Below is a guest post by Melissa Adams VanHouten who suffers from gastroparesis. But first…
What is Gastroparesis?
Gastroparesis [GP] is a serious disorder in which the stomach does not empty its contents into the small intestines. Normally, the vagus nerve stimulates the stomach muscles to churn and break up food we eat. That food then moves on to the small intestines where nutrients are absorbed. If there has been damage to the vagus nerve, the muscles of the stomach can stop working properly. Vomiting, pain, weight-loss, dehydration are just a few of the symptoms. Often the cause of GP is unknown, infection or damage because of surgery could cause it. The only known cause of GP is diabetes and GP makes diabetes difficult to control. There are medications, surgeries and lifestyle changes that may help. Like other “invisible” or “but you don’t look sick” disorders, more research is needed.
Post by Melissa Adams VanHouten
In early February 2014, I spent a week in the hospital and was eventually diagnosed with gastroparesis. [GP] Most people have probably never heard of GP; I know I hadn’t, prior to being diagnosed.
Overnight, my life changed in unimaginable ways. One day, I was able to eat at buffets, the next, unable to tolerate all foods and liquids. Hospitalized with severe pain and vomiting, doctors put me through a battery of tests, made a diagnosis, gave only a brief explanation of my illness and its treatment, and sent me home. For the next few weeks, I was on a liquids-only diet, and told to gradually work my way up to soft foods and (eventually) solids. Unfortunately, nothing like that has occurred. I am able to eat some soft foods, in tiny amounts, but it is becoming clear that I will never again be able to eat “normal” foods in “normal” amounts.
At first, I told myself that this stupid disease wouldn’t define or control me – it simply WOULD NOT be the center of my life. But as time passes, I see how foolish that was. Every single day, every second of every day, I think about food. I see it; smell it; cook it and feed it to the other members of my household; but I cannot have it myself. I look in the mirror, and see a skeleton.
Trying to eat even small amounts of food leaves me in agony. I am fatigued to levels I didn’t think possible. Some mornings, I don’t have enough energy to get out of bed. I can barely concentrate enough to do everyday tasks. And almost every single night, my husband has to help me up the stairs to bed because he is afraid of my falling down those stairs. My 11-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out. It has frightened her so much that she has asked my husband to get me “Life-Alert” for the times when she cannot be home with me.
I grieve because I can’t travel or get out of the house. Missing family events, being unable to attend my daughter’s activities saddens me. I grieve over being unable to go out to eat, or on a picnic, or to another concert. Most importantly, I worry that I won’t see my daughter graduate, get married, or have children.
It’s frustrating because people don’t understand how my life is affected by GP. If you saw me on the street, you would probably not realize I am this sick. I don’t look that sick. And because most people are unaware of the effects of GP, they ask me all of the time if I am okay now. Convincing them that I am never going to be okay again – not in the way they mean it- is impossible. People tell me “you just need to eat,” or they say, “if only you would try ‘Activia,’ you’d be okay.” My own primary care physician accused me of being an anorexic and told my husband to “watch me.” And though I know people mean well and are trying their best to help, it is still frustrating.
I am angry because I do not like being a slave to this disease. I do not like having to rely on others. I am angry because I do everything that I am supposed to do – eat the right things, exercise, and ingest the known medications – and I am still sick. There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die. He doesn’t – and I am so thankful that He ignores those moments.
It is hard to believe, but there are others with GP who are much worse off. There are thousands of posts in my Facebook feed every day from people who have had to go to the ER or back in the hospital for dehydration, pain, or other such conditions. So many people have feeding tubes or ports for nutrition. Many have developed other serious conditions because of GP and sometimes, looking at them, their experiences seem to surely be my future, too, and it scares me.
Yet I am thankful for the support I receive from the GP community. You can’t imagine the blessing online groups have been. I have learned much, for sure, but have received so much more than information. Understanding, kindness and friends that I feel I have known for a lifetime, abound. Although I hate this disease, I dearly love all the people I have met because of it.
But despite these blessings, what it really comes down to is that I am tired.
Tired of doctors who do not understand or do not care,
Tired of excuses as to why they cannot help,
Tired that my friends’ (with GP) pleas for assistance are being ignored and they are being treated like drug addicts because they want relief from their pain.
Tired of being mocked and dismissed as if those with GP have “just a stomachache.”
I want treatments that work or better still, a cure. I am weary of trying to pretend like all of this doesn’t matter — or that it has its place elsewhere and not out in public.
We need awareness and then some. We need help and advocacy. We need treatments. We need cures. We need a year in which no more of us suffer and die.
Post Script
****To better understand living with hidden, “but you don’t look sick” disorders go to What’s Up With All the Spoons? Spoonies .
In the comments below, Melissa has added important links for those living with GP and their families. I have moved this to the post to make it easier to find. Pay special attention to the survey link and the link to communicate with the FDA. Providing the FDA with the personal experience is crucial to increase funding and expedite treatments.
Melissa’s Comment
The IFFGD (International Foundation for Functional Gastrointestinal Disorders — http://www.iffgd.org/) has posted a survey that seeks to collect data regarding the impact of GP and its symptoms on your daily life. If you are interested in participating, the survey can be found at this link: https://www.surveymonkey.com/r/iffgd-GPsurvey
In addition, the FDA will be holding a “Functional GI Disorders Patient-Focused Drug Development Public Meeting” from 1:00 to 5:00 PM on May 11, 2015. I would encourage any of you struggling with GP to consider joining the FDA webcast and submitting comments and replies to the questions posted on the FDA docket. You can find information about this panel and register for the webcast at http://www.eventbrite.com/e/functional-gi-disorders-patient-focused-drug-development-public-meeting-registration-15203090854. If you would like additional information or assistance with registering or submitting responses, please do not hesitate to contact me. If you click on the words “Facebook feed” in the above article, you will be directed to the Gatsroparesis: Fighting for Change community page (https://www.facebook.com/Gastroparesis.FightingForChange.Page). You will be able to post or send a private message from that site.
Tank you! for including a personal testimony from a member of our GP community! I am very appreciative and hopeful that with every voice, we wil be one day closer to a better quality of life and then a cure to this debilitating disease!
We are glad to shed light on what is happening to so many people. Thank you for your comment.
Ms. Deb, I am also very grateful to Medivizor for giving our GP community the opportunity to be heard. Many thanks for what you have done!
I’ve only had GP for a year, but it’s ruining my life I’ve never felt pain like this….also suffer with chronic pancreatitis…..has anyone thought it was their heart?
I went to be the ER 5 times because I thought I was having a heart attack. My pain was centered in my chest, and felt like a bruise everything I touched around it. My bp was extremely high and HR would jump up to 140-160 bpm. I started thinking it was panic attacks even though I’ve never had a panic attack disorder. My POS doctor even referred me to a counselor to deal with anxiety…something I already know how to deal with. I was scared of the pain, the unknown. I’m taking the gastric emptying exam next month to confirm what I already know and am already taking steps to manage. The management is working. 2-4oz of soft food every 2-3 hours. Mostly things like half sandwiches of peanut butter or mashed potatoes etc. Then I’m not in pain anymore. But to answer your question, I thought it was completely my heart.
