Let me start by saying that I've managed to avoid an ER for 4months and 1 day!!! Considering I used to be there all the time, this is awesome.
What's not so awesome is my silly GI system.
I've been refluxing like it's nobody's business for the last week. I haven't been getting hungry and am back to easily going 24hrs without food. If I do eat, I feel nauseous and gross with non-stop reflux. The reflux also happens on an empty stomach, it doesn't seem to matter what I'm putting in my body. The same can be said for putting anything through Jerome including my fluids concoction that I NEED to be on. This is exactly what happened before, except I wasn't using the Joey-pump. None of the natural stuff seems to be working either :(
The dysautonomia has been a little strange for the past two weeks as well. I've had all the symptoms going on, but thankfully not all at once. Last week it mostly low BP, dizziness, brain-fog and tachycardia. This week it's mostly sleep and GI stuff.
Thanks to EDS this makes things very complicated. Here we go....
I need my fluids concoction to essentially survive, but I reflux it which means that I sometimes choke on whatever is coming up. That's not cool when you have dysphagia and a history of aspiration pneumonias (5 of 'em). It also means whatever I'm putting through J isn't being absorbed properly which messes up the dysautonomia. It's also not like I can be on the fluids at a slow rate for even longer during the day,because I blow through it so fast and that would make me even more sick. We learned that at Chateau Sinai when I was getting worse because they were brilliant enough to not listen, and thought 100mls/hr of fluids was enough to sustain me when I need 300mls/hr. On day 4 they finally listened, and waddaya know...things got better.
I definitely know this isn't hormone related unless I'm producing relaxin when I shouldn't be. Othersiwse, I'm out of theories. We do know that the sphincters that keep everything down are shot, and no medication has ever worked.
So here's what I'm thinking...
Ideally, I'd be admitted again and thrown on IV fluids and TPN
http://en.wikipedia.org/wiki/Total_parenteral_nutrition. Then I'd be hydrated and would avoid wasting away while we give my GI system a rest and check it out. Let's not say it's ideal, but rather practical. Then I'm also thinking of fighting to get a Nissen Fundoplication
Having to go on TPN while inpatient is common among the bendy community. At least I'd be normal that way.
We've done everything else including a J-tube to avoid the reflux...Getting the fundoplication would mean I won't reflux and aspirate on whatever is coming up, decrease the risks of esophageal cancer and food will stay down. I also wouldn't be able to vomit. Then, I could get just a plain g-tube put in which would make life a lot easier because I won't need day surgery every time it needs to be replaced and I could do it myself at home. The whole not being able to vomit isn't too bad, because I'd have the tube that would act as an exit. Yep, it's possible to barf through a tube. The other benefits include less exposure to radiation because it's less time in interventional radiology which has to be done anytime they do anything to a J-tube. I'm sure my insides are glowing from all those scans and fleuroscophies. I also will be able to avoid sedation a lot more. Don't get me wrong, I love the drugs but they're just not good.
The biggest bonus if I get the whole thing done with a g-tube, is that I can puree my food and put it in. I'm getting food allergy/intolerance testing done in June, so with whatever happens with that, my diet can be customized which makes a healthier me.
This is something I've brought up before, and they said no. However, we've pretty much run out of options and I'd like to go back to not feeling like complete ass. It was nice.
Waddaya think? Any feedback would be appreciated. Cause' I don't know what else to do.
Otherwise, my body seems to be co-operating and staying together relatively well.
p.s. Food is over-rated.
What doesn't kill you....
6 months ago