Hi, my name is Stephanie and since the age of 28, I have been living with gastroparesis (GP). This is a severe digestive disorder that basically means paralysis of the stomach. Most recently this has developed into digestive tract paralysis affecting the motility of the intestines as well. This condition can cause chronic nausea, pain, fullness, bloating, vomiting, and inability to eat foods most take for granted. In January of 2013, my health took a dive for the worse. This resulted in drastic measures and I now depend on TPN, total parental nutrition. This is done through what is called a PICC line IV in my upper right arm, which slowly drips a liquid formula into the vein over a 12 hr period, supplying enough calories and nutrients to survive.
That said, I have not given up hope to finding an answer and a better way to live. Though there is currently no cure for GP, I continue to seek out specialists, research, and explore tests/treatment options. Read more at the end of this page how you may be able to help!
I’ve lived with digestive issues on and off from the age of 19, shortly after undergoing laparoscopic surgery for endometriosis and ovarian cysts. It started with heartburn and eventually symptoms that were diagnosed as IBS. Around the time of turning 28, after years of pain and discomfort, a gastric emptying test confirmed GP. At the time I thought I could cure it through diet alone and went completely gluten free. For about six months I felt amazing but it didn’t last and I began experiencing severe bloating, fullness, nausea and eventually was barely able to take down fluids. Two months later I was in the hospital having every test in the book done, again confirming GP.
With medication, rest and loads of family/friend support, I began to recover enough to maintain a restricted diet/lifestyle. Determined to follow my dreams, a year later I began a full time plus program in acupuncture and Chinese medicine. The experience was incredible, but traveling back and forth every week (90 miles each way), missing my husband, not to mention the time and stress involved with such intense studies, became more than I could handle. By the end of the first year I had lost a tremendous amount of weight, in denial of having a chronic illness, because I was determined to live a “normal life.” By June of 2010 I ended up back in the hospital, this time too weak and malnourished to recover on my own. After unsuccessful trials with another medication as well as trying the botox treatment (injected into the stomach to help move food through), I had no choice but to be put on a temporary feeding tube, called a J-tube. This is when it really hit me…it was time to accept my illness and really focus on taking care of myself because otherwise I wouldn’t survive much longer.
By accepting this as part of my life, I was able to slow down and set priorities. I began to focus on managing symptoms through diet, exercise, by limiting stress and finding other passions in life such as creativity and helping others. My intake of food throughout the day was small but enough to survive.
I began writing about my journey, learning more and more about GP and how many others were going through the similar battles (www.journeywithgp.com). Motivated to help, I began a program through the Institute for Intigrative Nutrition and became certified as a Health Coach specializing in gastroparesis as well as other digestive disorders such as IBS. I was excited to use my experience and education as a learning tool for others, to focus on the things we can do to help ourselves instead of focusing on the things we can’t.
I worked with a number of clients just like me and was surprised at how much just having someone to talk to helped them, to realize they were not alone. In addition to coaching, I also organized the first annual Awareness Walk for Gastroparesis that took place on September 8th, 2012. The event was amazing! We raised close to $13K for the Digestive Health Alliance. It is now being used for grants in gastroparesis research. Helping others and advocacy has become my passion and keeps me moving forward. I never would have imagined this would be my life at this age but it hasn’t stopped me from continuing to stay positive, be an advocate for awareness, and in the meantime live the best life possible.
Since starting TPN I have stopped coaching in order to focus on self-care. I still blog and have a Facebook page to connect others and provide any support I can. With all the help I love to give to others, I am also asking for help myself. In addition to the piles of current medical bills, we are looking at further testing and treatment options so that I do not have to depend on TPN for the rest of my life.
You can learn more about my hopeful plans as well as making a donation here. If you are unable to contribute any funds at this time, I graciously accept kind words, smiles and big hugs! The ultimate goal is to someday make this my journey with wellness site and continue on the path to helping others 🙂