Gastro What?

Four months.  Four long months of battling morning sickness nausea, but no baby.  It hits the same time every morning between 8 and 9 a.m.  I’ve been living on Zofran for four months each day.  One month I thought it was from a leftover upper respiratory infection, along with the cough.  Then I began to think it might be my hormone and called my gynecologist.  She said no and sent me to a gastroenterologist.  “Sure, I’m only leaving for Hawaii in TWO WEEKS!”

I had not been eating and noticed my clothes were getting a little looser.  I had a check up with my neurologist and they asked all the normal questions and I told him of this unexplained nausea and cough.  He immediately said, I think you probably have Gastroparesis.  Gastro what? He told me it can be from over narcotic use in migraine sufferers.  (I thought, oh great, another reason to put on my medical record if I need to go to the ER.)  I still wasn’t comprehending what he was telling me.  I told him I already had an appointment with my gastro doctor and would fill him in when I heard something.

I saw WONDERFUL Dr. Farooq at Gastro One the day before we left for Hawaii and without doing the endoscopy, he told me the same thing.  “It’s either Gastroparesis or and ulcer, and they sometimes present the same way.”  I was scheduled for an endoscopy after Hawaii and realized I had lost about 10 pounds and was not feeling “Hawaii bound” even after a bag of IV fluids.  That night Jay asked, “Do you still want to go?”

If you have seen my Hawaii pictures, there was one of me in the hotel room in the bed.  Jay snapped this after a rough morning of trying to eat (oatmeal) and unfortunately seeing my food again.  I had not thrown up to this point with this stuff.  And we were about to get on a BOAT! Praise the Lord, He saw me through the rest of our journey without any vomiting! But when we returned, my endoscopy did not end well.

What in the world is Gastroparesis? I’m talking about this because 1) I need information from people I trust, and 2) I can always use your prayers.  Here is the information I have learned:

Web MD states “Gastroparesis is a condition in which your stomach cannot empty itself of food in a normal fashion. It is caused by damage to the vagus nerve, which regulates the digestive system. A damaged vagus nerve prevents the muscles in the stomach and intestine from functioning, preventing food from moving through the digestive system properly.” Just like with a limb which has paralysis due to nerve and muscle damage, there is no cure for Gastroparesis. Gastroparesis patients have to rely on symptom management alone to aid in managing their Gastroparesis symptoms.

Gastroparesis symptoms are on a day-by-day basis. Gastroparesis can severely affect the quality of life of the person suffering from it. Frequent trips to the emergency room and doctor’s office visits become a normal routine. Due to a lack of medical research and awareness, it’s a common misconception that Gastroparesis is a rare condition. Gastroparesis symptoms include Early Satiety (feeling full after just a few bites), heartburn, weight loss, weight gain, abdominal bloating, abdominal pain, diarrhea, constipation, erratic blood glucose levels (mainly in diabetes), lack of appetite, gastric reflux, spasms of the stomach wall, malnutrition,  chronic nausea, vomiting (often of undigested food), and an inability to tolerate dietary fats.  Luckily, Jay knew of Gastroparesis when I was diagnosed because of his diabetic patients he transports.

As stated by the Mayo Clinic “There is no cure for Gastroparesis. Making changes to your diet may help you cope with Gastroparesis signs and symptoms, but that’s not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.” There are only 3 oral medications currently for the treatment of Gastroparesis and those are Domperidone, Reglan, and erythromycin.  Domperidone is a non-FDA approved drug in the United States and side-effects include lactation, a rapid heart rate that can sometimes lead to sudden death, dizziness, and trouble sleeping. Reglan is sold in the United States but crosses the blood-brain barrier and causes Tardive Dyskinesia (an incurable disease that causes jerky movements to the limbs, head, tongue, and face similar to that of Parkinson’s disease). Dr. Farooq warned me about this and I have already had a few tremors with the Reglan.  Erythromycin is a low does antibiotic that is sometimes used to treat Gastroparesis but few doctors prescribe it because its side-effect include the very symptoms that Gastroparesis patients try to get rid of – NAUSEA.  I have not been able to take Emycin for years and is on every doctors list of medications in which I am allergic.

Gastroparesis is a long-term chronic illness that affects the way those with Gastroparesis live their lives. A NORMAL healthy diet consists of fresh fruits and vegetables, food that’s high in fiber and a good amount of exercise. Those with Gastroparesis however, CANNOT digest foods that are high in fiber or high in fat because Gastroparesis causes a delay in how the stomach functions. When food that’s difficult for the body to digest is eaten (such as fresh fruits, fresh vegetables, and food that’s high in fat) it slows down gastric motility. When someone with Gastroparesis eats foods that are high in fiber and high in fat it furthers the delay in Gastric motility and can cause serious food masses, food poising (due to food rotting in the intestines).  I have endoscopy pictures to prove it.  Think of this – no more salads.  Lettuce is one of the hardest foods for your stomach to digest.  Eating specific foods and some forms of herbal treatments without consulting a GI physician can be dangerous and can lead to deadly consequences. Many of those with Gastroparesis don’t just struggle to digest food, but they struggle to digest liquids as well and end up having to resort to feeding tubes or TPN (intravenously fed through the blood stream).  Oh, remember TPN? That was Trey’s favorite.  You’d have to tie me down before you put me on TPN!

So here I am.  Left with a specific and very limited diet, medication that makes me feel like a slug, but at least I have an answer.  I am thankful for a very, very understanding and wonderful, knowledgeable husband.  Just to think that God blessed me so many years ago with this Godly man and knew that he would go into the medical profession and how I would need his tender heart.  I am overwhelmed.  This also might be a blessing in disguise because it might cause both of us to eat healthier foods but in a different manner than most families. Fiber and fats are not my friends.  I covet your prayers for my new lifestyle, my frustrations, and that of my family.

Never thought I’d say…I’m not that hungry.

#pikotopshidebloat #greenforgastroparesis  #learningtosayNO #notubesplease

Phil. 4:13 “I can do all things through Him who strengthens me!”  Because Jesus Loves Me!!!

3 thoughts on “Gastro What?

  1. Lisa my husband was a Type I diabetic and had gastroparesis; it was explained to him as neuropathy of the stomach. I currently have “the cough” and problems with digestion. I was on reglan mostly to speed up digestion; My stomach makes too much acid so I attempt eating more alkaline foods. Also, at Whole Foods you can buy gallon jugs of a 9ph water. That might help.

    • Lisa: I have spoken to you before, my daughter Keisie was a Dragon too, was killed at 17 and is now one of Trey’s buddies in Heaven. I have daily migraines, vomiting and serious stomach issues also. I have spent 2 days last week at Gastro One for both tests. If you have not seen the new People Mag, there is a lady named Lisa with the same disease and you may get more information from her. I am still in Collierville, but spend most of my life in bed and I too have the most precious and Christian husband that hauls me to doctors. You can call any time. Pam Hyde

  2. I came upon your blog just by chance but both my brother (age 10) and I have Gastroparesis complicated by Mitochondrial Disease. Both of us are TPN dependent (him for three years and me for two years) and feeding tubes prior to that. A liquid diet really helps if you are able to get Ensure or other nutrition drinks. I recommend a Gastric Emptying Scan to see how slow the motility in your stomach actually is. There’s multiple Gastroparesis support groups on Facebook that could help you with more ideas on finding foods to eat. You are lucky you had doctors who knew what Gastroparesis is! Many doctors don’t and it can take some years to get a diagnosis!

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