Confused and upset- scleroderma and esophagus

[AnimalLover115]

Hello,

I hope everyone is staying warm if it is winter where you are ❤️

I am reaching out for support and possibly simalar experiences...

Yesterday I went to see a GI specialist after getting test results back from my esophageal manometry that was done. I've been having a lot of stomach upset, acid reflux and some painful swallowing. I was surprised to hear the doctor say that there isn't any peristalsis in my esophagus and my lower esophageal sphincter is constantly open. The doctor said that he is sorry that my "scleroderma has gone to my esophagus". I'm confused because my rheumatologist never diagnosed me with scleroderma along with my connective tissue disease. I was trying to process in the moment so I didn't think to ask if they saw any thickening in my esophagus, or if he is just speculating. I asked about surgery, but he said I am not a candidate because my esophagus is so weak, that if they tried to fix my open valve, food would get stuck in my upper esophagus. I'm going to be starting on a medication, I think it was called prucalopride, to hopefully imporve the motility in my esophagus, although I am not looking forward to the side effect of diarrhea Unfortunately, I already have that problem and the doctor ordered a breathing test as well because he also suspects that I have bacterial overgrowth in my small intestine.

Thank you for listening and for your support!

[KayHimm]

AnimalLover115 -

I had an esophageal manometry done years ago and also showed decreased peristalsis. I am not nearly as severe as you and controled with Aciphex.

You ask a great question about whether esophageal dysmotility implies a scleroderma feature. I do not have scleroderma antibodies nor a positive nail capillary test.

I know scleroderma can causes severe GI issues. Could the GI specialist have noted features on the exam? Your rheumatologist may see no other SS features.

I completely understand your confusion. I think either doctor can give you an explanation.

Really hope that medication helps you.

Kay

[AnimalLover115 in reply to KayHimm]

Thank you for your reply, I will definitely be asking my GI specialist this when I have my next appt in three months

[KayHimm in reply to AnimalLover115]

There is a forum member who just posted about severe lupus related esophageal dysfunction. If you don’t see the thread, I will find it. Lupus causes all over so, yes, you need to have this clarified. Who knows? Maybe the doctor’s mind was on scleroderma because he sees more of that with his specialty in doing esophageal manometry.

Please let us know what the conclusion was.

Xxk

[AnimalLover115 in reply to KayHimm]

That is very possible. Perhaps he was just trying to put a name to it. I'm definitely going to ask for a diagnosis... I just want to know what is going on and a diagnosis would be very helpful as well for documentation for university accommodations. I can't seem to find tht post... if you could possibly find it that would be greatly appreciated! ❤️

[KayHimm in reply to AnimalLover115]

I don't see the member’s response. Will keep looking. You might want to post specifically about esophageal dysfunction. I bet you will get a lot of responses.

Best of luck

Kay

[OldTed60]

Hi there. Sorry that you’ve had this experience. I think what they mean is that the muscles have been affected by vasculitic fibrotic changes rather than just skin thickening. This could be the Myositis part of MCTD or scleroderma perhaps rather than scleroderma or Myositis full blown. A GI dr may not have been able to distinguish so just said scleroderma to you because it’s the one known to impact oesophagus most severely. Sjögren’s too can cause thickening and nerve damage in oesophageal passage due to lack of healthy secretions.

I have systemic sclerosis and Sjögren’s and severe GI motility problems from head to tail associated. There is a good HealthUnlocked scleroderma (SRUK) community here - a bit quieter - but more disease specific info. Take care 😊

[AnimalLover115 in reply to OldTed60]

Thank you for your reply and explanation, I appreciate it

[cowhide]

Hello Animal Lover,

Sorry to hear of your distress, but at least it sounds as though you are in good hands. I cant comment on MCTD and the GI tract, but certainly the changes that you describe are very common with scleroderma and identical to my own. (I have limited systemic sclerosis). This is not necessarily 'thickening' in the GI tract but loss of muscle tone and function due to connective tissue changes and is very common.

I am not on the medication that you mention, just high dose PPIs for acid reflux, and intermittent antibiotics for SIBO, but remember that not everyone gets side effects!

[AnimalLover115 in reply to cowhide]

Thank you for sharing. I will soon find out how I will react to the medication. Oh yes SIBO is what I meant, I will be tested for that as well.

[Wytchylady]

Hi. I can identify with the reflux, GI inflammation and swallowing problem.After 5 endoscopic investigations it was noticed that I wasn't swallowing due to peristalsis not working. Between the GI specialist and the Rheumatologist the diagnosis was irreversible damage due to Lupus.

There's no fix, too far gone for it but was advised on how to manage it, the GI consultant gave me the same advice given to people with permanent damage post strokes.

I've learnt to live with it.

I sleep propped up because I was choking in my sleep due to not swallowing, and I manage what I eat to avoid choking.

The joys of AI conditions X

[AnimalLover115 in reply to Wytchylady]

Thank you for sharing, your symtoms sound simalar to mine. My rheumatologist said that I have several characteristics of Lupus as part of my MCTD include a malar rash, fatigue, skin rashes, mouth sores, photosensitivity etc. I also sleep propped up and the GI doctor said to eat small amounts at a time and drink liquids with meals. I also have chest pain and the GI doctor said this could be related? I want to ask what my diagnosis is... I have a feeling he would say something along the lines of irreversible damage due to connective tissue disease. Take care.

[Wytchylady in reply to AnimalLover115]

Fingers crossed for you that there's something they can do X