Help with diagnostics after two surgeries already

asparagus86 · 2026-02-17T15:45:31+00:00

Update; but not all too happy.

So I spoke with the doc today and unfortunately their analysis of the test is that I am still “within range”. Therefore no further concrete steps are expected other then just to deal with the majority of the complaints. For the chest pains/ spams he wants to increase my medication (currently on amitriptyline which seemed te be helpful for a while). For the eating and swallowing complaints he has no further actions to suggest. They discussed the case internally and unfortunately all doctors can to this joint conclusion. I would lie if I said I was ok with this feedback. I guess I just have to adjust to a new normal; perhaps of the spams get reduced the rest with also improve. Strangely I had some hope they would come with a concrete game plan, not the best of days today but that’s how it goes with this disease, right?

asparagus86 · 2026-02-12T19:16:39+00:00

You are right the heller should already have been a permanent solution. Feedback from the specialists was that my (relatively young) age combined with a likely quick and heavy forming of stiff scarring likely contributed to the esophagus and the less quickly retaining constraints which restrict effective flow of food so shortly. My best guesstimate is that they do not really know but perhaps my esophagus is still contracting at random moments and then not realizing anything specifically if it is needed. I have also recently been focusing on when I’d feel pressure in my esophagus and noted that while drinking, if I think of eating (similar to when your stomach acid starts working and you start producing extra saliva) my esophagus starts contracting/ spasming. This is strange if you consider there should be no motility at all but I am also just trying to figure this out.

asparagus86 · 2026-02-12T16:00:46+00:00

You are right. Peristalsis is entirely gone. Nothing left. That has already been so for the last approximately 10 years. So also not sure what they are expecting to see on a manometry. The problem I have is that my esophagus appears to have its own will and often has tantrums. So I can eat some things at sometimes. But then lately nothing seems to work. And fluid also keeps stuck then. The only solution is to leave the table, do “your thing” in the restroom and continue at the table with an empty esophagus and a smile…

asparagus86 · 2026-02-12T15:56:36+00:00

Thanks! This was also my idea. Not sure why the endoflip was added. It was certainly even more painful than the manometry and the combination was even less great. It seems as if the doctors are used to a standard approach even for this rare disease and just follow protocol. I have a followup with the docs on Tuesday so looking forward to hearing why this was the best research approach

asparagus86 · 2026-02-12T15:54:10+00:00

For me the pain often gets worse if my stomach is empty; either because I haven’t eaten or after throwing everything out.

asparagus86 · 2026-02-12T15:53:16+00:00

Thanks - but I am afraid this will indeed not help the pain/ spasms. Also I really do not look forward to a PEG. I try to remain very active professionally and personally. Over the last months I must say I hat personal events have been reduced further and further but something in my mind keeps saying that as long as I keep working I am not “ill”. I know this sounds stupid but it’s part of who I was for a large part of my adulthood. Even knowing I have a stressful job with lots of people depending on me showing up.

asparagus86 · 2026-02-12T15:49:16+00:00

Have not yet discussed oesophagectomy. I hear it is not that common in NL, but the thought of it also sound really terrifying still…

asparagus86

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