Gastroparesis is a life changing disease that affects 5 million Americans without a cure and very limited treatment options. It quite literally means that your stomach is paralyzed and does not digest food properly, if at all. This can lead to a whole host of issues that make it difficult to function in day to day life. Those of us with Gastroparesis are subject to random flairs which include any combination of the following: severe stomach cramping, nausea, vomiting, the inability to eat for days which results in the need to have IV nutrition, and the dreaded “brain fog”.
GPers (as we affectionately call ourselves) must be constantly aware of the food that we consume and are quite limited in our diet. Imagine how many social activities revolve around food and now imagine the stress that goes along with not being able to consume the food at these functions. How do you explain it? Will people understand? Should you bring your own food? Will the restaurant say something if you bring in your own food? These are all questions that go through our minds. By educating our friends and family we are able to reduce our stress level with the above questions, but they never fully disappear.
The “GP Brain Fog” is as frustrating as any of the other aspects of Gastroparesis. There is not a way to fully describe this. The best example is that your brain has completely deserted you for a period of time. While you are battling the brain fog you are only semi-aware that it is happening. You feel like you are stuck in park and cannot move. Once you are out of the fog, you realize that you have lost days of your life and hope that you haven’t made any important decisions!
Needless to say, all of the above leads to difficulties professionally and personally that are sometimes sad, frustrating, comical, and rewarding. My battle with Gastroparesis started when I was a child but only recently became life altering. I am attempting to continue my career, running, snowboarding, yoga, camping, traveling, socializing with friends & family, and much more in spite of GP. Many others are fighting the same fight and I hope that by sharing the highs and lows of my adventures that I may help someone else with GP to find the courage to keep fighting and to help people develop a better understanding of the day to day life of a GPer.
However, I must acknowledge all of my GP brothers and sisters that are fighting the fight solely through feeding tubes and IV nutrition. Their Gastroparesis is so advanced that they are not able to consume any solid foods. I fight this fight and share these stories for them!
For more information on Gastroparesis please visit IFFGD (International Foundation for Gastrointestinal Disrorders) http://www.aboutgastroparesis.org
** Please note that I am not a medical professional. A medical professional should be consulted before trying anything that I am attempting! **
8 year vet of GP…..graduated from PICC lines, Central lines, tubes..and 3 years ago meet a doc that took out 80% of my stomach out and making a tunnel sleeve so good gets pulled downward promising that the 24 hour nausea and vomiting would be at least HALF better…I now suffer from worse symptoms, chew up more Zofran than before surgery…and now the GP is causing the opening pancreatic duct to paralyze causing stenting every 8 weeks, I also self aspirate weekly which always turns into bronchitis…still I wake up, do my hair, make up, and pray for help….a little bitter knowing that should they have taken out the whole stomach like cancer patients if be tons better…sooo along with Pancreatic stenting every 8 weeks, my Pulleys paralyzes itself closed needing another EVERY 8 week EGD with Botox to keep that open so food goes down the sleeve …which more over learned the surgeon could’ve been more aggressive and taken whole stomach, made a great funnel sleeve, permanently opened Pyloric…..my life might have been a little better….2 surgeries every 8 weeks is exhausting….praying for a cure….
Stacie, I am so sorry to hear of your struggles. We need to find a cure and treatment options for Gastroparesis.
My hope is that this blog can help raise awareness and educate non-GPers on what our lives are like.
Thank you for your post & I hope that you will keep following the adventures!
Thank you for sharing your story. My daughter was diagnosed with post-infectious GP last fall. Her doctor believes it will heal itself in time, but in the meantime we’re just waiting and praying. I never even knew such a thing existed before her diagnosis and I still can’t believe what a nightmare it is. My thoughts are with you and with all that suffer…thank you again for raising awareness. It’s hard enough to be sick without enduring the endless “helpful” comments from people who don’t understand.
Shel, so sorry to hear about your daughter. I hate for anyone to have to go through this & it is continual motivation to raise awareness to the point that the general public knows about this!
Hi Millie! My name is Kathe. I’m not a GPer, but my husband is. He was recently diagnosed at Thanksgiving (how ironic). My job is to make sure he eats what he needs to be eating, and that he gets enough rest. This is all so new to me. I am still feeling my way through what he can tolerate and what he can’t. It’s crazy! Luckily I work at the hospital, so I have access to his doctors and the dietitions. He spends so much time sleeping. His flare-ups are so severe. I totally get it when you say that people should be grateful they can eat. Our lives have completely changed because of this disease. Ron had a stroke last Easter Monday, which knocked out the part of the brain that controls his blood pressure, so he tends to crash frequently, plus it affected his swallowing. His doctor is pretty sure it affected the vagal nerve as well. You couldn’t get any luckier. I will be following your blog with interest. Good luck to you with your GP. I will keep you in my prayers, as I do all of the other GPers out there who are suffering from this dibilitating disease.
