Welcome

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.

About Me

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 33 year-old woman from Washington state but now resides in MN. 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!

  • 60 Responses

  • Kirby says...

    I’m glad you were able to find this site helpful and comforting. It isn’t always easy putting your story out there for the entire world to read but you guys and your comments make it all worth it. You are in my thoughts as you go through treatments to try to get your symptoms under control. I hope that the stimulator is enough to do that but if not, your doctors have enough knowledge and skill to offer other treatments that will finally make and keep you comfortable and put your symptoms to rest.

    – Kirby

  • Kim says...

    Hello. I was diagnosed with GP over 10 years ago. After numerous tests, diets, meds, gallbladder removal, etc I had a Heineke Mikulitz pyloroplasty done. I was great for 10 years with no issues outside of frequent and sometimes emergency trips to the bathroom (which I was told was normal from gallbladder surgery and just a fact of life). My GP came back with a vengeance a year ago and I have tried 2rounds of Botox and balloon dilation, more meds, diet and no relief. I am having a Finney pyloroplasty done next wk. anyone else have pyloroplasty surgeries before??? Tessa, which one did you have done?

  • Jordan says...

    Hi Kirby. I just wanted to say that I got diagnosed with gastroparesis in November and I was frantically searching the internet to find someone that knew what I was going through. I am so happy I found this page. You are so strong and inspire me everyday! I currently just got my NJ tube out and have been diagnosed with many other things but I will continue to pray for you. Stay Strong.

  • Kirby says...

    Glad to hear you were able to ditch the NJ tube. I had to have mine for 6 months before they agreed a J tube in the abdomen would be more beneficial. I could have told them that from day 1! The things we deal with! I’m also glad to hear that you are able to find help through this site and hope that it will continue to be a resource for you as you travel this journey. Know you are not alone. There are many of us that are just like you and we are more than willing to help out, even if all we can offer is a listening ear.

  • Jordan says...

    Oh I know how that goes! I had my NJ tube in for about 7 months… I was so happy when I finally got it out but I have to admit, it was a lifesaver. This site really has helped me so much. And I know many people are going through this journey also. I just hope we find a cure soon!

  • Cory says...

    First off your site is awesome! My name is Cory I am 22 years old and from Springfield, Mo. I got back from the Marine Corps infantry school in June 2009 in great shape eating and drinking whatever and whenever. I began getting violently sick in the beginning of August 2009 by the time December rolled around I had dropped 25lbs I could barely do my drills and I couldnt go to class because I was so sick. I got kicked out of school and my girlfriend left me because of how negative I was becoming. I had also been vomiting so much I partially ripped my esophagus from my stomach which now put blood in my vomit. One night in late December I had thrown up so much in the previous week I could barely walk. My roomate wasnt home so I drove myself to the hospital where I was immediately started on fluids and blood. By the time they were done I had taken 4 bags of fluid and a quart of blood. In January 2010 The doctor thought I should have my gallbladder removed to fix the problem. It did nothing, I continued to get violenty sick and get told by the people around me it was in my head, that there was no reason why I couldnt work or go to school. I ended up getting discharged from the Marine Corps because I was unable to train for so long, It frustrated me so much because no matter what I did I still got sick. I had so many tests I couldnt even count how many I had. I was 45lbs down so I finally was refered to a specialist where he did a stomach empyting study in Feb 2012 where my stomach functioned at 8% and diagnosed me with Idiopathic Gastroparesis. I have tried to take the medicine he gave me (Reglan, made me want to kill myself) and adjust my diet but i still get sick. The best days are where I just dont eat but then people look at my like Im crazy. I feel like I have tried almost every option, I’ve made an appointment to recieve electronic therapy but they are unsure if that is going to help. So we will see how that goes, but good luck with your situation I will pray for you!

  • Cory says...

    Holy cow I just watched your video and was so impacted! I did not watch it before I posted but all I can say is your a fighter! good luck I will definitly keep you in my prayers!

  • Kirby says...

    It is such a fight to figure out all of what is wrong. But don’t give up. We have all been there. It takes times for the doctors to go through the correct channels and practices to make the correct diagnosis and when they do – you will receive the proper treatment. I’m afraid that for the time being, you might be subjected to a nasal tube for nutrition to see if your weight improves. If it does, a more permanent solution will be found and you will feel so much better with the right nutrition. Just make sure you have a solid team behind you, a gastroenterologist, a nutritionist, primary care physician and maybe even a surgeon. They must all communicate with one another to discuss your case and be on the same page so that they may come up with treatment that will help you in the positive direction. I have no doubt you will get better. This is how we all start out. Sometimes it is slow but sometimes it hits us like a truck. You want to take care of it as quickly as possible because the malnutrition starts to affect other systems like your liver, your bones, your intestines and even your brain. So many things rely on the delicate balance of proper nutrition and the only ones who have any knowledge to make the right decisions regarding that are those specialists I listed earlier. You are at the beginning of what might be a long road, but if you can get a hold of it sooner, rather than later, the road can be shortened and regardless of treatment, you can still live a happy and healthy life. Look to the Patient’s Page on my site for inspirations.

    If you need to vent or need advice, we are all here for you. You are not alone in this fight.

  • Cory says...

    Its just so nice to know I’m not alone, thank you so much Kirby!

  • rebecca says...

    Hi I also have Gastroparesis and was diagnosed in 2009. It was a real struggle these past few years. I live in Arizona but I went to see a specialist in Georgia. he increase my Dompiredone which seems to be helping.