Monday, December 5, 2011

Cardiologist / Internist / Gastroenterologist (?) Appointment Outcome

Hmm I thought I had already posted about this appointment but for some reason it didn't go up.  So here it goes again (shorter version as I had to remember it all to type it up!) Well I headed back in to see Dr. C. to go over the barium swallow study and ask a few questions.  Long story short -

- She says I have a 'lazy stomach' aka delayed gastric emptying aka gastroparesis.  Basically food is sitting too long in my stomach and not passing through my system for way too long (this is probably also why it took a week for the barium from the study to pass through!).  The barium study showed food particles left in my stomach and by taking that fact, the constipation issues, the severe heartburn, the very often nausea and the fact that I have absolutly no desire for food and can only eat items in very small quantities (like if I eat 1/4 of a hamburger at noon I am full for the day and don't feel any hunger except for slightly at bedtime which passes with very minimal food intake). 

She doesnt seem to think that I need to have an endoscopy (based on the swallowing issues alone) but agrees that it is best to do one.  She is also going to use a balloon to try and open up the esophagus to see if that will help with the swallowing problems.  Going over the sheet that needs to be filled out, she wrote a pile of notes on it!  Everything from "Get a good nurse - hard IV access", to "No beta blockers - keep check on pulse and bp" and finally "NO Xylocaine".  There was a minute there that she was trying to argue giving me the local anesthetic anyways to help relax the gag reflux but finally relented when I told her about my history with locals.  She seemed surprised when I asked about taking a beta blocker before hand and asked who told me that I shouldn't and then I had to remind her that she told me to stop them before surgery because the fasting messes up the autonomic issues and my bp bottomed out last surgery.  Not only am I to not eat anything after midnight the night before but she also wants only liquids (salty liquids at that) the entire day before so she can hopefully get my stomach actually empty to do this test.  She mentioned that she is a little concerned with the fragility of my body tissue especially as she wants to do a balloon to check for any strictures (I think that is what she said).

And finally, I convinced her to change my beta blocker medication but keep the same equivilant dose.  It was a tough fight but I finally got her to acknowledge that I knew my body better than her and that I was coming up to tolerance with the one I was on and wanted to switch to a new one before I became tolerant to it so that dosage increases don't have to occur.  She was firm that switching the medications wouldn't do anything but mom and I both told her that in the past it does.  It's not necessarily the active ingredient but something makes them work better when they are rotated out (like all my other medications).  On the autoimmune front she wants the tests re-done and seemed to just dismiss all the autoimmune issues I have been having and told me that I need to find a new rheumatologist (well duh!!!!).

But I got my meds switched, the endoscope ordered (not til january though, don't want to have it done around Christmas as there is so much traveling and I have enough eating problems to deal with as it is) and I got yet another pretty title to add to my evergrowing list of disorders.  This is a very common issues in EDSers though so it's not a shocker at all.  What sucks though is that she didn't give any suggestions at all at what I can do to help those issues.  How can I get more food in when I don't want to eat (if I try to force myself I reach a limit where if I take another bite I literally throw up), how can I swallow food, is there something that can help with the digestive issues, is there possibilities that there are actually food allergies that are making this issue worse?  All questions with no answers.  Seems thats all I get anymore - Just more questions with no answers in sight.

My mom is slightly happy though that there is finally something we can tell to peolpe when I go for a meal and can literally only eat two bites.  She looked it up and was surprised at just how many of the issues I actually was having (she used to question the 'severe' part of the relux that doctor's always tack on).  It shows why I don't want to eat, why I CAN'T eat and more.  And of course it is just my luck that the ONLY symptom I don't have is weight loss :( That's one side effect I wish I had (especially after the appointment I had today!!! But more on that later!)

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