Almost 8 years ago a woman (I will call her XD) made an appointment to see me. I had recently opened an Outpatient Nutrition Counseling Center based in an area Community Hospital. As expected, business was somewhat slow and that was perfect for me as I was just getting the place on its feet. XD had been given a diagnosis many healthcare providers, including myself were not very familiar with treating. The interesting piece is, she completely expected me to not be familiar with it because she had already seen several Physicians and another dietitian for the previous year or so in search of trying to figure out what exactly what's going on in her body.
XD was frustrated by her medical condition but, by the grace of God, she also realized that what she was dealing with was not well understood by very many providers. She patiently proposed to me that if I would be willing to do the research to help her with her nutrition, she would be a good student and client. I do not like not having the answers particularly, in the field of nutrition so I was eager for the opportunity to learn how to counsel her through this medical condition.
Gastroparesis (GP) is defined very literally by what the word implies: a paralyzed stomach. It occurs in many people as a consequence from another disease, often diabetes. Honestly, most of the people I counsel for gastroparesis do not have diabetes. Numerous people struggle with stomach pains and dysmotility problems that are chalked up to IBS, Crohn’s, food allergies, GERD (reflux) or even anxiety. Many young girls that I have since counseled have been labeled as having an eating disorder or medication seeking. Doctors refer them to me for one diagnosis and I send them back for further testing and finally learn that indeed, it’s not “all in their head”.
Before I go on, I should define dysmotility. Our digestive tract moves it’s contents involuntarily by a series of muscle chain reactions. This action is called peristalsis. The muscles that line our GI tract beginning with swallowing, contract and relax stimulating the next set of muscles to do the same all through the digestive system. Sometimes the messages get mixed up or go the wrong direction causing all kinds of pain, discomfort, bloating and, what I refer to as, rapid evacuation (i.e. vomiting or diarrhea). This website has an excellent explanation.
I mention this because in some cases, what begins as GP may lead to further issues from the top to the bottom. GP is ultimately a neurological problem but neurologists rarely treat it. Gastroenterologist and GI Surgeons are more often treating and managing GP.
Now many years later, with the encouragement and patience of XD and many others, I refer to myself as an expert in motility problems. I help a wide variety of people with nutrition-related concerns but, I seem to have an understanding of GP that has allowed me to help a number of people with a great amount of incite. It’s difficult for me to write these sentences because, I am not one to boast or brag. I am not convinced that I actually have any secret knowledge of this disease and I do not suffer from it personally. I believe that I came to be good at GP for 3 specific reasons:
Someone believed in me
No one else would see these patients
I listen to my clients
At first, I met with a couple of GI Docs and interviewed them on aspects of nutrition-related care, treatments and medications. I found there was another area expert whom had written extensively on the topic so, I read her published findings along with diving into as much available research as I could find. I will admit, I muddled through a few patients before gaining the confidence and understanding that now have for this disorder.
After a few years, I learned that patients were sharing their progress with their doctors and I became “the nutritionist” for GP and dysmotility for a few docs in my area. I was humbled and excited to learn that the steps I had been using to help my patients were working more often than not!
I also learned from seeing these specific clients that there was so little in the way of support for them. It felt to me like this disease that all the literature kept calling “rare” was not so uncommon. At first, I dismissed my own thoughts that went something like, “wow, there are a bunch of people out there with GP” because I still see in the research today that GP is considered rare. However, it has been difficult to estimate the number of people suffering from GP because it associated with both idiopathic causes and diabetes. Some research states as much as 4% of the population have some form of GP, in comparison Crohn's affects 1% of the population. Others limit quoting numbers to only those with diabetes which I from what I can see, range from 10 - 60% of people with diabetes. All I know is, in my experience there seems to more people out there with GP and dysmotility problems than research suggests.
A few years ago, I headed up a small local support group so my clients and others could see they were not alone. I also met an amazing and motivated individual Mary, who was out struggling with GP and on the same mission. We teamed up and now offer support in-person in our area and over the phone for anyone. She has really spearheaded the group this past year. Her personal experience and knowledge is beyond valuable to the GP community. You can check out The Greater Richmond GI Support website: HERE.
What does one DO when they are told their stomach doesn’t empty normally? I would suggest they first seek out a Registered Dietitian that will listen to them and help them navigate their unique set of symptoms. They should also find a specialist with experience treating people with GP. Meanwhile, my first piece of advice is always the same, “Listen To Your Body”. GP is personal. Many people will have similar pain and symptoms however, trigger foods, ideal time of day to eat, length of time symptoms persist, degree of disability and other details are personal for most patients. There will be an extended period of time full of trial and error related to medications and nutrition.
The toughest part of this whole ordeal is GP is rarely known to have a cure. Occasionally, GP will be transient such as being the result of a medication side effect or in the case of children, they “grow out of it” or for those that have it as a result of diabetes, symptoms occur mostly when blood sugar is too high. Symptoms might be managed well with diet and/or medications for a period of time or forever. The only thing I tell my clients to count on is that GP is unpredictable.
For some reason, I have found a passion for this frustrating disease. My clients can count on me to keep working as hard as they will to find their new normal.