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 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!

  • 60 Responses

  • Kirby says...

    I used to live in Arizona, too. I’m glad to hear that the domperidone is working for you. It did not work for me, though I was on it for months. I hope it continues to work for you. You’ll be in my thoughts.

  • Rachel Kramer says...

    Hi Kirby, and everyone.
    My name is Rachel, I am 23 living in Toronto Canada. I have had type 1 diabetes since I was 4, and was diagnosed with gp 5 months ago after on going extreme nausea, and pain.
    It’s so nice to hear other young individuals going through, and surviving. It’s so hard, but I’m pushing through.
    I find drinking low carb protein powder all throughout the morning, like every two hours until 5pm helps.
    Strangely enough I can get a small supper of white bread at night and chicken at night.
    Kirby your site is fantastic, I am so happy I found it!!
    Keep going you seem like a wonderful person and I wish you all the best!!
    Rachel

  • Janelle says...

    Hi Kirby,
    I was diagnosed in June of this year trying to manage with diet and Zofran for the nausea but not doing very well. My moms accupucturist wants to try to stimulate my vagus nerve with accupuncture and I was curious if you know of anybody has ever tried it?

    Thanks for all of the great information,

    Jan

  • Rachel says...

    Hi Janelle,
    I tried acupuncture for 6 weeks. It helped a little, mostly just to calm my nerves, but nothing spectacular. I’d say its worth a shot but don’t expect perfection.
    What works for me is drinking protein drinks when I feel nauseous opposed to eating solid food. I really like the Vega, its a powder you mix into soy/ almond milk or water.
    I find it helps because it travels right through my stomach.
    If you want to check it out here is the site http://myvega.com/ it is sold at most health stores.
    Hope you feel better!!
    Rachel

  • Lisa says...

    I am trying to find more information for treatment of gasterparesis and what will exclude a patient from being a candidate for the gastric pacemaker or a gastrectomy. My father is a 61 year old brittle diabetic who has been fighting gasterparesis for years. He was looking into the neurostimulator but the pain was so severe he couldn’t even complete the gatric emptying test and was taken to the hospital over a month ago, and has severly declined in health. They placed a G/J tube, which has slipped twice, placed him on TPN, which introduced a systemic fungal infection and instead of gaining weight, he is now down to 112 pounds at 5’9″. I haven’t been able to determine if everythign they have done wrong is now going to exclude him from receiving any treatment for the gasteroparesis. So far that hospital has given him MRSA and Candidiasis, and now he is about 40 pounds underweight. Even if I get him well enough to move to a better hospital, they are likely to reject him for the MRSA alone (one has already) and with the addition of the fungal infection, I fear no one will treat him. The pain he feels is intolerable, and I don’t know where to turn or who to ask for help. Unless I pay $1000 and obtain all his medical records, I can’t get an official opinion from any doctor or hospital, and even then they will want their own tests and it will take weeks. I don’t have weeks. If he is going to fight, I need answers now on his chances for receiving treatment. Even if the procedure has a 90% chance of killing him and a 10% chance of resolving the pain, he’s willing to take that chance. I just don’t know if any doctor is willing.

  • Jennifer Sheives says...

    Kirby,
    I have been visiting your site on and off for a while now.
    Questions~ what is CIP exactly?
    I am diagnosed with GP and had my tube (PEG-J) in August. We (hubby and I) are thinking that I need it back or the transmitter. 🙁
    Everytime I eat, I have pain from the smallest amount.
    Just so frustrated and tired of it all.
    But happy to know that I am not alone.
    I feel weak but it is the illness, not me.
    Happy to hear that stress effects others as well.
    Everytime my husband leaves town for work, the stress knocks me down badly. I can have a great week, but almost as soon as he leaves, I am severely nauseous and in bed almost the whole time. 🙁
    Thank you so much for this site. It helps me and encourages me to keep going.
    (and the Botox stunk for me too. Did nothing to help. Just made me hurt.) 🙁
    Praying for all on this site. Hope you find some relief soon. One day of good helps you push on.

  • Claire says...

    Hello Kirby, I am so glad to have this website . It is 3:30 in the morning and I am miserable from severe stomach pain. I began noticing symptoms of gastroparesis in March of this year, after a severe case of pneumonia . Didn’t really pay ,uch attention to early satiety or bloating, or even weight loss. I have a mitochondrial myopathy and just figured it would take a long time to recover. It always does. .by August the pain began . It is now severe, couldn’t even begin to think about a gastric emptying test. My weight loss and sate of malnutrition have become dangerous. I am being ad otter for placement of a port cath and TPN. This is quite daunting . I appreciate your sharing your own experiences. I am praying for stablization of electrolytes, adequate nutrition and please dear Lord help with the awful pain. Did the porta ath Hirt a lot afterwards? O will have a lot of blood draws through it the first days . I a, not a candidate for lain meds due to poor metabolic function. Any support would be so appreciated . I don’t usually use the word fear but I am there .
    Alain, the lack of seep , inability to eat has worn me down. If this TPN works, I actually look forward to not eating . Thanks for your help and comments .

  • Abraham Gale says...

    I struggled with diabetic gastroparesis for many years. The medication Domeperidone makes me free of gastroparesis. Unfortunately, Domeperidone is not allowed to be marketed in the United States by the FDA. I researched why and found that the reason is only personalities conflict between the FDA and the medication manufacturer. Domeperidone is an excellent, old and cheap medication which is prescribed and sold in any other country in the world, and in many countries without prescription. The only side effect for Domeperidon is increased milk production in breastfeeding mothers. (Domeperidone is prescribed to breastfeeding mothers with not enough milk production). No side effects to men or others (You wouldn’t produce milk.. rsrs)In the US, because Domeperidone is not sold, Gastroentrologists prescribe other medication with high prevalence of nerve damage side effects, that cause permanent unwanted face and mouth movements. The FDA refusal to approve Domeperidone because of personality conflicts with the manufacturer is a crime. Domeperidone is sold in Canada and Mexico. I live in San Diego. Indian manufactured Domeperidone is sold without prescription in pharmacies in Tijuana under the name Motidom/Domeperidona in a box of 30 10 mg tablets and I found it to be very effective. The pharmacists and internet search recommends 1 to 2 tablets 3 or 4 times a day. The price per box in the center (Avenida Revolucion) is around $20 per box (probably because pharmacists know there that the medication is not sold in the US) and around $5 for the same box (the only way Domeperidone is distributed in Mexico) in pharmacies which are near the downtown, like “Las Mas Barratas” (a taxi driver will take you there from the border or from Revolucion for $5 one way). To enter back to the US, you need a passport or a birth certificate. I find Tijuana today to be not less safer than San Diego, and after several weeks on Domeperidone I can enjoy delicious and inexpensive Mexican restaurant food.

  • Daniela says...

    Hello,

    I am a 45 year old women diagnosed with GP in 2011 after 4 years of stomach issues. Playing cancer not cancer game all this time. I read your story and it seems like I read my story. I had total gastrectomy done last year in July, ugly infection weeks in ICU not knowing if I’ll make it. I did . I have J tube that doesn’t do much for me. Thank you for your blog. Please write me in my personal e-mail .You are a God sent gift to me. I would like to talk to you.

    Happy tummy!!

  • Katerina says...

    I came across your blog when I started looking for info to help my mum who has recently been diagnosed with gastroparesis. Thank you so much for your initiative. I’ve been struggling to find information. I hope you are doing better!