Pact Blog writer Nancy busts some myths about gastroparesis, and provides us with some information and resources.
Being diagnosed with Gastroparesis (GP) can be overwhelming. Facebook and on-line chat groups for GP suffers are a great place to read about personal experiences and ask questions, but there’s a lot of information and not all of it is accurate. Rather than only relying on the information you read on social media sites, make sure that you go to reliable, credible sources. Do your own research.
Myth #1: GP can be cured. Experts at Mayo, Cleveland Clinic, Johns Hopkins, and Webmd.com agree – there is no cure for GP. GP can be managed through diet, medication, surgical treatment, or gastric neurostimulator. Often patients can see improvement in their symptoms, but there is no cure.
There are people who take advantage of people who are have chronic illnesses. They usually try to sell you a product or service. However, if a specific product provides you relief from symptoms, then by all means go for it. GP isn’t a one size fits all disease; what works for you, might not work for others. Just be skeptical of claims of a cure.
Myth #2: GP always gets worse. GP is not considered a progressive disease. Not everyone ends up with a feeding tube. Some GP patients are able to eat normally. The underlying cause of and severity of GP symptoms have more to do with needing a feeding tube than not.
In my case, my GP symptoms have improved since my diagnosis six years ago. My first Gastric Emptying Study (GES), showed I had severe GP. A subsequent GES, showed a twenty-one percent improvement (after transpyloric stent procedure), and latest GES showed continued improvement in emptying. However, I still have symptoms and flare-ups and am on medication and diet modification to help manage the disease.
Myth #3: You can eat anything you want. There are people with GP, who are able to consume a side variety of food without experiencing any symptoms. For the vast majority of GP patients, they must stay on a GP friendly diet to aid in symptom management. I always tell people, sure I can eat that, but them I’ll get sick and be miserable. Why would I do that knowing the outcome.
Myth #4: I can’t celebrate holidays, go out to dinner or parties. Although being around food is a challenge, having GP should not be the reason you don’t celebrate holidays or go out to dinner. There are many GP friendly recipes available so that you can enjoy holidays with out becoming ill. G-PACT has two GP-friendly cookbooks available – The Gastroparesis Gourmet and the Tender Tummy Cookbook. Living Well With Gastroparesis author Crystal Zaborowski Saltrelli, a certified health counselor and GP patient, has authored several books that contain recipes.
If you’re invited out to a restaurant, review the menu ahead of time to see if there is food that you can eat. Call the restaurant and ask if they are able to make something specific for you. If you are unable to eat the food being served at an event, bring your own food.
Myth #5: I can’t work because of my GP. There may be positions and careers that may not be appropriate for those suffering from chronic diseases like GP. There are lots of things to consider, including are you able to perform your job when your condition flares-up; do you have time dependent reports that would be impacted if you are unable to perform your work; and if you reduce you working hours, are you eligible for the same level of health and dental benefits? Be aware of the trade-offs between your job/career and managing your illness.
However, there are companies where that permit employees to work from home. To investigate work from home opportunities, refer to the following sites: Indeed, Career Builders, These Companies Have Remote Jobs That May Be Great for People With Chronic Illnesses or Disabilities, or Top 12 Jobs You Can Do From Home.
Myth#6: GP is hereditary. GP does not have a heredity component. However, autoimmune diseases like diabetes, scleroderma, and Ehlers–Danlos syndrome, may run in families. The underlying cause of GP may be hereditary, but not GP itself. GP does seem to run in families, but more than likely the underlying cause is an autoimmune disease.
Be sure to do your own research on GP and not rely solely on social media. Social media sites are full of opinions and personal experiences, but remember to check and validate information that you read on the internet.