

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Carol Langenfeld avatar

Carol Langenfeld

I have never had the 24 hour part, but three times in the last 40 years I have had the first part. Never have I had the numbing treatment, as far as I am concerned it is pure torture! Thank you for sharing, it is nice to know I have a fellow struggler.

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Lisa Weber avatar

Lisa Weber

Carol, I’m sorry they didn’t give you the numbing gel! Some people are allergic, so maybe your office doesn’t offer it for that reason. With or without it, it’s a tough procedure! And to do it three times, we should win some kind of award!

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Bruce Colin Stuart avatar

Bruce Colin Stuart

I was supposed to put 5 stars for the article but mucked it up

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Lisa Weber avatar

Lisa Weber

No worries, Bruce! Thank you for letting me know you gave it 5 stars. Very much appreciated!

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Twila avatar

Twila

Awesome article Lisa. You describe it perfectly! I wish I would have read this before I had mine to know what to expect. It sure is one of the worst things to endure....I admire you if you've had more than one. It's one thing I said I would never do again.

I appreciate how you captured the reality of it and gave ways to manage through it. You are right that Autoimmune fighters are the toughest. Keep fighting.

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Lisa Weber avatar

Lisa Weber

Twila, once is enough! I beg them to not put me through it. But my doctor is more stubborn and ultimately wins. Keep fighting and stay strong!

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Edith McKinsley avatar

Edith McKinsley

Thank you, Lisa for sharing this experience. I am having oesophageal issues and dread getting this test. I appreciate your explanation and how you cope. Not only that, but I will print this information. If nothing else it will remind me that I am not alone and if you can do this so can I. Take care lovely lady thanks a million.
Edith

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Lisa Weber avatar

Lisa Weber

You’ve got this, Edith! You are not alone. Best wishes to you!

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AJ Ferguson avatar

AJ Ferguson

I'm so happy I found this website. This woman is an absolute warrior. I have been sick all my life, and was diagnosed with hodgkins lymphoma from 2005-2010 and went into remission. But then my symptoms that were supposed to go away got worse and my body was attacking itself in new ways on the regular. After 4 years of lots of doctors who gave up on me I fi ally got my diagnosis of system scleroderma 3 days ago. This will be a test I need along with a lung test. Thanks so much for the heads up. This makes me feel a little better!

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Lisa Weber avatar

Lisa Weber

Wow, AJ! It sounds like you’re the warrior! You’re in what I call the testing season. It’s a bumpy road, but things settle down once they are done with this round of testing. Hang in there! You’ve got this! Stay strong and know you are not alone.

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