I waited three months for a phone appointment with the top #gastroparesis expert / gastroenterologist in the country… but he forgot to call me.
I rang his secretary twice last week to confirm the appointment. I was supposed to see him at the hospital but I had to switch over to a phone call because none of the 25 ambulance companies I contacted would transport me there (too long of a trip).
Feeling gutted.
#MECFS #pwME #Dysautonomia #POTS #NEISvoid #ChronicIllness #disability
The phone appointment with the #gastroparesis expert was postponed to today after I called his secretary back yesterday.
It went very well! He knows #POTS and agrees that #Dysautonomia is probably the underlying cause of my gastroparesis. He talked me through the potential treatments (both pharmacological and surgical) and will review my case with my #MECFS & #POTS neurologist.
What a change to be listened to, for once.
He even told me that he didn’t blame me for not being able to come to the hospital for an in-person appointment because of #POTS. 😮
But of course good news have to come with bad news, don’t they?
The #gastroparesis GI doctor also reviewed the X-ray scan the nutrition department had me do last week at the hospital, to check that my nasojejunal tube is correctly placed in my small intestine. He saw that it’s crawled back into my stomach.
That explains why I’ve been struggling lately, but also, the doctor who follows (and gaslights) knowingly discharged me while she knew that my tube is out of place. I’m genuinely angry.
I asked the radiology department of the hospital for a copy of the X-ray scans that were done to check the positioning of my nasojejunal tube.
The scan on the left was taken the day after it was placed, and the one on the right 2 weeks later when I had my follow-up appointment at the nutrition department.
It isn’t hard to see that the tube has moved back into my stomach, is it? They discharged me regardless.
#MECFS #pwME #Gastroparesis #POTS #Dysautonomia #NEISvoid #ChronicIllness #Disability
I called the nutrition department again today and they repeated that they’re understaffed and don’t have a spare bed to hospitalize me. I have no idea if or when the tube will be replaced.
@CyruxiME @CyruxiME Hi, I'm sorry you're going through this - it doesn't sound nice at all. The tube looks like it might have turned back on itself in the most recent x-ray but I'm not sure it's quite back into the stomach. Could still be enough to cause your symptoms to get worse of course. (I'm an NHS doctor in England with ME/CFS)
I really hope things get sorted out for you.
@purple_shaman But looking at X-rays of nasojejunal tubes, it looks like they don’t overlap when they’re correctly placed. The tube clearly loops once it’s descended into the small intestine, not before. For example:
@purple_shaman To me, it looks like the tube was initially placed after the pylorus but not deep enough so it ended up coiling back into the stomach.
@purple_shaman Eh, I had a second opinion from a radiologist and while they admit it is tricky to tell, they are leaning towards the tube being in the duodenum.
@CyruxiME Yes, duodenum seems most likely. The tip is quite a bit below the gastric air bubble - you'd have to have quite a long stomach for it to still be stomach at that point. However, everybody is different. A previous scan would give a clue to your particular shape, but even then stomachs have a habit of changing depending on what's inside them and what way you've been lying....
@CyruxiME How you're feeling is also very important - in many ways more important than any x-ray result. I hope things improve for you 
@purple_shaman Oh, thank you! That could be possible, yes.
Initially, I got to know this because I had an appointment with a GI doctor who is the head of the only gastroenterology unit that is a reference center for GI motility problems (including gastroparesis) around Paris. He looked at the X-ray and was categorical about the tube being in my stomach.
I’ll have to wait for my follow-up appointment in 2 weeks to get a repeat X-ray.