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

  • Moony says...

    Natie ftw imo

  • Karyn Petre says...

    Hey how are you doing? I just wanted to stop by and say that it’s been a pleasure reading your blog. I have bookmarked your website so that I can come back & read more in the future as well.

  • erin says...

    Hi there,

    I stumbled upon your blog looking for images of stoma. I’m a nursing student and have encountered a lot of drawings, but not many pictures of the real thing.

    Your story is amazing and your courage is inspiring. Thank you so much for sharing yourself with the internet! I hope that learning about your journey will make me a better person and a better nurse.

    Take care,

    Erin

  • Ari says...

    Oh, you are a WOW player as well? He he! I have gastroparesis and was looking for info about how to cope… watched your video there and saw the toy griffon from the griffon pet.
    But anyway, nerdiness aside… I am so glad I found your page. My symptoms have been getting worse and it is such a terrible loneliness… i havent had the gastric emptying test yet but get my ultrasound results on monday. For the past week I have been existing on about 200cal a day because i cant keep anything down and the thought of food just makes me feel worse. I am gagging down some soup now. People around me just dont understand.

  • Kirby says...

    Yes >.< Haha, I did play WoW. I was Natie a priest on Kilrogg. I had to stop raiding hardcore with my guild after 2 years =( because my health was such that I couldn't devote the solid 5 hours or so of raiding. I was needing to take breaks too often. Still love all those guys, I had fun. I have been meaning to jump in the game sometime soon. I understand how you feel. There are many of us out there though. You are NEVER alone! I need to make a new page under Patient Stories to include videos that my friends from G-Pact have made, but for now I'll link you one :) You can find the others under the group: Gutsy Teen Lounge. Keep me updated on your tests! Hope you are feeling well =) You’re Never Alone GP Video

  • Ari says...

    OMG! lol I will so stalk you ingame if you ever come back :p I am still raiding, struggling through it. Perhaps ashamed to say I have quite a few high level characters. We are Khazgoroth though. My guild leader has RA and fibro lol so she knows what its like to have chronic illness.
    I dont know if my GP is a result of abdominal surgery to remove a tumour, systemic lupus, my hypothyroidism or something else. Thank you for the link! My ultrasound showed nothing abnormal and my doctor wants to refer me to a gastro specialist but wont do the gastric emptying test for some reason. Im already sick of doctors.

  • Allen says...

    Kirby -

    Your story and situation means so much to me. I’m 27 years old, and was diagnosed in January 2011. This disease is awful, I’ve lost 70lbs since May! Next Wednesday, Nov. 16, I’m gonna have 4 botox injections into the very bottom of the paralyzed muscle. I’m excited, the medication and diet help very little. I just wanted to ask you if there is any advice you have. And I wanted to let you know I’m gonna be thinking about you, and your in my prayers!!

  • Kirby says...

    Hey Allen~

    I’m sorry that you have to go through all of what gastroparesis causes but at least you still have some options to help control it. I see you have botox scheduled for next week. I hear that the injections work for a lot of people. I am, unfortunately, not among those it has helped. I was a bit sore from irritation from the injection, so if you feel a different kind of pain in the area, know that is probably all it is and it does go away after a day or so. Keep me updated on how it goes for you. I pray it works and you are able to manage your symptoms through those injections.

    ~ Kirby

  • Ann says...

    Hi Kirby: Just found your site, was reshearching Domperidone and came across you. I’m a 54 year old female. For two years I have been suffering with horrible stomach problems. Finally was sent to Philadelphia, Thomas Jefferson Hospital, and fond that I have eeophageal inssues. Hadthe botox infection and got very ill from them. Spent 4 days in hospital. Was on reglan and just went off it after 10 days, could not sleep. Going to start domperidone soon. Thanks for your website. Prayers and thoughts for you and everyone else that suffers with gastroparesis. Ann

  • Jax says...

    Wow, I’m so glad I’ve found this site. Basically I was diagnosed after years of problems/surgeries, and all I’ve been given is Erythromycin, plenty sick bowls and basically told to get on with it. My GP has informed me a feeding tube may be the next place to go due to weight loss and intolerance to any food, and I’m no longer tolerating oral pain meds either, so that has to be sorted too. I look forward to going through your website. Many thanks:o)

    Jax. oxox

  • Kirby says...

