Just a very relevant quote

What we know is not much. What we do not know is immense.
-My math book


#chronic, #gastroparesis, #medical, #quote

EnFit is awesome!

Different medical devices have their own specialized tubing connections. IV tubing only connects to other IV tubing. Trach connectors only connect to trach things. All except enteral tubing! Enteral tubes use oral syringes that aren’t specifically for tubes. But most importantly, feeding tubes use a universal connector called a christmas tree adapter. Believe it or not, sometimes in hospitals enteral devices get plugged in to things such as IVs or trachs. This is called tubing misconnection, and it can be deadly. Formula could literally fill a lung or be pushed into an IV! This is because christmas tree adapters are so versatile that they literally fit almost anything!

Image from FDA

The solution is pretty awesome: Enteral tubing connectors get their own specialized bore size! It will be impossible to plug these connectors into anything but feeding tubes! EnFit got FDA approved four years ago and has a whole plan to implement their system.  Not only will this prevent unnecessary deaths do to tubing misconnection, but it will also be really nice for use at home. All the connectors will screw on to each other, so they won’t suddenly pop off like they do right now.

Image from qosina.com

Image from Shield Healthcare

There will also be specialized EnFit syringes.

Image from Shield Healthcare


I am so excited for these changes!



For more information:





#awesome, #chronic, #cool, #enfit, #feedingtubeawareness, #gastroparesis

I got a new diagnosis

I just got diagnosed with Mast Cell Activation Syndrome! This is cool because now they can start to work on treating my allergies!!! They started me on two mast cell inhibitors called cromolin and ketotifen. I have no idea if they are helping, but at least we are trying something!

Update on being admitted

I was admitted Friday at 2 and discharged Saturday at 4.

I had a HUGE room!

The endoscopic procedure fell through because it didn’t get scheduled like we thought and it was already the weekend by the time we found out. We went through with the intestinal cleanout anyway, though.

My veins are getting increasingly more fragile and hard to access, probably do to the EDS symptoms. They did an IV on my right hand on the left side of my wrist by my thumb. I had it for about two hours and the whole time it sent shooting pain up my arm. They later concluded that it was touching the radial nerve. When they took that one out, they tried on the base of my left forearm. They couldn’t access that vein so they tried the right arm in the same location. It worked! I highly recommend getting IV’s in this area. Also, I am allergic to lidocaine, so they used something called bacteriastatic saline to numb where they were putting the IV in. It helped a ton! I normally don’t have any numbing and they have to wiggle the needle around a good amount, and this really helped. They gave me tons of fluid throughout the cleanout! My eyes got so swollen they were difficult to keep open.


After they placed the IV, they started the cleanout. I am lucky to have a tube, because they ran GoLytely (super strong MiraLax) ramping up to 500 ml/hr from 6 or 7 PM on Friday to about 5 PM on Saturday for a total of 12 liters of laxatives! Granted it was the quickest cleanout I have ever done (I’ve done 4 in total (!!)) They gave me an awesome heating pad for my abdomen because the GoLytely made me so bloated I kind of looked pregnant!



I had the WORST on call GI! He doesn’t even believe in motility issues and is so condescending!

When the cleanout was done, they did an X-ray do ensure there was no impaction remaining. There wasn’t so they sent me home.

I am now waiting to schedule the endoscopic  procedure outpatient.

So it was an insanely short but certainly not sweet admission.

I have to be admitted

I have to be admitted to the hospital tomorrow. They are going to do an IP cleanout, replace my NJ tube, and do endoscopic injections of Botox into my pyloric sphincter. I think I might blog about it, but I might forget.

The pool is my happy place

The pool is my happy place. This is for a whole host of reasons. They are as follows:

  • Swimming takes my mind off the pain
  • Swimming helps with motility so it helps with the pain physically
  • I don’t get dizzy in the pool
  • Exercise gives me energy
  • Swimming makes me feel free
  • Swimming has nothing to do with food
  • My joints aren’t as bad in the pool
  • Swimming is fun!

The pillow anyone with chronic pain should own


picture from bed, bath, and beyond

This is the best pillow ever! It is the pillow that I curl up with when I feel horrible. I put it in the corner of my bed and then put my pillow over it. Laying on this pillow is the only way I can get comfortable. I have had mine for five years, and it has held up really well. I highly recommend it for anyone with chronic pain. Here is the link: