I have this thing, it’s called gastroparesis. When I was first diagnosed I was hopeful. I set my sights on the road to my inevitable recovery; because “I am only 30ish, it’s not like I’m going to die or anything ! No, I am going to beat this, nay not I, we were going to beat it. You see 8 years ago when I was diagnosed, I had a tribe. Aaahhh yes, my tribe headed up by the linked arms and the strong footfalls of my parents, my husband, my ex husband and my children.
Unfortunately what no one tells you is this illness doesn’t just affect you only physiologically, but it shakes the very foundation upon which, if you like me, you thought was indestructible. No, this illness takes away your ability to go out to dance at the club or bar……because, well, no energy. It takes away your ability to take ridiculously named, but awesome looking and tasting shots……because, ugh, too nauseous. You have to cancel plans at the last minute… ..well, I’m just in too much pain.
So as I wigggled out of my old super social life into my new less than one; I noticed something, I was suddenly able to feel the wind at my back more freely, I whipped my head around to query my tribe. It was then that I realized several people had fallen away; not just for a pit stop to grab a water and return or sit briefly upon a rock to catch their breath, no they had fallen away and not returned. I blamed myself. Well if you hadn’t missed that birthday party or our the big labor day shindig, then so in so and you know who would still be here. You see this illness tries its best to wrap itself around your body and your life and squeeze every part of your status quo into hospitals, pills, countless Doctors, surgeons, specialists, and diagnostic testing. This illness shows you how humans truly behave, especially the ones in your tribe.
I am a 41 year old wife and mother of 3. I was diagnosed with Gastroparesis 6 years ago. I have had 27 surgeries due to my illness. I have been on Social Security Disability for 4 years. I was tube fed for 3 years and have recently just had to have an NJ tube inserted . I am fighting for my life while being treated like a guinea pig and yet there is no hope around this disease. While I was tube fed I had to have 15 surgeries to either change feeding tubes or because of complications from the tubes themselves. I honestly felt like the feeding tubes were going to kill me faster than my actual disease. I made the choice to have my feeding tubes removed. Now social security is saying I am basically cured because I made the choice to have the tubes removed. I am on the verge of loosing my disability benefits and my medicare because of this and yet I just had to have a NJ tube inserted because I was unable to maintain weight and nutrition after my last surgery in May which replaced my 3rd Gastric pacemaker. I cannot work and I am now tube fed again. Life is traumatic and hard. I now have a home health nurse and dietitian along with 6 other specialists and yet I am nowhere near cured or healthy. Depression has overwhelmed my mind and body as I have tried to navigate through this disease with what seems like no help or support from my doctors or the government. Please help me!
Gastroparesis means “paralysis of the stomach.” It is a digestive motility disorder in which the stomach muscles, controlled by the Vagus nerve, fail to contract and move food from the stomach into the intestines at the proper rate. Under normal conditions, the stomach stores food only long enough for it to be ground down into small pieces by contracting stomach muscles in preparation for further digestion in the intestines. This process is slowed in those with gastroparesis, resulting in food being “stored” in the stomach for an abnormally long period of time.
What are the symptoms of gastroparesis?
Gastroparesis is marked by one or more of these symptoms:
Nausea
Vomiting
Bloating/Distension
Early Satiety
Stomach/Abdominal pain
Gerd/Acid Reflux
Weight Fluctuations (Loss/Gain)
What are the complications which can result from gastroparesis?
Complications of gastroparesis may include:
Erratic Blood Sugars
Chronic fatigue
Esophageal Damage
Bezoars/Intestinal Tract Blockages
Dehydration
Malnutrition
How is gastroparesis diagnosed?
Gastroparesis is most commonly diagnosed by the Gastric Emptying Study (GES), a procedure in which radioactive material (food) is traced by a scanner as it moves through one’s digestive tract. This test allows one’s doctor to track the rate at which food travels from the stomach to the small intestine. Other methods of diagnosis include upper endoscopy, barium x-rays, gastric manometry, and the wireless motility capsule (Smart Pill) which, when swallowed, transmits data regarding the rate of passage through the digestive tract.