    Yeah – a tube would probably be good if weight is of concern. I have an issue with oral medications as well. It comes to question how long they will take to absorb, how much will absorb, or will it absorb at all? I no longer have a tube due to an intolerance to the tube due to my tiny abdomen. There just aren’t many spots available especially with the stimulator and leads floating around. I suggest you order all your meds in liquid form. Anything I can get in liquid or IV, I do. With a tube you can flush your liquid medication straight through, ensuring that it will absorb at a much higher rate. Even pills (as long as they aren’t extended release – XR) can be crushed and dissolved in water and flushed through your tube. Just be careful in doing that as to not clog up your tube. If you do end up placing a tube, let me know. I can help get you set up with some things that will make it a little easier and more comfortable.

  • Melissa says...

    Hi Kirby,

    I am almost 28years old (on wednesday). I too suffer from GP and have for about 8 years now. I received my pacemaker in 2006 and have found it to be helpful. I have had 12 picc lines, j-tubes, ports, hickmans, and years and years of TPN. I am happy to report I haven’t had a PICC line since the birth of my daughter in 2009! It has been wonderful. When she was two weeks old I pulled it out on my bathroom floor. I suffer from constant nausea, vomitting, and pain but it seems to be managable. I too see Dr. Patterson and find him to be an excellant doctor, which is VERY hard to come by. I was on soooo much pain medication and started my quest to get off all pain medication so we could have a family. It was an extremely difficult process that took over a year, but I am happy to say I just celebrated 3 years pain med free! Feels like a great accomplishment and now I find other ways to get past the pain. Somedays are extremely difficult, but like you I have a wonderful supportive husband that keeps me going :) Would love to connect more!

  • Kathy Moore says...

    I am a GP patient and cant work because i cant make it thur a day without bad nausea matter of fact i was let go of my job because of either missing to much work due to sickness or just feeling like crap.Do you know anybody that has gotten disablity because of GP im working on it any tips if you know anything.I of course of other issues Diabetes,back problems, migrains,anxity you name it and i think i have most things.I live in Ohio and was thinking about contacting your Drs. if I cant get anything out of mine in Cincinnati,Ohio

  • Mom says...

    Haven’t looked at your site for awhile. Great responses. especially like Melissa’s. She has started a family and is free from pain meds. That is what I hope for you. It would be tough, but a part of the pathway to having a family.

    MOM

  • Margaret says...

    I had the gastric emptying test which diagnosed me with GP. Did any of you start off with no naseau and vomiting and progress to where it is now? Just wondering what my future holds.

  • Kirby says...

    Margaret~

    Yes, I did start off with a lot of mild symptoms. That kept me from going in to the doctor and have things checked out. By the time I managed to get in to see a doctor, I was already in an advanced stage of GP and CIP. It doesn’t always have to be that way. I have heard of people whose symptoms spontaneously disappear or get back to a level that is completely manageable. GP is different in every individual and is hard to say exactly what the future will be like in any one patient. Do what you can now, to help yourself and see if by getting it early, you can stop anything from possibly progressing.

  • Kirby says...

    I know MANY people who have received disability because of their GP. I, however, have not needed to apply for that just yet. If you want to friend me on Facebook, I can get you in contact with those that have successfully received disability. You are also very welcome to contact my doctors to see how they would go about it as well. Good luck and I hope you are having a good week.

  • Jillian says...

    Hi all, i am a 21 year old, division 2 softball athlete. I have been a fit person my entire life, and very active since middleschool. Having abdominal pain for about four years now, in August the doctors stated I had an unfunctioning gallbladder, which was then surgically taken out. Since then, I have found no relief from the pain. I continued to return to doctors to get some answers, which resulted in GP with the gastric emptying procedure. It has been a couple weeks now that I have been on Erythromycin as well as on a very strict diet. Still, no signs of any relief. I have lost 25 pounds which brings me to 100 pounds. I have never felt so weak and physically exhausted before. I have no desire to participate in the sport of love, and I almost feel guilty in the way that i feel as everyone asks me everyday how i am feeling and I almost sound like a broken record. I guess I don’t know where this leaves me, I am highly confused as well as emotionally depressed about this whole situation. Can this be a process to try and find something for relief? should I be taking something else? I have never felt the way I feel now, and I just don’t know what to do.

