Adults with Cyclic Vomiting Syndrome - Mary Beth

Hi everyone,

I'll do my best to help you understand what I can.

To Lee, I too like your son lost an incredible amount of work time. Almost losing my job in the meantime. then put on "probation" for an extended amount of time because of my health issue.

Gastroparesis is a stomach motility problem the stomach doesn't empty the way it should. Solid food is the problem. Does anyone's children have a problem with solids ? I never ate during episodes either, drinking liquids was torture enough. The symptoms would build for days till I was in a" full blown" attack, which consisted of terrible pain, vomiting for hours on end very rythmic, you could keep time by my vomiting, hot and cold flashes, dizziness, a terrible thirst but afraid to drink because when I would put anything in my stomach just the weight of it hurt. I would literally lie in my bed and moan for hours on end till it would pass 12-18 hrs. Light also hurt my eyes and I was very sensitive to sound. Trying to communicate seemed to be the worst, just talking made the pain worse. I could not sleep because the pain was so bad.

I had my gall bladder removed over 2 yrs. ago , the next operation was a total hysteryctomy(thank God I had my children), then an appendectomy, repreated endoscopies, colonoscopies, blood work etc., the common bile duct was opened and a stint placed and the last surgery that proved to be the most helpful was to repair an intermitent cecal bascule, (the intestine would flip over upon itself).

I take propulsid 2-4 times a day also pervacid 2 times a day. Always before meals besides the stomach not emptying the condition produces enormous amounts of acid. It has taken me over 6 months to experiment with the dosage of propulsid to make life easier.

I can only eat small meals something I suggest you all try. Eat frequently throughout the day and follow a low fat diet. I had been on every diet imaginable to try to figure this out, from fat-free, dairy-free, wheat-free, gluten-free you name it.

I was seen by immunologist's, ob-gyn's who thought it was hormonal but guess what! 1 week after my total hysteryctomy I had a major attack and the Dr. said very flippantly well I guess that wasn't the problem. You can imagine my frustration. I was reluctant to go ahead with that surgery from the start, but the Dr. was sure he had the answer. The Dr.'s tried presribing birth control pills, then off the pill then prozac when none of these helped the symptoms the only answer in thier eyes was surgery. Please don't let anyone tell you that it's the way to correct the problem if they think it's hormonal. That what they thought with me and they were WRONG and it's an awful operation and the consequences are worse.

My Dr.'s at John's Hopkins were the best. They were dilgent in thier quest for an answer and listened with their hearts. Something that was completely foriegn but desperately needed. You hurt so bad inside that you don't understand that no one else can see how desperately you need help and comfort. But I learned the hard way to most people since they can't "see" the injury or sight (no bleeding, etc..) they feel "how can it hurt so bad?". Believe me it doesn't just hurt. You want to die. I know I did. People relate by seeing things if they can't see it they just don't understand. I never knew this while I suffered so, my own family didn't till now but it caused terrible pain and harm in our relationships. As an adult I can try to rationalize but I still feel betrayed.

My heart goes out to all the children. You don't understand this thing that grips you out of nowhere and all you want and need so desperately is for someone to tell you you'll be O.K. and to be held, and to know you're not alone. Alot of the time I just wanted someone to lie beside me, not talk, maybe rub my back lightly, but mainly just be there. You're so alone in the pain the comfort of someone there is tremendous. If only my family understood and tried then. I know I tried to relate alot and have alot more I could tell.

I will do my best to help you in anyway I can. I'd be glad to talk to the children and tell them to always keep hope, your prayers will be answered. Sometimes we just have to wait a little longer than we'd like. Remember, God's a very busy man there's only one of him and millions of us. He will answer you. Take care.

Mary Beth

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