Beating Gastroparesis: My story

I think that it is important to hear different people's journeys of dealing with Gastroparesis. Even though we all have the same diagnosis of Gastroparesis, we are all different. The severity of our pain, nausea, vomiting, bloating, etc changes from person to person. There is not just a "textbook" definition that everyone falls under that has this diagnosis. We have different causes as well and different ways of coping and how we handle ourselves. I think it is helpful to hear other people's journeys of living life with Gastroparesis.

This is just a glimpse into my life with GP. I came up with ten questions that give you a little insight of what life is like for me and how I deal with my disease.


1. When were you diagnosed?
I was diagnosed with Gastroparesis in July 2009. I was seventeen at the time. It was amazing to actually have a diagnosis for all of my symptoms, even though it has no cure. Being able to have a name on it was helpful and gave me some comfort because I knew what I was dealing with and could start figuring out how to treat it.

2. What caused your Gastroparesis?
Right after I turned sixteen, I came down with a bad stomach virus that lasted for about 2-3 weeks. It was horrible to go through. I was vomiting all of the time, had constant nausea, and got to the point where I got dehydrated. I was in guitar lessons at the time and had our big concert in the middle of May and was so sick. That night I ended up in the emergency room for dehydration. I had blood work done and got fluids through my iv. I had been pretty healthy growing up and this was my first time actually in the Emergency Room. It was terrifying because I just felt awful and was miserable.
After that visit, I never really got better. The stomach virus went away but I was still vomiting 2-3 times a week in the beginning, as time went on it progressed and I saw my pediatrician who referred me to see a GI specialist because she felt like there was something going on with me. I ended up having more vomiting and constant nausea. It got as bad as vomiting 10-12 times a day and not tolerating anything, even water. I was constantly in the hospital for dehydration.

3. How long have you had symptoms?
I started having symptoms in May of 2008, right after my sixteenth birthday. It's been almost four years now living with daily nausea, vomiting, bloating, acid reflux, weight loss, and dehydration.

4. Who diagnosed you and how were you diagnosed?
Getting diagnosed with Gastroparesis was such a challenge. I was misdiagnosed with something called Cyclic Vomiting Syndrome. The doctors did not know what was wrong with me and had no idea. My mom kept researching my symptoms on the internet and finally found out about Gastroparesis. When we read the description and all of the symptoms it was like they were talking about me. I matched it perfectly. We printed out the information on Gastroparesis and brought it into my GI doctor. She had me tested for Gastroparesis at an outpatient center through a Gastric Emptying Study. This test is where you eat these eggs that have radioactive dye in them and them each hour you get an x-ray done that shows where the food is and how much has moved through your stomach and digestive system. After four hours only a small trace of food had moved out of my stomach, the rest was sitting there in my stomach. The test was hard because I was super nauseous during it and had to try not to get sick during the test. As soon as the test was over I ended up getting sick in the bathroom.

5. What adjustments have you had to make to your life?
Living with Gastroparesis has changed how I live my life. Its a struggle to get out of bed in the morning and fall asleep at night. I live with constant pain and nausea and everyday I get sick. It's like having the flu 24/7. Its become my "normal" though for my life and I'm learning to accept it and deal with it the best that I can. I have had to cut back on how much I work and change all of my eating habits.I've had to change the activities that I can participate in as well.

6. How have your friends and family dealt with your sickness?
My family has been really supportive with my illness. I know that it is a struggle for them to watch me go through it and its hard because there is no cure and not much that we can do for it, but they have stayed with me during hospital stays, made me laugh, comfort me, take me to doctors appointments and the ER. My friends had a hard time dealing with me being sick. I was accused of seeking attention, making it up, trying to get out of hanging out with them. I lost my entire group of friends when I was getting diagnosed mostly because they did not understand what I was going through. Its hard enough to be sick but then to have people doubt you and spread rumors about you just makes things worse. I think its important to find people that can be there for you, even if they do not fully understand what you are going through, it helps to have people to talk to or that will listen when you need to vent. Its also important to find people that can handle you being sick and the sad thing is alot of people have a hard time coping with it.

7. What treatments have you found helpful for you?
I tried a bunch of medicines and had little luck with them. They were not helping my symptoms and in fact some of them made me worse or had bad side effects. On March 18, 2010 I had surgery to get my Gastric Stimulator which has been the best decision for my health so far, its not a cure and doesn't help everyone but has worked for me so far. In addition to the gastric stimulator I take phenergan for my nausea and zantac for my acid reflux as well as some other medications for my other diseases.

8. How has being sick affected you school/ work?
Living life with a chronic illness has greatly impacted the way that I did school. I had to finish high school through online classes because I could not sit in a classroom without getting sick. I wasn't able to make it to classes because of my health, but luckily I was able to complete my junior and senior year of high school all online. I actually ended up graduating with honors. It was a challenge, there were points where I thought I was going to have to drop out from high school completely because of all of my hospital stays and how sick I was. Now I am in my second year of college, which I did not think would be possible. I've had to make alot of accommodations with the way that I do school. I take mostly online classes and took one on campus class per semester, that was a struggle. I've had to miss classes for surgeries, long hospital stays, and had to use a wheelchair and a walker one semester because of the pain in my legs that I was having. I have managed to get good grades still. It's important to tell your teachers the first class that you have a chronic illness and get in touch with the disability office at the college so that they can help you make accommodations. I started going to college to become a Child Life Specialist, it is like a counselor for pediatric hospitals but they also plan fun activities and help children cope while in the hospital, however, since I've been sick I have wanted to be a nurse or my long term goal a nurse practitioner. My last hospital stay, I was talking to the nurses and techs and the tech actually convinced me to pursue my dream of becoming a nurse. I decided to take this semester off from school because of my health situations, but am planning on going back this summer to start nursing.

9. How has being sick affected your social life?
With being sick there is always an unknown, I never know when I am going to have a flare up. This makes it hard to plan ahead for events and activities. I also cannot just go out for pizza and its hard because many social activities seem to involve food. I try and make the most out of my life and try and still do some social activities, but there are times where it is hard just to get out of bed. I try and take each day one at a time.

10. What has given you hope/ encouraged you to keep fighting?
Many things have encouraged me and given me hope to keep on fighting against this disease. I really believe that everything happens for a reason and that there is a purpose for why I am going through everything that I am going through. I know that God wants to do something huge with my life and I feel that he gave me this and knew that I could handle it, even when at times it has been a challenge. I really enjoy being able to help others with this disease, I love getting to meet and talk to people from all over the world that have this disease. I feel like part of the way that I cope is to try and help others know that they are not alone in this and to encourage them to keep on fighting and remain positive. I have a passion to educate, spread awareness, and help people overcome this disease. Being able to talk to people that have Gastroparesis has been so helpful because they know exactly what its like to go through this. Anyone that is battling this disease gives me hope and encourages me to keep fighting.