So sorry to hear about your husband. Gastroparesis is definitely tough to deal with. Hopefully he kind find some relief soon.
Thank you for your support & prayers!
Fell out of bed feeling down. This has breentghid my day!
I just found your blog when I googled gastroparesis and acupuncture and I am so glad I did. I am a gp’er, recently diagnosed in January. I am no stranger to GI issues (I’ve had ulcerative colitis for the past 9 years). I’m one of the lucky ones and have never needed to make any dietary changes for my colitis. This gastroparesis, however, is really throwing me for a loop. I have not been able to find my “balance” and I am having one hell of a time letting go of food and all that it represents. I’ve lost about 20 pounds in a year’s time and am now underweight. I’m petite to begin with so anymore weight loss is a real problem for me. I’ve started working with a dietician and am looking into other alternative therapies like acupuncture and chiropractic. My GI has prescribed domperidone (I’m intolerant to reglan), but I haven’t filled the rx yet. I sooo do not want to be on any more medications (I’m on enough for my colitis and other health issues). I will be following your blog closely for tips and more importantly, for support. Many thanks for putting it all out there! -C
I’m so glad that I was able to help!
I am also on Domperidone and I would recommend filling the prescription. It has helped me tremendously. Acupuncture has also been a life saver. (I’ll actually be writing about this more today.)
Gluten-Free is helping as well and I know others with Gastroparesis that are having success going gluten-free so I would recommend giving it a shot. Worst case, you do not feel different and add gluten back in.
I will be anxious to hear what works for you as you experiment with different options!
Thanks for what you’re doing on GP awareness. I’ve had it for almost a year now (was diagnosed just months after finding I also have Graves Disease). Often my friends don’t understand how suddenly my whole life has had to come to a halt, so it’s refreshing to read about others who get it. I, too, am lucky enough to work and support myself as well as try new things. I can eat but have to be on a very restricted diet, with daily Zofran and Protonix. Thanks for being a beacon to all of us!
Thank you for the kind words!
Staying positive is hard, but something we must try to do. Hopefully this blog will help you find encouragement and your friends to find understanding.
I finally got the courage to look up blogs on this disease. I was diagnosed 3 years ago with it and wish I had found my fellow spoonies sooner. I felt so alone these past few years, but then stumbled upon an instagramer who had the same disorder who completly opened my eyes to the support that is out there! And thank God! If it wasn’t for blogs like these this fight would’ve ended pre-maturally sometime soon (not to be dark, just to be honest) because I was dreading the words “feeding” and “tube” coming up at my gastro. They popped up at the end of last month and I, at 5 months pregnant, am going for a tube Nov. 7th. I really wish I had found this blog sooner. This entire time the doctors had me thinking it was so rare, so why bother finding a support group that didn’t exhist… boy was I wrong! Looking forward to watching your blog and surviving and thriving!!!
Oh my goodness! Sorry to hear that you are going through all of this while pregnant. I can’t imagine!
We have all gone through periods of wondering if GP is something that we can handle.
Keep in mind that you are not alone! One of the reasons that I created this blog was to show others that they are not alone and to provide insight into our day to day lives!
Keep your chin up, because you are stronger than you will ever know!
Hi! I have just come across your blog doing research on GP. My GI doc thinks I have it due to all my symptoms and a recent upper endoscopy showing food in my stomach after fasting. This week I was diagnosed with an autoimmune disease and gastroparesis is a symptom of it for many. There are a lot of scary things on the Internet about GP so I am confused. Is this something that will eventually lead to starvation for everyone with it? Are there different “levels” so to speak? Does it inevitably get worse over time? Talking to my GI doc, he says it is manageable for most people. But what does that mean? Can you live somewhat comfortably with this for 50 or 60 years?? I am sorry for all this questions but I need answers from someone who has gone through it. When you aren’t having flare ups, do you feel and eat totally normal? What is the difference between experiencing a flare up and feeling your new “normal”? I lost 14 lbs in just a few weeks, could barely eat, was nauseaus and exhausted. Strangely enough, Pepcid AC helped me sleep and take away the nausea and pain. But I can’t eat like normal and am constantly bloated. Thank you so much in advance for answering my questions. If email is better, please let me know because I could really use a friend in all this.
Hello! I was just recently diagnosed as well. I too looked on the internet for some answers. God is so good and led me to a wonderful site of a woman who has had it for 9 years and is living well with it. Her site is truly an answer to prayer! A lot of my questions were answered. She has a very positive outlook on all of it. Check it out at http://www.livingwithgastroperisis.com. I hope it blesses you as it did me!!
http://livingwithgastroparesis.com Sorry, this one should work!
Thank you Daphne!
I have not personally met or interacted much with Crystal, but I do love her take on life. Both of us refuse to give in to Gastroparesis and are determined to remain positive and spread positivity.
