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Kelly’s Story (Gastroparesis, SMA Syndrome)

Kelly's Story SMA Syndrome and GastroparesisI started out with gastroparesis in Aug. 2013, but it seems as though I have had it for years. My doctor was very neglectful in my treatment, and I got progressively worse. I ended up at the point where every time I ate, I was in pain or vomiting. My GI doctor, again, was neglectful. This turned into a fear of food and then got to a point where I actually could not eat at all. I was frustrated with my GI doctor and was at 87 lbs. I had had enough and called my sister, whose husband is in the medical field. He advised me to go see my family doc. This is what would save me.

I got in the next day. My family doctor was horrified at my treatment from my GI doc. He immediately called his GI doc friend, and they both decided to get me in for a CT scan that day. Later that night, my family doc called and gave me the results: SMA syndrome. I was to meet with the new GI doc and a vascular surgeon within the week. I did not know what on earth SMA syndrome it was. So I started googling it, and nothing was coming up. I found like 2 things. I had nothing to research. I did not understand what it was that was making me so sick. I found a support group on Facebook, and here is where I found a lot of helpful info. Now it was time to meet with the GI doc and the surgeon.

I first met the surgeon. He explained in more detail what I had. My SMA artery and my aortic artery were at a 15 degree angle. I think he said the normal angle is 22 degrees. This posed a problem because it was squeezing my duodenum, the tube that your food passes through. You have to have a life-saving surgery. The surgery is also very risky with a very hard recovery, and afterward your GI system will basically never be the same. Your quality of life will never be the same. Many have to go back in for surgery. It all sounded awful. However, he wanted me to do one more test before I had surgery.

We next met the GI, and he was talking about putting a pacemaker in my stomach or taking my stomach out! He said that I needed to gain weight ASAP! I was dumbfounded! Take out my stomach? What? He also alerted me to the fact that I had an autoimmune disease in my intestines that my previous GI had not alerted me too. So he gave me meds and such.

I was scared. I had just lost one of my good friends, and now I was hearing that I had a life threatening illness. My sweet friend whom I had lost had the favorite color purple, and when I found out SMAS’s color was purple, I felt like she was there for me. I researched the surgery over and over and just had a bad feeling about it. The outcome of the surgery never seemed to turn out great. The only doctor who seemed to know how to do it properly was in Maryland. I just felt like all the odds were stacked against me. My anxiety was insane, and this huge decision about surgery was causing havoc in my life. I knew all I could do was turn my life to the Lord.

Here is where my story turns and is put into the hands of the Lord. This past summer, my good friend was telling me the story of how she had been diagnosed with arthritis. She has 4 boys and just could not do it. She went to her bishop and told him her story and asked him for a blessing. He told her if she believed she could be healed, and she said yes. So he gave her a blessing. The next time she had tests done, there was no sign of arthritis. I was astonished! I had heard of these stories in the scriptures, but I had never heard of someone close to me really actually being healed!

I had to tell you her story to tell you mine. When I was diagnosed with SMA syndrome, I was devastated. My doctor kept telling me it was life threatening, and I spoke to others via a FB support group who had it and had surgery or no surgery. My quality of life looked very bad.

On a Monday, I was scheduled for one last test. On Sunday, I felt I needed a blessing, and I wanted Danny’s (my husband’s) dad to give it to me. I was missing my own dad, who is in Heaven, and he is like a dad to me. In my blessing He told me that, “My own dad wanted me to know that the Savior does heal people, and that he has done it before and that he can do it again according to my own faith.” I thought of my friend who had been healed of her arthritis and knew that it could be done, so I had faith. After my blessing, Brent hugged me and told me that he knew my dad was in that room. I also felt like Kayelyn, my friend who just passed, was there as well.

I went into my barium test the next day, feeling positive. The x-ray tech told me that for people with my condition, the test will take twice as long, as the barium can’t get through as easily. So I prepared for a very long day. The test ended up taking the normal amount of time. At that point, I wondered what had changed. I also slowly started to eat, little by little, and that was new and a small miracle!