    All this being said, I appreciate your story and blog. It is nice to know that there are other people who live with GP, and are willing to share it with others. It’s inspirational and supporting essentially.

  • Kirby says...

    Jillian~

    I totally understand where you are coming from. I was active as well and went rock climbing whenever I could. I also loved to run and take my dogs to the park. This disease zaps so much energy out of you and when you look back at where you once were, you feel almost guilty. Like you should be able to push through the pain until it just goes away. Unfortunately, this is not the case. I read your post and have much to say but it is getting late and I am still recovering from my latest surgery. I will write more on the topics you brought up in your comment. You are in my thoughts and prayers.

  • Mari Paz says...

    My name is Mari Paz and I am a nursing teacher in Spain.
    I loved your video, it is a wonderful a way to learn about gastroparesis and to motivate patients and students to live the treatments and the illness as normal as possible.

    If you don´t mind I would like to share your video in my chanel of you tube, where I share different videos with my students. If you are not happy with that I will delete it inmediately.

    Thanks for your website, photos and videos, they´re wonderful. I think you have been very brave.

  • Kirby says...

    Mari Paz~

    Thank you for your kind words. You are more than welcome to post any of my videos to your channel. It is a wonderful way to spread awareness, as this is all I am attempting to do, myself.

    Please see my new updated video here: http://www.youtube.com/watch?v=wBHpWsszv6g

  • Brianna says...

    ok im an 11 year old right now its 4:15 am. It hasnt gotton better for me yet. I am in all childrens on the room computer. I know how it feels, i have dropped 20 pounds in the last 5 weeks. i am now 89 pounds… im 11. my normal weight is 100. My mom and dad are so worried but i wanted to say hang in there, it can only get better. Thanks for reading

  • Kirby says...

    Thanks for sharing, Brianna. I hope you get better soon and can get out of that hospital!

  • Laura says...

    Hello i cant believe i found your website and there is someone i can talk to about this ( i have felt for ages im the only person going throught this ) i am a 32 year old who 4 years ago did a milkshake diet that has messed my body up i have been told its stomach emptying delay and i am due to have botox injections very soon but im kinda worried as everyone with this seems to be loosing weight but im not since having it i have put on 3 stone (despite being sick everytime i eat ) its took my local hospital 4 years to find out whats wrong …. any advise as im really scared about having the botox

  • Maddy says...

    Hi Kirby,

    I have suffered from abdominal pain and many other symptoms, including nausea, vomiting and stomach swelling for about 14 years now. In many ways my story is similar to yours.I live in Australia and have recently found your site and been reading with great interest.

    My doctors have been unable to find a cause for my symptoms although their best guess is either chronic pancreatitis or some sort of pain syndrome. My pain is clearly associated with having eaten, after which my nausea also worsens. I have never been tested for gastroparesis.

    Anyway, cutting a long story short, I am in hospital at the moment (4th time in 18 months)and booked to have a DPEJ (Direct Percutaneous Endoscopic Jejunostomy) tomorrow. This is with a view to later having a mic-key low profile tube placed later. Your story does not say if you now have your mic-key back. I would love to know this and if there is any measures I can take myself to help prevent complications such as the ones you suffered.

    Kind Regards

  • Kirby says...

    I do not have my tubes back. Once my intestine slowed down (CIP), I became unable to feed through a tube without a lot of pain. It wasn’t just CIP that caused the pain but where the tube was placed. It was placed during that emergency open surgery I had, and that surgeon didn’t quite know where to put it. She put it up under my ribs and because of the poor placement I have developed scar tissue and chronic pain in the area. I don’t know if you can exactly prevent this from happening. If your doctor knows what he’s doing, he should place the tube in the right spot for you, and having it done via endoscopy leaves very little recovery time for you. It is by far, the most absolute best route for placing a tube. Many have an open surgery to place it and I find that it is in those individuals that have the worst problems with pain and feeding.

