MY STORY

I have been sick for 14 months. It's been 418 days since I could eat normally. I was sick all of 2018. I am a very hopeful and positive person, but this time in my life has been challenging. I am hoping that by sharing my experiences I can help someone going through a rough time too. Here’s an explanation of what I have gone through - I kept it as short as I could, but putting a years worth of struggle into a few paragraphs is really difficult.

Starting December of 2017, I began throwing up every food that I swallowed, due to some virus. I was in severe pain and I was beginning to lose weight. I was hospitalized for the first time that December. Doctors tested me for almost everything but all the results came back negative. No one could explain why I was throwing up. Within only a few days of being admitted, the doctors decided to stop looking for possible diagnoses and said that I was having a “brain to gut response.” They believed that stress was causing me to throw up. I, however, had a gut feeling (no pun intended) that this was STRUCTURAL, but the doctors disagreed. They eventually called it “Rumination Syndrome.” They gave me a nasogastric feeding tube (NG tube) which went from my nose to my stomach. They then sent me home with no plan except for a follow up appointment with their psychologist, and a list of meds that I was supposed to take. They said that the only way that I was going to get better was with anti-anxiety medicine and psychology appointments. 

I began throwing up my NG tube feedings and it was awful. I started to lose more weight and became severely malnourished. I was sheet white. I began fainting and was wheelchair bound - it wasn’t fun. I was hospitalized a few more times. They eventually gave me an nasojejunal (NJ) tube which bypassed the stomach and went into the jejunum - I was able to tolerate this. The issue with nasal feeding tubes is that they apply so much pressure to the sinuses and have to be changed regularly. I probably had a total of 7 or 8 feeding tubes in the span of six months. The tube feedings also don’t satisfy hunger. Even though they were keeping me alive, I was still STARVING and it was horrible. I tried eating every single day. There were some days that I would literally throw up 60 times, but I still kept trying to eat - I still had hope. Not being able to drink water was probably the worst part of it all, I was so thirsty. I began to lose strength, I was in pain everywhere, and I was tired all the time. In April I started physical therapy which helped me gain some strength, but I was still pretty weak. Tube feedings don’t really give you much energy, so it was hard. I’ve always been really healthy - I was active, had good grades, played volleyball, was constantly social, etc. and this illness just seemed to take over my life. I was too weak for school and even going to the movies with my friends was exhausting. Everything I did took so much energy. 

Anyways, the only real treatment plan for their diagnosis (Rumination Syndrome) was a feeding program in Ohio. The program basically trains you to swallow what comes up - gross. It had a waiting list until July and I was basically told to hang on until then. It was hard, but we also just knew that this diagnosis was incorrect. None of my symptoms lined up with the true definition of Rumination Syndrome. We reached out to other doctors and had more tests done. We eventually discovered that I was able to keep down small amounts of water if I lied down completely flat. It was a miracle. THAT was proof that I did not have Rumination Syndrome. We looked into it more and discovered with a Barium Swallow Study that I had something called Superior Mesenteric Artery Syndrome (SMAS). We knew that my issues were positional, so we insisted on having the test done lying down AND standing up. They said that position shouldn’t matter, but for me, it did. With SMAS, the duodenum is being pinched by the Mesenteric Artery, creating a blockage. SMAS is very rare but mine was even more uncommon because it only acted like a blockage when I was standing or sitting. When I was lying down it appeared normal. That’s why it was so important to be tested both ways.

With our new findings, we wondered what would happen if I lied down long enough for food to move past the kink in my duodenum. I was able to get my feeding tube out in June because I was able to get enough nutrients via smoothies. I usually lied down for two or three hours after drinking each smoothie. I did three small smoothies a day and a good amount of water, which was a blessing. It was really consuming but I was so thankful because I didn’t need to have an awful NJ tube anymore. We tried several different meds that could supposedly help with SMAS but nothing seemed to work. We finally got to the right surgeon and he said that he was worried about my duodenum and all the damage that my SMAS could have done to it - because it went untreated for so long due to the misdiagnosis. We went to surgery a week later. I got something called the LADD Procedure. They basically moved all of my organs behind the mesenteric artery and had to rearrange them so that they could fit properly - they also removed my appendix. It got rid of my SMAS (!) but not everything went back to normal. 

Here we are now, January of 2019 - 14 months after it all started. We’ve gotten several tests done because something just hasn’t felt right. I have pain when I eat and I can only keep down clear liquids. After surgery (September 2018) I was able to keep down REALLY small amounts of soft food - sitting up! The portions were tiny and I had to wait a while for it to digest, but my circumstances were so much better than before. They said that it could take some time to be able to eat normally, but sadly it’s been almost 5 months since surgery and nothing has improved - if anything, my situation has gotten worse. I’ve been losing weight and I’ve been throwing up anything that isn’t pure liquid. My options are pretty slim. On Friday, January 25th, I am going to be getting another NJ tube to get enough nutrients until surgery. They said that if I lost any more weight then I would not be strong enough to make it through the surgery successfully. I am getting a surgery called the "Heineke Mikulicz Pyloroplasty" on January 31st (2019). They are going to remove my gallbladder because it is not working properly and could potentially be adding to my discomfort. They are also going to surgically place a Gastrojejunostomy (GJ) Tube into my stomach, which will be giving me proper nutrition until I recover and can maintain a balanced diet orally. This is going to be an open procedure, and my surgeon is going to cut open my duodenum and make it so that food can pass through. According to the tests, food - even liquids - are stopping at the duodenum for some reason. We believe that because of the misdiagnosis and getting to surgery so late in the process, that my duodenum has been damaged. This was the reason we went to surgery so quickly in September - we were trying to avoid this. We are praying that this surgery will allow me to eat normally again.  Fourteen months is way too long to live without a normal meal. We are praying this battle that I have been fighting for so long is finally going to conclude - with me winning in the end.