Share your experience of living with gastroparesis – it can be therapeutic for you as well as others who suffer.
Here is a sampling of stories by people affected with gastroparesis. Or view more stories and share your own.
I was told the end of October, beginning of November that I have gastroparesis. The doctors do not have any idea how I got this. I do not have diabetes, IBS or anything else that could cause this. I also have never vomited since I was diagnosed. I have been nauseous and have weight loss. I also have stomach pain daily. The pain can be so bad sometimes that it wakes me up from sleep... Find the rest of Phyllis's story and other stories on this IFFGD community page.
Hello, my name is Cathryn. I am 17 years old. I have gastroparesis and have had it for a long time now. My case is very severe and I also have chronic GERD too. Yet, I am not diabetic oor borderline. Gastroparesis has caused many delays and harsh outcomes in my young life. They do not know why I have this, I overall try to be positive about it, although, it is extremely hard... Find the rest of Cathryn's story and other stories on this IFFGD community page.
I am a 36 year old female who was diagnosed with Gastroparesis two years ago while completing my final year of graduate school while working full time at a Fortune 500 company reporting to a Chief Executive. During this time period, I experienced my body (and mind) completely collapsing. I was unable to eat and when I did it I became incredibly ill. There were also periods of days and weeks were I could barely get out of bed. The stomach cramping and brain fog were terrible. I’ve never experienced anything like it... Find the rest of Geri's story and other stories on this IFFGD community page.
My tummy story started in the spring of 2009. I was having some issues with nausea and indigestion that was initially brushed off as “probably an ulcer.” From there I began to have chest pain/pressure, heartburn, and severe nausea. Nothing I did seemed to have much of an effect. Over a 6 month period, I would return to my doctor 3 times with these complaints. I was given a variety of diagnoses, from pleurisy to GERD, but none of the treatments helped. I developed pain in my side and back, and started to notice feeling full quickly no matter what I ate. Previously a REAL foodie, and a little overweight at 150 pounds, my diet dwindled to mainly cereal and toast... Find the rest of Hollie's story and other stories on this IFFGD community page.
I was seen by multiple physicians and was given many different anti-sickness medications and also had to undergo many investigations including: CT, MRI, Endoscopies, Ultrasound Scans and Gastric emptying scans. Eventually I received the diagnosis of a disease called Gastroparesis or also known as delayed emptying of the stomach. My stomach had now become paralyzed and I was not able to digest solid food. I have not really eaten any solid food since January of this year. When I do eat, I throw it up. I have been living on Jell-O, puddings and ice cream; which are the only types of food that seem to stay down.
I began treatment by a local GI physician who prescribed multiple medications to try and treat the disease and control the symptoms. Eventually after failure and no relief he needed to refer me to a more specific GI specialist that deals specifically with gastroparesis. During one of my hospitalizations in February 2011 I was transferred from Reading Hospital and Medical Center to Temple University Hospital. After many trials of other medications to treat the disease I still was not making progress, all treatments we tried had failed. The time had come to move forward with a more aggressive approach. It was then we discussed the possible surgical options and we decided on the placement of a gastric stimulator. In August of 2011 the doctor surgically implanted a gastric stimulator. Unfortunately I still am not having relief and making no progress. I am still unable to keep down food and now having problems keeping down the Jell-O's and puddings. I also, now have problems with severe abdominal distention and right upper quadrant pain as soon as I try to eat anything. The doctor has adjusted the setting on the stimulator multiple times.
I am desperate to find a physician that has treatment options for my gastroparesis and can also handle me as a patient who already has a gastric stimulator in place. I am a Registered Nurse. I have done plenty of homework calling and researching many hospitals in Pennsylvania which all seem to have a rare few physicians who do treat gastroparesis but do not deal with the gastric stimulator.
I am hoping you would have some possible answers or options for me. My suffering began fall of last year causing me to vomit excessive amounts in a day. This resulted in some of my hair falling out and weight loss.
I am extremely desperate to find a very qualified physician that can treat my disease and possibly get me back to health. I am missing out on so much of my life let alone my 9 year old daughters’ life, since I am always sick throwing up which causes much exhaustion not to mention all the pain that goes along with it all. I am not able to participate in many family activities. Thank you for reading my story.
– Name withheld by request
I have been suffering for the last month with gastroparesis. I have never heard of this condition until I was told that I had it. My story starts last summer when I told my primary that I was getting what was likened to as severe hunger pains. They did not stop me from eating or living my life. I was told to up my GERD medication which I did. Then I went to my gastroenterologist complaining of the same pain. Now it seemed to be getting more frequent. I was still able to eat. I am a 10 year type 2 diabetic. I admit this last summer I did not keep my numbers where they should of been.
Well in early October my doctor did a Gastric emptying test which came out normal. This was followed up by a colonoscopy which also came out normal. Then I woke up on Oct 19 sick as a dog vomiting (and I never vomit) I went to the ER where they were convinced I had a blockage. They kept me on IV for 3 days, did a CAT scan and stomach x-rays and sent me home, where I continued to vomit every 2 days. They then did a endoscopy and saw that I had food in my stomach even though I fasted for 10 hours. I have since be in the ER again to get fluids. I am now going to a local university hospital seeing a specialist who told me there is no cure. I just want the pain and the vomiting to stop. I have lost 26 pounds in a month so I am very weak.
– Name withheld by request
Mine seems to be unusual as I seem to have symptoms that are not mentioned with the disease gastroparesis.
I started to have uncontrollable diarrhea at about the age of 25. It ended me in the hospital where it was said to be a nervous stomach. I was going thru a lot in my life at the time so I accepted it, Over the years it would be good and then I again would have a long episode of it, sometimes lasting for many hours. It would come on me suddenly and my kids remember me being sick and unable to go places with them - I was a single parent with 2 kids.
