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

  • I Have Questions says...

    Hi Kirby,
    I have no gallbladder.
    I was diagnosed with Functional Dyspepsia in October.
    I still feel bad right before my period, Im 44.
    I NEVER have constipation EVER.
    Is constipation a main symptom of Gastroparesis?

  • Kirby says...

    Constipation is a symptom but not required for a diagnosis of GP. Some people have the opposite problem while others have no bowel issues with GP. Everyone is different and GP has a wide range of symptoms. I think my constipation is more related to my CIP than it is to GP. I believe that hormones play a part in GP, but that is just my belief. I do not think it is any coincidence that most of those with GP are female; at least the ones that seek out an explanation or diagnosis.

  • Karen Simons says...

    Hi Kirby!
    It’s been awhile since I checked out your website. I can’t believe how completely awesome it is. I’m so glad you are doing this….education all the way, baby! I’ve got a great goal for both us. Okay, here it is…..I want us both to stay out of the hospital so we can finally meet. I think we’ve been communicating for at least a year or two. Anyway, I love you so much and I treasure your friendship. Many hugs and blessings to you, my friend!

  • Stacy says...

    Stress is a killer for Gastroparesis!

  • Sad w/Gastroparesis says...

    I recently just was released from the hospital, as of yesterday. I was diagnosed with this god forsaken stomach disorder. I immediately have been searching the web for information on gastroparesis. I hurt in my stomach, have no energy, have lost weight, etc. I am unsure of my meal plans etc. can you please share with me any help to my issue???

  • Rev Charles Gaskins says...

    I came down with this horrific disease nearly a year ago. It took Dr. 6 months to diagnosis it and four more months just to see the VA gastro clinic. In the meantime I was vomiting, stomach filling too much then vomiting again tremendous pain but then again I am telling the choir aren’t I?

    THey did those tests on me same results and told me to eat a liquid diet. Then they stuck a tray infront of me of pot roast and all kinds of food solid at that. I couldn’t taste it nor keep it down one bite I nearly lost my stomach contents but that night I did.

    They kept me full of fluids, potassium and magnesium for several days then send me home and say learn to live with it till we can decide what to do with you. It was Dec. 4th when the first diagnosis was made.

    A year ago I weighed 327 pounds a diabetic since ’87 and now weigh 218 pounds and look hideous. I will provide a pic if shown where.

    I am sick every day now vomiting even on just water and gren tea so am in real trouble since it is a month away before I see them again. Your story of the feeding tube scares me terribly I don’t really want to live but if not for my loving supportive wife I would just die.

  • Kirby says...

    You must not be afraid of a feeding tube. If our stomachs and intestines fail us, we need to help them out with a feeding tube. They are rather convenient too when you have to take medicine or juices/teas that taste awful, but benefit a healthy body. Just put it down your tube and you’re done! Dehydrated? Pedialyte through the tube. Done! I miss my tube, to be quite honest. I now have a power portacath where a nurse accesses it with a needle and I am fed TPN through a vein in my chest that stops just short of my heart. Very risky having it because infections can cause death in a very short amount of time, as you might have read about in one of my blog entries.

    But really, tubes are scary at first and feel very unnatural but when you see the benefit and start gaining weight and having energy again, you will be glad to have it around. I know this to be true. Also know that there are many many many other people out there going through the same thing you are and are facing the same decisions. We are here to support one another as we travel this journey together.

    Let me know how everything progresses. Happy tummy day!

  • Kirby says...

    There is the GP diet that usually consists of no fruits and veggies. Low fat and fiber and anything else that digests slowly in the gut. We don’t need anything to further slowdown our already slow intestines. I believe there is a link on the sidebar to a very well followed/recognized GP Diet guide. It could be a place to get started. Our list of safe foods, unfortunately is not very long, but it does exist for those who are at the beginning stages of the disease. Let me know if there is anything else I can help you with! Good luck. We are fighting right there with you 🙂

  • Freda Sullivan says...

    Thank you Kirby! I am 48 and have had stomach pain for most of my life. When it became unbearable I went through numerous surgeries and nothing helped. Finally I received the gastric emptying test. Found out I have severe gastroparesis. I want to get the stimulator. I have to have something done to feel better. I am so glad I found you on here. Thank you Kirby!

  • Julia says...

    I’m so grateful that I came across your blog! Thank you for all of the information that you post! I’m sorry to hear all that you’ve been through (((hugs))). I’ve been struggling with GP (and other autoimmune disorders) for 2 1/2 years. I’m no longer to keep anything down, I’m severely underweight and heading back to the Mayo Clinic in 2 weeks for a 4-day Whole Gut Transit Study, after which, they will decide what type of feeding I will need (J-PEG, NG, etc).