- Posted February 2, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
My SMAS Life, diagnosis and fight
I was diagnosed with SMAS (Superior Mesenteric Artery Syndrome) in 2003 during a emergency surgery that saved my life. SMAS is one of the rarest gastrointestinal disorders known to medical science. This very rare disorder is more common in women,and has a 1 in 3 mortality rate. There are fewer than 500 cases known worldwide. I'm 47 years old and I've spent my life fighting this problem and really had no idea what I was dealing with until recently. I went undiagnosed for over 10 years. Not for the lack of great insurance and every nasty test they could put me through, but for the lack of a diagnosis with this very rare gastrointestinal disorder. There are 2 forms of SMAS, chronic/congenital or acute/induced. Mine is the chronic/congenital type meaning It is something I've always lived with and it progressively worsened. Actor Christopher Reid/Superman had the acute/induced type of SMAS after his accident and confinement to bed and wheelchair.
Prior to my emergency surgery in 2003 and subsequent diagnosis I had been diagnosed with several other issues. In fact there was over 30 different diagnosis. Some included, fibromyalgia, IBS (Irritable Bowel Syndrome), migraines, nausea, low T, frequent vomiting, chronic fatigue, sleep apnea, constipation, and of course, depression to name a few. With each diagnosis came another drug prescribed to treat symptoms. At one time I was on 15 different prescriptions. Many of which only caused side effects, and solved nothing. I had an appendectomy and was told that would solve my problems with stomach pain and vomiting. It didn't change anything for me.
It wasn't until we arrived in Oregon that I could no longer keep anything down. This time I would take a sip of water and vomit 8+ ounces of fluid. At the Hospital after an MRI they found my intestine had completely collapsed around the Superior Mesenteric Artery. They had to pump a bulge of liquid from above the collapse before my first of 4 major abdominal surgeries.
Following the 1st emergency surgery, the Surgeon came to ask my wife "how long this had been going on". She informed him of my 10+ years struggling with illness and undergoing numerous tests. He then told her that due to the lack of blood flow for a long period of time my lower intestine had atrophied. And that he performed a duodenojejunostomy (I may have spelled it incorrectly) then removed, rearranged and reconnected my intestines as necessary. He also installed a G and J tubes, 1 directly goes into my stomach and the other goes to my lower intestine. This is when I received my SMAS diagnosis (2003). One of the strange and misunderstood things with SMAS is reverse peristalsis. They did catch it happening with my system while I was undergoing PET (nuclear dye) Scan during my lengthy stay at the hospital. They performed the scan several times to make sure. I believe this is what causes my continuing frequent and violent vomiting. At the time of my hospital stay and surgeries I weighed 115 pounds and I'm 6'2" tall. Many times, especially in women it is overlooked and misdiagnosed as an eating disorder. I was simply told my pain and symptoms were "all in my head" by several doctors. I now try hard to maintain a weight above 135 pounds and use both tubes for feeding. Although I've lost all of my teeth due to the constant vomiting. I still try to eat a small meal once a day by mouth when possible. It's more for the taste of something rather than to feed my non existent appetite. I have now also been diagnosed with mal-nutrition, mal-absorption, because of damage that has been done from several years of this disorder. Which probably explains the problems I've had trying to gain weight or even with prescription medicine that never seemed to make a difference. I now have just 3 prescriptions I use as necessary,1 for is a patch for pain (pills do not work for me), 2nd is an ointment for skin irritation my tubes, and the 3rd is the controversial marijuana (yes, I have an actual, valid prescription) and it helps with nausea and appetite. It helps with attitude as well, and when you live with a very rare disorder and so much misunderstanding, I think it's a good thing.
I do have much more I could add to fully tell my story of SMAS and just what a toll it takes not only on the one who goes through it. But also for all of those friends and family lost because of misunderstanding and in many cases misdiagnosis. It's not the only invisible illness out there, but SMAS deserves to be studied. Because 0.13% is not too few to save!