I am having the exact same experience. I am sick all the time. I carry barf bags in my purse when I do have to leave the house. My stomach hurts all the time. I can’t eat. I have lost 40 pounds in under 3 months. But because I was overweight to start with they say these are all “acceptable side effects”. Really! Acceptable to whom. I have no quality of life. My hair is falling out and I can’t remember what I’m talking about by the end of my sentence. I fall alot and can’t sleep. I’m exhausted and grumpy and disheartened. How can this be acceptable? I even have a partial blockage in low intestine from undigested food. Yet still acceptable until it’s a complete blockage I guess
I have been suffering with GP for 8 years. years ago they finally figured out that it was GP. But still to this day drs don’t want to be bothered trying to figure out what to do for my pain. I cannot take narcotics because they cause more pain. I also have a pain in my side that’s been left after a gall bladder removal and they treat that with MORE PILLS. I cant stand not getting answers!! We need help now!
Thank you for sharing. Bringing awareness of gastroparesis to more people is step one.
I just stumbled upon this post. My husband has been battling GP for many years now. We were always uninsured and didn’t know that’s what was wrong. We learned to stear clear of things like pork, celery, garlic, onion and milk. I’m not sure if they’re all GP related. It’s really not worth finding out. Since covid19 hit and I was sent home from work he has been so so sick. Severe vomiting for days. He’s type 1 diabetic and 39 years old. He is currently in the hospital. He’s been vomiting for 5 days straight and nothing it stopping it. They weighed him in the ER-104 lbs😞 Its so heartbreaking to care for him. He is wasting away right in front of me.
Ms. Jenny, I am so sorry your husband is struggling. Have you seen a motility specialist? If not, I would highly recommend this. Diabetes on top of Gastroparesis greatly complicates one’s diet, I know. Prokinetics and antiemetics might help, but if not, perhaps feeding tubes are a next step?
Thank you for sharing! My husband, a diabetic, was diagnosed with gastroparesis in August 2020. All of August he was in and out of the ER. He just had another ER visit 2 days ago. They sent him home after only 7 hours. We are currently dealing with a full-blown episode. I’m scouring the internet looking for answers. I’m praying. I hate to see him in so much pain. It’s hard on our teenage children. Our entire household pretty much shuts down when dad’s sick, writhing in pain. We desperately need a way to help him. My heart goes out to anyone dealing with this condition. I pray that we all find answers, some help, a cure. Blessings and strength to you all!
I had this for about a year and it’s the worst
I can’t explain it to my parents that I feel sick all the time
Thank you so much for your comment, Ms. Veronica! The issue of pain control is definitely a difficult one. As I am sure you know, many pain medications (narcotics) slow motility even further, so doctors are very hesitant to prescribe them — but that leaves us with uncontrolled pain and few treatment options. It seems to me also that until the source(s) of our condition is determined, there will be no real cure. So many of us are labeled “idiopathic” and do not even know why we have this cruel disease. That is a very tough thing. We need further research. I wish you well, Ms. Veronica. Hang in there.
For those with gastroparesis pain….. Ask your doctor to refer you for Celiac Plexus Block… Takes the “brake” off of the stomach so improves motility, reduces nausea and blocks pain transmission. Many anesthesiologist sto the procedure but with reluctance due to rarity of need. Neurogastroentetologists also do it but are highly specialuzed and only a handful of them that do it…..
Hi Laura, Thank you for sharing your experience. Kathleen
Wow, it’s amazing how GP effects us all so differently yet the same. I have become what I call too lazy because of the GP and I hate that it upsets me and I have things to do and wish I had the energy to get them done it makes me sad.
“Lazy” isn’t what is happening. As Melissa describes, GP is a debilitating condition. Thank you for sharing how you feel.
Ms. Shari, it breaks my heart to read your comments. You are certainly NOT lazy! GP often makes it physically exhausting to try to tackle even the most basic chores. You are physically weak, ill, and you are expending the little energy you have fighting pain and nausea all day long, every day. It takes much strength and willpower to get up and face that every day. It is not your fault that you are sick, and I truly hope you will never feel guilty about the limitations imposed by your condition. I wish you well, Ms. Shari. Please take care!
Don’t use the “ L” word! Being tired/exhausted and/or depressed from being sick and not doing the things you used to be able to do or not being able to get the things done that you need to get done Is extremely frustrating I know. However be kind to yourself. Being exhausted and needing to rest a lot can sure lead to you feeling “ lazy” because you have no energy to be productive which can then easily lead to making you depressed. Keep reminding yourself though that chronic illness is in no way your fault and definitely not being lazy. Hang in there.
My daughter has been diagnosis with GP . she is 43 years old and has lost 70lbs in about 5 months. She is so very tired, has not ate anyway with out vomiting. She has a Dr at our medical center working with her, they have sent blood samples to mayo clinic. We are waiting on those results now. This is such a horrible thing to get, and there is no cures for it. What can a mother do?
You are supporting her and that is so important! I am so sorry that you and your daughter are dealing with this terrible disorder.
just support and love her, which unfortunately not a lot of people get.
Thank you Melissa for sharing the story of your difficult journey with this terrible disease, Gastroparesis. Even though it may vary in some ways, it is the story of others who suffer through this horrible illness. It robs us, and our families from having any kind of normal life. I always say that I’m not living, I’m just existing. Even with all that you struggle with, you still find it in you to help bring other people up, and to fight to bring awareness, and understanding about this very unknown disease. This condition can be fatal, and is not even recognized by the Social Security Disability Association, thank you for trying to change that. You are a light, and an inspiration to me.
Ms. Sherry, thank you so much! It is my hope, of course, that by telling our stories, we will help spread awareness of this cruel disease and eventually find better treatments and cures.
Advocacy is key and bringing awareness of gastroparesis and its impact on the life of an individual is vital. Thank you for sharing.
Awesome article. Thank you for sharing. We who always told “but you look so good” know the truth and suffer silently. GP needs more study and better pain management. You’ve helped many people with your words.
Thank you so much for your kind comment, Ms. Amy! It is my hope that once we are truly heard, more research, better treatments, and cures will be found.
Wonderful story and thank you so much for the recognition of this dis ease that so many of us suffer with daily and nobody understands. We are all waiting and hoping for better treatment and with awareness we are hoping that the understanding both from the medical profession and our own family and friends will increase.Thank you Melissa Adams VanHouten for sharing your story, and many of ours in the process. You are a blessing to us all in the efforts you have went to get recognition for us all.
That is so kind of you to say, Ms. Kim! Thank you! I am very grateful for the knowledge, support, and compassion I have received from the GP community. It gets me through each day!
Thank you for sharing your difficult journey living with gastroparesis. I, too, went through everything you lived through. I was sent home after various hospital stays with Reglan. That medication made things even worse for me. I felt anxious and did not sleep for months – lost 27 pounds and looked like a skeleton. I eventually sought help from a psychiatrist who prescribed medication for me to sleep. That was a godsend. To make a long story short, I never though I’d be able to eat again. I went from doctor to doctor, hospital to hospital, nutritionist, even to Temple University to treat with Dr. Parkman who prescribed Domperidone and medication for acid reflux – eventually getting botox in the pyloric muscle. The diet that’s online for us is just awful. Doctors through up their hands and you have to do so much of the research to get the help. The pain was so unbearable that I had a hard time functioning. I did research and asked my doctor if if Cymbalta would be a good addition. Started with 60 mg and felt better. Then 120 mg and pain is gone. It didn’t happen overnight and I have days where there is some pain but nothing compared before. However, I continued to vomit daily, even while working! Somehow I found the only motility specialist in NYC – an angel on earth. With patience and understanding, not to mention sincere concern and care, evaluated me and diagnosed me with rumination, secondary to gastroparesis. I was prescribed Baclofen to relax the esophageal muscles. MIracle. I only vomit if I overeat. Today my treatment consists of Cymbalta/Remeron (sleep, nausea, pain), and Baclofen. I live an almost normal life. Trust me, I thought I was a hopeless case and wished more times than I care to remember that God would take me. I contemplated suicide many times but I just couldn’t do that to my family. Here I am, five years after the diagnosis and living a pretty good life. Yes, it’s awful when I smell food and see people eat things that I can never have again, but please know that there is hope. You have to advocate for yourself and kiss quite a few doctor/frogs to get the right help. Please email with any questions you may have with my treatment/doctor information, etc., you may have. I love you,all my virtual friends. I pray for us every single day of my life. Blessings to you all, Rose
My daughter has diabetes and I am quite certain she has gastroparesis – she is 39. She has been suffering for 3 years with this wretched disease. It has been totally debilitating and we have not found any real answers on how to treat this. I wondered if I could have informaiton on the doctor you have seen in NYC. Thank you so much.
Hi, Ms. Ann! I am hoping I can help answer your question. I am not certain which doctor provided Ms. Rose with care, but I can tell you that Dr. Barry Jaffin has been recommended by some in the NYC area. He is a motility specialist, and his contact information can be found at this link: http://westsidegastroenterology.com/. We also have a Facebook-based group where you might find additional information regarding doctors in your area: https://www.facebook.com/groups/902905033057797/. Finally, many who live in the NYC area also travel to Philadelphia to see Dr. Henry Parkman, who is also a well-respected motility specialist. I hope this information helps you. Please take care!
Please contact me i’m in severe shape remeron gave me someto relief. Found it by accidente.
Great article Melissa. GP affects over 5 million Americans, so it deserves to be better understood.
Jim, thank you so much! I absolutely agree. We need to be heard!
Hello to whom it may concern I pray that this sickness will go away so that you can see your child get married have kids and see her graduate in jesus amen.
Thank you very much, Ms. Patricia! Your compassion and prayers mean the world to me. Please take care!
Thank you all for your kind comments! And thank you to Medivizor for including this!
Ms. Lavina, unfortunately, this is an all-too-common story. The Mayo Clinic is very well respected, so I hope you can get some answers there. Don’t give up! There is help, but sometimes it is difficult to find, and it can be a matter of trial and error. I can help you and your daughter find a good online support group, if you would like. If so, click on the words, “Facebook feed” in the article above, and we will go from there. Please take care!
My name is Kathy and suffered with GP for 4 years without a clue what had taken over my life! My Gastroenteroligist recommend a Gastric Bypass of sorts and I am happy to say, Aug will be 4 years symptom free, Praise God. I have my life back and am 110 pounds lighter and can eat, small amounts but a small price to pay to have my life back. I pray everyday for all of us effected by GP.
Ms. Kathy, I am so glad to hear this! It is always nice to hear the positives. Although it is not a typical treatment for GP, I have heard from a few people who have been helped by gastric bypass surgery. Perhaps further research in this area will be pursued. Better treatments (and cures) are what we need!
Hi. My name is diana.i was just recently after many tests diagnosed with g.p. and my g.i. doc wants to do a gastric bypass of sorts .i have lost so much weight! I am so confused as to what i should do? I do know my body cannot keep going this way.i am reading all of your stories and are encouraged by some.thank you.
Hello. Please don’t loose hope! I was diagnosed with GP 3 years ago. I too was only able to eat solid foods. I have autonomic neuropathy, GP, adrenal insufficiency, hypoglycemia, small fiber neuropathy and the list goes on and on. Recently, I had to go to the ER because I was having an adrenal crisis. I had gotten sick and lost 15 pounds (more than the 40 I’d already lost due to GP) suddenly. They didn’t recognize the symptoms and only ruled out a heart attack. I wasn’t able to stand, chest pains, migraine, nausea, etc. I had told them when I got there that I had adrenal insufficiency. A week went by and I still wasn’t feeling much better so I started doing research into adrenal crisis. My Endo had never explained what the symptoms were either. I increased my hydrocortisone and almost immediately started feeling better. I also noticed my stomach was “functioning” a little better and I got curious so I ate a little bit of something I hadn’t been able to eat in 3 years and had NO pain, no after effects, no nausea, etc. A month and a half later, I’ve regained my weight, I am able to eat foods that I hadn’t been able to. I still can’t eat greasy foods, red meat, pork, most veggies or fruit but I have a blender. I’m able to eat pretty much anything else!! My GI told me that Endocrine disorders can cause GP and so that’s why I started getting better when I got on the right dosage of hydrocortisone. This is also the underlying cause of my autonomic neuropathy. Don’t get me wrong. I’m not suddenly cured and am still having GP issues but the fact that I can eat things other than only soft foods? So, I ask you to please advocate for yourself and make the doctors do any and every Endocrine test to see if that might be what is causing your GP. Cortisol, Blood sugar, pituitary or adrenal issues. <3
Ms. Michelle, thank you so much for your kind reply! I have actually had endocrine, thyroid, adrenal, kidney, and many other tests. I have seen a rheumatologist, a cardiologist, a urologist, and other specialists. Unfortunately, my GP has been labeled idiopathic. The doctors suspect that it was caused by a viral or bacterial infection (because of its sudden onset), but they do not have proof of that. But believe me, I have not given up. Far from it! I consider myself a persistent advocate for myself and others. A small group of us have even started a gastroparesis advocacy group and community page on Facebook. If you are interested, you can find our community page by clicking on the words “Facebook feed” above. You will find a link to the advocacy group on that page as well. I am grateful that you took the time to read this and to respond in such a compassionate manner. I wish you all good things in your GP journey!
I have suffers with GP (gastroparesis) since July of 2012. Horrible pain when eating, sometimes even without, nausea to the point I am sick to my stomach all day. Food has became a poisen to my body. It seems as though anything I ingest must come out or I am beyond sick. I no longer go out, I no longer can participate in many activities that I use to enjoy. It is such a life changing, limiting condition that we have to live everyday with little help from our doctors, simply because they are not educated, or have no answers or treatments for us. I currently get most of my nutrition from an NJ feeding tube. Goes through my nose and bypasses my stomach and into my intestines. Such a terrible illness, but one good thing out of this you ask? The friends I have made through the support groups. They are the most kindest and sweetest, willing to help you people I have ever met. I breaks my heart that we all have to suffer from this.
Thank you very much for sharing your experience, Ms. Tracy! It is funny that I, too, refer to food as “poison” sometimes. The food we need to survive is the very thing that causes our almost unbearable pain. Every day we must try to balance our nutritional needs against the agony caused by ingesting it. And I also agree that the support groups have been an invaluable resource. I hate the disease, but I dearly love the people I have met because of it. I wish you all the best. Please take care!
