Over the past 4 ½ years I have kept a huge part of my life a
secret. I didn’t want people to
know because I didn’t want to be seen as weak or to be looked at with pity. I even had a hard time keeping my
family in the loop about my health, but I’ve learned recently that sharing my
story might save someone from the pain I’ve endured. It might even give somebody the hope through their struggles
as others sharing their stories have helped give me hope. I apologize for this post being so long, but it has been such a bumpy road and every piece has been important in getting me to where I am today. Later, I will write about the spiritual journey through these past 4 1/2 years.
The winter before getting sick.
GALL BLADDER
REMOVAL
I finished my student teaching in December of 2012 and began
applying for teaching positions. I
accepted a position in Salt Lake and began the move to the “big city”. It was my first year of teaching and I
was being placed in a tough situation, with students that hadn’t had a
consistent teacher all year. I was
working about 14 hour days on average, while trying to enjoy a social
life. I was that girl that thought
I could do it all and nothing bad could happen.
The first week of April was Spring Break. I spent my break with my family in
California. Immediately after
returning to Salt Lake I got what I thought was the stomach flu. I missed 3 days of work, but I still
wasn’t getting any better. My
roommate, being a nurse, decided it was time for some fluids so we spent the
night in the ER. The doctor told
me that if I didn’t begin feeling better the next day to return so we went
home. That evening I noticed blood
in my stool and so my roommate and I returned to the ER.
I was admitted to LDS Hospital and they began running tests. For 3 days they ran tests and as they
did I began getting more intense stomach pains. My mom flew in the third night and began pressuring the
doctors to look at my gall bladder.
The ultrasound tech was convinced that it was my gall bladder, but the
doctor wanted to do the HIDA scan.
I was in so much pain from the HIDA scan that they stopped half way
through and rushed me off to surgery.
I felt such relief after my gallbladder was removed that
they had me eat. Instantly I was
in pain again, but I wouldn’t let them know it. I just wanted to go home so I pretended to be okay and they
discharged me the next afternoon.
My mom helped get me comfortable and then she flew home. Once she was home I texted her to let
her know that I assumed I had celiac spru (allergy to gluten) like my older
sister and brother. I first
decided to go off of dairy for 2 weeks but had no relief. I went off of gluten for two weeks and
felt much better, so I decided to live a gluten free lifestyle.
GLUTEN, DAIRY,
MEAT, RAW VEGETABLE FREE LIFESTYLE
After about a month of being gluten free I still wasn’t
feeling amazing so I cut out dairy as well and began feeling much better. For about 10 months I was able to
function quite well. At least once
a week I would have an intense stomach attack, which would involve throwing up
(sometimes blood) and what can only be described as someone stabbing my upper
stomach with twisting and turning.
The only thing I could do during an attack was curl up in a ball with a
heating pad, watch Disney movies, and wait for it to pass. They’d last anywhere from 4-18 hours
and then I’d sleep for a day and get back to my life. Most of my weekends for 10 months were spent in bed, but I
was grateful that I could still teach.
The next March after returning from Spring Break (I don’t
know what it is about Spring Break, but it gets me every time) I went into a
stomach attack that wouldn’t end.
It went on for a month before I finally decided to go to the ER. I was vomiting constantly and blood every few days. The doctors
didn’t know what to do at each ER visit so every doctor that I saw just kept
prescribing me more meds. It had
now been 2 months and the pain wasn’t subsiding at all so I called my older
sister. (She had been through
something similar and had survived so I wanted advice on how to do so).
She told me to stop all meds and go off of gluten and dairy
(which I was already doing), as well as meat and raw vegetables. She said that our body has a hard time
digesting and that those foods are difficult to digest. I took her advice and slowly I began
feeling better. I would still have
at least one terrible stomach attack a week, but having some relief was a
blessing to me.
NEW MEDS
I started a new medication prescribed by my endocrinologist
the first week of school. My stomach pains began coming back worse, but this
time they were higher up in my stomach.
The doctor told me that it couldn’t be the med. and to keep taking it so
I did. A month later I began
struggling with keeping my food down.
At first, I would throw up once every few days, but by October I was
throwing up every time that I ate.
