Lynette’s Story

My story begins at birth.

I was born with a genetic disease called Ehlers Danlos Syndrome. Sadly, this disease is missed and you are just a medical mystery. At 8 years old I began having horrible constipation and stomach pain. We were told to just eat more fiber, nothing worked. I was always seriously underweight and nobody could figure out why. At 14 I had my first colonoscopy and there were countless ulcers and polyps. I was diagnosed with UC, however, my constant constipation didn’t line up with the diagnosis. It took years before a neurologist after I had a stroke young, noticed vein abnormalities in my brain. He also noticed my comfortable way of sitting was practically a pretzel and decided to test me for a connective tissue disease called Ehlers Danlos Syndrome. I scored 9/9 on it.

Finally, we had something to work with. I was sent to a gastric specialist when suddenly I couldn’t stop vomiting after eating and was losing weight I didn’t have to lose. Further tests revealed I had gastroparesis (paralyzed stomach). In 2020 I had a gastric pacemaker placed to help with the vomiting. However, things still were bad. Finally, in August 2021 I had a Sitz marker study and it found my colon was paralyzed as well. I was referred to a colorectal surgeon. I saw him on 8/31/2021 and had my total colectomy with ileostomy on 9/23/2021. Sadly, my perfect laparoscopic surgery turned into an emergency open surgery only a week later because I was internally bleeding. Due to Ehlers Danlos Syndrome, my veins are fragile and one “leaked” in my pelvic region.

I have so much freedom with my ileostomy and I am getting healthier every day.