Life is short and we have never too much time for gladdening the hearts of those who are travelling the dark journey with us. Oh be swift to love, make haste to be kind.
- Henri Frederic Amiel
Within this website you will find my experiences and research in symptoms, tests, diagnosis, treatment, procedures and the general ups and downs of gastroparesis, CIP and many other motility disorders. Please do remember that this is a chronic illness and, while it has been known to go into remission, it might be something that you will battle for a lifetime. It is important to get all the information you can so you may have the best possible outcome or prognosis. You cannot put all your faith and trust in one doctor. Doing so may cost you your life. *videos of awareness can be found in the middle of my page as well as at the bottom (the whole story) which is different from the one posted in my blog section*
WARNING: This is not in anyway medical advice. Always consult your physician when it comes to your own treatment.
A little bit on my background and how I came to create this webpage. When I was first diagnosed, I went through the internet to find all the information I could on my diagnosis. Much like you are doing right now. I didn’t just want facts. All websites were the same with limited information. Not only was the information limited but it didn’t give the full picture. Since I couldn’t find what I wanted, I made my own. While I did appreciate the effort and work other reputable organizations offered, it just wasn’t enough. Within this website I attempt to provide the facts and information other websites offer, but I also provide detailed reports as I go from diagnosis to treatments to procedures. When I was first diagnosed, I wanted to know how it was going to feel, how it was going to look and how it might change my life. I wasn’t able to find that before and I know how frustrating it can be. Here you will find those personal details. It is my hope that you may find help here, when there may be no other place to go.
I am a 29 year old married woman from Washington state. I was officially diagnosed with gastroparesis in the beginning of 2009. It wasn’t until I found the right doctor who was able to perform the correct tests. I went through at least 5 ignorant and rude gastrointestinal doctors who would tell me there was nothing they could do to help me; some told me there wasn’t anything wrong with me; and some went so far as to tell me it was all in my head or that I had an eating disorder. I don’t think I’m alone in my frustrations.
After years of suffering from worsening symptoms, a gastric nuclear imaging study showed significant delay in stomach emptying time. They do not know how I developed gastroparesis so the type of gastroparesis I have is referred to as idiopathic. It is believed by my gastroenterologist, however, that I possibly contracted a virus which destroyed the nerve controlling the muscle contractions of the stomach.
My main symptoms included nausea 24/7, unusual fullness soon after eating, distention of the abdomen and pain. I lost weight over the course of 5 months, bottoming out at 96 pounds at a height of 5’6″. My gastroenterologist then put in a nasojejunal feeding tube which was in place for 6 excruciating months. I responded well to tube feeding despite 6 tube replacement procedures due to kinks and blockages. It was decided that I might benefit from a gastric neurostimulator for my increasing nausea and it was the hope of my doctors that with time, it would also help my stomach emptying time. I was implanted with a gastric neurostimulator (stomach pacemaker) on the 25th of February, 2010. After a little over two months with the new pacemaker, I was placed with a permanent jejunal feeding tube to help maintain nutrition while my stomach continues to heal. That was placed in April, 2010.
A low-profile feeding tube (button) was placed in June of 2010 but due to complications, I had to be rushed into an emergency surgery and left the hospital with a surgically placed feeding tube. Not pleased with the result, I went back in to have a new jejunal tube placed by interventional radiology, and at the same time, got measured for another low-profile feeding tube. Just a week later in July, I received my button. Unfortunately, I had major complications with pain and the inability to use my new feeding tube. I was admitted to the hospital many times over the course of 6 months. I had to be placed on TPN via a PICC line and later a port-a-cath, due to the development of CIP. This is where I currently am in treatment.
I recently had another GES study done to compare the results with one done back in 2009. With the stimulator on, it was the hope of my GI that the stimulator would have had some affect on my stomach and that it would show in the test. This was not the case. Instead, the exact opposite happened. My stomach has degenerated at a speed that surprised even my gastroenterologist. He is looking to be more aggressive in treating my gastroparesis in the hope that my stomach will someday start working again. For now, my only source of nutrition is TPN, hydration and a little ice cream at the end of the day. I’m maintaining a stable weight and hydration with TPN and a liter of fluids each day.
I’ve had many different complications over the years including almost fatal sepsis along with septic shock, no motility in my large intestine, and problems stabilizing my blood pressure leading to frequent fainting episodes. Despite many setbacks, I am still alive and still fighting. As long as I have life, I will fight. My work here, is not done. I’ve had many brushes with death but I’m still here. It is important to try and not let medical problems control your life. Some will tell you it shouldn’t affect who you are but I disagree. Who you are is defined by where you’ve been and where you are going. Experiences and trials you have overcome have only made you stronger. Keep living, keep fighting and enjoy the life that has been given to you. Fudōshin!