Ty so much for your story… I have the gastric pacemaker since July 21st last year it’s made a huge difference for me an I’m very fortunate for that… I still have bad n good days etc… but again my sidekick helps. Ty for helping to make awareness bc we deserve to be heard!!
Thank you, Ms. Laverne! The gastric pacemaker has helped many of us. I am so glad you have benefited from it! And yes, we do deserve to be heard! Take care! I wish you good days!
Myself and my daughter have GP and my son to a lesser extent. We are just starting our journey but have been trying to figure out what we have for a couple years. I am already on pain medication in general and on Dexilant Bentyl and promethazine for the stomach pain and nausea, making toddler size meals not hurt as much. Though none of this really helps with the food just sitting in there making us sick. I go in next week to get botox injections in the spot that the food leaves the leaves the stomach.
Thank you very much for sharing your story, Ms. Evelyn! I have not personally tried Botox injections, and I do not know a great deal about them, but I do know a few people who have said they have been helped by this treatment. This is yet another area I would love to see further researched. I truly hope this treatment helps you and that your children can find some relief from their symptoms as well. Take care!
Medivizor thank you for publishing Melissa’s GP story. Melissa, I appreciate you sharing your personal story, that takes a lot of bravery. As a Gastroparesi patient, myself, I can relate to your story on many levels. When I was diagnosed 2 years ago, I felt alone. I was very thankful to find wonderful GP support sites on Facebook (managed by GPers) Noone, including me, had ever heard of this disease. My family, friends, and many medical providers still don’t understand this disease because there a very few resources available. It’s awful when GPers are told that there are no other options available to help them or that their doctor doesn’t know how to treat them. It’s confusing when doctors disagree or suggest non FDA approved meds from a different country or medicines with strong FDA warnings. I hope that we are able to bring much needed awareness to this disease not only within the public population, but also in the medical community. Gastroparesis is in dire need of new research and new treatment options. Thanks again 🙂
Thank you so much for your comments, Ms. Trisha! I wholeheartedly agree that we need awareness, better treatment options, and cures. The medical community and the general public need to know how we struggle on a daily basis so that they can begin to understand how important it is to conduct further research and develop safe and effective treatments (and maybe cures someday!). I also agree that the support groups are a wonderful source for anyone who is struggling with GP. They get me through each day!
thank you for sharing your message with others. My dear friend has suffered with this for many, many years. It is so hard to watch her constant struggling with it. May I also say what strong, courageous woman she is. She battles this illness living in a remote area by herself and has to drive long distances for her many trips to doctors and hospital. She has constant issues with feeding tubes etc, not to mention the constant pain, and waking up every morning wondering if she is going to have a bearable or unbearable day. She is the most wonderful human being, and rarely complains and just keeps fighting the good fight. Despite her totally incapacitating illness she always looks amazing, and is a inspiration to all her know her, even the local supermarket, where the only food she buys is dog food for her wonderful and constant companion ‘Bella’ and beautiful Staffordshire. For a long time the supermarket people called her nicely the dog food lady, they now understand she cannot eat anything and is totally fed by a tube fed formula, and help her any way they can. Through all this she is a wonderful mother and grandmother, to whom her family are everything.
To all those out there suffering I pray for a wonderful, affordable solution to your illness, and send you love and admiration that you’re still fighting.
Thank you very much for your kind comments, well-wishes, and prayers, Ms. Rosalie! So many in our community are forced to travel in order to find a gastroenterologist who has knowledge of and treats gastroparesis. They are few and far-between. It is an additional burden, especially for those who live alone and have no one to assist them with their transportation and medical needs. I am grateful your friend has found such an understanding soul in you. Much appreciated!
I’m the president and founder of G-PACT, the only non-profit really fighting this. I’ve had it for over 20 years, all tubes, lines, ports, tPN, ostomies, all meds, etc. now colon is detached. I also have CIPO and gad a five organ transplant (full gut) in 2006. We Are doing do much, and there’s a lot more progress and hope than 1994! But this us a frustrating illness. Treatment has actually improved some over time, and we do have the FDA listening to us finally! There’s an event speaking to them in May and making our case.
Thank you so much for your reply, Ms. Carissa! I, too, am hopeful that the upcoming FDA panel will help us further our cause. I would encourage any of you struggling with GP to consider joining the FDA webcast and submitting comments and replies to the questions posted on the FDA docket. You can find information about this panel and register for the webcast at http://www.eventbrite.com/e/functional-gi-disorders-patient-focused-drug-development-public-meeting-registration-15203090854. If you would like additional information or assistance with registering or submitting responses, please do not hesitate to contact me. If you click on the words “Facebook feed” in the above article, you will be directed to the Gatsroparesis: Fighting for Change community page. You will be able to post or send a private message from that site. Thank you for all your efforts to support us, Ms. Carissa!
Excellent article Melissa! Thank you for taking the time to write it and shedding light on what we go through everyday. Gastroparesis is just cruel….
Thank you very much for your kind comments, Ms. Sue! I wish you well! Please take care!
Thank you for sharing your story to bring awareness for Gastroparesis, you are an inspiration. I hope many see what you and others are doing to bring positive change for the ones who suffer with GP, it is a horable condition to live with, one day you can be living life, involved in activitys, and going out with family and friends, then it’s gone, it becomes difficult to live in a normal world, with little understanding from others. May your efforts be awarded, and god bless you!
Ms. Sherry, I very much appreciate your kind words! I know what a struggle it can be to simply get through the day. I am very grateful for all the support I have received from the GP community. It is my hope that we will be heard and we will see great progress in 2015! I wish you well!
For those of you living with gastroparesis, there are some very significant events currently taking place. The IFFGD (International Foundation for Functional Gastrointestinal Disorders — http://www.iffgd.org/) has posted a survey that seeks to collect data regarding the impact of GP and its symptoms on your daily life. If you are interested in participating, the survey can be found at this link: https://www.surveymonkey.com/r/iffgd-GPsurvey
In addition, the FDA will be holding a “Functional GI Disorders Patient-Focused Drug Development Public Meeting” from 1:00 to 5:00 PM on May 11, 2015. I would encourage any of you struggling with GP to consider joining the FDA webcast and submitting comments and replies to the questions posted on the FDA docket. You can find information about this panel and register for the webcast at http://www.eventbrite.com/e/functional-gi-disorders-patient-focused-drug-development-public-meeting-registration-15203090854. If you would like additional information or assistance with registering or submitting responses, please do not hesitate to contact me. If you click on the words “Facebook feed” in the above article, you will be directed to the Gatsroparesis: Fighting for Change community page (https://www.facebook.com/Gastroparesis.FightingForChange.Page). You will be able to post or send a private message from that site.
We are also hopeful that a congressional bill that would expand research activities into gastrointestinal/motility disorders (HR 842), which died in the last congressional session, will be reintroduced in the current session. Please consider contacting your congressional representatives regarding this measure. You can find information about your representatives and any legislation that is introduced at https://www.govtrack.us/
Thanks for sharing your story and shedding light on GP. I don’t suffer from it but I do know a few people in the type 1 diabetes community who do (it is sometimes caused by nerve damage as a result of long-term diabetes).
