Apr 28, 2016

Hello friends,


Last week, I saw my general surgeon who changed my jejunostomy feeding tube to a new one.  The replacement was so painful, and it’s done while you’re awake!  Basically, the doctors pull the old tube out of the stoma (hole) in my small intestine and stuff a new one in. 😉  Glad that’s over!  My feeding tube is nice and new now. 🙂  They didn’t have my tube size in stock, so we decided to try a smaller size….and it’s soo much better!  The raw skin around my tube site is now healing which is a huge blessing!


All the iron labs that my GI specialist ordered came back low…one of them is almost down to zero..  So I have to get 5 weeks of IV iron infusions to correct this iron deficiency anemia.  I have daily headaches, dizziness, and pale skin from being anemic, so I’m looking forward to feeling a little better soon.  It will take a while for my red blood cells to make new ones with the iron, though..


This past Tuesday, I had a monthly follow-up with my GI specialist.  I’m still having painful intestinal spasms, so he ordered an anti-spasmodic medication for me to try.  He’s also having me try this new medical supplement to see if it can help some of my GI symptoms.  They’re capsules with lots of super tiny beads of ultra-purified peppermint oil. 🙂


I’m still working on increasing my j-tube feeds, but it’s slow progress.  Anemia on top of mitochondrial disease makes me extremely tired, so the motility in my whole GI tract has been poorly lately.


When I was in the hospital for sepsis last month, I mentioned how the doctors ordered a lumbar spine MRI.  Well, something was found on the scan that wasn’t there before (for those who like the medical jargon, it’s called a spinal nerve root sleeve cyst….), so my pain dr. referred me to an OHSU spine specialist.  More doctors to see… 🙁  I hope he can help figure this out as I’ve been experiencing some new and painful symptoms.  The appointment isn’t until May 24th, though.


Soo true.


P.S. I’m loving the new look of my blog. 😀  Thank you again so much, Curtis!! <3  Love you!

Post written byKerissa

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