My SMAS Life, a journey shared for awareness, support, and research

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My name is Shawn and I live in Southern Oregon. I have the congenital form of SMAS. I didn't notice the changes going on back in 1991. It was my Wife that pointed out to me that I would often wake around 3-4am and vomit, very violently. Then I would return to bed until it was time to get up and go to work the next day. Then I began to notice extreme fatigue. I worked at a Ski Resort for 14 years. It was some hard physical outdoor work, and I loved it! Those were the best times of my life. But eventually I had to come to terms with my chronic fatigue, vomiting, sleep issues were all worsening. So I made a career adjustment and went back to construction. This time as an Inspector. That allowed me to put my smile on, do an inspection, then go curl up in the back of my vehicle during my vomiting sessions. At that time I had great insurance and the doctors were putting me through every nasty test they could come up with. I was in and out of the Hospital. During 1 of my Hospital visits they decided an appendectomy would solve my problems. They admitted later that it wasn't necessary, but once they had opened me up and clamped things off they had to continue the surgery and remove my appendix. That was 1998 and it did nothing to change my continuing illness. Again it was time for my Wife and I to make changes, realizing I would not be able to work much longer and living costs in Calif. are very high. So we decided to move our Family to Southern Oregon. I needed to breathe the freash air. All the while I'd been loosing weight. I went from a healthy 180 lbs to 115 lbs. at the time of my diagnosis. We had found a property we loved with a beautiful view and were awaiting close of escrow. During that time we were living in our 5th wheel trailer in the KOA park. I began a vomiting episodes again and by the 2nd day I knew this time something had changed and asked Deb to take me to the ER. They did an x-ray, then CT Scan to find my small intestine had completly collapsed around the SMA. They had to pump the bulge of liquid that had collected above the collapse, nothing could get passed it. Then an emergency surgery was scheduled. After they had finished my 1st major surgery and diagnosis the Surgeon came out to ask my Wife "how long has this been going on?". She told him of my years of vomiting episodes and other issues and testing that showed nothing. He said my lower intestine had atrophied due to the lengthy time with the lack of blood flow to various organs. When I awoke from Surgery I had a G/J-tube as well as drainage tubes. I had no idea what SMAS was. I had never heard of it before, but I was Blessed to have had a Surgeon who did know what he was doing even when it came to recognizing this rare "syndrome". the following is a record of my surgeries so far.

09-06-2003 - Exploratory Laperotomy, Duodenojejunostomy, Anastomosis, Gastrojejunal Feeding tube placed, and JP Drainage. This was when they diagnosed my SMAS. * Notes: CT scan notes SMA syndrome with dialated stomach and duodenum tapering right at the transition from the 3rd to the 4th portion of the duodenenum in between aorta and SMA.

2-10-2004 - I awoke to find my G/J-tube had come out completly. Luckly my Wife was able to wash it off and reinsert it as the Surgeon had taught her. Because we live 45 minutes from the Hospital he was good at teaching her how to handle the different situations that were possible.

4-15-2004 - I underwent a sleep study because while I was in the hospital the alarms would go off everytime I went to sleep. The study found I have moderate obstructive sleep apnea and central sleep apnea. I did not get passed stage 2 sleep and the total was 3.8 hours. REM (restorative) sleep was a total of 5.5 minutes. The problem is the gastro issues I deal with 24/7 preclude me from wearing the mask.

5-10-2004 -  Exploratory Laperotomy, for J-tube placement, and G-tube replacement. Witzel Jejunostomy, malfunctioning G-tube exchanged replaced with 24fr. Mallinckrodt tube without difficulty. * Notes: Witzel Jejunostomy, small bowel full thickness specimen was sent for pathology, G-tube exchanged with 24 fr. Mallinckrodt tube without difficulty.

5-12-2004 - 24 hours after discharge from the hospital. I was back at the ER with a J-tube occlusion. This was caused by the pharmacy that argued with my wife and even though the Dr. prescribed liquid. They did not have any in stock. So they gave her pills and told her to crush them and put the through the J-tube. It set up like concrete inside the tube and it had to be replaced so I could have my pain medication again. We should have probably sued for this mistake but my Wife and I were doing everthing we could just to keep me alive. No time for lawsuits.

5-18-2004 - Exploratory Laperotomy with extensive lysis of adhesions, Enterolysis, Revision of Witzel Jejunostomy, and Esophagogastroduodenoscopy (Duodenal Obstruction).

6-01-2004 - Extensive lysis of adhesions, revision of G-tube with Gastrojejunal tube, and Loop Gastrojejunostomy. * Notes: Removed Mallinckrodt G-tube and instead placed a Mikulicz Gastrojejunostomy tube and down into the small bowel. Some adhesionswere simply weblike whereas others were densely adherent. I simply could not find a plane between serosal surfaces. Others were like tethered cords, and surprisingly the paitent had a significant amount of fatty necrosis related either to the previous lysis of adhesions and or inflamation in the omentum (Recurrent obstruction of duodenum).

6-13-2004 - My insurance had run out for staying in the Hospital, so they moved me to a care facility (old folks home). They were so out of thier leage trying to deal with my tubes and gastro issues. I ended up with a staph infection at my IV site and sent back to the Hospital by ambulance for treatment. If my Wife wasn't there to watch them I may have died in that facility. I never want to go back! 

6-30-2014 - Open Cholesectomy (gall bladder removal) This was a very long and difficult recovery. I was not able to have it removed laproscopicly due to my previous surgeries, adhesions, and tubes.

The story's not over yet. I would be happy to answer any questions and I hope this information can further research and awareness for SMAS. Before another Warrior is diagnosed with an eating disorder, rather than doing the right tests to find the root cause of the problem. It is not always "just in your head". As of today 7-19-2016 I'm losing weight again and although I'm 6'2" tall I struggle to keep my weight above 120 lbs. and I'm frightened I could end up at the Hospital again.

I have a closed group of SMAS paitents and supporters on facebook called, "My life with SMAS, a journey shared for awareness, support, and research" Send a message and request to join if you are intrested in supporting others or sharing info.

Best wishes to you all!!