Thanks again for checking out my blog!
Thanks for checking out my blog! So sorry to hear that you are struggling so badly. 😦
Yes, there are a lot of scary things about Gastroparesis on the internet but you will find that there are also several people who are doing their best to not focus on the negative. They (including me) are doing everything they can to continue to fight for a quality of life. Just remember, that like with anything in life, some people take a positive approach and some dwell on the negative. Yes, there are those with Gastroparesis who are in very bad shape but there are also several who are thriving. It is important to look at the whole picture.
Yes, from my experiences in talking to other GPers, there are different levels of symptoms and quality of life. I am in no way a medical professional and do not claim to provide medical advice. Rather, I share my experiences and what I go through with Gastroparesis. I was frustrated that I didn’t see much about daily life that included both the good and the bad so I started this blog.
Currently, I am living relatively comfortably with Gastroparesis. I work full time and go to the gym almost every day. I have worked EXTREMELY hard at rehauling my diet and identifying those foods which cause symptoms and pain for me. Avoiding those foods have kept me feeling mostly normal when I do not have flair ups. For me (and it is different for everyone) eliminated certain foods and receiving acupuncture was the key. Although severe weather shifts will cause a flair up for me. I know of several others who have issues during weather shifts.
Cutting out gluten helped me tremendously with bloating, although others have had different results. Again, I am not a medical professional but eating natural foods seems to help.
Please do not apologize for all of the questions! It is important to educate yourself and the only way to do that is through questions.
Feel free to e-mail me directly at any time: email@example.com (Sometimes it might take me a couple of days to respond but I make sure to respond to every e-mail I receive.)
Thanks again for checking out the blog and keep your chin up! Stay positive and don’t ever stop fighting!
I was diagnosed with gasteroparesis when I was in my freshman year of high school, after about three years of vomiting, losing weight rapidly, and becoming very VERY thin. I mean scary thin. Doctors tested and tried everything, but none of it seemed to help. I was so weak, constantly dehydrated and hungry, yet at the same time, not hungry. The smell of food would make me want to puke, because I knew if I ate it I would anyway. I lost 60lbs in almost a month because I could just NOT eat.
Fast forward 11 years later, and I’m still struggling with it. My GP makes it very hard for me to lose weight, and I’m developing more allergies and intolerances than I know what to do with. I am always nauseous, and that “brain fog” you mentioned? My god, it’s a relief to know I’m not the only one. I always called it my “disconnect.” It was as if I had a fog between my brain and my eyes, so I would see things but not understand, and have really hard times remembering anything that day.
I’m struggling with my diet, because I know what will keep me from pain, and I know I won’t want to vomit while doing it. However, sometimes I’m left with such crippling stomach pain I don’t know what to do with myself. It’s a very tricky situation.
My main fear? Is this genetic. CAN I pass this to any future children? Will it make being pregnant tricky? I’m getting married next Fall and I can’t seem to get this fear from my mind. I don’t want to watch my babies go through the same crap that I did. It was easily the worst time in my life… I thought I was going to die.
Thank you so much for this blog; it’s amazing to realize that I’m not the only one out there! It gets really annoying to have to explain my condition to every damn person that offers me a sandwich, or wants me to go out to lunch. I’d love to have a support network.
Ahhh, thank you for existing and creating this blog! I’ve just been diagnosed with Gastroparesis, 3 months ago, although I’ve had the symptoms noticeably for 9 years now (Since I was 9 years old, I’m 18 now). It’s so relieving to find other people that understand the pain I’m in, and it’s even better to find people that are not letting it take over their lives, I’ve almost let it take over so many times now. Definitely going to be reading everything you post ever now hehe. Thank you for your support, you don’t even understand how much I needed something like this.
Thank you so much for your kind words Ashleigh!
There are many GPers out there and the key is to not give up. Keep trying different things and you will eventually find what works for you to alleviate some symptoms. It won’t always be smooth sailing but it IS possible to get to the point where you have more good days than bad.
This is both helpful and frightening to find. My son has GP and has had it for almost 2 years. He is 16 and 1/2 so he has missed some important life experiences living in his room for the most part. He is unable to attend school regularly but definitely never in the morning which is when he seems the worst. The section where you wrote about deciding whether you could wash your hair, Millie, really rang a bell for me as he will tell me if I ask him to do that: I just can’t do that today Mom. He says that with a look in his eyes that just kills me, a resigned sad look. So, I will read through your blog to see what he can borrow from your experiences that may help him too. Thank you for writing all this! And I hope you continue to do well 🙂
I hope that your son has found some relief and I am glad that you are able to use this blog to help understand what he is going through.
However, I can tell you that there is hope. I have been feeling MUCH better the majority of the time the past couple of years so it is possible. It takes A LOT of trial and error to find what works for your son but don’t give up and keep trying things!