Uncontrollable Nausea
I stopped eating breakfast so that I could at least teach
through the morning without having to run out of the classroom to throw up, but
I was always nauseous. People
starting teasing me about being pregnant, but believe me I knew that I couldn’t
possibly be pregnant. By November
I was living off of 5 Pediasure’s a day because I could keep the liquid
down. By December I could no
longer keep Pediasure down. I began
going to the ER 2-3 times a month to get fluids. The doctor there would always run tests, but to no avail.
I called my endocrinologist again and he said that it might
be a good idea to stop the med. for a while and so I did. My mother was furious at this point
that I had lost 5 pounds in a month and that my gastro. wasn’t doing anything
about it. She flew out and had him
do a colonoscopy, another endoscopy, a stomach MRI (with and without contrast)
as well as any other test he could think of. Nothing was conclusive and so he offered to prescribe me
pain meds, but that was all he could do.
HEARING LOSS
Mid-January I realized that I could no longer hear in my
left ear. I thought this to be
really weird, but didn’t think much of it. I also noticed that my vision was becoming blurrier, but I
just assumed it was because I wasn’t sleeping. My endocrinologist put me back on the med. saying that I
needed to be on it for 4-6 months to see results.
My good friends mom started me on herbal treatments. The big ones were peppermint oil for
nausea, other oils to help me sleep, and pure electrolytes. I would use them every day and although
I am not much for alternative medicine, I do know that these helped hold me
together for a month or two.
By February I began
collapsing and blacking out a couple times a week and was missing work about once a week. My friend introduced me to the song by Rachel Platten titled
“Fight Song”. I listened to this
song at least 20 times a day to remind me to keep fighting.
VERTIGO
On March 12th I walked into my apartment after
work and instantly collapsed on the floor throwing up. The room was spinning, my eyes were
spinning, and if I moved an inch I would throw up. My "second" parents came gave me meds, and did maneuvers to help me through the vertigo until I fell asleep.
The next morning I felt fine so I drove to work but as I
began teaching the vertigo came over me again. I remember being curled in a ball and using one arm to point
to the board while my students read what I pointed to for almost an hour. I realized that it was not going away
and so my vice-principal came and took me to the Walkers. That weekend I went into vertigo every
day, but the next Monday I felt so much better. I even tried to eat
lunch that day and seemed to be okay.
Tuesday, I was still feeling pretty good.
The day was about half way over and I was with my students
in the computer lab. I felt
nauseous and so I ran to the bathroom.
On my way back I began feeling the vertigo come on again. I got back to my computer where I
collapsed on the floor. I had a
student bring me a trashcan and then tried to keep the other students
working. After about 10 minutes I
had them line up and told the line leader to walk them to my coworkers
classroom so that she could take them to where they needed to be.
COLLAPSING AT WORK
The next thing I knew there were about 5 teachers, both
administrators, and the secretary in the lab. They called an ambulance and I was rushed to the ER. The ER doctor gave me pain meds as well
as meds for vertigo and that was when my blood pressure plummeted. I was admitted after failing to stand
and walk on my own and spent the night there. The doctors wouldn’t listen to me as I tried to explain my
stomach pain. They were only
concerned about the vertigo and dizziness. I begged and pleaded with the doctors to test anything that could
possibly explain my stomach pain but they wouldn’t.
THE DIAGNOSIS (GastropAresis)
The next morning Sister Walker showed up saying that she
knew what was wrong with me. (She
had webmd’ me). She told me that the big factor was that
when I was throwing up in vertigo, none of my food was digested and it had been
a day since I had eaten. She
urged the doctor to test me for gastroparesis and he finally agreed. He sent me home with her saying that
her husband needed to get me IV fluids for the next few days and the test was
scheduled for the next Monday. I
was no longer able to walk on my own or do much of anything and so my mom flew in. She could
hardly recognize me. I’d lost over 30 pounds since I’d seen her
2 ½ months before.
To test for gastroparesis they do a gastric emptying
study. I had to eat a bowl of eggs
with radium and keep them down for 4 hours. Every hour they would do a scan to see how far the radium
had passed through my digestive tract.