I know from those people that there are some treatments available at least for some forms of GP. There are tablets that you can take with food to aid digestion, somebody I know adds some sort of enzyme to their for before they eat it and it starts the digestive process and I have heard of people getting a sort of stomach “pacemaker” that they claim is an effective “cure”. Not sure if any of these options would be suitable but thought I’d share them in case the info is of any use.
Mel, Thank you for reading this post and for sharing your knowledge here.
Ms. Mel, thank you so much for your thoughtful comments! I do appreciate all the helpful information. I actually take Domperidone, which I consider a life-saver. (It is not for everyone, of course, and this is not intended as a recommendation. That is best left for a discussion with your doctor.) The pacemaker does help many people, but it is used mainly to control nausea. At this point, my nausea is pretty well controlled by the Domperidone. For more information regarding the gastric electrical stimulator, you might like to look at this link: http://www.ucsfhealth.org/treatments/gastric_electrical_stimulation/.
Hello! I suffer with Gastroparesis as well. In my case, I am overweight and cannot seem to lose much weight, unless I’m having a really bad flare up and can barely eat. I know I’m not the only GP sufferer who is overweight. I know many others, although I do know GP causes most people to lose weight, and be underweight. Each of us is different in what we can eat and what our symptoms are but every single one of us suffers daily from having this disease that there is currently no cure for. Treatment options are limited and medications used for GP and nausea do not help me at all. Some of my symptoms are chronic nausea (24/7,) chronic fatigue, pain, and I was diagnosed with Diabetes type 2 about a year after I was diagnosed with GP, so I don’t believe, in my case, that diabetes could have caused the GP, so I’m not sure how I got it. I do know the vagus nerve somehow gets damaged which causes the stomach to stop working properly and it basically causes stomach paralysis. So, food sits in the stomach for too long and causes many people with GP to vomit when they eat. I’m very lucky in that I don’t vomit when I eat but I do have moderate to severe nausea every day and every night. I don’t sleep well either, so that just makes things worse. I had never heard of GP until I was diagnosed! I did some research and found some support groups on FB and I found so many others like me; some of them much worse, and even though I hate that we have to live with this disease, I was so glad to have found others who understand! I have had to change Doctors many times because they tell me they don’t know what else to do for me, and some people I am close to, think all I need to do is lose weight, eat right, get out of the house and do things, and suddenly I will be just fine. OMG! I would like to see GP become a disability in Social Security’s eyes, and I would like to see research being done to help find new treatment options, as well as a possible cure. People need to know that this disease exists and that it affects anyone from babies to the elderly; men, women and toddlers, and that more and more people are getting diagnosed with it every single day. I hope for a treatment that may one day be discovered and that I can try it and get some kind of relief, but until then, all I can do is carry on and do the best I can to live life. It is so hard to feel sick and tired and in pain all the time and to miss out on family events, time with friends, traveling, and so much more. It in turn causes depression and anxiety and many of us have more than one health problem going on. So many people with GP can’t eat solid foods, while others can only eat soft foods, or blenderized foods, and others require a feeding tube. Malnutrition is another issue and in some people the nutrients aren’t getting absorbed by the body. I could go on and on but I think you get the point. Those of us with Gastroparesis suffer terribly every day, even though we may look good on the outside, and life is very difficult. I pray for a cure for us all. Thanks for listening.
Tracy, thank you so much for your informative comments and for sharing your story. Gastroparesis certainly does affect people differently, as do the medications and treatments. And the isolation and depression associated with it often get overlooked. I wish you much luck in your fight. Please take care!
Also one can actually gain weight due to having to eat non regular nourishing foods. Family does not even get it, I am so tired of the comments I hear. They have no true idea and do not understand all the other symptoms such as fatigue, weakness, hair loss, etc, etc.
Thank you for your reply, Ms. Sharon! I am not sure anyone who has not suffered from gastroparesis can truly understand what it is like. I am thankful that the support groups offer a safe place where we do understand each other and can relate to the daily struggle. I wish you well!
This is My Gastroparesis Jorney
Gastroparesis the beginning. I believe my journey began in 1989 with the first migraine, but I didn’t realize it. The first migraine I had was a reaction to Indocin. I thought, at the time! And it may very well have been! What you also need to know? Is that I was an avid exerciser, biker, jogger, and really worked at being healthy. Always had sinus and constipation issues but did my best to get around those without slowing down and you would not see me near a doctors office~~ until it interfered with my life! Which one winter it did with pleurisy… My Dr just shook his head, when I said, ” I can’t run… Because it hurts to breathe,!” And he says, ” well yeah!” One thing which might help to understand my personal tenacity? Is to know, I was hit straight in the driver’s side door in 1990. I was leaving an observation of elementary school to then drive two hours for exams towards the end of a semester, to finish a degree in early childhood education! My car was totaled, my tooth knocked out, lower front jar broken, muscles pulled from back of my neck, and all I could think of was “this is not! Happening right now! I am finishing this degree!” I would get my mouth wired, go home, return to the hospital with concussion symptoms and AGGRAVATED! But would return to my classes in a neck brace. Okay, so fast forward to many years later and I begin to have non- stop stomach viruses. They were also linked to a period of time with massive migraines, sinus polyps, walking pneumonia, two sinus surgeries, allergies, and then the hunt began. 1996 I had a hysterectomy and appendectomy because of repetitive ovarian cysts bursting and forming with endometriosis. Along with the ongoing -unrelenting GI issues. Things would calm for a period of time. Then I would go into fight to keep my job to only lose it again with nausea, vomiting, diarrhea, abdominal pain recurring again with bouts of constipation. The dehydration and migraines with a merry- go- round of symptoms hiding themselves from the normal tests made diagnosis difficult back in 1996 – 1998. I would be fired from my teaching job… Get another job .. Then be fired from it while in a hospital bed. Then while in the gastroenterologist Merry-go-round … a precious Doctor told me … “I am referring you to a motility specialist.” I immediately asked him, ” do you think I am crazy? What kind of doctor is that?” Because to be honest, this was getting a little crazy and at this point, I had never heard of a motility specialist! 1999 He reassured me and this phase of my journey would lead me to Dr Thomas Abell … Thank God! Who removed the question marks and got everything stabilized enough to do testing and begin the diagnostic phase. The answers weren’t easy.. But the point of this whole story is … I would not have found out, I had gastroparesis, a paralyzed colon ( pseudo-obstruction) , received help for these migraines ( abdominal based) and went on to peel back the layers of sjogrens and mitochondrial malabsorption disorder…. Neuropathy. ( i probably left something out … I live in a semi- state of denial) The first set of doctors were the “best” but clueless! The second tried, but referred me, and that led me to the “third time is blessed! ” The third attempt I was blessed enough to meet a Doctor who had trained under Dr Thomas Abell! 2000 He would go on to send me to South Carolina and Dr Lahr and have a colectomy – which changed life measurably. Did not change the facts, but made it less miserable! So, from a diagnosis in 1999 to today trying to stay alive~~~ the theme is persevere one moment at a time. Doing what is necessary is not easy, nor do we always have the strength to do so, but it is better to go forward .. No matter how tedious or difficult! So, on this synopsis of a journey which did not accept the gastric electrical stimulator, I have gone through a PICC line placement from 1999 – 2005, port-a-cath placements from 2005 – present. ( on fifth port) I celebrate today, but pray for a better tomorrow and research with diagnosis codes which allows for treatment without hearing ” we know you need this, but because others have messed up – we have limits which have been put on us” Then you ration your meds.., and the insurance company decides not to pay for an item which meets the criteria for which they are basing their denial! We are survivors of this journey- have perseverance ~~ even in those moments when we feel our well is empty! 1/11/2015
Proclamation to Establish August as Gastroparesis Awareness Month | Petition2Congress
http://www.petition2congress.com/17439/proclamation-to-establish-august-as-gastroparesis-awareness-month/
Thank you so much for sharing the link to the proclamation and your story, Ms. Deb! One moment at a time gets us through the roughest times, doesn’t it? I wish good days ahead for you, Ms. Deb!
