STEPHANIE'S PERSONAL STORY

February 15, 2016 Gastroparesis
Country : USA Satate : Washington City : Bellingham 

Hi, I am a 31 year old woman who was diagnosed with gastroparesis in 2008. I've suffered with digestive issues on and off from the age of 19, shortly after undergoing laparoscopic surgery for endometriosis and ovarian cysts. At the age of 28, after years of pain and discomfort, a gastric emptying test confirmed mild GP. At the time I decided to take a natural route and went on a gluten free diet, which for about six months seemed to change my life for the better. Unfortunately, this did not last and I began having severe symptoms including fullness and nausea, barely able to take in fluids. I ended up in the hospital having what seemed like every test in the book done, again diagnosed with GP.
 
With medication, rest and lots of family/friends support, I began to recover and a year later began a full time course in acupuncture school. I absolutely loved the program but traveling to and from every week (90 minutes away from home), missing my husband, not to mention the intense study schedule, was more than I could handle. By the end of the first year I had lost a tremendous amount of weight, in denial of my diagnosis and determined to live a "normal" life. However, my body did not keep up with my mind and again I ended up in the hospital, this time too malnourished to recover on my own.
After unsuccessful trials with another medication and a Botox treatment to the pylorus, I had no choice but to be put on a feeding tube. This is when it hit me...it was time to accept the situation and really focus on taking care of myself because I will not make it otherwise.
 
By accepting what I was going through as a part of my life, I was able to slow down and set priorities. I now focus on managing symptoms through diet, exercise and reducing stress. I've found other things to focus on in life while continuing to put self-care first. Though still on the feeding tube, my intake of food througout the day is increasing as I gradually work my way off. This doesn't mean I don't still have bad days but I have learned how to manage them by not letting the fear take over as well as figuring out what works and what doesn't.
 
I began writing about my experience on a blog (
www.journeywithgp.com), learning more and more about GP and how many others were going through similar battles. In January I started a program through the Institute for Integrative Nutrition to become a certified health coach, specializing in gastroparesis. I'm excited share and use my experience as a learning tool for others, to focus on the things we can do to help ourselves instead of dwelling on the things we can't. I never would have imagined this would be my life at the age of 31 but it hasn't stopped me from continuing to stay positive, hope for a cure someday, and in the meantime live the best life possible.

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COMMENTS (1)

October 7, 2016 21:35 — Janet

Hi Steph, I happened to read your story 3 days after my GI specialist told me she can't see how a laparoscopic hysterectomy could damage any nerves. I live in Australia and am 47 years old. Your story is almost identical to mine. Everything started going south after total laparoscopic hysterectomy in Feb 2016. I have lost over 30kg which would be about 67pounds. I have been so unwell. My life falling apart. Desperate. Have had colonoscopy, endoscopy, MRI of small bowl, barium swallow test, CT scans, Ultra Sounds & endless blood tests. Deep down, I have given up. I can't see myself going from one doctor to another. As suggested by my Nutritionist I asked my GI specialist about possibility of Gasroparisis. She said we should have seen something in all the tests & images we have done, and how could a laparoscopic hysterectomy damage those nerves? And even if there is nerve damage, there is no treatment for it anyway"! I feel so tired & misrable all the time. I don't really want to eat anymore. Doctors are telling me I am undernourished & should eat more, but it's easy for them to say. Who is going to have to endure all the drama that follows? I am so sick of having Ensure & Protein powder. I was having baby formula, and rice Cerelac for awhile. I can taste food for ages after I'm done eating & after a while the thought of it, no matter how much you know your body needs nutrition, becomes disgusting. And I don't even know exactly what on earth is wrong with me, nor do the treating doctors. Family & friends are pushing for seeking help from other doctors in other Australian states or the United States. But I am so exhausted. If images aren't showing anything then what is the point of seeing other doctors all over the place? Who? Where? Before I stumbled upon this website, I started doubting myself, how could no one Not have seen, had or heard of all these symptoms after a laparoscopy? Is it my imagination? Am I exaggerating? So many times I'd be very happy if one of the doctors would tell me that hey you have cancer and this is the treatment plan etc. I can't believe there are other people going through similar experience! And for so long! And I have given up already. Thanks for sharing your story Steph.