After 4 hours about 80% of the radium had yet to even enter my stomach
and so I was diagnosed with gastroperesis.
Finally having a name for what I was going through brought
instant relief. Now I would be
able to get the help that I needed to get back to a normal life. It was also a relief that the doctors
no longer thought that this was all in my head. That week I started Reglan, met with a new G.I., and made
long term sub plans. My mom and I
then made the 24 hour drive home to Indiana where I would meet with more
doctors about the vertigo, migraines, and black outs.
I slowly began trying food again and could keep little bits
down. I was terrified to eat at
first because of the pain that would follow, but slowly the pain came less and
less.
VERTIGO FROM
HEADSTANDS IN HIGH SCHOOL
I met with an ear, nose, and throat doctor about the vertigo
and he sent me to get an emergency brain MRI. He said that the vertigo was neurological and then sent me
to a neurologist. The neurologist
said that I didn’t have a tumor and that I should go to the Mayo Clinic as soon
as possible. By May I was waking
up in vertigo and once again was not able to keep my food down. I couldn’t even walk to the bathroom on
my own and so the Neurologist started me on topirimate. The problem with this drug is that it stops
the vertigo, but it causes appetite loss.
My mom had to monitor the food in the house closely to make sure that I
was eating and often had to force me to eat.
The meds were helping the vertigo and so I begged my parents
to let me go back to Utah to finish the school year and say good-bye to my
class. I would just work half days
and the substitute would be with me at all times incase something
happened. They agreed and flew me
back to stay with the Walker’s again.
It had been over 2 months since I’d seen my students so
seeing them was a breath of fresh air.
We cried, laughed, hugged, smiled, and did everything we could to enjoy
our last 2 weeks together. It was
hard for them to understand why I couldn’t really walk or why I only stayed for
part of the day, but they were so strong and brave.
One night Sister Walker was rubbing my neck (I had neck
damage from headstands in high school) and she pushed a spot on my neck and I
felt instant relief. The fog over
my eyes cleared, the migraine went away, and I wasn’t dizzy. This
is when we realized that my neck was the problem. She got me into her friend who was a head and neck physical
therapist. He worked his magic and
I began to feel so much better.
Soon I was walking on my own again, they took me off of the topirimate
and so my appetite came back, eventually I was able to drive, and we canceled
out appointment with Mayo. The
last two days of school I even got to stay for the whole day.
DOMPERIDONE (THE
MIRACLE MED)
I had about a week of relief when the throwing up began
again. This time I couldn’t keep
liquids or solids down but I was taking Reglan. My G.I. suggested a J feeding tube and then I met with the
surgeon. He suggested the same but
would not place the tube until after my family reunion. (He said there was no way I could get a
tube placed and then go on a plane the following week). On
our way home from the appointment we were in a car accident. Miraculously neither of us were injured
other than whiplash, but my mom needed me to come home and be with her. I flew out the next morning and met
with my Indiana G.I. He started me on domperidone (which is not FDA approved) and I
instantly saw results.
Within two weeks I was back to eating normally (well still
gluten and dairy free). For 6 months I felt great. I could eat normal, the vertigo was
mostly gone, and I had energy to run and exercise. The only thing I was really struggling
with was the fact that I couldn’t control how rapidly I was gaining weight now. They say that this happens with
gastroperesis but knowing that didn’t make it any easier for me to be gaining
weight, but it was something I would just have to deal with.
TPN
In November I began preparations to run a half marathon on
April 16th. I was running
about 4 times a week and just loving that I could use my body again. Over Christmas break I got the stomach
flu. Now for a normal person
getting the stomach flu is just apart of life, but for someone with
gastroperesis it can set your progress way back. I never recovered from the flu. I knew immediately what was happening and so I went back to
a liquid diet. Beginning of
February I met with my nutritionist and we decided that I needed to start
TPN. This meant getting a mid-line
placed in my upper arm and receiving my nutrition through IV’s. I
was 24 and had home health coming once a week to my apartment. Every night I would do one bag of fluids
and every other night I would do a bag with vitamins and nutrients. I did this for about 1 ½ months. They thought that my stomach would jump-start
again during this time, but it didn’t so it was time for a more permanent
solution.
