In this website, you will find my personal experiences with treatments for gastroparesis, information on gastroparesis, where to find help for gastroparesis, my doctors that have helped me in my journey with gastroparesis and a blog where I write about the daily challenges and victories of living with gastroparesis.
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
I am a 27 year old living with the symptoms of a disease called gastroparesis. After years of suffering from worsening symptoms, I was finally diagnosed in the summer of 2009, after 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 portacath, 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 and a little ice cream at the end of the day. I’m maintaining a healthy weight with TPN and am slowly gaining back my energy.
24 Responses
Moony says...
Natie ftw imo
Seminario says...
This is some trustworthy material. It took me a while to unearth this web page but it was worth the time. I noticed this post was hidden in yahoo and not the number one spot. This web publication has a ton of helpful stuff and it doesnt deserve to be burried in the searches like that. By the way Im going to add this site to my list of favorites.
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&context=C3ed4776ADOEgsToPDskLRLSoY7W9odSt-e3kibYpu
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!