The story of who I am is way more than what my illness is. I am a mother of two amazing children a preteen son named Trenton and a soon to be preteen daughter named Bentley. I have an amazing husband who is my main support, my cheerleader. We have been married for 5 years and together for 10. I am a passionate, caring person. My life has been about caring for others. I have worked in nursing homes and with the mentally disabled children. I love to garden and rehabilitate plants. I have taken up painting, and now writing.
The story of me, its a long one, a journey in which I am glad I have traveled. The person I am was severely impacted the day I was diagnosed with gastroparesis. An illness I wouldn't wish upon my worse enemy.
What is gastroparesis? It basically means that my stomach has completely stopped digesting food and moving it into the intestines. Seems like a simple thing that wouldn't be too bad, right? Well, I thought so myself when I first heard the doctors talking about it. But it is far from simple. If your stomach doesn't digest food or empty it into your intestines, you can't eat. When I first got diagnosed if I ate anything it would sit in my stomach for days, fermenting. It was a terrible feeling and produced the worse smelling gas I had ever smelt in my life, sulfur burps. The food was literally rotting inside of me. Those were the not so bad days. The days I was actually able to hold some food down. The worse part is the nausea and vomiting. I have a family, as I mentioned before. They have to eat. With eating comes cooking, with cooking comes the smell of food. Imagine morning sickness, when if you got the wrong smell you would be in the bathroom vomiting. That is what it's like. When you have the flu and someone brings you food and the smell sends you into a vomiting frenzy. I got use to the throwing up. It was kind of a routine for me. I would wake up and try to get the kids to school, then it would be countless hours of being in the bathroom. Throwing up hour after hour, wondering where the fluids are even coming from. In between vomiting fits I would lay on the floor in the fetus position in excruciating pain. Many doctors have told me that gastroparesis doesn't cause pain. If that is the case why one Earth am I always feeling it and crying myself to sleep because nothing can give me relief?
My life hasn't been easy the last three years. I don't want pity. I don't want people to "feel sorry for me". I usually try to hide how I feel. I cover up everything with oh I'm doing ok, or I'm fine. I am not one to seek attention. I don't want to be in the spotlight or even talked about.
It was the week before Halloween in 2013, I started throwing up and having a terrible "rotten" stomach feeling. I figured since I worked at the school I probably just contracted a stomach bug. After many emergency room visits, finally in November, I was told the doctor thought my gallbladder wasn't working properly probably due to gallstones. I had a sonogram and there were no gallstones. The doctor then ordered a CCK. I had to lay on my back for an hour while this machine watched the dye, that was injected into an IV, go through my gallbladder. I was given the results that day and told that it was only functioning at 3%. I was relieved finally an answer, and a simple one at that. I had it removed on November 13, 2013.
I was back in the emergency room a week later with the same symptoms. I was nauseous 24/7, vomiting anywhere from 5 to 10 times a day, the pain was so bad in my abdomen. I was sleeping anywhere from 18 to 20 hours a day. The doctors couldn't find anything wrong and finally sent me to see a gastroenterologist. It took a few months to get in to see her, Dr. Ellis. She immediately ordered tests to see what if she could find any reason behind what was happening to me. There was a day she ordered a barium swallow. You drink some poprocks like things and it causes gas in your intestines. Then you have to hastily drink a thick, milkshake texture, container of barium followed by a thinner version of barium. I was laying on this my back looking at this T.V. that looked like it was made way before I was. That's when the radiologist said. I know what's wrong with you. You have intestinal malrotation. I was born with all of my large intestine on my left side and all of my small on the right, my appendix was down by my uterus. The cause of all of the problems, or so my surgeon thought, was because my large intestines were twisting and the nerves were dying. I had 16" of my large intestines removed on April 28, 2014.
I was relieved when we found an answer and we did the surgery. I really thought it would be the end of my problems. I thought this isn't so bad. Sure I have a huge incision but it just adds to my character. I was wrong, boy was I wrong. The symptoms came back and they were terrible. On top of the previous symptoms I was bloating up anytime I would eat. I would have an almost flat stomach to looking like I could give birth at any minute. In the summer of 2014 I went 2 months without going #2. It was terrible. I started vomiting up stool. I was referred to another surgeon in November of 2014. He looked over my files and had a talk with my about everything that had happened and how I was feeling. He decided that I had colonic inertia. He believed that the malrotation and twisting of my intestines caused the rest of the nerves in my large intestines to die. I had the rest of my large intestines and part of my small removed in December 2014.
Again I was over joyed that I had found a solution to my problem. It was over in the past, just a small little sliver in the person I am. I again was wrong. The symptoms were still there. Only now I could finally use the bathroom again. I was still vomiting constantly, unable to eat or even stand to be around food, the pain was terrible. I went back to the my wonderful gastroenterologist, Dr. Ellis, and she did a test to see if my stomach was working properly. This test is called a gastric emptying study. I was told I needed to come into see her and made my appointment. She told me that I have gastroparesis. She explained everything to me and told me to try the diet. I was sent home with a stack of papers on what foods I could and couldn't eat. I tried this for a few months but nothing seemed to help. I was on so many nausea meds but they never stopped me from spending my "quality" time in the bathroom. She sent me to a motility specialist and that was a waste of time. She was probably the worse doctor I have ever seen. She wouldn't listen to me and would talk over everything I would try to tell her. Over the course of a few months we tried every motility drug out there and nothing seemed to help. She quickly gave up on me and referred me somewhere else. I met with Dr. Eaker and he sent me to a surgeon for a gastric stimulator, it is supposed to stimulate the muscles in the stomach to get it to empty.
I met with Dr. Laurie and he went over everything and did blood work. He found I was severely malnourished and dehydrated. We decided to do the gastric stimulator but my insurance wouldn't pay for any of it. So I went back to see him. We did a pyloroplasty, they cut open the intersection between my stomach and small intestines and divided the muscles in the hope that it would be easier for food to flow through. During this surgery he also put in a j tube and g tube, feeding tubes. Surgery went well but my body was not healing the way it should. He told me the next few months would be long and it would take a long time for my body to heal. This isn't a solution this is a crutch to help me get through life.
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