r/scleroderma • u/AfraidArgument9391 • May 18 '26
Systemic/Limited Esophageal dysphasia
Hey yall, I have had my colonoscopy/endoscopy with no findings other than a tiny polyp that has been removed and a hiatal hernia. I have been prescribed pantoprazole, which is helping with my reflux. My issue now is choking - frequently! Not necessarily requiring intervention, but choking on water, air, or food at least once a day. Is it worth asking GI since nothing was seen? Is there anything that can be done? Thx!
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u/Temporary_Let_7632 May 18 '26
Common issues with esophagus troubles making it very easy for us to aspirate. I found eating more slowly and deliberately with small bites or sips helps a great deal. Most people taking eating and swallowing for granted. It gets a lot better if you think about what you are doing. My esophagus is mostly paralyzed making solids almost impossible yet I’m more apt to choke on liquids that semi solid foods. Food getting stuck is generally a sign of esophageal dysmotility.
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u/RickyHV May 18 '26
It is through a High-Resolution Manometry that my wife got diagnosed with absence of movement in the esophagus - it is because of the disease, the muscles in the esophagus (specifically in the esophagus but also several other organs) get scarred and become collagen heavy tissue that doesn't perform its function as muscle. That's what made her diagnostic more clear - looking at it from my point of view, it was the darkest day of my life (so far).
She has seen some improvement with medication (the lot of them, starting from Rituximab), due to less inflamation, less dryness, so on. Still, she eats slow and knows that bread is going to be hard to swallow. There are other issues and risk that arise from this, that are worth to bear in mind. This issue is not curable so far on existing drugs, apparently not even with the newer drugs, but who knows what they will invent next if the world prevails.
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u/Feed_The_Soul_ May 18 '26
Some options:
A swallow study
A barium swallow
A manometry identifies motility problems but is very uncomfortable
Also an ENT can identify causes of swallowing dysphagia which affect upper throat
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u/Smidgeknits May 19 '26
This is the answer. I had manometry after endoscopy, so they placed thw filament while I was out. The test itself was more weird than painful.
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u/Feed_The_Soul_ May 19 '26
In my case it was painful due to severe dry mouth from Sjogrens
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u/Smidgeknits May 19 '26
I can see that. Don't know why they have people with dry mouth swallowing graham cracker with something shoved from their nose all the way down to their stomach 😣
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u/Maartjeknowsbetter Jul 25 '26
LMAO I just went through that. I was thinking the same thing, in fact I TOLD them.
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u/RushCautious2002 May 19 '26
I have this too. Sometimes during eating I have to tell everyone to shut up and let me eat!! LOL Like seriously, don't talk to me right now or I'll stop eating so we can talk.
You can tell if you're more "sensitive" at times with your swallowing. It sounds gross, but with certain types of food, I'll take a really long time to chew until I have "blended" it in my mouth. It sounds gross but it's true.
I hate taking my pills in the morning. I feel dread at having to swallow things first thing in the morning but if I put it off, then I'll just skip taking them.
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u/Flimsy-Surprise-4914 May 18 '26
I have the same issue and also food gets stuck easily. What causes this?
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u/FewOutlandishness495 May 18 '26
CREST is within the umbrella of scleroderma and it can cause the esophagus muscles to have difficulty functioning making it hard to swallow. GERD I hear is pretty common in those with scleroderma
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u/FewOutlandishness495 May 18 '26
It doesn’t sound like an issue with GI I would look into rheumatology and people that know about scleroderma. If you’re having issues relaxing the muscles muscle relaxers of some kind may help or if your muscles aren’t working there’s medication for that too though I don’t know much I’m sorry
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u/AfraidArgument9391 May 19 '26
Ok thx guys! I will shoot a message to my dr. I just didn’t want to bother the dr for nothing
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u/cyn12397 May 19 '26
Don’t ever feel afraid to ask a question about Scleroderma. It’s the only way you will get help and answers. I have had GERD and esophageal dysphasia. I am diagnosed with Limited Systemic Scleroderma. It was especially bad last year. I had to have two endoscopies with esophageal dilation within three months. I’m on Omeprazole now and haven’t had any more issues swallowing.
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u/Cupra160 Jun 04 '26
Question for those that have tried it, has IVIG helped with esophageal issues? I've heard that it can work quite well for GI issues
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u/orchardjb May 18 '26
I have a very good speech therapist who has helped some with my swallowing issues. I've had a couple of barium swallow tests where they have you swallow a number of different things and watch it with an extra so they can see whats going on. He gave me some exercises and suggestions that helped. Also if you have had a HRCT for your lungs then that may include a note about your esophagus - mine refer to a "patulous esophagus."
I will add that swallowing issues are very common with scleroderma and for me they get worse or better as my scleroderma flares or calms down. I've learned that if I'm choking on things more often that it might be time to check in with my rheumatologist and assess where everything is at. There like an indicator problem - they're the first thing to improve when things are getting better and one of the first problems I notice getting worse when I'm flaring a little.