A Wife and Mom living with Gastroparesis

I am a wife and  mom living gastroparesis. If you looked at me, most days, you would never guess I am sick, but I am. I try not to talk about it because I am not my illness. There are days when it is discouraging and I feel like it is the end of the world, but there are also good days. I am a woman with hope, dreams, and most importantly faith. I know that with God I will make it though the tough times.

Part of my Support System and I

When I first started showing symptoms I was sick as a dog. I had all the symptoms of a stomach bug, but they never went away. I was throwing up... Many, many times a day. I was nauseated constantly. First the doctors said it was a bug. Then they said it was stress. After many visits they had no answers and asked if I had an eating disorder. At that point I had been sick for over 6 months and lost 50 pounds. I frequented the ER so often for IV fluids that they knew on sight to find a tech that was good at starting IVs. By the time I had been sick for a year I was still no closer to a diagnosis and had lost close to 70 pounds. By then we had moved and I had all new doctors. These doctors were concerned. They wanted to find the problem and fix it.

February 2011

At 29 years old, after 14 months of being sick and numerous tests and lots of doctors visits I had an answer; I have idiopathic gastroparesis. There is no cure. I can treat the symptoms, but it will not go away. Gastroparesis means paralyzed stomach. Many people with gastroparesis are diabetic; I am not therefore my gastroparesis is idiopathic, meaning they have no idea what caused it. My stomach does not work correctly to digest food or liquids. It can take many hours or even days for food and drinks to digest. The other big part of treating gastroparesis (GP) is MAJOR diet changes. Low fiber, and low fat. No raw fruits and vegetables, no red meats, no high fat foods. I take multiple antiemetic as needed. They help my main symptom, nausea. One of my medicines has helped me to maintain a somewhat more normal life. Once I started it I could eat and drink again sometimes. The new medicine even helped me gain a little weight back. My worst symptoms now are nausea, constipation, and fatigue followed by more minor symptoms like bloating and abdominal pain. Because I do not get proper nutrients with my GP my bowels do not work properly.  I do not absorb nutrients well from food either. I cannot take many kinds of medications because my body does not dissolve and absorb the pills and many other medications exacerbate my GP symptoms.
It has now been three and a half years since I was diagnosed. Thankfully my vomiting episodes are rare. I am still nauseated all the time. It is usually a tolerable level of nausea, maybe because I have just gotten used to it. I have days or weeks where my GP flares up horribly and I end up needing IV fluids.  Thankfully, I have learned what I can and cannot eat, most of the time. Sometimes even my "safe foods" can start a flare. During a flare I vomit and feel horribly nauseated. At these times I rest more and stick to a liquid diet. Some days I cannot even tolerate liquids. Water is one of my biggest enemies. It seems like something easy to digest, but it is not. 

February 2012

According to Temple University Hospital Digestive Disease Center, 1.5 million Americans have gastroparesis. Many people have much more severe GP and require feeding tubes and take nothing by mouth. Many patients with gastroparesis do not have success with any of the treatment options. Gastroparesis effects much more than your physical health. It effects our emotional well being, our relationships with friends and family, and our feelings of self worth.

For me gastroparesis has caused me to have anxiety and panic attacks. It has changed everything about how I live my life. Thankfully, my family is very supportive, but even with their support I often feel discouraged because I find it hard to do daily tasks because of my nausea and fatigue. Some days just dragging myself out of bed and taking my son to the bus stop is enough to make me need a nap when I get home.

There is also guilt and I think it is probably the worst unseen side effect. I feel guilty for messing up vacations, for changing plans from eating at a nice restaurant to picking up food to go so I don't have to smell the food smells. There is guilt from not being able to take my son everywhere he wants to go and do everything he wants to do. There is guilt from date nights gone wrong because I feel bad, so we cut things short or sit around and do nothing. I have guilt from saying no to helping with things at church or backing out at the last minute and leaving them shorthanded.  I know that there is no reason for my guilt, but I struggle with it on an almost daily basis. I feel like I am letting down my family and friends.

Making friends is also difficult. Many social activities revolve around eating. When you show up for dinner and don't eat, people ask questions and sometimes it can get really awkward. It is also hard to maintain relationships because eventually people quit inviting you when you have canceled many times before because you were all of the sudden feeling rotten.

In the ER on vacation getting IV Fluids

Maintaining a normal family life is hard as well. Like I said my family is supportive, but we have gone on trips many times before only to have to stop so I can vomit out the car door or dump out the bucket I used while we drove down the road. We have also been to Emergency Rooms all over the country when I needed IV fluids while we were on vacation or weekend trips. One of the worst trips was when we went on a weekend trip to New York City and as we were about to get on the Subway I got sick and had to run to the McDonalds down the road because it had the nearest public bathroom. I spent almost an hour in the bathroom being sick while my husband and son patiently waited outside.

We eat differently than normal families. I still cook meals, most days. It is a daily struggle for me to cook meals that can satisfy my dietary needs and give my husband and son enough fiber and nutrients. It is also a struggle to watch them eat foods I used to love. Most days I just put on a happy face and enjoy my small piece of chicken and mushy squash and pretend to be happy while they chow down on a nice crisp salad or a juicy steak or a big piece of cake. Some days I am not that strong. I hate to admit that recently I have broken down into tears because I miss food, and more

August 2015

than food I miss my old life. I miss being vibrant and healthy. I miss being able to spend an entire day at the beach in the sun without worrying about dehydration. I miss getting in the car for a spur of the moment day trip without having to worry about whether or not I grabbed some gastroparesis friendly peanut butter crackers and my nausea medicine.

I love my life, but I want to be healthy again. I want to wake up knowing it will be a good day and lunch will not suddenly and unexpectedly make me sick. Some things change your life forever. Learning to live with an invisible illness has changed my life. I have learned so much about who I am and who I want to be. I don't want sympathy because I am sick. I want to be understood. I want people to see how one illness or one event can change everything in the blink of an eye.

If you would like to learn more about gastroparesis please visit: www.g-pact.org.