We all have our own stories with gastroparesis some may be different but many are the same…. We never know day by day, hour by hour or even minute by minute what is going to happen… We maybe fine and pain free for just a second and then the next we’re on our death beds… Everyday is constant battle not a struggle but a BATTLE… A battle against our own bodies, a constant fight, a constant WAR!!! We are our own individual soldiers but we too need help… This may not be cancer but to us it is our cancer… And we need to find a cure!! This is not a game, this is our lives… Daily nausea, vomiting, constipation, diarrhea, liquid diets, feeding tubes, bezeours, malnutrition, dehydration, exhaustion, chronic pain, pressure and bloating… Walking around like we’re 6 months pregnant all because we are packed full of Un-digested foods creating what we call our food baby’s… And yet we are the ones who maintain a constant smile on our faces because we are embarrassed and don’t want others to know we are sick… We’re not looking for pity or sympathy… Just belief in us and a damn cure…. So please, when we say we are sick, believe us, WE REALLY TRUELY ARE SICK…. Please please please help us get awareness out there to everyone in the entire world… Gastroparesis is bigger than just our nation it effects others as well… Like I said, it may not be cancer, but to us, it is our cancer!!! Please help raise awareness!!!!! Thank you and God bless
G-PACT is responsible for the FDA event. Watch our fan page for two huge research surveys we are doing in conjunction with the genetic alliance and the FDA which will go out to thousands researchers and physicians once all data is compiled. Unprecedented, scientifically based surveys addressing many issues to help researchers know how to direct their research focus. We would like no less than 2500 participants. Follow our page at http://www.facebook.com/GPACT and read the pinned post with the recent press release from the genetic alliance on this unprecedented study and get involved once we gave it available to,the public. This is the best way to get research, as the results are being analyzed by professionals and sent to researchers nationwide. Very extensive survey.
My partner discovered this site by accident…ironically researching ‘Melissa’ a herbal med for stomach upsets!
I’m glad he discovered this site as it has boosted me. I’ve had gastroparesis for 5 years now. Like many of us, I had it long before that, but the symptoms began 5 years ago. Symptoms were gradual initially, but the pain and nausea has gotten worse, so I have severe gastroparesis now, and have done for the past 2 years. Food is my enemy, and even liquid food brings pain, nausea and severe swelling of my stomach. I actually take on the shape of a 7 month pregnant woman every night, and as I am 5 stone 11 pounds (36 kilos), you can imagine how much my skin stretches. My ribs feel like they are breaking, and the air and fluid etc push on my internal organs until I can hardly breathe, let alone move around.
My partner even has to get me into my PJs and help me into bed each night. Climbing the stairs is even a challenge. I have boxes of heat pads, and my hand is permanently holding my stomach as if I’m due to give birth any minute!
I am a positive person, always have been (not that you’d know reading this), but GP strips away your armour, bit by bit, and you lose the ability to rebuild it, as GP never gives you a break, night or day.
I work as a teaching assistant in the UK with 11 – 19 year olds with special educational needs in a mainstream school, so I work with the more challenging teenagers. I have to motivate them and be motivated. I have worked there for 10 years. Before that I was what you might call a high flyer, in graphics and media, managing teams and making big decisions, making lots of money (for my bosses, not me!), BUT i got sick gradually, could barely manage eating, lived on pain killers and just hit burnout, especially as I was told that I had IBS (gastroparesis wasn’t really heard of then!). I knew it was more serious. I gave up my job, or was forced to, and did volunteer work and studied for 2 years, trying to get back my strength. I ended up getting the job I have now, because like all of us, there are those things called bills! I am no longer a ‘manager’, I don;t earn that much, but I don;t do so many hours, I don;t commute because it’s local, so in a way it is less stressful. The GP makes holding down any job, very stressful though! I miss having a career, especially one I had worked so hard to get.
On starting working again, I saw a private consultant. Instantly he found many internal digestive parts not working properly. My pancreas was insufficient and my stomach wasn’t breaking down the food, so I went on high dose enzymes. I also worked with a dietician and things improved for a small time. However, I was gradually decreasing my food intake, and had gotten used to it.
My weight began to fail, as did my health. Tests after tests eventually showed my stomach contents weren’t moving and I was diagnosed with GP. So, diet, drugs, etc later and I am suffering more and more. It took 2 and half years to get my boss to reduce my hours ‘by an hour a day’! If I take time off to go to hospital, or have time off sick, I am summoned to a meeting with the Head, and have to explain whether I will be off again, when, for how long etc. I find working with GP degrading in that respect. I feel like a liability! I work hard and overcompensate at work, and colleagues are really glad when i work with them as I work hard and well, BUT it is little consolation when you are sitting with a Head who has no empathy!
At work, people eat cakes, drink tea and coffee and complain about being tired. I don’t eat or drink even water while I am at work (7:30 am – 2:00 pm), because if I did I would feel so sick and be in too much pain to stand. I also wouldn’t be able to drive home. I feel exhausted ALL of the time at work, but I don’t complain or mention it as I don’t want to be a ‘moaner’, so I just empathise and sympathise with everyone when they have a cold etc.
I have spent time and energy trying to explain GP and EDS (Ehlers Danlos Syndrome, as I have both, (I even emailed information sheets to the Head), but folk get bored of asking how you are after a short time – that’s the thing with long term chronic illness, it’s not the same as having flu, or something you get better from. GP is an unknown disease, unlike Chronic Fatigue, Diabetes etc (people at work have those conditions and nobody questions their sick leave etc, and they get sympathy when they return etc). People can’t really understand having something wrong that gets worse… lucky them.
I am exhausted all of the time. Because of the EDS every joint hurts and I get dislocation too. I dread bedtime with both EDS and GP. Each night I go to sleep and hope I don’t wake up, but that makes me feel guilty because I have a loving partner and a mum who I love dearly and want to support, especially as I lost my dad last year, who I miss dearly.
I have compromised and given up so much due to this disease. I have, like you Melissa, followed the advice of dieticians, consultants, doctors etc, and been strict with my lifestyle. Yet, still, food and drink causes misery. I am due to have a PEG fitted to help release the gas, and hopefully liquid too, but I do not want to feed via tube yet.
It is unbelievable to think that a disease can even cause you to suffer by sipping water. I have a raging thirst most nights and my partner takes my water bottle away, because he, and I, know it causes more agony. What other disease prevents you from sipping even water?