Finally a doctor heard me and they did a test - don’t remember them telling me what I had - and put me on metoclopramide. NO explanation or anything. In part I blame myself as I also did not ask questions. The bottle said no more than 90 days, but no one took me off and it seemed to be helping.
I moved back to my home town after I retired and of course had to get a new Dr, He also said nothing about the use of metoclopramide. So I continued to take it. By this time I had been diagnosed with type 2 diabetes. I also had been diagnosed with nerve damage in my feet, before the diagnose of diabetes. After about 2 years I had to get a new family doctor, and kept the first one as my diabetes doctor, she also did not ask about the metoclopramide.
After being on it for about 12 years I started to have uncontrollable movement symptoms. I later learned that these side-effects are associated with metoclopramide. Even though I no longer take the drug, the side-effects have persisted.
I most likely will have this forever, I have not given up - have been looking up all my drugs, my illness, and anything dealing with this.
I feel my doctors let me down, not explaining anything, or questioning me on the length of any drug, but I too am to blame for not being more involved with my health. I am now.
– Name withheld by request
[Editor’s Note: We place a lot of trust in our doctors, but that does not mean we should not ask questions. Assume that all drugs – including over-the-counter and herbal supplements – have potential side-effects. Ask your doctor what they might be and what can be done to reduce risk. Here is an article from IFFGD to help guide you: Avoiding Drug Adverse Effects.]
Like many of you, I have struggled with health problems for the past few years – but have struggled for the longest in just getting a diagnosis. During 2005, I began to feel terrible, and had unrelenting intense epigastric pain after eating. My internist ran some tests, and discovered that my gallbladder was working at 7%. Since it was not really functioning, it was recommended that I have it removed. I did, and felt better for a while. The symptoms returned about a month later, but were a lot worse. I was referred to another specialist 2 hours away, and was diagnosed with Sphincter of Oddi dysfunction and had a biliary sphincterotomy. However, I did not have any significant improvement after the surgery. My doctor at the tertiary facility pretty much gave up on me and finally referred me back to my internist and local GI doctor.
At that time, I was so sick that I could only eat soup and baby food – and even that was painful to eat. No one could figure out what was wrong. In 2007, a local GI doctor referred me to a nationally renowned facility, and I received a call from the facility stating that a doctor had reviewed my case and thought there was nothing they could do for me! I eventually got an appointment with another facility 14 hours away. I underwent a few tests, and was diagnosed with moderate idiopathic gastroparesis. The GI fellow that broke the news to me prescribed Reglan, told me to eat a balanced diet, read about the disease on the internet, and figure out what to eat by surfing the web. He then left the room, and my husband and I got into the car and drove 14 hours back home. Still frustrated, because I thought something else may be wrong, I drove back 14 hours for a follow-up appointment. I was told by the attending physician there that maybe I pulled a muscle, maybe I was just depressed, or just maybe I wanted attention. That made me angry. I thought at one point that maybe I was losing my mind, but I had physical symptoms of pain, vomiting, and nausea – and there is no way I could be making up all of that!
I finally did my own research and found a list of the top motility clinics in the US. I decided that I wanted to get to the bottom of this… I was tired of the run around… I wanted some real answers from doctors that deal with these problems daily. I finally made a phone call to one of the most comprehensive motility clinics in the US and got an appointment rather quickly. My husband and I traveled once again, hopeful for answers. It was determined that I have severe reflux (even though I don’t have heartburn or an erosive esophagus) as well as gastroparesis. All of the doctors that I had seen before did not really go into detail about gastroparesis – only that I should not be hurting like I do. They blew off my symptoms and thought I should feel normal. Their attitude towards this disease made me feel like I should be normal and eat whatever I want, etc… This has caused me to really “be in denial” that anything significant is wrong with me, which actually made my symptoms worse. This “new” doctor actually told me that my problem was pretty moderate – and there was a problem! He did not sweep my problems under the rug or try to downplay them. We are actively trying to manage this situation. He actually gave me some dietary advice to follow. I have had consultations with a dietician that knows about gastroparesis and how to manage it. At least now I feel like I have a toolbox of solutions to my problem. It took me 5 years to get there, but I feel like I have finally made it!
For those of you out there who have been rejected by the “best” and who have lost all hope for help… please do not give up. I am confident there are answers out there for you. It may take some time and effort to find all the answers, but you will find them. It may take a long time to find a doctor that understands functional GI disorders, but he or she is out there, and has dedicated his or her life to help you. My prayer for you is to not become discouraged in your journey towards seeking help, and that you may find wellness and healing.
[Editor’s Note: IFFGD maintains a resource guide of physicians who have told us of their interest in seeing and treating patients with functional GI and motility disorders. You can use our Care locator to locate a physician. Be sure to let us know your symptoms or diagnosis, and your city and state.]
– Name withheld by request
I felt so touched by reading Kristen's story that I can't stop crying. I did not think there was another person feeling the same way I do.
I have been diagnosed with gastroparesis, and I am also lactose intolerant. My main problem, besides nausea when I eat, is that I feel so bloated that I tend to isolate myself from others. This is definitely affecting my marriage. I feel sick, uncomfortable, unwanted and hopeless. The medication I'm taking is not doing anything for me, and the other options are either not yet approved to be sold in US or have too many side effects.
The only thing that keeps me going is that I want to have beautiful kids with my loving husband one day. I love my hubby so much for understanding me and caring about me. Some day I will find the medication that will make me feel better.
– Name withheld by request