Though the Gastric Emptying Study is still considered the “gold standard” of diagnosis, there are issues and limitations associated with this study, as it is simply a snapshot of a moment in time. Test results can vary widely over time , and so, it is not uncommon, for example, for one test to show severe delay and another follow-up study to show mild delay or even normal emptying rates. Consuming the recommended standardized meal, tracking emptying rates for 4 hours (rather than the 90-minute or 2-hour tests offered by some facilities), testing for both a delay in solids and in liquids, and stopping all medications which could interfere with the results (as directed by your physician) can help to produce the most accurate emptying measures.
Diagnosis can be difficult even under the best of circumstances. Some patients find they experience “flares,” or periods of severe symptoms, followed by relatively symptom-free days, and, so, the timing of doctor visits and testing might be a factor in obtaining an accurate diagnosis. And to complicate the situation further, symptom severity does not necessarily correlate with the rate of emptying, resulting in some patients with severely delayed emptying having only mild symptoms and others with minor delays in emptying experiencing quite severe symptoms. In addition, symptoms often overlap with or mimic other conditions (such as functional dyspepsia or IBS). Diagnosis should, then, be based on a number of considerations, including test results, patient symptoms and history, and the elimination of other possible symptom causes.
What are the causes of gastroparesis?
Common causes of gastroparesis include:
Idiopathic (no known or easily identifiable cause)
Diabetes
Vagus Nerve Damage
Connective Tissue Disorders
Autoimmune Disorders
Neuromuscular Disorders
Certain Types of Cancer/Cancer Treatments
Viruses
Some Medications
Diabetes is the most common known cause of gastroparesis, accounting for about one-third of the cases. Other known causes include neurologic and connective tissue disorders, surgical complications, medications, and direct damage to the Vagus nerve. Most cases of gastroparesis, however, are labeled “idiopathic,” meaning there is no known or easily identifiable cause.
What are the common treatments for gastroparesis?
There are variations in symptoms and levels of severity of gastroparesis, and individuals respond differently to the available treatment approaches. In general, patients struggle to maintain nutrition levels and are at risk of malnutrition and/or dehydration due to their inability to ingest and absorb nutrients. There is no scientifically-known cure for gastroparesis, and, so, treatments tend to focus on symptom control and may gradually progress to greater levels of intervention, based on how well or poorly one responds to each step in the treatment plan.
Treatments may include:
Dietary Changes
Medications
Alternative Therapies
Tube Feedings or TPN
Gastric Stimulator and/or Other Surgeries
The basic GP diet calls for small, frequent, low-fat, low-fiber, high-protein foods and liquids (at tolerable levels) which are easier to digest. Many diet plans call for a 3-step process, beginning with a liquid-only diet and then progressing to soft-foods (low-residue, low-fat), and eventually, a maintenance diet (which adds just a bit more fat as well as some well-cooked, easy to chew foods).
In reality, many find the basic diet plan difficult to follow, as tolerances vary, and it must be tailored to fit individual needs. In short, what works for one might not work for another, so it is largely a process of trial and error. To complicate this further, many of us find that our food tolerances can change from day-to-day and over time. So, what works for us one day might not work the next.
Some find they get “stuck” on one “step” in the diet or that they move up and down the steps rather than steadily progressing. Others find that, though they follow the plan precisely, they have little to no tolerance of the recommended foods and liquids and cannot maintain adequate hydration and nutrition levels.
When this is the case, medications such as prokinetics and antiemetics may be helpful. But some must also resort to methods which provide supplemental nutrition, such as feeding tubes and TPN (intravenous feeding).
We recommend keeping a food journal which notes your daily intake and any reactions, intolerances, or worsening symptoms you experience. This might assist you in finding patterns over time. Further, we suggest “testing the waters” by slowly and gradually adding one or two liquids/foods, in small amounts. Be mindful of the guidelines and note what works for others, but do not be surprised if your tolerances differ from those of others, and be willing to tailor the diet plan to suit your individual needs. You must do what works best for you!
