You have what?

Gastroparesis, it literally translates to “paralyzed stomach”. The reader’s digest version is that if I eat a meal, it will either (a) take a very long time to digest or (b) it just sits there in my stomach and won’t digest. Symptoms usually involve upper abdominal pain, nausea, reflux, vomiting, fatigue, feeling full fast and not being hungry at all. Click here to read the Cleveland Clinic’s information on Gastroparesis . It is much more thorough and they are #2 in the nation when it comes to stomach issues. I see them on a quarterly basis at this point.

There are many different theories as to what causes it. Usually, damage to the vagus nerve or diabetes are the major causes of Gastroparesis.  But if you’re anything like me, those aren’t good enough reasons to have this disease. I have what’s called Idiopathic Gastroparesis. Websters dictionary defines idiopathic as “arising spontaneously or from an obscure or unknown cause”. Yup, that’s right. There is no found reason as to why my stomach stopped working.  It just woke up one morning and said ‘nah, I’m done with this job… I quit!’

Looking back, I’ve had these symptoms for years but less severe of course. I always chalked it up to a stomach ache, food poisoning, or the stomach flu. It wasn’t until August 2014 that these symptoms spiked. Pain in my abdomen would make me drop to my knees. I was vomiting anything I ate and having severe heartburn. I would wake up with stomach acid in my mouth. I would finish big bottles of tums weekly, took generic heartburn medicine and lots of ibuprofen. Finally, I broke down in September and went to the Emergency room. They pumped me with liquids since I was dehydrated and gave me pain meds then sent me on my way. I still had severe pain later that night and that’s when my Primary Care Physician  (PCP) told me to go to another hospital and he would have me admitted for observation.

This turned into a 5 day stay. I had 2 endoscopys, a colonoscopy, CT, ultrasound, X-ray,  MRI, countless blood tests and an oh so lovely stool test. At the end of this stay, my team of doctors said I had Gastritis, Esophagitis, GERD, Barret’s Esophagus, and a slightly slow Gallbladder. They said removing the Gallbladder MIGHT help but they weren’t sure. A surgeon came to see me and said my symptoms fit but the location of my pain was not textbook so he declined the surgery.  I was released with a treatment plan to fix what they did find.

I really tried to believe their plan would make me better but the pain remained and I was dropping weight really fast. The lack of food lowered my weight. The constant vomiting robbed me of any nutrition and made me so weak that I couldn’t get out of bed. Exactly 1 month had passed before I landed back in the observation wing of the hospital. 6 more days of tests, fluids, and pain meds convinced a surgeon to take out my gallbladder. He told me that the odds of this solving my problems was only 50%. I weighed my options and figured if it did work then I would be done with this horrible pain. If it didn’t work then it would eliminate one thing from possible causes. So I had my gallbladder removed. To my surprise it helped for about a week. By the time I had my follow up appointment, I was vomiting again and the pain was back. My team of doctors threw in the towel and referred me to the Cleveland Clinic in Ohio.

I met with a Gastroenterologist there and he gave me hope. That alone is the biggest thing a doctor can do for someone dealing with an invisible illness. He told me it wasn’t in my head and that people don’t lose this much weight this quickly by it being only in their head. I had a full day of tests that included a CT scan, a stomach emptying scan, blood work, and a test in the transfusion center.

Finally, I got my answers in January 2015. I was informed that my stomach was retaining food even after 4 hours. This is why my stomach would swell, cause pain and vomiting. I was so happy for a diagnosis because this meant I really wasn’t crazy. I cried tears of joy. Those tears quickly turned into tears of frustration and disappointment once he explained that there is no cure. He explained they can manage symptoms but that’s about it. The medicine they use to help the stomach digest have some pretty big side effects. I was put on Reglan 3x a day and hoped that this would work and let me live. If you aren’t familiar with what Reglan is click here.

The trade off to being able to eat again without vomiting was the possibility of Parkinson’s like issues. I weighed my options again. I was very desperate to eat again that I went with it. Besides, what are the odds that the side effects actually affect me, right? About a month of Reglan had somewhat improved my symptoms but had started to make my leg shake uncontrollably.  I was having trouble walking. I notified my doctor and he stopped the medicine right then. My leg stopped shaking after a few days off the Reglan. Good news was that there wasn’t any permanent damage. Bad news was that I was back where I  started– no medicine and no food.

My doctor at the Cleveland Clinic referred me to a specialist in Gastroparesis. After meeting with him, I was told that I was going to have to manage this with diet alone. The statistics given to me were 1/3 of people get worse; 1/3 of people manage to plateau and live with Gastroparesis; and lastly 1/3 of people get better. My skies became grey and the sunshine has been very limited since then.

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4 thoughts on “You have what?

  1. I am a sufferer of an illness that I fear will be diagnosed as this. Every stomach symptom/trial you have mentioned, I am currently experiencing. My gastric emptying test is on Thursday. I know there is no cure for gastroparesis, So i am terrified for an answer… if it may ne that… but I long for an answer because I am so sick amd in so much pain. I have never come across a post so similar to how I feel every single day. So, thank you. You have made me feel less alone in this fight x

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    • I’m sorry to hear you’re going through this too! I remember doctors not having an answer for me since all my tests would come back normal and almost wishing they would find something. Of course I asked to lay off cancer and organ failure. I remember being happy for a split second for finallly having a diagnosis but then quickly realized there wasnt a quick fix. Don’t worry though, you aren’t alone. There are lots of support groups and people at different levels of Gastroparesis on Facebook. They a closed private groups and they are full of wonderful people that understand the struggle. I’ll create a post with links later on today. I hope you find answers and relief!

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  2. Thank you. I will be awaiting your post. You don’t understand how happy I was to read something like this. The symptoms are so overwhelming. I just hope I learn to manage it all… find some sort of relief. A diagnosis would be wonderful too.
    Thank you again. You have really helped me today xx

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  3. I was unfortunately diagnosed with this. Mine is post-viral apparently, but they don’t know that for sure so I guess mine is idiopathic also. If you have any advice to share with me on management, I would greatly appreciate it. I am struggling to find other sufferers, or appropriate medication to help ease the symptoms. Thank you. I’m happy I found you! x

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