A few weeks later, we met with the surgeon, and he told me I was one rare case. Nearly every person with SMAS has to have the surgery, the surgery that I had been hearing kills many of its patients. My SMA was still there, but for some reason, it was not squeezing my duodenum like in all other cases. So he would not recommend surgery. I had tears in my eyes as he told me he had not ever seen that before. He had never seen an SMA at a 15 degree angle that was not squeezing the duodenum all the way. I felt as though I had been healed. Not so much healed, as I still have the SMAS, but the SMAS is not a life-threatening issue at this point. But if I were to lose more weight, it could become a problem.

I don’t feel like I was spared because I had more faith than other people. I feel like the Lord and Savior knows my limits, and this was one I could not handle right now. To all the SMAS warriors who have endured so much, you are so brave, and you are such an example to many, and I know you will be rewarded for it either in this life or the next.

I still have the worst of gastroparesis, but it is manageable. I have to work on eating and eating small amounts at a time. It will always be present in my life, and I am okay with it. The SMA syndrome is something that I will always have, but I don’t have to have surgery, which could have debilitated me. I am happy to have gained 3 lbs., which is a big deal, as my body does not absorb as much as others’ normally do.

I still struggle on a daily basis. My esophagus has since narrowed as a result of SMAS, and I have developed a swallowing issue. I have good days and bad. I have just learned to live with it and fight. Fight like a girl!

Submitted 01/15/2016

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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  1. Mary

    Hello my name is Mary, and after reading your story I just began crying. My GI situations has been going on for a lot of years. Starting with pancreatic cancer, they performed what is called the “Whipple procedure” which removed most of the pancreas and gal bladder, I also have acid reflux and GERD. All of this later turned me into a diabetic, now I have gastroparesis. My stomach swells as if I am 8 months pregnant, the pain is crazy on top of chronic pancreatitis. Yet in all this I know the Lord very well and I know all things are possible in His strength. My symptoms landed me in the hospital and I don’t know much about the degree of my issues, however because of your post I now know what questions to ask, and what test needs done.
    So thank you for your strength! and continue to fight like a girl!

    • marnette reed

      Hello All who suffer from this disease, i wish you didn;t have to go through this pain, i wish you all great recovery and better test results along with outstanding medical treatment. My friend Mary is the most strongest Woman i have ever met in my Life time. Mary has taught me to fihgt on several occasion, so now im sending Mary a Blessing in Jesus Name You Are Healed. You are my Hero , my Best Freind and my Big Sister, I love you to pieces and i need to let you know i need you more than life. Get Better Sister. As for you Kelly your faith has confirmed to me that i will never have to doubt GOD again. Mary you always remind me that GOD has never went anywhere he”s always there for all of us I LOVE YOU Mary T.

      • Kelly

        Thank you for your kind words! You are a great friend to Mary! She needs it!

    • Kelly

      I am so sorry. I am so glad my story helped you. I too started having organs getting removed, but it was not it. I know how you feel with feeling 8 months pregnant with Gastroparesis. I used to get asked when I was due! It was humiliating! Bless you!

  2. Elaine

    I also have SMAS, with other problems, I have RA, copd, congested heart failure, kidney and heart disease, heart attack, colitis, fibromyalgia, hypothyroid, I got down to 89 lbs, I was not a candidate for surgery to many problems, so with support and has to have something to do with, holy intervention, I am at 137 lbs, I can eat what I want now, yes I still have SMAS, yes sometimes I have to take nausea pills, but my stomach ok, now to work on RA

  3. Kelly

    You poor thing! I understand, I do. I also have Fibromyalgia, migraines, PCOS, Major depression, anxiety and Colitis. It is no fun to have a bunch of things is it? Like you and like my story says, I did not have surgery either. I have to take nausea pills daily, but we are here right?! We are warriors!