    I am now fed 100% via TPN in a port. It isn’t good to be on TPN at a young age because if TPN were to fail at any time, there isn’t anything to fall back on. TPN is the end of the line, the last option or resort. Try to stay on j-tube feeding as long as you can. I was successfully on it for a year, despite not gaining any weight, without any pain or discomfort. I had a few infections but nothing serious enough to keep me in the hospital or even be seen by a doctor. My doctor would simply call in an antibiotic. I wish I could use a j-tube. During my most recent hospital stay, they attempted to try feeding through an NJ tube but I was unable to get up to the rate he set for me without feeling horribly uncomfortable and in pain. If a j-tube is in my future, it is in the very very distant future. He tried to switch me to the NJ feeds last hospital stay because of an infection I got in my port. A blog entry I have been putting off due to low energy. The infection was bad and life-threatening. Spent time in the ICU with doctors who didn’t know if I’d make it. But here I am! Always fighting.

    You should also ask to be tested for gastroparesis. Helps to know and can direct treatment.

    Happy Tummy Days.

  • Kirby says...

    Oh yes, there are many who have gastroparesis (stomach emptying delay). You can find them on Facebook and through another site called G-Pact. I provide links to places like that and other patients even throughout my website.

    Botox is no big deal. It is like having an endoscopy. You’ll probably be sedated for it. I experienced a fair bit of pain after it was first done. My doctor said it was from swelling around the injection sites due to irritation. It didn’t last long nor was it so bad that I had to alter my daily life. No worries about the botox. I hope it helps. I wish mine would have…

  • Tessa says...

    After a year of dealing with gastroparesis I finally can eat. About a week ago I had a pyloroplasty it went great. I normally have no pain tolerance with this if I take pain med every four hours I’m great. On day 4 they started me on liquids then slowly solids. It’s now been 9 days and I can eat even thinking about the food that was impossible two weeks ago. The only frustrations is the 4 inch incision from my ribs to my belly button it makes it hard to sit up or touch my knee. It was a great thing the surgeon said it would improve quality of life for me it already has.

  • Samantha says...

    Hi!
    My husband was just recently diagnosed with GP. His GI is talking about the electrical thing… I forget what its called… Gastro Electrical Stimulation? and I notice that a lot of people get tubes too. Is that something that typically happens? Russ just turned 28. I’m just trying to find some information. Thanks so much! =)

  • Kirby says...

    It is called a gastric neurostimulator. It helps lower or eliminate nausea associated with GP. It has, in some cases, also improved motility of the stomach as well as pain relief but it was not marketed for that (e.g., don’t expect those results minus the nausea relief). I had my stimulator placed when I was 25. I also, at the time, had a NJ tube because my weight was so low and didn’t improve with the stimulator so I was given a permanent tube called a jejunostomy. You can read about it in my experiences. There you can also find all the different types of tubes used as well as other forms of treatment I have been through (including medication). If he is able to maintain a stable weight, he should not need the tube. And in my case, I developed further paralysis in my intestines, so the tube became useless. I am now on the last option, TPN (IV nutrition through a portacath surgically placed under the skin in my chest), to maintain weight and it has worked for me so far. The only problem with TPN is the infection risk. I blogged about my latest brush with death, an infection of bacteria (yeast – one of the worst bacteria you can fight as it is resistant to many medications and colonizes quickly) in my port which quickly (within a few hours) invaded my blood. I hope your husband is able to stay away from tubes (of any kind – including TPN) as long as possible and hope he can recover from GP with the stimulator if that is what your doctor plans on doing. I also hope he has a great GI as GP is not very well known or understood as a diagnosis. My site, here, has quite a bit of information and experiences (experiences of other patients as well) to hopefully allow you to make treatment decisions. Let me know if you have any further questions :)

    Happy Tummy Day!

  • 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).

  • 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.

  • 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!