Sunday, August 21, 2011

Never Giving up the Fight, My Journey with GP - Awareness Week Blog by Kat Price

I will never forget the first time I heard the word Gastroparesis. It was
in March 2008, when I was told I had Idiopathic Gastroparesis. My journey
with GP started in January 2008. I went from being a healthy, active and
energetic person to someone who was constantly nauseous, tired and felt full
after only a few bites of food. I was barely eating, yet my stomach was so
distended that I started to look pregnant. I needed to know what was
happening to me, and more importantly, why?

I was referred to a dedicated Gastroenterologist who was determined to help
me find those answers. Immediately, testing began and I spent most of
January and February in cold examination rooms waiting to being poked,
prodded, x-rayed and scanned. The answer we were seeking came at the end of
February 2008 with the results of my 4-hour Gastric Emptying Study. During
this time my stomach had emptied only 7% of the radioactive egg and toast
meal. The test was repeated and confirmation came in. I had Idiopathic
Gastroparesis! now what is that exactly and...WHAT DO I DO ABOUT IT?

I thought, now that we knew what we were dealing with, my next steps would
be easy: just manage it with medicine and diet. But I tried every medication
from Reglan to Domperidone with no success. Unfortunately, one of the
problems dealing with GP is that it is a unique disorder that affects each
person differently. Some medications work for some people, but for others
they don’t. Some can eat while others cannot. Some people vomits and others
don’t. Some lose weight while others gain.

Then, in April 2008, I suffered a severe gallbladder attack and had to have
laparoscopic surgery immediately to remove it. Things were rapidly going
downhill. My Gastroparesis was getting worse and when my doctor realized
he could nothing else for me he referred me to a teaching hospital where
they could give me further attention. One month blurred into the next. I
was still sick. I no longer ate regular food. I lived on 10-12 boxes of
Altoids a day. I was often dehydrated. I no longer had bowel movements.
My skin paled. The whites of my eyes turned yellow. There was nothing left
to do but take care of the problem by taking care of the problem, which was
my stomach. This meant a Total Gastrectomy.

So, on the morning of August 15th 2008, I was quiet, but apprehensive as I
awaited my 4-hour open stomach surgery. But I remember the ice-cold
operating room. I remember the hygienic look of stainless steel. I
remember the mask over my nose. Breathe in. Breathe out. Breathe…and then
I remembered nothing.

Where apprehension had mounted before, now there was only a deep blackness
and blessed peacefulness. Though I awoke with a long vertical scar across
my body, and no stomach, I awoke with something new…I awoke with Hope and
the opportunity to return to a normal life.

Fifteen days later, I return home to begin the slow process of learning how
live without a stomach. Some days were pretty easy while others extremely
hard as I learned which foods I could, or could not, tolerate. But I
remained optimistic that my life would gradually gain a sense of normalcy.
And for a while it did.

Then, May 2009, my “normal” life ended. In my case, all of my
pre-gastrectomy symptoms returned and I ended up in the hospital for 12
days, being diagnosed with Colon Inertia,(which basically means my colon
does not work as it should), and Pelvic Floor Dysfunction. Though I am on a
liquid diet, I’m often dehydrated and rarely do I have a bowel movement. A
colostomy, which could be a solution, is no guarantee that my problem would
be solved, and once my colon is removed, there would be no turning back. I
am very fortunate to have a great support group of understanding family and
friends. Currently, I am awaiting a FDA approved experimental colon study.
My faith has not wavered and I believe I will one day be able return to my
former active life.

1 comment:

  1. my husband is a diabetic gastro paresis patient.... my heart goes out to you and others with this horrible disease... he was hospitalized for the first time with non stop puking on january 12, 2004. after much poking and proding, they determined that he had gallstones, so they removed his gallbladder. after the surgery, the puking continued. then they did the 4 hour stomach emptying test and diagnosed him with GP. just PERSEVERE sweetie and never ever give up hope for a cure and relief! and just know that you are not alone in your suffering! love & hugs