The story of my illness is one that is on-going and contains many victories large and small, as well as many devastating losses. I was officially diagnosed with Superior Mesenteric Artery Syndrome (SMAS) in December, 2013. I say officially because like many who suffer from this illness, I was ill to the point of near death by the time of diagnosis. For two years, with progressively worsening symptoms, I was passed from physician to specialist to practitioner for endless testing for common GI issues while I lost more weight and my ability to eat by mouth grew less and less. I was finally diagnosed through CTA imaging, which clearly showed the duodenum pinched between the superior mesenteric and celiac arteries, allowing only a 4mm opening for food to pass through. This explained my years of excruciating abdominal pain, bloating, constantly decreasing ability to eat “normal” portion sizes, and involuntary regurgitation. The less I could eat, the worse the constriction became, and the worse it became, the more weight I lost – a vicious cycle common to many with SMAS.
I had always been very thin due to a genetic condition called Marfan Syndrome, so I was never concerned about weight, but could not afford to lose much as I am over 5’10” and my weight hovered between 130-135 pounds at my heaviest. By the time I was diagnosed, I weighed less than 90 pounds and was immediately put on a nasal feeding tube for three weeks before corrective surgery could safely be done.
There is a “gold standard” surgery for SMAS called a duodenojejunostomy (DJJ), which I underwent in February, 2014. I thought, “My prayers have been answered! A few months of healing and eating right, and I’ll be back to my old self in no time.”
Sadly, I couldn’t have been more wrong, but it wasn’t until I began to research and advocate for my own health that I discovered the complexity of SMAS, a rare and often controversial illness.
Finding several support groups on social media became my saving grace and my faith was my motivation to keep going as I once again began losing weight. Less than four months after my first surgery, all my symptoms returned. With my family by my side, I began to desperately reach out to out-of-state medical facilities, local and national media, anyone who would listen, anyone who could help me and others who suffer from SMAS, a patient community in which statistically, 1 in 3 will die.
There is so much more to my story between my failed DDJ and now – everything from spending months in an out-of-state hospital under the care of specialists in SMAS and gastroparesis (GP), a parallel illness and one I was diagnosed with in 2o15, to being featured on local, national and international television, online and print media as interest was finally shown in the fight against SMAS and GP. I am now awaiting an organ transplant evaluation as I sit with the worst health yet on this journey.
The details are many and the story is long and complex and so many uncertainties abound, however, I can say without a shred of doubt that prayer and my faith have acted as my strength this entire time, often with the help of family and many kind friends of similar faith holding me up emotionally when I feel I can no longer fight.
I may be weak in many ways, but all these loving people help me to keep my faith strong, too strong even for SMAS and GP to take it from me.
Lisa Brown is 33 years old. She’s been married for six years and lives in Wisconsin. Lisa is diagnosed with Superior Mesenteric Artery Syndrome (SMAS), Gastroparesis (GP) and Fibromyalgia. Although confined to her home on IV nutrition for 14 hours a day, because she is unable to eat by mouth, Lisa enjoys spending time engrossed in her art and reaching out to others with chronic illness. Be Brave is Lisa’s first advocacy campaign from January, 2015.