August is Gastroparesis (GP) Awareness Month, and so I want to allow a friend who live with both Ehlers-Danlos and Gastroparesis to share a little about their lives with GP, and how it affects her individually. First I’ll give a little introduction about the condition and how it relates to EDS.

What is Gastroparesis?

Gastroparesis is literally translated as paralysis of the stomach, but is a functional GI disorder that occurs (for a variety of reasons) when the stomach (and often other regions of the GI tract) can no longer empty properly. Symptoms include: feeling full after eating small amounts of food, nausea, vomiting (especially undigested food), reflux, abdominal pain and bloating.

How does Gastroparesis relate to EDS?

Gastroparesis is considered to be a rare condition among the general public, but is likely underdiagnosed. It is more common among people with certain conditions including: Diabetes, Parkinson’s Disease, connective tissue disorders such as EDS and Dysautonomia/Autonomic Dysfunction (another comorbidity of EDS). In the case of EDS faulty collagen, structural abnormalities, and autonomic dysfunction are likely to be contributing factors.

Gastrointestinal complications of EDS are: common, potentially disabling, well documented in the existing literature, (and) underappreciated by clinicians. (Collins, 2014)

Hannah’s Story

My name is Hannah and I am an animator finishing my last quarter in college. I have been disabled most of my adult life. Alongside of GP, I have Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Idiopathic Intracranial Hypertension, and a few other things to add onto the list.

I have had stomach trouble since I was a baby. I had GERD and it would disrupt my sleep.  It my reflux didn’t get bad enough to need medicine until I was in college in 2014 and I was under more stress and eating a different diet than normal.  I was living with some family friends and they ate more acidic foods than I was used to.  2015 is when I first started having my GP symptoms and I eventually had to quit my job.  For a while my GP went into remission and a stomach virus in 2017 kicked it back into full gear.  It took until this year, 2017 for me to be diagnosed.  This came 5 years after my EDS diagnosis.

When I was diagnosed, I had stomach pain both in general and upon eating/drinking.  This comes with early satiety in the meal.  My stomach would distend as well.  I get awful belching almost all the time, especially when there is anything in my stomach.  One of the earliest symptoms I had was the reflux and regurgitation.

I am blessed to be one of the few GPers to have not had the experience to have an inpatient stay. My GP is moderate-severe, but it has not gotten bad enough to where my GI doctor cannot manage it from the office.

Currently, my nutrition comes from a combination of solid foods, ensure/boost, and some blended foods.  I mainly eat soft foods and very small portions.  What I can get in a day equals to roughly 500 calories.  I will be getting a G tube this month to change my situation so that my body can receive the nutrition it needs.

The only medications I take for GP are omeprozol to manage the reflux and regurgitation and I also have a Port-a-Cath to do daily infusions of saline to keep myself hydrated since I cannot take in enough fluids orally.  So far, I notice a difference in my POTS management since getting my fluids.

There are many facets to the difficulties of being so sick.  I can’t eat what I used to, and the food that used to bring me great joy now just brings me pain.  Your body goes into survival mode and wants to eat as much as possible because it doesn’t know when its next meal is, and you can’t control any of this and you end up feeling so guilty and shameful about it all.  It’s not an instinct to suppress your hunger like this. With EDS, I’m used to there being ups and downs to my illness, but with GP, it seems to be so constant and relentless.

I want people to know that it is not ok to make fun of someone because of their medical equipment, disability, or just because they look thin, fat, or what have you.  Nothing is more hurtful that hearing others judgmentally say, “you must be anorexic” when in all actuality, it is a very real medical condition we cannot control.  It’s horrible to hear friends say that about others when you are sitting there with them and you have to wonder, what the heck do they say about me then?  Just a bit of compassion needs to be used, not only with those with GP, but those with disabilities. Nothing is worse than hateful statements that come from friends, family members, and strangers.

I’ve learned that it is completely and totally ok to say no to someone when they want you to do something or they are making plans. You make plans based on how your body feels, not based on what they want to do.

Sources:

Collins, H. A., MD. (2014, September). Gastrointestinal Complications of Ehlers-Danlos Syndrome. In EDNF Physicians Conference . Retrieved August 19, 2017, from https://ehlers-danlos.com/2014-physicians-conference/Collins.pdf

 

G-PACT. (2015). Gastroparesis. Retrieved August 19, 2017, from https://www.g-pact.org/gastroparesis

National Organization for Rare Disorders (NORD). (2012). Gastroparesis. Retrieved August 19, 2017, from https://rarediseases.org/rare-diseases/gastroparesis/