And yet, no wonder meds, no posters, no worldwide acknowledgment of this condition, virtually no funding research, or testing visible. It’s frustrating having to explain to people what the name alone means, and even descriptions on the internet seem mild – general descriptions of ‘slow motility’ sound tame, and nothing like the reality of what we go through minute by minute. Information on the internet needs to be re-addressed and rewritten, bringing it up to date, and more realistic. Hospitals should be training specialists in this condition. Let’s face it, we need departments of our own. When a condition is so painful and debilitating that you want to die day after day, that’s a disease/condition that needs recognition. I’m in the UK, and the US does so much more.
To all of you with GP, I wish you well, and hope things change for us all, for the better… x
Ms. Di, it breaks my heart to read your story. It is quite poignant and all too familiar. I hear these same sorts of stories every day in my support groups. We have great need and few answers. I especially sympathize with those in the UK because I know that what you say is true; there is so little awareness there. I invite and encourage you to join one of our online support groups if you have not already done so. If you click on the words “Facebook feed,” in the article above, it will take you to our community page. From there, you will be able to send a private message, and I will gladly provide you with links to various gastroparesis and EDS groups. You may also e-mail me at gpfightingforchange@gmail.com for these links or any other information I can offer. You are not alone in your fight, and we would love to chat with you. Please hang in there. I know it is a rough journey. Take care and best wishes!
My aunt was recently diagnosed with GP and has been on nexium for several years for a hiatal hernia. She is very healthy other than this issue. Has anyone else been diagnosed after long term use of nexium?
Ms. Misty, I have heard a few people in the groups ask this same question; however, I am not aware of any scientific studies which conclude that Nexium or other proton pump inhibitors cause gastroparesis. PPIs are actually used in some cases to treat symptoms (dyspepsia, GERD) sometimes associated with GP. You might consider discussing your concerns with your doctor, though. Unfortunately, there are far too many “unknowns” regarding the causes and treatments of gastroparesis. I wish you well in your search for answers.
Protein pump inhibitors, along with several other groups of drugs can cause gastroparesis because they cause Vitamin b12 deficiency. Vitamin b12 deficiency ( which had many other causes) results in demyelination of nerves, and in people where the vagus nerve is affected, the chief symptom is gastroparesis. If left untreated long term, this nerve damage can become irreversible . Unfortunately this deficiency is not on many doctors radar, and so patients are not tested for it, and even when vitamin b12 is tested, doctors do not believe that neurological symptoms such as this could be caused by a simple vitamin deficiency. My daughter had GP ( amongst many other symptoms) when her b12 level was very low, but all the specialists I took her to see told us there was no connection. After several weeks of self injecting methylcobalamin ( active b12), she no longer had any symptoms of GP. I wish that the level of awareness of this problem could be raised amongst both patients and doctors, as currently, I suspect a lot of people are being told their GP is idiopathic, and are left to suffer, when harmless vitamin injections would have cured them!
Thank you so much for sharing this with us!
Please, keep in mind that not everybody can tolerate methylcobalamine b12, for some it may worsen the condition. In this case other forms may be better (like adenosyl or hydroxy)
Ms. Caroline, your comment is quite interesting because I have only heard of this in the reverse-case scenario, i.e. gastroparesis causes B12 deficiency. In any case, it would seem like this idea deserves further investigation. I do know that Vitamin B12 is crucial in maintaining one’s nervous system, and many people in the support groups take B12 injections (with mixed success). Thank you so much for raising awareness of this possible connection!
I have recently been diagnosed, and given little support. I’m trying to find some place other than Facebook to connect with others. I need to know early on, does it seem to progress or get worse before it levels out? I have not felt well for a couple months but the last month it has gotten worse and the last couple weeks the nausea is increasing and eating is becoming more difficult. I didn’t know if it was a phase or the sickness developing. I also don’t have pain in my abdomen, it’s more right up under the center of my rib cadge to my back. So much heart burn and indigestion all the time no matter how much medication I take. I’m confused and feel alone in this.
Hi, Rae. Gastroparesis does sometimes progress, but not always. We have some in the groups who do get worse, but we have many who stay about the same or even improve as well. It depends largely on the cause and on how well an individual responds to the available treatments. For groups outside of Facebook, you might try the AGMD at http://www.agmd-gimotility.org/. They host a series of monthly calls that serve as a support group of sorts. You can find a list of offerings and register for any which interest you on their site. Hope this helps!
For Those With Idiopathic GP neurological disorders Anxiety Might be A cause so it can affect the Vagus Nerve even damage it . Maybe check For Magnesium supplement, Valerian Root Passionflower, Massage and/or drugs medication anxiety like Xanas.
🙂
It’s important to talk to your physician for guidance on treatments. Thank you for commenting.
Melissa, thank you so much for all you do to help raise awareness, to lift our spirits while facing your own challenges. And thank you to whom ever gave you this platform to reach out even further than our groups on FB. I can identify with a little bit of everything said in the comments above. I first got sick 3 days after burying my precious grandmother. I just thought it was a virus straight from the pits of hell. It felt like someone had their hands in my abdomen and was wringing my guts like one would a dish rag. The pain was excruciating!! The nausea was like morning sickness times a hundred but due to the fact I had a Nissenfundoplication in 2006, I literally cannot vomit so I would just dry heave constantly causing more abdominal pain and the unpleasant experience of peeing all over myself, the floor or hospital bed. 3 months later, I got my diagnosis of gastroparesis. Like others, my dr talked to me like it was no big deal and he put me on the typical GP diet. It didn’t work…I kept getting sicker and was in the hospital over and over due to dehydration. My bp at one point was 60/37 and I felt like I was slipping away and what scared me most, is that I wanted to. I didn’t want to live if this was gonna be my life. Thanks to the support of my family and my GP family, I realized I had to put my big girl panties on, and figure out how to live my life. I have a husband of 15 yrs and 3 kids (ages 19, 14 and 12) that need me.
So, it’s been a process but I continue to learn how to live my life with this disease and pray desperately for a cure or at least help.
There needs to be light on this disease! It needs to be known and heard of like MS or any other debilitating disease. I am adding my voice to my GP family’s voice and we demand to be heard, we deserve to be heard and we will be heard! I love you Ms Melissa and the rest of my GP family and if I go out, I will go out fighting!
Mandy, Thank you for sharing your story and please keep fighting. We’ll continue our support of you and the gastroparesis community. Kathleen
Thank you so much for your kind comments, Ms. Mandy! I am grateful for your support and help in our community!
Dear Melissa, so sorry that you and so many others are going through it! I wanted to share my story in case it could help.. i have mito dysfunction, and 5 years ago I got a sudden onset of GP. Lost 20lb in just a few weeks, could not eat or drink. Stayed in bed for days with extreme fatigue. CT scan and endoscopy did not show anything specific, so the doctors said they can do nothing with GP and send me home. I did not give up and went to accupuncturist, who made me a tincture that tasted so horrible I cannot even describe, but I drank it because I had nothing to lose. After 3 days I was able to eat soft food and finally got out of bed and in 7 days I ate my first chicken and rice. A baby portion, but it was my victory. I finally stopped losing weight in 10 days after I took that “potion” and went back to normal in 3 months. I am still having the stomach problems, and I know that GP can happen at any time, but I also know that recovery is possible. Hope y’all will feel better soon!
Thank you so much, Ms. Lena. I am very glad to hear you found something that helps. Always hope!
