January 28th is SMAS Awareness Day. I have put together a little purple collection to represent SMAS Awareness.
SMAS, or Superior Mesenteric Artery Syndrome, is a vascular disorder with digestive consequences. When the space between the Superior Mesenteric Artery and the aorta is too small for the duodenum (the beginning of the small intestine), to pass food through, it can cause extreme pain and intestinal blockage resulting in possible hospitalization and can lead to sepsis and even death.
A personal story.....from one of our many warriors. PLEASE TAKE THE TIME TO READ THIS....
Aloha, I’m Jennifer from Hawaii, and I’ve been suffering with SMAS since 2013. My abdominal pain would get so bad and last so long I’d have to go to the emergency room at least once a month, sometimes once a week. I lost 70 pounds in nine months. I had many tests done like a colonoscopy and endoscopy, a mini pill camera, and other scopes and scans to try to diagnose my extreme pain. However, because the cause of my blockages was coming from the outside of my intestines, not from inside where everything was scoped, doctors couldn't see anything wrong. Therefore, like many SMAS patients, I went through a very stressful period where I was misdiagnosed and not believed.
Because of weight loss, malnourishment, and inability to eat due to pain, I was misunderstood and misdiagnosed at first as having an eating disorder. All my pain and emergency room visits were blamed on my supposed inability to handle stress. At doctors’ suggestions, I spent more time in therapy trying to figure out if there was a mental reason why I was in pain and couldn’t eat, than I spent in doctor’s offices seeking a medical origin and solution. I knew within myself that my problem had a medical origin, but couldn’t get anyone to listen to me. I went through a few doctors before I found one caring enough to try and research my symptoms.
Recently, I read a medical article about SMAS in which the doctor likened SMAS-related pain to that of late-stage pancreatic cancer. Even though it’s difficult to compare pain, I felt vindicated to know that my pain is real and in reality, that it is severe. I’m not a wimp, it’s not in my head, I’m not causing it directly or indirectly, and there’s nothing I can do about it. I am not a drug-seeker. Finally, in an ER visit, the problem was seen on CT scan and recognized by a gastroenterologist, and I had caught my SMAS on camera and was correctly diagnosed.
I had corrective surgery for my SMAS this last spring. SMAS is a difficult disease to overcome; out of all SMAS patients who have had corrective surgery, only 1/3 see improvement of symptoms, 1/3 see no improvement, and 1/3 have worsening symptoms. Since I joined an SMAS Support Facebook group almost a year ago, two members have passed away from this disease. (ONE OF THESE MEMBERS WAS OUR TAYLAH) I have been so sick that I am unable to work and, at times, even care for myself. My best hope for remission of symptoms is to gain enough weight to replenish my missing Mesenteric fat pad that holds the arteries open around my small intestine.
My life had been turned upside down as a result of SMAS. The most surprising lessons I’ve learned is how difficult it is to get medical professionals to take you seriously when your symptoms are not easily explainable, and how helpless and horrible it feels to be medically mistreated. As a result of the trauma I’ve endured as the hands of doctors who, for instance, blew me off as being a “drug seeker” when I had a severe intestinal infection that required immediate antibiotics, or insisted I had an eating disorder because I couldn’t keep food down, I vow to be a vocal and powerful medical advocate for myself and anyone else who needs help being heard.
The silver lining is, of course, that I am incredibly thankful for all the big and small things. I developed a deep meditation practice through the process of being sick, and my level of compassion for others and desire to help has naturally grown. I have learned to find deep fulfillment and happiness despite being slower, dependent, and limited. SMAS is a devastatingly difficult and misunderstood disease. Like with any and all illness, we who suffer from SMAS have no choice but to rise to the occasion. We are survivors and warriors.