If you find you are not maintaining adequate hydration and nutrition levels, consider asking your doctor for a referral to a dietitian or speak with your provider about the possibility of other methods of supplementation.
According to the National Institutes of Health (NIH), an estimated 5 million people or more live with gastroparesis; yet, this illness is still little-known to the public and often misunderstood by healthcare professionals who impact our care. This lack of knowledge can lead to under-diagnosis and/or delayed diagnosis and treatment.
Is gastroparesis progressive?
Gastroparesis can be but is not necessarily progressive. Some patients improve over time, while others find their condition worsens. Some note little to no change in their symptoms or severity level over time. Many patients experience fluctuations between (sometimes lengthy) symptom-free, remission-like periods and symptom-heavy flares.
Progression depends largely on the cause and on how well one responds to dietary changes and available treatments. In some cases, treating the underlying cause (such as Diabetes), can lead to significant symptom improvement. In other cases (such as post-viral gastroparesis or gastroparesis brought on by medications), the scientific literature indicates the condition can (but not necessarily will) resolve itself over time.
Regardless of severity level, cause, or pattern, there is no scientifically-known cure for gastroparesis and no one treatment which benefits all. Progression and effectiveness of treatments are highly individualized.
Is there help for me?
There are many sources of help to which you might turn. Our “Resources” section includes a list of our various support groups, blogs, social media links, and other credible sources of information which will assist you in this regard. In addition, we are always happy to hear from you and will gladly answer your questions and/or assist you in finding additional resources. You can reach us through the contact form on the website or via e-mail at info@curegp.org.
*Please note that any recommendations offered are opinion only and cannot substitute for professional medical advice. Please consult your medical team for proper individualized care.
In February 2014, I spent a week in the hospital and was diagnosed with gastroparesis, and since that day, my life has changed in ways I could not have imagined – overnight. One day, I was eating at buffets, and the next day, I was unable to tolerate all foods and liquids. I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach), diagnosed, and sent home with only a brief explanation of my illness. For the next few weeks, I was on a liquids-only diet and told that I would gradually work my way up to soft foods and solids. Unfortunately, nothing like that has occurred. Today, I am able to eat some soft foods, in tiny amounts, but it is clear to me that I will never again be able to eat “normal” foods in “normal” amounts.
After first being diagnosed, I told myself I would not let this disease define or control me – it simply WOULD NOT be the center of my life. But with the passing of time, 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 my family; but I cannot have it. I look in the mirror and I barely recognize the skeleton staring back at me. I try to eat even small amounts of food, and I am in agony. I am weak and fatigued to levels I did not think were possible. Some mornings, I do not think I have enough energy to get out of bed. I can barely concentrate and function enough to do everyday tasks. And almost every night, my husband must help me up the stairs to bed because he is afraid I might fall down those stairs. My 15-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out. She has been so frightened at times that she has asked me to get “Life-Alert.”
I grieve over the fact that I can no longer travel or get out of the house for much of anything – over missing family events, my daughter’s activities, picnics, concerts, and other such functions. I worry that I will not get to see all the significant milestones to come. I am not on the verge of death today (at least I do not think so), but when I look in the mirror, I realize that people like this do not have long life spans, and it bothers me. I worry about what will happen to my family when I am gone. I fear my daughter’s reaction to my death and the consequences that might result from her growing up without a mother. I want to be there for her when she is sick, scared, or needs advice. I want to see her turn “Sweet Sixteen.” I want to hear about her first kiss. I want to see her grow up, graduate, get married, and have children. I want to know that she has a good career and a loving family. I cannot bear thinking about the pain my death will cause my husband, and I am concerned that he might not be able to function when this occurs. I want to grow old with him. Facing the strong possibility that none of these things will occur is anguishing.