Amen. You are 100 million percent correct. We are treated like drug seekers. We are seekers we seek RELIEF FROM OUR DISEASE. I hate ers and will never ever go back. Hugs to you my GP sister
Thank you, Ms. Mellee. Hoping always that by spreading awareness we can change this. Very sorry you have had to endure this. Hugs to you, too!
I’m just glad to know I’m not alone
Never alone, Ms. Nancy! Thank you kindly for taking the time to read and reply. I wish you all the best!
On Aug.31st I was fine and on September 1st I woke up sick to my stomach. After I had been vomiting for 6 days my mom took me to the closest hospital they treated me like crap gave me a bag of fluids and some nausea medicine and sent me home. When I had been sick for 11 days my husband took me to a different hospital and with in and hour and a half and they admitted me and I was there for 4 days and all they did was give me fluids and nausea medication and pain medication and sent me home. I have been to the ER 7 times sense this all started 8 months ago. I got my GP news on February 22nd and I have been in bed for the last 7& 1/2 months. I am new to this and just need some help with diet and Drs appointment info.
Hi, Ms. Aubrey. I am so sorry you are struggling like this — and that you have had such bad experiences. I can recommend a couple of sites with very good diet plans: http://uvahealth.com/services/digestive-health/images-and-docs/gastroparesis-diet.pdf and http://gicare.com/diets/gastroparesis-diet/. Also, if you are searching for a GI, you might consider both the list on the AGMD’s website at http://www.agmd-gimotility.org/referrals.htm and (if you are on Facebook) our “Finding a Doctor” group at https://www.facebook.com/groups/GPfightFindDr/. I hope this helps you!
I was diagnosed with gastroparesis and 2013 I don’t get dehydrated but I have a lot of problems eating gaining weight and keeping my weight if you believe speedy light would help me I would appreciate a free sample
Hi, Ms. Maria! I am so sorry you are struggling to keep your weight up. It is difficult sometimes, I know. SpeedyLite is actually only billed as an oral hydration solution and makes no claim to help with weight maintenance or gain. Oral hydration drinks can help some in our community who have issues with staying hydrated, though. If you would like to try this particular brand, I can give you a link to the site where you can request samples: http://www.speedlyte.com/faq/. Simply scroll to the bottom of the page. I must advise that you consult with your physician before beginning any oral hydration solution product. Hope this helps!
My observations are that Gastroparesis, a true DYSAUTONOMIA, results from thoracolumbar scoliosis and autonomic nervous system impingement; whereby scoliosis is functional and caused by sacroiliac joint disorder, secondary to sacroiliac joint subluxation; due to mechanical injury and/or Hypermobility Syndrome.
Mr. Badgley, thank you so much for sharing your thoughts! While I am no medical expert, it is true that digestive issues are quite commonly associated with dysautonomia. There are many potential causes of Gastroparesis. For a good discussion of causes and underlying conditions, please see the “Identifying the Cause of Gastroparesis” section of the following: http://gi.org/guideline/management-of-gastroparesis/.
I feel you. I had a lady walk up to me once and say “honey…you need to eat more.” It took every fiber in my body to not say “well, apparently you need to eat less.” WTF? It would never occur to anyone to walk up to a fat person and say “honey…you need to eat less.” Can you imagine? I did muster the courage to say “yeah…my chemo drugs have such a chip on their shoulders when it comes to food. Those little assholes!” The lady was shocked and walked away.
I, like you, feel guilt. I’m a single mom, and when I have projectile vomit, I run like hell to the bathroom, but sometimes I don’t make it. My 14 year old daughters are so strong…they always xomw running down to clean the mess and help me get myself clened up. I even shat my sheets one night after endless puking, and my poor daughter had to deal with that while I was cleaning myself in the shower. I’m so grateful for them, but I don’t think it’s fair to place that burden on them. What do people do who live alone and deal with this? I’m looking for solutions.
Thank you for your comments, Ms. Stephanie. I am sorry you are struggling, too. It is particularly rough for those who do not have spouses, partners, or caregivers of any sort. Some are able to employ home health care aides, but many truly are without help. It is a difficult situation — one that needs to change.
i guess they take care of themselves and don’t make their kids clean up after them
Hi, my sister-in-law has had GP for years, and her suffering, as well as the cluelessness, apathy, and even cruelty of the medical profession towards her suffering is enraging. As her concerned brother-in-law, I often do research online for her, as does my partner, who is her twin.
One question I have: Is the overwhelming majority of people with GP women, as it is with autoimmune disorders (which some female members of my own family have dealt with for years, often encountering the same unempathetic response from doctors)? It certainly seems so from both talking to my sister-in-law, and reading online GP posts.
If this is true, has there been any explanations as to why? Women suffer 90 percent of all autoimmune conditions, and I’ve never seen an adequate explanation of why this is the case either. Given that almost all autoimmune and GP sufferers are not 70 year olds or older, the gender discrepancy simply cannot be explained by “women live longer so they are more likely to get disease X”.
Thank you for your comment, James. Yes, though figures vary a bit, most indicate that 80% or more of those diagnosed with gastroparesis are female. Some theorize a hormonal link, but this has yet to be proven and probably merits further study.
I too SUFFER living with Gastroparisis. I am working myself out of one of the worst attacks I have ever experienced. I began bleeding today. I actually felt like hard sharp rocks were stuck in my belly and yes I thought that I was having a HEART attack. Every morning when I wake up I think, OH no another day to struggle through. Everyone tells me that I need to eat. I literally try to avoid the thought. Sorry everybody, I thought that I was up to this but I have to go. It seems like I am always saying I’m sorry. Take care!
Ms. DeeDee, I am so sorry you are struggling. I think sometimes people do not understand it is not quite as easy as simply choosing to eat, as that causes worsening of symptoms such as nausea, vomiting, and pain. I hope you can find a doctor who will work with you to develop a treatment plan which helps, and I hope your symptoms ease.
It’s sad to hear that you are going thru a very tough time. There is still a lot of ways to treat it. You have to rekindle your stomach fire. Try to check if you are low on stomach acid. If it is so try taking betaine hcl with pepsin. It would help with breaking down the proteins and help your body take up essential micro minerals and amino acids essential to re awaken your vagus nerves. You may have to take the medication for a long time as nerves take a long time to heal but hope that you will feel a lot better
I was glad to find this group. I have been having problems for several months now and thought it was just constipation. I have a feeling in my esophagus that feels like something is stuck there most of the time. There are times I have been 8-10 days without a BM, I am so miserable and when this occurs the feeling in my esophagus is worse and stays for days. Laxatives don’t work until several doses. I don’t have the nausea and vomiting, but afraid it will come. My stomach hurts a dull ache most of the time . I am a diabetic and have had uncontrollable BS and low potassium levels for years. Now wondering if it come from GP. As being newly diagnosed I feel like my family don’t understand and thinks I am just constipated. I had a endoscopy and colonoscopy yesterday and the Dr said my stomach is the size of a basketball. I am frustrated looking for answers of how to handle and what else to expect. Any feedback is welcome .
I am so sorry you are having a difficult time, Ms. Roberta. Some people have issues with multiple parts of their digestive tract (in addition to GP). I hope the endoscopy and colonoscopy give you some answers. I think proper diagnosis is key here.