Gastroparesis: Laura's Story
I consider it my purpose in life to make a difference and fight for every second of feeling well. I will promote awareness and try to help others get to a decent place in their lives until I can't do it anymore.
Hi, my name is Laura and I have gastroparesis. I have had type 1 diabetes for 36 years. My gastroparesis was caused from my diabetes. Like most folks with gastroparesis, I did not recognize the early symptoms for years. In April of 2001, I was taken to the hospital with fears of a heart attack due to the incredible pain coming from my chest. They found nothing and it seemed to go away on its own. About a week later, I started having nausea and vomiting 24/7. One doctor did an endoscopy and had to literally scoop the food out of my stomach for an hour and ended up cauterizing 20 small stomach ulcers. The next two years were nothing short of hell. My doctors had no idea what was going on. I had hospitalization after hospitalization, test after test after test. I also had my gallbladder out.
During this time, I lost 60 percent of my body weight and was not doing well at all. Luckily for me, my PCP went looking through medical websites for doctors to see if he could find out anything for me. To my absolutely miraculous luck, he found a doctor in Kansas City, Kansas, who was doing an FDA study on the Entera Neurostimulator for gastroparesis. His article, written about diabetic people with gastroparesis, could have been written about me. My doctor printed it out for me, and we talked about it. He spoke to my local gastroenterologist and a week later I was off to Kansas to be part of an FDA study for the stimulator. I had the implant done, all the testing, and six monthly visits from Massachusetts to Kansas. Although it helped with the incredibly strong nausea, it only did a so-so job overall. I was also given a J tube, which actually saved my life. I was now able to get medication into my system, bypassing my stomach, so that it would actually help me. I spent the next 7-8 years with both good and bad days, and at least 10 to 15 hospitalizations every year.
In 2012, I went to a local doctor who monitored my stimulator, as the batteries were getting ready to die. Unfortunately, it's not as simple as changing a battery; you have to have an entirely new device implanted. I had the surgery in December of 2012 and did not get sick again until Thanksgiving of the same year. I've had my stimulator turned up in intensity in hopes of keeping the nausea at bay. It has done a very good job, all things considered, and I can proudly say that I have not been hospitalized since the new one was implanted in 2012. I still experience frequent pain and bloating, but I can cope with these symptoms. The 24/7 nausea and vomiting was what was killing me.
When I was out in Kansas, one of my doctors gave me a number for a nonprofit gastric motility organization. It turns out it was right here in my home state of Massachusetts. I joined, but nothing really happened for a few years. Then, one day, I accidentally got someone else's newsletter from them and called to let them know they had the address wrong. A conversation began.
I had been struggling since my diagnosis with the fact that I previously had a very good career and a wonderful husband, and now here I was a sick person, with what seemed to be no purpose in life. The motility organization helped me to have a purpose in my life by helping others cope with this disease. I began reading and hearing about other patients who were coming down with gastroparesis, and their stories were just like mine – doctors looked at them like they were crazy because these doctors had never heard of a paralyzed stomach disorder. I am fully disabled, unable to work, and I'm not well most of the time, but I do not let that stop me. I pushed and pushed as a volunteer, and I am currently a mentor who calls other people with this disease who are looking for a friend, someone to relate to.
Now, after some years of working with the motility organization, I have had a chance to actually see the difference that I have made in some people's lives. This gives me a reason to get up every day and the pleasure of knowing that I have made a difference by putting a smile on someone's face, or relieving someone’s stress when they didn't think that was possible. I now spend all of my good times volunteering and just talking to others with this disease to let them know that they are not alone, and that it is not in their head. This is a horrible disease that currently has limited medication or therapies to help.
There are over 5 million people with gastroparesis in the US, and it is hard to find two people who have gone through the same exact experience. What helps one person doesn’t necessarily help another, and a medication that helps today might not work tomorrow. Likewise, a food you can eat today might make you vomit and feel bloated tomorrow. It is a constant trial.
This disease has to be one of the hardest to deal with in terms of quality of life. Your whole world needs to change to a “new normal” with new dreams and wants. Between the disease and all the medications, it is hard for me to get up and get going every day. It would be so much easier to curl up under my covers and stay in bed constantly. That's how we all feel. In addition, I have found that almost everyone I have spoken to with any gastric disorder like this has felt abandoned by family and friends. In some cases, lack of understanding causes people to stay away. Now, when I am asked if I will attend activities or functions, my answer is, “Yes, I will be there if the disease lets me.” Gastroparesis can flare up at any moment. I can be completely fine, feeling wonderful, and in less than 60 seconds, I am trying to find somewhere I can throw up. I have been very lucky to have a husband who really meant “in sickness and in health,” as this hit me 5 days prior to our one-year anniversary. Many husbands would have left by now, because they can't understand this disease or just can't handle it
My diagnosis was a huge surprise to me. Even being a diabetic, I had never heard of gastroparesis. It is an overwhelmingly hard and complicated disorder that needs more awareness. Gastric motility disorders need to be brought to the forefront of research. I do as much volunteering and helping as I can, but I am only one. I consider it my purpose in life to make a difference and fight for every second of feeling well. I will promote awareness and try to help others get to a decent place in their lives until I can't do it anymore.