Saturday, August 27, 2011

my story

I decided to start a blog so I can update people, raise awareness, and just get out my story when I'm having a rough day.  I have had many people messaging me to ask what has been going on in the past month making me end up in the hospital and on so much medication so this is an easy way to answer everyone :). Right now I'm just living in the present moment and taking each day at a time. I don't know what tomorrow will bring or when I will start feeling better, but just have to try and be positive and get through it. Here is my story...
NG tube

Before surgery

 I have lived my whole life with a nauseous stomach and constant vomiting.  When I was three my parents said I would grab my stomach and cry.  No pediatric gastroenterologist or pediatrician could figure out what was wrong. They all just attributed my stomach problems to stress and eventually abdominal migraines.  And that I just happened to get the "stomach flu" more than anyone else.  I thought feeling really full after eating a small amount was normal. The older I got I started having horrible side pains on top of the nausea. My mom and I went to the pediatrician when I was 19 and after having tests to rule out appendicitis, told me to try some yoga. I was appalled...was I really that stressed to cause this many health problems? I had vomited every week of my life almost... on road trips, my first communion, from eating too much (or rich of foods), in stores, and on field trips.  I threw up during a final my freshman year of college and was back to finish it right after. I spent my life in emergency rooms and urgent cares for iv fluids and nausea medicine.
Finally, I had enough and needed an answer or at least give it another try.  I found a gastroenterology clinic in Lone Tree and just happened to get Dr. Patt as my GI.  I remember my mom telling me to not get my hopes up when we had my appointment during winter break of my sophomore year of college. But Dr. Patt surprised us and has been such an amazing doctor and even inspiration since then. I got a blood test for celiac disease (gluten intolerance)...negative. I had a gastric emptying study (GES) which came back abnormal. For the GES I had to eat oatmeal with radioactive substance and take pictures of my stomach every so often.  Dr. Patt also did an endoscopy (boy was I nervous!) and saw my pyloric sphincter (muscle between my stomach and small intestine) was so small and tight. Pushing the endoscope through made it bleed...he had never seen such a case. Of course I had to be a rarity! My diagnosis was adult pyloric stenosis and gastroparesis.  Pyloric stenosis is almost always only seen in infants and requires emergency surgery because the pyloric sphincter is completely closed leaving the food in the stomach resulting in vomiting. My pyloric sphincter was big enough just to let a tiny bit of food through but not nearly enough. Gastroparesis literally means paralyzed stomach and the stomach does not move correctly to get food through. This is why I was always so full and vomiting so frequently. 
I tried reglan (a stomach motility medication) which made me worse because my stomach was trying to empty against an almost closed opening.  Dr. Patt injected botox in the summer of 2008 in my pyloric sphincter with the endoscope to relax the pyloric sphincter muscle. Wow it made such a difference!! I was able to eat and live normally for a few months. But of course I started getting worse again. Botox was injected once again in January of 2009, but no such luck that time around. The last option was surgery to widen the pyloric sphincter. I went to a general surgeon who had never heard of pyloric stenosis in adults. I later learned there is only one other reported case of primary adult pyloric stenosis so no wonder no doctor had heard of it! I had pyloromyotomy surgery which is what they do in infants. The surgeon cut some of the layers of my muscle. He made his incision in my abdomen and was shocked at what he saw.  My pyloric sphincter had grown so much scar tissue and was extremely inflamed from food trying to push through my whole life. My liver and gallbladder had attached itself to the pyloric sphincter with scar tissue....scary I was living like that! This inflammation was causing me side pain and low-grade fevers.  He described cutting the layers as trying to cut a wad of rubber bands. He also had to cut off the liver and gallbladder.  My stomach got punctured in the process and I woke up in the hospital with an NG tube (to vent my stomach) and on a liquid diet.  I had many complications with the surgery...ileus (intestines stop working after abdominal surgery) and a gross infection.  It would all be worth it though in the end I kept telling myself. I would be cured I though...little did I know...


 "If something bad happens to you, be grateful it didn't happen to someone else less likely to overcome it, we will never be given anything we can't handle."