  4. Bree

    Thank you for sharing! Your story sounds so much like mine! I am still in the early stages of trying to get a diagnosis. My CT scans and barium fluoroscopy test all show signs of SMA syndrome according to radiologists. My doctors here just say it is just so rare and keep to my liquid and soft too diet. (I cannot do solid foods without ending up with pains near the bottom right of abdomen near my navel.) when I do eat a larger meal or solids the left upper side of the stomach swells and becomes distended. My dr did an electronic Mayo Clinic consult and it pretty much said it could be SMA but some things contradict it and I am not bad enough for intervention. In 2 weeks I go up to Chicago to get an opinion at UIC to help find answers and to hopefully get an official diagnosis. I know I can put up a liquid and soft food diet forever but I just want the reassurance of what is going on and how to deal with it.

  5. Louie Arecco

    Thanks for sharing your stories. My sweetheart has SMA and can’t seem to find the right doctor. Can you guys recommend someone? Thanks in advance.

  6. Ruth Hollon

    I was diagnosed with gastroparesis in September 2017, but I had been sick much longer than that because I lost about 20 pounds due to lack of appetite. I was over weight anyway so the weight loss didn’t concern me. I just felt bad, but really couldn’t put my finger on what that meant. I had zero energy or desire to do anything or go anywhere. Fortunately I am retired and so is my husband. However, he does work part time. I would have good days and bad days. I became more withdrawn from the world. I didn’t want to go anywhere, not even to church, which I was always a faithful church goer. I began to think I was just lazy….there’s nothing wrong with me. Then when the next bad day came along I knew better. I’ve had GERD and acid reflux for at least 20 years. And bowel problems seemed to run in my family. I went to see a GI doctor. She did several tests and diagnosed me with GP. I had never heard of GP so I knew nothing about it. Fortunately, I do not have the pain that many GPers have and I’m thankful for that. My biggest problem is depression, anxiety, lack of energy and motivation. My GI doctor prescribed protonix and ginger. We talked about taking Reglan, but I was too afraid of the side effects. There are some foods I cannot eat; if I do I pay the price. I have had days that I have been so sick I thought I was dying. I was afraid to stay alone while my husband worked for fear he would come home and find me dead. I didn’t want to die alone. I would pray, “Lord, just take me. I am no good for you here.” I do have nausea, bloating, brain fog, and gas. I fear going out in public because of my gas problem. I have read several of your stories and I know that most of you are in a lot worse shape than me. My heart goes out to you. On top of all of this I’ve had some personal problems that I have no control over. Some days I just feel like I am existing, not living. My house needs cleaning and that depresses me. I do what I feel like doing. I feel like I have no control over my life. I fear people think I am a hypochondriac. Some days I am so sick, I have to cancel Dr. appointments. My husband drives me almost every where even though I can drive. He does the grocery shopping, cooking, and the dishes. He also does some cleaning. I do the laundry. There are very few days I feel like a 10. I take 2 antidepressants, see a psychiatrist and therapist. I feel like I’m just waiting to die. My husband is a jewel. I don’t know what I would do without him. I just wanted to share my story with someone that understands.

  7. Stephanie

    I have been misdiagnosed with Chronic back pain and have suffered with back pain in my lower left flank area. I have been on opiates for years. Now that I am off of therm I am in severe pain 24/7. I had a rouxen y gastric by pass in 2004 and lost 100 lbs. In March I started losing weight again I was in too much pain to eat. I lost another35 more pounds. My primary care has me on a mood stabilizer that makes me crave carbohydrates who’s wreaks havoc with my type 1 diabetes I went to a vascular surgeon, he said both of my Mesenteric areteries were blocked after doing an angiogram. The CT scan showed that only the celiac artery was blocked and therefore could not do the surgery I needed. Now I have to wait for another opinion from another vascular surgeon. I went through my a bariatric surgeon and he explained the SMA Syndrme. But I am in pain waiting for someone to do something about it. I can not sit or lay on my back. Someone please help

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