My fight with Gastroparesis, Chronic Intestinal Pseudo-Obstruction, microcytic anemia, dystonia, and other unknown health issues that are ongoing and getting testing such as autonomic nervous system diseases and other things they are trying to figure out is getting way worse. My health dwindling down and I desperately need to return to the Cleveland Clinic and get other health care that my insurance won't pay for.
Here is my full story: scroll to the bottom to see what has been going on here lately within the last month.
I am Cori Burke and I am 24 years old, here is my story and details
about Gastroparesis and Chronic Intestinal Pseudo-Obstruction.
I began
vomiting in my sleep beginning at the age of two, but not enough for my
parents to think, "oh something bad is wrong." As my life went on my
vomiting became worse, in sixth grade I was diagnosed with acid reflux.
Ninth grade came around and my mom took me to a pediatrician because I
just didn't feel good, I had little energy, and was not a normal 14 year
old girl. After an EGD (scope down the esophagus to the stomach) and a tube that was left in for 24 hours that measured acid, I was
told I must have severe food allergies going by the irritation in my stomach.
As high school went on my ability to eat grew smaller and smaller. I had
an episode of vomiting one night where hives from head to toe and
burning all over the body followed. We went to the ER, it happened again
10 days later and the allergy appointments began however I showed up
with ZERO food allergies. Then the preservative testing began which was
also negative. By Christmas time when I was 19 I held down very little
of my meals, on December 31 I completely lost my appetite trying to
prepare for new years I couldn't stay out of the bathroom...SO MUCH
vomiting and diarrhea, every 3 minutes until I was very dehydrated. I
went to the ER and spent new years thereĀ I had a fever for 104-105,
vomiting, and diarrhea for 4 days...then the fever dropped, the diarrhea
stop, but now I am 24 and have not held down a single bite of food.
I was most likely born with Gastroparesis however the severe virus damaged my vagus nerve and completely paralyzed my stomach, and also sent other antibodies haywire, which they are thinking messed up autonomic nervous system. Doctors appointments and no one could figure out what was wrong. I went
through multiple testing, months at a time hospital stays getting IV
nutrients, in three months I dropped 60 pounds and I did not have 60
pounds to drop. I went through horrible doctors that would yell, "hold
it down!!" Doctors who swore I had an eating disorder because I was a
teenager, but I was not causing myself to vomit. I went through
uncountable procedures and testing, 5 NG tubes, and G-tube, and a
GJ-tube, none of which worked because things still went to my stomach.
Finally I traveled to Cleveland Clinic (where I am currently needing to go) where I was told if I did have a
feeding tube bypassing my stomach straight to my intestines I wouldn't
be there the next week. I was in the the last stages of malnourishment,
appearance wise I lost my hair, my nails came off, and I was bruised
from head to toe. I was then diagnosed with gastroparesis after a failed
Gastric Emptying Study showing that I didn't digest food.I could not take the medications due to horrible side affects that caused seizure/stroke like symptoms, the medications do not control the disease but treats the symptoms. A j-tube saved my life, I was told I had a week to live when I got it put in. I had a
gastric pacemaker put in August of 2014 after finally finding a
doctor in my state, my pacemaker has not began to work yet.
After
my onset of GP and CIP I have developed microcytic anemia and receive
blood transfusions, multiple auto-immune deficiencies, a poor immune system
in general, seizures, and permanent neurological problems due to GP
medication side effects (seizure and stroke like episodes),kidney mass, chronic UTI's (I am suppose to see a urologist soon),
and twitches and trembling. I have also been in a coma. I currently have
a J-tube, a peg tube (to drain and protect my throat because I have
Barrett's esophagus, a precancerous condition of the throat), and a
gastric pacemaker.
Gastroparesis (GP) and Chronic Intestinal
Pseudo Obstruction (CIP) are paralysis of the stomach and GI tract. You
can have GP without CIP, but they go hand in hand. CIP is the muscles in
the intestinal tract not working properly causing a pseudo obstruction
in your intestinal tract, which means you have symptoms of an obstruction but there is not a physical one, but your muscles not working properly. There are few treatments for GP and CIP, it is
all trial and error. There are few medications that work or don't, but
are also very dangerous and can cause life long neurological problems. There is no cure and very little understanding.
Having a Gastric Pacemaker placed in your stomach is another treatment.
Keep in mind this is not a cure, and may not even work. If affective the
pacemaker will calm your nausea and vomiting and allow you to eat on a
very strict diet. This does not take away flares (days where vomiting
and pain is worse). GP and CIP patients experience severe pain, severe
bloating, bowel problems, malnutrition, and sometimes even death. My pacemaker has not began working yet and it can take up to a year or longer to work. Have
you ever thought about how much people rely on food? Of course. But have
you ever thought about what a social activity it is? Food at holidays, food
with friends, on trips, vacations, birthday parties, pretty much every
activity you engage. Do you know how hard it is to sit there, starving
to death, but not able to take a bite of anything? Not ever having that
feeling satisfied? People with GP and CIP can literally starve to death. People with GP as severe as mine slowly starve to death.
There
are 5,000,000 people suffering from these diseases today yet I go to
"major" hospitals and facilities and get blank stares when I tell my
disease. People are dying, I know they are dying because I have met them
in support group. People don't know they're dying because they don't
know about the disease. Just last week a 5 year old lost his battle with GP. There is so little research and awareness, so I
ask you to PLEASE join me and help raise awareness for this cause. So that
we can have a fair shot at lifel. The number
one cause of GP and CIP is idiopathic, meaning they don't know! Please
share, get the word out....when people ask "What is that?" tell them.
Let's get it acknowledged!!
For 5 weeks now my condition has worsened, I vomit at least 20 times a day, on top of that I have been having severe diarrhea for 15 plus times a day. My body is losing A LOT of stuff that I am not even putting in. I have been hospitalized 5 times in the last 5 weeks with severe dehydration, seizures, dystonia, and more. I am miserable. My doctors are even worried and I am on my 3rd trial diarrhea treatment that hasn't started working yet. I really need to get to the Cleveland Clinic and I need help. I have zero energy and walking to the bathroom is a task. I pass out from dehydration, low blood pressure, and high heart rate. I currently have a knot on my head from passing out.
Thank you for your time and please help me raise money and pray!!
Supporters
Because the Cleveland Clinic should be able to help Cori to get better.
for a very brave young woman - here is to you, Cori!
In honor of my niece Brinley- she's 7- and was born with twisted intestines. At 1 day old she had her first surgery to remove most of her intestines- she has been on a feeding tube her whole life.