What is Gastroparesis?

Gastroparesis is also known as "delayed stomach emptying". It is where the stomach doesnt work to digest the foods you eat as quickly as they are supposed to, or at all.
Symptoms include feeling fullness after eating little, nausea, vomiting, etc.
It effects over 5 million people in america, yet very little is known about it. There is no cure, and it is a chronic illness.
Imagine the feeling of eating thanksgiving dinner times 5, then vomiting 10 times worse than your worst stomach flu, followed by extreme fatigue for days.

Monday, August 30, 2010

daily diary

today i am still nauseas all day, but trying to eat.
i managed half an ensure
a couple bites of italian creamy chicken with noodles (mostly just noodles)
a couple bites of cobbler
one bite of a baked potato
after the baked potato i felt very sick, im sure im about to get another flare up tonight.
hopefully the phenergan i just took will stay down.

Sunday, August 29, 2010

daily diary

catching a cold, so i took it easy today.
food:
ensure
little bit of soup
some noodles with creamy italian chicken

Saturday, August 28, 2010

daily diary

last night i actually felt ok and was able to fall asleep without needing anti-nausea drugs, I woke with a terrible stomach ache that kept me from eating, or even really doing anything.
I spent the day walking around (newly remodeled school) and got really exhausted really fast.  I didnt eat anything till after.
food:
little bit of iceburg lettuce with baby tomatoes (bad idea but it looked good) with italian dressing
chili mac
raspberry lemonade.

i dont know the calories, but i doubt it was much.  I did terrible today.
Tomorrow I am going to aim for 800 calories. Hopefully I will feel well enough to do it.

Friday, August 27, 2010

daily diary

Last night I was completely nauseas, and took phenergan.  Took forever to finally fall asleep because I kept dry-heaving, but managed to sleep.
Slept- 7 hours
Ate-
half an ensure- 75 calories
peanut butter and honey on white bread-175 calories
gatorade- 80 calories
total: 330

My Brain on Sick

When I get a "flare up", that is, when I start vomiting like none other and wish death would finally just come to take away the misery, my brain becomes only half-coherent.
It doesnt connect things together the way it normally would, its like I am in a dream state, though I am still awake.  I'm aware of what is going on around me, but I start having hallucinations and strange thoughts go through my mind.
Usually the vomiting starts in the evening for me, so I spend that time in bed, with my head leaning over the side into the garbage can.  I can't get comfortable any other way.  I feel extremely nauseas, on the verge of vomiting if I am not over a garbage or toilet, but as soon as I reach the toilet or garbage, the nausea isn't as strong.  It's more comfortable in a bed over a garbage then leaning against a toilet, so that is where most of my vomit takes place.  I always have tissue, water, and anti-nausea pills ready on my bed stand, because I never know when my flare up will happen.

So step by step of what happens during a typical flare up.  I begin to feel extremely nauseas, on the verge of vomiting, and just the thought of what is about to come drains me of any energy.  I go to bed, laying on my side.  I prop my pillows so my head and shoulders are propped up, and on the edge of the bed.  I make sure garbage is below and i rest there.  I take a promethezine if I think I can keep it down, but usually swallowing that is what brings on the vomiting.  Between vomiting, , my brain becomes completely muddled, and I cant tell if I am drifting in and out of consciousness or not.  Its like when you are sedated, except you are having extremely vivid dreams that don't ever make sense (ever been pregnant? those kind of dreams!)  I chalk it up to my misery and dehydration.
After several long hours of vomiting every 20 minutes or so, I am wishing I could actually rest and fall asleep.  I keep drifting asleep, but once I actually fall asleep, I am woken with the urge to vomit again.  This lasts usually till early morning, till I get so dehydrated (probably should be hospitalized but no insurance) I literally pass out because I am just too weak to go on.
When I wake the next morning, I am usually extremely weak, but I feel well enough to get down the promethezine (phenergan, anti-nausea pills) and some small sips of gatorade, and start the process of rehydrating myself, sleeping/resting, and just over-all thanking God I survived another night, despite the prayers of wishing it all would just end.

Thursday, August 26, 2010

Want to know a secret?

I keep getting this feeling, that my days are numbered because of this illness.  I'm not sure how long I will last, but I cant imagine longer than 20 more years.  Perhaps not even more than 5.  I don't tell anyone, because I want to stay positive, put on a strong face, and not worry others.  I can feel my body getting weaker every day, and it's the only thing that is ever on my mind.
Once the project access program stops, that's it for medical treatment for me.  No more medications, no more doctor check-ups or tests.  I'll be back to square one, of suffering constantly.  Like I am right now, and if i dont get treatment soon, with how I am going right now, I could be dead within months.

My hair is thinning out.  My body has no fat.  My muscles are wasting away even, they seem to hang off of me now.  My ribs and pelvis bones are sticking out.  I have no energy.  I rarely eat.  Every time I stand up, my vision blurs/blacks out, my knees go weak, I get extremely dizzy, and sometimes I even pass out.
I weigh less than I did in high school, and people thought I was anorexic back then.  I weigh 25 lbs less than I did when I was married, and I know I looked my best at that time.

I'm going to die.

My Story

I have gastroparesis.  I havent officially been diagnosed yet, i havent discussed it with my doctor, but i took the gastric emptying test, and the results showed i had delayed stomach emptying.
I dont really know how long I have had this illness, perhaps my entire life.  I remember growing up feeling nauseas quite often, not wanting to eat, and even getting the "stomach flu" more often then most people.  I didn't think anything of it because it was normal for me.  I couldnt remember not getting sick.
I finally realized something must be wrong with me around Christmas of 2009.  I had gotten sick before thanksgiving, and then again on Christmas day, spending them in the ER due to dehydration from extreme vomiting and nausea.  I had been to the ER several times before in the past year for the same reasons, and it finally hit me that it's not possible to be getting the flu that often that close together.  The doctors never did testing, they just sent me home after getting some fluids and anti-nausea meds in me.
Back in 2007 my gallbladder was removed, so i knew i had digestive problems from that.  I blamed my illnesses from my childhood on that even.  I was wrong.
Once I realized I was sick, I decided despite not having insurance, that I really needed to see a doctor.  I was getting these vomiting episodes more and more often, and was constantly nauseas, losing weight, and could hardly eat anything.  I finally heard of a program called "project access" that consists of many doctors willing to see you for free.  The only problem was that you needed to be referred onto the program already having a diagnoses.  I found a low income clinic and went there, where i was referred to see the same dr that removed my gallbladder.  He recommended an upper endoscopy (putting a camera down my throat to view my stomach and esophagus) and referred me to project access.  Problem was there was a 3 month wait.  So i waited.  After 2 months of getting worse, fear of death, and extreme weight loss i took matters into my own hands and contacted both the dr office and project access and told them how severe my illness was.  The next day I was scheduled for the upper endoscopy.  Nothing was found except GERD.  They tried to leave me at that, saying i got a diagnoses and were going to give me a prescription to prilosec, when i cried "no way!".  I finally convinced the woman on the phone from the dr office to actually discuss my case with the dr and see what he says about my symptoms.  I then received a call to set up an appointment for another test.  A gastric emptying test.  It is where you eat something laced with radioactive dye, and they take pictures of how fast it is digested through your stomach.  That resulted in my diagnoses.  The problem is that i was diagnosed weeks ago, and have yet to see the doctor.  Why?  The dr is scheduled all the way out to mid-september.  I'm guessing it's more because they are doing everything for free, and gastroparesis treatment is constant, and expensive.  Meanwhile, the advice is to eat "small, frequent meals".  HA!