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Katrina’s Story (SMA Syndrome)

Katrina's Story SMA SyndromeI am 19 years old. I thought I was pretty healthy, but when I first started to feel it coming on a few months ago, I was horrified. I thought I had overdosed on nicotine, so I quit smoking. When that didn’t work, I thought I was pregnant cuz I was getting so nauseous. Then it turned out not to be that either. I had already gone to the doctor for a blood pregnancy test. It came back negative.

So I went to the doctor’s, again. They did a pelvic exam and blood work. Everything came back normal. So I went home, thinking I just was sick. Then I quit eating so much food and tried to go for easily digestible foods like soup. I was also getting very dehydrated. I went back to the doctor’s when nothing was working. They couldn’t find anything wrong and thought that I just had acid reflux. They gave me medication for that. The doctor sent me home and told me that it should work within a week, and I should feel better.

After a week, I felt slightly better, but I was still sick every single day. I wasn’t vomiting, but I felt like I should be vomiting. So I went back to the doctor and said that it wasn’t working. So she gave me a stronger dose and sent me back home. I took that for two days, and it was not working and was making it worse. So I went back to the doctor’s, and they sent me to the hospital to get a CT scan with barium. They were going to check out my abdomen and my intestines.

When they showed that there was some compression on my duodenum, I looked up what SMA syndrome was. Every single symptom of SMA syndrome I had, except for vomiting. So I called my doctor and said that I wanted an upper G.I. done. My doctor refused and said that she took a closer look at my x-rays and that it looked more like I wasn’t getting enough blood to my intestines. I told her I wanted a referral to a gastroenterologist. She said that she wanted to get another CTA scan done, so I agreed, since it was just the IV contrast and not barium. When I got that done, it confirmed that I had SMA syndrome. That would explain why I was feeling so nauseous every single day for months.

I am now having a referral to a vascular surgeon. I am waiting for the surgeon to contact me so we can figure out how to fix and reverse my problem. I feel sorry for everyone who has my problem but has it worse than I do. I can’t stand stomach pains or anything like that, and I know that a lot of other people have it a lot worse than I do. I only dropped around 12 pounds from my SMA syndrome, and then decided I needed to eat a lot more food, even if it hurt me. I found certain foods that were easier to digest that were not liquids. I eat a lot of junk food, but I stay clear of a lot of bread.

Katrina
Oklahoma
Submitted 12/01/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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6 comments

  1. Brigitte Estelle Gaudreault

    Bonjour Katrina,

    I am sorry for the pain you are going through ! Keep fighting like a girl Katrina, keep writing, we need more ♥ HEROES ♥ like you ♡ ♥!

    With love from,
    Québec, Canada
    Brigitte Estelle xxx

    • Thank you so much! I have been to a gastroenterologist but they have done nothing so far except an upper gi. I have found some useful things to do to ease it all. I just lay down most of the day. I’m glad you have replied. It makes me feel so much better that others have seen and for you to have given me some strength. Thank you. ?

  2. i just received an official diagnosis of smas syndrome. I lost probably lost 10 pounds due to it. Nausea all the time, than sometimes dry heaving in the morning which would bring on this sharp radiating pain in chest. Pain is a chronic issue. I saw one G.I surgeon who had no success with doing this surgery, his patient is still in pain. So i will search for another surgeon. Im worried about being this “experimental” patient due to this being so rare. I would love to see a doctor at Stanford. Something that bothers me from my appointment with my G.I doctor was the fact he said if I do not gain weight they wee going to put a tube down my mouth to my small bowel to feed me. Im 5’9 and I am 143 pounds. Yes I am thin, small boned but I can only eat so much and its terrible pain and nausea. I do smoothies loaded with spinach, almond butter, dates, sun warrior protein and banana than blend with almond milk. Now i am focusing on building muscle in that area. I am very confused, a bit scared of this. In research I have seen the negative aspects of this rare disease. I really feel its my body type. I also recently had gallbladder removed it was twisted and limp! I also have Crohns and tested high on genetic test for celiac. They have strong suspicion i have that as well. Next tests up are MRA and endoscopy. I am in hell. Just want this over. I ask myself will this always be my life? I am so glad I could write this out. It felt so good to find others who have it on this site. Thank Yu for sharing your stories. Much love

    • I had bowel resection about 3 weeks ago. Emergency surgery because small intestine was wrapped around a small band of scar tissue and it was strangulated causing gangrene three and a half feet of small intestine or taken away. I was in the hospital an additional week went home and in the middle of the night was back again. They told me after a cat scan that I had SMA and to treat it they put a tube up my nose down throat to decompress the stomach they gave me great relief they removed about 2 liters of water.I’m in the hospital as wepeak

  3. I know exactly how you feel, Nicole. It is such a booster to find others with the same problem. I have found something that may help you. After I eat, I lay down on my back with my head and shoulders propped up. It helps ease the pressure off my stomach. Though, doin it for a week straight isn’t a good idea. I started to have severe back pain that made it worse. But laying down after you eat for. Couple hours works for me. I have been to a gastroenterologist and he did an upper gi and found nothing else. They are still ruling everything else out before they do anything about it. I’m still waiting for them to do something. I feel like I will never be fixed and that I will stay this way forever. It scares the living day lights out me cuz I can’t do much anymore and it’s just constant pain and nausea. If it’s not one it’s te other. Trying to do stuf with this problem is the most difficult thing ever. I used to think I had a bad life but this makes my life before seem like heaven. I never knew that life could be this complicated with the little hope that the doctors may be able to do something about it. I am praying for you and let’s stay strong together. Let’s hope life takes it’s hand back from around our stomachs. ☺️ I hope you make it throughout this and life pain free and nausea free. Good luck Nicole. ?

  4. I have SMA syndrome too. I’ve been to a specialist and there wasn’t much they could do for me only surgery. They recommend weight gain by consuming those shakes and drinks that help you gain. I’ve gained around 10 pounds which has helped but it’s still pretty bad. I hate eating. I get nervous to eat because I don’t want to throw up. I’m in my twenties and I’m starting to get nervous about pregnancy. Do you think is having this syndrome won’t allow us to have kids? Because I’ve been thinking about how the baby pushes on all your organs and squeezes them together. Do you have any information about that?

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