My Fight with SMA Syndrome

Many people know that I recently had major surgery, though I haven't explained why. As time goes on, more people have started asking about it, so I find it would be helpful to explain.

I suffer from a very rare and serious condition known as Superior Mesenteric Artery Syndrome (SMA Syndrome, or SMAs for short). SMA syndrome is most easily described by simply saying there is a part of the intestine that normally goes between two arteries. For me, those arteries are squeezing that part of my intestines, not allowing much to pass through.The following picture shows this very easily, with the one on the left being a normal structure, and the one on the right more like what I had going on.


There are a number of different causes for SMA syndrome. For myself, it is believed to have been caused by growing too much too quickly causing a structural abnormality, as well as low body weight. The SMA-aortic angle (as viewed in the image above) for myself is much more narrow than it should be. The two arteries are almost parallel, leaving little room for the part of the intestine that's between them. Additionally, though I have always been thin, I have been slowly but steadily (and rather unintentionally) losing weight in the past almost two years causing a reduction in visceral fat in my abdomen. Visceral fat is the fat that is supposed to protect the organs, and in this case, help keep this problem from happening.

There are a lot of things that SMAs can cause. For myself, it started as acute pains almost two years ago where everything was deemed normal. It slowly progressed to frequent nausea which further spurred the weight loss, because I couldn't eat without feeling sick, sometimes for several days at a time. I also had issues with gastritis, which is now managed by medication. I continued to have problems, but it didn't get severe until a few months ago. It was actually the weekend of my little brother's 7th birthday, at the beginning of March that things got bad. I had been experiencing an inability to eat large amounts of food at one time. I would get full pretty fast, and occasionally having pain when I did eat. This quickly became a problem more and more often. I was getting to a point where I was changing my diet on my own because it was so difficult to get appointments with my doctor. I was doing everything I could to try to get the nutrients my body needed without being in so much pain. I didn't want to keep losing weight.

It was so bad one night that I ended up having an emergency doctor's appointment the next day, and my doctor saw me before seeing other patients who had had appointments at the time. From then I was put on a liquid diet. A few days after that, I saw my surgeon, and surgery was very quickly decided on, for less than two weeks after that date. I was told to remain on the liquid diet as much as I could, but was allowed to do so at my discretion. There were times in that two weeks before surgery that I ate solid food because all I wanted was food. I just wanted to eat. It caused terrible pain, as I knew it would, but other than that my body felt so much better having real food in it.

Over the process of trying to figure out what was wrong with my stomach, I have had a number of tests done. First I had a regular ultrasound of my upper abdomen. Everything came back normal. Then I had an upper endoscopy - everything was normal. Next was a full abdominal CT scan - not normal. This was the first test to spot any sign of SMA syndrome (in addition to a number of other, less severe issues). I also had a gastric emptying study where I had to eat a radioactive egg sandwich, then have pictures taken of my stomach every 15 minutes for a few hours. This was also not normal. It showed my stomach emptying at a much slower rate than was normal. When my stomach should have been less than 50% full, it was still 78% full. I also had another upper endoscopy (several months later) that did not show everything as normal. This time, they found I also have a hiatal hernia, which explained some of the terrible pain I've been in. I then saw a vascular surgeon where they did an ultra sound of my abdomen and looked at blood flow in the area as well as looking for any structural abnormalities. They confirmed the diagnosis of SMAs and also realized I have another rare and serious condition called Mesenteric Arcuate Ligament Syndrome. I honestly don't know what that even is, because I never had to worry about it. My final test before surgery was an Upper GI Series where I was again told I had a hiatal hernia, and I was able to see the point in my intestines that was being compressed.

The next step was surgery. I had what is called a laparoscopic dudenojejunostomy. Lots of big words that basically means they moved my intestines around. I unfortunately cannot find an image that helps to better explain the procedure they did. But they made four incisions in my abdomen, and then went in and moved my intestines around and basically created a second path from my stomach that went in front of the arteries that were causing an obstruction. They didn't remove anything, so the original path is still there, just no longer needed. It is possible that over time (many many years) if the original, obstructed path were to open up again, then the new one would just scar closed because it is no longer needed. So now I basically have two paths out of my stomach, that eventually merge back to the same point. They just shortened everything a bit to create the new path. After surgery, I wasn't allowed to eat or drink anything for the rest of the day. The next day I was put on a full liquid diet. That basically means anything that is mush: blended soups, cream of wheat, applesauce, yogurt, ice cream, stuff like that. I spent three days in the hospital, dealing with minor complications along the way, and went home the evening of my birthday. I have to remain on the full liquid diet until my follow up appointment (a total of two weeks of nothing but mush). If everything is deemed to be healing well and there are no problems, then I will be moved up to a bland diet for a few weeks, and then slowly return to a normal diet as I can tolerate more foods. The recovery process is going to take a few months in all, assuming all goes well. Because the surgery caused a lot of trauma in my intestines by moving everything around, I have to take things slow so as to not cause any further damage as my insides heal.

This is a very rare and serious condition that honestly really sucks. But I have been incredibly lucky. I've had a great team of doctors working with me who saw and acknowledged the problem to help treat it right away. There are a number of people in the medical community that do not believe this to be a real problem. Because of that, often times eating disorders are blamed. Unfortunately in this case, not eating and losing weight isn't a choice so as to be thin. For me, my avoidance of food was because of the amount of pain it caused. I hate losing weight. All I want is to be healthy, and it's going to be a very long time before I am healthy again, even if all goes well.

Nearly two weeks after surgery, I still spend most of my time in bed, unable to do much. And on the off chance that I am out or am doing more, I end up dealing with a lot of pain afterwards. It gets really boring spending every day alone in bed, but I have to be patient because I definitely don't want to do anything to prolong the recovery process.

If you have any questions or comments, please feel free to get in touch with me, either in the comments section here or on Twitter. I'm sure there's a lot more that I could have elaborated on further, as this is a complicated issue that is difficult to understand.