WARNING: MIGHT BE TOO GRAPHIC FOR THE FAINT AT HEART...
I knew I was in for a very interesting test when I entered a hallway in the hospital marked "Nuclear Med"... thought, wow haven't seen this before!
Until last week I had never heard of a "Gastro Emptying Nuclear Testing"...if that little embedded word "nuclear" doesn't jump out at you as if watching a 3D horror movie nothing will, right?
Upon arrival, tech says to me you need to at least eat the part of the egg sandwich on this tray that he will prepare with a nuclear solution.
He proceeds to open a metal military looking box with red warning stickers on the outside of the container (similar to cross bone warning symbols.) Next, removing a syringe filled with the “mystery” contents he injects the liquid into a portion of the sandwich in front of me.
Then asking, "do you want to feed yourself, or do you want me to do it for you? Are you kidding me! Of course I want to feed myself... who doesn't? So I'm told if I'm going to feed myself I need to wear protective gloves and covering. Hum, so it's ok to eat the "nuclear liquid'.... swallow it into my body, and oh don't worry you won't absorb it, so no fear...
But, if you want to feed yourself, you need to wear protective gloves? Seriously? What is wrong with this picture?
It was explained to me there is no fear of danger from the injection because:
1. You are ingesting a very small amount...And who determines what small means?
2. The chemical isn't "absorbed into your body, you excrete it out in bowels"...gross right?
Note to self: Go home and consume extra dose of laxatives to get this removal process going ASAP! Of course, this isn’t recommended… but can’t blame a girl for the thought right? As a good patient, I eat the injected portion of my egg sandwich, a bit of canned peaches and drink some of the milk provided.
Next on today’s fun filled agenda I’m instructed to lie still for 2 straight hours on the usual x-ray table. Imagine a camera the size of a car tire being pointed directly at your stomach. This huge device will be taking photos of how you’re your tummy is pushing food into small intestine.
That brings up another entire horror, 2 hrs without a break! Of course about an hour into the test my kidneys said " Yes, I know you took me to the bathroom an hour ago" but WE need to go NOW!
So when the little guy came by next and said " how are you doing?" I replied, I REALLY need to pee! He said, yes that’s the hardest part...Are you kidding me? Tick tock tick tock
I am miserable at this point needing to pee. I'm thinking why have I been so stubborn to not wear the new "fancy panties" ...sorry, I have this hatred for the word "adult diapers"...
So I'm now thinking at least I wore a pad today, but it isn't positioned for lying down. I pear around and don't see the evil tech around and reach to try and tug the pad backwards a little. Hoping the camera isn't capturing this! I give the pad a tug, and feel the darn thing rip because for once the adhesive is holding on as if it's super glue!
At this point I'm beyond needing to pee in agony and thinking ok do whatever you got to do kidneys. Just go for it! And nothing! No matter how hard I try to tell my bladder let it rain, I cant despite the roaring agony I feel! Tick tock tick tock ... Tech says 38 min
Now not only my kidneys are raging but my foot spasms decide to start dancing. Have you ever tried to stop your toes from "twirking" with a tire on your stomach and your bladder is locked up in a protest against you?
Tick tock tick tock
8 minutes the tech announces ...
The longest 8 minutes I have ever been in!
Tick tock tick tock!
Finally, he cheerfully lifts the tire!
I blare at him BATHROOM NOW!
So, guess where I drove after leaving hospital...Straight to Rite aid for the purchase of my first package of "fancy panties"! l hope you all get a laugh out of this horror!
Ok, to the point of my question: Have any of you encountered "Gastro Paresis"? If so, can you tell me how you deal with it, and how you manage your diet?
I understand it has to do with how long it takes your stomach to propel food into the small intestine, and that MS is a known culprit to have abnormal function of the muscles in the stomach to process food properly...
Apparently, the normal range is between 60-120 minutes or as my Dr. stated normal is 90 minutes.... (Identifying the time it takes your stomach to move/empty food into the small intestine.) My reading was 836 minutes (approx. 14 hours... hum, guessing that's a little slow.. haha)
Here are the details of "what" it is:
Gastro paresis is a condition in which your stomach cannot empty itself of food in a normal fashion. It is caused by damage to the vagus nerve, which regulates the digestive system. A damaged vagus nerve prevents the muscles in the stomach and intestine from functioning, preventing food from moving through the digestive system properly. Often, the cause of gastro paresis is unknown. However, the causes of gastro paresis can include:
Gastric surgery with injury to the vagus nerve
Medications such as narcotics and some antidepressants
Rare conditions such as: Amyloidosis (deposits of protein fibers in tissues and organs) and scleroderma (a connective tissue disorder that affects the skin, blood vessels, skeletal muscles, and internal organs)
My Gastro Dr. had ordered the emptying test among other tests to understand what is going on in my system. I had a bout approx. 16 yrs. ago where I was choking on everything I ate and a blockage in the esophagus was cleared with a scope and small balloon. This has flared back again, but this time the esophagus isn't blocked when the upper GI testing was done a few weeks ago.
I have many bouts during the year where I am vomiting many times a day for weeks on end, and choking while eating. Recently I went through a session every AM and was to the point of coughing up blood due to the irritation and damage being caused to the esophagus. Having been on Reflux meds all this time now starts to present a problem, as there aren't many choices and your body builds up immunities over time to the first level of those meds.
I need to either be able to get it under control better through eating very small and easy to digest foods, or the next phase will be a more advanced sort of medications including Reglan, which are very harsh and difficult side effects.
There is no cure for Gastro Paresis and the long term problem if not controlled can lead to temporary or long term feeding tube placement, which I will fight with all I have to not advance if possible.
Each suffering person has to find the balance of eating the proper amount and types of food to keep your system allowing food to digest at a more normal rate. There are 3 levels of diet you move between given your current status to try and alleviate the severity of this disease.
Gastro Paresis, among other problems can be a door that Multiple Sclerosis opens just when we think we have things under control. We just have to take it one day at a time, and educated ourselves to handle each hurdle.
Thank you for laughing with me, through the path. Sharing information, helping others and telling our stories… seems to me to be the best way to be the strong Community we are!
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