I get frustrated because people do not understand how my life is affected by GP. Just seeing me on the street, you would likely not realize I am sick. I do not look all that sick. People frequently ask me if I am better now, as if I’m just going to be healed one day. I cannot seem to convince them that I am never going to be “better,” not in the sense they mean. I am told I “just need to eat,” or that if I would try yogurt, I would heal. My own doctor accused me of being anorexic and advised my husband to “watch me” because she didn’t understand the nature of my disease. And though I know people mean well, it still bothers me.
I am angry because I am a control freak, and I do not like being a slave to this disease. I do not like being “helped” with everyday tasks and always having to rely on others for aid. I have screamed at, smacked, and pushed my husband away for simply trying to assist me more times than I care to remember. I have thrown things (including food) across the room in fits of anger. I have intentionally gone without eating – even though I know I should not – just to “show” this disease who is in control. But mostly, I am angry because I do everything I am supposed to do – eat the right foods, exercise, and ingest the known medications – and none of it matters. 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 does not – and I am thankful for that. I am blessed to have even one more day with my family. I think about others who have this disease who are much worse than I am. I know many, many people who have sought treatment for dehydration, pain, and malnutrition, and who have had to resort to feeding tubes or ports for nutrition. I sometimes look at them and think that this will surely be my future, too, and it scares me.
I am dying a slow death, a death by starvation. I am not getting better no matter what I do. I am dying, and there is no help, no cure, few treatment options, and little concern about it from the media, the public, the policymakers, the doctors, and the researchers. I am dying, and no one wants to hear it, or face it, or stop it from happening.
Most people have never heard of gastroparesis, and the ones who have, don’t fully understand it or decide to ignore it – dismiss it as if it is a stomachache. I am not certain that anyone who has not experienced this disease personally can ever really grasp the true horrors of it, but if these decision-makers, these people who shape my life could spend a week in my support groups, maybe they would see the never-ending torture we endure day in and day out. Perhaps then they would see what I see: tremendous physical suffering; endless doctor visits, emergency room trips, surgeries, and procedures; isolation, loneliness, depression, and resignation; financial ruin.
I don’t understand why I have this disease, why all the others in my groups have it, but what I do understand is that it is important for me to share my experiences and try to find help for us. We are struggling. We are dying. We are STARVING FOR HELP. That’s not just a slogan. That is our reality. Does anyone out there hear us? Does anyone out there care
On 4/17/2015, I went in for a routine colonoscopy, the Md unknowingly ruptured my spleen. I was rushed to the ER where my spleen was removed. Long story short it took about a 6 months for the incision to heal. I could only drink liquids and went from 116 lbs to 92 lbs and remained there for over a yr. I didn’t know what was wrong with me because I became full on a small amount of food and was incredibly bloated. My chest was tight and food wouldn’t go down.
I found a new GI and we proceeded to do numerous tests beginning with Sibo, then I was given an endoscopy with Botox which alleviated the tightness in my chest. Then I had a cat scan done, gastric emptying test then manometry. At first they thought I had dyspepsia then achalashia then finally I was diagnosed Gastroparesis in Aug of 2017. My GI really wasn’t versed on the condition and said I could eat broccoli and cheese!!! But he did recommend Domperidone which really helped with the nausea and appetite.
I finally went to a nutritionist who was very knowledgeable and helpful. I’m now 109lbs. It’s been an eye opening experience! I was so angry that this happened to me! I tried to sue to no avail. I’m just now starting the process of accepting that sometimes bad things happen to good people. ( I’m in therapy) I used to cry several times a day but I’m down to once every other day or two.
I’ve basically had to be my own advocate because there is very little knowledge or awareness of this condition. We need cures! I personally believe it will take stem cell to heal the Vagus nerve and I’m hoping more funding will go into research. We need awareness. I don’t think people are aware that abdominal surgeries can lead to Gastroparesis or are aware of how devastating it is. Most people just think its like IBS. We all have a story and this is mine. It changed my entire life in an instant.