J FEEDING TUBE
March 31st
I went in for surgery to get a j feeding tube placed. They place a tube into your small
intestine for feedings to bypass the stomach. The surgery and recovery went really well. I was up and doing stuff within a day
and within a week I felt more energy than I’d felt in years. 2 weeks after surgery I began running
again. I was not able to run the
half marathon in April, but I decided I would run one as my birthday present to
myself. For 1 ½ months I felt so
great. I noticed that from getting
my nutrition through a tube my hair thickened and grew, I had more energy, and
I just felt good.
Mid-May I got nauseous while my students were taking a test
and ended up throwing up bile. I
didn’t think much of it until it started happening every day. Soon I was throwing up bile 4-6 times a
day. My doctors said that it was
okay because I wasn’t losing my nutrition but I knew something else was
wrong. My upper abdomen was
constantly bloated and the stabbing pain began happening again. In June my G.I. did another endoscopy
and decided that I needed a second tube placed in my stomach to decompress
it. This is called a peg tube or g
tube.
PEG G TUBE
I had the procedure scheduled with the radiologist for June 21st. This procedure involves them putting a
nasal tube through your nose into your stomach to fill it with air. (You have
to be awake to help choke the tube through your esophagus). Then they do an ultrasound to see where
your stomach is touching the abdomen wall as well as where the liver is. They use lidocaine to numb the site and
then a local sedative to place the tube. In my case they used 7 lidocaine shots as well as multiple sedatives, but I felt every cut and pull. They had to hold me down as they placed the tube but the pain didn’t go away when the procedure was finished. The doctors spent 2 hours after the surgery trying to knock me out,
talking to my mom over the phone and my little sister (who was with me).
I was admitted and placed on a PCA pain pump. I was on multiple pain meds but it took
them almost 2 days to get the pain to a point where I could rest. I had never felt pain so severe that I
screamed before. During my stay I
remember thinking that I didn’t know if I’d survive or if I wanted to
survive. They only did 2 CT’s and
2 blood tests during my 3 day stay at the hospital. During my time there we found out that the pain meds worked
better when placed through my j feeding tube and so I was prescribed liquid
pain meds and sent home. Pretty
much the doctors told me that they didn’t know what else to do for me, and that
I would just have to live on the pain meds. My mom and I were devastated, I felt like it was hopeless.
HOPE THROUGH
OTHERS
Thankfully my mom was not willing to give up on this health
battle. We finally opened up about
my gastroperesis to my brother’s next-door neighbor. She knew a friend of a friend who had a daughter with
similar health issues. She gave us
the mother’s number and my mom called her. They spoke for almost two hours about their daughters’
health journeys and about this amazing internist that had helped her
daughter. She gave my mom diseases
to have me tested for and this doctors phone number.
Two days later we sat in his office as he looked over every
test and procedure that had been done on me over the past 4 ½ years. He came up with about 12 more blood
tests to run, a special ultrasound and CT, an MRI of the brain through the
spine, and a table tilt test. I’ve
begun these tests and will be finishing them over the next couple of
months. We are praying that he
truly is the answer to all of your prayers and fasting for me. We hope to have answers soon that will
explain why I have gastroparesis and from there will be able to take the steps
necessary to get me back to a healthy place. We even have hope that someday I may be able to eat food
again without it coming back up or out of my g tube.
I got sick so slowly that most of my friends and coworkers didn't realize how sick I was. I didn't even realize how bad I was until it was too late. I don't want others to get as bad as I did before I received help. Right now I am working on building my strength back so that I can walk through the airport or the zoo without using a wheel chair. I'm learning to function through the pain and pain meds. But mostly I'm hoping and praying that God will guide my doctors to finding answers for my family and I.
If you know of anyone who
is struggling with similar issues and has had success or who need suggestions
on doctors or diseases to get tested for please have them message me on here or
on Facebook. I’ve learned that we
have to stick together and help each other through our health journeys. I’m grateful for all who have been
willing to share their story and hope that we can help each other to not only
survive this disease, but learn to actually enjoy life through this.
